Hey all, long time no post, and I will do a longer one soon, but here is a piccy of me with my fellow 10k runners today. I got round in 1 hr 11 and feel brilliant about it!! Never thought I'd even get round in 1 hr 30! xxx
Sunday 13 September 2009
The 10k!!
Hey all, long time no post, and I will do a longer one soon, but here is a piccy of me with my fellow 10k runners today. I got round in 1 hr 11 and feel brilliant about it!! Never thought I'd even get round in 1 hr 30! xxx
Friday 7 August 2009
Chipping away... like a chippy thing.
Howdy,
I took the lamer choice of not updating until I had a decent number of things to update with... so I've been working quite hard at doing stuff to make myself sound interesting and important.
Firstly, the day after I left LCH I had my driving theory test booked up, so off I went to do that... which was fine, passed and have bought myself a bit more time to pass my driving. In and amongst things we've had a few lessons, which haven't been as bad as I thought they would be after not driving for 6 weeks (!)... so hopefully it'll fall in to place a bit now.
My fitness has been coming along slowly but surely. I really do mean s-l-o-w-l-y, too. I've kept up the walking daily, covering 2-3 miles which is getting more comfortable now, even on 1 litre 02. I've only really had a couple of sessions on the treadmill though... I seem to have becom a little bit more wary of pushing myself a bit, which actually I no longer need to be.
I think it's just a combination of getting out of the habit of daily 'proper' workouts where you get significantly more out of breath, the fear of pain and being uncomfortable, which to be honest it still is a bit, and feeling a bit overwhelmed with life in general.
I did a 2 minute run (6mph, slight incline, 4 lpm o2) a couple of days after I got home, and actually it was nowhere near as hard as I had imagined in terms of keeping the pace and general 'feel' and technique. It was just the breathlessness creeping up a bit too much toward the end that made it less enjoyable. But no muscle pain or tenderness form the operation, which is brilliant!
I then left it about 4 days (embarassed) until today deciding I really do need to start cracking on with it and doing 5 minutes today (3 minutes, then 2 minutes) which was again surprisingly okay. I put the 02 up to 6litres and I think it made quite alot of difference. I felt alot more comfortable for much longer and didn't feel lactic-ey like last time. So I think 6 litres may be about right for now. I'll try and get an exercise test done in the next month to verify this though.
I think now that I'm a bit more motivated (and the ever approaching 10k is about 5 weeks away), I'm going to try increasing the runs by a minute per session for a couple of weeks. And they'll probably stay in 2-3 minute intervals this week.
As in, I'll do 6 minutes tomorrow, have a break the next day, 7 the next and so on, as long as each session is comfortable. Going by this, my short term goal is to be running for a solid 10 minutes by the end of next week. I'll make sundays my longest interval day again as that worked well last time.
That's probably enough from me for now! I'll be back xxx
I took the lamer choice of not updating until I had a decent number of things to update with... so I've been working quite hard at doing stuff to make myself sound interesting and important.
Firstly, the day after I left LCH I had my driving theory test booked up, so off I went to do that... which was fine, passed and have bought myself a bit more time to pass my driving. In and amongst things we've had a few lessons, which haven't been as bad as I thought they would be after not driving for 6 weeks (!)... so hopefully it'll fall in to place a bit now.
My fitness has been coming along slowly but surely. I really do mean s-l-o-w-l-y, too. I've kept up the walking daily, covering 2-3 miles which is getting more comfortable now, even on 1 litre 02. I've only really had a couple of sessions on the treadmill though... I seem to have becom a little bit more wary of pushing myself a bit, which actually I no longer need to be.
I think it's just a combination of getting out of the habit of daily 'proper' workouts where you get significantly more out of breath, the fear of pain and being uncomfortable, which to be honest it still is a bit, and feeling a bit overwhelmed with life in general.
I did a 2 minute run (6mph, slight incline, 4 lpm o2) a couple of days after I got home, and actually it was nowhere near as hard as I had imagined in terms of keeping the pace and general 'feel' and technique. It was just the breathlessness creeping up a bit too much toward the end that made it less enjoyable. But no muscle pain or tenderness form the operation, which is brilliant!
I then left it about 4 days (embarassed) until today deciding I really do need to start cracking on with it and doing 5 minutes today (3 minutes, then 2 minutes) which was again surprisingly okay. I put the 02 up to 6litres and I think it made quite alot of difference. I felt alot more comfortable for much longer and didn't feel lactic-ey like last time. So I think 6 litres may be about right for now. I'll try and get an exercise test done in the next month to verify this though.
I think now that I'm a bit more motivated (and the ever approaching 10k is about 5 weeks away), I'm going to try increasing the runs by a minute per session for a couple of weeks. And they'll probably stay in 2-3 minute intervals this week.
As in, I'll do 6 minutes tomorrow, have a break the next day, 7 the next and so on, as long as each session is comfortable. Going by this, my short term goal is to be running for a solid 10 minutes by the end of next week. I'll make sundays my longest interval day again as that worked well last time.
That's probably enough from me for now! I'll be back xxx
Wednesday 29 July 2009
Sigh... cough... tempestuous times People!
Argh. I'm an unworthy blogger who doesn't blog enough! Sorry.
You may have guessed, from my usual pattern of awol, that I've been not so well again :-(
I'm pleased to say that things are totally on the mend again and I'm deffo back on track. Basically that naughty temperature spike and slightly iffy chest wasn't 'nothing' as I would have liked it to be... it just carried on and on, till I was lying around with a nasty cough and a 40 degree temp yet again. So in I went to hotel Chest for IVs amongst other stuff. Happily for me and my body we did no change with my steroids and just blasted it with antibiotics, and it absolutely has worked. Which means it was just infection related NOT pneumonia. Incidentally though, my chest x-ray has cleared right up with this admission >grin<.
My lung funko is up to 81% from about 70%, and my gas transfer is 45% the last time I did it... which is down a bit, but my oxygen requirements are quite steady so I'm not really losing any sleep over that!
In terms of exercise, it's been a royal flop to be honest, as I didn't get back to any real workouts between the operation (the muscles/nerves have only just stopped hurting and seizing) and coming down with the infection. Which I can pretty much conclude means that I got the infection because of not being able to cough or breathe deeply for exercise :-/ not helpful!
It's okay though, I'm coughing away nicely now and getting all my clearance done - also making good use of accapella and have had pulmozyme 2 x daily for the past couple of weeks. I'm up to doing two sessions of exercise a day now too! I do a harder 'out of breath' session earlier on, where at the moment it's about 2 km in 20 minutes, on 1 litre of O2. Then later on, a lap of the park at an easy pace (30 mins).
I'm aiming to have a little 2 minute run tomorrow before I leave LCH, and see roughly what my sats do and what oxygen to have on, since it's been so long since my last run. It should be okay, more muscle weakness and jellylegedness than lung stuff.
From there, I think the sensible thing to do will be to keep at about the same level of walking daily, then add in short running intervals as I feel able. I'll do 2 minutes tomorrow and all being well, the same for the next few days. Then next week up it to 5 minute intervals.
Plenty to think about, that's for sure... I've gained back some weight (dropped to 40 the other week) with the old NG feeds giving me 2400kcal overnight, so I'll plug on with that and then stop as soon as I can get away with it!
And er, that's about all I can think of at the moment! I'll blog away with my return to training, and let you know how it all goes!
Take care xxx
You may have guessed, from my usual pattern of awol, that I've been not so well again :-(
I'm pleased to say that things are totally on the mend again and I'm deffo back on track. Basically that naughty temperature spike and slightly iffy chest wasn't 'nothing' as I would have liked it to be... it just carried on and on, till I was lying around with a nasty cough and a 40 degree temp yet again. So in I went to hotel Chest for IVs amongst other stuff. Happily for me and my body we did no change with my steroids and just blasted it with antibiotics, and it absolutely has worked. Which means it was just infection related NOT pneumonia. Incidentally though, my chest x-ray has cleared right up with this admission >grin<.
My lung funko is up to 81% from about 70%, and my gas transfer is 45% the last time I did it... which is down a bit, but my oxygen requirements are quite steady so I'm not really losing any sleep over that!
In terms of exercise, it's been a royal flop to be honest, as I didn't get back to any real workouts between the operation (the muscles/nerves have only just stopped hurting and seizing) and coming down with the infection. Which I can pretty much conclude means that I got the infection because of not being able to cough or breathe deeply for exercise :-/ not helpful!
It's okay though, I'm coughing away nicely now and getting all my clearance done - also making good use of accapella and have had pulmozyme 2 x daily for the past couple of weeks. I'm up to doing two sessions of exercise a day now too! I do a harder 'out of breath' session earlier on, where at the moment it's about 2 km in 20 minutes, on 1 litre of O2. Then later on, a lap of the park at an easy pace (30 mins).
I'm aiming to have a little 2 minute run tomorrow before I leave LCH, and see roughly what my sats do and what oxygen to have on, since it's been so long since my last run. It should be okay, more muscle weakness and jellylegedness than lung stuff.
From there, I think the sensible thing to do will be to keep at about the same level of walking daily, then add in short running intervals as I feel able. I'll do 2 minutes tomorrow and all being well, the same for the next few days. Then next week up it to 5 minute intervals.
Plenty to think about, that's for sure... I've gained back some weight (dropped to 40 the other week) with the old NG feeds giving me 2400kcal overnight, so I'll plug on with that and then stop as soon as I can get away with it!
And er, that's about all I can think of at the moment! I'll blog away with my return to training, and let you know how it all goes!
Take care xxx
Monday 13 July 2009
This is ROCK AND ROLL!!!
OH. MY. GOD. I went to wembley stadium last night to see not just Reverend and the makers, not just Kasabian, not just The Enemy, but all those and OASIS!!
It was probably the single most amazing and breathtaking days of my life, just awesome. There was about 70 thousand in there, heuge stage but it still looked small in Wembley (!), we jumped up and down, Oasis sung wonderwall, we all got soaked in beer, we had tasty burgers, I got a t-shirt, I'm in some random people's videos, I wore bright pink drainpipes, I shouted I love you Noel... erm... FOOKIN BRILLIANT!!
We had a slight moment of worry that we may not make it on saturday evening as my temperature went up and oddly enough I fainted after eating dinner. Only briefly but not very pleasant and I spent the rest of the evening crashed out on the sofa. It must have been a combo of things though - I'd done quite a lot of walking and it was chilly outside, my temperature came up too quickly, I had a bit of wine and a pretty rich fish pie that my cousin made... and just came over all dizzy. Next stop - the floor.
However, we were patient enough to just see what happened, I'd already taken painkillers so the temp was on it's way down again anyway, I had oxygen on the whole evening, took it easy, and decided not to do my feed as it raises your body temperature with you digesting it and everything. Instead I just did 1200mls of water over 8 hrs with some electrolyte sachets in it, and subsequently woke up feeling absolutely fine. And OFF WE WENT!!!!
I feel so lucky and so buzzing from it all, there wasn't a single song that you kind of wanted to finish and move on to the next, just endless brilliant performing. Epic.
My chest isn't brilliant, but in all honesty, I spent all night singing and cheering at the top of my voice lol... and it just so happened that we were right behind the only people in the stadium who thought it was fine to keep smoking. They were told by a guard, then lit up again, then I asked him, then he lit up again, and so on... about 5 ciggerettes I've smoked then... so I'm chesty and tight and making firm friend with ventolin nebs again. And bricanyl... and symbicort. Drugs.
I had a day without planned exercise per se, as we were walking about 3 km in total around wembley to and from our car park at the other end of town, and I was on my feet dancing for about 3 hours. Plus I slipped in an accapella session before we left to try and stay nice and clear.
My plan today is to erm, probably try and cover 3 miles in two sessions. Should be manageable. And this time, no wine and fish pie straight afterwards!
Ciou xxx
It was probably the single most amazing and breathtaking days of my life, just awesome. There was about 70 thousand in there, heuge stage but it still looked small in Wembley (!), we jumped up and down, Oasis sung wonderwall, we all got soaked in beer, we had tasty burgers, I got a t-shirt, I'm in some random people's videos, I wore bright pink drainpipes, I shouted I love you Noel... erm... FOOKIN BRILLIANT!!
We had a slight moment of worry that we may not make it on saturday evening as my temperature went up and oddly enough I fainted after eating dinner. Only briefly but not very pleasant and I spent the rest of the evening crashed out on the sofa. It must have been a combo of things though - I'd done quite a lot of walking and it was chilly outside, my temperature came up too quickly, I had a bit of wine and a pretty rich fish pie that my cousin made... and just came over all dizzy. Next stop - the floor.
However, we were patient enough to just see what happened, I'd already taken painkillers so the temp was on it's way down again anyway, I had oxygen on the whole evening, took it easy, and decided not to do my feed as it raises your body temperature with you digesting it and everything. Instead I just did 1200mls of water over 8 hrs with some electrolyte sachets in it, and subsequently woke up feeling absolutely fine. And OFF WE WENT!!!!
I feel so lucky and so buzzing from it all, there wasn't a single song that you kind of wanted to finish and move on to the next, just endless brilliant performing. Epic.
My chest isn't brilliant, but in all honesty, I spent all night singing and cheering at the top of my voice lol... and it just so happened that we were right behind the only people in the stadium who thought it was fine to keep smoking. They were told by a guard, then lit up again, then I asked him, then he lit up again, and so on... about 5 ciggerettes I've smoked then... so I'm chesty and tight and making firm friend with ventolin nebs again. And bricanyl... and symbicort. Drugs.
I had a day without planned exercise per se, as we were walking about 3 km in total around wembley to and from our car park at the other end of town, and I was on my feet dancing for about 3 hours. Plus I slipped in an accapella session before we left to try and stay nice and clear.
My plan today is to erm, probably try and cover 3 miles in two sessions. Should be manageable. And this time, no wine and fish pie straight afterwards!
Ciou xxx
Thursday 9 July 2009
Progressin noicely fenk youuu
Hiiii,
As expected, I've had a much better couple of days since my return to the homeland. Firstly I got a good nights sleep which always changes your perspective (I was feeling rather snowed under on the journey back) and makes you think straight.
Next, I had a driving lesson just for an hour the next morning and even though it went okay and nothing major made me worried, I decided that I would cancel my driving test next thursday as I'm just not confident enough with the town driving, my left side isn't that strong yet (makes putting the handbrake on and quick gear changes harder). I think it's the right choice as I know that even if I passed by fluke I wouldn't be happy driving around guildford alone.
This means I'll be re-doing my theory at some point in August. Very frustrating but that's that and I'm not going to lose anymore sleep over it. :-/
I've been sticking with the 40ish minutes of walking in it's various forms per day... managing a 30 minute treadmill walk on wednesday and improving to a hilly 40 minutes this morning. And I'm not going that slowly anymore now that the muscles are less painful, so gradually I'm getting closer to the jogging stage! Not long! And of course it needs to be fairly hasty as we've got the Cancer research UK 10k on September 13th.
Of course it doesn't matter if I ended up walking most of it, but I don't want to. So I'll still be trying to run at least half. I've got nearly 2 months so it seems doable given my fitness before this setback and how well things were progressing.
Since I've done 40 minutes quite comfortably this morning, I'll see about doing a bit more later, maybe 10 minutes at a faster pace on treadmill?
I think my goal for two weeks time is to be running again perhaps for around 5 minutes at a time, about 2-3 in a session. And be doing it 2-3 times a week. But I'll have to play it by ear as my breathlessness is still bit more than I'd like even at rest (gas transfer dropped a bit), and I'm aware I might have to use more o2 temporarily.
We had a really cool day yesterday, having spent ALL morning practically tearing my hair out over trying to get hold of the home enteral company to arrange delivery and 'pump training', we eventually got it sorted for today, so we could go out in the afternoon. I had birthday money to spend (new look vouchers, thanks Sis) so naturally clothes shopping all the way, and a nice club sandwichee in maison Blanc. Dontcha know.
I got a brilliant pair of bright pink skinnies from H & M and a black patterned Tshirt to go with it to wear to the OASIS concert on Sunday!!!! Plus the Enemy and Kasabian :-0 I haven't known about it for that long but these are three of my all times faves and it will be EPIC. It's my first concert too, what a way to begin!
Yep, Oasis, the Enemy and Kasabian all under one roof (well, wembley). I might need more than one pair of pants.
xxx
As expected, I've had a much better couple of days since my return to the homeland. Firstly I got a good nights sleep which always changes your perspective (I was feeling rather snowed under on the journey back) and makes you think straight.
Next, I had a driving lesson just for an hour the next morning and even though it went okay and nothing major made me worried, I decided that I would cancel my driving test next thursday as I'm just not confident enough with the town driving, my left side isn't that strong yet (makes putting the handbrake on and quick gear changes harder). I think it's the right choice as I know that even if I passed by fluke I wouldn't be happy driving around guildford alone.
This means I'll be re-doing my theory at some point in August. Very frustrating but that's that and I'm not going to lose anymore sleep over it. :-/
I've been sticking with the 40ish minutes of walking in it's various forms per day... managing a 30 minute treadmill walk on wednesday and improving to a hilly 40 minutes this morning. And I'm not going that slowly anymore now that the muscles are less painful, so gradually I'm getting closer to the jogging stage! Not long! And of course it needs to be fairly hasty as we've got the Cancer research UK 10k on September 13th.
Of course it doesn't matter if I ended up walking most of it, but I don't want to. So I'll still be trying to run at least half. I've got nearly 2 months so it seems doable given my fitness before this setback and how well things were progressing.
Since I've done 40 minutes quite comfortably this morning, I'll see about doing a bit more later, maybe 10 minutes at a faster pace on treadmill?
I think my goal for two weeks time is to be running again perhaps for around 5 minutes at a time, about 2-3 in a session. And be doing it 2-3 times a week. But I'll have to play it by ear as my breathlessness is still bit more than I'd like even at rest (gas transfer dropped a bit), and I'm aware I might have to use more o2 temporarily.
We had a really cool day yesterday, having spent ALL morning practically tearing my hair out over trying to get hold of the home enteral company to arrange delivery and 'pump training', we eventually got it sorted for today, so we could go out in the afternoon. I had birthday money to spend (new look vouchers, thanks Sis) so naturally clothes shopping all the way, and a nice club sandwichee in maison Blanc. Dontcha know.
I got a brilliant pair of bright pink skinnies from H & M and a black patterned Tshirt to go with it to wear to the OASIS concert on Sunday!!!! Plus the Enemy and Kasabian :-0 I haven't known about it for that long but these are three of my all times faves and it will be EPIC. It's my first concert too, what a way to begin!
Yep, Oasis, the Enemy and Kasabian all under one roof (well, wembley). I might need more than one pair of pants.
xxx
Tuesday 7 July 2009
The return of the tummmyyyy
Alright, I've caved... I'm going do do overnight feeds at home. But only for a little while just to get a boost in my weight, then I can leave it. And note the word HOME!! I'm off today and this time for good ;-)
I've not increased my exercise much beyond the 40 minutes of walking a day and I'm a bit frustrated with this although I think the main reason isn't soo much because I'm too breathless but because it's just ridiculously hot and humid. I feel like a bunch of bananas that's left in the bag you buy them in - all sweaty and sticky. I know it's the same for everyone but it make you so grouchy and rubbishy doesn't it!! Hopefully my room at home will stay nice and cool so I can actually get some sleep, especially since the feeds make me a bit fidgety and restless anyway.
I've opted with the fresubin 2kcal, 1litre that I'll pour into the hangbag myself, instead of the slightly fishy fresubin energy which is 1500kcal per litre. 2000kcal overnight and then I can just eat what I like in the day, not stress constantly over picking the higher calorie stuff all the time.
We decided that there's not alot more I can achieve by being here than being at home and just keeping in touch, as I feel okay and just need to get back my fitness and heal up. The cut's come together okay and I don't think it'll be really visible once it's faded.
