Transplant and tirednness

[Loungingsofa]

Hi, I had my transplant in Feb. and up until about a month ago I thought that I was making very good progress, but now that I've been taken off steroids I'm feeling a lot less energetic and tired. I used to be able to do about 3000 steps on a walk a day but now I'm down to about 1500. When I've had my walk I have to have a lie down because I feel so exhausted.I discussed this with my consultant last week in Birmingham but he didn't seem to think that there was anything wrong. Does anybody else have the same problems with tiredness and exhaustian. Comments would be most appreciated

[Hidden]

Good afternoon,

It is wonderful that you have had your transplant. Please do not be surprised or alarmed at your feeling of fatigue. The steroids give you an artifical feeling of energy and wellbeing, when they are stopped you can sometimes come back down to earth with a bit of a bump.

Take it slow and easy, you have had one of the biggest operations it is possible to have and the physical and emotional effects are enormous.

I have no doubt that you will get lots of supportive comments on this forum from others who have had transplants.

regards

[Yellowsydney]

Hi, had my transplant 3 years ago yes I feel permanently exhausted and tierd, I can do about 20/30 minutes of activity(housework mostly) before having to rest. Could just about make it round Tesco before lockdown, my 83 year old mum can out walk me. Just learnt to take it steady and rest when my body says no more.

congratulations on your transplant and good luck

Hilary

[Hidden in reply to Yellowsydney]

Hi

I had my transplant 2 years ago

Yes your energy goes down for a while

Mine Did but I have slowly built it back up

Your body has had some hassle of late and loosing the steroids is a big change

I am still not as fit as I was before, but that was 10 years ago so I could just be getting older 🤔

Great you are doing well

Keep it up

David

[PeterP54]

Hi. Had my transplant in 2006. I remember when I was first allowed out of bed at the hospital, I was exhausted walking to the end of the ward (20 yards?). Went back to work at my deskjob after 4 months but still felt a bit weak and my brain wasn't working at the speed it was before the op. Until lockdown I was averaging over 7K steps a day without any problems and 20K steps on occasion.

As others have said the steroids can give you that "boost" and in my case they were withdrawn gradually over a couple of months. I'm sure you will start feeling more energetic again soon.

[Bgc58]

Hi, I had transplant Dec 2018 and like you had a massive down to earth bump when coming off the steroids. I’ve put previous posts on here about how I felt then but now I’m walking 18 holes of golf , I feel tired and exhausted while playing but I’m sure it will become easier. I’ve been doing yoga type stretching and if you are up to it tone up as you you have lost a lot of muscle. Keep an eye on your Feratin / iron levels as mine went down to 10. I then had 2 big infusion over 4 weeks. After about 2 weeks I didn’t feel as tired and now it is much better. Levels are up and it was life changing for me.