Brian's Kidney Journey

10/02/2025

OK, it's been a minute since I posted. Here's an update: Last year, on the day after my birthday (July 26), I had a procedure called a TAVR (Trans Arterial Vascular Repair) to fix something going really wrong with my heart. I was in the hospital a total of 8 days, and it was easily the closest to death I have ever felt.
The heart not pumping correctly meant fluid was building up in my chest cavity, so my lungs were compressed, meaning I was really struggling to breathe. It was really scary. I couldn't sleep, I was completely exhausted, it was a generally very bad time.
Luckily, the procedure worked, my heart got better, and I'm still here to tell the story.
All of this work up and attention however led to a lot of blood work and an unfortunate discovery. It turns out I have what is known as Acquired Von Wullibrand Syndrome. The quick explanation of that is that my blood is missing a protein that works to bind platelets together, meaning I'm at very high risk of bleeding out anytime I get a cut or definitely after surgery. This makes the transplant exceed the risk level the hospital is comfortable with, and eliminates me from consideration as a viable candidate.
HOWEVER, I also have another blood disorder going on that has the term coagulatory in the name that causes excessive clotting. The hematology team finds all of this very fascinating. Their best guess is that these two competing disorders are currently balanced against each other with an end result of me being asymptomatic. I neither bleed excessively, nor do I have issues with clotting. I'm some sort of anomaly where it all just keeps working.
As of right now, the hematology team at U of M is monitoring over a span of time the changes in these two competing disorders. If my results remain stable and most importantly, if I remain asymptomatic, they believe I can be reactivated on the transplant list.
My follow up lab work is October 26th, with the resulting analysis a week later.
Wish me luck, please!

Oh, and by the way, thank you all for following this page, it means a lot that people out there are actually looking at this from time to time, and I'm not just screaming into the darkness. Lol. Love you all.

11/18/2024

In approximately 4 minutes, the Sandy Hook Elementary shooter fired 154 bullets, killing 20 children and 6 educators. Sign the petition now to demand Congress stop the sale of assault weapons!

08/12/2024

Palate cleanser after that last dense post:

08/12/2024

Second post today is a bit of info for the curious regarding dialysis. The basics are that since my kidneys don't work, dialysis is the process by which doctors attempt to provide the necessary filtering of my blood to prevent toxic levels of gunk from building up in my body.
When I was first diagnosed, I chose to do peritoneal dialysis at home, overnight, EVERY night. This closely mimics the kidneys' 24/7 functioning as best as possible. Using a catheter in my belly, I would connect to a machine and it would cycle dialysate through my system which would pull the toxins through my peritoneal membrane and out of my body. Then I would flush these in the morning.
After 2 years of this, that membrane wore out, and a more direct approach was necessary. So I switched to hemo dialysis at a center. This is done three days a week, M,W,F, and involves needles and a surgically constructed access in my left bicep.
It also requires about 5 hours each time. This time issue is the main reason the State of Michigan chose to terminate my employment, but that's a post for another day.
While I just sit in a comfortable reclining chair while I get my dialysis, the process of having all my blood removed and filtered multiple times over the five hours takes a toll and leaves me exhausted for several hours afterward.
Luckily, I don't work on these days, so I'm able to nap as necessary to let my body recover. Dialysis is early in the morning, and I'm usually back to normal by late afternoon.
This has been my routine for roughly the last three years. Hope this provides some insight into what my journey looks like from my point of view.

08/12/2024

Couple posts this morning while I'm at dialysis. First this one of my two gorgeous granddaughters. I was so lucky this summer that my daughter Allegra was able to vacation from Florida to Michigan to visit! Got to spend some time with these lovely ladies, and we had a blast! Thanks to Allegra and Shawn, and my sister Jeannette for providing the water balloon 'arena' (her back yard). Great memories.

08/02/2024

Four generations. A Roger and three Brian Blakes. Dad chose the facial expression. 🤣

07/31/2024

Being from a relatively small family, my immediate family members have all been tested, and sadly, no one matched, or there were other health concerns that prohibit them from donating. Hence, after 5 years on both peritoneal and hemo dialysis, I am creating this page to expand my search to the great wide world of the internet.

Could you be a match? If you are O positive and relatively healthy, let’s get tested!

Even if you’re not a match for me, You could match someone else, and give someone the gift of life.

How you can help:
U of M Transplant Center phone: 734-615-1850
American Kidney Foundation Website: https://www.kidneyfund.org
Living Kidney Donation information: Kidney and Pancreas Transplant | University of Michigan Health (uofmhealth.org)

37 million Americans are living with kidney disease, but most don't know it. The American Kidney Fund (AKF) is the only organization that takes a comprehensive approach to ending this devastating illness.