I really don’t want a liver transplant but do not know how to get of the list for good.

[LucyBarrett]

I really don’t want a liver transplant. Last year in December I was out on the liver transplant list. I got called in within less then a week after being put on the transplant list. 14th December 2021 to be more precise. But it never happened. And just felt the whole excise was a trial run. I been attending my six weekly appointments at the QE and I honestly feel great and well in myself. I am on the right medication and my illness has improved. I did get worried when after my last six weekly appointment in August I did not receive a following letter for the next six appointment. So I phoned them up and they just said they are short staffed and very busy. That’s fine. I wasn’t feeling Unwell. So I didn’t bother chasing for an appointment. Then I had a phone call my local GP saying that they QE been on the phone to them and asked them to take some bloods from me asp. Fine no problems their. Then I had a phone call from the QE asking if I would do this excise trial. For research purposes. That’s fine. So I went to the QE last Thursday. Which was the 15 Dec 2022. All was good. I met a doctor. He said I was number 70 On the waiting list. Which doesn’t mean much to be honest. About another 6 month wait. As on average they do 2 liver transplant operations at the QE a week. Then yesterday in the morning of the 20th December 2022 at 7am. I had a call saying their was a potential liver transplant for me. I refused it. Then at 10am I had another call from a nurse asking why I refused it. It’s the life after the operation and all the medication 💊 I have to take for the rest of my life to support the new liver that scares me. I just rather keep going with the old one. I felt so good today and just so stressed free. I am not convinced a new liver is the answer to my problems. And I felt like that before going on the list. I have been suspended from the list. Which is fine as I have told doctors that I don’t feel ready to have this operation. I am 41. I done all my research on the survival rate of people having the liver transplant. 75 people out of a hundred will survive for the first five years of the the liver transplant and the rest will die. And the longest I could live for with the transplant is another 20 years If I was lucky. man’s the thought of being on 27 different medication after the operation just makes me depressed. It’s a death trap. Well that how I currently feel. Am I the only one that feels this way. I just feel like if I am going to die then this not the way I want to die. I just happy the way things are. 

[jazzjam]

I would think by just not going to any appointments would take you off the list but also as you have refused this transplant I would imagine you will be temporarily suspended from the list anyway.

Havw you had a full and open, honest discussion with your doctor?

At the beginning you must have gone to the doctors feeling unwell for them to find your liver was not functioning well? Maybe I nis understand. Do they know hy your liver is not functioning as it should be?

[Smokey001]

Hey Lucy

I kind of agree with you .If you feel fine and are not worried things will get worse, then stay as you are.

Only consideration, if you do need a transplant in the future, your ship may have sailed when you arrive at the dock.

To my mind you are a brave lady

[BritishLiverTrust4]

Dear LucyBarrett

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers). This includes a Pre and Post Transplant group which is very supportive. The members have a lot of experience and insight to share.

If you are in the UK and would find it helpful to speak to others with shared experience, you can register to join a group here .

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust