So there I was all geared up for the afternoon sesh, getting kind of nervy and sweaty like you do, and it started like all my other sessions this week: a few minutes brisk walking. But no, today was different for my first running interval, which I was thinking I'd do the same 2 minutes as before, I ended up doing 6 whole minutes without stopping. After the first 2 minutes, I was getting a bit tired but just felt like carrying on for another minute and see if I could do 3. After that I was like, well that wasn't too bad, why not try for 4? And then as the 4th minute passed and I got cocky, I just thought... hang on, I'm on to something here. I'm just going to do another whole 2 minutes and THEN I'll have a walk. And I freaking did!!
I was a bit too knackered and full of lactic acid at the end of this to actually utter any form of exitement physically, but there were some right fireworks going on inside. Hooo. Yes.
So I went on and had a good long 4 minute walk after that, before doing two more 2 minute intervals, slightly faster, which means I have done 10 minutes jogging today! 10 just sounds so good compared to single digits. I'm really surprised at the speed it's been coming on fitness wise this week.
The big session overall was 3.4km, in about 30 minutes, and I had also done my morning 2km, plus a 20 minute stroll in the park which was well worth the wait. So I've covered about 7km in total today. It's a definate thumbs up, but I reckon tomorrow, I'll aim to just do the same again rather than adding again.
Just because I've increased the training every day for the past few days and just as anyone's who did this in training would be, my legs are getting very tired and a little bit achey from lots of wear and a bit of lactic acid stuff. I was also very sleepy and slightly shakey after the session, and my temp was slightly high - which is probably my body trying to get used to all this exercise by revving up my metabolism and all that shizzle.
So if I can equal today, I'll be happy, and if my legs are tired and I half the running, that'd be fine too. I mean realistically, I know that to a seasoned and fit runner I'm doing very little, but I would never have run everyday and pushed hard everyday when I was fit, so I think the same rules apply now. It's all relative I spose.
Oh and in regular LCH madness style, I've been prewarned that between 7.30am and evening, there will be NO RUNNING WATER ON THE WARD!! Erm... yes, in a hospital. No hand washing... all day... yep. And for each pee, I will need to venture to rivierrer ward where the elitist members will still have fresh water. I'm going to have to plan ahead with the toilet trips, then. I mean, like at least 5-10 minutes before I envisage it getting serious... especially since my kidneys have now decided they DO know how to get rid of water, and I'm losing a pound or two a day in fluid weight. Oh what an interesting day I've got ahead. I can't wait to see how all the nurses will manage... presumeably loads of clorohexidine wipes and hand sanitisers.
Right, I'll have to be up early to wash my hair! So nighty night and I'll be back for nattering soon. xxx
Tuesday, 17 March 2009
Monday, 16 March 2009
65%??!! Ha. Ha. In the words of Bush, I was grossly misunderestimated!
Oh today was a gooood health day. Like, unbe-freakin-lievable. I blew 88% in lung function! I was so surprised when I saw the print off that my mouth was hanging open and then I was grinning ear to ear for about 3 hours lol. So lets just get this right... I have had just 1 week IVs and IV steroids, and my lung functions have shot up 30%. Literally the whole team were shocked by it too cause they (and certainly me) didn't really imagine they'd go much above 70-75% at least a good few months from now. And I was all ready to accept never going above 80-85% EVER!
The Doc asked me what do I think has made so much difference... and to be honest, I reckon it was getting back to some intense cardio exercise again, even though I've only been doing it a few days. This combined with a shitload of antibiotics before and during the admission has cleared my chest no end, and what I'm bringing up is the cleanest and thinnest I've seen it since forever.
Now, of course, there's always one or two things that bring you back off of cloud nine, and if I could write those bits in teeeeny text then I would. Oh wait... there you go... hahaha:
My effective lung function is still probably only about 50-60% due to poor diffusion from the alveolar damage... the fact that I blow 88% means that my lung volumes have shot up and the rate I can empty and fill them is much faster - so they are getting stretchy again. This diffusion issue is the reason why I need so much oxygen to do proper exercise... but it is improving all the time.
Doc said my lungs sounded really clear, which is the first time since all of this, that there has been no crackles!! So there is almost no lurky crappy pluggners or fluidness at my lung bases.
What was quite funny today was that the venflon nightmareishness is rearing it ugly little needly head again.... Since I was scheduled for a long line insertion today for the rest of my IVs, the venflon in my wrist was taken out (3 day rule anyway) after 2pm IVs. I then patiently waited for the registrar to come round and do her thang... and waited, and waited, didn't get a walk in the park... waited some more, then when 6pm rolled round and nurse came to do my steroids, I'm like... er, you're going to HATE MEEEEEE.... AHAHAHAHA. No liney in armey. Houston, we have a problem.
And in all her trust in me, she asks "Well how am I meant to give you your hydrocortisone then?" Like I would magically remember some emergency venous access I had just for times like these.
But alas, no. So on call Doctor comes round and kindly inserts yet another venflon. In my hand. So now I'm a grubby grubber too with only partially washed hands. They had better come and do a long line tomorrow or I'll smear my filthy unwashed hand all over EVERYWHERE before they can shtop meee.
They also did my pre-tobramycin levels earlier and told me to make sure I was around for 3pm for post levels. And no-one came. My antibiotic peak was wasted huh. Which means they have to do post levels tonight. So a blood test at 11pm. I'm so going to do a really good impression of being asleep so they feel really guilty coming in at that ungodly hour, and then in return tell off the day doctos for neglecting me and leaving their dirty work the night staff. What goes around comes around. Yeahhh I'm nasttty.
Anywhom, a good day at the office, I'll be carrying on with this exercise program. In fact, I was so busy rambling about my veins that I forgot to tell you that I have done 8 minutes jogging today!! 3 lots of 2 minutes, and 2 lots of 1 minute at a faster pace. Get me upping the pace lol. That was within a 3km overall session, the rest of it I walked at about 6kmph. Wicked.
xxx
The Doc asked me what do I think has made so much difference... and to be honest, I reckon it was getting back to some intense cardio exercise again, even though I've only been doing it a few days. This combined with a shitload of antibiotics before and during the admission has cleared my chest no end, and what I'm bringing up is the cleanest and thinnest I've seen it since forever.
Now, of course, there's always one or two things that bring you back off of cloud nine, and if I could write those bits in teeeeny text then I would. Oh wait... there you go... hahaha:
My effective lung function is still probably only about 50-60% due to poor diffusion from the alveolar damage... the fact that I blow 88% means that my lung volumes have shot up and the rate I can empty and fill them is much faster - so they are getting stretchy again. This diffusion issue is the reason why I need so much oxygen to do proper exercise... but it is improving all the time.
Doc said my lungs sounded really clear, which is the first time since all of this, that there has been no crackles!! So there is almost no lurky crappy pluggners or fluidness at my lung bases.
What was quite funny today was that the venflon nightmareishness is rearing it ugly little needly head again.... Since I was scheduled for a long line insertion today for the rest of my IVs, the venflon in my wrist was taken out (3 day rule anyway) after 2pm IVs. I then patiently waited for the registrar to come round and do her thang... and waited, and waited, didn't get a walk in the park... waited some more, then when 6pm rolled round and nurse came to do my steroids, I'm like... er, you're going to HATE MEEEEEE.... AHAHAHAHA. No liney in armey. Houston, we have a problem.
And in all her trust in me, she asks "Well how am I meant to give you your hydrocortisone then?" Like I would magically remember some emergency venous access I had just for times like these.
But alas, no. So on call Doctor comes round and kindly inserts yet another venflon. In my hand. So now I'm a grubby grubber too with only partially washed hands. They had better come and do a long line tomorrow or I'll smear my filthy unwashed hand all over EVERYWHERE before they can shtop meee.
They also did my pre-tobramycin levels earlier and told me to make sure I was around for 3pm for post levels. And no-one came. My antibiotic peak was wasted huh. Which means they have to do post levels tonight. So a blood test at 11pm. I'm so going to do a really good impression of being asleep so they feel really guilty coming in at that ungodly hour, and then in return tell off the day doctos for neglecting me and leaving their dirty work the night staff. What goes around comes around. Yeahhh I'm nasttty.
