The purpose of this letter is to clarify some information in a recent article in which I was interviewed regarding a kidney donation. While I commend the attempt of the local paper to share my experience and encourage others with similar circumstances, I feel that very fundamental information was lost in the story, and I would appreciate an opportunity to provide clarity.
I met my sister-in-law, Karen, when we were 14 and we have been good friends ever since. Even then, we knew that she suffered from polycystic kidneys – one of the most common forms of renal disease. Unfortunately for Karen, this meant a decline in her health to the extent that she required regular dialysis treatment beginning in 1999. During the 13 years she received dialysis, her family waited for the day that she might receive a cadaver kidney for transplant. It was not meant to be.
Twenty-five years ago, I registered with the Unrelated Bone Marrow Transplant Registry. At that time I learned that I have Blood Type O – the “universal donor” – meaning I could donate as a living donor to anyone. In November of 2011, I received a call from Karen, whom I hadn’t seen for a couple of years, to ask if I had it in my heart to test for a possible kidney donation through the Living Kidney Donor Program. Her health was in precipitous decline. Although the idea had been with me for 25 years, I still took the time to do some research before I responded with a commitment to donate my kidney. My research taught me that although I would endure a substantial surgery, I could expect to recover fully within six to eight weeks. Additionally, I could expect no long-term health ramifications for having only one remaining kidney.
The testing for possible donation is extremely extensive. You have to be a very healthy person, or they will not accept you for donation.
When Karen and I were tissue-tested for a final match, it was discovered that Karen had antibodies against my kidney that precluded the possibility of a direct donation. I was asked if I would be willing to participate in the Living Kidney Donor Paired Exchange Program. