Realistically - What are the chances of getting a liver transplant in the UK?

[ToHope]

Hi All,

I drank 80 to 100 units a week for 10 years (a very bad time kicked it all off). I havent been diagnosed - but I have cirrhosis.

Symptoms include palmar erythema, spider veins around neckline, extreme fatigue, getting "fatter" around my abdomen and look pregnant (probably ascites), slight jaundice in eyes, flaking skin, stinking bed.

Very very slowly, all these things are getting worse.

I stopped drinking totally 3 years ago - will never drink again and infact I enjoy being sober and on coke in the pub with my mates.

Im 44.

A read so often here that doctors are not helpful to people like myself, personally, mine may be helpful but weve had a few mix ups in the past with missed appointments for results, and me not stopping drinking when I was told to 6 years ago (for something else - a slight pain on other side than liver). I didnt realise the doctor meant forever - doc said "I think you should cut down, actually no, I think you should stop" and that was it - I was even told the doctor wasnt worried about my liver at the time. So I stopped for 6 weeks to see if the pain on my left side would go, it didnt, and I gradually started drinking again - and this went on for another 3 years.

So that was 6 years ago, saw doc about something else, carried on drinking for 3 yrs, then stopped and have been stopped for the last 3.

I know I will need a transplant - I have done my studies and my condition is worsening - slowly.

I just feel that I am going to be fobbed off as another alcoholic, despite my stopping, and will never get a transplant. Even if I made eval, I could fail on medical grounds (which I know nothing of at this point such as heart or breathing trouble).

I sense my best bet is to stretch out my remaining time as long as possible by myself, and avoid the doctors. At the same time, they may save my life.

Its all a mess, what can I do?

[Bolly]

Hi ToHope and welcome. I don't have personal experience of the transplant assessment process but from what I understand from others who do, its quite a complex and lengthy process. Firstly, as you probably have guessed, it will be your medics who decide whether to put you forward for assessment. Then I believe you have to go as an inpatient to a transplant centre for about a week. You have a top to toe medical; - heart, lung, kidney etc assessment. Apparently it includes about 30ish different types of tests. I think its to see if you're fit enough to have the transplant while being ill enough to have the transplant :? Fit enough: your body can cope with it - also to make sure your heart etc is ticking alright - ill enough: your liver is damaged above a certain point which qualifies you for a transplant...

I think there is also a psych assessment to see if you are mentally going to be able to cope, and a family day to get the family on board. A transplant patient needs a family network for support, they don't give them to someone living on their own.

After that I guess you go on the list and wait. For someone else to die and for the liver to be a match I guess.

I think there are twice as many people on the waiting list as livers.

Quite a lottery, but perhaps less of a lottery than the real lottery?

In 2010 there were 371 people waiting on the list for an available liver. Don't think the figures for 2011 or 2012 are available yet.

[gamesmaker in reply to Bolly]

Hi Bolly. Thanks for all that information. Really interesting. My hepatologist has told me that I will not be able ot have a transplant even if I need one as I am an insulin dependent diabetic (that is linked to my liver condition - NASH) - but the diabetes is very well controlled. (I have never drunk alcohol so my cirrhosis is not related to anything I can alter). Apparently the various cardiovascular risks from the diabetes make me a 'bad risk' for survival. I do not intend to just drop off the radar over this - but at present I do not need a transplant so I will keep asking when and if the time for needing a transplant occurs.

[tommyc in reply to gamesmaker]

Type 1 Diabetics are excluded from Liver Transplantation, is this true????

[AyrshireK in reply to tommyc]

I don't think this is necessarily true, all aspects of your health are considered at transplant assessment to see if your liver is poorly enough to warrant transplant and fit enough to endure the procedure and the lenghty post operative recovery period. This thread is 4 years old and some of the content might be out of date. Diabetes of either type 1 or 2 are not listed as being contraindicatory to transplant though your diabetes will be looked closely at because there are implications with the steroids post transplant and many patients develop steriod induced diabetes so it could make pre-existing diabetes a more serious condition.

If you are being considered for transplant this would all be looked into and closely evaluated at transplant assessment.

All the best, Katie

[tommyc in reply to AyrshireK]

Thanks, I've never been informed my Type 1 would ever have any negative impact of being a suitable candidate for transplant whilst I know poor health can, cheers for the response.

[AyrshireK in reply to tommyc]

Diabetes with complications can be a 'relative contraindication' BUT as I said it would be properly assessed and monitored during T/P assessment. Certainly not a total bar to T/P.

[tommyc in reply to AyrshireK]

Am i right in recalling your partner is the one with the Liver condition?