Anywhom, a good day at the office, I'll be carrying on with this exercise program. In fact, I was so busy rambling about my veins that I forgot to tell you that I have done 8 minutes jogging today!! 3 lots of 2 minutes, and 2 lots of 1 minute at a faster pace. Get me upping the pace lol. That was within a 3km overall session, the rest of it I walked at about 6kmph. Wicked.
xxx
Sunday, 15 March 2009
All oxygen cylinders firing... 6 minutes running... GO! GO! GO!!
The day came!! I did the 6 minutes - broken in to 6 x 1 minute within a 20 minute session with the physio on today. He was all up for getting me running too, so after predictable sats droppage with certain speeds (same as yesterday), we just whacked up the 02 to 4L, and went right ahead with the intervals! I felt good all in all. Knackered like I used to feel after running a 5k race, but good. My sats were at 83 by the end of the last rep, but they were higher than that (84-88) for the other runs, it was just the cumulative oxygen consumption I think. It was so good to 'feel' the running again, even for what it was. It was still running, I still ran for 6 minutes in total, and I'm still chuffed about it, so nothing can take that away.
Physio was pleased with it and is keen to do the same sesh tomorrow. So in total today, I had my 20 minute (2km) walk first thing, then a little stroll in the park with Mum and Dad, who bought a great picnic for us to have in the sunshine (I felt so civilised lol), then a bit later, 'THE session', which was tha 20 minutes, followed by 10 minutes walking to recover (Another 3km done). Hehe... got to say I'm so proud to say I walked to recover. I used to collapse on my bed for two hours to recover. So about 1 hour of solid exercise again.
I sarrrrpose I'll aim for an hour in the same format tomorrow, although times may be skewiff because Mondays are ward round days too. I guess I'll have the early walkies done by 8, so that I can be scrubbed up, nebbed, and breakied in time to go for lung functions. I'm gonna put the funk in lung function as well. That spirometer will not know what to do with itself when I blow in it. Whahahaha.
I reckon since I've been so well exercised for the past few days I could blow about 65% now. I reckon my volumes will be up, so we'll see. And to be honest, I don't really care what that piece of paper says as long as I am feeling good. What. Ever. Is all I can say... the spirometry had my lung functions as 75% a couple of months ago and yet gas transfer showed my effective lung function to be about 30-40%. So I'll not be too anal on numbers.
Well, I'll be updating with the thrilling Drs verdicts and my blows, and hopefully more hardcore TRAINING!!! Seeyas xxx
Physio was pleased with it and is keen to do the same sesh tomorrow. So in total today, I had my 20 minute (2km) walk first thing, then a little stroll in the park with Mum and Dad, who bought a great picnic for us to have in the sunshine (I felt so civilised lol), then a bit later, 'THE session', which was tha 20 minutes, followed by 10 minutes walking to recover (Another 3km done). Hehe... got to say I'm so proud to say I walked to recover. I used to collapse on my bed for two hours to recover. So about 1 hour of solid exercise again.
I sarrrrpose I'll aim for an hour in the same format tomorrow, although times may be skewiff because Mondays are ward round days too. I guess I'll have the early walkies done by 8, so that I can be scrubbed up, nebbed, and breakied in time to go for lung functions. I'm gonna put the funk in lung function as well. That spirometer will not know what to do with itself when I blow in it. Whahahaha.
I reckon since I've been so well exercised for the past few days I could blow about 65% now. I reckon my volumes will be up, so we'll see. And to be honest, I don't really care what that piece of paper says as long as I am feeling good. What. Ever. Is all I can say... the spirometry had my lung functions as 75% a couple of months ago and yet gas transfer showed my effective lung function to be about 30-40%. So I'll not be too anal on numbers.
Well, I'll be updating with the thrilling Drs verdicts and my blows, and hopefully more hardcore TRAINING!!! Seeyas xxx
Saturday, 14 March 2009
Or just don't do it...
