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British Liver Trust
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Don't want a Liver transplant... anyone got better and avoided it?

Hi all, I was diagnosed in Oct last year (2016) with decompensated Cirrhosis alcoholic liver disease with Hepatic Portal Vein Hypertension, and Grade 1 (low level) Varices. As soon as I was told how ill I was I did not drink alcohol any more, nor did I crave or miss it. My life is better without a fuddled head! I went on to experience some nasty effects mainly due to Ascites, including admission to hospital with acute pain due to weight gained in fluid with resultant severe squashing of my organs, constipation and also Spontaeneous Perintontis. My Liver function and allied tests have steadily improved and meds seem to take away Ascites and Odema which had made me bed bound for months with pain and inability to manage my daily life and body. I now feel a lot better apart from tackling bouts of fatigue and sleeplessness, some possible IBS type pain in lower ribs at times, but have been assessed as fit for transplant. I want to get better and not have to have a transplant, also feeling there are much people who need one more than I. Is there anyone out there who has avoided transplant after medics recommended one as likely? Any advice or tips on how to get better would be appreciated. I am due to see a Consultant tomorrow regarding whether I will be listed for transplant and so am anxious to hear some encouraging advice/outcomes from people in a similar position. Thanks.

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Sorry couchiebear if my experience isn't what you want to read but I had similar results and there really aren't any procedures apart from transplantation that will fix a liver with sclerosis, especially the fatigue and insomnia, but I'm not a professional, see what the consultant has to say. by the way, I have now been officially listed on the national database and am really excited at getting my life back. Best of luck and keep us posted

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Thanks for your reply. I ask about this as it appears there are those on this site with similar symptoms etc who are ok and not transplanted, many for years on end. I am kinda hoping I can function as I am presently.

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Good luck with the listing, I hope you do not have to wait too long to get your life back x

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All people's bodies cope differently. Many people who give up alcohol completely, do make a remarkable recovery and a poorly liver seems to cope well. For some it doesn't and for others it deteriorates over time.

You should be monitored by a gastro with scans and bloods done every year. They don't hand out livers willy nilly as there is a shortage of them. So if your liver is coping, they will just keep monitoring you. But when, as in your case, you are put forward for one, it is because they don't believe you're going to survive without one.

My thought process was very much like you, I am not near the TP list, but for the first time this year, my gastro hinted that at some time in the future, it may be a consideration, which was a bit of a shock as I thought I was ticking along fine. One point I would ask you to consider, is that a condition of getting a liver is to be fit enough to withstand the operation. If you put it off for a period of time and then when you felt you needed one, you were deemed not to be fit enough and were turned down, how you would feel.

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Thank you very much for your thoughts. I will take the consultants' advice. If this means listing for awaiting a transplant then I will agree to it.I hope you continue to be well.

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Hey couchiebear ha,Yeah I had decompensated liver due to my lifestyle,was told I had little time left if I didn't stop abusing my body i.e. drink and drugs.i had the usual symptoms like acites,oedema all over me plus H.E.

I had diuretics from 2013 to 2015 and fluid went.

I'm now hep c free and my LFTs are nearly back to normal.I still have Chirrosis and I don't drink or do drugs no more.Im 42 now and as long as I do all the right things like diet and exersice a tx is far away and I hope I'll never need one.Maybe as I get older πŸ€—

..

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Thanks for your reply. I am pleased you are doing ok and not needed transplant. I have had good news on this too... I am improving and do not need a transplant (I will continue to be monitored). Yipee!!

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What is H.E. sorry I'm just curious. I have spider angionomas popping up all over the place first, then noticed broken veins all over my face, then middle of last month my both my palms turned red all but the middle which my dermatologist called palmar erythema. I have also noticed all my veins are coming to the surface. I couldn't see them before but they are suddenly there. My CMP from 7/1 is normal. My ALT 12 and AST 14. My cat scan showed enlarged liver at 20cm which they said they thought was something called Riedel's lobe verses true hepatomegaly but the ct scan was done for another reason and unfortunately no contrast was used the radiologist noted it would be hard to detect pathology in solid organs without it and the liver is solid. I had an abdominal ultrasound done that said "diffuse increased echogenicity of the liver suggesting hepatocelluar disease likely caused by fatty liver". I am a bit freaked out. My GP acts like it's no big deal but surely all this stuff wouldn't be popping up on me for no reason. I called my insurance and got a number to see a liver specialist and luckily I don't need a referral. I go end of August. It seems so far off. I'm here with no idea of what is wrong with me. I have had weird symptoms since March. Attacks of lightheadness, joint pain, bone pain, memory problems. I can hardly speak properly anymore as I forget the words I mean to say and something else that makes no sense flys out of my mouth. I haven't drank in 7 years. I had a problem with alcohol in my 20s and it was bad. I'm 35 now. I am however on pain meds daily and ever since I got on them 5 years ago it took my appetite away so I rarely ate. I drank a lot of soda though not good at all and when I did eat, it was like 1 time per day not healthy. I have put myself on a diet and am walking for an hour every night. I'm worried. I have 3 kids one of which is only 3 years old. Maybe it's the anxiety of it all but I keep thinking I'm gonna die from whatever is going on with my liver. I feel very lost and alone. I keep thinking I have liver cancer.

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Good luck you have done well to give the drink and drugs up best of luck for the future x

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I would seriously consider your decision about transplant. If doctors are saying you need one then it would perhaps be best to accept the listing because if you say no now and then a few months down the line decide you want to take the chance of transplant (and a possible complete recovery) it is possible you'll be too ill to go through it and then your chance is gone.

