After some information from someone who has had a transplant

[Rosie89]

Hi there

I’ve not posted for a while

My mum is still poorly with an unknown cause to her liver disease

(Docs think it’s to do with autoimmune disease but not exactly sure what caused it)

So she’s been tried on steroids, Tocilizumab and something else (can’t remember)

But nothing has worked

She’s been to Birmingham last year to be assessed for transplant but they wanted to try the Tocilizumab and other stuff first

She’s off to Birmingham again in 2 weeks for outpatient appointment - the local hospital has given up and said they dunno what else to do.

But she is very bad, she’s only 51, has a hernia (belly button) ascites, weighs 47kg, and has very bad back pain currently. A bit confused. Not very talkative. She’s currently in hospital with suspected peritonitis in her stomach. But she hasn’t improved in herself like she always has when she’s having a bit of a bad time but they said that’s gone now...

So was just wondering how UNWELL were you when you had a transplant??

Would they send her home and not see her?

Any other info?

Thanks so much

[LAJ123]

Hello Rosie89,

I hope that I might give you something positive to consider.

Aged 61, I saw my GP about my expanding stomach, he quickly realised this to be ascites. I saw a consultant two weeks later and was diagnosed with cirrhosis of the liver.

For a few months I was fine. Then I collapsed with severe pain and confusion, I was unable to stand up or make much sense when talking. An ambulance was called and I was admitted with spontaneous bacterial peritonitis which had developed into sepsis. This is where the ascites becomes infected for no apparent reason and if left untreated can become very serious indeed.

In the following year, I spent a total of 80 days in hospital, mainly with the confusion from hepatic encephalopathy, which is the liver failing to control the blood levels of ammonia. The circulating ammonia crosses the blood brain barrier and causes a temporary brain disorder. Very few have any lasting damage.

However, once the right treatment was in place, I improved enough to be assessed and then listed for a transplant.

Two years ago (10th March 2016) I had a very successful transplant, got married, won a medal at the British Transplant Games and live a full and active life.

Hope this helps.

Take care,

Jim

[Hidden]

Hi Rosie, I'm sorry to hear about your poor Mother's condition. First some good news. Please be re-assured that your mother is in good hands in being referred to the QE in Birmingham. They will no doubt get to the bottom as to the cause of your mothers liver condition. They will most likely start be ruling out what it's not. So, if it's not alcohol they'll look for other causes. My transplant was carried out by Mr Perrerra and the team and this transplant both saved and changed my life.

I'm not sure if your aware, but the QE have a system called "myhealth" this is a facility which allows you to see blood test results, correspondence to and from your GP etc. Once it's set up, you can just login online from home and check things out for yourself. It's been invaluable to me, as I can monitor my own progress.

Please kindly let us know how she gets on in two weeks time.

Kind Regards

Richard

[LAJ123 in reply to Hidden]

Would be good if 'myhealth' was available at all centres. My understand is that its funded by the 'Friends of QE' charity.

Jim

[Kristian in reply to LAJ123]

I fully agree. Whilst referred to the renal team at Salford i was enrolled on to a similar system called patient view. However, this was only available to limited groups of patients, i.e. those with kidney disease and also, i think in some centres, crohns and colitis. But it was patchy. It certainly wasn't generally available to everyone.

I found having access like that to most of my results really useful and should really be more widely available. Since being referred to the QE I now have access to the myhealth system too.

[Michiganpbc]

Did they check for PBC? Its a autoimmune disease of the liver.

[Rosie89]

Thanks for your replies and all the advice. Much appreciated

They’ve done tests and tests and can’t come to an exact decision what it is that has caused it

She has been discharged from hospital today as they said they aren’t doing anything and have tried to get her comfortable with pain relief but have given up on that too as they’ve tried different methods. They’ve said to get her strong enough for her outpatient appointment on the 12th. Which I kinda see QE sending her away. She’s been there before (end of 2016) and had some of the transplant tests. But they said they wanted to try other medications first which they have and have not been successful so they’ve now said that the transplant is her last option. Just can’t see her being strong enough for it.

[MWCA]

Hi unfortunately they wont consider transplant if you have peritinitis. You have to be free of that dreaded infection. Whats the underlying cause of the peritonitis? My nieces is caused by an Ecoli bug, that's what they need to dort out to stop the peritonitis reoccurring