After spending 2 weeks in hospital and going through transplant assessment I managed to fail the final test which was the bike test. Basically legs have become weak sitting in hospital and full of fluid.
I’ve been given 4 weeks to turn this around which I will do everything I can but with my legs like they are was wondering if anyone else had this problem or suggestions to improve. Apparently on paper all my other tests are absolutely fine.
Frustrating thing for me is I used to do 5 miles a day on my exercise bike until January.
Thanks
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Carterc1
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Hi, I was pointed towards climbing stairs also to help breathing. At first could only do four with out stopping and before transplant could manage many more before I would stop and that was just in a few weeks but every day no matter how bad I felt. Also walked as much as I could with many stops and at times ring someone to pick me up. Wish you all the best.
I can sympathise as I failed 4 times! I’m still trying and need to raise my anaerobic threshold but muscle wastage in legs doesn’t help.
You need to up your protein and carb input and train harder. I did improve my AT but a hospital stay meant I lost it again.
Only walking about 300 metres at moment due to muscle fatigue not breathing problems
Hi. Start with walking daily and increase the distance when you feel ready. Add light handweights too the extra weight will make your legs work harder. Yoga classes are great for strengthening and flexibility and even swimming works as your leg movements resist the water. When you are at home wear ankle weights, you will really feel it working going up and down stairs !
Hi Craig, walking is a really good idea to start and when you can do the steps. Repetition is going to be the key as you are unlikely to be able to do a large number of stairs all at once. I suspect getting up 1 flight of stairs is going to be difficult. I know it was for me. I can though categorically state it is really good for cardio exercise. See what you can do and just keep repeating it, gradually extending it over time.
Thanks for all your responses there is great advice as usual and it’s really appreciated. I will also build up on my exercise bike again! I’m always fine with stairs at home but if I had a few flights of stairs I would struggle.
If only they would discharge me now so that I can really work hard at it as I’m determined to pass the test.
I don't know how long you will be in the hospital or what their rules are, but even walking up and down the hall near your room, if allowed, would be a start. Even standing in your room and walking in place with something to hold on to , to prevent a possible fall, might be that small step to gaining strength. My husband has issues with fluid in his legs and I suggest that while he sits he might put his legs up - even on a little stool we have under the table [we sit here a lot on the 'puter]. I do that since I have some issues with fluid too and it helps as does, for me, rocking my foot at the ankle. The rocking seems to help a bit at least getting the fluid moving. Any way, for myself, I try to bounce on my feet when I'm standing - making a cup of tea or getting supper.
Luckily they discharged me late last night so I can start making progress from today! Great advice about walking the hall near the hospital room I did this quite a lot in the last couple of days and it does help although a little boring after a while. I also use a footstool at home which helps but find if I use it for too long I can get leg cramps.
Hope you and your husband are doing well
Craig
Could you say that to them.... that you want to start working on it immediately and if it would be possible to use any gym equipment they may have at the hospital ?
I was discharged late last night so luckily I can start from today. The physio came to see me in Leeds but just said that she was happy with me as she had seen me walking up and down the corridors.
Hi I had physio at home and brought some light weights. I could only do 4 stairs (can do 12 now.) walking has been my best friend! I started with a Zimmer, then a walker, then 2 hiking poles, now I can walk unaided. You have to make yourself do little and often then build up as your tolerance improves. It’s hard work to begin with but you have an amazing goal to keep you motivated! Good luck.
Keep up your high protein and carbs diet and minimise your salt (to help shift that fluid!! Are you on spironolactone? If not ask your doctor.
Sounds like you have done great from where you started! Well done.
I’m on different protein supplements from the hospital and make sure I eat plenty of chicken, fish etc too, the hardest part is fitting in all the food as I’ve beeb asked to double my normal calorie intake.
I was on water tablets but they took me off them due to sodium levels being extremely low and bad cramps. They are reviewing this again to maybe take a low dose from next week which will help.
I know it’s hard but little and often and never forget the pre bed snack (l have the new high protein riveta with butter, lovely) don’t worry too much, I ate by the clock as I didn’t ever get hungry ! Good luck x
I think eating by the clock is the best way. I struggle abit with the late night snack and can’t have a lot of things that are suggested as I’m dairy intolerant so I’m on a protein juice drink. The ryvita sound worth a try rhough but without butter! Thanks!
I had part of my assessment in York and part in Leeds. I believe the assessment can vary slightly by person and by hospital but the things I had were, chest x Ray, ecg, Mri scan, respiratory test and bike test and lots of blood tests. All very quick procedures but the thing which took the most time was waiting for the various consultants to see you, surgeon, anethetist, liver specialist nurse, dietician and social worker.
Sorry Carterc1 re-read your post. Yes I’ve been in hospital with fluid build up which I had forced diuretics to relieve this helped tremendously. I couldn’t lift my legs they were so heavy ! But I do walk and even when I’m in hospital I walk 3miles around the corridors lol. I use the STEPZ app on my phone to measure steps distance etc.
I was on diuretics and they definitely helped my legs but not my abdomen but then I ended up in hospital for a week as the diuretics made my sodium levels dangerously low and was getting really bad cramps and muscle spasms. I’ve started my exercise program but my breathing is all over the place due to the fluid on my lungs.
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