I hate the way I feel about the thought of a new liver transplant. I have made it know to doctors about my feeling towards a new liver transplant. I feel great at the moment and I only on one type of tablet a day. For my liver condition. After I have a new liver transplant I will be on 27 different tablets just to support the new liver. 27. That can’t be healthy for the long run. People close to me try and convince me it’s going to be a new release of life after having the transplant. I really not convinced. I am already fed up of making the 1 hour journey to the QE to see the doctor and have my bloods taken. It’s about a one minute conversation I have with him. I know he love for me to more negative about the way I feeling but I honestly feel great within myself. I hate The fact I feel like I am married to the QE and I can’t get a divorce. I also hate the face I have waited for 3 hours just for my appointment at the QE just to tell the doctor I am feeling fine. Then I have bloods taken. I get up at 7am in the morning and go to bed at 11pm. I do feel more tired after eating lunch. So about 2pm for a hour or 2 I have a little nap or rest. This includes reading a book if I can’t get to sleep. Then I am up again. I keep up with all my house work. I doing more excise. I miss my old life of travelling and camping. I not please that I put on weight of a stone over the year. But the doctor seemed pleased with me because I have. I not body builder I have no desire to have big muscles and eat lots of protein. Anyway I also convinced that Russia will want to go to war with us within the next year or so. So having a liver transplant and being on 27 different medication really does leave me feeling fragile. I have spoke to close people about this matter my family is a no go because it’s upset too much and Volteck wants to spark all the doctors at the QE out.
thank you. Rant over.
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LucyBarrett
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Hi Lucy, I am sorry you feel so conflicted about liver transplant and made the decision not to go ahead when phoned in yesterday.
It sounds like some of your research has taken you down a rabbit hole with some of it being not quite accurate.
Have you ever had the chance to actually chat with post transplant patients to see what the realities are of the post t/p medication regime? I know that immediately after the operation there are loads of medications to take but as the liver settles in and risk of infection, blood clots etc. wain so many of the meds get weaned down and removed.
The British Liver Trust often host virtual pre and post transplant support groups plus there are pre and post transplant support groups who have pages on Facebook etc. The QEB used to have a pre and post transplant support group too though I don't know if that is still running with all the Covid stuff.
Obviously, you've been poorly enough to be listed and those recent bloods obviously flagged some sort of deterioration which meant you were the poorliest in your blood group, body size category to match that donor liver which became available.
A lot of forum members on here have felt fairly well up to the point of transplant BUT didn't realise how poorly they were until they'd had the op. and were on the mend and suddently feeling much better after the op. Your bloods and probably symptoms are showing doctors that you are in fact not well at all.
As regards the risk to Britain from a certain despot president that just isn't going to happen, without going into the politics of it all - he hasn't got the means to take on any countries which are part of NATO unless he want's to start WW3 and basically we're all b*ggered in that case. I think your anxieties have gotten the better of you on that one or potentially are you suffering from Hepatic Encephalopathy? I note you say you are only on 1 medication just now so are you not on Lactulose/Rifaximin to treat toxin build up?
Ok, at the moment you are suspended from the list for refusing the t/p - hopefully they will get you back in to QEB soon to have a chat with transplant co-ordinators. No doubt the call came out of the blue having been told you were way down the list the other day and it's natural to not want to go through a major op.
At 41 you are risking a lot to say a flat NO to transplant and although it doesn't always provide a golden ticket to a happy ever after, it is a life saving operation ONLY. They don't give them out on a whim, people need to be really poorly to be offered a liver and that means you are really poorly just now.
Maybe take the wee break from the list to regather your thoughts and work out what you really want/need. It may be that further down the line you get much more poorly or god forbid develop liver cancer (which is why you should have 6 monthly scans and bloods done) and your ship may have sailed as regards being accepted for t/p.
Do you have family support to attend clinic with you or has this been a journey you've done alone? Having support to be with you and help make sense of med speak etc. can all help big time because sometimes being the patient it is hard to see what is being explained.
My hubby was on the list for 10 months, he actually improved a bit following some surgery on his spleen and got delisted. At the time we felt the light at the end of the tunnel had been snuffed out - he certainly wasn't revelling in the prospect of major surgery and the post op regime but if it gave him his life back or stopped him from dying then he wanted the chance.
We know that because hubby is fully compliant with all the medical regime that if his condition did deteriorate he would be reassessed and hopefully listed and given that chance.
It sounds like you need some supportive chat to weigh up the pros and cons. Some of your self research regarding life expectancy and such like has definitely led you astray. Britain's longest living liver transplant recipient was/is still going strong after 40+ years having been transplanted in the early years of the technology in 1975. Modern techniques and modern medications mean this isn't such a rarity.
I can't sway you either way - I am just trying to shine a light on some logic. It's your own life and your own choice at the end of the day but think about it very, very clearly as regards what happens going forward. Transplant is the last ditch treatment option when all else has failed, it's a life saving operation. Choosing not to have one means in effect your illness will likely be terminal and at 41 that's a very young age to be clocking out.
Make sure you have some discussions - particularly with actual patients who have gone through it and are living with the post operation regime, I am sure it's not as dreadful or dominating as you fear.
Enjoy your Christmas and perhaps make an appointment with transplant team in the New Year to weigh up what you want from the future.
What a dilemma you have. There is so much rubbish out there on the internet and most of it needs to be taken with a pinch of salt. I would like to try and dispel some of these myths and to try and get you to think and feel more positively about having a liver transplant.