[AyrshireK in reply to tommyc]

Yes that's right, my hubby has cirrhosis due to AIH. Went through T/P assessment at Edinburgh, listed then delisted after 10 months due to an improvement in bloods.

[dawks]

I have been advised that you can be considered for a liver transplant after 6 months of no alcohol..i stopped drinking on 1st January 2013 and have started to have some of the tests for the transplant and have other tests booked in.. If these are ok i will then be recommended to go on the waiting list.. I was also told that each person case is looked at and people that live alone have had a transplant but you do have to have friends, family support no matter if you are married or single.

[ToHope]

How are you being looked upon? I feel I will be looked upon like a dirty insect - when infact I am just a family man with two kids, own business, mortgage - usual run of the mill average type of person who had a hard time a decade ago.

[Hidden]

Hi ToHope,

You have done the hard thing and stopped the drink totally. I would get an appointment at the docs and get properly assessed. Until you do that, nothing can happen. I would reckon they should get you through to a specialist as a matter of urgency.

The docs should treat you with the same respect that any patient gets whatever the circumstances so that shouldn't be an issue.

Good luck and keep posting with progress.

[jessica29792]

I would go and see your doctor ASAP. Please don't feel like people will judge you for it. It is a doctors job not to judge. You have been completely sober for 3 years now so there should be no reason for them to refuse a transplant if you needed it. You still have a lot to live for and worrying about seeing a doctor about such issues could make it worse. I am sure your family would also want you to see a doctor about this. If you are eligible for a transplant it will significantly improve your quality of life but be weary that you will need to take medication every day afterwards to prevent your body from refusing your new liver. I hope this is a help and I hope everything goes OK for you!

[Hidden]

I think you should see a doctor as soon as possible and begin the process of proper evaluation of your condition. Among the disadvantages of sites like this is the capacity to get inaccurate information as well as helpful guidance and some of the responses to your question are wrong.

On the basis of what you have said, you can expect to get a referral to a hepatologist who will send you for scans and blood tests to explore the extent of the damage to your liver. Only at that point will they begin to explore options - and these will include transplant if you meet criteria. Having abused alcohol in the past will not exclude you from consideration. My case illustrates this. I had a transplant in 2011 after a diagnosis of liver cancer only 4 months after I stopped drinking. I was relatively symptom free but had a tumour and cirrhosis and I was 63.

Someone of your age and 3 years dry will not be judged negatively by the doctors. My experience of the specialists was that they were invariably helpful, professional and caring and gave honest information at all times. Yes, they are working within constraints: not everyone gets on the transplant list and not everyone on the list gets a transplant but you won't get one if you don't get a referral.

Mike

[Ph1ldad in reply to Hidden]

Hi Mike your post gives me hope. I had HVC 17 years ago and the liver is now quite cirrhosed and getting worse. I figured that having the most common blood type and being an ancient 61 yo I would have no chance of a transplant. Thanks for that

[Kmoonjax in reply to Ph1ldad]

I had a liver transplant last November at the age of 62. Had Hep C and cirrhosis first diagnosed in 1995. Went through 3 years of Interferon treatments that didn't get rid of the Hep C. Finally got Harvoni 3 years ago, which cleared the Hep C. Diagnosed with liver cancer last spring, and got Y-90 radiation treatment which didn't work. Put on transplant list in November and got transplant at Mayo Clinic Jacksonville FL after 4 days on list. First 3 months were brutal with CMV virus and staff infection, had to get feeding tube also. At 4 months am much better and improving every day. If you behave and hang in there, there is hope even if in your 60s.

[tommyc in reply to Hidden]

Hi Mike, am I right in saying your Liver Cancer was not alcohol related but secondary to Haemochromatosis?

[Hidden in reply to tommyc]

I had GH but used alcohol and this was regarded as a contributing factor.

Mike

[papataal]

Hello ToHope,

I have had a transplant about 4 years ago, caused by a number of things including Alcohol, The consultants were very clear that drinking had to stop period, no excuses, appointments had to be kept. Ii found the consultants to be very helpful and caring and yet at the same time "tough". They have to see that you mean to survive and they are not wasting a liver, I went thru he 1 week assessment which pretty much is designed to make sure you can survive the opertion which for me was a tough one nearly 13 hours.

I would take what they say serioulsy and also make sure that you are seen by a Heptologists and not a gastologist as has been the case with originally, the other group of peole was you are the program are the co-ordinators who will also be very helpful. The more questions you ask the better off you will be.

I hope for the best for you!

[olliedog]

Papataal.

I haven't drank for 2 years next month but I was lost in the stay after I moved house and I've had a nightmare getting it sorted.