Ahem. So today WAS a good day overall, I have done an hour of pretty good exercise in total. Hoooever... my dreamy dreams of doing 6 minutes of jogging during the session, were not to be today. I was allowed... wait for it - ONE minutes. One poxy minute, then forced to go back to a walk because my sats had gone to 84 on 2 litres. So we put it up to 3L for the rest of the sesh so I could carry on with a brisk walk and keep my sats at 89-90.
It was a bit dissapointing but at least I know exactly where I'm at with the running now, before I was unaware they would go quite as low. So the plan is to repeat that session tomorrow with whoevers about, and probably put the o2 up to 4L when I do a minute or two of running, then back to brisk walk and recover, then hopefully be able to do more running intervals. So as before, it's very much work in progress.
If the physio on tomorrow is a bit more leniant and lets me, then I'm just going to keep the o2 at 3-4 L and try and get those 6 minutes in to the 20 minutes session.
So after the 20 minutes morning session, I had that other 20 minutes quite intense with Physio, then after recovering with the O2 till heart rate had gone down and sats were normal, I snuck out to the park for 20 minutes and had a nice briskish walk (no O2, but I don't really different without it with the walking now).
I got back and conked out on my bed so obviously I'm very very well exercise today!
My Ma and Pa are coming tomorrow, so I'll be having a nice walk in the park with them, plus a morning session of 20-25 minutes. Can't wait hehehe.
In other news, I still hate hydrocortisone. It's making me bloat like a trooper. I was 43kg on monday, and now I'm 47! So nearly a kg a day. And given that my appetite has gone back to normal now, methinks this fluidiness is not healthy! God, I've never been so eager to get back on steroid tablets for their lack of side effects!
I'm now refusing the overnight fluids as when I think about it, I certainly don't need any extra salt to make me retain water. The litre bag you have overnight is isotonic (0.9% salt), so contains a whopping 9g of salt overnight! On top of my regular food salt intake!! No wonder I wake up bloated... Jeez. So I think cutting that sodium injection and just having lots of plain water may ease some of the puffiness and make me feel a bit more normal , although I doubt my weight will be normal till a few days after coming off IVs. It's funny really as they've been on at me to gain weight for ages, now it's out of control and not the right kind! All or nothing, me.
Righto, I'll update tomorrow with more enthralling exercise bloggage. Till then take care xxx
It was a bit dissapointing but at least I know exactly where I'm at with the running now, before I was unaware they would go quite as low. So the plan is to repeat that session tomorrow with whoevers about, and probably put the o2 up to 4L when I do a minute or two of running, then back to brisk walk and recover, then hopefully be able to do more running intervals. So as before, it's very much work in progress.
If the physio on tomorrow is a bit more leniant and lets me, then I'm just going to keep the o2 at 3-4 L and try and get those 6 minutes in to the 20 minutes session.
So after the 20 minutes morning session, I had that other 20 minutes quite intense with Physio, then after recovering with the O2 till heart rate had gone down and sats were normal, I snuck out to the park for 20 minutes and had a nice briskish walk (no O2, but I don't really different without it with the walking now).
I got back and conked out on my bed so obviously I'm very very well exercise today!
My Ma and Pa are coming tomorrow, so I'll be having a nice walk in the park with them, plus a morning session of 20-25 minutes. Can't wait hehehe.
In other news, I still hate hydrocortisone. It's making me bloat like a trooper. I was 43kg on monday, and now I'm 47! So nearly a kg a day. And given that my appetite has gone back to normal now, methinks this fluidiness is not healthy! God, I've never been so eager to get back on steroid tablets for their lack of side effects!
I'm now refusing the overnight fluids as when I think about it, I certainly don't need any extra salt to make me retain water. The litre bag you have overnight is isotonic (0.9% salt), so contains a whopping 9g of salt overnight! On top of my regular food salt intake!! No wonder I wake up bloated... Jeez. So I think cutting that sodium injection and just having lots of plain water may ease some of the puffiness and make me feel a bit more normal , although I doubt my weight will be normal till a few days after coming off IVs. It's funny really as they've been on at me to gain weight for ages, now it's out of control and not the right kind! All or nothing, me.