I'll update with a contingency plan on training ect when I'm home! xxx
I've not increased my exercise much beyond the 40 minutes of walking a day and I'm a bit frustrated with this although I think the main reason isn't soo much because I'm too breathless but because it's just ridiculously hot and humid. I feel like a bunch of bananas that's left in the bag you buy them in - all sweaty and sticky. I know it's the same for everyone but it make you so grouchy and rubbishy doesn't it!! Hopefully my room at home will stay nice and cool so I can actually get some sleep, especially since the feeds make me a bit fidgety and restless anyway.
I've opted with the fresubin 2kcal, 1litre that I'll pour into the hangbag myself, instead of the slightly fishy fresubin energy which is 1500kcal per litre. 2000kcal overnight and then I can just eat what I like in the day, not stress constantly over picking the higher calorie stuff all the time.
We decided that there's not alot more I can achieve by being here than being at home and just keeping in touch, as I feel okay and just need to get back my fitness and heal up. The cut's come together okay and I don't think it'll be really visible once it's faded.
I'll update with a contingency plan on training ect when I'm home! xxx
Sunday 5 July 2009
Roll with the punches, kicks, and slaps.
Hi,
Apologies for no post yesterday, but it was one of those days where if i blogged, it would all be negative. I've had to give myself a bit of a pep-talk about things and get my head straight after this week, which I'm going to be honest, has not been one of my best!
I felt really sore and tight and uncomfortable all day yesterday and struggled alot to do my walks (2 x 20 mins). I don't really have a problem with making myself do stuff if it'll be good for me even though I know it's going to hurt and I know I'm going to feel rubbish doing it... but sometimes it's just finding that bit of 'oomph' that drives you on and keeps you focused. Walks completed and a fraction of the fluid retention coming off, I thought I'd at least have a good nights rest as I was tired all day but due to the steroid factor suddenly swooping in, I pretty much stared into darkness until about 3am, absolutely as wide awake and twitchy as you get... then gave in a read untill 4, when I felt just dozey enough for sleep. I've got up at 8 and todays been so much better. I've dropped almost all the fluid off now so I don't feel puffy, my back is less painful and more useable, and my energy level is good. So erm, don't really know why I felt so depressed last night!
I think sometimes it's okay to get down when some things don't go your way, but after a bit, you have to find comfort in things that do. Like on one hand, I'm not 100%, I've slipped and it's going to be quite hard work yet again to get back to where I was fitness wise, not to mention my driving test and social life... but on the other, I've recovered really quite well so far from what was quite a serious op only 6 days ago, my exercise has already gone up a bit, I'm looking quite well, I'll not be in LCH much longer, and I've had a nice time at home this weekend.
And above all, I know I can beat this thing because I've done it before! So I'll just have to go through the same process, and I'll get back to normal again. With regards to my driving, you can't have it all. Sometimes things happen that are shit, and if they get in the way of life, it's also shit. But it's not the end of the world. X
Apologies for no post yesterday, but it was one of those days where if i blogged, it would all be negative. I've had to give myself a bit of a pep-talk about things and get my head straight after this week, which I'm going to be honest, has not been one of my best!
I felt really sore and tight and uncomfortable all day yesterday and struggled alot to do my walks (2 x 20 mins). I don't really have a problem with making myself do stuff if it'll be good for me even though I know it's going to hurt and I know I'm going to feel rubbish doing it... but sometimes it's just finding that bit of 'oomph' that drives you on and keeps you focused. Walks completed and a fraction of the fluid retention coming off, I thought I'd at least have a good nights rest as I was tired all day but due to the steroid factor suddenly swooping in, I pretty much stared into darkness until about 3am, absolutely as wide awake and twitchy as you get... then gave in a read untill 4, when I felt just dozey enough for sleep. I've got up at 8 and todays been so much better. I've dropped almost all the fluid off now so I don't feel puffy, my back is less painful and more useable, and my energy level is good. So erm, don't really know why I felt so depressed last night!
I think sometimes it's okay to get down when some things don't go your way, but after a bit, you have to find comfort in things that do. Like on one hand, I'm not 100%, I've slipped and it's going to be quite hard work yet again to get back to where I was fitness wise, not to mention my driving test and social life... but on the other, I've recovered really quite well so far from what was quite a serious op only 6 days ago, my exercise has already gone up a bit, I'm looking quite well, I'll not be in LCH much longer, and I've had a nice time at home this weekend.
And above all, I know I can beat this thing because I've done it before! So I'll just have to go through the same process, and I'll get back to normal again. With regards to my driving, you can't have it all. Sometimes things happen that are shit, and if they get in the way of life, it's also shit. But it's not the end of the world. X
Friday 3 July 2009
Home leave soon!! But first, many, many blood tests.
Ahh, I'm having a lovely weekend at home with Mum, Dad and Claire (my georgeous cousin who's living with us for a while, with her pooch)! I'm off home later tonight and will come back sunday night, with intentions of being out for good next thursday, which doesn't seem too bad now.
The quirky little LCH catch is that as I'll need to come off this IV hydrocortisone, and need higher doses of steroids again for a while which won't be that easy with the triamcinalone jabs I've been having, I'm having my prednisolone absorption test and cortisol level testing today... so I had my 9am cortisol/ hydrocort. levels, nightmare, we had to use the vein in my groin and it fricking hurt.... then half dose of hydrocort. and first dose of prednisolone and then more blood at 11am, then 12.30, then one more at 3pm. Phew. Basically we think that I will absorb the pills, but that I may just need a higher dose to get the right blood levels. Which gives me a bit more freedom then having to come up for jabs all the time!
I finish my IVs today, so no home IVs to do which is going to be lovely! Just voriconazole and nebbing, and steroids. And the customary prescription for food and lots of it.
I'm not sure if I'll get much driving done as the left side is still a bit weak and numb... but if I could do an easy half an hour I'd be happy, just see where I'm at ya knowww.
In terms of exercise, I've got a little bit of a plan... I think since the pain in my back is hardly bothering me at all now (!) it's just a bit stiff and touchy, and my lungs are staying quite good, I'll aim to get back up to a better pace for walking.
It won't be the normal 4mph but I think I'll go for 20 minutes at 3.5, twice a day at home and see how it goes. Then I can report back for a bit more of an increase come monday. I think I just need to keep well rested and get my legs stretched and blood pumping a bit again rather than expect anything great after such a week. But I imagine that there's going to be nothing to stop me having a bit of a run in a couple of weeks time! Goody...
Anyways, I'll update you from the abode this weekendo. Have a goodern you lot xxx
The quirky little LCH catch is that as I'll need to come off this IV hydrocortisone, and need higher doses of steroids again for a while which won't be that easy with the triamcinalone jabs I've been having, I'm having my prednisolone absorption test and cortisol level testing today... so I had my 9am cortisol/ hydrocort. levels, nightmare, we had to use the vein in my groin and it fricking hurt.... then half dose of hydrocort. and first dose of prednisolone and then more blood at 11am, then 12.30, then one more at 3pm. Phew. Basically we think that I will absorb the pills, but that I may just need a higher dose to get the right blood levels. Which gives me a bit more freedom then having to come up for jabs all the time!
I finish my IVs today, so no home IVs to do which is going to be lovely! Just voriconazole and nebbing, and steroids. And the customary prescription for food and lots of it.
I'm not sure if I'll get much driving done as the left side is still a bit weak and numb... but if I could do an easy half an hour I'd be happy, just see where I'm at ya knowww.
In terms of exercise, I've got a little bit of a plan... I think since the pain in my back is hardly bothering me at all now (!) it's just a bit stiff and touchy, and my lungs are staying quite good, I'll aim to get back up to a better pace for walking.
It won't be the normal 4mph but I think I'll go for 20 minutes at 3.5, twice a day at home and see how it goes. Then I can report back for a bit more of an increase come monday. I think I just need to keep well rested and get my legs stretched and blood pumping a bit again rather than expect anything great after such a week. But I imagine that there's going to be nothing to stop me having a bit of a run in a couple of weeks time! Goody...
Anyways, I'll update you from the abode this weekendo. Have a goodern you lot xxx
Thursday 2 July 2009
I'll have what she's having....
Ok bloddy hell!! I'm still good here, much better than this morning and I think I know why!! I was having tramadol (like a pill version of morphine) since coming off of morphine yesterday, and all morning I was properly out of it, could barely keep my eyes open after my last post and alarmingly when I closed my eyes it was like a kaleidiscope, then some weird 'awake' dream lijke being on a swing and then quickly having to open my eyes and make sure I was on the bed coz I felt like I was actually swinging. It just went on and on, everytime I closed my eyes I was hallucinating. So I didn't take anymore tramadol, and I've been fine all afternoon. Thank god for that - I got really scared it was voriconazole which I need to be on for a week or two!!
I've got a very numb left side since the op, which I think is kind of good as I'm doing well with no pain relief now, but erm... hopefully I'll get feeling back in my left boob and ribs at some point!! Hope they didn't cut through a nerve lol...
I've got a very numb left side since the op, which I think is kind of good as I'm doing well with no pain relief now, but erm... hopefully I'll get feeling back in my left boob and ribs at some point!! Hope they didn't cut through a nerve lol...
The month that was... this month
Sorry for the appauling absence of blogging this month. I'll try harder!
Firstly, the good news, is that I am doing okayish at the moment, and that a few weeks back I managed nearly 30 minutes of non stop running on 6 lpm o2, at a speed of 6.5mph. Which was very encouraging indeed! So much so infact, that I've entered a cancer research UK 10k! Brilliant to do as well since my Mum is recovering from breast cancer, and has got really good care which is probably down to research and funding in to new treatments.
It's September the 13th, this 10k, and since it's hilly I'm aiming to run at least half of it, and walk when I need to. I'll have very kind running friends run with me to help with the 02, so we'll be a right motley crew.
Then fast forward to Friday 19th. I had a brilliant clinic appointment and shuttle walk test showing a MAHOOOOsive increase in my lung functions and x-ray looking great. I didn't desaturate at all walking very slowly, only a little bit at a normal pace, and then low 80's once brisk-jog pace. So considering that's on room air, not bad at all, and means that I need about half the amount of 02 to exercise than a few months back!
Unfortunately, having practically punched the air with chuffedness on friday, I could only throw my hands up in disbelief when I got a temperature of 38.2 on Saturday and then 39.5 on Sunday. Since my chest felt clear and my only complaint was feeling perhaps slightly more breathless (which you can get with fevers anyway), I would have been happy to try and keep it down with paracetamol and wait and see. And My consultant also said she was happy either way, but to be sensible... and by the end of Sunday, it appeared not so sensible to leave it as it wasn't staying down at all.
Poor Dad had to drive me up to LCH that evening to be admitted. I wasn't feeling awful but my temp was still 39 and my heart was really pounding with it, so we Started up some Iv antibiotics and fluids for Sunday night.
My temperature carried on being a complete pain in the buttock all week, still spiking up high and my chest x-ray looked a bit worse again, so I had a bronchoscopy (was heavily sedated this time lol) and we agreed that if it showed nothing and I was still the same, then we should do that open lung biopsy. This time I could kind of see that it was the only way to be sure of an organising pneumonia and not something that hasn't shown up elsewhere.
Surprise surprise, the bronch shed no light on the matter, so Monday I was carted off down to theatre and basically they cut in to your lung and take a bit out to have a good look at it and do loads of tests on it, then stitch it back together and you have a chest drain to keep the lung inflated while it mends. So an exciting few days on the High Dependancy Unit... I don't remember much of the first day and mostly slept although apparently made the staff run about a bit with my breathing straight after surgery. Probably down to asthma, but they had to put the breathing tube back in again lol... The next day I was up and able to walking around a bit with the physio and all my stands and pumps and general paraphenalia. And then yesterday, out came the pump, lung stayed up very nicely and up I popped back to CFU.
The very early initial results have shown some sort of fungal problem although it's not definate, but I've been started on Voriconazole anyway. I've also been on my old friend, hydrocortisone IV since monday. 300mg a day. Look like a hamster. Weigh 46 kg now compared to 41 on Monday. Make it stop!!
I'm still feeling a bit shattered probably because I'm taking stronger painkillers and they do knock you out if you aren't used to them... but in terms of pain it's not that bad today. Just a bit tweaky and strained if I'm in certain positions. I thought that the incision would be smaller so I was quite surprised to see a 2-3 inch scar across my back. It seems to be just low enough that most tops would cover it though!
I'll do a bit more updating later when I might know a bit more too. Will probably sleep alot again... yawn. xxx
Firstly, the good news, is that I am doing okayish at the moment, and that a few weeks back I managed nearly 30 minutes of non stop running on 6 lpm o2, at a speed of 6.5mph. Which was very encouraging indeed! So much so infact, that I've entered a cancer research UK 10k! Brilliant to do as well since my Mum is recovering from breast cancer, and has got really good care which is probably down to research and funding in to new treatments.
It's September the 13th, this 10k, and since it's hilly I'm aiming to run at least half of it, and walk when I need to. I'll have very kind running friends run with me to help with the 02, so we'll be a right motley crew.
Then fast forward to Friday 19th. I had a brilliant clinic appointment and shuttle walk test showing a MAHOOOOsive increase in my lung functions and x-ray looking great. I didn't desaturate at all walking very slowly, only a little bit at a normal pace, and then low 80's once brisk-jog pace. So considering that's on room air, not bad at all, and means that I need about half the amount of 02 to exercise than a few months back!
Unfortunately, having practically punched the air with chuffedness on friday, I could only throw my hands up in disbelief when I got a temperature of 38.2 on Saturday and then 39.5 on Sunday. Since my chest felt clear and my only complaint was feeling perhaps slightly more breathless (which you can get with fevers anyway), I would have been happy to try and keep it down with paracetamol and wait and see. And My consultant also said she was happy either way, but to be sensible... and by the end of Sunday, it appeared not so sensible to leave it as it wasn't staying down at all.
Poor Dad had to drive me up to LCH that evening to be admitted. I wasn't feeling awful but my temp was still 39 and my heart was really pounding with it, so we Started up some Iv antibiotics and fluids for Sunday night.
My temperature carried on being a complete pain in the buttock all week, still spiking up high and my chest x-ray looked a bit worse again, so I had a bronchoscopy (was heavily sedated this time lol) and we agreed that if it showed nothing and I was still the same, then we should do that open lung biopsy. This time I could kind of see that it was the only way to be sure of an organising pneumonia and not something that hasn't shown up elsewhere.
Surprise surprise, the bronch shed no light on the matter, so Monday I was carted off down to theatre and basically they cut in to your lung and take a bit out to have a good look at it and do loads of tests on it, then stitch it back together and you have a chest drain to keep the lung inflated while it mends. So an exciting few days on the High Dependancy Unit... I don't remember much of the first day and mostly slept although apparently made the staff run about a bit with my breathing straight after surgery. Probably down to asthma, but they had to put the breathing tube back in again lol... The next day I was up and able to walking around a bit with the physio and all my stands and pumps and general paraphenalia. And then yesterday, out came the pump, lung stayed up very nicely and up I popped back to CFU.
The very early initial results have shown some sort of fungal problem although it's not definate, but I've been started on Voriconazole anyway. I've also been on my old friend, hydrocortisone IV since monday. 300mg a day. Look like a hamster. Weigh 46 kg now compared to 41 on Monday. Make it stop!!
I'm still feeling a bit shattered probably because I'm taking stronger painkillers and they do knock you out if you aren't used to them... but in terms of pain it's not that bad today. Just a bit tweaky and strained if I'm in certain positions. I thought that the incision would be smaller so I was quite surprised to see a 2-3 inch scar across my back. It seems to be just low enough that most tops would cover it though!
I'll do a bit more updating later when I might know a bit more too. Will probably sleep alot again... yawn. xxx
Monday 1 June 2009
PB to boast, followed by PB on toast
Okay, so the fact that I had toast and peanut butter afterwards was quite irrelevant but it rhymed so... ner.
Twas 24 MINUTES!! And a fairly comfortable 24 minutes too. I had expected it to be a fairly nondescript session, as I was tired from a late night before. I set myself the task of just doing 20 minutes as this is only 2 minutes less than my previous best anyway, but when I'd done that I was absolutely fine so it seemed churlish not to carry on. At 22 minutes I was pretty tired and had planned to stop, but sinceI was only halfway through a really good song on the IPOD (Boys, boys, boys by Lady gaga) and wasn't about to collapse or anything, I just pushed on a tidgey bit further. Reee-sult.
I'd thought that we would to the gym and I'd get a weight session but no-one was about to play squash with Dad so there was no point going over. I did a walk with Mumsy later.
The legs have recovered perfectly today but I decided that Monday will now be my "two walks" day and then tuesday through to thursday, plus saturdays and sundays will be runners.
So two 3 milers today for a nice bit - o - mileage.
And yes, the PB on toast was good too, an ideal calorie replacement for the hard core seshomondos. Speaking of which, bloddy calories... obviously still not enough going in, I've lost more friggin weight. Only a kg... but erm, was meant to put on a bit for next clinic and now I can see more of their effing downwards arrows on my weight chart and more "how many fresubins are you having". Stupid fresubins. They may be 400 kcal but they're so flipping filling I then can't eat a decent meal! I'd rather have the food than some lurid vegetable oil, sugar and milk protein concoction. Oh well, I'm not so skinny I can't do my running and I'm still looking well so I guess I'll take it with a pinch of salt (or two, nom nom nom).
I'll be back xxx
Twas 24 MINUTES!! And a fairly comfortable 24 minutes too. I had expected it to be a fairly nondescript session, as I was tired from a late night before. I set myself the task of just doing 20 minutes as this is only 2 minutes less than my previous best anyway, but when I'd done that I was absolutely fine so it seemed churlish not to carry on. At 22 minutes I was pretty tired and had planned to stop, but sinceI was only halfway through a really good song on the IPOD (Boys, boys, boys by Lady gaga) and wasn't about to collapse or anything, I just pushed on a tidgey bit further. Reee-sult.
I'd thought that we would to the gym and I'd get a weight session but no-one was about to play squash with Dad so there was no point going over. I did a walk with Mumsy later.
The legs have recovered perfectly today but I decided that Monday will now be my "two walks" day and then tuesday through to thursday, plus saturdays and sundays will be runners.
So two 3 milers today for a nice bit - o - mileage.
And yes, the PB on toast was good too, an ideal calorie replacement for the hard core seshomondos. Speaking of which, bloddy calories... obviously still not enough going in, I've lost more friggin weight. Only a kg... but erm, was meant to put on a bit for next clinic and now I can see more of their effing downwards arrows on my weight chart and more "how many fresubins are you having". Stupid fresubins. They may be 400 kcal but they're so flipping filling I then can't eat a decent meal! I'd rather have the food than some lurid vegetable oil, sugar and milk protein concoction. Oh well, I'm not so skinny I can't do my running and I'm still looking well so I guess I'll take it with a pinch of salt (or two, nom nom nom).
I'll be back xxx
Sunday 24 May 2009
The grasshopper has landed.
Well, it's official - I OWN A CAR!!! We went over to Guildford yesterday and smuggled him away in all his lime green splendorrr.
I've driven in it twice and although the first time was shakey as I've been learning in a diesel and Baz takes petrol, so my clutch control suffered a bit at first!! Today was great though, no problems now I've got used to his revvage. ;-)
I'm also totally psyched to tell yas that this morning I ran for 22 minutes non-stop. Then 1 x 2 minutes as well. So I've actually ran for 24 minutes today!! Bloody brilliant feeling and although this was on 9 lpm O2, I feel that I can start cutting down on this a bit more even for longer intervals. I feel better having the 8-9 lpm for the longest run as it's after a while that I seem to still get hypoxic, but I think I'm now at the stage where 4-6 lpm would be plenty for runs up to 10 minutes. So HA! Take that, hypoxia! You won't be beating moi.
Then to make my working outness ultra-enhanced, I got to go over the gym (I drove Daddio over, hehe) and since I had clearly done my cardio for today, I made it a pure weights/ core stability session. So a good 40 minutes of hard full body weight work, followed by crunches, side crunches, side leg raises, planks ect to work those core musceys. Really enjoyed it and I didn't even bother to TAKE oxygen with me since it was just short reps, no cardio, so just had a 'normal person workout' with no tubes! lol.
