Afraid there won't be a liver for me when time - PBC Foundation

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Afraid there won't be a liver for me when time

tama profile image
tama
7 Replies

I have had pbc for about 2 yrs, was stage 3 when diagnosed, i now have cirrhosis which i probably have had for about a year. My#are a little high but not over concerning, my problem is im afraid when it's time for a transplant there won't be one for me. They tools me at my age i would probably have to have a transplant at some point, does anybody else worry about this?

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tama profile image
tama
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7 Replies
jane1964 profile image
jane1964

Hello Tama,

I am 52 diagnosed for 7 years, recently diagnosed with cirrhosis.I had a MRI scan if my liver as part of a trial and know it's pretty badly damaged I also worry about the future and what will happen it's hard,no one not in this situation understands.My family try it's hard on them too.I am in UK and on the day I was diagnosed I saw a junior doctor not the consultant so I haven't been able to ask him about this.I am angry about this and have to wait 6 months to see him again.

At 52 there's a world of difference between living 10 years or 20.!I want to be able to retire see my children settled and maybe one-day hold a grandchild, who knows if I will.So yes I definitely feel like you, good luck to you, I still hope science my find better answers for us all.Jane.

Brummi profile image
Brummi

Stay on the positive side, folk on here have lived with PBC for years..

Jackie71 profile image
Jackie71

Diagnosed 6 years now biopsy at start showed stage 4 damage and it is now cirrhosis and yes I do worry about transplant, not that they won't have liver but more that I won't be eligible at the right time. My understanding is if you are relatively well, which I am, then you won't get on the list however you have to be under the magic age barrier for them to perform a transplant; so you just have to live each day and hope for the best but it isn't easy and I don't believe that any of us don't have a little bit of depression though having PBC but it is one of those things that we just have to push through and be as positive as we can for all those around us.

Jlruggie profile image
Jlruggie in reply toJackie71

What's the age for liver transplant?

CathieG profile image
CathieG

What's the magic age limit? I'm 64 and taking life as it comes.

Jackie71 profile image
Jackie71 in reply toCathieG

In my case I was told between 65-70 if you were well enough, they like to think that you would get 10 years use from a liver transplant, but I presume that it depends where you live this was Addenbrookes, Cambridge

Jackie71 profile image
Jackie71 in reply toCathieG

I'm 59 this year and was told between 65 and 70, they want you to get 10 years from a liver transplant and also it depends on your health at the time. I hope I just carry on like I am at the moment. Different areas must differ this was Addenbrookes, Cambridge.

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