Progress?

[Starlight79]

Good morning, not really after any advice just some thoughts from you lovely people. Basically in Oct ‘23 I had a massive variceal bleed, 6l blood transfusion and a 9% survival rate, very jaundice, lost over 3 stone bringing me to just under 6 stone, progonsees liver failure, put on a transplant list with monthly bloods and hepatology appointments. I’ve worked super hard to excercise, eat well, naturally no drinking, sober free since July last year. Weight has come back, no longer yellow, sleeping well, back at work. Lots of tummy issues with cramps and excess wind but I’m told nothing to worry about. I went for a check up yesterday pre hepatology appointment and they checked my bloods. All looking really good, sodium, hemaglobin, kidney all normal range as before to they were all over the place. Just my bilirubin still high, it was 145 and is now down to 69 but still a concern for me. Is this likely to still require a transplant? I think because I feel well I’m deluding myself that I’m all better again? Sorry it’s long one, thanks if you read this far. Happy Easter to you all xx

[AyrshireK]

It sounds like you have made excellent progress and your liver has stabilized.

They may at some point decide that you currently don't need a transplant and delist you - you might not meet criteria re. the blood calculation (UKELD score) that they use for listing with stable bloods plus they might decide that transplant has the potential risk to take away the health you now have. That's what happened to my hubby back in 2015 after 10 months on t/p list. After that they kept a good watch on him as they always said he would need a t/p in the future and that has proven correct as a sudden deterioration in his health at the back end of last year has led us back to t/p assessment and listing - there won't be any bouncing back this time and we are just hopeful that he'll get his new liver in time.

Keep up the good work. Hubby had what we realise was golden time for the 9 years he was off the list, going walking, caravan holidays, cycling etc.

Katie

[Starlight79 in reply to AyrshireK]

thank you Katie, I really appreciate you taking the time to message, I know you have a lot going on with your husband, I have been following your story and the wobblebox trips! You are such an amazing person supporting your husband the way you do, I’m lucky my husband is a huge support and it means the world to have someone in your corner. Hope you are keeping as well as you can. How’s your husband? Thanks again xxx

[AyrshireK in reply to Starlight79]

Thanks for your kind thoughts, hubby not good sadly, sleeping lots, no energy, very frequently befuddled and needs help now with every basic task - bathing, dressing and even help with toiletting. Getting nauseous when travelling so not even managing a wee trip out. Things arn't good and we just hope we don't have too long a wait. I've only been able to get out when my parents come down around once a week, my dad sits with hubby and mum and I go out to do essential shop.

Going to get myself an exercise bike to keep cycling cos with comfort eating and zero exercise I'll be storing up potential health problems of my own. Hubby just can't be left alone - at 6.30 this morning he buzzed me through to his room asking if we could take out his n/g feed tube so I guess we are in for a befuddled HE day.

Katie

[Starlight79 in reply to AyrshireK]

oh bless you lovely lady, look after yourself as you are doing, you are amazing. Lots of love and hugs to you both xxx

[Meanies in reply to AyrshireK]

Kate I hope your husband makes a full recovery, I will keep you and your family in my prayers.

[Meanies]

Good morning.

Your post is the exact same as me every detail , I’m 37 because it was alcohol related they wouldn’t offer me a transplant. Though like yourself I worked my butt off and I’m still doing so. After 18 months of hard work they decided that they would consider transplant. So from November 2023 I started doing the transplant tests to see were I’m at and I’m waiting to be told wether I will be on the list or not. I’m scared I will lose the health I have now also, I’m meeting at doctor from kings in London in the royal Belfast in a few weeks so I should know more.

[Starlight79 in reply to Meanies]

Good morning. Thanks for taking the time to reply. My initial consultation with the heotology team referred me straight away to Cambridge hospital who perform liver transplants. At the time I was like just give me the transplant but at every monthly appointment I’ve been to it’s been left for another month and another and then 3 months which is great as there is progress and I’m happy not to have the transplant now. I guess I’m just scared of regressing and then starting the process again. It’s the just not knowing isn’t it? I hope things go well for you at your next appointment. Well done with all your hard work, it’s a challenge isn’t it but worth it. Lots of love and hugs xx keep me posted how you get on xx

[Meanies in reply to Starlight79]

Yes it’s a real challenge and I feel the same as you scared to get it now especially as there seems to be loads of complications after going from other sites I’m on. I will and you also. My bilirubin was 45 on last check believe it or not it was ranging in 500 at my worst that’s what letter says anyway xxx

[Yellowsydney]

Hi, I was in your position, only found out I had liver problems after a massive variceal bleed, lost nearly all the blood in my body, woke up 3 days later to be told I'd had a stroke but it could of been worse. Diagnosed with NASH cirrhosis after a few years and advised I needed a transplant. I never felt ill, bloods ok apart from platelets and inr, I had to be convinced by several doctors to go on the transplant list, when I had my transplant I was told I was within 2 weeks of being inoperable and only had months to live, my liver was very shrunken and extremely cirrhotic. Talk to your consultant and take their advice, if they think you should be on the transplant list then they will decide, I was told they wouldn't be wasting all this time and money on me if it wasn't absolutely necessary. If your liver is damaged by cirrhosis it will not recover however well you feel.

If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called 'liver transplant support uk ' thousands of people that have been in your situation

Hilary x

[Starlight79 in reply to Yellowsydney]

thank you very much Hilary, I appreciate you taking the time to reply. You sound like you’ve had a scary time and I hope you are now recovering well? You are right, it’s out of my hands to a certain extent and if it needs to be a transplant so be it, I guess I need to be thankful it’s an option. I’ll definitely join the group. Thank you once again x

[looby24]

Hello Starlight. We are going through similar thought process with my husband. It all started last summer with a variceal bleed, mild ascites and portal vein thrombosis. Nothing much has happened since then, just been on meds and all seems really stable. He always felt well. We were also slowly going through the process of assessment for a transplant primarily I believe due to the portal vein thrombosis but also, I guess, due to the decompensated issues. Meld score has been 13 for 6 months. However at the first gastroscopy appointment since the one that was done after the initial bleed, they have now found new varices that will need banded. We are keeping positive but it's been a bit of a blow and a stark reminder that things can change at any time. Ultrasounds have indicated that his portal flow is not bad but I think they must surely need an MRI to be sure, and he has not had one of those since he was sick initially, 7 months ago. My husband is 68 and has been told that he could be offered a transplant until the age of 76. But maybe in a few years' time that will change. My husband had kind of convinced himself that he would not need a transplant but that the option would be there if he did. Hopefully these new varices will be the last to arise - fingers crossed and we can go back into the space of stable numbers....

Wishing you all the best

[Starlight79 in reply to looby24]

thank you for sharing, it certainly is a rollercoaster ride. I hope the banding works and your husband starts to improve again and you can get back to some kind or ‘ normality’ all the best x