Team 1

[Dotandken]

Just had a call from my local hospital to say that I am being put on hold for transplant, I should feel great but my head is all over the place!

[AyrshireK]

What's the reason for that? Is it a general thing i.e. is the transplant system being slowed down with covid situation? or something personal that would prevent you having t/p just now.

Katie

[Dotandken in reply to AyrshireK]

Apparently it's because I have stabilized, possibly recompensated slightly, which I know is great, but I was only brought in for a transplant two weeks ago, so just feeling a bit deflated neither here nor there!

[AyrshireK in reply to Dotandken]

Strange one, like you say having only been in for potential transplant two weeks ago & you must have been high up on list then to get a call. It would be great news if it were a genuine improvement in your health to that degree but as you know yourself you'll be up and down all the time. Have you rang the t/p co-ordinators at all for confirmation?

My hubby was delisted after 10 months waiting because he had stabilized but he was never anywhere near getting a call - we were told he was only 'borderline' when he was put on the list. 5 years on still stable. The decision for delisting was discussed at MDT and we had been given the heads up that it would likely be the case at the t/p clinic preceding the meeting & then got the call from t/p co-ordinator confirming the delisting.

If I were you i'd be giving t/p unit a ring to confirm.

Katie

[Dotandken in reply to AyrshireK]

Thank you I will do that. X

[AyrshireK in reply to Dotandken]

Did you get any joy from t/p co-ordinators regarding the situation?

Katie

[Dotandken in reply to AyrshireK]

Yes, as below, feeling a bit more positive now, thanks for your empathy. X

[Hidden]

Hi,

Can you contact your transplant coordinators for more information?

[Dotandken in reply to Hidden]

I spoke to the transplant coordinator earlier, and she said that a lot of my bloods, scan and recent endoscopy have shown an improvement, so with covid being prevalent at the moment, I would be at more risk having transplant than not . But they won't remove me from list. So thanks all, for your advice and input! X

[AyrshireK in reply to Dotandken]

That's good, obviously feel you have more waiting time available to you so not top priority just now with Covid still very much at the fore. Perhaps if your perfect match liver still arrived and you still top that list you'll maybe still get the call. Sounds better than what local hospital told you yesterday. Definitely more Covid at play here than such a huge stabilization in your condition.

Wishing you all the very best and hope when it is safer you'll get your call. In the mean time carry on looking after yourself and keeping as fit as you can.

Katie xx