I did also have gym session yesterday, which I did 35 minutes cycling, 10 minutes elliptical and stretches.
All in all, a blardy good weekends worth of training which I think I'll be reaping the benefits from. Oh I'll reap them big time baby.
Righty, that's all for now, as always hope you're guten xxx
I've driven in it twice and although the first time was shakey as I've been learning in a diesel and Baz takes petrol, so my clutch control suffered a bit at first!! Today was great though, no problems now I've got used to his revvage. ;-)
I'm also totally psyched to tell yas that this morning I ran for 22 minutes non-stop. Then 1 x 2 minutes as well. So I've actually ran for 24 minutes today!! Bloody brilliant feeling and although this was on 9 lpm O2, I feel that I can start cutting down on this a bit more even for longer intervals. I feel better having the 8-9 lpm for the longest run as it's after a while that I seem to still get hypoxic, but I think I'm now at the stage where 4-6 lpm would be plenty for runs up to 10 minutes. So HA! Take that, hypoxia! You won't be beating moi.
Then to make my working outness ultra-enhanced, I got to go over the gym (I drove Daddio over, hehe) and since I had clearly done my cardio for today, I made it a pure weights/ core stability session. So a good 40 minutes of hard full body weight work, followed by crunches, side crunches, side leg raises, planks ect to work those core musceys. Really enjoyed it and I didn't even bother to TAKE oxygen with me since it was just short reps, no cardio, so just had a 'normal person workout' with no tubes! lol.
I did also have gym session yesterday, which I did 35 minutes cycling, 10 minutes elliptical and stretches.
All in all, a blardy good weekends worth of training which I think I'll be reaping the benefits from. Oh I'll reap them big time baby.
Righty, that's all for now, as always hope you're guten xxx
Friday 22 May 2009
Pimp my LUNG FUNCTION !!!!! :-D
112%!!!!! WHOOOOOO >falls off of proverbial chair<
Can you tell that clinic went well today?! Yep, blows were 112% up from 85% just one month ago, and get this - my gas transfer is now 59%!!!! Up from 36%!!! No wonder I've been needing less oxygen and running so much further these past couple of weeks. Something has started working seriously well ;-)
My blood gases were also almost normal! Only like, 0.7 points to go before I'm normal. (Well, as far as gases go lol) I'm so pleased about today I practically skipped out of the hospital and to be honest, would have kissed my Doctor if a) she weren't female and b) it wasn't quite innapropriate. Still, what I'm saying is that I'm blinking chuffed with things and I don't think I'd be in that position without my brilliant Doctors and Physios.
Obviously I am really proud that I've come along so much because I've put in alot of hard work too. It's totally paying off in terms of my overall well being and getting my lung volumes up so high again.
Now all I need to do is keep this thang going and hopefully keep getting better and better! Weight still an issue so they're pushing more supplements but to be honest I think if I can achieve what I have done with my lungs in the past few months, then gaining a few pounds isn't that hard compared... or it shouldn't be.
Workouts have also gone well this week, most days have been 5 miles in total, with 10 minutes running in various length intervals. I had a day off running today, just walked but still covered 4-5 miles.
Tomorrow will be 3 mile walk and 3x2 minute runs, quite easy in preparation for Sunday - the 'long run' lol. Which I'll be aiming for 18 minutes non stop. All I can say is BRING. IT. ON.
xxx
Can you tell that clinic went well today?! Yep, blows were 112% up from 85% just one month ago, and get this - my gas transfer is now 59%!!!! Up from 36%!!! No wonder I've been needing less oxygen and running so much further these past couple of weeks. Something has started working seriously well ;-)
My blood gases were also almost normal! Only like, 0.7 points to go before I'm normal. (Well, as far as gases go lol) I'm so pleased about today I practically skipped out of the hospital and to be honest, would have kissed my Doctor if a) she weren't female and b) it wasn't quite innapropriate. Still, what I'm saying is that I'm blinking chuffed with things and I don't think I'd be in that position without my brilliant Doctors and Physios.
Obviously I am really proud that I've come along so much because I've put in alot of hard work too. It's totally paying off in terms of my overall well being and getting my lung volumes up so high again.
Now all I need to do is keep this thang going and hopefully keep getting better and better! Weight still an issue so they're pushing more supplements but to be honest I think if I can achieve what I have done with my lungs in the past few months, then gaining a few pounds isn't that hard compared... or it shouldn't be.
Workouts have also gone well this week, most days have been 5 miles in total, with 10 minutes running in various length intervals. I had a day off running today, just walked but still covered 4-5 miles.
Tomorrow will be 3 mile walk and 3x2 minute runs, quite easy in preparation for Sunday - the 'long run' lol. Which I'll be aiming for 18 minutes non stop. All I can say is BRING. IT. ON.
xxx
Monday 18 May 2009
A mile-and-a-half-stone plus half a mile! Ahem - yeah, two miles.
Wheyyyy! Sunday was, as always, the day of reckoning in terms of training for me. I always aim to increase my longest run of the week by about 2 minutes, and also increase the longest interval by at least a minute.
I was all worked up thinking that my legs felt tired and that I would only manage 10-12 minutes without stopping and that it would be a pretty tedious and mundane session.
I totally changed when I got warmed up and got running though and managed a full 16 minutes without stopping! I then did 2 x 2 minutes, meaning that I did TWENTY minutes in total of running in the session!! This has been something that I've wanted to get to for a while now so it felt really fab. My next short term goal will be to run for 20 minutes continuously, which will really be something. And I think I should be able to manage that in the next few weeks. At 6 miles an hour, this is 2 miles so I'll be properly chuffed if I can do that and it'll be real proof of how far things have come along.
I then did a 3 mile walk with Mum later in the day. Surprisingly, my legs didn't feel very tired at all today and I did a session of 4 x 2 min runs with 20 minutes walking in and around on the treadmill, plus another 3 mile walk this evening.
I still don't have very tired legs, but since I've run for 4 days consecutively I'll have an easy day tomorrow with a couple of walks to get the mileage, but no treadmill sessions.
I'll run again on wednesday, probably 3 x 4 minutes, and as always keep up with the long walks.
In other newbydews, I've actually booked my driving test for July 16th and will proceed to poo myself up until that time. Exciting stuff though to think I may be roadtripping away by August!!
Erm... what else... I made a pretty mean curry tonight. Well, not mean as in it made me cry but you know, would be mean to all the other curries in the playground because it knows it's the best, sort of mean. I later had an orange with weird white bits in the segments that tasted all dry and not that nice. The rest of the orange was pretty yum though.
Well, as you can see, my life revolves around treadmilling, curry, peeling dissapointing oranges, green cars, and pooing myself about issues surrounding being able to drive the green car. So erm, I'll shower you with more updates as soon as there is some. Which will be quite soon. Stay tuned. xxx
I was all worked up thinking that my legs felt tired and that I would only manage 10-12 minutes without stopping and that it would be a pretty tedious and mundane session.
I totally changed when I got warmed up and got running though and managed a full 16 minutes without stopping! I then did 2 x 2 minutes, meaning that I did TWENTY minutes in total of running in the session!! This has been something that I've wanted to get to for a while now so it felt really fab. My next short term goal will be to run for 20 minutes continuously, which will really be something. And I think I should be able to manage that in the next few weeks. At 6 miles an hour, this is 2 miles so I'll be properly chuffed if I can do that and it'll be real proof of how far things have come along.
I then did a 3 mile walk with Mum later in the day. Surprisingly, my legs didn't feel very tired at all today and I did a session of 4 x 2 min runs with 20 minutes walking in and around on the treadmill, plus another 3 mile walk this evening.
I still don't have very tired legs, but since I've run for 4 days consecutively I'll have an easy day tomorrow with a couple of walks to get the mileage, but no treadmill sessions.
I'll run again on wednesday, probably 3 x 4 minutes, and as always keep up with the long walks.
In other newbydews, I've actually booked my driving test for July 16th and will proceed to poo myself up until that time. Exciting stuff though to think I may be roadtripping away by August!!
Erm... what else... I made a pretty mean curry tonight. Well, not mean as in it made me cry but you know, would be mean to all the other curries in the playground because it knows it's the best, sort of mean. I later had an orange with weird white bits in the segments that tasted all dry and not that nice. The rest of the orange was pretty yum though.
Well, as you can see, my life revolves around treadmilling, curry, peeling dissapointing oranges, green cars, and pooing myself about issues surrounding being able to drive the green car. So erm, I'll shower you with more updates as soon as there is some. Which will be quite soon. Stay tuned. xxx
Friday 15 May 2009
Energy gels, tired legs and a car named Basil
Howdy doody,
Well, I've got to say that there's not an awful lot to report recently... things are pretty busy but steady.
I've been doing 6-10 minutes of jogging most days, as well as 2-4 mile walks, averaging 5 miles a day on foot. Which is very good, although I've not really managed to cut down on the o2 much yet as the breathlessness seems stable too. As in, definately never getting worse, but also not a great deal better during exercise. Still, I'm definately okay at rest bar the odd moment, and still feeling well.
I did have a funny turn the other day though... which I'm putting down to tiredness from a late night (babysitting) and loads of activity. I basically felt like a leadweight all day, and at one point, when no one was about, just had a lie down on the floor in the hallway. Couldn't be arsed to move to a more sensible lying down spot, so erm, the floor did the job. Weird. After a good nights sleep and also plenty of high carb snacks in the evening, I was back to my old self! Needless to say, that was my 'easy' day this week, with just 3 miles gentle walking. I've taken the precaution of either an energy gel or a small handful of sweets (naughty naughty) a bit before sessions as I think I need that burst of energy to aid good glycogen stores and keep up the fuel, plus I could do with some sneaky calories anyway.
I'll admit that the running interval session today felt a bit of an effort - my legs were a bit tweaky and heavy, and I was a little bit more brethless than usual, perhaps due to the humidity today... I could really do with a gym session to take that impact down for a day - hopefully tomorrow I'll get over there.
I'm rather showy-offingly proud to report that I am getting a CAR next week. Hooo yes. A new ford fiesta zetec in a pretty fabulous green colour.
Naturally, then, I'm calling him Basil. Baz will also be acceptable. Along with Shaz (Sharron, my trusty and very loud nebuliser) it's quite the smashing name duo, no?
I haven't got my licence yet, but I'll be able to learn in Basil between lessons. Speed things up a bit I hope!
I have a week till clinic... can't believe how quickly it comes round. And I think they'll be fairly happy with things, I expect my blows to be great and blood gases stable if not better, but there's the pressing issue of having not gained weight yet... still 42-43 by my scales so no different to last clinic although 1kg up from March. It's just sort of... not budging anymore even though I feel like I'm eating loads. Oh well, my overall health is flipping great compared so I'm not going to obsess over it.. just maybe a few more calshakes this week ;-D
So erm, how boring of me, really! Sorry for lack of progress of late and hope you're all doing well. Blogging out... x
Well, I've got to say that there's not an awful lot to report recently... things are pretty busy but steady.
I've been doing 6-10 minutes of jogging most days, as well as 2-4 mile walks, averaging 5 miles a day on foot. Which is very good, although I've not really managed to cut down on the o2 much yet as the breathlessness seems stable too. As in, definately never getting worse, but also not a great deal better during exercise. Still, I'm definately okay at rest bar the odd moment, and still feeling well.
I did have a funny turn the other day though... which I'm putting down to tiredness from a late night (babysitting) and loads of activity. I basically felt like a leadweight all day, and at one point, when no one was about, just had a lie down on the floor in the hallway. Couldn't be arsed to move to a more sensible lying down spot, so erm, the floor did the job. Weird. After a good nights sleep and also plenty of high carb snacks in the evening, I was back to my old self! Needless to say, that was my 'easy' day this week, with just 3 miles gentle walking. I've taken the precaution of either an energy gel or a small handful of sweets (naughty naughty) a bit before sessions as I think I need that burst of energy to aid good glycogen stores and keep up the fuel, plus I could do with some sneaky calories anyway.
I'll admit that the running interval session today felt a bit of an effort - my legs were a bit tweaky and heavy, and I was a little bit more brethless than usual, perhaps due to the humidity today... I could really do with a gym session to take that impact down for a day - hopefully tomorrow I'll get over there.
I'm rather showy-offingly proud to report that I am getting a CAR next week. Hooo yes. A new ford fiesta zetec in a pretty fabulous green colour.
Naturally, then, I'm calling him Basil. Baz will also be acceptable. Along with Shaz (Sharron, my trusty and very loud nebuliser) it's quite the smashing name duo, no?
I haven't got my licence yet, but I'll be able to learn in Basil between lessons. Speed things up a bit I hope!
I have a week till clinic... can't believe how quickly it comes round. And I think they'll be fairly happy with things, I expect my blows to be great and blood gases stable if not better, but there's the pressing issue of having not gained weight yet... still 42-43 by my scales so no different to last clinic although 1kg up from March. It's just sort of... not budging anymore even though I feel like I'm eating loads. Oh well, my overall health is flipping great compared so I'm not going to obsess over it.. just maybe a few more calshakes this week ;-D
So erm, how boring of me, really! Sorry for lack of progress of late and hope you're all doing well. Blogging out... x
Sunday 10 May 2009
PB in so many forms. All good.
Hola.
Things have been pretty kewl since my last blogfest. Mostly nice things like guests for dinner and loads of training :-)
Funnily enough, I noticed that the day after the shuttle test, where I obviously did stuff with quite low sats for a short time, I had loads of stiffness in my calves, I wonder if it was anything to do with lactic... or probably just co-incidence... I'll try not to blame everything on exercise tests!
Anywho, I was still up nice and early at 7.30 on saturday for a short (15 min) walk with 2 x 4 mins jogging before breakfast and cheesecake making (for dinner party) before heading off to the gym. I had the luxury of an empty gym bar two ladies there for the 1st five minutes of my session! Free run or what? I had a total mansized workout too: 35 minutes moderate-hard cycling, 20 minutes quite intense elliptical trainer, and I think 8 minutes slow walk to cool down. On top of the morning 'recovery' session, this was a very good day.
I was reallly tired by 10pm so once the guests had said goodbye at 11 I was off! I was then up and about at 8.30 this morning for a 3 mile walk with Mum, then a pretty chillaxed day until my afternoon session... Get. This.
I warmed up with a walk for 8 minutes, then did 12 (!!) yes, TWELVE minutes without stopping of jogging heehheeeee. Pretty darm chuffed. And then decided to just properly kick some treadmill butt and do another 6 minutes! So Ive had 18 minutes of jogging today which has beaten last sundays previous best by 4 minutes! And I wasn't tooo knackered either. The whole session with recoveries and warm up/cool down was a solid 34 minutes, which I reckon covered about 2-2.5 miles. So nearly 5.5 miles today!! PB party over here.
Actually, I divulge in to telling you that the post title is a result of the fact that my jogging PB was partially attributed to my PB (peanut butter) feast at bar- reakfast and la-unch. I had PB in my porridge and PB on my toast tooo... I like peanut butter. Actually I probably get through almost quarter of a jar a day most days. >How american< Good energy food I guess!
Right... in other news, I have become a gardener. Mum is always gardening and is actually quite good at it, some genes which she did not pass on to moi. Nevertheless, I felt like helping out and was assigned to job of sowing the lettuce and basil seeds. And also the challenge of making some improvised faux propagators. (Clear, breathable covers for seed trays/pots to keep the insects out and the warmth in)
I got creative with some clingfilm and a pencil to poke holes in it, then skipped off to water the other plants and feed them. A short while later, whilst sipping tea and admiring the garden which I was now taking partial credit for... a Mum goes "Why on EARTH is there pieces of clingfilm blowing about in my garden?!"
It was now that I realised. Wrapping up the plant pots like my dinner, without fastening the film, had resulted in my carefully fashioned covers being swept away in the wind like synthetic tumbleweed. And I never thought it would be me who would run around the garden chasing bits of clingfilm around the garden shouting "MY PROPOGATORSSSSS!!" I did catch them and firmly secure them back with some rubber bands though, and all was well.
Well, you can see I've had MORE than enough excitement for one weekend. Tomorrow morning will be a little 2 miler first thing, and then another in the evening. Gonna give these leggies a little respite before more running!! XXX
Things have been pretty kewl since my last blogfest. Mostly nice things like guests for dinner and loads of training :-)
Funnily enough, I noticed that the day after the shuttle test, where I obviously did stuff with quite low sats for a short time, I had loads of stiffness in my calves, I wonder if it was anything to do with lactic... or probably just co-incidence... I'll try not to blame everything on exercise tests!
Anywho, I was still up nice and early at 7.30 on saturday for a short (15 min) walk with 2 x 4 mins jogging before breakfast and cheesecake making (for dinner party) before heading off to the gym. I had the luxury of an empty gym bar two ladies there for the 1st five minutes of my session! Free run or what? I had a total mansized workout too: 35 minutes moderate-hard cycling, 20 minutes quite intense elliptical trainer, and I think 8 minutes slow walk to cool down. On top of the morning 'recovery' session, this was a very good day.
I was reallly tired by 10pm so once the guests had said goodbye at 11 I was off! I was then up and about at 8.30 this morning for a 3 mile walk with Mum, then a pretty chillaxed day until my afternoon session... Get. This.
I warmed up with a walk for 8 minutes, then did 12 (!!) yes, TWELVE minutes without stopping of jogging heehheeeee. Pretty darm chuffed. And then decided to just properly kick some treadmill butt and do another 6 minutes! So Ive had 18 minutes of jogging today which has beaten last sundays previous best by 4 minutes! And I wasn't tooo knackered either. The whole session with recoveries and warm up/cool down was a solid 34 minutes, which I reckon covered about 2-2.5 miles. So nearly 5.5 miles today!! PB party over here.
Actually, I divulge in to telling you that the post title is a result of the fact that my jogging PB was partially attributed to my PB (peanut butter) feast at bar- reakfast and la-unch. I had PB in my porridge and PB on my toast tooo... I like peanut butter. Actually I probably get through almost quarter of a jar a day most days. >How american< Good energy food I guess!
Right... in other news, I have become a gardener. Mum is always gardening and is actually quite good at it, some genes which she did not pass on to moi. Nevertheless, I felt like helping out and was assigned to job of sowing the lettuce and basil seeds. And also the challenge of making some improvised faux propagators. (Clear, breathable covers for seed trays/pots to keep the insects out and the warmth in)
I got creative with some clingfilm and a pencil to poke holes in it, then skipped off to water the other plants and feed them. A short while later, whilst sipping tea and admiring the garden which I was now taking partial credit for... a Mum goes "Why on EARTH is there pieces of clingfilm blowing about in my garden?!"
It was now that I realised. Wrapping up the plant pots like my dinner, without fastening the film, had resulted in my carefully fashioned covers being swept away in the wind like synthetic tumbleweed. And I never thought it would be me who would run around the garden chasing bits of clingfilm around the garden shouting "MY PROPOGATORSSSSS!!" I did catch them and firmly secure them back with some rubber bands though, and all was well.
Well, you can see I've had MORE than enough excitement for one weekend. Tomorrow morning will be a little 2 miler first thing, and then another in the evening. Gonna give these leggies a little respite before more running!! XXX
Friday 8 May 2009
Much ado about puffing
Not reaaallly! The old exercise test went okay today, ish.
I arrived quite early to allow for a leisurely change in to my hardcore fitness gear and a nervous wee (the wee bit before the dressing bit obviously, I wasn't that nervous). Then twiddled my thumbs for a bit while the Supernintendant Physio supernintended around doing general supernintendery things. Which included getting the CD player out of the storecupboard. Now, I at first thought that she was getting it out so that we could have music on whilst I hopped on the treadmill or bike ect... how WRONG I was. No, no, no... apparently I like grabbing sticks at the wrong end. What we were actually doing today was, in modified form, the bleep test. Memories of PE lessons came flooding back. I thought that I'd be just walking and running on the treadmill and doing sats but apparently that's not really the most controlled way to assess and reassess my fitness/ o2 levels at exact intervals, so ho hum.
