Pre hab

[Fastkat]

Anybody been involved in pre hab where you are supervised to improve fitness prior to transplant to make your recovery quicker and safer?

[vulnerable]

No but I do know fitness is very important. Are you on the Transplant list? I’m being prepared for hopefully going on the Transplant list.

My question is - if you have been ill with Liver disease and really unwell, does it follow that when you have a transplant do you feel normal again?

[Litimag in reply to vulnerable]

I was at deaths door in May, transplanted in June and have felt pretty much normal since October/November. Not everyone has the same experience, but for me it has been like magic so far. Didn't have any fitness regime beforehand, was too unwell to be fair.

[Fastkat in reply to Litimag]

I’m unwell with a UKELD score of 64 and I might look ok but I find it very hard to exercise due to fatigue.

If I am to have any chance of a tx I need to replace some muscle mass and improve aerobically.

I live in hope and do some exercise every day

I need to turn the no to a yes for tx

[vulnerable in reply to Fastkat]

I know. It’s a vicious circle. Want to exercise but feel unwell. It is difficult. Ask for GP referral to local gym where they have trained Personal fitness trainers available, you should get it free as you need it for Rehabilitation good luck

[LAJ123 in reply to Fastkat]

Hello Fastkat,

Just to add to everything already said.

A very important member of the transplant team is the dietician. Pre-transplant at every appointment you will also see the dietician who will assess your nutritional status which includes measurement of muscle mass.

I was prescribed high protein drinks and additives as well as an instruction to regularly exercise as much as possible. At one point they did consider nutrition via a naso- gastric tube. Luckily that wasn't necessary.

It must have worked because I had my transplant in March 2016.

Jim

[Fastkat in reply to LAJ123]

Hi Jim

That sounds like me 2016 with a total over 80 days in hospital with similar problems.

I did eventually start seeiing the dietician and added some muscle back and dropped some fat. I hope that’s going to continue to improve. I’ve recently doubled protein input into same quantity of milk!

[vulnerable in reply to Litimag]

Thankyou so good to hear your success story keep well xx

[LAJ123 in reply to vulnerable]

Hi Vulnerable,

In answer to your question;

Nobody can guarantee the outcome of a transplant and no transplant team would make any promises.

However, those who I have known personally have returned to their old selves following surgery.

My story is pretty similar to that of Litmag.

I was extremely ill pre transplant and my relatives are telling me that they honestly didn't expect me to survive. During 2015 I was hospitalised for 80 days, mostly in 10 - 12 day episodes. I survived multiple hepatic encephalopathy episodes and a near fatal spontaneous bacterial peritonitis that became sepsis.

In my case I actually feel fitter than before I was noticeably ill. The profile picture above was 14 moths post transplant getting a medal (table tennis) at the British Transplant Games last summer in Scotland.

Jim

[vulnerable in reply to LAJ123]

Thankyou again Jim I’m aware there are no guarantees but I Just wondered if Transplant successful would one return to ‘old self’. It’s been very encouraging chatting to you😁

[Hidden in reply to vulnerable]

I don't think anyone quite goes back to their old self after transplant. I'd say I'm at 70-80% one year on. Do I feel great considering such a big operation? Absolutely! Do I feel the best a 33 year old could? Not really.

Anyway, regardless of how successful the procedure is, chances are you'll feel much better than you ever could without it.

[vulnerable in reply to Hidden]

Thankyou x

[Hidden]

The whole liver transplant experience is a long and important process. In order to get on to the waiting list in the first place, the team need to make sure that your going to be fit enough to survive the operation. No-one want's a patient to not survive the procedure. The transplant can on average take between 8-6 hours, but these times are coming down. Take for example the bowel, Here, someone has to hold the bowel out of the way so that surgeon can work on the liver. During this time the bowel often goes into shock or sleep and closes down. This is why after a persons had a transplant, the surgeon when doing their rounds will always want to know if the bowels have opened yet. When I had my transplant, it took three days for my bowels to open. I felt so proud when they final did, I wanted to just celebrate and announce it to the whole world, "Hey, guess what, I've just had my first ....".

Even a persons mental attitude has to be considered. Once again the assessment team need to know that you are mentally stable. It would be a waste of time if someone was to have a transplant, and then six months later go on to take their own life. The whole transplant process is a very emotional journey. You will spend the rest of your life knowing that someone had to die in order for you to live. Each day when you get dressed or take a shower, seeing the operational scare is a reminder of that donors sacrifice. Liverversary as many now call it are also emotional days. You will spend the rest of your life in total respect and ore of those wonderful donors, surgical staff and nurses.

[vulnerable in reply to Hidden]

Thankyou Richard I really appreciate your comments. Wishing you continued good health