Feeling too well pre- transplant

[Paulwil]

I had my successful transplant last October for which I am extremely grateful for.

Hello all,

The history to my illness was alcoholic liver disease diagnosed in September 2016. My bloods improved over the next few months but in June 2017 it was decided to assess me for transplant as they were not improving further. I was listed in September 2017.

I have always been curious why I felt so well in the months leading up to my transplant, I even cycled 10 miles 2 days before. The only time I have asked this question I was told by a specialist nurse is that I was possibly listed in case I became unwell.

I suppose I feel guilty in hearing the stories of people struggling with their health up to transplant. I feel very lucky and fortunate.

I would be interested to hear your comments.

Best wishes

Paul

[Millie09]

Hi Paul, there must have been a reason as to why they transplanted, and i hope you are keeping well.

I was diagnosed with ALD cirrhosis in 2008, my bloods have been up and down as they do, but steady in the last 4 yrs. My fibro scan was 27 so stage f4 fibrosis.

I have very little energy, yet i have insomnia too, besides other health issues of osteopenia in my hip and two prolapsed discs middle to lower back so im not too good mobility wise.

I often wonder how long or if at all.i will ever be listed for transplant..maybe they're thinking age 55 if they keep me going just about another 10 yrs i won't have a transplant due to age..so dont feel any guilt at all.. its all swings and roundabouts with this disease. 🙄.. best wishes Linda

[Paulwil in reply to Millie09]

Thank you Linda.

I know there must be a reason.

I had also had a letter from Haemotology waiting for me when I got home from the hospital. It did say my results had improved and I was no longer anaemic, ALT normal and bilirubin had dropped from 120 to 50.

I hope you are listed soon. As I said before I massively grateful for this gift

Best wishes

Paul

[Millie09 in reply to Paulwil]

Your most welcome paul.. well only time will tell. Take care.. linda

[davianne in reply to Millie09]

Hi Linda, I was diagnosed with stage 4 Cirrhosis at the same time as Paul, and at 70 yrs old I don't think I will ever get offered a Transplant. You say 65 yrs cut off age. I have asked here before, but no one seems to know the official view.

David

[Millie09 in reply to davianne]

Hi David, sorry to hear that, to be honest im not sure myself what the cut off age is but in my eyes the younger you are the better chance you have of a transplant, i mean, who are they most likely to give one to ? A 20 plus or a 50 plus .🤔.. hope you are keeping well though.

Best wishes Linda

[davianne in reply to Millie09]

Hi Linda, I hope you are keeping well too. Your logic can't be faulted. I would feel guilty if I was given preference over a younger person. Anyway, I guess I've had my 3 score & 10 yrs already, and with the grace of God, I hope to enjoy a good few more.

David

[Millie09 in reply to davianne]

Hi david,

Yes exactly my thinking, not that i consider myself old as i still have lots i want to do but im restricted due to my cirrhosis side effects and mobility at present., i would love to see my grandchildren married or even.my 30yr old son lol, but we dont have any say in the matter.

Im not too bad thank you for asking, making the most of things regardless. Take care. Linda

[davianne in reply to Millie09]

Hi Linda, I have 8 grandchildren, and hope to see them married, although they are all over the globe, and if it happens, I hope I can get there. I have another appt with hepatologist in June, but this time, due to cutbacks, no endoscopy check, just bloods & US. We are never allowed to forget this disease, with all the side effects.

Take good care of yourself,

David

[Millie09 in reply to davianne]

Hi David! Aww. I have 6 , 3 boys and 3 girls the eldest is 19 in june and is at university, my youngest is 3 . Yes i bet you do ! And FINGERS crossed you will do. Oh so your not having the usual check up then? . I have been waiting 3 months for occupational therapy to assess my needs in the home. And still i wait .. i went to physio once and once Only as i was in absolute agony after with burning sensation down my left leg. My hepatologist is not untill October now.

Oh how can we ever forget. 🙄.. Take care .Linda

[davianne in reply to Millie09]

Hi Linda, WOW, that's a a bunch at your tender age !!!! I have 8, 6 girls & 2 boys. My eldest is Amber, aged 24, at Manchester Uni. youngest is William just 2, lives in Seattle. I think our NHS trust (South Bucks) is running out of money, hence no endoscopy. My wife used to be a Matron there before retirement, so I get inside info from her ex staff. I hope you get your Occy Assessment soon to help with your mobility.Sorry to hear of your left leg probs. Sounds similar to my trapped sciatic nerve. I get pain from lower back, hip, back of knee and down to my ankle (old rugby injury from 50 yrs ago. Feeling very tired today and trying to stay awake 'till bedtime.

Take care, David

[Millie09 in reply to davianne]

Hi David . Wow so you have a 24 yr old at uni ! And a 2yr old in USA! ..How cool is that! . My one grandson is 7 on Saturday bless. One of my daughters children.

Oh what a fab job your wife had , has its perks then i see .😁. Yes its all the same where i am , waiting and waiting etc.. to get things done.

Oh it can be very painful, osteopenia in my left hip and two prolapsed discs middle to lower. Physio is no good either. Tried to contact occ therapist today but got nowhere. Will try again tomorrow.

Take care david! .. linda

Oh i have to have a nap! Can't get through to bed time. Lol

[jojokarak]

Hi Paul congratulations.. 😊

And we are all different our bloods are the tell tale though and as tough as I felt the 5 years I suffered with cirrhosis and the amount of time I spent in hospital my bloods were either too well or too bad ...

I know a few people who didn't suffer with many symptoms but there bloods were awful and they had successful transplants 😊

[Hidden]

Hi love my hubby had transplant last Monday he’s had a resection 4 years ago and the cancer come back last year he had some embolization done and it killed the tumor . His consultant said he would eventually need a liver so went on list in September 2017 . He was really healthy gym each day etc . Just hope he will get back to his fitness now he’s had transplant . He’s been in icu for a week nearly and there going to do a tracker in his neck as they can’t bring him round while tube in mouth as he’s very agitated 😣 xxx hope u ok xx

[Paulwil in reply to Hidden]

I hope your husband is back in his feet soon

[Danisleigh]

My son (aged 16) also felt well pre transplant as although he was born with a liver disease it was a HCC which caused his transplant but it wasn’t causing him any health issues. It was weird going from living a normal life to being told he had cancer and being transplanted all within 3 weeks! He was transplanted on Feb 7th so is 3 months post transplant now and back to living his normal life! He was back to work and college after 7 weeks like nothing had happened! I think it’s notmal to feel like that about the transplant, I speak to parents of other sick kids on the waiting list who have been waiting for a few months and wonder why my son got his so fast but I think it’s natural to feel that way as you have compassion for what they are going through x

[Hidden]

Hi

Hope your hubby ok. You all take care Lynne xx