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.
Written by
LucyBarrett
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Hi Lucy, thank you for your very brave and honest post. A transplant is the best gift for some but not everyone feels that it’s right for them and there are risks associated with such a major operation. You are the only one who can make the decision.
My Mum decided against a transplant. She decided that at 75 and very frail the risk of the operation was too great. She died 4 months later. I supported her decision, it was right for her although I miss her terribly and nursing her through end stage liver disease was just awful.
One of Mums friends gave her a really hard time over her decision because she didn’t want to lose her friend. So e prepared that not everyone will understand and it could cause rifts.
My one question for you is: what would you do if you weren’t scared?
I completely understand your worries and apprehension on going ahead with the transplant.
I am 5 years post and I was always wondering whether I was making the right decision, this was made even worse due to the fact that I felt really quite well in the few months before my operation.
I know you say you feel well like I did which makes it very difficult but I certainly have no regrets.
I know people’s outcomes are a lot better for some than others but I think you are seeing too many negatives.
You refer to all the medication, for the first few months I was taking only 5meds and now I only take 1 which is an anti rejection drug.
With regards to my health, I have had no issues with the new liver and I am now on annual checkups. The consultant has said that there is no reason why I can’t expect a normal life expectancy
I know this situation is so difficult and scary but I know you wouldn’t regret it.
Hi so I am just getting back to you as I have been busy .Lucy I have not had a liver transplant my doctor in the hospital keeps a eye on it and I get bloods taken to who do you see in the QE hospital is it the one in Glasgow have you been on the British liver group they have people that has a new liver transplant and some who are just waiting for one . also there have a liver transplant group on the what's app that you can join I hope this helps you let me know how you get on.
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