We did have a poster & dear member of the forum who did that. Doctors were advising transplant some years ago and she decided she'd rather go the herbal, live life to the full route without transplant and then when she discovered that she had developed liver cancer she had waited too long and it was too late for transplant and sadly she lost her battle and we lost a dear friend and valued member of our community.

Think long and hard about the future and your place in it and make the correct decision for you.

Wishing you all the best, Katie xx

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Hi Ayrshire ha I'm from there too but live in Engand now.

My liver is compensated and is at stage 3 which is the outer scale so there's been no talk of it with my specialist nurse or consultant.

I think I remember it was your husband who was sick.Hope he's doing okay.

All the best..Scotty

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Best of lick Scott boy you have the willpower to carry on wishing you the very best take care

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Thanks for your advice Katie, yes am following Consultant's advice and have good news, do not need a transplant as am improving. Best wishes.

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Good news, hopefully they will continue to monitor you closely in case the need rearises. My hubby was assessed and listed for transplant in June 2014 - at the time he had no symptoms of decompensated liver and his blood results were only borderline but they did list him. 10 months later he was delisted as his blood results normalised and are always now normal although he still has some symptoms (fatigue and minor HE are his main ones together with some of those other issues which come along with cirrhosis). TP hospital continues to monitor him as they've said its probably not IF he'll need one in the future it's WHEN.

Live life to the full but continue to look after yourself and your liver.

All the best, Katie x

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Hi, I would think nobody wants a liver transplant in reality, as for me I did not want to die either. Take a serious look and think about it, I know which route I would go. My quality of life is so much better and I feel better for it. I hope you sort out your predicament for the best..... Good luck.

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Hi, how lovely to read you are thinking of others when you know you are unwell yourself and how super it is you have taken the right steps to get better.

The hospital spoke to my hubby about transplant (damage due to antibiotics) but it was too late after he caught pneumonia and needed more antibiotics, he died. Based on my experience, I would take their advice - if you need a transplant, you need one. If you recover beyond needing a transplant and it can happen, then they will tell you and that would be fabulous. Please think how terrible life would be for your family and friends if you by-passed the opportunity to be with them for longer. I would give anything to have my hubby with me now - he was only 50 when he died and we have a young family. Good luck

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Thank you Geoffy I am very sad for your loss of your wonderful husband. My heart goes out to you and your family and I am grateful for your time in taking to share your story with others. Luckily found out I am well enough to not now need listing for a transplant. Best wishes x

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Great news xo

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Hi thanks for all your replies I appreciate it.I hope none of you give up.No Surrender and keep on keepin on πŸ€—

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Hi,

I haven't reached transplant level yet but have been told it's a probability rather than possibility for me. In fact I had to choose my transplant centre as I fall between 2. I chose the QE out of loyalty - I was born there.

I immediately jumped on the transplant information on the website and I think the thing that will probably help you most should the time come to be listed is the level of councelling you can receive. This could be the game changer.

Please don't throw your life away if it becomes your reality, if you are called in for a transplant it means you are best suited to the organ available.

If someone was so generous as to donate an organ it seems only right to make the best of it.

However, you never know what miracles are around the corner. There could be a cure in the pipeline.

Rita x

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Just to add to the other replies.

I was told at my assessment 'without a transplant I will be dead in two years' and put on the UrgentTransplant list with a high UKELD score, like you I did not relish the idea of a transplant. Whatever you do, remember, SAY YES now as you can change your mind later, to say no at this point could be an end of help until its to late.

Now, two years on, I have moved house, had to change hospital and my UKELD score is 7 points lower, rather than the Transplant List I've been moved to the Watch & Wait List. My survival probability is very good and who knows, I may never need that transplant after all.

Please EAT SENSIBLY with proper food, take as much EXERCISE as you can and stay POSITIVE.

I am enjoying life (yes I get fatigue, memory loss, tiredness, difficulty with sleep, lethargy and other problems) but - THAT'S LIFE.

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I decided to not get a transplant. I had all the same symptoms as you. I started off getting drained every week, but now the Ascites seems to be gone. I also have blood clots. I was diagnosed last March and have definite improvement in quality of life. I know it's risky, but so is having a transplant. Also I will be 70 next month. My jaundice is gone for now. The combo of blood clots with the cirrhosis made me say no to the transplant. My doctors are sort of shocked at my decision, but I just can't handle extreme surgery like that. All the best to you!

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Hi there. Thanks for your reply. I now do not need a transplant, said my Consultant, as although not completely symptom-free, my Liver has been recovering. I thank my lucky stars and the team of Medics who have helped make this possible. I hope that I will never have to undergo transplant, and am happy that they made their decision matching my thoughts on the matter. We have to be true to ourselves - good on you, for saying what you wish and I hope that you continue to be okay.

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Hi

Shortly after I was diagnosed with cirrhosis, my hepatologist said we might need to consider the possibility of a transplant at some point. At the time I was still functioning well and at the back of my mind was thinking: What is he talking about? Fast forward 6 months later, cirrhosis changed to decompensated and by then it was a matter of when rather than if.

The transplant has made a huge difference to my quality of life, however if you don't feel it's absolutely necessary, you should avoid it. The immunosuppressants you have to take afterwards come with a host of other issues like increased risk of skin and other cancers, potential kidney damage, fatigue, etc.

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Thanks for this. Since writing, events have moved on, I am told I do not need a transplant, and my Consultant said, as you did, they are not without their complications and potential risks. I feel that I have had a lucky escape and hope that I continue to improve rather than deteriorate. Best wishes.

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