Living with a new liver. Is it the answer?

[acjb007]

At some point I'm pretty sure I'll need a transplant. Part of me thinks I don't want to go down that road as I've heard it's a slow recovery process and even with a new liver you are still not back to full health. Am I being negative and what are people's views on here? Thanks

[Jahida]

I had a liver transplant just over 8 months ago very suddenly. I can say that living with constant sickness, nausea, tiredness and forgetfulness was not a life I wanted. I suffered with all the above for 2 months before I was diagnosed with a liver issue and all went down hill from there.

Do I feel back to normal? No definitely not. But I have no regrets about a transplant. It was totally worth it. I am here alive with my children and family. After the transplant when I felt like an invalid for a long time, I was angry. I kept saying I'd never want a transplant. I felt I will never walk or live again. I was in constant pain from surgery too. Now I do have pain slightly but I have so much energy. You will recover and you have to have that positive attitude too. If you do not walk towards getting recovered then you will feel down and your health will not get better.

Everyday I see my children or I when I see my friends and family, I am extremely thankful that I got to live to see it all.

You will too. Life is not completely horrible after transplant. It does become a new normal and you will gain back your independence.

Good luck!

[RodeoJoe]

How bad is your liver now? What are your symptoms?

I was diagnosed with cirrhosis in 1997 when I was 27, and I can only imagine I had had liver disease for many years before that. I originally went to the Dr's because I was feeling generally unwell, this feeling continued and some days were better than others. But the thing with long term liver disease is that you tend to compensate, so that after a while of feeling under the weather it becomes the new norm. After a few years I was feeling so tired and found concentration really hard, but again it became my new normal, and I worked for the next 15 years until about 4 months before transplant. By this time I was yellow, swollen with ascities (in places you wouldn't imagine), feeling nauseous, unable to think in a straight line, my libido was non-existent, and I had been on the down for years.

By the time transplant came it was the only option not only to survive but to have any sort of quality of life.

I was out of hospital and back home after 10 days, by which time I already felt better and could think better than I had done in years. It was only after the operation that I appreciated how ill I had been because the contrast in how I felt was so dramatic even after major surgery.

I was back to work after 6 months which could have easily been 3, but one thing a liver transplant does give you is a new perspective on life. And work certainly wasn't a priority.

Was it worth it? Even if my recovery period had been longer, of course it was, even if the alternative wasn't a slow painful death.

[liveronmymind]

How I wish it had even been an option! To be even a " candidate" for liver transplant sounded like an "honour" and a status that not everyone could achieve. It's when you have liver disease and no longer "qualify" for a transplant that is the main worry.

So yes! I do think you are being negative if you "don't want to go down that road" because of it being a slow recovery - because the alternative in many many cases is simply a slow death.......

I know The word 'transplant' itself sounds scary and gory and drastic but it's absolutely not It's a life saver and God Bless those who have donated their livers.

At the end of the day I would say if you have a chance or have been offered to go on the list go for it! I was reading an inspiring story yesterday here on British Liver Trust website about someone called 'Bob Whatmough' having had a transplant - go look him up and see for yourself!

If it's an OPTION Go for it!

[millymo]

If you are lucky enough to be put on the transplant list you really should go on it, there are plenty of people wishing they had the opportunity, I had a transplant almost two years ago without a transplant I wouldn't be here today. Im very lucky and very, very grateful.

[Bolly]

Why do you think you will need a transplant. I've had liver disease since 1976 and am nowhere near being considered to need one. I have viral and autoimmune hepatitis and had HCC (same as David Bowie). Liver damage progresses slowly if you know the cause and are doing something about it. You could be just as likely as the next person to die of something unrelated to your liver.

[AyrshireK]

If it comes to the point of you needing a transplant then you will NEED it.

There are so few donor livers available that they don't just give them out to all who are poorly - you only reach the top of the list and get the call for a liver when there is absolutely no chance of survival without it.

If you reach that stage then sadly the option will be transplant or non-survival.

Some people don't get the happy ever after following transplant but some really do and even with a lengthy recovery period whatever comes after transplant is likely to be better than the alternative i.e. dying of liver failure as sadly some on here have seen.