I hope as I missed 2 apps due to not recieving letter and gp not following it up when I told them about it until 7 months later despite my nagging that I won't have to start again I couldn't deal with that my mood is really low right now, can't work, under appeal for esa even though it was paid for 18 months no questions asked but despite the obvious deterioration in my general health even though I take every care its ruined me I can't even afford to eat everyday since it was stopped plus I've to taxi from procedures costing loads cos I've had to scrap my car.

It's a struggle to survive day to day as a recovering alcoholic hopefully doing everything right without the added stress of money woes and now hopefully not worrying extra because I've to start at the bottom again

[Dan68]

Hi tohope,I to am 44 and have just had a transplant seven weeks ago due to hep c then cirrhosis then cancer, none of mine is alcohol related though its still the same process.

First thing is getting referred to your heptologist at local hospital where you are assessed and have biopsy etc. after a while I was referred to QEH Birmingham which are specialists in liver treatment , I saw someone every 2weeks and was then assessed for going on transplant waiting list. They don't discriminate as long as you are sensible and not drinking or taking drugs while asking for a transplant. I then went on a family and carer lessons to be taught how he process of operation and recovery work. I then was admitted as an inpatient for assessment of transplant,I had ECG,SCANS,LUNGS CHECKED,BLOOD GROUP etc, I was told I was moderate to high risk due to previously having spleen removed in accident and previous drug abuse and poor vein access. When an MRI later showed my cirrhosis had turned to cancer I was placed on priority list for my blood group and had transplant 10 days later. I'm married but if you live alone they transfer you to your local hospital after say ten days and you stay there until you can get about yourself and then a district nurse will come to you. I am on meds for the rest of my life but at least I am alive I was told my liver was just about finished when they took it out so get things looked at ASAP. Most cases of cirrhosis cause end stage liver disease which very often results in liver cancer, my cancer was only in the liver so once it was removed it had gone. Also there are app 400 people on the liver transplant list of which 20% will die while waiting on the list. These figures were in monthly paper by NHS. Being in the most popular blood group as I am and you say you are isnt a bad thing as likelihood is you will have more livers available than a rare blood group.

Sorry it's so long a reply,anymore help req let me know.

[Pensylvania]

Hi ToHope. Well done for stopping! 3 years IS an acheivement and you should feel proud of yourself, god knows its Not easy to do.

Best of Luck.!

[dizzime]

Hi To hope. My story begins 2007 when feeling tired had bloods etc and drank 30 to 50 units per week. Also had liver scan. Got told liver scan ok and to stop/cut down drinking. So I though im ok. Nooo. 2011 went back to Drs still tired got bloods and told had Hep c and it had been showing from 2007?.also liver scan had shown mild cirrhosis too.By this time looked 8 months pregnant. Saw liver doctort at a different hospital and told to stop drinking immediatley which I did. Things went from bad to worse (another story) but got on liver transplant list 2013 and had liver transplant at St James August 2013. Stated to reject October but upt steroids and under control. Unfortunately steroids have caused me to have diabetes so now injecting Insulin 4 times a day. But hey I'm alive and kicking and started at a health club today and been swimming first time in 4 years and it was great. If only the first Dr in 2007 had bothered to see passed the booze things vould have been a lot different. So to St James thank you for treating me as a person not an alcoholic or a drug addict but me. (I wasnt either but it does not matter) it was nice not to be judged. So Tohope please see heptoligist and if they can they will help you. They saved my life. I am now 53 and staying positive, you keep positive it really works. Good luck x

[Brummi]

Hi , Your chances of a liver transplant are the same as everyone elses. Certain things are taken into consideration. Firstly the severity of the liver, then availbilty . The docs try to match size of your body , blood groups. As far as I know if you was a drinker does not come into it. I had a autoimmune disease and I was monitored for 2 yrs. I have a common blood group and was on the waiting list for only 8 days. The hardest thing to do is not worry, try to keep any stress at bay. Certain foods can help ( not cure ) high potassium foods like mushrooms and bananas are high in this. Also you can beat this I did and I bet you can. Message me if you need to chat. I had my transplant in June 2913 and I feel good.

[X19Dave]

Try canabis oil it is

[X19Dave]

My wife had alcohol related liver failier and she had two transplants she was at addenbrooks as far as i an concerned the best hospital in the world, they did not care it was alcohol related all they wanted to see was that she had stopped could stay off alcohol

They will not transplant someone who will go back to heavy alcohol use after transplant which i understand why should they waste thier time doing a transplant for someone who is going to kill the new one

your bloods should show up that you have not been drinking and you should get on the list the same as anyone else

Keep going to the doctors and asking about a transplant tell them you want to see a liver sepecalist

Dave