4 months post transplant and aching and breathless

[LuckyLady999]

Hi all. After 30 years of PBC, I finally had my transplant 4 months ago. It was a textbook operation and I was out of hospital in 10 days. Apart from the pain of the surgery, I felt fine. Now, 4 months on and I ache all over and I’m increadably breathless. I can’t get up the stairs without feeling like I’ve run a marathon. I have mild COPD, but chest X-rays and breathing tests show it isn’t any worse than before the op. I am on 75mg of Aza and 5mg of Adoport. Has anyone else suffered with aches( particularly neck ache) and/or breathlessness.

[Hidden]

Hi

Fatigue, breathlessness and aches are quite common. The body is extremely weak post transplant and it takes some time to recover. I take it you have stopped taking painkillers?

I was also aching in places until recently and still get breathless when I take the stairs to the second floor of my house although this has improved massively. I'm nearly 14 months post tx and have just about started gaining some of the old strength.

Don't worry, you'll be fine. Just need to give it time, a lot of time.

[LuckyLady999 in reply to Hidden]

Thanks for your reply. It’s comforting to know it’s not just me. Everyone keeps telling me to be patient, but I’ll need a prescription for that as I don’t have any lol

[LuckyLady999 in reply to Hidden]

Ps. I’ve stopped taking the Tramadol, but have to resort to Oramorph sometimes. Do you know what was making you breathless? Was it the meds, do you think?

[Hidden in reply to LuckyLady999]

I do think it was the meds as well as the body being still frail from the surgery. I was on oxycodone and like other opiates, it's very good at masking pain but useless at treating it so once you stop, it takes a while for all the aches and pains to go away. I think that had something to do with the fatigue too. Whenever I was on oxycodone, any physical activity was almost non existent which didn't help with recovery.

[LuckyLady999 in reply to Hidden]

How are you feeling now? All the replies seem to suggest I have a long way to go yet and 4 months is early days.

[Hidden in reply to LuckyLady999]

I feel great, better than I have since my cirrhosis changed to decompensated around 18 months ago.

[jojokarak]

Have they checked you for anaemia, it's just that I have been knackered and breathless for months and just been diagnosed with severe anaemia so I have an explanation now I am 15 months post transplant... And as above it could be just the normal route of recovery as it does take a long time but worth asking if they have checked you for it x

[LuckyLady999 in reply to jojokarak]

They did prescribe me with iron tablets first of all but I’ve finished them now. I have my check up on Wednesday so I’ll ask him if I’m ok now. I sort of hope I am anemic as it will explain why and it’s curable. Thanks for that.