It was in fact a VERY modified bleep test called the Incremental Shuttle Walking Test (ISWT). Each shuttle is 10 metres, and starts very slow, then increases every minute so you're jogging. There's 12 levels, and I'm proud to say I completed it. Because it's quite easy.
The test certainly puts the mental in incremental... snails are faster. However it was also difficult to keep turning round every 10 metres and wait for the bleep or try and keep up with it ect ect.
My sats? Drum roll... much the same given that this was not a maximal test by any means *only jogging for about 3 mins). They didn't start going down much untill 4-5 minutes in, once at a mild-moderate walking pace. Once the walk was brisk and then a bit later fast enough to jog, my sats average 82, with the lowest being 78. Low, but this was was room air. It does indicate that I still need just the 2 litres for walking moderately for any more than a few minutes, and that I will still be sticking on the 10litres for longer running intervals (of more than 3 minutes). However, I said that I would be comfortable cutting the o2 down to 6 litres whilst I do short intervals of 2 minutes, because I don't start having really low sats untill a few minutes in.
From this, the plan is to repeat this same test a couple of times in a few weeks and see how things improve, then once they plateau, we'll do the oxygen titration test again.
This is the treadmill one, where I'll simulate a normal to intense workout and we'll see how much o2 I need to maintain sats above 88%. I last did this as an inpatient, and my sats were 81% after 4 minutes jogging on 10 litres o2. So I'll look forward to seeing those figures a bit higher!!
I also nipped up to the ward to get my steroid shot done. Always good to get these fine buttocks out. And that was it! All over and done with in less than 1 1/2 hours! Off homey again and have had a shorter walk totally 3.5 miles today. Because I'm doing an early jog session tomorrow, followed by some cross training in the gym. So I'll be a bit shattered I think!
More reports to come... bet you can't wait xxx
I arrived quite early to allow for a leisurely change in to my hardcore fitness gear and a nervous wee (the wee bit before the dressing bit obviously, I wasn't that nervous). Then twiddled my thumbs for a bit while the Supernintendant Physio supernintended around doing general supernintendery things. Which included getting the CD player out of the storecupboard. Now, I at first thought that she was getting it out so that we could have music on whilst I hopped on the treadmill or bike ect... how WRONG I was. No, no, no... apparently I like grabbing sticks at the wrong end. What we were actually doing today was, in modified form, the bleep test. Memories of PE lessons came flooding back. I thought that I'd be just walking and running on the treadmill and doing sats but apparently that's not really the most controlled way to assess and reassess my fitness/ o2 levels at exact intervals, so ho hum.
It was in fact a VERY modified bleep test called the Incremental Shuttle Walking Test (ISWT). Each shuttle is 10 metres, and starts very slow, then increases every minute so you're jogging. There's 12 levels, and I'm proud to say I completed it. Because it's quite easy.
The test certainly puts the mental in incremental... snails are faster. However it was also difficult to keep turning round every 10 metres and wait for the bleep or try and keep up with it ect ect.
My sats? Drum roll... much the same given that this was not a maximal test by any means *only jogging for about 3 mins). They didn't start going down much untill 4-5 minutes in, once at a mild-moderate walking pace. Once the walk was brisk and then a bit later fast enough to jog, my sats average 82, with the lowest being 78. Low, but this was was room air. It does indicate that I still need just the 2 litres for walking moderately for any more than a few minutes, and that I will still be sticking on the 10litres for longer running intervals (of more than 3 minutes). However, I said that I would be comfortable cutting the o2 down to 6 litres whilst I do short intervals of 2 minutes, because I don't start having really low sats untill a few minutes in.
From this, the plan is to repeat this same test a couple of times in a few weeks and see how things improve, then once they plateau, we'll do the oxygen titration test again.
This is the treadmill one, where I'll simulate a normal to intense workout and we'll see how much o2 I need to maintain sats above 88%. I last did this as an inpatient, and my sats were 81% after 4 minutes jogging on 10 litres o2. So I'll look forward to seeing those figures a bit higher!!
I also nipped up to the ward to get my steroid shot done. Always good to get these fine buttocks out. And that was it! All over and done with in less than 1 1/2 hours! Off homey again and have had a shorter walk totally 3.5 miles today. Because I'm doing an early jog session tomorrow, followed by some cross training in the gym. So I'll be a bit shattered I think!
More reports to come... bet you can't wait xxx
Monday 4 May 2009
Happy Mondays, many goings on to chew over.
Another action packed week here - just croizy. Firstly I have had my first driving lesson in almost a YEAR! Argh... I can't believe it had been so long but this is another step in the right direction getting things sorted and getting me back on track (well road actually).
I'm with a new instructor who lives just up the road which is convenient, and the first lesson went brilliantly given that I thought I'd forgotten it all. No major hiccups at all, just road positioning and a few clicky gear changes.
I also went to sit for the kids up the road three times this week, which is never very hard work at all but they are really generous with paying ;-) so that'll help alot with paying for driving.
I moved out of my house at uni this week. I went up on wednesday morning and then Dad came to pick me and my mountain of 'stuff' up in the car on thursday. It was lovely to see the girls again and a big weight off my shoulders to get all my stuff out of there a month early, although I wasn't totally prepared for the sheer amount of it, and have been sorting and unpacking ever since!
And in more important news, the exercise this week has gone fantastically! Tuesday I think I did a few miles with just a couple of short jog intervals. Wednesday I went to the gym at uni and had a pretty good session: 35 mins moderate cycling, 15 minutes elliptical trainer and a 20 minute walk plus stretches.
On thursday, I just had a 2 mile walk as I was shattered from the efforts of the past two days! Which meant that Friday I was quite refreshed and ready for a good run. I did a 3 mile walk in the morning and then in the evening had a 30 minute treadmill sesh, which included 12 minutes worth of jogging at a higher incline then usual. I broke it into 1 x 4 minutes, 2 x 3 minutes, and 1 x 2 minutes. And obviously warm up, recovery and cool down was walking. This meant that I covered about 5 miles in the day! The best I've done since I was last well!
Saturday I thought I'd take it a little more easy to make sure I didn't get too tired or achey. I had a 2.5 mile walk with my family, so quite a relaxed pace to allow for chatting! Then later it was 16 minutes on Blacky the tread - including 6 minutes of running as 2 x 2 minutes. I did these slightly faster than usual as well since they were short bursts (get me, speed sessions lol). So a total of no more than 4 miles I reckon.
Then yesterday... A DOUBLE PB!! I was well happy with this lot: 3 mile walk in the morning, then 30 minute sesh in the afternoon with a 10 minute run!!! No stopping for 10 minutes and felt quite good too although a bit tired. I then had 3 minutes walking recovery and went on to do 1 x 4 minutes! So another fairly long interval and also a grand total of 14 minutes! Followed by a good cool down and stretch. Hheheheehehehe. Pretty good that.
The other interesting thing is that over the past week, I've felt that the 10lpm of o2 is doing slightly more for me than it was before - as in even though I still breathe very hard during the runs, I don't feel much lactic building up like before. I think this is what allowed me to run for longer and also may mean that I'm not so hypoxic by the end of a run now, so am not going so anaerobic!
I'll know if this theory is true on Friday, when I go for a reassessment to see how my oxygen levels are now whilst running. I'm not sure if I'll start off without just to get a baseline, or if we'll just titrate the O2 based on sats throughout a run.
Hopefully we'll be able to reduce the O2 a bit for my sessions soon. I'll not be too dissapointed if sats are still too low though, because I'm feeling so good compared now that it seems stupid to get depressed over numbers. Fingers crossed for good results on Friday!
I'm definately feeling yesterdays efforts (and indeed the whole weeks') in my legs, so today is just an easy day. No runs, but a 3 miles walk this morning and another 1-2 miles later on. All at a moderate pace and on 2 litres 02.
Laters xxx
I'm with a new instructor who lives just up the road which is convenient, and the first lesson went brilliantly given that I thought I'd forgotten it all. No major hiccups at all, just road positioning and a few clicky gear changes.
I also went to sit for the kids up the road three times this week, which is never very hard work at all but they are really generous with paying ;-) so that'll help alot with paying for driving.
I moved out of my house at uni this week. I went up on wednesday morning and then Dad came to pick me and my mountain of 'stuff' up in the car on thursday. It was lovely to see the girls again and a big weight off my shoulders to get all my stuff out of there a month early, although I wasn't totally prepared for the sheer amount of it, and have been sorting and unpacking ever since!
And in more important news, the exercise this week has gone fantastically! Tuesday I think I did a few miles with just a couple of short jog intervals. Wednesday I went to the gym at uni and had a pretty good session: 35 mins moderate cycling, 15 minutes elliptical trainer and a 20 minute walk plus stretches.
On thursday, I just had a 2 mile walk as I was shattered from the efforts of the past two days! Which meant that Friday I was quite refreshed and ready for a good run. I did a 3 mile walk in the morning and then in the evening had a 30 minute treadmill sesh, which included 12 minutes worth of jogging at a higher incline then usual. I broke it into 1 x 4 minutes, 2 x 3 minutes, and 1 x 2 minutes. And obviously warm up, recovery and cool down was walking. This meant that I covered about 5 miles in the day! The best I've done since I was last well!
Saturday I thought I'd take it a little more easy to make sure I didn't get too tired or achey. I had a 2.5 mile walk with my family, so quite a relaxed pace to allow for chatting! Then later it was 16 minutes on Blacky the tread - including 6 minutes of running as 2 x 2 minutes. I did these slightly faster than usual as well since they were short bursts (get me, speed sessions lol). So a total of no more than 4 miles I reckon.
Then yesterday... A DOUBLE PB!! I was well happy with this lot: 3 mile walk in the morning, then 30 minute sesh in the afternoon with a 10 minute run!!! No stopping for 10 minutes and felt quite good too although a bit tired. I then had 3 minutes walking recovery and went on to do 1 x 4 minutes! So another fairly long interval and also a grand total of 14 minutes! Followed by a good cool down and stretch. Hheheheehehehe. Pretty good that.
The other interesting thing is that over the past week, I've felt that the 10lpm of o2 is doing slightly more for me than it was before - as in even though I still breathe very hard during the runs, I don't feel much lactic building up like before. I think this is what allowed me to run for longer and also may mean that I'm not so hypoxic by the end of a run now, so am not going so anaerobic!
I'll know if this theory is true on Friday, when I go for a reassessment to see how my oxygen levels are now whilst running. I'm not sure if I'll start off without just to get a baseline, or if we'll just titrate the O2 based on sats throughout a run.
Hopefully we'll be able to reduce the O2 a bit for my sessions soon. I'll not be too dissapointed if sats are still too low though, because I'm feeling so good compared now that it seems stupid to get depressed over numbers. Fingers crossed for good results on Friday!
I'm definately feeling yesterdays efforts (and indeed the whole weeks') in my legs, so today is just an easy day. No runs, but a 3 miles walk this morning and another 1-2 miles later on. All at a moderate pace and on 2 litres 02.
Laters xxx
Monday 27 April 2009
I like my umbrellas sturdy, my cappucinos sugary and my gym sessions oxygenated.
Can't believe that monday has rolled round again so sneakily and it's nearly the end sof the month again. But I'm loving all this springing in to action I seem to be doing, and actually feeling like I achieve something with my days! Earlyish awakening this not-so-fine morning as we were heading in to town to get a couple of kiddies birthday gifts and have a wander/ get stuff for dinrar. And also always manage to fit a starbucks in... ahem.
Fowl weather of course so no outsidey walkies expect for around Chichester high street, fighting the wind with an umbrella. Also I didn't have a morning sesh as my legs were frankly too tired and achey from yesterday and I figured I'd get a fastish walking session on Blacky the tread later on.
I got slightly paranoid that I woudn't be able to get anything done at all as my hips went quite clicky and a bit ouch just walking round town, so I figured the longer distanced walking every day since getting home probably warranted a break off the impact stuff. My luck arrived when Dad mentioned that he was playing squash at half 3 so I scooted over to the gym then. A perfect opportunity for a decent cardio and weighty session with no strain on my joints.
I stuck the tank on 3lpm and didn't go above that as I'd planned an easier day anyway. It ended up being just over 30 minutes cycling at about 10mph, 10 minutes elliptical at a fair rate, then some core stability and situps, then a couple of sets of weights for my shoulders/back and quads, and finally a good stretch.
My legs are dog tired still but not painful at all, so I think I'll be fine to get a 25 minute walk and a 15 minute intervals sesh tomorrow. That'll cover about 3 miles. I'm babysitting tomorrow night too which will be nice! As I've not sat for this family since last year.
I was quite chuffed that the continuous coughing untill recently has provided one benefit - strong abs! I manage 100 crunches without much difficulty at all today and I have a 4 pack going... so now I'm not coughing my ring up, I'll have to stick with the old crunches to keep it there!
Also, I was ever so slightly nervous about going to the gym with the o2, but it was really silly when I think about it, as hardly anyone really looked or anything. Bottom line is never to worry about what you look like too much because actually everyone is probably more concerned with what they look like! And of course getting their workout done. Lol... one less thing to worry about.
Take it Kneesy. xxx
Fowl weather of course so no outsidey walkies expect for around Chichester high street, fighting the wind with an umbrella. Also I didn't have a morning sesh as my legs were frankly too tired and achey from yesterday and I figured I'd get a fastish walking session on Blacky the tread later on.
I got slightly paranoid that I woudn't be able to get anything done at all as my hips went quite clicky and a bit ouch just walking round town, so I figured the longer distanced walking every day since getting home probably warranted a break off the impact stuff. My luck arrived when Dad mentioned that he was playing squash at half 3 so I scooted over to the gym then. A perfect opportunity for a decent cardio and weighty session with no strain on my joints.
I stuck the tank on 3lpm and didn't go above that as I'd planned an easier day anyway. It ended up being just over 30 minutes cycling at about 10mph, 10 minutes elliptical at a fair rate, then some core stability and situps, then a couple of sets of weights for my shoulders/back and quads, and finally a good stretch.
My legs are dog tired still but not painful at all, so I think I'll be fine to get a 25 minute walk and a 15 minute intervals sesh tomorrow. That'll cover about 3 miles. I'm babysitting tomorrow night too which will be nice! As I've not sat for this family since last year.
I was quite chuffed that the continuous coughing untill recently has provided one benefit - strong abs! I manage 100 crunches without much difficulty at all today and I have a 4 pack going... so now I'm not coughing my ring up, I'll have to stick with the old crunches to keep it there!
Also, I was ever so slightly nervous about going to the gym with the o2, but it was really silly when I think about it, as hardly anyone really looked or anything. Bottom line is never to worry about what you look like too much because actually everyone is probably more concerned with what they look like! And of course getting their workout done. Lol... one less thing to worry about.
Take it Kneesy. xxx
Sunday 26 April 2009
Black is soo the new, er, black.
Heyhey,
No update lastnight as my laptop threw a hissyfit and was punished by being shut down for the night. However life went on and workouts were done and massages had (!).
Saturday, I had a morning sesh of walking for 25 minutes, a couple of km, with just one little jog for a minute. Which felt pretty good, then in the afternoon I did 2 miles outside at a good pace, just on 2litres 02. Such a nice day, I'm loving being able to do loads outside at the moment!
I had planned to go straight on Blacky for 10 minutes whilst I was warmed up and in my kit, a do my 5 minutes of intervals then, but as we got back, some friends, who I haven't see for an absolute age, popped in for a cup of tea untill early evening. After they headed off though, I did go back out (dinner was only just going on anyway), it just meant I had to warm up again! I did 1 x 3 minute interval and 2 x 1 minutes on the 10 litres. It felt a bit hard but I wasn't surprised given that I hadn't done any jogging really since leaving LCH. Over a week, so no wonder it took some getting used to!
THEN, I could hardly believe my luck when some other friends came for the evening, one of who is a fantastic physio and has sorted me out soo well when I thought I was permanently seized up and decrepped. I thought they were just over to watch the telly and have some drinks but Physio, true to form, had bought her new folding bench contraption, and despite a full day of pummelling clients was raring to go! Mum and Dads room was transformed into a make-do studio with massage table and away we went... I had over an hour of upper body massage and also going over some exercises to keep my posture in line, and as ever, felt so much better afterwards.
She could really tell the difference from last time I went to see her when I was still pretty bad and totally knotted up from the violent coughing, so that was really encouraging.
All refreshed and de-kinked, I had my first session after watching some of the marathon (with green eyes!)outside at midday, walking 3 miles in about 50 minutes, which felt pretty good.
Blacky was awoken early evening for 8 minutes total of jogging and nearly 10 in and around that of walking to recover. It definately felt easier than the day before, so I think my lungs and legs were opened up a bit.
Since the last two days have been 4 milers, I'll ease off a little tomorrow as the legs feel tired, and probably cover just 2 miles walking, and 1 during the more intense session.
Night! xxx
No update lastnight as my laptop threw a hissyfit and was punished by being shut down for the night. However life went on and workouts were done and massages had (!).
Saturday, I had a morning sesh of walking for 25 minutes, a couple of km, with just one little jog for a minute. Which felt pretty good, then in the afternoon I did 2 miles outside at a good pace, just on 2litres 02. Such a nice day, I'm loving being able to do loads outside at the moment!
I had planned to go straight on Blacky for 10 minutes whilst I was warmed up and in my kit, a do my 5 minutes of intervals then, but as we got back, some friends, who I haven't see for an absolute age, popped in for a cup of tea untill early evening. After they headed off though, I did go back out (dinner was only just going on anyway), it just meant I had to warm up again! I did 1 x 3 minute interval and 2 x 1 minutes on the 10 litres. It felt a bit hard but I wasn't surprised given that I hadn't done any jogging really since leaving LCH. Over a week, so no wonder it took some getting used to!
THEN, I could hardly believe my luck when some other friends came for the evening, one of who is a fantastic physio and has sorted me out soo well when I thought I was permanently seized up and decrepped. I thought they were just over to watch the telly and have some drinks but Physio, true to form, had bought her new folding bench contraption, and despite a full day of pummelling clients was raring to go! Mum and Dads room was transformed into a make-do studio with massage table and away we went... I had over an hour of upper body massage and also going over some exercises to keep my posture in line, and as ever, felt so much better afterwards.
She could really tell the difference from last time I went to see her when I was still pretty bad and totally knotted up from the violent coughing, so that was really encouraging.
All refreshed and de-kinked, I had my first session after watching some of the marathon (with green eyes!)outside at midday, walking 3 miles in about 50 minutes, which felt pretty good.
Blacky was awoken early evening for 8 minutes total of jogging and nearly 10 in and around that of walking to recover. It definately felt easier than the day before, so I think my lungs and legs were opened up a bit.
Since the last two days have been 4 milers, I'll ease off a little tomorrow as the legs feel tired, and probably cover just 2 miles walking, and 1 during the more intense session.
Night! xxx
Friday 24 April 2009
I make 4.30 pimms o'clock, but NOT budweiser o'clock.
Hi,
So er, apparently train carriage refreshment trolleys now keep a substantial quantity of lager cans in stock for any fine fellow who may want to wet his whistle of a sunny London afternoon. Thankyou, Southern rail, for coming up with yet another way of providing the city's substance dependant, overworked, weekend centered, violent, rude and alcohol fuelled nation with booze.
Call me a right snob, but I don't think it's that acceptable to be draining can after can of lager on the 4.30pm train on the way back from london, especially in your work clothes, when it's standing room only and everyone around you is forced to smell your breath, and when you're a bit of an oddball at the best of times... But anyway, it appears that's okay these days. Nice.
Anyway, I'll move on to the more pressing issue of LCH clinic in all it's glory. It was alright!! Many sighs of relief from the team who'd obviously thought I'd do a 'Michelle' and be in again within the week - and then I turned up all healthy looking and non-breathless (ish!). That showed them, hahaha.
My spirometry was 85%, so brilliant (up 24% from February) and I didn't do a gas transfer. Weight stable but predictably they want more kgs on for next time, physio well happy and chest clear, blood gases borderline but acceptable for me. PaO2 was 8 I think... normal's over 10 or something. But meh... we knew all that.
