Transplant waiting list

[CricketBadger]

My father has stage 4 liver cirrhosis caused by alcohol and has been in and out of hospital a few times because of blood in stool or vomiting blood. He has stopped drinking completely as of 6 weeks ago, I would describe his drinking as more of a habit over a long period of time as opposed to needing alcohol to function.

Last time he was in hospital I asked the doctor if he would be eligible to go on the waiting list for a transplant but they said not until he has stopped drinking for a period of time.

I just wanted to understand if anyone has been through a similar journey that is now on the waiting list of what steps they carried out to get there as at the moment the doctors at the hospital and the gp are saying he is critical but saying there is nothing they can do but manage the symptoms and whenever we mention a transplant it doesn't even seem as an option.

We have a review with the hepatologist in Jan where I am hoping we get some more information but at the moment it is very difficult to play this waiting game when his symptoms get bad so would appreciate any advice for people that have been through a similar journey

[AyrshireK]

It used to be there was a stipulated 6 month (proven) period of abstinence requirement before a patient with alcohol related cirrhosis would even be considered for transplant assessment. This criterion changed a couple of years ago and the new guidance is detailed on this link :- bts.org.uk/wp-content/uploa... BUT there does still require total commitment to abstinence both now and in the future.

6 weeks IS a very short period of abstinence so far, is Dad undertaking any sort of alcohol support to help prove his commitment to future abstinence?

He'll need to get and stay as well as possible to have a successful transplant assessment too. He will need to be in as good a nutritional state and be exercising where he can to keep heart, lungs and other body functions as good as possible. Getting to transplant assessment is only the first stage, you then have to be deemed ill enough to need t/p but fit enough to wait and go through one.

Dad needs to stay well and sober until January and take it from there.

Katie

[CricketBadger in reply to AyrshireK]

Thanks a lot for the doc!

Yes I understand 6 weeks is a very short amount of time but we are just finding it a little frustrating that things haven't been explained well.

He hasn't opted for any help but I am quite confident he won't drink again, he seems to understand the seriousness and doesn't have any withdrawal symptoms or cravings.

Annoyingly, around a year ago he had some swelling in the stomach and the GP referred him to a hematologist, who reported findings of suspected cirrhosis and asked him to be referred to a hepatologist but for some reason the referral was never made and he carried on drinking for an extra year which I feel has caused a lot of damage. I don't think my parents understood the full extent of what cirrhosis was at the time and unfortunately I did not see the letter.

Yes I think we need to make sure he is in a good state for the January appointment but the setbacks are difficult as the vomiting blood really weakens him and reduces his appetite. Just need to stay on top of it.

Thanks a lot for your message and advice!

[Roy1955 in reply to CricketBadger]

Emphasis on he needs to prove his commitment to abstinence!He can't prove it by simply quiting on his own so he should engage in a recognised recovery program.

If he vomits blood or poops blood call an ambulance.

[Ubwa]

I was proven abstinent just shy of 6 months last year. I was also hospitalised most of that time to keep me ticking over as well as possible. Although there was also 2 years history between me and the doctors.

Convincing himself first and then others he Is fine with alcohol is a difficult step, then once over that you have to be well enough to pass the physical tests to see if you can take the surgery.

I would suggest your dad needs to be looked after in a hospital at least to try stabilise him

[Rshc]

My partner was listed due to ARLD - they began discussing it with him at around 5 months after he stopped drinking and was eventually listed around 7 months after. The thing is though that the liver can recover to a degree that it can function and become recompensated so this is what happened to my partner - he is now off the list as deemed to be too well. It can just take a bit of time.

If a transplant is needed though he will undergo a fairly in-depth assessment part of which will be an evaluation from a alcohol nurse and psychologist to ensure he is mentally ready and that is fully committed to a life without drink.

[Dogbot]

Hi CricketBadger it’s very important that you have informed your doctor about the vomiting especially when blood is involved, he may have varices that need some attention. This consists of an endoscopy and tying off varices I had many of these done it’s only a small procedure, uncomfortable but not painful. Although when my liver failed and the hospital doctor didn’t think I would make it through the night with a lot of hard work and medical intervention they kept me going for years without transplant but the last three years I had some really bad episodes and hospitalised a few times. I was nearly 20 years dry when I received my transplant, after passing the physical and mental examination, which consisted of the exercise bike and an interview with the mental health doctor to prove I was not going back onto alcohol. It was a long journey but worth it I’m looking forward to a reasonable healthy lifestyle and seeing my grandchildren, which one means I travel to the USA 👍. Good luck with your journey I hope it’s quicker than mine, which a lot are . Try to stay healthy, exercise and good diet. I wish you all the best from the wife and I 💕💕.

Stay safe All

Dogbot 🐶🌈Dave

[Robert1981 in reply to Dogbot]

Hi Dogbot, just reading your reply > in reference to bleeds, are you saying most were at the end of your 20 years between diagnosis and tp? That’s a staggering amount of time? Do you put your survival simply down to no alcohol, and the reason we don’t see other similar lengths is that few people have the ability to go fully tee total like yourself?

[Shep666]

hi

I understand Roy's point and am not saying that what he said is not a great way to proceed. But in no way do you HAVE to prove in some way by taking part in a program that you tick the boxes. It may help. They will random test for alcohol through out treatment and a hospital "mental/addiction" specialist will conduct regular assements of your fathers progress. His"habit" as you describe (if he is being brutal in his honesty) fits the pattern of many older people. Not everyone in that position wants/needs or responds well to some/all programs. The hospital will make a judgement call based on their experience of him during interviews/assessment. His commitant can be assessed in many ways - the most basic being no alcohol in his system - but mind state and awareness are big factors also.

Time wise - I was 3 months and they made a call on lines as above. TBH though as katie says the big factors are simple - will the benefits of a tp out weigh the risks and can he physically survive the massive OP and recovery period. Often as well as alcohol intake, a fitness and eating regime need to be in place and working in order to convince them of his ability to survive the actual "cure". They also need to be sure he has a good support network both pre and post TP.

Hope that makes sense 👍

[lonmallin50]

I HAD TO STOP DRINKING FOR 6 MONTHS BEFORE THEY SENT ME FOR THE ASSEMEMENT I HAD MY TP AT QE HOSPITAL AFTER 5 MONTHS ON WAITING LIST

[Shep666]

I was at QE - 3 months alcohol free on list, assement during that time and 11months to get a match and TP.

There is no set in stone limit other than do you benefit/can you survive the OP and recoovery.

Good luck to everyone that is on this journey 😍😍

[FlashyD]

I had my transplant last December. The initial cause was alcohol related cirrhosis and I stopped drinking, obviously too late. The abstinence helped me heal mentally and physically but then in a routine check up they found 2 tumours in my liver so after they were removed I was told that I had ESLD and that without a transplant I could die within a year or so. The assessment was tough. It brought up the reasons why I had become alcohol dependent and that was difficult to face. I stopped drinking without any medication, just will power so that meant I had to see alcohol teams to monitor my mind. That is definitely something to be aware of because you are still monitored all the time.

Definitely he needs to be as strong as possible health wise because believe me, he will need all his strength.

He has wonderful support there.

I hope all goes well and don't forget yourselves, support people, as it takes it toll on you as well. Best wishes 🙏💚