Just found out I need a liver transplant in two years. Non drinker, liver disease undiagnosed for 20 years but it looks like its finally packing up. Does anyone live in the Cardiff / South Wales area who may have been through this process so I can get a handle on what I've got coming my way. Only found out last week when seeing the consultant after a stomach bleed which came out of no where. Thanks,
Chris
Hi Chris, obviously Wales doesn't have a liver transplant unit so you would need to be referred to one of the transplant centres in England (if that's not already happened!).
That unit might take over your care from that first referral or do it alongside your local specialist. When the time is right they will put you in for formal transplant assessment - how this is done varies from hospital to hospital - some do all the tests in one week when you are an inpatient others do tests locally then have you in for odd day sessions/information session etc. That will depend on which hospital you go to.
Transplant assessment looks at your underlying liver condition and examine whether that means you are actually poorly enough to be requiring transplant & you have no contraindications PLUS it looks at your overall health to make sure you are actually fit enough to undergo the transplant operation - they assess your heart, lungs, do scans to look for & rule out any other issues (things like cancer other than in the liver), there is usually social work input and input from dieticians. At the end of all the tests (& discussion inputs) a multi-disciplinary team gets together to look at your case and decide if yes you are a suitable patient for transplant listing and then you would be added to the transplant list.
How long the wait is depends on a few factors - availability of donor organs to suit your blood group, body size, type of organ you can receive plus your level of need - the transplant list is now national so the organ can come from anywhere in Britain (and sometimes Europe) and will ALWAYS be offered to the most poorly patient who matches the organ.
Different transplant centres have different ways they expect you to get to hospital when the call comes and that would all be discussed at transplant assessment and when you are listed.
Even before being added to the list and certainly when on it you need to keep yourself as healthy as possible, keeping your weight good, exercising to maintain heart and lung health and generally keeping as well as you can so you have the best chance of successful operation and recovery.
My hubby was assessed and listed in Scotland and spent 10 months on the list before improving sufficiently to no longer meet the criteria for transplant and we are now a further 7 years on since he was delisted in 2015 and he's doing amazingly well - all things considered.
The BLT has information on transplant at:- britishlivertrust.org.uk/in...
Hopefully, all goes smoothly for you - obviously this has all been pretty generic information, I am not sure whether we have many members from Wales who have gone through the transplant process but hopefully if we have they will pop up soon to share their personal wisdom.
Best wishes, Katie
Hi Chrisjohnsy
The British Liver Trust run a number of virtual online groups. This includes a pre and post transplant group and a Wales general group. If you are interested register here and we'll be in touch. britishlivertrust.org.uk/vi...
My niece is from South Wales, her transplants were done in Birmingham Queen Elizabeth Hospital. The first one was an emergency as she had 48 hours to live, the second one was 8 years later, with that one she was on a transplant list for approx 4 months, she had her liver on Christmas Eve, had a call, picked up her bag, petrol, then the long drive to Birmingham, they were waiting to get her prept for the transplant, a long wait but worth it, the best christmas present anyone could wish for
hi Chris, so sorry about your news. And hope you get to have a transplant soon.
could I ask how you found out about the stomach bleed, did you have any blood passed from bowel. As i passed a really big blood clot and blood from bowel for 3 days just had a colonoscopy and that was thankfully clear, but it has to have came from somewhere so just looking for any help
Hi I'm much better thanks...no cirrhosis.... amazing recovery. I had a stomach that came on quickly....I became very ill.... bringing up blood ....very confused... eventually unconscious..... blood that come out of my backside was very black. ..hope that helps
Thank you very much for your reply, so glad you are feeling much better and it was not cirrhosis. Mine came on suddenly pain the whst felt like diarrhoea with so much pain then came the blood then clot. I vomited but can’t even remember what it was like as I was sweating cold sweats and shaky had to lie down.
I’m trying to find out where the blood has come from if my bowel is clear as it wasn’t normal it was enough to make me go to A & e who were just hopeless on a Saturday afternoon as no one there to deal with such a thing only broken bones and chest pain
I would get a blood test done to see where your Haemoglobin is at. Your Haemoglobin will be low ( under 10 ) if you are bleeding somewhere. Can you see your GP?
hi I had my bloods done week after it happened and
haemoglobin estimation was abnormal at
105 range 120-160,
red blood count 3.6 range 4.1-5.10,
white blood count 3.9 range 4.0-11,
But platelet count was normal
Have your bloods done again to see if your Haemoglobin is rising or falling but you've obviously had some kind of unexplained bleed. I think you should see the GP
no not had them done since bug I am going to get in touch with my Gp as can’t rest not knowing what’s wrong it surely can’t be nothing can it, was So scary
It's obviously an unexplained bleed. Might just be a one off but unlikely. Did you have a bug when it happened and if so what kind of bug?
no Chris no bug or nothing other than my ongoing stomach pain and one day blood loss which started in October, this time it came on very suddenly unexpectedly so just haven’t a clue
Stomach pain? Since October? What on earth is that then. I think get to see the GP surely?
I no spoke to Gp today who was lovely and said the collecteroll team should really refer me on for further investigations with colonoscopy being clear but she is referring me for a gastrophy scope just in case they don’t so I’m relieved now
Good, great! I have an endoscopy every 3 months...check up....and colonoscopy every 6 months to ensure I have no more bleeds. Can you pay to speed up treatment?
Im going through doctor now to get one. Do you get a laparoscopy throat scope as well as a colonoscopy?
Yes an endoscopy checks you stomach and upper bowel while a colonoscopy checks your lower bowel. I have an endoscopy every 3/4 months to check for bleeding
yes a gastrophy endoscope for upper areas, camera down throat, Iv had a few before, so just waiting for that now
jeez 3:4 a year that’s a lot for you to go through but suppose essential isn’t it
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