British Liver Trust
12,501 members6,139 posts

be careful what you wish for

when i was young i wanted to be special to be different, - well 2 years ago i learnt i have a rare hereditary condition- that caused veins and arteries to join up and cause problems with your circulation . in me these AVM's as they are called are in my liver - causing me to have heart faliure and pulmonary hypertension - treatment is a liver transplant . I'm very lucky to be on the transplant list as my liver actually works very well . i attend the liver clinic every six weeks and wait for the phone call . So as my consultant said when he told me ,i needed a transplant be careful what you wish for you might get it .i don't mean to sound bitter ,but sometimes i feel so alone , as i don't know of anyone else in a similar position , who needs a liver transplant to treat another medical condition

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I hope you are still looking at this site, if you are please post again as you're not alone.... I'm one and there are more folks like us than you think (not a huge amount i'll agree but we are out and about post transplant).

I know how odd it sounds too people when you tell them you're on the list... yet not looking (at least in their eyes) like you need a transplant, hard for them, very hard for you.

I felt like i was undeserving, especially when i had to live on the transplant ward waiting for my liver & kidney over many months. I could walk around go out at night and have a beer just doing normal stuff just like healthy people.

In fact once at the start of my stay when a new member of staff came on the ward they thought i was visiting and told me i should come back at the appropriate visiting times (it was late..11.30pm).

Don't kick yourself for feeling as you say 'bitter' this is very normal lots of fellow patients and myself felt the same on and off pre/post transplant.

See if there is a transplant coordinator you can see, ask your consultant or staff were you go for the liver clinic. They (the liver clinic) must/should give you support other than just treatment for your illness.

You are a person not a illness, and need support for peace of mind, it can't be expected that you go into this cold.

I know from a life time of hospital stays and transplants (2 livers and kidneys) over 52 years this can be over looked.

All the very very best and you are NOT alone.

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