the wait for a transplant

[caseyliver]

How long do most wait for a transplant? How sick do you have to be before a transplant is offered?

[Bob3131]

Well what can one say it depends if they can match you with a donor (ie your bold group is a big factor but that's not the only thing that they look at.)

They really want you as fit as possible and that is why they will put you on some drugs to help you through the difficult times and believe me they will get difficult having been through this myself I had my transplant at Kings College Hospital in 2010 I was on the list for 2 weeks and my blood group was A I was very very lucky you need to keep as positive as possible and do what they ask you to do and if you don't get the answers from your doctor speak to the transplant co ordinators they are very good keep strong and all the best....

[Hidden]

As Poole says, it depends. You can feel quite well with liver cancer, for example. Waiting time depends on the seriousness of your condition and it can be very short. I had my transplant in December 2011 after a diagnosis of cancer in March and being out on the list after lots of tests in June. The seven UK centres have slightly different waiting times. Hope this helps.

[AyrshireK]

Am I right in thinking you've already had a transplant Caseyliver? Just read back some of your posts.

Here in the UK people are only considered for transplant following an intensive assessment during which their suitability (health wise i.e. conditions other than liver which might come into play during surgery - heart, lungs, any other cancers etc.) is assessed together with a very thorough investigation of bloods and current health of the liver etc.

In the UK there is a minimum score on the UKELD Scale (Meld in USA I believe) which people need to be at - its a mathematical calculation based on bloods and presence of ascites, HE, varices etc. In some cases i.e. in the case of liver cancers the scoring system is disregarded as the liver can be performing ok but the risk of mortality due to the cancer are higher so a transplant is more urgent.

The length of wait varies enormously some people wait only hours or days after being listed whereas some will wait years (I know of at least 2 people who have waited 2 1/2 plus years as we speak). Position on the list is based on clinical need with the most needy getting one first but also depends on blood type and body size - this dictates what type of liver you can accept and from what type of donor (i.e. need for split or whole livers).

As regards how sick you have to be well some people i've met have been working and driving right up to getting their call whereas some have been bed ridden, practically comatose and in a very bad way.

My hubby was assessed in June of this year and accepted onto the list based on blood levels and the fact they have done all they can (not a lot) to treat his actual liver condition - he had cirrhosis of auto-immune cause, portal hypertension and varices before we even knew he was poorly.

At assessment they discovered he had aneurysms in his splenic artery so they had to treat those and he was finally listed for transplant on 3rd July.

He is exhausted all the time and depressed, spends more time in bed than out of it, can no longer do much physical activity and he's having difficulty with cognitive function too (becoming confused, having difficulty reading and understanding) - Doctors have put him on Rifaximin to treat what may be signs of hepatic encephalopathy. He's in a pretty low place just now but at the last clinic appointment we were told that his blood levels have improved and he currently doesn't meet the conditions for transplant so he's probably at the end of a long list (in Scotland there are around 50 people waiting for t/p - about 30 of these will be Blood Group O of which my hubby is one). We've been told we will have a long wait, if indeed he ever gets one and that is due to his bloods being better even though his life is pretty rough and his liver isn't going to get better. We just have to hope that the system works and that if/when his condition does deteriorate the monitoring will pick it up and move him up that list.

Katie

[ancientadolescent]

To an extent it depends on several factors. You past history (alcohol), your present condition (critical), your blood type ( you have to wait until a liver that is compatible becomes available). In my case I waited approx 18 months before being placed on the donor list and then another 18 months before it was my turn. By that time I was very ill and lucky to survive the operation. I wish you the very best of good fortune in your journey forward. A further piece of advice,be positive, not assertive, but do not be fobbed off.

[bill-i-am2]

Hi. I waited 9 months & am type O. Before being diagnosed I hadn't been ill.That soon changed & I was assessed for transplant a year later. I had oedema, varices banded, felt bloated & very tired. I kept positive though, ate healthily, kept working despite all odds even surprising the consultant. I was even working the day of the call & drove myself to the hospital. there are no guarantees if and when you receive the gift of a transplant. There are complicated rules on allocation between transplant centres & compatability. You just need to stay positive, try to live life as best you can & keep your phone with you.

[PeterP54]

I was put on the Liver transplant list in the February and received the transplant in early April. I was very lucky.

I had been diagnosed with PSC some years previously. During several years of PSC/liver clinics I always replied to the question "How are you" with the reply: "fine". And I was. No noticeable fatigue, no itching, no noticeable jaundice. It was a surprise therefore, after a normal December liver clinic, to receive a phone call saying "my numbers didn't look good and could I come in the next with plans to stay a week for more tests".

I didn't feel particularly ill but I guess that my test results were saying otherwise. In fact it's only looking back that I can say that I was probably a bit fatigued and my thought processes had slowed down during the previous six months. At the time I put these symptoms down to a new job and simultaneous part time study for a masters degree.

I will repeat what I said earlier, I was very lucky.

[bill-i-am2 in reply to PeterP54]

I agree, I feel very lucky indeed. When I was ill I thought the end was nigh but miraculously I recovered & said the same as you, yes I'm fine as I thought I was. However looking back my thought processeses had deteriorated too, I couldn't do any diy tasks, work exhausted me & I had no desire to go out, couldn't ride my bike etc. But as you, I kept going, believing I was ok, yes we are indeed the lucky ones. It is a terrible disease & my thoughts go out to those waiting patiently. All the best PeterP54.

Bill

[SunnySideUpDawn]

I waited 11 months on the list.

[Dan68]

I was already on the list for 3 months when they discovered tumours on my liver. I was then put on the priority list and recieved a tp 6 days later. I had originally had hep c then cirrhosis then cancer all in turn. I'm 18 month post transplant now and enjoying being better and alive. Good luck

[Some-bits-not-original]

3 months the first time and 7 months the second time 20 years later. First time walking wounded, next time in 2011 not so lucky in hospital for the whole time.