Righto, I'll update tomorrow with more enthralling exercise bloggage. Till then take care xxx
Thursday, 12 March 2009
Just DO it
Hey hey!
Last night, I did 4 minutes in total of jogging at 5mph!! 4 minutes, and straight back to brisk walk, no stopping! Had to tell you that coz I'm so chuffed. Best part was not just the being able to do it, but the fact that when I was getting puffed out, I starting taking these big deep breaths, and it DIDN'T HURT! And only made me cough a few times and right at the end. I've been doing my draining/ active breathing cycles before and after exercise recently which seems to help stop me coughing and bringing up stuff the whole of the workout. I mean, I can handle a bit of a cough every few minutes, but when it's constant it really affects my ability to catch my breath. So that's another thing that's right back on track!
Plus yesterday I had done 30 minutes on the treadmill earlier, a walk in to town and back with mum, and some walking either side of the jogging. So that's about an hour of exercise. Brilliant. I'm aiming for the same today -I had my first 20 minutes done at 9am (fancied a saturday lie in lol), then I'm doing my oxygen levels with running with the physio today, so that'll be 20 minutes (probably aim for 6 minutes total of jogging and 14 of brisk walking). Then probably not too long after, while it's still light, I'd like a walk in the park for 20 minutes. So yep, plannage, and I expect if yesterdays anything to go by, I'll be shattered come 10pm! I could barely keep my eyes open last night hence the lack of update in the evening...
My chest is so clear compared to a few weeks ago and much better than when I came in. I'm hardly bringing up anything! And I've had no temps at all since coming in, and just loads of energy really, like I actually want to get up and get started with the day. Which sounds so... 'huh so what' but I really really missed my old energy and feeling up to doing things. It wasn't like I just wasn't up to doing parties and sports, it was everything - I could only just manage to be up and showered by midday on a good day, had to lie down and catch my breath after a shower, got tight and felt like having a heart attack going up the stairs, couldn't have proper conversations, and could only walk for 10 minutes before needing to fall asleep and recover for a couple of hours. So when I think of all that I keep realising that I've come so far now and it just makes me really determined on carry on and beat this. Like, the fact I'm going to be using oxygen again to get my exercise back on track seemed like a set back, but actually when I compare how much I'll be using to get such good results, it's brilliant. At one point, 5Litres o2 would get my sats to 81% whilst walking at 1kph on the treadmill, and then I would be forced to get off by the physio. Now, 2 litres keeps my sats nicely above 90% whilst I walk at about 5kph for as long as I like. And 3 Litres allows me to run almost comfortably.
With this progress I just can't wait for say, 6 months down the line, when I doubt I'll need any oxygen to run, and may be able to run for 20 minutes or so in one go. We'll see, if it takes longer it takes longer, but now I feel so much more positive about the future for my sportiness.
XXX
Last night, I did 4 minutes in total of jogging at 5mph!! 4 minutes, and straight back to brisk walk, no stopping! Had to tell you that coz I'm so chuffed. Best part was not just the being able to do it, but the fact that when I was getting puffed out, I starting taking these big deep breaths, and it DIDN'T HURT! And only made me cough a few times and right at the end. I've been doing my draining/ active breathing cycles before and after exercise recently which seems to help stop me coughing and bringing up stuff the whole of the workout. I mean, I can handle a bit of a cough every few minutes, but when it's constant it really affects my ability to catch my breath. So that's another thing that's right back on track!
Plus yesterday I had done 30 minutes on the treadmill earlier, a walk in to town and back with mum, and some walking either side of the jogging. So that's about an hour of exercise. Brilliant. I'm aiming for the same today -I had my first 20 minutes done at 9am (fancied a saturday lie in lol), then I'm doing my oxygen levels with running with the physio today, so that'll be 20 minutes (probably aim for 6 minutes total of jogging and 14 of brisk walking). Then probably not too long after, while it's still light, I'd like a walk in the park for 20 minutes. So yep, plannage, and I expect if yesterdays anything to go by, I'll be shattered come 10pm! I could barely keep my eyes open last night hence the lack of update in the evening...
