Hello Morton Kidney Transplant supporters!   This supplemental journal entry is to keep interested parties informed, serve as “proof of life”, and add an additional section to the road map of experiences for anyone else going through a kidney transplant. 

Math

Life is a series of probabilities.  Some things are incredibly improbable/unlikely, yet they happen.  For example, being the only person in your family having a disease that is normally passed down genetically is as unlikely as my mother sinking a basketball through the hoop on a full court overhand toss (no offense intended, Mom). 

Then, there are things that are highly probable, but you doubt they'll occur.   Our biases lead us to believe “It won’t happen to me”.    There are various terms for this mindset.  Some examples are:

• "optimism" bias
• "neglect of probability" bias
• "I’m not good at math or rooted in reality and don’t have a clue about the world I live in" bias
  (my interaction with other humans makes me believe a lot of people are in this space – myself included)

Why am I’m talking about math/probabilities?   To answer that, here’s a quote from my October 9, 2021 journal entry:

“As I transition off Tacrolimus (tapering dosage down) and onto Belatacept (tapering dosage up), I’m more at risk of a rejection episode. “

The rejection episode 

I started feeling odd the first weekend of this month. There were some headaches, some periods of extreme exhaustion, and I generally felt ‘wrong’.  In short, it seemed like something was brewing, but I did my best to ignore it.

Early the next week, I had some muscle aches, chills, and a periodic low fever.  This got worse with each passing day.   On Wednesday the 10th, the fever went over 101, so I called my transplant team for guidance per the instructions in my standard issue kidney transplant handbook (this book is a real thing, it’s a good thing, and documentation shall save us all).  

I was told to go to an Urgent Care facility for a COVID and flu test.  The results were negative.   Then, they told me to go to the UT Southwestern emergency room for another COVID and flu test (evidently, someone seemed convinced I had COVID or the flu).   These were also negative.   

So, with that, they admitted me back into the big white hotel.   I was up on the transplant floor of the hospital for the next seven days.  

A kidney biopsy confirmed that my body was trying to forcibly evict Billy the Kidney through an “acute T cell-mediated rejection”.   My body’s plan for getting the kidney OUT of me remains a mystery, and I’m not going to think about it too much.   All I can come up with are mental scenes from the TV shows Breaking Bad and Dexter. 

While I was in the hospital, my creatinine climbed to 7.24 mg/dl and I got pretty sick before it came down.  There were the usual “illness” things like a high fever, uncontrollable shaking/rigors, and soaking sweats.  Then, there was the lack of kidney function which caused fluid retention, problems with phosphorus, magnesium, and potassium.   

I gained 20 lbs. of fluid in a few days, and that made normal things like moving, breathing, and having a heartbeat all very interesting.  (Note: they drew 14 lbs. of fluid off me in under two days and I dropped most of the rest after leaving the hospital).  

The treatment to stop the rejection involved four rounds of thymoglobulin infusions.   For those of you who are into the science of this experience, here’s an interesting fact:

Thymoglobulin is made by taking donated human white blood cells (T-lymphocytes) and injecting them into a rabbit. The rabbit's blood makes its own antibodies (a blood protein) against these T-lymphocytes. These antibodies are then taken from the rabbit's blood and made into Thymoglobulin.

I guess this explains my new love of carrots.

As an ongoing effort to suppress my body’s immune system, the doctors have added another medication to the mix: Zortress/Everolimus.  I’ll stay on Belatacept and Myfortic, too. 

For a while, I’ll be back on a heavy prednisone dose, more antibiotics, and more antiviral meds.  And, of course,  there will be many blood tests to see how things are going. 

All things considered, I’m very blessed.  While the experience was unpleasant (the way falling down and scraping your teeth on the pavement is “unpleasant”), things could have turned out a lot worse.    Lani watched over me, cared for me, and did all she could to cheer me up when I was at my lowest.   The medical staff did a great job of turning this situation around.   And, on the bright side, I’ve got a new experience under my belt.   This will be a good set of memories to draw upon whenever I get frustrated with the more mundane things in life. 

Until next time, my friends, stay well.