Transplant assessment

[Mywildlove]

Hi. My fiancé saw his GI today for a checkup. He said he’s concerned about his bilirubin spiking, then going down, then spiking. His meld is now 18, down from 28 when he was diagnosed in December. Hasn’t had a drop of booze since then so it’s been about 8 months. He feels great most of the time, he gets tired sometimes and he does deal with varices (no bursting knock on wood) and ascites that stays off with diuretics. Anyway, the GI is referring him for transplant assessment. Part of me is relieved and the rest of me feels sheer panic. Can anyone give any tips or encouragement about it please? I broke down in the doctors office when he said it, I thought my fiancé was doing so much better. He also got lactulose today for the first time. He usually has no problems but he’s been constipated for a couple days so the doctor said to take it as needed. The good news is, he doesn’t think it’s gross haha

[Popel]

Hi there I’m happy for you both but Know you’ll of been hoping that you would of been wanting to reverse his cirrosis. so you didn’t have to go down this path.but seeing as you are youll also know that having an assessment isn’t a guarantee of having a transplant.its just a referral from a GI consultant to people who’ll know exactly what state his liver is in.i myself stopped drinking six years ago at forty four but wasn’t able to reverse mine but your husband sounds like he’s stable for now. so fingers crossed for you both.its a stressful time for the both of you so stay strong and you’ll be fine.i know because Me and my partner have been there and it’s by no means easy now but for us and many it’s a way of having a future. Wish you well. paul

[Mywildlove in reply to Popel]

Hi Paul, thank you for replying. I am more scared of him not being approved for transplant than I am of him actually having a transplant. I told him today that we both have to quit smoking and he agrees. It’s gross, expensive, and killing us anyway. I don’t want that to be what gets him denied for the assessment.

How long did it take for things to turn around for you after you found out you were sick? I still have hope that things can improve more or we will go for the assessment and they will say he doesn’t need one.

[Mywildlove in reply to Mywildlove]

Wait I’m sorry. I misread your comment I think. You had a transplant?

[Popel in reply to Mywildlove]

Hi there again.had my last assessment in October.listed 22 November last year transplanted 22 feb.but was speechless when told I was listed still seems surreal.my consultant who referred me said I may be deemed to healthy to get a liver and also a consultant said something similar in the QE. but when my case was discussed it was a portal vein thrombosis that made them list me.but by the time they did I’d had four bleeds numerous bandings and was really poorly at the the time so you can imagine my and my partners relief when they listed me as I’d knew I was decompansated and it wasn’t going to heal.but it doesn’t mean your husbands won’t and they’ll know if it will or not.personally I’d of preferred not to have had one as it’s still been tough I won’t lie but the there wasn’t an alternative unfortunately .paul

[Popel in reply to Popel]

Ps hell soon start to despise lactulose I also liked it to begin with lol

[Mywildlove in reply to Popel]

I’m sorry you have had problems after transplant, I hope things get better for you!

I’m worried he will start to hate it too but he knows I would be pissed if he doesn’t take it haha

[ThreeSmiles in reply to Popel]

Hi Paul

I know what you mean - I guess all of us who have had a transplant would have PREFERRED not to have one but there isn’t any alternative mostly 😁. I think if you (one) haven’t had any issues post TP you would be one of the lucky few (from what I have seen on here). But - as Alfredthegreat keeps saying - we are still HERE 😁👍. Yippee 😁👍.

[Mywildlove in reply to ThreeSmiles]

That’s how my fiancé and I feel. We would love for him to be able to keep his liver but if he can’t, he can’t. We just want him to live and be able to be a grandpa one day. He’s so looking forward to that haha

[ThreeSmiles in reply to Mywildlove]

Hi wildy

I really hope he does get through the Assessment OK 👍. When I eventually got referred for an Assessment (it took a couple of years to get to that point) I would have got the flags out if I had had any 😁 and as for getting Listed after the Assessment well, cartwheels, handstands and lots of things came to mind lol - but since I could hardly walk coming to mind was all that could happen !!😁.

A few issuettes ongoing post TP but at least I get to be grandpa to six now 😁😁😁😁😁😁.

I hope it goes well - indeed great 👍 - for you both and that he does indeed have many happy grandpa moments!

Angus

[Treeclimber62]

I had a transplant just over 2 years ago it was caused by liver cancer as a result Of hep c and a fair bit of drinking .I can only speak for me but its not been.too bad I was in the qe for 5 days and then home to recover .I'm not saying its easy but its a lot better than the alternative .I'm back working now I'm 65 and I do tree surgery for a living so quite physical job with the right attitude you can overcome this the surgeons and medical staff are fantastic things will get better for you both best wisher

[Mywildlove in reply to Treeclimber62]

Wow, that is a very physical job! I’d say going from being very sick and poorly, not being able to move a lot because of the fluid and being tired, to being able to be that physical and living with some problems is well worth it ☺️ thank you so much for the encouragement, I hope the same for you!!

[Treeclimber62 in reply to Mywildlove]

Thanks you are welcome

[Hidden]

Hi,

You may find our information on transplant useful; britishlivertrust.org.uk/li...

We appreciate this is a very stressful time for you both and hope you will find support from our memebers.

Take care

Trust1

[Mywildlove in reply to Hidden]

Thank you so much Trust!