After a month of test and waiting I heard yesterday I am on the transplant list at the QE Birmingham
This is the second time , and now the wait starts!
One of the hard bits even now is having to admit why we are not going on holiday, which is every ones opening comment at this time of year.
Good luck to all of us at this point
David
Good luck David. I am being activated on the Royal London list as soon as move/complete on our house. I reckon I'll be listed mid August. Keep us posted. Nicki x
How does one get themselves on a transplant list ? Just curious in case worse comes to worse . Here In America it seems like slim chances of being treated properly.
In the UK is down to the local consultant sending you to a specialist hospital, the one I was sent to was 60 miles away, then the treatment and monitoring starts until your condition either stabilises or you get to a situation that the only treatment is a transplant.
It took nearly 9 years until I got mine, the the states I have no experience, but for lots of people it never come to needing a transplant
David
Is it a hard question to answer because of the background to the need for the transplant? Or something else?
Hi David good luck with everything,there will be other holidays. Annette I have my assement date for 4th august have to be there four days haven't a clue what it entails still best thing for me deteriorated so fast anyway good luck again. Annette
I currently going through assessment at Kings, I know it may vary a bit between hospitals, but there is nothing to be nervous of.
I'm currently writing about my assessment On this board.
Deterioration is a double edged sword in my opinion, it's certainly gets everything moving, but I really want a transplant before my deterioration puts me in hospital..
Yes that's true been in hospital 4 times in 7 weeks with HE infections low hemoglobin lots of blood transfusions then acistes which came on in hospital drastically could hardly walk then went to see my heptologist at kings on 11th July got assessment date yesterday got nervous as things moving fast I should think myself lucky as lots of people been waiting ages thanks for advice
That all sounds horrible, I've been prioritised because my bloods are so bad, I waited 2 weeks from consultant visit, she gave that as a rough timescale anyway, then phone call at 18:30 Friday to come in that evening.
I guess everyone's case is different, I'm still a semi functioning human being and long may that continue.
I hope you don't end up back in before your assessment, I'm able to approach the assessment in pretty decent health, and for that I'm thankful.
The worst bit of the assessment I thought was the bike test. I had to do it twice as I did terrible the first time round (although they told me you couldn't fail I'm pretty sure I did!) it was difficult with muscle wastage and a heart problem! Xx
I failed that as well !
I could not breath after the second attempt
Hi David did failing bike test have any effect on your assessment
There is an alternative the nurses all understand
Also meeting others was helpful and made me cry in admiration.
The boy who was donating his liver to his father was amazing
No
They can also administer a drug by injection that does the same thing
That is what I had!
Didn't know there was alternative to the bike test. I was worried they were going to get me going up the stairs as they said I might of had to. No way would of managed that when I was ill. It's not to measure that kind of fitness but more to see how your heart reacts and recovers after physical activity to make sure it's strong enough to survive the operation. Xx
I did the bike test yesterday, it really isn't that bad, I really should have worn my trainers as I went in my slippers and did the test in my socks! I was an in patient hence the slippers!! They have a goal which is adjusted for each person, I'm have recently been quite fit and regularly exercising so I managed 13 mins, I felt I could have probably done a little more but then I'm a silly boy, they are looking at how your body responds to increased work, I'm 37, they would expect someone at say 57 to do the same, and let's be honest if your doing this for assessment then you are unwell! I certainly wasn't going to go silly and push till I passed out. The doctors were very happy with my result anyway. Just do what you can, and relax.
Transplant waiting list
On the list.... again or still?
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