Wondering

[Wowz]

I was wondering my husband got on the transplant list Dec 2018. His meld score is 13 so not real bad, but he has the 3rd rarest blood type so he 3rd on the list of his blood type. My question is to people how fast did your meld score move from like 13 to 17 or 17 to 25. Anyone he gone through the processs?

[Adelou]

My husband had a UKELD of 60 when he went for his transplant assessment which meant he had 50% of surviving he rest of that year without a transplant

Luckily for us he was only on the list for 4 days before transplant.

There can be many factors that can determine how quickly your score can increase so you are best speaking to your consultants to get the right advice

[Hidden]

Not sure that being third on the list for that blood group means too much. There are so many other factors that are taken into account for exmple physical size but I believe there to be many more. I don’t know the full criteria but no doubt others on here do 😁. Who on earth told you that he was third? None of the other pre TPs I talked with were told that sort of info!

Not that I’m trying to dampen your hopes but just from my experience, and I sincerely hope he gets the call soon 👍

Best of luck

Miles

[AyrshireK]

What country are you in Wowz?

Most of us here only have experience of the UK system and in no way could a patient ever be told their exact position on the list as when a liver comes in it gets matched to a patient based on blood group match and also body size plus donor type.

We have a national allocation system now so it isn't just a list for each t/p unit now but nation wide.

The most poorly person always gets the liver - the liver transplant list isn't one you work your way up. More poorly people will always have highest priority.

We've had people on here who have literally been under anaesthetic and in theatre for their transplant when someone even more poorly came into the system and the liver was redirected to them leaving our poor patient to wake up anticipating having had the op but hadn't.

Sounds like your hubby has been listed early in anticipation of a longer wait. The most important thing for him is to keep fit and active, eat appropriately and keep as well as possible. My hubby was listed in June 2014 and we were told he was only ever 'borderline' for listing, eventually he was actually delisted as his bloods stabilized and hit took him out of transplant listing criteria.

All the best to you both.

Katie

[Hidden in reply to AyrshireK]

Hello - long time no speak. How is your husband these days? Not been on here for sometime. My daughter is not good currently; so upset for her constantly being poorly but never poorly enough. Seeing consultant next week and going to have a long chat; this is no life for a 23 year old. X

[AyrshireK in reply to Hidden]

Hi again, sorry to hear about your daughters continuing issues. Hubby is about the same, still muddling on. Sadly 'something' showed up on his last ultrasound in November and we've had a stress filled wait for a follow up MRI scan which he's just had this afternoon so we now have an anxious wait for the outcome of that.

Fingers crossed that both he and your daughter get some positivity soon.

Katie xx

[Hidden in reply to AyrshireK]

I hope the wait is not too bad for you both and that whatever is found is treatable; fingers crossed. It has been a while since an ultrasound for us but she is due one on the 8th and waiting for a dexa scan which will hopefully show bone improvement. Part of me wishes a liver had come in all those years ago as it highly unlikely that she will be listed again as bloods okay even though liver is cirrhotic. Working proves very difficult and full time impossible. Keep marching on Pam and Elle x

[AyrshireK in reply to Hidden]

As you know hubby hasn't been able to work either with his ill health and although listed in 2014 delisted again in 2015. Bloods remain stable but he is still far from well. Similar boat definitely to your lassie. The lesions they found on ultrasound are in the right lobe and we already know he has hemangiomas in the right lobe so we are hoping it is the same thing and doctor is just being cautious. His letter which told us about the outcome of the u/s said there were "lesions within the right lobe which were of doubtful significance with AFP being normal but it was prudent to check up" via MRI.

Fingers crossed it is all ok. Just hope we get the results really quickly as it has been a horrendous wait especially since its been since early December that we've been waiting.

Katie

[Wowz in reply to AyrshireK]

We live in the US and I just can’t stand the part that we want to go on vacation for a month but we told not to. We hang in there for 5 months so far and could of gone. My husband was in the hospital with a bacterial infection for 3 days. I dislike winter so we were hoping to go south no go.

[AyrshireK in reply to Wowz]

Sadly having to stay close to home is often part of the restriction that being 'on the list' brings. We had the same for 10 months just in case the call came, as we live rural with no mobile phone coverage we counldn't got that far at all and I had to post pone my work activities and voluntary work just in case the call came ........... I couldn't be off doing my thing if hubby was back at home like a headless chicken. Sadly, we couldn't even go and visit hubbies elderly father for some time either as he was down in England and us Scotland.

Can you not ask to be suspended from the list to allow you a break? In the UK you can ask to be suspended or indeed they might suspend you for short times if you have a cold or something which might stop t/p going ahead.

Obviously if the liver your hubby needs comes in during that time you are away then you've missed your chance and who knows if another will come before the need for it becomes more urgent. It's a risk you take or calculate "Is a holiday worth it to miss that potential gift of life renewed?"

Wishing you both all the best,

Katie

[Kate50 in reply to AyrshireK]

Morning, that is exactly what happened to me, my daughter attended university that was far away from home and was due to graduate when I was on the list, so we had the discussion about whether I should suspend myself from the list for a few days in order to see her graduate, in the end my daughter insisted that I didn’t just in case, and was just as well because that was when I got my call, and received my liver transplant, so I would say save the holidays for after, they will be so much more special 🌸🌸

[Wowz]

Thank you both for your response it helps allot to here these words to hang lose and wait for the gift of life.