The Story

On January 29, 2008, we learned that my younger sister needed a kidney transplant.  That came as quite a surprise, as she’d never been diagnosed with kidney disease.  We knew very little about transplants or kidney disease, and the sudden diagnosis left little time to get educated.

Karen was diagnosed with IgA Nephropathy, which is also called Berger’s Disease.  Ultimately, it’s more of a condition than a disease, as the cause has not been determined.  The “IgA” refers to the fact that Immunoglobulin A collects in the kidneys and forms scar tissue.  “Nephro” is the Latin root for kidney, so a nephrologist is a kidney doctor and nephropathy is a kidney disease.  It is an autoimmune disorder, but not much else is known.

Karen has always been healthy, and the only one in our family not prone to carrying a few extra pounds.  Since her last pregnancy in 1999-2000, she had regular female check-ups, but, because she wasn’t yet forty, so she had not started having complete physicals.  Many people experience rashes or other symptoms alerting them to the disease, but Karen only experienced a slow decline in energy, intermittent headaches, and a change in urinary habits. She suspected diabetes, as there is some distant family history of it.  Instead, she was told that her kidneys were functioning at about 10% of normal, she’d have to start dialysis soon, and she would ultimately need a transplant to survive.

I realized early on that I was the most logical donor.  My sister Jolene was a better tissue match and was more than willing, but she had an issue because of kidney stones and other things.  I was equally concerned about passing the physical.  Specifically, my blood sugar level had been elevated at my last physical, and I was afraid I wouldn’t pass the glucose tolerance test.  Diabetes takes a toll on kidneys, so they won’t let you donate if the tests suggest a strong likelihood of diabetes later in life.  Fortunately, I had a little extra time to prepare.  I managed to lose about twenty-five pounds in the two and a half months between the diagnosis and the surgery, and I’d lost about fifteen by the time I had to take (and pass) the glucose tolerance test.

My interest was in expediting the matter as much as possible.  The goal was to have the surgery before Karen had to start dialysis.  I made my opinion known to the coordinator at the University of Wisconsin -- Madison.  When things didn’t move quickly enough, Karen and I went to Mayo for a second opinion.  They opined that antigen matching (see “Donation Info”) was not as important as the absence of existing antibodies in the recipient to the antigens of the donor.  We quickly scheduled a blood test and I was found to be a match.

Ultimately, Madison is closer to my sister (who lives in Wausau) and has more experience and success with kidney transplants.  As a result, I went there the following week for my complete physical.  I was polite and enthusiastic, but I never hesitated to mention that I’d recently been at Mayo and that I wanted the surgery taking place as soon as possible.  Given the amount of money involved and the fact that Karen was fully insured, I wanted them to know that we had options.  We were scheduled for two weeks later -- April 17, 2008.

 My surgery started at about 12:30 and took four and a half hours.  Even though I had lost weight, my kidney was encapsulated in fat (see photos -- if you have a strong stomach).  That isn’t a problem, but it slowed the procedure.  As it happens, my kidney was also quite large.  That’s generally a good thing.  We nicknamed it the "Nephropinator."

 I don’t remember anything about the recovery room other than being told they were taking me to my room.  I don’t remember a lot about the first several hours there either.  One of my first memories was my brother-in-law telling me that my former kidney was setting a record.  People with kidney failure have difficulty manufacturing urine and, in the three hours since the surgery, Karen had already passed three liters.  

 I was up and walking before midnight.  The next day I was sore from the incision, but more concerned about the return of my bodily functions.  On Saturday, thirty-six hours after major surgery, they told me I could go home if I wanted.  Because home was a four and a half hour car ride away, I declined.  Just the same, I only missed two days of work and then worked shorter hours for a week.  

 I’ve had no ongoing problems and was referred to as “the poster boy for live kidney donations” by my surgeon.  Karen’s lab results have all been basically perfect.  I have since been contacted by someone who knew our story and was considering a donation to her brother-in-law.  Ultimately, she did join one of the most exclusive clubs in the world, and, as far as I know, is also doing fine.  

© Bob Gust 2015