Hi Mary et al,
I went for my 6 month checkup with my Nephrologist this week and I am still stable. My creatinine is 2.3 which means this is 3 years now since I first discovered I have PKD and I am still 'stable'.
When I first went to see the doctor in 2004 he talked very seriously about how I should start looking for a donor kidney. This week he said that I can continue with the 6 month visits (instead of quarterly) although I still have to have blood tests done at the three month intervals.
I am still on the National Kidney waiting list but I am only eligible for a perfect match. Unless my kidney function goes to 20 or below I won't go on that wider list. Creatinine of 2.3 is above 20% but less than 25% so I am ineligible. YAY!
So I still carry around the cell phone and wonder every time Jim calls it if it is the kidney people. Since it is a Trak phone it is fairly expensive and I don't use it much otherwise (unless the car is in for service.)
So any of you who tried to be my donor, and you know who you are, can put this worry on the back burner. I am trucking along quite well. I am still looking for a donor but that is just in case.
I try not to eat much of the wrong foods. I am helped in this by my taste disorder which is getting better but still thinks chocolate is roadkill. I also get to take naps with no sneers at old age because they say PKD can make you tired. That's my excuse and I am sticking to it.
However I still stay up late at night which I never used to do. I find myself up often at one a.m. I have talked to several other people who are diagnosed with diseases and they have told me they do it too. It is that feeling of treasuring the time you have, not wasting it with sleep. If it seems illogical to take naps and stay up late I can only say logic has no part of this at all.
I am going to Faye's Henhouse All Cooped up quilt retreat this weekend and have 3 projects to work on. Dylan's quilt is finished so I can play on anything I want.
Love to you all,