Karen - totally got you there. For me I've been active on the list 4.25 years, so I feel your frustration and wondering if you're still there. A doctor said to me the other day "Are you on the list?" and I blurted out "Well that's what they tell me!" and I knew it sounded frustrated, because it was.
I just have to remember that these averages of 4-5 years are made up of lots of waiting times. We know folks from IHD who have waited 4 or so years, some 7, some 11, and some 6 months.
We just have to hang in there and try to not stress about it so much.
It was funny actually because just the other day I had this totally random thought - basically if/when I get that bloody transplant, in theory I won't need to have my phone on 24/7 on the loudest ring volume setting to wake me up!
I think it's kind of like love... it often comes along when you least expect it. The problem is as time goes on I feel like I SHOULD expect it soon.. and there is the dilemma.
A friend told me recently she had a psychic vision that I got the call on May 8th. Hope it's this year!!
Maybe for some peace of mind? you could contact your transplant co-ordinator and ask them to find out if you've been matched to any organs yet? I did that and they responded that yes, I had matched to a number of organs already but people who had been waiting longer got them(fair enough too). I guess that gives me some comfort to know that I HAVE matched and presume I will again in future.. and hopefully one of those times I'll be the #1 on the waiting list....
Fingers crossed for you too obviously.
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