Decision Day Tomorrow!

[Kl61]

My other half was assessed for transplant 18 months ago, but was found to have issues with lungs so referred to have that treated before going onto list. Then 6 months ago developed blood clot in vein, so after a scan to check the size etc we are off to see transplant consultant tomorrow( not our local hospital ) to see if he will still be able to have transplant.

Has anyone else been turned down for transplant? And if so does your care then revert back to local gastro/ hepatologist, or do specialist team continue to see you?

[AyrshireK]

Sorry to hear of your wait and all the other issues.

My hubby was listed and then delisted after 10 months as he was actually deemed to be doing too well. We asked that he continued to be seen by the doctors at the transplant unit so he could be monitored going forwards by liver experts. He remained in transplant clinic for a bit but as we were seeing lots of different doctors and having no continuity of care he was taken out of transplant clinic and now sees the same liver doctor (although only 6 monthly). He still also sees a local gastroenterologist but it is acknowledged that this is just to keep local hospital in the loop in case of emergency local admission. Care is all masterminded from Edinburgh.

I know of another chap who was listed, then delisted owing to a stroke preventing him from having a trasnplant. He immediately reverted back to just the local hospital (same one as us). They didn't ask for continued care at Edinburgh (perhaps didn't realise they could). Sadly their story hasn't had a positive outcome.

If the decision is to not list, then request that hubby is still seen by the specialists at the transplant hospital. I know we have very little confidence in our local chap (can't even order 6 monthly routine scans) wouldn't trust him to be looking after hubby going forward.

All the best, Katie

[Kl61 in reply to AyrshireK]

Thanks for your reply. I too am concerned about local care, they just seem overwhelmed, appts cancelled etc and scans only when asked for. Transplant hospital much more efficient. If he is told no transplant tomorrow I will ask about continued care there.

[AyrshireK in reply to Kl61]

Do that and explain you want to be treated by the best, especially with concerns over local care.

Best wishes, Katie. xx