Transplant waiting list

[Paulinekp]

Transplant waiting list

My husband has been on the list for 74 day's not that he's counting. He suffers with HE and at the minute he is weak and can't do things he would like to do, as a few of you say he has his phone by him all the time won't go places incase he gets that call. He is under the QE Birmingham

[AyrshireK]

If at all possible he still needs to do some exercise - even if its a short walk around the block each day. He needs to keep his heart and lungs healthy - remember cirrhosis often leads to muscle wastage and what is the heart but an organ made of muscle which needs to remain fully fit in order for t/p to go ahead.

My hubby was on the list for 10 months during which time we kept him fairly fit and active - doing activity when he felt able. We were packed and ready to go with all plans put in place and even had our caravan sited near Edinburgh so I had somewhere to stay when the call came.

However, by maintaining an appropriate diet to keep fuelled and prevent further muscle wastage, doing some exercise daily together with the death of his spleen following an aneurysm operation his liver gradually stabilised sufficiently to allow him to be delisted. 3 years further down the line still stable and compensated. Far from 100% well but hanging in there, back at the watch and wait, monitoring stage.

Fingers crossed your hubbies call does come fairly soon if his symptoms seem to be worsening. Depending on the gap between his clinic appointments make sure t/p team know of any signs of deterioration so they can perhaps get him in sooner to upgrade his level of priority.

Best wishes, Katie xx

[Paulinekp in reply to AyrshireK]

Thank you for your reply I have been doing short walks with him the last few days hoping it will help, He has to take protien drinks 3 times a day due to muscle wastage, Glad your hubby is doing well

Best wishes

Pauline x

[Isabelle2]

Hi Pauline

Just as the others have said, try to keep him as active as possible. Keep giving him loads of healthy protein rich food and try to get him to relax a little.

I am so sorry he’s finding the wait difficult. All I know is that the transplant changed my life, and I dare say, me for the better.

I hope he gets the call soon

Isabelle xx

[Paulinekp in reply to Isabelle2]

Will do thank you, hope you are doing ok now x

[Isabelle2 in reply to Paulinekp]

Honestly? Never better!

[Barnetaccounts]

Hi Pauline, You have brought back memories of my time on the list. He can safely travel as long as he remains within about 3 hours of the transplant centre. Excersise is vital but so is trying to live a normal life. As long as he has his phone with him, he should be ok. Avoid becoming a prisoner. I was so blasé that I didn’t even have a bag to take. I worked on the theory that I was going to be in ICU for at least a day, I would go in and the bag could follow. I was under the Royal Free, and during my never ending wait spent a week in Somerset, 5 days in The Cotswolds. I cleared everything with the transplant team before I went and was told both times, we can get you back from there no problem. When it eventually came, a day in ICU became 12 days in a coma, and I’m still not sure when my bag eventually appeared.

Ray

[Paulinekp in reply to Barnetaccounts]

Thank you for the advice, hope you are doing ok now .We have bags all packed and ready to go lol x