Transplant. Illness. Feeling Ok. - British Liver Trust

British Liver Trust

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Transplant. Illness. Feeling Ok.

cammeag profile image
11 Replies

Hi guys. You’ve probably seen my posts in the past.

I had liver failure in April 2019 and this resulted in decompensated liver, encephalitis and extensive ascites/odema. They said first three days are life and death. Now is now. My mobility is limited and with the help of my God I came through eleven o this of hell. I won’t bore you with details.

Now I feel well. Next ultrasound is in July. Apparently my liver is not sick enough, it will be eventually, for a liver transplant.

Anyone else felt really well even though their state of health according to hospital is precarious to say the least. I’m sorry to post this as so many suffering at mo, but I do try to help them.

Have as good a day as you can!!

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cammeag
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11 Replies
AyrshireK profile image
AyrshireK

Having cirrhosis can be a bit like a roller coaster, you can get periods of stability and feeling well and at other times feel more poorly - it's just the way it goes. What are your current symptoms? You were obviously very poorly at one stage with decompensated symptoms - is it possible your liver is now compensated and you are doing that bit better?

My hubby was diagnosed with decompensated cirrhosis April 2012, assessed and listed for transplant June 2014 but delisted again after 10 months because his liver condition stabilized and he no longer met the criteria for transplant. 2020 still ticking along - compensated cirrhosis. Monitoring this year has gone completely out of the window with covid situation. No 6 monthly ultrasound (should have been February but doctor didn't order in time so it was then booked for April which obviously took us into the lockdown & no appointment, no annual endoscopy or consultation at liver unit as this was due first week in June).

Katie

cammeag profile image
cammeag in reply toAyrshireK

Katie it sounds like a real result for your husband. I know I can never be fully well and to hope my liver could become compensated has never been something I have ever been told. I hope your both well and results when done, are as good as previous. All the best, David.

Good afternoon cammeag,

I am glad to hear you are feeling well. Taking care of yourself , abstaining from alcohol, eating a good healthy diet and exercise can all help to maintain or improve long term liver well being.

I hope all goes well with your Ultrasound scan in July.

Take care,

Trust9

Paulwil profile image
Paulwil

I spent 6 weeks in hospital following a severe GI bleed, liver failure and all the associated problems.

I recovered quite quickly when I got home, after a few months I felt well and I gained weight and muscle mass.

I was put on the transplant list 11 months later.

I kind of got swept along with all the appointments and assessments I had.

It must sound stupid but I never really asked in any detail how Ill I was. Perhaps I was frightened.

I have always been curious how I was able to cycle 20 miles the day before my transplant.

I felt very well up to my transplant and had no visible symptoms.

All the best

Paul

cammeag profile image
cammeag in reply toPaulwil

I think if I had been that well Paul I would have wanted my transplant postponed as there’s a high risk associated. I think only 40% fully recover, I’m probably wrong there.

Anyway good to know your doing well. Hope your spending your time looking after those less fortunate 👌

Huggy7614 profile image
Huggy7614

I never knew how Ill I was until after transplant!! I thought I was fine, still working, doing a physical job, (although I was having to take more days off), and when I went for first visit to qehb the doctor said instantly that it’s time for transplant!!! That shocked my partner and me!!

Days after transplant, once the morphine was stopped, I suddenly realised how rubbish I’d been. Life just gets better now a year on.....(forget about the shielding side!!)

cammeag profile image
cammeag in reply toHuggy7614

I’m very pleased it worked out for you.

Yellowsydney profile image
Yellowsydney

Hi, never felt ill, first and only symptom of liver disease I had was vomiting up nearly all the blood in my body, so much it caused a stroke. After this it was several years before I was finally diagnosed with NASH and 6 years before doctors said I needed a transplant. It took several consultants to persuade me to go ahead with transplant. I felt absolutely find the day I walked into hospital for my transplant.

hope you stay well, eat well, keep exercising.

Hilary

cammeag profile image
cammeag

Thank you Hilary. It’s a frightening prospect facing such a dangerous operation but the benefits are massive it seems. I’m glad you are well

David

1football profile image
1football

Hi

I didn’t realise how ill I was when I hurt my knee in the garden,after numerous visits to the GP regards the swelling she decided to do a full blood test and something (her words) wasn’t quite right with my liver so an ultrasound was booked and again something isn’t right with my liver so they sent my file to addenbrookes, when the subsequent appt came through & more tests/scans were done I was told I had Hep C,cirrhosis,and HCC well to say I was stunned is a understatement,they cleared the Hep C and tried different treatments to treat the cancer but unfortunately it cane back but through all of this i was working and keeping fit, then 15 months after original appt I was lucky enough to be offered to go on the transplant list,when I got the call 17 months after going on list I was still working, drove to addenbrookes,walked into the theatre and popped myself on the table.

I look back on this and still find the whole journey incredible, I really didn’t feel unwell until I got my gift and life is so different, it just goes to show how much we are all different I certainly realise how lucky I am as there are lots on here who have gone through incredibly hard times and still do

Huw

cammeag profile image
cammeag

One word Huw...WOW!!

Thank goodness for that knee injury eh. My consultant not even put me on list yet so I may not be salvageable...keep healthy bud

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