Yesterday we were at St James's Hospital, Mike signed the consent form for transplantation. In the meantime he will have ablation treatment on one of two liver tumours. The other they will monitor.
Because of a portal vein thrombosis he is a higher risk for the surgery, and we know the wait for transplant could be long.
Just have to keep moving forward, and hope like many others that a call comes through.
That's all good news, I was on the list for 18 months.
The wait can be hard but the call will come, for some its only a few weeks or even days!
Either way have faith be ready and try and carry on life, there is no magic answer I have to make it easier.
Other understanding the call will come!
Thank you David, I really hope the call does come. x
Hi there.congratulations im really pleased for you both.i also had a partly blocked portal vein thrombosis and there was a time that because of the extra risk I thought they wouldn’t accept me.it was such a worry for us.but in the end it was the reason they listed me.i was listed end of November and transplanted 22nd February.i had to live with the thrombosis for the last two years of my cirrhosis but wasn’t able to have thinners because of my low
Platelets.so it’ll happen thrombosis or not.just hang in there both of you.and I’m proof you can come through this.if you’ve been listed you shouldn’t hope you get one it’s a given your husband will get one.wish you both the best of luck.paul. Ps. I’ve mentioned in other posts that every day I was thinking about them calling to say come in we have one.they rung me one thirty in the morning and it was the thirst night that I didn’t give them ringing a second thought. So typical!
Hi, congratulations in being on the transplant list, I had my transplant 23 months and 3weeks ago!! I had portal vein thrombosis had to take blood thinners, deltaparin injections for the year before transplant, also had low platelet count and ended up bleeding from all over, tongue, cheeks, arms ,legs. On the day of transplant I had to have a ct scan and wait for the surgeon to decide if he was prepared to operate as my portal vein was completely blocked, he said yes but I was told another 2weeks and he wouldn't have done it. I was on the list 8months. They will keep an eye on the pvt. Good luck, stay strong .
Hilary💚💚
Thanks Hilary! Messages like yours are so helpful. I'm very grateful of your reply. x
Been there, had that, still here. Hello Remainer,
Try and remain positive. Firstly you are in the right place, and Mike is in good hands. I had two tumours burnt off using the Radio-Frequency Ablation procedure. This is normally carried out by an anaesthetist. Mine was done down at the QE Birmingham. The have produced a publication about the procedure which maybe of help: uhb.nhs.uk/Downloads/pdf/Pi...
At the time of carrying out this procedure they will take a sample of the tumour before they destroy it. This is so they can determine if the tumours are benign or malignant. The procedure will involve an overnight stay in hospital. Once these little tumours start to grow, then a transplant is really the only option. I had five tumours in total, but only two were at the right size, the other three needed to grow bigger before this procedure could be repeated.
I was most fortunate, I went on the transplant waiting list about six months after this procedure was carried out. I had my transplant just 9-days after going on the list. I know that some people have to wait many months, but please be reassured that St James will be monitoring your progress and watching those remaining tumours.
Just remain positive. It will happen.
Thank you Richard! Mike has had two hcc's before the ones he has now. He's had radio frequency and microwave ablations, and one tace treatment for the previous tumours. It's encouraging to know how well you got through it, and that your wait wasn't for long. I hope we have similar results. Thanks again. x
Hi. Congratulations. Great that you are on the list. I too had 2 sessions of TACE for 2 tumours and I also had portal vein thrombosis. I was on the list for 10 weeks when I got my call. Hope your call comes very soon. Best wishes. Alf
Thank you, it's my husband Mike whose on the list. It's encouraging to hear the wait for you was only 10 weeks, we've been told it's likely to be a prolonged wait for transplantation. This is because of the thrombosis, the type of graft he would need and the relatively low priority
that is given to people with HCC by the transplant offering scheme.
I hope that the wait isn't too long for us, but not getting hopes up too high.
Really pleased for you, and thanks for replying. x
I was told that my HCC and Meld score gave me some priority. Do you know how many are on your list?
No, we don't know unfortunately.
Was hoping that the HCC's gave some priority, but appreciate there are many others who also need a transplant.
They definitely gave priority for HCC at my transplant hospital. Hope that packed bag isn't waiting there long. All the very best to you both. Alf
Thanks Alf. Think I've been a bit thick when you asked about which list Mike is on, you mean the donor liver type? It would need to be dbd, and a massive thank you to all who donate organs.
Mine was the same criteria. That call can come at any time and usually when you are least expecting it, Mine was 1am Sunday morning August bank holiday.
👍 Thanks Alf.
Great news! Realised that I'd already posted and so edited. Senior moment, LOL
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