I had my liver transplant carried out at the QE back in 2016. As Katie has already mentioned, you never really get to know just how sick you truly are. I was on the liver transplant list for just 12 days before I got the call.
Before you get put on that transplant waiting list the liver would have most likely reached the end-stage liver disease stage. This means that your liver has reached a point where it is now struggling to function. This also means that there is little chance that it will ever be able to recover enough to function. If a person wants to live, then a transplant is the only option.
Surprisingly enough, not everyone agrees to have a liver transplant and I suspect they have their reasons which I totally respect. But we all have that built-in survival instinct that kicks in when our lives are threatened.
I am also about an hour away from the QE myself and have always found the staff to be jovial and helpful. I just find that a warm smile helps put you at ease.
When that phone call finally happens, so many thoughts are racing through your mind. Even thoughts about your survival are there. I have always used humour in times of stress and worry.
One of the nice touches they do at the QE is when you are wheeled down to the theatre, whilst still in the prep room having your premeds. All the operation team introduce themselves and explain what their function is during the procedure. Everyone is working together as a team and everyone is there to support you every step of the way. The next thing to happen is you drifting off to sleep.
While the procedure is the same technic, no transplants are the same, as there can be complications and unexpected things can happen. But the team are all very professional and knows exactly what they are doing. I think there are still some websites that say a transplanted liver has an extended life of just 5 years. This may have been the case at some point, but transplantation and medication have come a long way since then. 20-30 years is now uncommon nowadays.
The problem they had with me, was that my donor's liver was a lot younger than mine. So they had difficulty connecting all the plumbing bit us. My veins were a lot thinner than those of the donor, so joining everything together was a bit delicate. But like I’ve said, these guys have all done this many times before, so everything else went well.
If there are no complications then the operation can last around 5 hours. Following this, you’ll most likely spend the night and the following day in the intensive care ward. Here it’s pretty dark with machines bleeping, but you’ll not really notice this as you’ll still be heavily sedated.
You’ll then be wheeled up to ward 726 which has a lovely view of Birmingham University and the clock tower. For the first few days, you’ll feel like you’ve been hit by a bus. But there isn’t much pain as you are given morphine which you can increase the dosage if and when you feel you need to. If all goes well you’ll be in hospital for about 9 days in all.
After about four days, they’ll try to get you to walk about a little by day six you’ll be walking around and going downstairs to the shops and generally get about.
You will be sore for a while, a liver transplant operation is a major surgical procedure and you’ll have drips and tubes plugged in. Once these have been removed you’ll feel a lot better. The medication you’ll be taking will have been tailored to your requirements, and yes there can be a lot of pills to take. I was being treated as a type 1 diabetic so I had loads of meds to take and insulin.
As you continue to recover at home, these medications will slowly start to be reduced and stopped. You’ll have to take anti-rejection medication for life. But this is a small price to pay for having a life.
At first, you’ll make regular visits to the QE so your recovery can be monitored. There is always a chance of rejection but this can be handled well these days. After about 6 months you’ll be well enough to return to work, and start to live your life again.
Here I am, 6 years later and everything for me is fine. I go back down to the QE every six months, and now I only take one tablet twice a day for anti-rejection. I’m also looking to have even this reduced.
In 2019 I and many other liver transplantees all met up at the Aston Villa Football stadium in Birmingham to celebrate the 5000th liver transplant milestone. It was so nice to meet up with the operation team once again. 5000 liver transplants should reassure you that the QE know what they're doing.
Everyone’s liver journey is a story waiting to be told. Many of us treat it as a form of rebirth. It’s an opportunity to get rid of any ghosts, or skeletons we may have in the closet. It’s a time of new beginnings and a fresh start. You can make plans and look to the future.
Having a positive attitude is so helpful.
This is why I like to try and share my experience to hopefully help and support others. I am presently acting as PPI (Patient Public Involvement) in five different liver-related trials and programs with five different universities. I’ve recently applied to join Birmingham University as a PPI on the liver research team.
If you would prefer to talk in private then please message me. If I can help and reassure you then please let me know.
Try to remain positive, new year, new beginnings, new Start. Go for it.
When I was first told I had to have a liver transplant, I was reluctant too. I just didn't want to be on medication for the rest of my life. Up until my diagnosis I'd only ever had antibiotics and paracetamol, so the thought of long term meds put me off.
However, I am now almost 10 years post transplant and still only take 3 different drugs per day, tacrolimus for the liver, amlodipine for BP and warfarin after having a couple of PE's.
Please start thinking of the positives about post transplant life, like the fact that you can travel and go camping to your hearts content. Take it from me, having one will give you a new lease of life.
Hi Lucy, I know how you feel, when transplant was first mentioned I told the consultant not to be so stupid I wasn't ill. It took several doctors to convince me to have a transplant assessment when I was told I defiantly needed a transplant or I wouldn't survive a year, reluctantly I went on the list. Every month I had a two hour drive to Addenbrookes where very time I told them I was fine just to be told no I wasn't, I was convinced that when they opened me up they would take one look at my liver and say they were wrong. I was so shocked when I woke up in icu to be told i now had a new liver, I asked about my old one and was told it would only have lasted a matter of weeks. Liver transplant is a very expensive procedure and they would be putting you on the list of you absolutely don't need it.
I was very anxious about all the medication I would have to take but the amount does lessen as the weeks go by and your trips to transplant hospital get less and you will possibly be transferred to the care of a more local hospital.
If you use Facebook please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, thousands of people that have been in your situation.
Talk to the transplant team about your feelings they have heard them all before.
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