My chest is so clear compared to a few weeks ago and much better than when I came in. I'm hardly bringing up anything! And I've had no temps at all since coming in, and just loads of energy really, like I actually want to get up and get started with the day. Which sounds so... 'huh so what' but I really really missed my old energy and feeling up to doing things. It wasn't like I just wasn't up to doing parties and sports, it was everything - I could only just manage to be up and showered by midday on a good day, had to lie down and catch my breath after a shower, got tight and felt like having a heart attack going up the stairs, couldn't have proper conversations, and could only walk for 10 minutes before needing to fall asleep and recover for a couple of hours. So when I think of all that I keep realising that I've come so far now and it just makes me really determined on carry on and beat this. Like, the fact I'm going to be using oxygen again to get my exercise back on track seemed like a set back, but actually when I compare how much I'll be using to get such good results, it's brilliant. At one point, 5Litres o2 would get my sats to 81% whilst walking at 1kph on the treadmill, and then I would be forced to get off by the physio. Now, 2 litres keeps my sats nicely above 90% whilst I walk at about 5kph for as long as I like. And 3 Litres allows me to run almost comfortably.
With this progress I just can't wait for say, 6 months down the line, when I doubt I'll need any oxygen to run, and may be able to run for 20 minutes or so in one go. We'll see, if it takes longer it takes longer, but now I feel so much more positive about the future for my sportiness.
XXX
I'm not going to lie. It was a less than perfect day.
Sorry for bad news here... I hate always being in the shizzle. Here goes.
Firstly, lung functions were up 4% which was the good part, however sats have been smarmily sticking to 90-92 first thing in the morning and 80-88 with exercise.
Secondly, Adam and I have to give things a rest for now while we are both struggling a bit with chest infections and frequent relapses/IVs. We were individually given the talk by our consultant who pointed out some things that had been in the back of my mind but I didn't want to admit to, and in the end, we've been responsible enough to just be grateful that we have eachother even though it's not practical to be an item for now. Doesn't rule it out for when we're healthier though so I'll at least try to be positive. And will still be there for Adz no matter what. I hate him being sad though, makes me so sad too. I wish there was a way to make the problems go away but I suppose life is like that and sometimes you just have to accept things and get on with it. So for now we'll both be working on getting superfit and healthy and making our lungs the best they can be.
And the ganache on the gateux was that I've been told to stay in for the full two weeks I'm on IVs, so that a) we can carry on with IV steroids to be sure that they are definately getting to where they need to; and b) so that Dr can make sure that I'm as good as possible before going back home. So there we have it - I learned to do my own ivs, got all cocky about getting out on home IVs for the weekend, and now have been put right back in my place. Harrumph, is all I can say. Oh the boredom... now I know I'm in for the two weeks, I'm all twitchy and bored. Soooo - my masterplan is to not give in to boredom. I shall construct my grumpy bitchness to ultra-hard working physio womanness.
First IVs and disconnecting fluids is at 6am, so I've already been getting up quite early, at about 7.30 to do my hair and morning meds before breakfast, so I figured I'd carry on with the routine and get my first physio sesh on the treadmill at about 7.15 for 20 minutes. This will be the first time in AGES that I've done exercise in the morning due to lung stiffness and being so out of breath, but now that I'm less tight and I have the o2 on anyway, it seems like a really good way to improve my morning erm... functioning. Then have a scrub and wash my barnet, then breakfast and pulmozyme, then probably tea and chatting in the corridor with Adam, then some studying for an hour or two, do any financey stuff to be sorted, then chill/wait for dr to come round, then lunch, IVs, then more chilling and studying, do some more exercise, like 20-30 minutes, then dinner. And IVs. Followed by some phonecalls, chilling, internet, telly, yet more IVs before bed and finals nebs/pills. And I think I'm exhausted just writing that! Which is shocking as it's not really that much to do LOL. I don't know how I'll ever do as much as a normal person again!
