Skip to main content

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!

Sarah


Comments

Popular posts from this blog

Book Review...and a Giveaway!!!

I was lucky enough to win an ARC of When the Rogue Returns from Sabrina Jeffries herself! I couldn't wait to read it.  After reading the first book in The Duke's Men series, What the Duke Desires, I was excited to see that this next book was about Victor Cale.

In When the Rogue Returns, Victor Cale is headed to Scotland to investigate a woman, Sofie Franke.  He has his suspicions that this woman is actually Isabella, his wife who disappeared on him ten years before.  He has spent the last decade searching to bring her to justice after she stole the royal jewels and left him to behind to deal with the authorities.  Isabella Cale, now known as Sofie Franke, has built a new life for herself and her ten-year old daughter after her husband ran off with the royal jewels.

Are you intrigued yet?

Victor and Isa's first meeting was great! Both blame the other for the missing jewels, and both are greatly suspicious of the other's motives.  Despite their renewed feelings of pas…

The Tree of Life

My name is Sarah, and it's been 11 months since my last post. I've thought about it, but life is constantly getting in the way. I even made a goal this year to write more, but it really hasn't happened yet.  Until today.

I went on Facebook this morning to check if there were any updates about the accident I saw on the way to work. Instead, I saw an obituary for a woman I've never met. But I know who she is. She received a kidney transplant a few months before I received mine.

And according to her FB page, she had a difficult time leading up to transplant, a tough recovery, lots of additional illnesses and setbacks, and long hospital stays.

I, on the other hand, never had dialysis, was on the transplant list for an unbelievable 5 months (the wait list is normally 5 YEARS), had a 3-day hospital stay, and other than not tolerating pain medication (so I could only take Tylenol which did nothing for the pain), I've been on my merry, healthy way for over 3 years.

I saw …

The Cindy Tote - A Review

I have been wanting a new work bag for, well, ever. In fact, I told Keith recently that I really wanted the Thirty-One Cindy tote, but couldn't justify the price at this time. He mentioned that since I had been complaining about this for well over two years, I could use part of our tax refund to get a bag for myself. I was super excited, but wanted to make sure it was going to be money well spent.

I emailed my wonderful friend, MB, who confirmed that yes, the Cindy tote was a great bag, and..... there was a great deal going on this month as well!

*Please excuse the cell phone pictures, our computer is still broken and I (meaning Keith and the mess that his desk) still cannot find the camera cord.

The front.  Isn't it pretty? 
And no, I swear I did not hug the bag  out of happiness when  I first took it out of the box.



The inside has one zippered pocket,  as well as three deep open pockets.   There is nothing I like more than a bag with lots of pockets.

Here it is filled with my …