Kidney donor saved his life
Editor’s note: David Clark is an anesthesiologist at Montgomery County Memorial Hospital. He recently had a kidney transplant. In honor of April being Donate Life Month, he decided to tell his story. Here it is in his own words.
My name is David Clark and I have kidney disease.
I found out when I was 17. It was just a fluke, really. I was in a high school health class that visited the local hospital for a day. They sent me to watch some ultrasound procedures in X-ray, but that particular time they had no patients so they used me to perform an ultrasound. The tech said, “Let’s look at your kidneys. Everybody likes seeing kidneys.”
Well, not very many people had kidneys like mine. Mine were full of cysts. It kind of freaked out the tech, but polycystic kidney disease (PKD) runs in my family so I was not shocked. My mom, my aunt, and both of my sisters had it, as well as countless past relatives that I never knew.
Being so young, I failed to fully realize the seriousness of this discovery. I told my mom about it and all she said was, “Don’t tell anyone about it or you won’t be able to get life or health insurance.” You see, one of my sisters also found out at a young age during a scheduled test so it was in her permanent health record. She never could get private health or life insurance unless she participated in a group plan, so I kept it secret. I told no one. I think for a while I even convinced myself that my kidneys were just fine. They weren’t.
Polycystic kidney disease is the most frequently inherited disease in the United States. More than 600,000 people in the U.S. have it, and more than 12 million suffer worldwide.
PKD causes the formation of cysts in the kidney that grow over time. These cysts grow and push normal tissue out of the way and slowly affect the function of the kidney. Kidneys can grow to be the size of footballs and weigh up to 20 pounds. Mine were almost the size of a football.
Since the kidney is over-engineered, it takes a long time to see any changes, but inevitably, kidney failure is the end result. There is no cure. Options are dying, dialysis, or a kidney transplant.
If you have never heard of PKD, you are not alone. We are pretty quiet about it. It’s not a glorious disease, and patients have a reputation of being difficult. We get cranky and itchy and have leg cramps. We are generally short-tempered. These are generalizations, of course. Some get along pretty well (like me) and some are completely disabled by their symptoms.
About 16 years ago, I had a bad kidney stone attack that landed me in the hospital and led to a three-hour surgery to remove the three stones. Needless to say that the cat was out of the bag. My polycystic kidney disease was in the open. I decided to start seeing a nephrologist to monitor my condition. For 15 years, I did just that.
In 2015, notable changes started. My kidneys had reached a point where they could not keep up as much and lab values began to rise. As my levels continued to rise, the symptoms of kidney failure began to get worse; itching that would not go away, being tired all the time no matter how much sleep I got, irritability, and frequent nausea with eating.
In January of 2016, my levels reached the point where I qualified to be put on the kidney donor list. This meant a complete two-day workup, about a gallon of blood draws, and counseling. Once I was approved and put on the donor kidney waiting list, I was told that the average wait time for my blood type was 18 months unless the perfect kidney presented. I was to remain within a two-hour radius of Omaha and to avoid getting sick. A donor could be found at any time and I would have to drop whatever I was doing a report to the hospital.
Average wait time of 18 months – I didn’t think my native kidney would keep working well enough to keep me from needing dialysis for that long!
Why is the wait so long? There is a lack of kidney donors. There are more needs than can be filled in a timely fashion.
In the early morning of last Aug. 11, I got a call from the Nebraska Medicine Transplant Office. They had a kidney for me. I had only been on the list for four months. I definitely was not expecting a call this soon. I was speechless.
Several things went through my mind – first, disbelief, then panic, then excitement. My wife and I had to make several quick phone calls to family and work (I was on call at the time), pack up some things, and then drive quickly to Nebraska Medicine to check in. That day was a whirlwind of activity with final tests, visits with all the staff that would take care of me, and family coming in.
After waiting 20 hours I was finally taken in for my transplant. For me, the next thing I knew was waking up and in a little pain. It was all over. Just like that I had a new kidney! My doctor said everything went great and that the kidney was already working hard. What a special thing that was to hear.
I later learned that I received what amounted to the perfect kidney and that is why I was moved to the head of the line. My doctor said that even a family member donor would probably not have been as good of a match as the one that I received.
Now for the hard part of the story.
In my case I received a donor (cadaver) kidney meaning someone had to die first before the kidney was made available. Someone died for me to live. I am grateful for the gift and blessings I received that day but somewhere out there was a family grieving at their loss. For a long time I took that very hard and would get emotional just thinking about it.
In December I received a special holiday surprise – a couple of letters from the mother and aunt of my kidney donor. I found out who my donor was. When I say I found out who she was, I don’t just mean her name. I mean I “found out” who she was. What I learned that day was that there is a higher power out there and He works in very mysterious ways.
This person was not only a match to me physically, but we were also a match in our personal lives. Personality, interests, temperament – all were a good match. This person had been involved in a car accident 10 years ago that almost claimed her life. She survived, but that accident changed her.
That was when she made the decision to become an organ donor. She also informed her family and they supported her decision. I say this because until I read that letter, I was feeling guilty. I am still emotional about the whole thing but not guilty anymore. Her family is grateful that her death was not the end of her story. A part of her is living in so many other people. Her mother expressed thankfulness that I was blessed with this gift of life. My donor’s nickname was “Ladybug” and out of tribute to her I have named my new kidney “Ladybug.”
My life has been changed by the gift of a kidney donor. As a result of my experience, most of my wife’s family has decided to become organ donors. I hope and pray that more people hear stories that impact the way that they feel about organ donation. There is so much need out there.