I did get a very good long chat with one of the physios today who I'd not met before and she was really helpful, like went through my active breathing cycles (that I currently do with physio instead of accapella due to chest pain) and shoed me a few things to add in. And also since we've found that I'm still quite hypoxic with walking, and this could be the reason why I'm not making fast progress with my fitness, we chatted about portable o2 again. Basically it's a teeny generator that you can carry in a rucksack allowing you do wear it for more vigorous exercise without it weighing you down much/ being bulky. And depending what the oximetre shows when I do a proper exercise test next week, I think I may take her up on it.
I don't like using it, but I've realised that being anal and ignoring the fact you need it doesn't make the hypoxia go away. And lets be frank, I wish I could jog for more than 1-2 minutes without having to stop for 10. We shall see.
Med wise, I've been given NAC sachets to help thin the sputum more and I think it's really helping me clear stuff. Plus I had a word with the dieticien about my tummy and the fact that I am throwing up in my mouth again quite often these days where the lansoprasole used to stop all that. So I'm doing ranitidine as well now and hopefully no more messy sick-burps. Mmm I love my body.
Anyway like I said, sorry to have a negative post, but hopefully soon I'll have loads of good news to waffle with! Take it fleasy xxx
Firstly, lung functions were up 4% which was the good part, however sats have been smarmily sticking to 90-92 first thing in the morning and 80-88 with exercise.
Secondly, Adam and I have to give things a rest for now while we are both struggling a bit with chest infections and frequent relapses/IVs. We were individually given the talk by our consultant who pointed out some things that had been in the back of my mind but I didn't want to admit to, and in the end, we've been responsible enough to just be grateful that we have eachother even though it's not practical to be an item for now. Doesn't rule it out for when we're healthier though so I'll at least try to be positive. And will still be there for Adz no matter what. I hate him being sad though, makes me so sad too. I wish there was a way to make the problems go away but I suppose life is like that and sometimes you just have to accept things and get on with it. So for now we'll both be working on getting superfit and healthy and making our lungs the best they can be.
And the ganache on the gateux was that I've been told to stay in for the full two weeks I'm on IVs, so that a) we can carry on with IV steroids to be sure that they are definately getting to where they need to; and b) so that Dr can make sure that I'm as good as possible before going back home. So there we have it - I learned to do my own ivs, got all cocky about getting out on home IVs for the weekend, and now have been put right back in my place. Harrumph, is all I can say. Oh the boredom... now I know I'm in for the two weeks, I'm all twitchy and bored. Soooo - my masterplan is to not give in to boredom. I shall construct my grumpy bitchness to ultra-hard working physio womanness.
First IVs and disconnecting fluids is at 6am, so I've already been getting up quite early, at about 7.30 to do my hair and morning meds before breakfast, so I figured I'd carry on with the routine and get my first physio sesh on the treadmill at about 7.15 for 20 minutes. This will be the first time in AGES that I've done exercise in the morning due to lung stiffness and being so out of breath, but now that I'm less tight and I have the o2 on anyway, it seems like a really good way to improve my morning erm... functioning. Then have a scrub and wash my barnet, then breakfast and pulmozyme, then probably tea and chatting in the corridor with Adam, then some studying for an hour or two, do any financey stuff to be sorted, then chill/wait for dr to come round, then lunch, IVs, then more chilling and studying, do some more exercise, like 20-30 minutes, then dinner. And IVs. Followed by some phonecalls, chilling, internet, telly, yet more IVs before bed and finals nebs/pills. And I think I'm exhausted just writing that! Which is shocking as it's not really that much to do LOL. I don't know how I'll ever do as much as a normal person again!
I did get a very good long chat with one of the physios today who I'd not met before and she was really helpful, like went through my active breathing cycles (that I currently do with physio instead of accapella due to chest pain) and shoed me a few things to add in. And also since we've found that I'm still quite hypoxic with walking, and this could be the reason why I'm not making fast progress with my fitness, we chatted about portable o2 again. Basically it's a teeny generator that you can carry in a rucksack allowing you do wear it for more vigorous exercise without it weighing you down much/ being bulky. And depending what the oximetre shows when I do a proper exercise test next week, I think I may take her up on it.