My hubby and I felt we'd got a golden ticket when he got assessed and listed for TP and rather disappointed that he got taken off the list but we'd had the wrong view of TP. It is a life saving operation (full stop) and since the risks outweigh the potential benefits at this stage he is better off staying away from surgery for as long as possible but we hope and pray that should he ever start going down the slippery slope of a decompensated liver again then the doctors will review the situation and hopefully save his life through one of these great gifts.

Katie x

[chandler54]

Hi, I don't think you would be given a transplant unless you really need one.

My husband seems to definately need one and is really ill but he was wavering too.

I told him that it was the only option and I think he would be very lucky to get the chance.

It must be a scary thing to face but better to maybe have the chance to hopefully get better ,than to live in misery each day with not much quality of life.

He does,nt even enjoy his food anymore and has to have an ascities drain every two weeks.

[jenniwren]

After living with Auto Immune Hepatitis for nearly my whole life, I had a transplant 3 months ago. Whilst I am still recovering, I feel incredible and felt amazing after just a few weeks. I cannot express how much difference the transplant has made. I have more energy, I feel more switched on and I can feel that when I am up to full strength, I will be unstoppable!

I won't say it's been an easy few months. There have been days of lots of pain and i have had two episodes of rejection which were terrifying. I trust the team that I am being looked after by and this week, for the first time in possibly my entire life, I had normal over function tests.

If you are being considered for transplant by your liver team, there is a good reason behind it. Transplants are huge operations and there are major risks associated with such surgery so the consideration for one is not undertaken lightly.

I will happily go into more detail about my experience if you wish to ask any questions, please message me and I will do my best to get back to you.

All the best

Jenni

[Raksha1964]

I had emergency transplant 16mths ago, so signs or warning. When diagnoised was in coma & other organs failing, family was told I had 48hrs. With hours to spare, was luck. Is it a long road? Yes, but no body the same. Will I be back to good health? So much better than you are now. If you need one, you need one! Will save your life.

Try & stay positive, they wouldn't do it unless no alternative. Good luck xx

[Hidden]

Personally I would say it's one of the best decisions I ever made. I have HCV and had suffered a slow decline in my health for over 15 years, 3 years ago I had a portal occlusion and had to give up work. The last 2 years have been awful; nausea vomiting, not sleeping, getting confused all the time, I had to give up driving and riding my motorbike some thing I love, lack of libido, impotence, at times incontinence, regular colonoscopys and endoscopys, crushing fatigue, Jaundice, acites, oedema, chronic depression. Before the transplant I was suicidal, I just wanted to die rather than live life like that. Even immediately after the transplant, when I was in pain from the procedure and still felt the above symptoms of the disease. I was begging the doctors to let me die but as the new liver started to clean my system up and the Doc's got the pain management under control, I have a reaction to Morphine, things started to look better. Since then apart from some issues with pre existing conditions ie separate from the liver damage. I have been improving daily. It's now 4 1/2 weeks since the transplant and my recovery is going well I feel better than I have for years. I still have HCV as it has defied 2 attempts at treatment and I didn't achieve an SVR, but there are new drugs coming on to the market all the time. Even if I only get 10 years out of this liver and I have been assured that once the HCV is cleared I could (if I look after my self) get 20 years, as I'm 57 some thing else will probably get me first. The transplant is well worth having. Sure it can be kind of spooky having a piece of a dead person inside me, and the recovery process can take up to a year, in the early days it is frightening and actually hard work you have to engage with the process, but now I feel good, optimistic and now have a future to look forward to with my loved ones.

If you are offered a listing for a transplant grab it with both hands, you may feel ok just now but liver disease is like that you don't realise how sick you are until it gets really nasty. The Medic's doing this work know what they are doing if they say you need a transplant, you need a transplant!

Good luck and take care.

[acjb007]

Thanks for your support and comments. I didn't mean to sounds negative or selfish. The reason I think I'll need a transplant at some point is I have chronic liver disease with severe cirrhosis. My past 2 fibrescans were 75kpa which is the worse score you can get. I suffered a serious bleed in 2012 and was lucky to survive. I still have varacies but my liver function remains compensated and amazingly functioning normally. My specialist said he thinks within the next 5yrs I will inevitably suffer some form of illness due to the extent of the damage. They told me due to me remaining sober and continuing to hold down a full time job I'm almost certain to be accepted for a transplant when the time comes.