No dialysis for me, after all! No operation to place a catheter either! My body decided to stagnate at 13% of kidney function!
This is not what I expected. When I was told that on Tuesday, I was insulted. What a bad time to stop the kidney function drop! 6 years of kidney function loss of 7% per year, and my body decides to stop at 14%. My kydney function decided to stop falling when I’m nauseous all the time and I wake up on average 5 times a night to go to the bathroom because my kidneys are too stupid to understand that it is nighttime! Just before dialysis could be useful to me (usually around 10%). That’s so fun! I really want to spend a lot of years like this, until the transplant that we do not know when it will arrive!
It’s even worse than that! The urine test I took to more accurately assess my kidney function gives a result of 22% kidney function!
Hey! if I am at 22%, that I stagnate there and I have the symptoms that I have now, I am afraid that doctors won’t help me with my %?Hey ! si je suis à 22%, que je stagne là pis que j’ai les symptômes que j’ai là, j’ai peur qu’on prenne encore moins bien en charge mes symptômes de m%?$&!amp; symptoms !
Fortunately, I can stay on the waiting list for a cadaveric donor transplant anyway since the blood tests give a result of 13 or 14%, and you just have to be considered in end-stage kidney disease by one of the tests to be on it.
My nephrologist put a note to my file so that I can be evaluated by one of his colleagues next time (I am followed by the acute renal failure clinic, not just by a single nephrologist now that I’m under 15 GFR). Who knows, maybe a fresh look in my file will make someone see something that we have not thought of to manage the symptoms!
What also bothers me is that if I don’t start dialysis, I don’t earn the points needed to get a cadaveric kidney transplant. Indeed, one of the kidney allocation criteria is the waiting time since the beginning of long-term dialysis, and if I never start it and I can’t find a living donor, I’m still afraid it will be extremely long before I can relive a normal life.
In addition, next September, I will only get 60% of my salary if I do not return to work before that, instead of the 80% I actually get. I know I’m lucky because I have a good job with good salary insurance, and our mortgage is really small since we live in Trois-Rivières, Québec. I find it so simple to be able to split the expenses in two with my spouse for everything that is in common, I do not want to have to contribute less…
I try to bloom where I’m planted, but I just don’t want it to stretch forever… I love my job so much, and our baby project also can’t happen while we wait after the transplant.
Damn. That means I have to put more effort into finding a living donor. It’s so much pressure. I feel like my life is on pause, and I’m the only one who can help myself.
But hey, one day at a time, and you have to focus on what you have power over. Fortunately, the rest of my life is going well, and I have a happy brain tendency.
Do you have any ideas for things I could do to help me find a living donor? I accept all ideas, no matter how crazy they are!
