What is your diary like?

[Emma7550]

It's my partner that's on the transplant list. But on average how many blood tests, doc appointments, hospital appointments do you have in a 2 week period? I'm lucky that my work place are understanding but I fear that understanding will run out eventually. This week blue box blood test in Wednesday, bloods for docs on Thursday, next Monday COVID test and assessment at hospital ready for Thursday (hospital is an hours drive away), Tuesday consultant appointment, Wednesday fingers crossed drain, Thursday camera down throat. My partner is getting so confused by all the appointments, I've given him a big diary. Still trying to get permission for me to speak to the local docs on his behalf!

[Emma7550]

Sorry I forgot to mention, my partner is no longer fit to drive and can only walk very small distances so is unable to get to these appointments without me. Taxis in our area are very unreliable.

[Hidden]

Sorry to hear you're both going through this and I understand your frustration and difficulties with the appointments. The difference being that we have our own business so had to arrange cover for me rather than ask for time off.I found appointments came in fits and starts. Sometimes a week as you describe and then a few weeks without an appointment or just one or two a week. It was worse in the early investigative stage and then later as he was being assessed for transplant.

Hopefully your bosses will be sympathetic and understanding.

Are you registered as his carer? That's the quickest and easiest way I found to get included in all appointments and discussions, and to speak to the GP about him. I also had to run him everywhere and accompany him as he wasn't strong or well enough to attend alone.

Wishing you all the best, K x

[Hidden]

Hi Emma7550 - could I suggest discussing your concerns with the transplant co-ordinators? I appreciate that taxis etc are not reliable but they may be able to assist with transport, or refer to social work etc. Best wishes

Trust10.

[Yellowsydney]

Hi, when I was on the transplant list I saw consultant in clinic monthly and had bloods same day, 4 years ago so pre covid at Addenbrookes which is 1 1/2 hours away. Endoscopy yearly as varicies were well banded, ultrasound every 6 months both of these at local hospital n&n. CT scan at Addenbrookes every 6 months which coordinators always tried to arrange on a clinic day. Talk to the coordinators and see if they can arrange things better explain the problems it is causing.

Good luck and hope his wait isn't too long, unfortunately the appointments continue after transplant weekly clinic visits for a while.

Hilary