Sarah Needs a Spare Part - An Introduction

Eight days ago, my life changed forever.

But to go forward, I must give some background:

In 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 something more.

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.

But 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.

So 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.

Based 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.

I 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!


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