Hi happened to my wife again got the call before 5 in the morning 'we have a liver get here now' daughter drove here to Addenbrooks as I am away at work they got there at 6:30 and sat there until 5 in the afternoon to be told sorry it is no good go home.
This is the third time I know they do not want to give a liver that is not top notch but the wife is getting stressed.
We wait again
Dave
Oh my how frustrating. Don't know how you all cope. I never realised that this could happen. Isn't there anything they could do to test the liver before giving you the call ?
Hi from what I have been told but others on here will know for sure the time frame from removal to transplant is limited, so they get you there and all ready so as soon as they find the liver is good they can get it straight in
Yes I think that's pretty much it. There's preparation work done but the surgeon makes the final call. And sometimes the liver is coming from another hospital so the patient and liver have to arrive in parallel.
When you get the call, and even when it's a false alarm you know you're up at the top of the list. It really shouldn't be long now.
I really hope so she is getting a bit down no energy and bad arm and leg tremors so the sooner the better
I think this is the best message to take away from this experience. You are near or at the top so hang in there.
Oh dear Dave that is so unfortunate and frustrating for you both, but as you say it has to be right They give you the call with all best intentions of of going ahead with the transplant but 3 tmes been cancelled is very hard fot you both.
Keep strong were always here to talk / listen to you
Chris
I know its frustrating , I know someone called to Kings, and got told no the liver was no good. Only on final test they found it was 60% fat, so it is with good reason they say no. I am sure the medical staff as wel as yourselves find it frustrating.
Dave, I'm so so very sorry. Of course you want her to have the best liver, but this must be so stressful. Is Mr. butler your surgeon? Did they give a reason? I'm sure they did, sorry. It's the waiting that kills you. How long has she been on the list?
For me, they almost did not transplant because they found a clot somewhere in the donors body, but Butler said it looked ok. Now, they have found small clots in the new portal vein, and I'm on injection blood thinners, thinners for rest of life. They also think it's what is causing the ascites to have come back. I'm getting drained again and there's fluid in my belly and legs. I only say all that because the healthiest liver really is the one you want.
I guess for me, I'm just so grateful for the consultants and the whole team up there. I've been with them now for nearly three years, and they are so good. I'm glad your wife is getting the very best care.
I'm just so sorry about the wait.
Is she terribly I'll right now? How is she feeling?
Thinking of you both, as I know being her caregiver must be so very tough also..I still don't know how my darling lad did it and still does!
Cheering you on!
Kimberly
Hi many thanks for your reply her doctor is Dr Alinson at Addenbrooks she has only been on the list 3 months and this is the third attempt but we wait and the right one will come along.
She is not too bad no energy and arm and leg tremors but could be a lot worse so we are thankful for that
Nods, Doc Alinson is one of my consultants also! He's very nice! Very. But sometimes I'll go to Gelson or Leithead if I wasn't specific medical answers. I think I frustrate Dr. Alinson sometimes..lolol.
Three months, and that many calls? Wow! Well, your at the top of list..that's for sure. I was on for 3.5 months.
Everytime the phone rings, you both must just want to scream.
I didn't have tremors. I had massive ascites.. But I was sooooo exhausted, and a lot of pain. Out of house I had to use wheel chair. I stopped eating too, no appetite. Is your love still eating? May I ask what the tremors are from?
The good news is this, after the surgery, the care is so so good! The transplant wards have the very best nurses, specialists and consultants. They are prepared for anything. And they are so kind! I was in for four weeks after, and I could not believe the Care I got! I'm so grateful!
When I asked about the doc, I meant the surgeon? You would see him when you got called. They normally come to see you when you get there.
You go to clinic 12?
I go there still. In fact, I'm there Monday, for appointment and an ascites drain. I was lucky, while I was in hospital I made friends with three others liver patients! We still remain close! It's fun seeing them in after clinic too!
Good luck. And God speed! I'm sure your both anxious for her new life to start!
Xxx
Kimberly
So sorry y'all are you through this. I didn't realize it could go this way, but I will be lifting your wife to be at peace as she waits and that y'all will recieve good news soon with no further delays. 💐
Blessings,
~W2R
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