Does anybody know what percentage of people with liver cirrhosis actually go on to have a liver transplant?
Im 33 from the uk with Nash cirrhosis, compensated, I read on the British liver website that each year 4000 people die of cirrhosis while 700 get a transplant which makes the odds sounds pretty bad,
does anyone know?
thanks
Posted May 9, 2023, 9:14 AM UTC
Hi. The statistics for all transplants undertaken in the UK are available at:
The recent numbers here are possibly a low ish baseline as there was a period during Covid where there were hardly any transplants being performed. There were simply not enough ICU beds available during that period for transplant patients and rightly or wrongly they had to prioritise Covid patients who were in immediate need of those beds. It was a subject of hot debate within the NHS.
I think it would be very difficult to get hold of an accurate % beyond what you already have researched. Focussing on such statistics, whilst something factual to grab hold of, is not always helpful though in my experience. I used to obsessively check these stats but the reality was, and is, that these numbers don’t really go very far to helping any one person understand whether they will need or get a transplant, and when that might happen.
So many factors to consider, as not everyone who has cirrhosis is able to undergo transplant, and people might not wish to consider going down that route either. It’s a huge surgery, and each case is different. The way that they run the transplant system here is also complex though also simple, in terms of availability of donor livers, matching to potential recipients, geography and availability of beds at each transplant centre.
I guess that’s some of my thoughts. It would possibly be helpful for you to discuss this with your Hep next time you see them. As you don’t state whether transplant is something that’s needed or or on the cards for you (and that’s totally your private business, I respect that), I think I’m trying to say in a very long winded way, don’t get hung up on the stats if you can help it.
Hope some of this is in some way helpful…. 🌸
I'm 36 and had a transplant 2 years ago. I was sober prior to transplant.
Your age is in your favor, do you work, are married, have 1 yr sobriety, or children? Those all matter, too💚 I’m 39 and being transplanted in the fall.
Is that how they prioritize it? I have no wife and children so just pack it up when the time comes? Not sure but that doesn’t seem entirely fair. Then again my doctors won’t discuss it with me yet.
I don’t believe that to be the case, no. People with no spouse or kids still get transplants. I know such people.
As part of the transplant assessment process they do ask questions about what support network you have, because practical and some logistical support is needed after the op. And they do an emotional/psychological assessment too because that’s important. However, not having spouse or kids does not make you less eligible to be listed if you need a transplant. Recipient selection at the point that a donor liver is available is based on clinical need and closeness of match of organ to listed recipients, not what family a recipient has. 👍🏻🌸
If they won’t discuss it, it means it isn’t on the horizon yet, so rest easy. Sobriety and age are major factors, as is having dependents and yes family support and a job also come in but not as important. You can only control sobriety, hang in 💚
Is that how they prioritize it? I have no wife and children so just pack it up when the time comes? Not sure but that doesn’t seem entirely fair. Then again my doctors won’t discuss it with me yet.
Is that how they prioritize it? I have no wife and children so just pack it up when the time comes? Not sure but that doesn’t seem entirely fair. Then again my doctors won’t discuss it with me yet.
Aside from the transplant statistics, I do want to add:
Transplant seems like a glowing exit sign in the beginning, but honestly, it isn’t the best course for everyone. It comes with major risk, and is a procedure that often needs redone ten years later. It comes with a year of immunosuppressants and a lot of physical trauma. Becoming stable with diet and medication is possible, and is the chosen course for many people. This is also why transplant numbers may on paper look low— not just because there aren’t enough organs available etc, but often because a person doesn’t actively at that moment need one to survive and achieve relative stability. For example, I began this journey with a MELD of 33 and am now a 6, no transplant.
My sister just so desperately wants to give me part of her liver, but she struggles to understand why (even if we were a match) I won't take it from her. It is an interesting and complex (ongoing) conversation that I think is more accurately about mortality and grief. I think it makes people uncomfortable to recognize how badly their body could break down--and the answer might be to just live with it, rather than "fix" it.
Having this disease has def caused many conversations with my SO about mortality and dying and stuff. But it is only between us, other people may not appreciate our sense of humor. I would be hard pressed to accept a living donor - that’s a lot to ask of another person - probably too much.
That is kinda where I am with it. I don't begrudge anyone who makes that choice, I just don't feel like I could. But my cirrhosis is also well managed right now. Who knows how I might feel if that changes? I never thought I could stand to have surgery at all-- until I needed it. Then I just did it without a second thought. Hopefully, I will never have to find out.
ETA: I hear you on the private, dark humor. I also had cancer recently, so two big jokes between me and my SO are: [after a long list of tedious things] "AND cancer!" Also, when something is frustrating, "Stupid, sexy cancer!" The problem is I occasionally just say them out in the world now, and they take way too long to explain. So strangers just think I am assholishly glib about cancer.
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My brother, so I hear you
What have you done ? Just looking for general dietary and exercise tips.
Most people will be on a low sodium diet, with other specifics regarding protein/potassium/phosphorus/fluid intake. Whatever those guidelines for you are, stick to them like glue. Exercise wise, the general recommendation for most cirrhosis patients is consistent and low impact— now, this doesn’t mean super easy, it really just means something that doesn’t send the heart rate sky high or put too much strain, ex. Walking or elliptical instead of sprinting, yoga, lifting light weights instead of heavy dumbbells, swimming, etc. The reason for this is related to portal hypertension and esophageal varices, which are both super common in patients.
Also keep in mind that the flu to a cirrhosis patient isn’t the same as the flu for a healthy person- things hit us harder. I still go out and am around people regularly, but just be careful. I bring sanitizer and make sure nobody is too far in my face. If there’s a giant covid outbreak in my area, I may take it easy a couple days until it slows down. Just small things like that. I don’t much go to an actual gym and do most of my work outs at home, but if I were to go to one I’d make sure it was one that diligently cleaned machines between sweaty people.