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
Friday, 3 July 2009
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
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