Forgotten

[Gingerlad73]

I’m in on the transplant waiting list and really feel I’ve been forgotten.

[AyrshireK]

Are you still getting/going to transplant clinic appointments for your blood tests that gauge level of need?

Katie

[Gingerlad73 in reply to AyrshireK]

I’ve had one outpatient appointment, but have been admitted twice due to deterioration/infection. I’ve got a waiting clinic appointment soon, the first since I went on the list in July

[AyrshireK in reply to Gingerlad73]

That is a long time to have not been seen in actual transplant clinic - I know it was well before covid but my hubby went at least every 2 months when he was on the list. When you were admitted due to deterioration/infection was this to transplant hospital or local? Your transplant team should have been informed of your inpatient status to.

I take it you have the transplant co-ordinators phone number, you can always contact them if you feel your appointments have slipped through the net. You should be having regular bloods (like every 8-12 weeks) in order for them to calculate your UKELD score and determine your level of 'need'.

If you had an infection then were you actually temporarily take off the list at that time because having an infection means you wouldn't be able to have the operation - i'd be giving them a ring and making sure you are actually reactivated on the list if that was the case.

Co-ordinators/transplant team social worker should be available to have at least a chat in light of you not attending clinic for some time.

You need to push this one, it potentially sounds like you've had a temporary delistment that hasn't been reactivated or else you're being missed off t/p clinic appointment list. You need to be a bit of a 'squeaky wheel' not angry or rude but you do need to be your own advocate and push for the appropriate care ................ I know that I have to chivvy along one of hubbies consultants who has been known to fail to order 6 monthly scans and things in good time.

Give co-ordinators a ring and remind them you are there.

Katie

[taar]

I was on the list for 16m overall. 8m before 1st call, which got cancelled before I left the house, then a further wait of 8m, called to hospital, but cancelled once the surgeons looked at the potential liver...and then a week later... And I'm done! Don't give in, it will happen, I'm sure. Katie gives excellent advice, always.

[Yellowsydney]

I went to the transplant clinic every month whilst I was on the list,you should be having bloods done regularly. Phone your coordinators if you feel left out, they will have heard it all before.Please feel free to join our friendly and knowledgeable Facebook group called liver transplant support uk, thousands of people that have been in your situation.

Hilary

[Dogbot]

Hi I’ve been on the transplant list for two and a half years, one call up which was cancelled due to the liver not being right. But as everyone is saying I have monthly blood tests and now I’m down to every two months to go to the clinic but before I was every 6 months. So I asked the question have you forgotten me and they will tell you what is happening behind the scenes. They are not good at communicating so write your questions down so you don’t forget and ask them. Good luck

Stay safe All

Dogbot 🐶🌈Dave

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Gingerlad73,

We facilitate a range of virtual support groups for people living with a liver condition (and their families and carers) including a pre and post liver transplant group which runs monthly.

If you would find it helpful to speak to others with shared experience, you can register to join a group here

britishlivertrust.org.uk/vi...

Best wishes

British Liver Trust