Donna 68

[dougalgromit]

Hi I was looking at a letter my husbands surgeon had sent to the consultant the surgeon had said that my husband as listed for transplant and was listed for any graft and had a Ukeld score of 55 stating again that it is very possible that he will get transplanted sooner rather than later can anyone please tell me what this all means please as this is stressing me out so much thankyou

Donna xx

[AyrshireK]

Listed for any graft means your husband is a suitable candidate for a liver from a brain deceased donor, cardiac deceased donor, live donor or split donor liver which means he is able to have the widest possible type of available organ - some people for instance can only accept a full liver from a brain deceased donor so it narrows the donor pool.

The UKELD score is the United Kingdom Model for End Stage Liver Disease - it's basically a score they achieve from doing a mathematical sum using figures from blood tests - Serum Creatine, Serum Sodium and Serum Bilirubin and blood clotting time (INR). The full equation can be found at :- en.wikipedia.org/wiki/Unite...

It is used to calculate the survival prognosis of a patient and was until recently one of the major deciding factors on qualification for transplant where a minimum score of 49 was the baseline for transplant listing. A score of 55 is at the lower end of the UKELD scale & represents a longer survival time without transplant. With the new system of allocating livers the UKELD score seems to have dropped out of some signficance and at the end of the day it was just a statistical guide - symptoms are more significant.

I really wouldn't stress, your husband is listed for transplant, the priority is to keep him as fit and healthy as possible now in the run up to receiving the call. If his t/p team feels he is in more urgent need than others he will be higher up the list and fingers crossed his call will come in good time.

All the best to you both, Katie x

[dougalgromit in reply to AyrshireK]

Hi Katie thankyou very much for replying to me it has really helped. I really appreciate coming on here as anything I feel is worrying someone always help me understand what’s going on my husband is still trying to keep active even when he is feeling really tired thankyou again and if it’s ok I will keep you posted to let you know how things are going love Donna x

[Barnetaccounts]

Hi, as stated by Ayrshire he is available to be transplanted by all the possible candidates. I was only eligible to receive an organ from a brain dead donor. It took 18 months but it did arrive. The thing to take comfort from is your husband like me was in reasonable health in all other aspects. They kept control of any potential tumours by embolisation which stopped any increase in numbers or size, and although the wait was excruciating there were people in much greater need than me. As everyone is aware my transplant was aborted, and my prospects weren’t very good at all. It was hour by hour for nearly a week. That all took place in November 16 and I am not only still here, I am actually tumour Free. I had embolisation #11 on Tuesday to keep 2 areas that still show unusual blood flow, but no actual tumours. You will go on a roller coaster ride of feelings and it can be extremely emotional. Never lose sight of the prize, an extended life for you both to enjoy. I write a blog about my cancer journey, it can be found at 1liver1life.wordpress.com I write from the heart about the whole experience, the good, the bad and sometimes even the ugly. I have a huge amount of friends who are all in regular contact, and when things got really tough, I was kept alive by everyone’s love. You need support through this and my advice is not to bottle up your feelings, find someone to talk to, shout at but importantly for me I never kept anything a secret. I spoke about everything all the time, in a way that kept me sane.

Good luck and stay in touch to let us know how you are getting on.

Ray

[dougalgromit in reply to Barnetaccounts]

Hi ray hope thankyou for telling me about your journey I am trying to stay really strong for my husband he says that he is really looking forward to having a good healthy life as am I but if he sees that I am worrying it brings him down as he then worries about me so I try keep a brave face but I feel really upset I try not to talk to people about what’s going on as I will end up in tears I have to keep strong for my husband and my family I am so glad you are doing well at the minute I will keep in touch if that is ok thanks again

Donna x