Hi, I'm Gayle Curtis and I need a kidney.

Letter from a Donor Nephew

Memories of Lefty By Matt Comstock

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Do you want a big boost of karma?

Have you ever wanted to save a life?

Do you have two working kidneys, and feel you can spare one?

 

If you answered yes to any of these questions PM me for details about an exciting opportunity!

 

My cousin, Allison Rose Comstock, who everyone knows as Sunny, posted these words in September 2017. In July, 2018, she was sporting a new-to-her kidney we call Lefty. Lefty used to be mine.

 

The decision to donate Lefty to Sunny is a story with a long arc. I grew up watching my grandma struggle in her fight against PKD, Polycystic Kidney Disease. I didn't understand all the aspects of the disease, but it left Grandma tired, and weak, and unable to participate in family activities. She had this disease that required her to “get her blood cleaned” several times a week, through a process called dialysis.  Each visit took hours.  When she traveled, Grandma and Grandpa had to find a dialysis center wherever they were to ensure she stayed healthy. This was one of my first introductions to the frailty of the human condition. How lucky are we when we are healthy? We never fully realize, until we're not.  

 

In my adolescence, we started learning that her children were also afflicted with this insidious disease that reduces kidney function, reduces the degree of elimination of toxins in the body, and grows huge cysts that cause the kidneys to swell and crowd out and affect the function of the other organs nearby. When one parent has PKD, their children have a 50/50 chance of contracting the disease, and if neither parent presents with the disease, their children won't have it. Of Grandma and Grandpa’s six children, two beat the house, my dad and one of my aunts didn't have the disease, but the other four siblings all tested positive for PKD. As a kid, I felt guilty to be relieved that I had not inherited this disease.  And suddenly, many of my cousins, my best friends in childhood, were at risk of having this same horrible, debilitating disease.

 

By 2017, Grandma had passed away due to complications of the illness.  Three of my aunts and my uncle were fighting their own battles with PKD.  My uncle, Sunny's father, had received a kidney donated from my PKD-free aunt. My father was interested in donating one of his kidneys to a sibling, but was dismayed to learn that his kidney function was slightly out of range to allow him to be a candidate. Of the kids in my generation, every one of my cousins with a 50/50 chance of inheriting the disease, had. The dice seemed loaded, and the disease seemed to be more aggressive and presenting much earlier than it had with Grandma. One of my cousins had already received a donated kidney from his sister in law. Sunny learned she had the disease when she was only 17.  By 2017, Sunny was in her 30s, married, with two young children, and her kidney function was low enough that her doctors were starting to talk about dialysis and kidney donation. Statistics suggest that once someone starts dialysis, even if they do eventually receive a donated kidney, it may not perform as well, or for as long, as it could have. Donated kidneys, while life-saving, are often a temporary reprieve, and they don't last forever. Donations from live donors are preferred and give the best chance for long term success. And Sunny needed a kidney. 

 

How many times in your life do you get a chance to make a difference, to save a life, to make the world a better place? I was a pigment chemist, making bluer blues and blacker blacks, not a lift-the-car-rescue-the-baby-from-the-burning-building sort of hero.  More like the SNL help-you-with-your-taxes, “Middle Age Man,” “You're looking at my gut, aren't you?  I'm working on it!” sort of hero.

 

The choice to donate a kidney is an intensely personal one, but it would also affect my family. In 2017, I had a good job, and a wonderful family. My three kids were adults and mostly :) supporting themselves. My wife and I were high school sweethearts and grew up together. She had the chance to meet Grandma and get to know her for a couple of years; she knew about our family history, and knew and loved Sunny like I did. 

 

We learned that my company had a short term disability program that would relieve the financial burden of being away from work for the 4-6 weeks it would take me to recover after the donation, and Sunny's insurance would cover the testing, the surgery, and other aspects of my care. Also there were funds available to help with travel and accommodations. The combination of  this supportive situation, our shared family history, the boost of karma, and the chance to save a life, my cousin's life, led me to start the process to see if I'd be a good match to donate a kidney to Sunny. 

 

For someone receiving a donated kidney, a ”good match” means the donor kidney is not as likely to be rejected by the body. There are many factors that indicate a good match, like blood type.  Since cousins share, on average, about 12.5% of their DNA, this improves the odds of being a good match. But oh, the testing.  

 

Of course you need to be healthy and have well functioning kidneys in order to donate. Check and check, but the testing was so much more involved than that, ranging from obvious blood-markers and other technical match requirements, to mental and social aspects of my life. Did I feel like I was being pressured to donate? Not once had Sunny or anyone else asked me directly if I would donate, but of course I felt the pressure of our shared family history and the honorable burden you feel when you know you can make a difference in someone's life. I'd never been squeamish about needles and I’d given blood countless times, but they drew so many vials of blood. At one point while drawing blood, a nurse asked me if I was feeling ok. Dazed, I replied, “I am well,” and she told me to lay down for a while. It's become a family joke, “I am well.” 

 

With a barrage of tests behind me, I finally visited the hospital where the donation would eventually take place. I met with doctors and nurses, chaplains, and other caregivers, and enjoyed even more blood draws and ultrasounds!  They were my advocates. Of course we all wanted Sunny to get a kidney, but they were making sure that I was going to be healthy and ok after the donation. After arriving home, we had to wait an agonizing week for the final verdict. Our family can be pretty competitive, from volleyball to card games to pie baking contests, and I had already passed a number of hurdles and “beaten out” other potential donors, but it was a strange mix of accomplishment, excitement, and fear, when I learned that I was cleared to donate Lefty to my cousin, Sunny.

 

We scheduled the donation for July 12, 2018. We celebrate it as “Kidneyversary” now. Looking back, I'm embarrassed to say that I scheduled the date so when I visited Minneapolis I had a chance to see a favorite band perform before the operation. We met in the waiting room, shared a hug, and the next thing I knew, doctors were telling me that the donation was a success and Sunny's “numbers,” mainly the creatinine level, the primary marker of kidney function, were surprisingly already improving hours after the surgery.

 

We'll celebrate our seventh Kidneyversary this year. I've never regretted the decision to donate. My health is good, my kidney function is a little lower than normal, but stable. Every time I visit my nephrologist, she tells me I'm one of her favorite patients, because all of her other patients are so sick. Sunny is thriving. She's completed her master's degree in Social Work and has a rewarding career serving her community. We are all part of an interconnected web, and I realize now that donating my kidney to Sunny improved her life, but also the lives of her children, and all the lives she touches as a passionate advocate for people in need. Sunny calls me a hero, and thanks me for saving her life, but she gave me the chance to make a difference in the world, and I'll always be profoundly grateful for the opportunity.