Worriednewbegaynor

Hi on liver transplant list apparently need one urgently because of cirhossis due to auto immune disease although they think my few glasses of wine a night are also to blame . Weird thing is the better and less jaundice o am becoming I'm hanging on by a thread and without a transplant will not last much longer . I can't understand it any advice

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  • Hi Gaynor, welcome to the forum, sorry you have to join our merry band and are feeling so poorly. What is it you can't understand? I'll try and work through your post and see what points I can pick up and advise on.

    Ok so you are on the liver transplant list, has this come about quite rapidly? I guess so if it has taken you by surprise. The problem with auto-immune conditions of the liver is that they can be gnawing away at your liver for a long time before it starts to give off symptoms (my hubby is in a similar boat - diagnosed with cirrhosis due to Auto-Immune Hepatitis in April 2012 although no previous ill health and no sign of AIH now). Unlike yourself he has been tee-total for life so alcohol has played no factor in his condition. A glass of wine a night might not have affected a healthy liver but because yours was already under attack from an auto-immune illness the wine it was like pouring petrol on a bonfire - its a strong toxin and your liver was struggling already so the wine would have been harder for the liver to deal with and may have contributed to the rapid failing of your liver. (You were not to know this so no blame involved)

    How long have you been on the list? What symptoms do you have? The more poorly you are and the more symptoms you have will elevate you up the transplant list. My hubby was listed in June 2014 but after surgery which resulted in his spleen dying off his liver numbers miraculously recovered to near normal levels and he was actually delisted after 10 months though he is being kept under close watch for signs of deterioration again.

    He has no jaundice, no ascites and only minor HE symptoms. The more symptomatic you are and the more decompensated your liver is then obviously the more seriously poorly you are & the more urgently you need a new liver.

    Your transplant clinic appointments should only be a few weeks apart at which they will take a good look at you and take blood tests then the multi-disciplinary team and transplant co-ordinators will move you up or down the list as your need presents.

    When a liver becomes available they look at the donor liver blood group and body size then match it with the most poorly person on their list who matches both the blood group and body size then fingers crossed you get the call.

    You might be near the top of your given list if they are saying you are urgent so fingers crossed you won't have long to wait for your call.

    Hopefully you are keeping yourself as fit as possible (even a short walk each day if you can manage it will benefit you during the op and for recovery) and have your phone at hand and small grab bag packed (and arrangements made for getting to hospital etc).

    Fingers crossed your call comes soon, if you feel you need to find out more then ask away and someone will no doubt be able to give you some answers.

    All the best, Katie x

  • Katie, you really are amazing. Your knowledge is incredible!! xx

  • Isn't she just!!

  • Thanks for reply I really appreciate it x the only symptom I have now is assities I was very poorly from Jan this year and could have understood my desperate need for a transplant even though then I wasn't even on list now I'm at st James and feeling 90% better told I'm on top of list and need one desperately my next appointment is Jan 12 th. I can't fathom it and am feeling very down and pessimistic and my husband blames the wine even though he drinks like a fish and I never have I still feel quality but I take on board what u have said and it has helped make sense of it thanks again X

  • You are in good hands at St. James's, you are being kept a close eye on and it must be your blood results that are showing your urgent need. What blood group are you? If you are a rare blood group you can be at the top of your list even though you arn't as poorly as others (in a different group) just purely due to the rarity of your blood type. Ascites is a symptom of decompensated liver disease - my hubby was listed without any major symptoms other than portal hypertension with varices (although eradicated through repeated banding by time he was on list) and the minor HE. Because his AIH is burned out and has already done it's damage there is nothing more they can do to treat the cirrhosis. We've been told it's a question of when rather than if he'll need a TP further down the line.

    Your glass of wine a night was probably near on guideline limits so without knowing your liver was struggling you wouldn't have had a clue.

    Think positive and hopefully your call will come soon, all go to plan and you can join the happy band who are living life to the full post transplant (fingers crossed).

    If you are struggling to get your head round things, remember that your transplant team will have a psychologist as part of the team who might be able to help with this aspect of the condition. We saw ours at Edinburgh when hubby was struggling with the sudden onset of such serious ill health and the MASSIVE changes it brought about in his life.

    Best wishes. Katie xx

  • I think my scans and blood results have put me at top. My AID has fizzled out now I haven't drank for over a year but still liver has got worse 🤒 I am a good blood group A+ and I'm nervous about telling team worries in case they take me off list X my daughter is going through steps to being a living doner X thanks will keep u posted X thanks again

  • Pleased to read your husband much better . Think we talked some years ago; my daughter has AIH, was listed and then delisted as liver responsed well to meds. She was 16, now 21 and at uni. Yes she gets tired and always will but she is very determined to live her life to the fullest. Sees her fabulous consultant 3 monthly.

    Merry Christmas to you both. 🎄🎅🏼

  • Hi Gaynor, Im sorry to hear you have ended up on the list and the urgent one too, I hope you don't have to wait too long, I imagine you won't. I am also on the transplant list, I have been for about 6 weeks, I have blood cancer, liver cirrhosis and portal vein thrombosis.

    My advice is write down as many questions you have or can think of and get them answered, I have learnt that no question is a silly question and it is all relevant.

    Make sure your family have the options of asking questions too.

    For me this forum is like me right arm!!

    I wish you all the luck in the world xx

  • Thanks for replying feeling better already xx

  • Just had my liver transplant on Tuesday at st James i am in pain as is understandable so feel 120 years old lol

  • excellent news. Sorry that you feel rubbish, but in the long run you will feel better. Just take one day at a time, everyone handles and recovers different. get some good old sleep under your belt!! xx

  • Thanks good idea they are sending me home today so I'll bee on my own bed 💤bliss 💤

  • Wow, home already. 21 days ago you were posting with all your worries about being listed and here you are transplanted and on the baby steps to recovery. You must be doing a lot better than you think you are if you are homeward bound in under 7 days - WOW!!.

    Look after yourself Gaynor.

    All the very best to you.

    Katie xx

  • Hi, It''s wise advice to leave any alcohol alone , we have all struggled a little bit so hopefully you will see this through. Hang on in there and stay positive...

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