I didn't start back on any more meds yet, so life is still pretty easy without the colomycin nebbing. All I have to neb is pulmozyme once a day at the moment, then the rest is all pills and inhalers hehe. I'm now free for another 2 weeks, then I'll go and have the steroid jab, reassess o2 levels with exercise, and another check up. And then two weeks after that, then I'm hoping we'll go down to monthly or longer.
So all in all, very good! I'm pretty chuffed with that, so the plan is to carry on with what I'm doing for now, with the hope that in 2 weeks, I can get those oxygen requirements down!
Tomorrow I want to get a proper go on Blacky, so I'm aiming to get a morning session around 8.30, with 10 minutes at 3.5 mph, then 4 x 1 minute at 5mph, with 1-2 minutes walking recovery, then another 5 minutes at 3.5. All on a slight incline of course ;-) That'll be roughly 1.5 miles, so then in the afternoon, get another 2 in. Probably 30 minutes at 4mph. I'll probably be knackered!
xxx
So er, apparently train carriage refreshment trolleys now keep a substantial quantity of lager cans in stock for any fine fellow who may want to wet his whistle of a sunny London afternoon. Thankyou, Southern rail, for coming up with yet another way of providing the city's substance dependant, overworked, weekend centered, violent, rude and alcohol fuelled nation with booze.
Call me a right snob, but I don't think it's that acceptable to be draining can after can of lager on the 4.30pm train on the way back from london, especially in your work clothes, when it's standing room only and everyone around you is forced to smell your breath, and when you're a bit of an oddball at the best of times... But anyway, it appears that's okay these days. Nice.
Anyway, I'll move on to the more pressing issue of LCH clinic in all it's glory. It was alright!! Many sighs of relief from the team who'd obviously thought I'd do a 'Michelle' and be in again within the week - and then I turned up all healthy looking and non-breathless (ish!). That showed them, hahaha.
My spirometry was 85%, so brilliant (up 24% from February) and I didn't do a gas transfer. Weight stable but predictably they want more kgs on for next time, physio well happy and chest clear, blood gases borderline but acceptable for me. PaO2 was 8 I think... normal's over 10 or something. But meh... we knew all that.
I didn't start back on any more meds yet, so life is still pretty easy without the colomycin nebbing. All I have to neb is pulmozyme once a day at the moment, then the rest is all pills and inhalers hehe. I'm now free for another 2 weeks, then I'll go and have the steroid jab, reassess o2 levels with exercise, and another check up. And then two weeks after that, then I'm hoping we'll go down to monthly or longer.
So all in all, very good! I'm pretty chuffed with that, so the plan is to carry on with what I'm doing for now, with the hope that in 2 weeks, I can get those oxygen requirements down!
Tomorrow I want to get a proper go on Blacky, so I'm aiming to get a morning session around 8.30, with 10 minutes at 3.5 mph, then 4 x 1 minute at 5mph, with 1-2 minutes walking recovery, then another 5 minutes at 3.5. All on a slight incline of course ;-) That'll be roughly 1.5 miles, so then in the afternoon, get another 2 in. Probably 30 minutes at 4mph. I'll probably be knackered!
xxx
Thursday 23 April 2009
Sure it's big enough, but take a look at the location...
Alrighty,
Today was the big jour, we mosied over to Hampshire to pick up the treadmill. All went smoothly until we were shown in to the (obviously congenitally redundant) 'home gym', with a rather slim looking doorway and a pre-folded treadmill beckoning us sweetly.
Hands on Dad gets right in there and sets to work turning treaders on it's side for us to then lift through the (ever narrowing, indiana jones style) doorframe... and reveals the first, and hopefully only, major design flaw of the machine. The foldable front stand which has been kept in check by the weight of the rest of the machine now springs out, trapping Dads fingers between itself and the other bit of frame. Very, very ouch and it clapped on fast enough to break the skin so there we were, christening the treadmill with blood before we'd even known it five minutes. Now all it needs are some sweat and tears, which will probably be mine.
We did eventually manage to form a human straight jacket on it before shoving it in the the boot, with a small panic that the boot wouldn't close even though we'd measured it, and then said our goodbyes.
Blacky the treadmill (it's a Roger Black model) has now set up camp in the garage, at least for the time being for my extreme usage to commence.
Not much sooner had we got over the excitement of all this, but the oxygen man paid a surprise visit with six high flow portable cylinders and a trendy carrybag for them when I'm out and about... I had no idea that portable had been sorted as I was told that it'd just be another machine, so frankly it was like christmas had come early. Now I've got the option of doing faster walks outside (which of course I did to try it out today) and also using the gym. And not having two honking big machines running for the sessions.
Each cylinder holds 430 litres (!) of compressed O2, so would last for a couple of hours worth of brisk walking, or about 40 minutes of jogging. Good stuff. Today was a lighter day, just a couple of moderate paced miles outside, on 2litres. I think my legs felt the benefit as they weren't as tired during and after.
In the morrow I'm heading up to LCH for a quick check up, and I'm still feeling okay about it, should be no hassle. Just that journey... yawn.
Righto, I'll chatter tomorrow XXX
Today was the big jour, we mosied over to Hampshire to pick up the treadmill. All went smoothly until we were shown in to the (obviously congenitally redundant) 'home gym', with a rather slim looking doorway and a pre-folded treadmill beckoning us sweetly.
Hands on Dad gets right in there and sets to work turning treaders on it's side for us to then lift through the (ever narrowing, indiana jones style) doorframe... and reveals the first, and hopefully only, major design flaw of the machine. The foldable front stand which has been kept in check by the weight of the rest of the machine now springs out, trapping Dads fingers between itself and the other bit of frame. Very, very ouch and it clapped on fast enough to break the skin so there we were, christening the treadmill with blood before we'd even known it five minutes. Now all it needs are some sweat and tears, which will probably be mine.
We did eventually manage to form a human straight jacket on it before shoving it in the the boot, with a small panic that the boot wouldn't close even though we'd measured it, and then said our goodbyes.
Blacky the treadmill (it's a Roger Black model) has now set up camp in the garage, at least for the time being for my extreme usage to commence.
Not much sooner had we got over the excitement of all this, but the oxygen man paid a surprise visit with six high flow portable cylinders and a trendy carrybag for them when I'm out and about... I had no idea that portable had been sorted as I was told that it'd just be another machine, so frankly it was like christmas had come early. Now I've got the option of doing faster walks outside (which of course I did to try it out today) and also using the gym. And not having two honking big machines running for the sessions.
Each cylinder holds 430 litres (!) of compressed O2, so would last for a couple of hours worth of brisk walking, or about 40 minutes of jogging. Good stuff. Today was a lighter day, just a couple of moderate paced miles outside, on 2litres. I think my legs felt the benefit as they weren't as tired during and after.
In the morrow I'm heading up to LCH for a quick check up, and I'm still feeling okay about it, should be no hassle. Just that journey... yawn.
Righto, I'll chatter tomorrow XXX
Wednesday 22 April 2009
Gone are my LCH hobo-age days, I remain firmly put at my family abode
I nearly went all cringey and disbelieving when I saw that my last post was the 11th of this month. SH-HAME-FULL.
The last post was written from l'hopital shortly before I accidently reached my maximum dongle-download limit and thus was internetless. At the same time as the tellies in LCH bummed out and so there was nowt to do. Which all seems irrelevant now that I am smugly at home enjoying all the luxury homey goodies that come with.
I escaped on thursday, so it's nearly a week now, and I've felt perfectly well, not even a HINT of the cruddy chest or temperatures! That bronch was thankfully worth it as it grew some other bacteria that wasn't in my sputum samples and was resistant to the IVs I was on, so I went on a different antibiotic (pill) and so far, so good -I've hardly coughed at all, and have been walking about 3-4 miles every day outside (very slowly as no o2). This has been my exercise 'allowance' untill I pick up my treadmill tomorrow, how exciting, and get a 2nd machine delivered allowing me to have the 10lpm of o2 for jogging.
Basically the decision seems to have been made that I won't be having the portable o2 even for a little portion of my exercise, I'm guessing because of the amount I take and the expense of liquid cyclinders. So since I was going to have to get a treadmill for the jogging anyway, I'll be able to use the concentrator I've had since December, which goes up to 5lpm, plus another which will be delivered next week, hooked up to the same driveline. Phew. Thankfully I'll be able to start straight back with the brisk walking on an incline, because I'll only need 2-3 litres for that. Bring on tomorrow I say!
The escape itself was less than smooth, if all's taken in to account... I was told in the morning by my consultant that as long as I had had the steroid injection done by that evening, I could go. That was already somewhat vague as Dad needed to know whether to come from work that evening to pick me up or not! So I asked someone to make sure that pharmacy had the drug in (they don't normally stock it as it's not normally used for treating chest conditions) and got on with packing!
Pharmacy man came early afternoon to check what meds I needed and that seemed fine. Then 5pm came and since pharmacy would have been closing soon and I was expecting Dad at 6pm, I started getting worried that I hadn't had this fricking jab yet, so there's me, going round and asking them for a bum injection like a nutter!! The nurse is like "Good job you asked again now because 10 minutes later and I wouldn't have been able to get it from pharmacy!!" So I would have had to stay another night just for that. Then I realise that the meds I've been given for home have no metronidazole (new antibiotic)!! Which is bad news as I'd only started it 2 days ago... so basically the registrar has to come and ask why I'm on it, why it was stopped on my drug chart (No idea) and then get someone to re-prescribe it! I was fuming tbh, that I would have been sent home with the bug and no abs to treat it. I was like "What if I'm back tomorrow with a 40 degree temperature like last time!!" Maddening.
Anyway, move on Michelle... I did eventually get out after much stress, and waved sweet goodbyes. Since being home I've not stopped!! Dentist, GPs to sort out prescription woes, Friends houses for teas, we had a dinner party, family for roast dinner, one to two walks daily, driving lesson booking, ordering a car (!!!), shopping, cooking, going with Mum to her herceptin session, treadmill buying and tomorrow picking up hehehe... endless! And then where has the week gone, I'll be up at LCH for a check up on Friday. Just a check up! It's never as bad when you know you're walking outa there in a couple of hours. I'll just be doing lung functions, weight, quick chat and eye over from Dr, and possibly gas transfer but we'll see. In a way I'm looking forward to it because I think they'll be really pleased with things - you can see how much better I am than 1 month ago and how clear my chest is now. Plus hopefully once that's out of the way they'll only want me up there every couple of months or something.
I'll update you on the treadmill situation tomorrow night when I've had a good old play!! xxx
The last post was written from l'hopital shortly before I accidently reached my maximum dongle-download limit and thus was internetless. At the same time as the tellies in LCH bummed out and so there was nowt to do. Which all seems irrelevant now that I am smugly at home enjoying all the luxury homey goodies that come with.
I escaped on thursday, so it's nearly a week now, and I've felt perfectly well, not even a HINT of the cruddy chest or temperatures! That bronch was thankfully worth it as it grew some other bacteria that wasn't in my sputum samples and was resistant to the IVs I was on, so I went on a different antibiotic (pill) and so far, so good -I've hardly coughed at all, and have been walking about 3-4 miles every day outside (very slowly as no o2). This has been my exercise 'allowance' untill I pick up my treadmill tomorrow, how exciting, and get a 2nd machine delivered allowing me to have the 10lpm of o2 for jogging.
Basically the decision seems to have been made that I won't be having the portable o2 even for a little portion of my exercise, I'm guessing because of the amount I take and the expense of liquid cyclinders. So since I was going to have to get a treadmill for the jogging anyway, I'll be able to use the concentrator I've had since December, which goes up to 5lpm, plus another which will be delivered next week, hooked up to the same driveline. Phew. Thankfully I'll be able to start straight back with the brisk walking on an incline, because I'll only need 2-3 litres for that. Bring on tomorrow I say!
The escape itself was less than smooth, if all's taken in to account... I was told in the morning by my consultant that as long as I had had the steroid injection done by that evening, I could go. That was already somewhat vague as Dad needed to know whether to come from work that evening to pick me up or not! So I asked someone to make sure that pharmacy had the drug in (they don't normally stock it as it's not normally used for treating chest conditions) and got on with packing!
Pharmacy man came early afternoon to check what meds I needed and that seemed fine. Then 5pm came and since pharmacy would have been closing soon and I was expecting Dad at 6pm, I started getting worried that I hadn't had this fricking jab yet, so there's me, going round and asking them for a bum injection like a nutter!! The nurse is like "Good job you asked again now because 10 minutes later and I wouldn't have been able to get it from pharmacy!!" So I would have had to stay another night just for that. Then I realise that the meds I've been given for home have no metronidazole (new antibiotic)!! Which is bad news as I'd only started it 2 days ago... so basically the registrar has to come and ask why I'm on it, why it was stopped on my drug chart (No idea) and then get someone to re-prescribe it! I was fuming tbh, that I would have been sent home with the bug and no abs to treat it. I was like "What if I'm back tomorrow with a 40 degree temperature like last time!!" Maddening.
Anyway, move on Michelle... I did eventually get out after much stress, and waved sweet goodbyes. Since being home I've not stopped!! Dentist, GPs to sort out prescription woes, Friends houses for teas, we had a dinner party, family for roast dinner, one to two walks daily, driving lesson booking, ordering a car (!!!), shopping, cooking, going with Mum to her herceptin session, treadmill buying and tomorrow picking up hehehe... endless! And then where has the week gone, I'll be up at LCH for a check up on Friday. Just a check up! It's never as bad when you know you're walking outa there in a couple of hours. I'll just be doing lung functions, weight, quick chat and eye over from Dr, and possibly gas transfer but we'll see. In a way I'm looking forward to it because I think they'll be really pleased with things - you can see how much better I am than 1 month ago and how clear my chest is now. Plus hopefully once that's out of the way they'll only want me up there every couple of months or something.
I'll update you on the treadmill situation tomorrow night when I've had a good old play!! xxx
Saturday 11 April 2009
On the up (silent mouth so I don't jinx it)
Awite crew,
Apologies for the long moan last time, unfortunately it was indeed quite an upsetting and difficult few days. But it's all history now, I'll draw a big fat line under it I think!
The pain from the biopsy is much better now, and also I've been off paracetamol since yesterday afternoon and my temperatures has stayed very normal! Sooo, the treadmill was calling for me today (as well as the physio basically picking me up and shoving me on it lol) I was slightly apprehensive of getting out of breath since big deep breaths are still somewhat tender, but actually, it turned out to be the best exercise I've done in here since readmission! I covered 2.2km in 24 minutes which isn't amazing compared to what I'd got up to a few weeks back, but I'm feeling more positive about it all now since I did that with relative ease, on just 2l oxygen, and felt pretty springy ect. Yesterday I did no treadmill but did have a good stroll in the park for half an hour or so with Mum and Dad.
It was pretty awesome seeing them again even though it's only been a few days and we talk twice a day (at least lol). They cheered me up no end even though I was once again creamed at scrabble... harrumph. There was also cake involved at our favorite local cafe The wild Cherry. To be honest though, anything to get out of these four walls for a bit is good... I think you can let yourself get down pretty easily if you're alone with your thoughts and stuck in the unit alot.
I'm planning on going to the park for a lap after IVs this afternoon, which will be another 1.5 km roughly, then I also need to go to Tescos (about 15 minutes away) to pick up some foodstuffs (getting so very bored of the meals in here) so all in all it'll be quite a big step up exercise wise.
If I tolerate today well, then I'll aim for two sessions again tomorrow, and try to cover 5km in total. I really want to get my endurance back first and foremost then I'll worry about the speed, and aim to be back to at least 4 minutes jogging intervals by the end of this admission... whenever that is. Hopefully not more than another week I reckon, if all stays well.
Anywhom, that'll be it for the minute, and I'll let you know how the increased walkage went today.
Take it cheesy xxx
Apologies for the long moan last time, unfortunately it was indeed quite an upsetting and difficult few days. But it's all history now, I'll draw a big fat line under it I think!
The pain from the biopsy is much better now, and also I've been off paracetamol since yesterday afternoon and my temperatures has stayed very normal! Sooo, the treadmill was calling for me today (as well as the physio basically picking me up and shoving me on it lol) I was slightly apprehensive of getting out of breath since big deep breaths are still somewhat tender, but actually, it turned out to be the best exercise I've done in here since readmission! I covered 2.2km in 24 minutes which isn't amazing compared to what I'd got up to a few weeks back, but I'm feeling more positive about it all now since I did that with relative ease, on just 2l oxygen, and felt pretty springy ect. Yesterday I did no treadmill but did have a good stroll in the park for half an hour or so with Mum and Dad.
It was pretty awesome seeing them again even though it's only been a few days and we talk twice a day (at least lol). They cheered me up no end even though I was once again creamed at scrabble... harrumph. There was also cake involved at our favorite local cafe The wild Cherry. To be honest though, anything to get out of these four walls for a bit is good... I think you can let yourself get down pretty easily if you're alone with your thoughts and stuck in the unit alot.
I'm planning on going to the park for a lap after IVs this afternoon, which will be another 1.5 km roughly, then I also need to go to Tescos (about 15 minutes away) to pick up some foodstuffs (getting so very bored of the meals in here) so all in all it'll be quite a big step up exercise wise.
If I tolerate today well, then I'll aim for two sessions again tomorrow, and try to cover 5km in total. I really want to get my endurance back first and foremost then I'll worry about the speed, and aim to be back to at least 4 minutes jogging intervals by the end of this admission... whenever that is. Hopefully not more than another week I reckon, if all stays well.
Anywhom, that'll be it for the minute, and I'll let you know how the increased walkage went today.
Take it cheesy xxx
Thursday 9 April 2009
Me sowee for no bloggy. I've been busy wading through treacle.
Heya,
As you might have guessed, my severe lack of postage has been due to parking my butt back in LCH. In a record time of 22 hours after discharge. Lemme fill you in... (room goes hazy)...
So I leave LCH on the Friday at about 8pm, Daddio picked me up and we sped off in to the depths of homeland sussex, relaxing with a cup of tea by 10.30, then bounced upstairs to unpack ALL my things, neb and snuggle in to my lovely big bed. Slept on and off but mostly that was because I was excited to be home and yet also couldn't stop thinking about Louis and his family. I woke up quite abruptly at about 6am and thought "my god I'm warm in here"... thought it was the oxygen concentrator heating up the room/thick duvet ect, but for some reason I decided to check my temperature anyway even though I felt fine.
I was QUITE surprised when it read 39.9, and got mum to check it on herself to make sure it was working! Which it was... so here I am thinking WTF, how do I not feel awful with this fever? I guess the shivery part happened when I was half asleep so I didn't realise the crap feeling and had simply arrived at the burning hot stage without any warning. I took paracetamol to get it down and it went down to the mid 37s a few hours later, but I was still so confused as to why it would shoot up like that when temps hadn't been an issue during the admission when on IVs.
When it started heading back up again despite more paracetamol, and I also felt a teeny bit off, we had to give in and call the ward for advice, to check whether it could be the kenalog (steroid) injection that I had before I left LCH.
Doctor on call phoned back and pretty much had dobbed me in to my consultant, who demanded we go in straight away for blood cultures and an x-ray. I felt well enough to get the train up so we did, and there you have it, by 8pm Saturday night, I was back.
The next four daysish were a blur as I continued to spike 40 degree temps all the time and this time actually did feel awful. My xray on sunday morning confirmed that the pneumonia had sprung back overnight, this time worse in the right lung, and at first it was like no-one had a clue where to go. On sunday morning we stopped ALL my CF drugs in the remote chance that they could have been causing a reaction. And by late sunday we restarted IVs as they realised it was probably infection. Tazocin and Tobramycin again, and thankfully a long line was put in and lasted till today.
Due to the Tazocin being stopped for 48 hours then restarted, I developed a rash all over and now am allergic to it, so it's been switched to aztreonam, with the tobra.
