Has Anyone been refused transplant

Hello Again,

My dad is due to go for his referral to Kings shortly, I was wondering if anyone has been refused transplant for any other reasons apart from Cancer? I am sure that I am worrying without need but I also wondered if there is any appeal system which would work? I understand that most appeals are heard at Kings anyway as they take on the harder operations?

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  • Hi unfortunately yes my husband was told his age and that because he has O level group blood by the time he would get one he would be to old to go through the op being 72 just he is at a stage with ascites where he could be looking to get one but it is not going to happen so we plod on hoping for new trials to come up. But there are a lot of people who are getting them and hopefully your dad will be lucky I wish you all the best for the future and all goes well. If there is anyone out there been in the situation as us would love to hear from you.

  • Having cancer is not a reason for being refused a transplant although it does depend on the size of the tumour. Other reasons, however, include continued alcohol usage, capacity to withstand operation, other health conditions that would impact on survival. All transplant centres work to nationally agreed criteria, as far as I know. Not sure about appeals - not heard or read about them.

  • Hi, if you do not agree with the decision following the assessment you are entitled to a second opinion from another Liver Unit, kind regards

  • Hi, I wasn't technically refused per say, but after the first assessment I was told my heart wouldn't be strong enough to go through the operation. I then agreed to a procedure to try and strengthen my heart and some blood for the anemia. Second time round with (I was an inpatient throughout) I did well enough to go on the list, although they got close to suspending me from it when I got an infection.. But that turned out to be an infection in the liver. I know they can refuse due to age or being too ill (if illness not to do with liver) , but there are second chances and I saw it with other people whilst I was in hospital (I was in hospital for 7/8 months) good luck for your father xx

  • I have been refused because the team decided I was a high risk of relapse, I have been sober for 21 months and have endured every test required which I passed with no problems. I don't understand how they could refuse me when I have fought so hard and I have signed up for one on one counceling and a aftercare program. Don't know what more I can do, does anybody have any ideas how I can get this decision reversed, feeling totally defeated.

  • What is your state of health just now? Have you recently asked the question as to whether or not the decision might be reconsidered? There is also the option of going for a second opinion at another transplant centre where you'd go throught the whole assessment process again. You have done brilliantly in your sobriety and from the post above you present as a person who is committed to life long abstinence, however, I don't know you or your history and what the T/P team have seen to say no.

    I would definitely be asking again if your health seems to be deteriorating to a situation where you will need transplant as your only option for treatment.

    All the best, Katie x

  • Hi I'm from Toronto, Ontario and there is not alot of options for getting assessed by another team of doctors. I know that they must be making their decision based on my history because they don't know me well enough after talking to me for a hour. My problem is that I have changed so much since dealing with the discease and never want that life back again. I think of alcohol as a poison and never want to filter that through my body ever again. My son who has lost 2 of the best years of his life being only 25 and has been my full-time caregiver and is willing to be a living donor if a match. My son and daughter have already watched their Father die of cancer which is when my alcohol abuse escalated. I would never dishonor him by returning to drinking again and that goes for any donor living or deceased. Extremely frustrating!

  • Sounds like you are determined to me, I wonder if you put your thoughts and such like in writing it would have any sway.

    In UK we do have the option to appeal to a 2nd centre hence my earlier suggestion. I'd definitely push for a reconsideration of their decision. In UK it's a proven 6 month period of abstinence (minimum) before consideration for assessment and alcohol users do have to jump through hoops to prove they are committed to life long abstinence - counselling, involvement of psychologist on T/P team etc.

    Wishing you the very, very best of luck.

    Katie

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