I don't like using it, but I've realised that being anal and ignoring the fact you need it doesn't make the hypoxia go away. And lets be frank, I wish I could jog for more than 1-2 minutes without having to stop for 10. We shall see.
Med wise, I've been given NAC sachets to help thin the sputum more and I think it's really helping me clear stuff. Plus I had a word with the dieticien about my tummy and the fact that I am throwing up in my mouth again quite often these days where the lansoprasole used to stop all that. So I'm doing ranitidine as well now and hopefully no more messy sick-burps. Mmm I love my body.
Anyway like I said, sorry to have a negative post, but hopefully soon I'll have loads of good news to waffle with! Take it fleasy xxx
Wednesday, 11 March 2009
Yep, another uneventful yet pleasant day at the Inn.
Howdee. Not too much to report since I don't do an awful lot in here, and can't go out much since iv meds are four times a day at the mo, so not a big enough gap! I am however feeling fairly well compared to how I was a couple of months ago, so it's like a walk in the park really this time. I decided to split my exercise in to two sessions so I could do more with less tiredness. So in the morning I did 20 minutes at 4.4kph, on 2 litres O2, then in the afters I did 20 minutes at 4.6kph followed by 5 minutes at 3 to cool down a bit. I was breathy but felt good for it so all in all, it could me much worse fitness wise!
Tomorrow holds the day of reckoning where main consultant comes round after lung functions, weigh ins ect ect. So I'm hoping she's in a good mood and will let me do home IVs asap. The dr today said that the IV steroids can prolly stop tomorrow as it looks like the pills are going in okay, although the proper levels need to be checked. So hopefully back to minimal side effects. Having said that... I'll miss my enormous appetite if it goes back to normal after. I have eaten more in the past days then I have been in a week recently! Today I've had:
Bran flakes with milk, orange juice, and a yoghurt
One of the fresubin supplement drinks (400kcal)
Shephards pie, peas, swede, and pear and chocolate crumble with custard
Some little cake thingy that lovely cake lady (louis' mum) made
Beef goulash and dumplings, salad, more swede, more crumble and custard, and an apple
Another fresubin drink, crisps, and two more yogurts. And loads of water of course. And ahem... creon. LOL.
I mean.... I know I need to eat loads of calories but jeez!! I don't know what's come over me and to be honest, I could carry on if I weren't concerned for my stomach's ability to suddenly have so much! Absolute fatty. Nom, nom, nom.
So I'm thinkinnn, lung functions would look dazzling at about 65% tomorrow. Yes perlease... Cummonn drugs, exercise and food work your magic.
I'll have news tomorrow on my escapage. Stay cool amigos xxx
Tomorrow holds the day of reckoning where main consultant comes round after lung functions, weigh ins ect ect. So I'm hoping she's in a good mood and will let me do home IVs asap. The dr today said that the IV steroids can prolly stop tomorrow as it looks like the pills are going in okay, although the proper levels need to be checked. So hopefully back to minimal side effects. Having said that... I'll miss my enormous appetite if it goes back to normal after. I have eaten more in the past days then I have been in a week recently! Today I've had:
Bran flakes with milk, orange juice, and a yoghurt
One of the fresubin supplement drinks (400kcal)
Shephards pie, peas, swede, and pear and chocolate crumble with custard
Some little cake thingy that lovely cake lady (louis' mum) made
Beef goulash and dumplings, salad, more swede, more crumble and custard, and an apple
Another fresubin drink, crisps, and two more yogurts. And loads of water of course. And ahem... creon. LOL.
I mean.... I know I need to eat loads of calories but jeez!! I don't know what's come over me and to be honest, I could carry on if I weren't concerned for my stomach's ability to suddenly have so much! Absolute fatty. Nom, nom, nom.
So I'm thinkinnn, lung functions would look dazzling at about 65% tomorrow. Yes perlease... Cummonn drugs, exercise and food work your magic.
I'll have news tomorrow on my escapage. Stay cool amigos xxx
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