The temperatures have reduced a bit but still spike up to 39 at times and as this was happening after a week of IVs, and my x-ray hadn't improved, they decided that I'd have a bronchoscopy with a biopsy today. It's the third one I've had and unfortunately despite sedation I had remembered everything and felt everything so knew what was coming. They promised that this time I'd have more sedation so I'd not remember/be aware of much at all, but for some reason I was given the highest standard dose, and was wide awake for it. It's effing horrible and I hope I never have one again. They had three snips at a biopsy and I was in so much pain I cried the whole time (I NEVER cry with pain) and then continued to sob all afternoon like an idiot. I couldn't help it to be honest, I felt so... let down by it all. No-ones fault but just.. not nice.
Even though apparently I'm a hardened benzodiazapene user and it did NOTHING for me during the procedure, it did help me to feel like a drunk all afternoon so basically if I wasn't sleeping I was crying in pain and vica versa. Eventually I was given something for the pain although I never got my 2pm IVs, and due to my beloved long line being raped by the midazolam, not flushed afterwards, and then not being clamped and filling up with blood, it's now irreversably blocked and when I asked why I'd not had my IVs at about 7pm, and they came round to give them (!), unusable. And so here we are, nearly 9pm, me waiting for doctor to come and put a venflon in... so familiar, and I've missed a dose of antibiotics. Retards.
Well, I didn't say it was gonna be pretty, and it wasn't. That's roughly everything that's gone on bar a few things, so I'll update tomorrow. No exercise today for obvious reasons.... xxx
As you might have guessed, my severe lack of postage has been due to parking my butt back in LCH. In a record time of 22 hours after discharge. Lemme fill you in... (room goes hazy)...
So I leave LCH on the Friday at about 8pm, Daddio picked me up and we sped off in to the depths of homeland sussex, relaxing with a cup of tea by 10.30, then bounced upstairs to unpack ALL my things, neb and snuggle in to my lovely big bed. Slept on and off but mostly that was because I was excited to be home and yet also couldn't stop thinking about Louis and his family. I woke up quite abruptly at about 6am and thought "my god I'm warm in here"... thought it was the oxygen concentrator heating up the room/thick duvet ect, but for some reason I decided to check my temperature anyway even though I felt fine.
I was QUITE surprised when it read 39.9, and got mum to check it on herself to make sure it was working! Which it was... so here I am thinking WTF, how do I not feel awful with this fever? I guess the shivery part happened when I was half asleep so I didn't realise the crap feeling and had simply arrived at the burning hot stage without any warning. I took paracetamol to get it down and it went down to the mid 37s a few hours later, but I was still so confused as to why it would shoot up like that when temps hadn't been an issue during the admission when on IVs.
When it started heading back up again despite more paracetamol, and I also felt a teeny bit off, we had to give in and call the ward for advice, to check whether it could be the kenalog (steroid) injection that I had before I left LCH.
Doctor on call phoned back and pretty much had dobbed me in to my consultant, who demanded we go in straight away for blood cultures and an x-ray. I felt well enough to get the train up so we did, and there you have it, by 8pm Saturday night, I was back.
The next four daysish were a blur as I continued to spike 40 degree temps all the time and this time actually did feel awful. My xray on sunday morning confirmed that the pneumonia had sprung back overnight, this time worse in the right lung, and at first it was like no-one had a clue where to go. On sunday morning we stopped ALL my CF drugs in the remote chance that they could have been causing a reaction. And by late sunday we restarted IVs as they realised it was probably infection. Tazocin and Tobramycin again, and thankfully a long line was put in and lasted till today.
Due to the Tazocin being stopped for 48 hours then restarted, I developed a rash all over and now am allergic to it, so it's been switched to aztreonam, with the tobra.
The temperatures have reduced a bit but still spike up to 39 at times and as this was happening after a week of IVs, and my x-ray hadn't improved, they decided that I'd have a bronchoscopy with a biopsy today. It's the third one I've had and unfortunately despite sedation I had remembered everything and felt everything so knew what was coming. They promised that this time I'd have more sedation so I'd not remember/be aware of much at all, but for some reason I was given the highest standard dose, and was wide awake for it. It's effing horrible and I hope I never have one again. They had three snips at a biopsy and I was in so much pain I cried the whole time (I NEVER cry with pain) and then continued to sob all afternoon like an idiot. I couldn't help it to be honest, I felt so... let down by it all. No-ones fault but just.. not nice.
Even though apparently I'm a hardened benzodiazapene user and it did NOTHING for me during the procedure, it did help me to feel like a drunk all afternoon so basically if I wasn't sleeping I was crying in pain and vica versa. Eventually I was given something for the pain although I never got my 2pm IVs, and due to my beloved long line being raped by the midazolam, not flushed afterwards, and then not being clamped and filling up with blood, it's now irreversably blocked and when I asked why I'd not had my IVs at about 7pm, and they came round to give them (!), unusable. And so here we are, nearly 9pm, me waiting for doctor to come and put a venflon in... so familiar, and I've missed a dose of antibiotics. Retards.
Well, I didn't say it was gonna be pretty, and it wasn't. That's roughly everything that's gone on bar a few things, so I'll update tomorrow. No exercise today for obvious reasons.... xxx
Friday 27 March 2009
A new, very shiny star in the sky tonight.
Hey you,
Tonight I won't do my blog as such, I'll update tomorrow. Tonight I just want to wish Louis farewell after his long and brave fight with CF. A total ledge and trooper who I didn't know for very long, but who I am so grateful to have done. He passed away peacefully this morning at the hospital and will be greatly missed.
Breathe easy and enjoy your ninja batman wings Mr! xxx
Tonight I won't do my blog as such, I'll update tomorrow. Tonight I just want to wish Louis farewell after his long and brave fight with CF. A total ledge and trooper who I didn't know for very long, but who I am so grateful to have done. He passed away peacefully this morning at the hospital and will be greatly missed.
Breathe easy and enjoy your ninja batman wings Mr! xxx
Thursday 26 March 2009
I'll pretend like I'm training at altitude...
Glad tonights the last night in because I'm officially knackered in here! Today we managed to get my earlobe blood gases after a running interval and workout on 10litres o2, and also monitored my sats nearly every minute throughout the half hour sesh to get a final profile of what's happening with my hypoxia ect with exertion.
Basically, we got a blood gas taken one or two minutes after I stopped a running interval and was just standing there breathing the 10 litres o2, and my sats had gone up from 81 in the final minute of the 4 minute interval, to 92, CO2 levels and O2 levels more or less fine, and PH quite low, presumeably from residual lactic acid during the hyposix state.
I also went and had a baseline, resting ear lobe gas (my poor ear!) done on room air which, as expected, was all tickedy.
I'm sort of dissapointed that this level of o2 is what I have to stay at for now and I'm still very hypoxic by the end of an interval, but I'm not particulary surprised either as it's just another day. The fact that I'm going home doesn't, unfortunately mean that my lungs have started doing their job properly... SO, 10 litres for running and 4 litres for walking it is.
The good news is though, that although I've already commited myself to the fast I'll need to do the treadmill indoors for the forseeable future, I will now be getting portable O2 cyclinders so that I can do a fair portion of my brisk walking outdoors, using the 4 litres via conserver. So I will be getting out in the fresh air for some of my exercise after all!
Today was my last day of hydrocortisone, and tomorrow I'll have my first tricinolone injection which lasts one month. Brilliant - no pred tablets to take. That's 6 less pills a day lol...
So my workouts today have been the morning 22 minutes covering 2.2km, 10 minutes at incline of 4%, then at 2pm my 3.6km session including a total of 10 minutes jogging. And the rest walked at 6 or a bit higher. So that lot took me 31 minutes. Not bad at all, a pb by the day... shame I'm not getting oxygen saturation PBs also!!
I'll also be waving goodbye to mr venflonny, IV tazocin and IV tobramycin, after 2 weeks five days. Ahhhhh... the blissful return of non-stinging veins and a nice hot bath when I get home.
I'm going to sort out some driving lessons for next week, a mobility car, and also that treadmill. I can't wait to be one of the smart office types who owns a treadmill. How important and time saving of me.
Next time I update I'll not be doing it from hotel chest... I'll be HOME in my nice big bed, with no one walking in and out every five minutes, no IVs, no menus to fill out, no rustly drug stash next to my room all night, no cleaners emptying the bins four times a day, no constant questions of have I taken this med or that neb, no 4 times a day blood pressure, sats, temperature readings, blood sugars, no three weekly weigh ins, and NO BLOOD TESTS. Oh gawsh I'll miss it ;-)
I'll be here all day tomorrow, so I'll get the same workouts in before I go, and then as for when I'll next be able to do a running sesh, it depends when I can get to the gym. Hopefully, Dad will play squash on saturday so I can tag along then with the tank. And then double hopefully, we'll get treadmill sorted within the week.
Byeeeeeee xxx
Basically, we got a blood gas taken one or two minutes after I stopped a running interval and was just standing there breathing the 10 litres o2, and my sats had gone up from 81 in the final minute of the 4 minute interval, to 92, CO2 levels and O2 levels more or less fine, and PH quite low, presumeably from residual lactic acid during the hyposix state.
I also went and had a baseline, resting ear lobe gas (my poor ear!) done on room air which, as expected, was all tickedy.
I'm sort of dissapointed that this level of o2 is what I have to stay at for now and I'm still very hypoxic by the end of an interval, but I'm not particulary surprised either as it's just another day. The fact that I'm going home doesn't, unfortunately mean that my lungs have started doing their job properly... SO, 10 litres for running and 4 litres for walking it is.
The good news is though, that although I've already commited myself to the fast I'll need to do the treadmill indoors for the forseeable future, I will now be getting portable O2 cyclinders so that I can do a fair portion of my brisk walking outdoors, using the 4 litres via conserver. So I will be getting out in the fresh air for some of my exercise after all!
Today was my last day of hydrocortisone, and tomorrow I'll have my first tricinolone injection which lasts one month. Brilliant - no pred tablets to take. That's 6 less pills a day lol...
So my workouts today have been the morning 22 minutes covering 2.2km, 10 minutes at incline of 4%, then at 2pm my 3.6km session including a total of 10 minutes jogging. And the rest walked at 6 or a bit higher. So that lot took me 31 minutes. Not bad at all, a pb by the day... shame I'm not getting oxygen saturation PBs also!!
I'll also be waving goodbye to mr venflonny, IV tazocin and IV tobramycin, after 2 weeks five days. Ahhhhh... the blissful return of non-stinging veins and a nice hot bath when I get home.
I'm going to sort out some driving lessons for next week, a mobility car, and also that treadmill. I can't wait to be one of the smart office types who owns a treadmill. How important and time saving of me.
Next time I update I'll not be doing it from hotel chest... I'll be HOME in my nice big bed, with no one walking in and out every five minutes, no IVs, no menus to fill out, no rustly drug stash next to my room all night, no cleaners emptying the bins four times a day, no constant questions of have I taken this med or that neb, no 4 times a day blood pressure, sats, temperature readings, blood sugars, no three weekly weigh ins, and NO BLOOD TESTS. Oh gawsh I'll miss it ;-)
I'll be here all day tomorrow, so I'll get the same workouts in before I go, and then as for when I'll next be able to do a running sesh, it depends when I can get to the gym. Hopefully, Dad will play squash on saturday so I can tag along then with the tank. And then double hopefully, we'll get treadmill sorted within the week.
Byeeeeeee xxx
Wednesday 25 March 2009
A plan!! Friday's the day peeps ;-)
Another tres bon jour a la office - we now officially know what to do with me and my body! First and foremost, I will get to go home on Friday. So not too long now at all. And the steroid issue will be managed by me having fortnightly then monthly injections of a steroid that kind of releases slowly so it lasts till your next dose a few weeks later. Or something... I'm not sure exactly what it is but I start it tomorrow or friday so after tomorrow, NO MORE HYDROCORTISONE!!
You should have seen the grin spreading on my face... one happy customer. My Drs are Ledge -ends.
Tbh though, just in time for me to stop it, the IV HC side effects have worn off now - I'm back to what I weighed when I was admitted (kind of skinny but at least I'm not bloated lol) so the fluid retention must have gone, and I don't feel too steroidy really, I don't think I can blame my mood swings on them anymore coz I am naturally quite grumpy lol.
With the whole oxygen issue, basically tomorrow I'm going to redo my sats for a running sesh and see if I'm needing less than 10l now to maintain sats over 90. Which could well be possible as I've been way less lactic-acidy today then I was before...
So we'll reassess just what o2 I need to do my proper workouts, to know where we're at, but whatever it is, it doesn't change whether I get out friday, because Dr doesn't want me to have the portably cyclinders as they're heavy and would kind of make me more worn out if I had to backpack them whilst running outside.
Soooo... the only real way I can get around this is to get a treadmill at home. So I can do my runs whilst using the oxygen concentrator that I've had at home since December.
It's not ideal as I would love to be able to get outside for the runs, and not have any break between getting home and carrying on, but I guess it would be a mare carrying the cyclinders due to the amount I need to get through one 30 minute session.
And we have a large tank that we can take over to the gym, so I guess I'll have to grin and bear it till I sort out a treadmill.
I may also have to get a few of those funky exercise DVDs to do in the living room using the o2 till then, coz that's kind of vigorous if you do it properly... lol bums and tums here I comes.
The exercise went pretty well again today - I did my first session exactly the same as yesterday, and it actually felt easier already! So 2.2 km down by 8.30am, then a little walk to the cafe and back when Mom was here, then later on I did 3.4 km in about 31 minutes!
I did 8 minutes running in total, in one lot of 4 minutes and 2 lots of 2. I got a slight stitch probably from the tea I'd been drinking earlier so it wasn't totally comfortable, but it would have been fine otherwise. And I was cautious of overdoing it and going for loads again when I know my legs get very achey and tired if I overdo it. But it was good coz I upped the incline and pace of the walk during the walking part, to increase the workout without completely overdoing it.
For the first time, I actually recovered really well after the session - I didn't feel heavy headed and sleepy and just stayed on 3 litres o2 for my stretches then came right off, and the legs haven't been at all achey!
Flipping gooood really. Nervous about how long I'll have to wait before being able to do it as well as I have been here, when I get home, but it will get sorted!
I'm really hoping that I can maintain sats of 91-92ish on 6-8 litres tomorrow, but we'll see and I'll not let myself get too worried if I still have to have 10 for now because at least that amount actually allows me to do loads more now. I got the physio to check what my sats were doing when I go up the stairs (big evil three flights stupidly in a specialist chest hospital making us all feel unfit grrrr) and they went to 82, so not great, however... they would have been in the 60s a few months ago and I also walked up them kind of slowly but without stopping at all. And they went back up to 93 within about 2 minutes of stopping at the top and doing some serious breathing! Lol. At least I don't have 3 flights to go up at home...
xxx
You should have seen the grin spreading on my face... one happy customer. My Drs are Ledge -ends.
Tbh though, just in time for me to stop it, the IV HC side effects have worn off now - I'm back to what I weighed when I was admitted (kind of skinny but at least I'm not bloated lol) so the fluid retention must have gone, and I don't feel too steroidy really, I don't think I can blame my mood swings on them anymore coz I am naturally quite grumpy lol.
With the whole oxygen issue, basically tomorrow I'm going to redo my sats for a running sesh and see if I'm needing less than 10l now to maintain sats over 90. Which could well be possible as I've been way less lactic-acidy today then I was before...
So we'll reassess just what o2 I need to do my proper workouts, to know where we're at, but whatever it is, it doesn't change whether I get out friday, because Dr doesn't want me to have the portably cyclinders as they're heavy and would kind of make me more worn out if I had to backpack them whilst running outside.
Soooo... the only real way I can get around this is to get a treadmill at home. So I can do my runs whilst using the oxygen concentrator that I've had at home since December.
It's not ideal as I would love to be able to get outside for the runs, and not have any break between getting home and carrying on, but I guess it would be a mare carrying the cyclinders due to the amount I need to get through one 30 minute session.
And we have a large tank that we can take over to the gym, so I guess I'll have to grin and bear it till I sort out a treadmill.
I may also have to get a few of those funky exercise DVDs to do in the living room using the o2 till then, coz that's kind of vigorous if you do it properly... lol bums and tums here I comes.
The exercise went pretty well again today - I did my first session exactly the same as yesterday, and it actually felt easier already! So 2.2 km down by 8.30am, then a little walk to the cafe and back when Mom was here, then later on I did 3.4 km in about 31 minutes!
I did 8 minutes running in total, in one lot of 4 minutes and 2 lots of 2. I got a slight stitch probably from the tea I'd been drinking earlier so it wasn't totally comfortable, but it would have been fine otherwise. And I was cautious of overdoing it and going for loads again when I know my legs get very achey and tired if I overdo it. But it was good coz I upped the incline and pace of the walk during the walking part, to increase the workout without completely overdoing it.
For the first time, I actually recovered really well after the session - I didn't feel heavy headed and sleepy and just stayed on 3 litres o2 for my stretches then came right off, and the legs haven't been at all achey!
Flipping gooood really. Nervous about how long I'll have to wait before being able to do it as well as I have been here, when I get home, but it will get sorted!
I'm really hoping that I can maintain sats of 91-92ish on 6-8 litres tomorrow, but we'll see and I'll not let myself get too worried if I still have to have 10 for now because at least that amount actually allows me to do loads more now. I got the physio to check what my sats were doing when I go up the stairs (big evil three flights stupidly in a specialist chest hospital making us all feel unfit grrrr) and they went to 82, so not great, however... they would have been in the 60s a few months ago and I also walked up them kind of slowly but without stopping at all. And they went back up to 93 within about 2 minutes of stopping at the top and doing some serious breathing! Lol. At least I don't have 3 flights to go up at home...
xxx
Tuesday 24 March 2009
12 Minutes! Where did that one come from? >Grin<
Today was so much better. I woke up at 7.30 a little while after IVs, did nebs and then got myself on the treadmill sharpish. And it was a really good old walk too, I did just over 2km in 20 minutes, half of it at 4% incline too! So I was chuffed with that, and knew it was going to be a better day today.
I had a sunny walk in the park after lunch, so that was another (very easy) 20 minutes, then just before dinner, I thought I'd better get on and do my hard sesh rather than have to wait hours after eating. I started off with 4 minutes at 6kph, then turned up the o2 to 10l and went on to do EIGHT, yes 8 (!) minutes at 8.2kph without stopping. I had no idea I was going to do that, as I set out to do 10 minutes total, broken in to maybe 2 fours and a final 2. But nope, I just seemed much more comfortable whilst doing it than last time and it would have felt such a shame to break it up when I felt I could do loads more. I was quite amazed after 6 minutes that I felt still relatively comfortable so I thought maybe I'd last another minute... then by focusing on maintaining my form and not hunching or leaning too much, and taking huge deep breaths in relaly sucking up the oxygen, I managed to go on till 8 minutes.
At that point I was very tired but I got my breath back quite fast just walking at 6, and after a four minute recovery, went for my next 2 minutes. It felt quite short compared, so I just had 2 minutes recovery walking, then thought why not just try for another 2 minutes? So I did!
Bloody brilliant... I can't even begin to describe how much my legs ached after but it was totally worth it! And the coughing only got to be alot right at the end whilst I did my recovery walk.
Covered just over 3km in 26 minutes, which is loads loads more than last week and I wouldn't have thought I could manage it then, especially since I'd already done a fair amount in the day.
Needless to say, totally knackered and after dinner I had the old tempy spikey come back, which meant I dozed off in bed untill about 8pm. Woops. It's come down by itself though, so I'm not entirely sure why I keep getting the little temperatures and chills in the early mornings and evenings. It's odd but I'm trying to not worry tooo much since I haven't had an actual fever and it does always go back to normal after a few hours.
Currently I'm waiting for yet another new venflon for my nighttime IVs, since this one has gone very painful and stiff. After less than two days. I'm getting so annoyed about this now. We had three attempts at a long line yesterday, no-one tried today, and here I am still running out of veins and having 4 stingy lots of medication a day through stupid little pieces of plastic that pack up and leave rock hard stringy veins in their wake. Can't wait till I get out and I can't deny that this is one of the main reasons why!
Still, it's not hindering my little joggettes so there is at least some balance between le bad and le bon.
Mummy bear is also venturing up tomorrow for much scrabble, yummy lunch and cuddles. Which will be loverry and very needed.
