I am on the UKELD score, but not too severe at present. I am doing everything I am supposed to. My cirrhosis is as a result of NAFLD. I have had some bleeding varices-- 3y ago, and about 7 more banded more recently. I have also had some ascites, which was treated with pills, though these are affecting my kidneys to some extent. Are there any statistics indicating how many people never get the transplant they've been told they need? I managed the first 5-6m on the waiting list okay, but have to admit, it is getting to me a bit now. Any other advice from friends in this support group?
Best wishes all.
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taar
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Consider getting a living donor liver transplant in India or Turkey. You need to have someone willing to donate to you like a sibling, offspring or a close friend. Of course they need to be healthy.
Search on google -- living donor liver transplant Turkey (India)
The best hospital in India have success rates as high as Europe and the USA.
I am not telling you this is the right or best thing to do, just suggesting you learn about it.
Hi Ken... I don't think this would be an option for me, even if I had someone suitable to donate, I think I would be reluctant to impact someone else's health. But it is something worth thinking about, which I hadn't thought about before, so thank you....
I feel I get support and kindness from all involved...I did say to the consultant about finding it difficult and he smiled kindly, and said, "It will happen!"
So difficult I know. My husband has been waiting nearly 18months. We have had 3 calls to go in, each time been cancelled due to the donor not being suitable once it arrived. We have also been through reassessment, talk of taking him off the list for a bit....its all been a nightmare. But at the end of the day, it is what they warned us might happen - so we've grown to get used to living like this. (As much as we can). There is a Facebook support group I think and maybe an online group through the Liver Trust-I haven't bothered with either of these because they don't suit us. Other than this, we're on our own. Gps, school etc just don't understand what we are going through. Everyone compares it to waiting for a kidney transplant for some reason 🤷♀️, I've even had Gp ask me if we have a date for the surgery!!Take care
Hi taar, I waited for 10 months before I received a transplant and I appreciate how difficult it is. Since having had the transplant, my life has transformed and so all I can say, is hang on in there and when you are least expecting it, you’ll get the call. I had fantastic support from my family, friends and medical team throughout the wait and I hope that you have a support network too. It’s a difficult journey, but absolutely worth it. I wish you all the very best and take care.
Thanks Chasdog, it helps to know others have had similar experience. I am lucky in that I too have a lot of support, including from my employers. I'll hang in there!
No transplant waits are the same unfortunately. I had a high UKELD score was listed for transplant sat waiting for almost a year all the while my health deteriorated. My daughter became seriously ill and this on top of everything else made me decide to suspend my transplant listing. 6 months later I asked to be put back on the waiting list I had a refresh of the tests for transplant suitability. I was relisted and sat and waited. All the while I was getting worse and my consultant advised that I had little time left before I became unsuitable for transplant. Approx 3 weeks after that consultation I received the call. It was a bumpy recovery post operatively due to being so ill prior to transplant.
My health has been transformed following my transplant and I am now 7 years next week post transplant.
My advice is stick with it and you will get your call. I only wish I hadn’t suspended myself due to my daughter’s health which was unavoidable at that time. As I would have been stronger and recovered sooner.
Thanks Hayls48. I don't know why but somehow it helps to hear other peoples story, so thank you for sharing. I am glad you seem to have improved so much post transplant. Best wishes. Taar
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