I have been suffering liver cirrhosis for 5 years now and been off the transfer list for nearly 3 years, today visit to the Queen Elizabeth Birmingham for my check up the process may be starting again.
The talk is of a review and then re assessment for a transfer as my condition is slowly worsening.
After years wait last time and aborted admissions where the livers were not suitable I know what to expect.
I am writing this to help me get lifted again and get myself ready if the decision due in the next two weeks is to start the process again, I know there a lots of people worse off than me but am finding this news hard to bear
Still whatever fate has planned for me I have a great wife who supports me in every way and it will mean I write more on this forum!!
Every step on your path will make you stronger. Take the support of your dear wife. Focus on you both. Talk lots, laugh lots, share lots. Your strength is there.
It's only natural to feel so low - even though you know the process but as you say - you have a lovely wife by your side. And do as you have been asked by White-feather - this is sound advice... We can all become so engrossed in the processes and procedures that life almost becomes mechanical.
My partner is going through the first steps of transplant analysis. Whatever the outcome we will (hopefully) remain positive. Really hope you can too . Your wife is obviously a very strong person & I'm hoping that I have that strength.
Be strong both of you it's the start of a new journey. Forget the last happenings and now be positive, be strong for each other get on the list and hopefully not long to getting the right match 1st time
Another stage in a long journey, take it step by step. Support each other & also accept support from QE transplant team, who are wonderful (but I am bias as had mine there, am sure all are), also support from family & friends. Take time to be yourselves & to the best of your ability do normal things together.
It's hard to have faith, find hope...more than that, find the willingness to go through the process again.
Only you know if it's something your ready to deal with.
But..I would say this, and please, forgive my awkward wording,
But, there is something to be said about meditation. And about viewing the world anew again.
After all, it's spring..a time for new beginnings, no matter what life philosophy you follow.
Look around you. For me, it was desperately wanting to survive to see my first grandson turn one..which he has, four months after my transplant.
The other day he called me Nana. I can't tell you what that felt like. How glad I was that I decided to fight.
I also felt people were far sicker than I, and deserved to be treated first. In fact, one month before I got my transplant I was told I was far down the list because all my blood tests were golden, even though my ascites had become so bad I was being drained every ten days.
And remember David..part of being chronically ill IS depression. And exhaustion. I think it makes us view the world differently. We're so very tired, of being sick and the whole process.
Finally..if your getting sick again, a new liver can save your life..but not only that, it can give you a life again. Something to look forward too, everyday.
Cheering you on and thinking only good thoughts for you!
Hello, so sorry to know what you are going through. It can't be easy going back on the transplant list and enduring that wait for a donor. Also bring chronically ill doesn't help either as it affects your everyday life.
You are right to feel so down but know that at the end of all of this there will be light and happiness. You will be able to claim your life back again. In the mean time perhaps make a list of what you'd like to do once you receive the gift of life.
I feel for you, this must be so tough. I wish you all the strength and good wishes to get through this! My mum is about to start on this journey - she's just received a letter from QEB for her initial appointment, following diagnosis of cirrhosis in November last year. Not knowing what's in store over the coming months is scary, so I do feel for you!
Good luck!
Keep on asking on this forum the wealth of information and understanding is amazing.
I may well see her there!
More news, the call for assessment came today so its the 16th May at the qe2 and I hope back on the list.
Anyone else there that day?
Any one know of a god bed and breakfast to stay nearby?
Now busy cancelling every thing and the case is on the bed!
Best wishes for it David, hopefully following your re-listing you don't have as long a wait as last time and hopefully all comes to fruitition successfully for you. As you know we too are at the listed, delisted (after 10 months) and now waiting to see what happens again stage.
I think my mum's got an appointment for the 16th May (or might be sometime that week) at QEB for the second part of her assessment. I'm debating whether to rough it at Nuffield House if there's availability, or look at nearby hotels. Think I'd prefer to grin and bear the Nuffield House, as I'm not a fan of driving around Birmingham!
I wish you well, the on and off is hard, so is the waiting
My thoughts are with you
David
Hi David,
You could ask to stay at Nuffield house which is the old nurses residential home but the facilities are rather lacking with an ancient bathroom/shower down the end of the corridor and a couple of toilets (no ensuite) again, down the end of the corridor. It's clean though and has the feel of a youth hostel about it. At about 25-30 pounds, it's very close to the QE and has parking. If you'd rather not rough it, I think there's a premier Inn nearby. The hospital will give you a guest house list on request.
I wish you all the best for your assessment on the 16th David. Lots of tests on the first day. I found the heart scan the most uncomfortable as you have to lie in awkward positions for long moments while the guy climbs all over you with a scanner. The second day can be worrying, waiting to see the surgeons etc.
The staff are brilliant and are adept at putting you at ease and well informed.
Please let us know how you get on, I'll be thinking of you.
Mike
Thanks for that
We have stayed at Nuffield house and as you said its a little in need of maintenance
Good idea to ask at the hospital on he assessment days
Thank you for you god wishes it really is appreciated
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Cirrhosis - Not too sure where to go from here..
On my feet again, all organs relaxed.
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