Well, less whinging today and hopefully even less tomorrow.
I want to do the same morning workout, then a little walk with Mum, then probably aim to do another jog session late afternoon. And then collapse, probably!
Laters xxx
I had a sunny walk in the park after lunch, so that was another (very easy) 20 minutes, then just before dinner, I thought I'd better get on and do my hard sesh rather than have to wait hours after eating. I started off with 4 minutes at 6kph, then turned up the o2 to 10l and went on to do EIGHT, yes 8 (!) minutes at 8.2kph without stopping. I had no idea I was going to do that, as I set out to do 10 minutes total, broken in to maybe 2 fours and a final 2. But nope, I just seemed much more comfortable whilst doing it than last time and it would have felt such a shame to break it up when I felt I could do loads more. I was quite amazed after 6 minutes that I felt still relatively comfortable so I thought maybe I'd last another minute... then by focusing on maintaining my form and not hunching or leaning too much, and taking huge deep breaths in relaly sucking up the oxygen, I managed to go on till 8 minutes.
At that point I was very tired but I got my breath back quite fast just walking at 6, and after a four minute recovery, went for my next 2 minutes. It felt quite short compared, so I just had 2 minutes recovery walking, then thought why not just try for another 2 minutes? So I did!
Bloody brilliant... I can't even begin to describe how much my legs ached after but it was totally worth it! And the coughing only got to be alot right at the end whilst I did my recovery walk.
Covered just over 3km in 26 minutes, which is loads loads more than last week and I wouldn't have thought I could manage it then, especially since I'd already done a fair amount in the day.
Needless to say, totally knackered and after dinner I had the old tempy spikey come back, which meant I dozed off in bed untill about 8pm. Woops. It's come down by itself though, so I'm not entirely sure why I keep getting the little temperatures and chills in the early mornings and evenings. It's odd but I'm trying to not worry tooo much since I haven't had an actual fever and it does always go back to normal after a few hours.
Currently I'm waiting for yet another new venflon for my nighttime IVs, since this one has gone very painful and stiff. After less than two days. I'm getting so annoyed about this now. We had three attempts at a long line yesterday, no-one tried today, and here I am still running out of veins and having 4 stingy lots of medication a day through stupid little pieces of plastic that pack up and leave rock hard stringy veins in their wake. Can't wait till I get out and I can't deny that this is one of the main reasons why!
Still, it's not hindering my little joggettes so there is at least some balance between le bad and le bon.
Mummy bear is also venturing up tomorrow for much scrabble, yummy lunch and cuddles. Which will be loverry and very needed.
Well, less whinging today and hopefully even less tomorrow.
I want to do the same morning workout, then a little walk with Mum, then probably aim to do another jog session late afternoon. And then collapse, probably!
Laters xxx
Monday 23 March 2009
Once spicy meatball of a bad day. Rolllll on tomorrow!
You know those days where you wake up and you know it just not gonna be a good one? Yep, today was definately one of those.
6am IVs... my venflon had completely tissued overnight and absolutely not one drop of saline would go through, so out it came.
Pissy foreign Dr comes in at 7am to put a new one in (ahahaha her again, bet she regrets last week) but not before going: "What has happened to the other one?" as if I'd DONE something to it because I'm so in love with having my veins stabbed at in the early hours. I just gave her 'the look' and went " It tissued, nothing would go through".
Stabby stabby, new venflonny number seveny... and since I've started doing my own IVs quite alot in here the nurse just handed them over and left me to it. Something was distinctly amiss though.. I felt that familiar shivery, washed out, wobbly feeling and my temp was just slightly up. So I didn't get up and do anything at all till 9am. And then didn't feel like even a walk so just washed my hair and attempted to eat something. Bleh. Lung functions were still brilliant, although that's pretty much a reassurance that my fitness is on the up and that my inflammation in the airways is normal. It doesn't really make me jump for joy anymore (ungrateful as that sounds) because I knw what's going on in my airspaces and that my gas transfer is rubbish... still, at least one thing goes my way now!
Ward round was okay since I knew they weren't going to be letting me out today. So far they aren't entirely sure what to do with me except carry on with IVs for a few more days, and see where that gets my gas transfer and see if my oxygen requirements start going down a bit. My consultant said she hoped to get me out of here by the end of the week but since they don't think I'm absorbing oral steroids and I'm apparently loads better on IV, we're a bit stuck. It seems to depend on whether my gas transfer improves at all this week, whether they can figure out a way to get me continuing to improve OFF iv steroids, and how much longer I'm going to need steroids for.
Oh the ISSUES!! She also keeps trying to gently give me a bit of a reality check over how my lungs will be in the future. Scarring issues ect ect. Like, she isn't sure my gas transfer will ever be normal, even though it'll get much better. So I'll always be more out of breath when I run ect. But that's something I'd kind of figured out anyway really.
Even so, I burst in to tears when she was saying it all because just none of it was what I want to hear. Why can't I get better off oral streroids alone?!! Why have my alveoli thickened up so much that now they'll always be less efficient?! And from that point onwards, I've officially cried on and off all day. All effing day. I hate it when you're like that... and I don't get it often.
But I just felt that way where you just can't hold it back anymore because of being so frustrated and dissapointed at it all. So I've mostly stayed in my room sulking, lol. Safer that way coz I don't want to be walking down the ward and suddenly start bubbling away!
I basically did a load of knitting, to stay relaxed and pass the time. And physio came round and was NOT going to leave without getting me on the treadmill. I explained I was feeling a bit off today and that I was just going to do a decent paced walk. So I had 20 very uneventful minutes walking, but did feel somewhat better having done it so at least I felt I'd done something constructive! 4 litres o2 to maintain sats at 91, at 6kmph, so all stable there.
I felt al chilly and weird again later so had a sleep and then a very easy 10 minutes on the treadmill, so at least I've done 30 minutes walking today. And my legs will probably feel nice and fresh tomorrow so I think I'll just write today off as one of those days, and get myself together!
Just gonna have to stick out this bit now till they figure out what to do with me lol.
Big glassy eyed apologies for the self indulgent drivle that has been todays post. Lets turn over a new leaf tomorrow I think!
Take care cheesies xxx
6am IVs... my venflon had completely tissued overnight and absolutely not one drop of saline would go through, so out it came.
Pissy foreign Dr comes in at 7am to put a new one in (ahahaha her again, bet she regrets last week) but not before going: "What has happened to the other one?" as if I'd DONE something to it because I'm so in love with having my veins stabbed at in the early hours. I just gave her 'the look' and went " It tissued, nothing would go through".
Stabby stabby, new venflonny number seveny... and since I've started doing my own IVs quite alot in here the nurse just handed them over and left me to it. Something was distinctly amiss though.. I felt that familiar shivery, washed out, wobbly feeling and my temp was just slightly up. So I didn't get up and do anything at all till 9am. And then didn't feel like even a walk so just washed my hair and attempted to eat something. Bleh. Lung functions were still brilliant, although that's pretty much a reassurance that my fitness is on the up and that my inflammation in the airways is normal. It doesn't really make me jump for joy anymore (ungrateful as that sounds) because I knw what's going on in my airspaces and that my gas transfer is rubbish... still, at least one thing goes my way now!
Ward round was okay since I knew they weren't going to be letting me out today. So far they aren't entirely sure what to do with me except carry on with IVs for a few more days, and see where that gets my gas transfer and see if my oxygen requirements start going down a bit. My consultant said she hoped to get me out of here by the end of the week but since they don't think I'm absorbing oral steroids and I'm apparently loads better on IV, we're a bit stuck. It seems to depend on whether my gas transfer improves at all this week, whether they can figure out a way to get me continuing to improve OFF iv steroids, and how much longer I'm going to need steroids for.
Oh the ISSUES!! She also keeps trying to gently give me a bit of a reality check over how my lungs will be in the future. Scarring issues ect ect. Like, she isn't sure my gas transfer will ever be normal, even though it'll get much better. So I'll always be more out of breath when I run ect. But that's something I'd kind of figured out anyway really.
Even so, I burst in to tears when she was saying it all because just none of it was what I want to hear. Why can't I get better off oral streroids alone?!! Why have my alveoli thickened up so much that now they'll always be less efficient?! And from that point onwards, I've officially cried on and off all day. All effing day. I hate it when you're like that... and I don't get it often.
But I just felt that way where you just can't hold it back anymore because of being so frustrated and dissapointed at it all. So I've mostly stayed in my room sulking, lol. Safer that way coz I don't want to be walking down the ward and suddenly start bubbling away!
I basically did a load of knitting, to stay relaxed and pass the time. And physio came round and was NOT going to leave without getting me on the treadmill. I explained I was feeling a bit off today and that I was just going to do a decent paced walk. So I had 20 very uneventful minutes walking, but did feel somewhat better having done it so at least I felt I'd done something constructive! 4 litres o2 to maintain sats at 91, at 6kmph, so all stable there.
I felt al chilly and weird again later so had a sleep and then a very easy 10 minutes on the treadmill, so at least I've done 30 minutes walking today. And my legs will probably feel nice and fresh tomorrow so I think I'll just write today off as one of those days, and get myself together!
Just gonna have to stick out this bit now till they figure out what to do with me lol.
Big glassy eyed apologies for the self indulgent drivle that has been todays post. Lets turn over a new leaf tomorrow I think!
Take care cheesies xxx
Sunday 22 March 2009
'appy marthers day, a good one in spite of... well, myself.
Hey,
The first thing I thought about this morning when I woke up was "I hope they deliver those flowers okay and quite early" I got a call around 10.30 from the delivery man asking for directions, and they were with Mommy soon after. Phew! And it's a freaking good job they were delivered quite early because apparently the mothers day traffic was a total nightmare. 50 miles as the crow flies form our house to hospy, and it took the rents 3 hours to get here! So understandably they were frazzled when they arrived, and our lunchen in the parken was not to be untill 3pm! Lol, at least we were all ready for it!
I had my 'early' session at about 9am, and OMG did I feel the running from last night in my legs. So. much. pain. And chesty poos was pluggy and horrible for some reason. Still, I decided that since I would not be able to run on them in this way, I'd go for a walky PB instead! Covered my 2km in 20 minutes! At incline of 3-4% as well, so really not a bad little workout after all. I pretty much just whiled away the rest of the morning and chilled till Ma and Pa arrived, couldn't muster the strength to do much else really! And since it was not that warm and we were so hungry when we got to the park, we only walked for about 10 minutes in total. So at least this gave my legs a good chance at recovery before attempting to run again this evening.
7.30pm and off I toddle in to the day room, thinking of roughly 10 minutes jogging within a 30 min workout. And I managed 8 in total. Not overly rubbish but not as good as I'd hoped. My legs were just so painful and I was coughing sooo much all evening that I ended up with stomach cramps and stitch in every single interval I did. Plus the coughing was affecting my breathing rhythm which is never good.
I did manage to cover 3.4km in about 30 minutes though, all on 2-3% incline. Which isn't bad going in context, it's just frustrating when you're as impatient as moi, and you want to make more progress with every work out.
I guess I need to reassure myself that things get easier bit by bit, and THEN you increase the time/intensity. And it won't happen with every single workout either. It wouldn't when I was fast, and it won't now.
I think maybe before I keep getting ahead of myself and expecting my lungs/legs to be able to cope with longer and faster intervals all the time, I should just be positive that the intervals I have been doing are feeling that bit easier, and that running for 8 minutes a day would never have happened a month ago. It's really not that long since I could barely even have a 5 minutes shower without crashing out on my bed for half an hour afterwards.
Maybe the reason I've been getting dissapointed with it so easily is just because with the amount of 02 I'm having to do it, I expect my body to work normally with it... whereas it's just a bit more complicated than that! Just gonna be baby steps... but they're forward steps.
So in light of appreciating the fitness I HAVE got, I think I'll be fairly conservative for now, and aim for not more than 8-10 minutes of jogging everyday. Then hopefully in a week or two, this will feel much easier and I'll be comfortable to up it by another couple of minutes.
Added to this is the confusion about when I'll go home! They just don't let on much. In my mind, I'm good to go but I need the portable oxygen sorting if I'm going to be able to carry on exercising effectively. I don't want to hang around here for much longer just for the simple fact that I'm hypoxic on walking. They've said themselves it's not going to get better overnight, yet they seem to want to keep me here to see how much better things can get through having IV steroids.
I'm so annoyed that they don't see it my way! They said the x-ray had improved when I was admitted, so obviously the oral prednisolone was (if very slowly) doing it's job... and yet they're apparently so impressed with the hydrocortisone that I'm carrying on with it. But they've not said how long for, why and what they're actually wanting to see with me before they'll consider me ready to get home. I need to know what I'm aiming for otherwise how can I possibly plan ahead and plan for fitness type things when I'm out?! Hopefully they'll shed more light on it when I ask tomorrow. See what lung functions ect do... blah, blah, blah.
I'll let yas know! Take it easy guys xxx
The first thing I thought about this morning when I woke up was "I hope they deliver those flowers okay and quite early" I got a call around 10.30 from the delivery man asking for directions, and they were with Mommy soon after. Phew! And it's a freaking good job they were delivered quite early because apparently the mothers day traffic was a total nightmare. 50 miles as the crow flies form our house to hospy, and it took the rents 3 hours to get here! So understandably they were frazzled when they arrived, and our lunchen in the parken was not to be untill 3pm! Lol, at least we were all ready for it!
I had my 'early' session at about 9am, and OMG did I feel the running from last night in my legs. So. much. pain. And chesty poos was pluggy and horrible for some reason. Still, I decided that since I would not be able to run on them in this way, I'd go for a walky PB instead! Covered my 2km in 20 minutes! At incline of 3-4% as well, so really not a bad little workout after all. I pretty much just whiled away the rest of the morning and chilled till Ma and Pa arrived, couldn't muster the strength to do much else really! And since it was not that warm and we were so hungry when we got to the park, we only walked for about 10 minutes in total. So at least this gave my legs a good chance at recovery before attempting to run again this evening.
7.30pm and off I toddle in to the day room, thinking of roughly 10 minutes jogging within a 30 min workout. And I managed 8 in total. Not overly rubbish but not as good as I'd hoped. My legs were just so painful and I was coughing sooo much all evening that I ended up with stomach cramps and stitch in every single interval I did. Plus the coughing was affecting my breathing rhythm which is never good.
I did manage to cover 3.4km in about 30 minutes though, all on 2-3% incline. Which isn't bad going in context, it's just frustrating when you're as impatient as moi, and you want to make more progress with every work out.
I guess I need to reassure myself that things get easier bit by bit, and THEN you increase the time/intensity. And it won't happen with every single workout either. It wouldn't when I was fast, and it won't now.
I think maybe before I keep getting ahead of myself and expecting my lungs/legs to be able to cope with longer and faster intervals all the time, I should just be positive that the intervals I have been doing are feeling that bit easier, and that running for 8 minutes a day would never have happened a month ago. It's really not that long since I could barely even have a 5 minutes shower without crashing out on my bed for half an hour afterwards.
Maybe the reason I've been getting dissapointed with it so easily is just because with the amount of 02 I'm having to do it, I expect my body to work normally with it... whereas it's just a bit more complicated than that! Just gonna be baby steps... but they're forward steps.
So in light of appreciating the fitness I HAVE got, I think I'll be fairly conservative for now, and aim for not more than 8-10 minutes of jogging everyday. Then hopefully in a week or two, this will feel much easier and I'll be comfortable to up it by another couple of minutes.
Added to this is the confusion about when I'll go home! They just don't let on much. In my mind, I'm good to go but I need the portable oxygen sorting if I'm going to be able to carry on exercising effectively. I don't want to hang around here for much longer just for the simple fact that I'm hypoxic on walking. They've said themselves it's not going to get better overnight, yet they seem to want to keep me here to see how much better things can get through having IV steroids.
I'm so annoyed that they don't see it my way! They said the x-ray had improved when I was admitted, so obviously the oral prednisolone was (if very slowly) doing it's job... and yet they're apparently so impressed with the hydrocortisone that I'm carrying on with it. But they've not said how long for, why and what they're actually wanting to see with me before they'll consider me ready to get home. I need to know what I'm aiming for otherwise how can I possibly plan ahead and plan for fitness type things when I'm out?! Hopefully they'll shed more light on it when I ask tomorrow. See what lung functions ect do... blah, blah, blah.
I'll let yas know! Take it easy guys xxx
Saturday 21 March 2009
Flat as a pancake... but a fluffy american one, not a crepe.
Ahem. I'm just gonna get this out in the open now... I slept in till 9.30 when I was practically shoved out of bed by the day nurses wanting to change the sheets. And it certainly didn't go unnoticed - "You're sleeping late. You're normally the first one up!" Well, at least my weekday efforts have been recognised ;-)
Thing is, I woke up at 6 when someone came in to do my IVs, but the venflon was no more, had blocked and leaked everywhere so it had to come out. And then Dr on call kindly came round for a good old stab at 7.30am. The same Doctor who told me no point in doing a long line on tuesday. Hope she was really annoyed having to do it. HarHar.
I had planned to get up around this time, once obs had been done and I finally had my morning IVs, but promptly fell back to sleep. Oh well, I guess I needed it.
So eventually I got up and very reluctantly did just 10 minutes walking on an incline of 5 to try and make the most of it, since I really didn't feel up to much. In fact, my temperature was slightly raised and I felt shivery, so this might have been why.
Still, that 10 minutes helped with clearance a tadge and it's always good to move around first thing to get this fluid moving off my limbs!
Still felt absolutely knackered and was all pale and faint, so I basically just did all my drugs and had a wash and got dressed ect, then lay on my bed dozing for the rest of the morning! Lushing it up on the weekend, I dunno.
Good thing was that come a doze/telly sesh and lunch and several teas, I felt pretty good again! And after 2pm IVs, I decided to venture oot and aboot in to the depths of Oxford street. I don't know why I do it to myself really... going on saturdays then getting really grumpy at all the other shoppers for just being there. How dare they! Still, I had a good old walk to and from the station, around Oxford street and all that, which I tried to keep going at a really brisk and important 'things to do' pace, weaving in and out of all those wanderers who were havin a faaaggg. Nice.
I did spend rather too much on some new clothes... I just really wanted some nice trendy tees and a little denim skirt. And a jumper. Ahem... Don't tell Mum and Dad.
It did cheer me up loads though and to be honest, my new clothes will benefit many on the ward since I won't have to recycle all my nice clothes as much and smell. That's my story and I'm sticking to it.
Couple of hours after dinner I did my harder session, where basically I warm up by doing 4 minutes at 6kmph on 4l O2, then ramp up the o2 to 10l and do 2 lots of 4 minutes at 8-9kmph with about 3-4 minutes walking in between and a 5 minute walk to cool down on 4l o2. So 8 minutes running today, the reason I didn't push on for a final 2 minutes was that I want to run early tomorrow since Mum and Dad are coming hopefully, for mothers day pleasantries. Can't wait to see 'em as always. We do have a good laugh together and you know when you just miss cuddles!
So I figured if I manage 3 lots of 2 minutes jogging in my early session, it doesn't matter so much if they are here when I'd normally do the session. However I'm hoping to then also do another 6 minutes in the evening. Aim for PB!!!! 12 minutes I hope! I'll see how the legs feel though. And I'll get a walk outside with the rents too.
I just hope I can get up with relative ease tomorrow! Earlier night maybe will help.
Sees yas xxx
Thing is, I woke up at 6 when someone came in to do my IVs, but the venflon was no more, had blocked and leaked everywhere so it had to come out. And then Dr on call kindly came round for a good old stab at 7.30am. The same Doctor who told me no point in doing a long line on tuesday. Hope she was really annoyed having to do it. HarHar.
I had planned to get up around this time, once obs had been done and I finally had my morning IVs, but promptly fell back to sleep. Oh well, I guess I needed it.
So eventually I got up and very reluctantly did just 10 minutes walking on an incline of 5 to try and make the most of it, since I really didn't feel up to much. In fact, my temperature was slightly raised and I felt shivery, so this might have been why.
Still, that 10 minutes helped with clearance a tadge and it's always good to move around first thing to get this fluid moving off my limbs!
