Eight days ago, my life changed forever.
But to go forward, I must give some background:
2011, I had some funky blood work and was referred to a nephrologist
because my kidney levels were off. He couldn't figure out what was
going on, since I didn't have high blood pressure or diabetes, so he
recommended a kidney biopsy. The results showed that I had Thin
Basement Membrane Disease, a hereditary disease that in his words, "was
the best disease to have" since it rarely progressed. It turns out that
my grandma had kidney disease but hers was attributed to high blood
pressure and age. It was not until my biopsy that we learned she had
My plan was to live a normal life,
with blood work being done every 6 months just to track any changes.
Last May, my levels had changed. My serum creatinine had doubled, and
it appeared that my kidneys were leaking protein. My nephrologist had
me do another biopsy to see what was happening. The biopsy showed the
disease had progressed more so than he had anticipated. There was
significant and permanent scarring of the kidneys. I was put on a
higher dose of blood pressure medicine (tough for me since I don't have
high blood pressure) and another pill for secondary hyperparathyroidism
due to the kidney disease. Bloodwork was now every three months. In
November, my levels were the same as May and August.
in February of this year, that was not the case. New tests showed
drastic changes, and not in a good way. One of the most important
numbers that doctors use to measure kidney function is glomerular
filtration rate (GFR). Normal is 60 -100. In November, I was 23. Now I
am 12.8. That means I am in end stage renal disease. There is nothing
to be done, no medicine to fix the scarring that has intensified over
the last three months. Nothing, but a kidney transplant.
here I am, embarking on such a life changing event, that it is so hard
to comprehend most days that I am actually living through this.
on the criteria for a deceased donor, the wait list is years and I am
not sick enough to be on dialysis yet therefore I am cannot be put on a
list anyway. So we are trying for a living donor. Unfortunately you
have to be my blood type (type B), and in good health (no high blood
pressure or other serious health issues) so most of my family is out of
the running. My sister has offered to be a donor, but she is AB
negative, therefore at this time we are going to attempt the kidney
exchange program. If she is considered a suitable donor, we can be
paired up with another couple in a similar situation. However, that
relies on finding another person in need of a kidney with type AB blood.
So there are a lot of unknowns. A lot of what-ifs. A lot of hoping
and praying that we will be approved in a timely manner before my
kidneys fail completely and I must go on dialysis. The goal is to not
need dialysis, as that can cause more complications with the transplant.
plan to share my journey on my blog. The next step is calling the
hospital tomorrow to set up the initial evaluation for a transplant.
The insurance company will not get involved until another batch of
blood shows the same (or worsening) results at the end of the month, so I
hope that the hospital will let us begin before approval because I
don't want to waste any time. A specialist at Rush, as well as my
doctor, are both big believers in being proactive and want me to run
right into this. Any time that is spent waiting leads to dialysis, as
well as other health concerns.
I'll be in touch!