Still felt absolutely knackered and was all pale and faint, so I basically just did all my drugs and had a wash and got dressed ect, then lay on my bed dozing for the rest of the morning! Lushing it up on the weekend, I dunno.
Good thing was that come a doze/telly sesh and lunch and several teas, I felt pretty good again! And after 2pm IVs, I decided to venture oot and aboot in to the depths of Oxford street. I don't know why I do it to myself really... going on saturdays then getting really grumpy at all the other shoppers for just being there. How dare they! Still, I had a good old walk to and from the station, around Oxford street and all that, which I tried to keep going at a really brisk and important 'things to do' pace, weaving in and out of all those wanderers who were havin a faaaggg. Nice.
I did spend rather too much on some new clothes... I just really wanted some nice trendy tees and a little denim skirt. And a jumper. Ahem... Don't tell Mum and Dad.
It did cheer me up loads though and to be honest, my new clothes will benefit many on the ward since I won't have to recycle all my nice clothes as much and smell. That's my story and I'm sticking to it.
Couple of hours after dinner I did my harder session, where basically I warm up by doing 4 minutes at 6kmph on 4l O2, then ramp up the o2 to 10l and do 2 lots of 4 minutes at 8-9kmph with about 3-4 minutes walking in between and a 5 minute walk to cool down on 4l o2. So 8 minutes running today, the reason I didn't push on for a final 2 minutes was that I want to run early tomorrow since Mum and Dad are coming hopefully, for mothers day pleasantries. Can't wait to see 'em as always. We do have a good laugh together and you know when you just miss cuddles!
So I figured if I manage 3 lots of 2 minutes jogging in my early session, it doesn't matter so much if they are here when I'd normally do the session. However I'm hoping to then also do another 6 minutes in the evening. Aim for PB!!!! 12 minutes I hope! I'll see how the legs feel though. And I'll get a walk outside with the rents too.
I just hope I can get up with relative ease tomorrow! Earlier night maybe will help.
Sees yas xxx
Friday 20 March 2009
Astronauticus face maskus for thou with the rubbish alveolus
Another rollercoaster of a day here at hotel chest. I'm not totally sure what to make of it all, as usual!
First thing was good, I got up and did 20 minutes treadmilling, quite easy, to limber up for my seshho with physio later. Legs and chest felt good doing that. Just as I'd finished my drainage and nebs and about to go back on the treadmill at 11, the Dr told me to go down to RFU to do my gas transfer thingy.
And that's pretty much where my mood was set in to a bad one... the last, and only other time I'd done a gas transfer was in December when I wasn't quite at my worst, but still pretty bad. It showed the my lung 'effectiveness' if you like (the amount of oxygen you actually diffuse in to your blood from what you breathe in) to be 41%. (Quite shit)
So here's me all... well my sats at rest are dead good now and my x-rays better ect ect so it MUST have increased. And it was 37%. (More shit).
So my effective lung function, despite having regained great volume and flow, is hovering at 40%.
I guess I knew it would still be kind of low since I'm so hypoxic when I exercise... but I just really hoped I could have a better number to look at to prove that things are really improving. So I felt a bit sad, to be quite honest.
After that I came back up and started the session with Physio, who now wanted to see just how much O2 I need to maintain sats above 90 when I jog.
Answer: 10 litres. Holy moose.
And for obvious reasons, you can't have more than 5l through nasal specs, so I'll be using a mask for my running now. Just not quite as neat and discreet, I have to say. But at least my sats were good! I did 10 minutes in total, in 2 x 4 minutes, and 1 x 2 minute intervals. Even though it was knackering, it was more because of my legs being tired and not used to the running then from lactic acid build up, which I was getting straight away before.
I was still grouchy and dispondant after the result of lung function, and then to really help things along, dr came back and told me to go for a ct scan to make sure that the pneumonia wasn't flaring up (they weren't impressed with my gas transfer). Of course I knew that it wasn't, coz I know how I felt when it was there badly.
Nonetheless, it was quite good to do a CT since I could have a sneakery peakery at the images and could instantly see that it was better. Much less grey all over the place.
Later on my consultant popped in which was a surprise, to tell me the good news - she'd been over the CT with the other consultant and they were both really chuffed at the difference!! Apparently there's a load of scarring which we knew, and still some shadowing which explains my unimproved gas transfer. BUT, there is far less of the shadowing and no more consolidation which means that the pneumonia is 'there' but not active. So yeah, a good cheer up that I definately needed.
I also had my walk outide, lovely as per, and glad it was nice and sunny still when I finally got the chance to get out! So there was my 3 sessions totalling an hour all done by 5pm, so I've had the evening to relax and recover. Good stuff.
Plans for the weekenders... hrm. I'll aim to get the morning walk and mid morning run sessions done at the same times as today, then probably will go for a little wander in London to go round the shops for a bit. Just to break it up a bit because weekends are sooo quite here in Bethnal Green!
Maybeeee topshop. Hahaha. But probably only to try on stuff, complain that topshop gear 'never fits right, and is made for people with really long bodies and really teeny ribcages' conclude that H and M kids is the only place I ever find anything decent to wear, then lurk in the sweet section of Topshop and buy something I know I'll actually get some use out of.
Sounds a laff! Righto poppets, take it sneezy!
xxx
First thing was good, I got up and did 20 minutes treadmilling, quite easy, to limber up for my seshho with physio later. Legs and chest felt good doing that. Just as I'd finished my drainage and nebs and about to go back on the treadmill at 11, the Dr told me to go down to RFU to do my gas transfer thingy.
And that's pretty much where my mood was set in to a bad one... the last, and only other time I'd done a gas transfer was in December when I wasn't quite at my worst, but still pretty bad. It showed the my lung 'effectiveness' if you like (the amount of oxygen you actually diffuse in to your blood from what you breathe in) to be 41%. (Quite shit)
So here's me all... well my sats at rest are dead good now and my x-rays better ect ect so it MUST have increased. And it was 37%. (More shit).
So my effective lung function, despite having regained great volume and flow, is hovering at 40%.
I guess I knew it would still be kind of low since I'm so hypoxic when I exercise... but I just really hoped I could have a better number to look at to prove that things are really improving. So I felt a bit sad, to be quite honest.
After that I came back up and started the session with Physio, who now wanted to see just how much O2 I need to maintain sats above 90 when I jog.
Answer: 10 litres. Holy moose.
And for obvious reasons, you can't have more than 5l through nasal specs, so I'll be using a mask for my running now. Just not quite as neat and discreet, I have to say. But at least my sats were good! I did 10 minutes in total, in 2 x 4 minutes, and 1 x 2 minute intervals. Even though it was knackering, it was more because of my legs being tired and not used to the running then from lactic acid build up, which I was getting straight away before.
I was still grouchy and dispondant after the result of lung function, and then to really help things along, dr came back and told me to go for a ct scan to make sure that the pneumonia wasn't flaring up (they weren't impressed with my gas transfer). Of course I knew that it wasn't, coz I know how I felt when it was there badly.
Nonetheless, it was quite good to do a CT since I could have a sneakery peakery at the images and could instantly see that it was better. Much less grey all over the place.
Later on my consultant popped in which was a surprise, to tell me the good news - she'd been over the CT with the other consultant and they were both really chuffed at the difference!! Apparently there's a load of scarring which we knew, and still some shadowing which explains my unimproved gas transfer. BUT, there is far less of the shadowing and no more consolidation which means that the pneumonia is 'there' but not active. So yeah, a good cheer up that I definately needed.
I also had my walk outide, lovely as per, and glad it was nice and sunny still when I finally got the chance to get out! So there was my 3 sessions totalling an hour all done by 5pm, so I've had the evening to relax and recover. Good stuff.
Plans for the weekenders... hrm. I'll aim to get the morning walk and mid morning run sessions done at the same times as today, then probably will go for a little wander in London to go round the shops for a bit. Just to break it up a bit because weekends are sooo quite here in Bethnal Green!
Maybeeee topshop. Hahaha. But probably only to try on stuff, complain that topshop gear 'never fits right, and is made for people with really long bodies and really teeny ribcages' conclude that H and M kids is the only place I ever find anything decent to wear, then lurk in the sweet section of Topshop and buy something I know I'll actually get some use out of.
Sounds a laff! Righto poppets, take it sneezy!
xxx
Thursday 19 March 2009
No freedom... yet.
Allo,
I appear, as usual, to be VERY much mistaken in my judegements. Just because when Drs and Nurses keep telling you you'll be getting out/finishing your IVs ect ect... it's quite customary to believe them. But nope, apparently the only person who I should listen to from now in is my consultant. Having not had a long line put in on monday or tuesday because the registrars kept telling me I'd only be on IVs till the end of the week, now it seems I really should have got one in to last till monday. Very grrr! So many unneccessary and painful venflons later, I'm still having IVs till monday. As planned... I wish people would get their facts right before just giving false hopes to us!
Never mind though, as all in all it was a good day and my chest is still pretty good. Mum came up and although we had to hang around for late ward rounds and an x-ray before finally getting our walk in the park, it was worth it and we did have an action packed game of scrabble while we waited. And tea and cake after... yummers.
I got up rather late compared to other days, as in 8.30! Woops... and by that time someone was already on the treamill for a bit, so I basically just decided to get up and chill out rather than my usual 2k morning sesh. Later on the physio wanted to do my oxygen levels whilst walking anyway, so I had a 10 minute brisk walk then.
I put it on 6kmph, 2% incline and started with no 02 at all just because I like to see what I'm working with. And 1-2 minutes in, sats were 78. Which is always a bit sad when they go in the 70s, especially since I was only walking. Ho hum though... at least it was a fast walk! So slipped the old nose specs back on on 3-4L, and maintained sats at about 90-92. Lovely and helpful and scarily knowledgable as the physio is, she did keep asking me loads of questions whilst I was doing it, even though she'd told me to focus on big deep breaths through the o2 pipes... so yeah, understanderbly, my sats dropped to 83 right at the end of the 10 minutes coz I was trying to talk! Waste of my valuable oxygen!
After a little natter with the Doc just after, and a quick x-ray (which I must say is a HUGE improvement on the last one I saw - just a load of scarring... but hardly any solid white chunks), we went for our 30 minute jaunt round the park and to the little cafe. And did it all fairly fast and chatting, so a good workout really.
I planned to do my little running sesh at about 8.30pm to allow food to go down... then had a teeny temperature spike so fell asleep untill that time, when someone else went on the treadmill for a while, so I kind of hung around till about 9.45 to do it. I did 3 minutes brisk walk, 2 minutes jogging, another 3 minutes walking, another 2minutes jogging, then 6 minutes walking to cool down. So only 4 minutes jogging tonight... short and sweet. However, the physio is coming at 11am tomorrow for my session, where I want to do 10 minutes, so at least my legs won't be too tired. I'll do 20 minutes first thing to stretch them out a bit first and make sure I'm awake!
And I mean it... finished by 8am latest to ensure that I actually get on it, and that I'm recovered in time for the big one! I think I'll try and push really hard for the running bits, as I really want to get that 10 minutes again. I'll have to see what my sats do and how tolerant of low sats the physio remains! Then to the park if it's nice... will be in order.
So... more IVs, more IV steroids (boooo) and then a firm "We'll talk" on monday. I shall let you know how my sesh went... oh the excitement.
xxx
I appear, as usual, to be VERY much mistaken in my judegements. Just because when Drs and Nurses keep telling you you'll be getting out/finishing your IVs ect ect... it's quite customary to believe them. But nope, apparently the only person who I should listen to from now in is my consultant. Having not had a long line put in on monday or tuesday because the registrars kept telling me I'd only be on IVs till the end of the week, now it seems I really should have got one in to last till monday. Very grrr! So many unneccessary and painful venflons later, I'm still having IVs till monday. As planned... I wish people would get their facts right before just giving false hopes to us!
Never mind though, as all in all it was a good day and my chest is still pretty good. Mum came up and although we had to hang around for late ward rounds and an x-ray before finally getting our walk in the park, it was worth it and we did have an action packed game of scrabble while we waited. And tea and cake after... yummers.
I got up rather late compared to other days, as in 8.30! Woops... and by that time someone was already on the treamill for a bit, so I basically just decided to get up and chill out rather than my usual 2k morning sesh. Later on the physio wanted to do my oxygen levels whilst walking anyway, so I had a 10 minute brisk walk then.
I put it on 6kmph, 2% incline and started with no 02 at all just because I like to see what I'm working with. And 1-2 minutes in, sats were 78. Which is always a bit sad when they go in the 70s, especially since I was only walking. Ho hum though... at least it was a fast walk! So slipped the old nose specs back on on 3-4L, and maintained sats at about 90-92. Lovely and helpful and scarily knowledgable as the physio is, she did keep asking me loads of questions whilst I was doing it, even though she'd told me to focus on big deep breaths through the o2 pipes... so yeah, understanderbly, my sats dropped to 83 right at the end of the 10 minutes coz I was trying to talk! Waste of my valuable oxygen!
After a little natter with the Doc just after, and a quick x-ray (which I must say is a HUGE improvement on the last one I saw - just a load of scarring... but hardly any solid white chunks), we went for our 30 minute jaunt round the park and to the little cafe. And did it all fairly fast and chatting, so a good workout really.
I planned to do my little running sesh at about 8.30pm to allow food to go down... then had a teeny temperature spike so fell asleep untill that time, when someone else went on the treadmill for a while, so I kind of hung around till about 9.45 to do it. I did 3 minutes brisk walk, 2 minutes jogging, another 3 minutes walking, another 2minutes jogging, then 6 minutes walking to cool down. So only 4 minutes jogging tonight... short and sweet. However, the physio is coming at 11am tomorrow for my session, where I want to do 10 minutes, so at least my legs won't be too tired. I'll do 20 minutes first thing to stretch them out a bit first and make sure I'm awake!
And I mean it... finished by 8am latest to ensure that I actually get on it, and that I'm recovered in time for the big one! I think I'll try and push really hard for the running bits, as I really want to get that 10 minutes again. I'll have to see what my sats do and how tolerant of low sats the physio remains! Then to the park if it's nice... will be in order.
So... more IVs, more IV steroids (boooo) and then a firm "We'll talk" on monday. I shall let you know how my sesh went... oh the excitement.
xxx
Wednesday 18 March 2009
It was a day of recovery. Sunny recovery though ;-)
Hola,
Well, as predictimondo, my legs remained pretty tired and achey from the massive increase in erm... my using them over the past few days. Which is fine, it means I'm getting WORKOUTS!! Not physiotherapy... workouts. Ha. So I basically got up early (7) first and foremost to wash my locks before the severe drought that was to be in Caplin. Then on to business - a 21 minute walk on the treaders covering 2km. So a PB of late, since it's normally been taking me about 24 minutes to cover the 2k. AND I did it at 3% incline so nerrr. The legs kind of held out but I pretty much could tell that today was not going to be a running day lol.
Instead, I decided to just go to the park after lunch and do 2 laps at a decent enough pace (no O2 remember!) for a 40 minute 'sesh'. So I'v still done an hour's walking today, much more than I would have been doing a few weeks back and this was an 'easy' day!
Other than the two walks I've been totally knackered feeling all day... not in an ill sort of way, just because of doing loads but that's ace anyway because I've pretty much got most of the day to do these self indulgent exercise, rest, eat, repeat type cycles in here. Passes the time nicely.
And I reckon just the whole thing of being in the ward makes you feel a bit jaded too, coz it's just not home! The waterpipe crisis was not too bad like I thought it would be... and I got to have a little recky of rivierer ward too. It's shite! Well old fashioned and not as clean looking as caplin... and the staff were giving me the eye for walking in... as if they hadn't been told people from caplin would be using the loos...tsk tsk. Glad I'm over here in the posh unit even if we do have momentary water shortages!
Chest wise, I'm doing well still, I'm coughing away but it's turned in to more of a dry, loose tickly sort of cough not all tight and gluggy. My sats are totally awesome at rest still, like I've been getting 98!! I mean that's bloody good. It's just the old overnight and exercise thingy where they drop away to the 80s. Ah... I'm a child of the 80s and I can't hide it! I've been doing all my sessions alone so no pulse oximetre of late, but I imagine I'll be sticking with the same 02 requirements for a little while - 3-4 litres for exertion and 1 litre overnight. S'all good though. I reckon come the day where I take the old portable cyclinder out for a proper run, people will think I'm some astronaut in training or something. Cooool.
I'm really hoping they take me back off hydrocortisone tomorrow and maybe even finish IVs and get out before the weekend... I don't think there's anything else that can be achieved with more antibiotics now since my infection levels are totally stamped now. And you guessed it, I still hate IV steroids!! My weight is a joke - 44 this morning, 46.3 this afternoon, and then probably somewhere in between now. Proper yo-yo-er me. I can feel it when I'm bloating out - my fingers are all puffy and my shoes feel tight lol!
My loverly Mum is coming up tomorrow, which is always fabby. Totally breaks up the time when we can have loads of chats and cuddles and dinner at the nice veggie restaurant!
Exercise for tomorrow... I think today will have done my legs a world of good to get over the past few days, so I think I'll go for 10 minutes jogging again. And the usual 40-50 minutes walking. Bring it onnnn xxx
Well, as predictimondo, my legs remained pretty tired and achey from the massive increase in erm... my using them over the past few days. Which is fine, it means I'm getting WORKOUTS!! Not physiotherapy... workouts. Ha. So I basically got up early (7) first and foremost to wash my locks before the severe drought that was to be in Caplin. Then on to business - a 21 minute walk on the treaders covering 2km. So a PB of late, since it's normally been taking me about 24 minutes to cover the 2k. AND I did it at 3% incline so nerrr. The legs kind of held out but I pretty much could tell that today was not going to be a running day lol.
Instead, I decided to just go to the park after lunch and do 2 laps at a decent enough pace (no O2 remember!) for a 40 minute 'sesh'. So I'v still done an hour's walking today, much more than I would have been doing a few weeks back and this was an 'easy' day!
Other than the two walks I've been totally knackered feeling all day... not in an ill sort of way, just because of doing loads but that's ace anyway because I've pretty much got most of the day to do these self indulgent exercise, rest, eat, repeat type cycles in here. Passes the time nicely.
And I reckon just the whole thing of being in the ward makes you feel a bit jaded too, coz it's just not home! The waterpipe crisis was not too bad like I thought it would be... and I got to have a little recky of rivierer ward too. It's shite! Well old fashioned and not as clean looking as caplin... and the staff were giving me the eye for walking in... as if they hadn't been told people from caplin would be using the loos...tsk tsk. Glad I'm over here in the posh unit even if we do have momentary water shortages!
Chest wise, I'm doing well still, I'm coughing away but it's turned in to more of a dry, loose tickly sort of cough not all tight and gluggy. My sats are totally awesome at rest still, like I've been getting 98!! I mean that's bloody good. It's just the old overnight and exercise thingy where they drop away to the 80s. Ah... I'm a child of the 80s and I can't hide it! I've been doing all my sessions alone so no pulse oximetre of late, but I imagine I'll be sticking with the same 02 requirements for a little while - 3-4 litres for exertion and 1 litre overnight. S'all good though. I reckon come the day where I take the old portable cyclinder out for a proper run, people will think I'm some astronaut in training or something. Cooool.
I'm really hoping they take me back off hydrocortisone tomorrow and maybe even finish IVs and get out before the weekend... I don't think there's anything else that can be achieved with more antibiotics now since my infection levels are totally stamped now. And you guessed it, I still hate IV steroids!! My weight is a joke - 44 this morning, 46.3 this afternoon, and then probably somewhere in between now. Proper yo-yo-er me. I can feel it when I'm bloating out - my fingers are all puffy and my shoes feel tight lol!
My loverly Mum is coming up tomorrow, which is always fabby. Totally breaks up the time when we can have loads of chats and cuddles and dinner at the nice veggie restaurant!
Exercise for tomorrow... I think today will have done my legs a world of good to get over the past few days, so I think I'll go for 10 minutes jogging again. And the usual 40-50 minutes walking. Bring it onnnn xxx
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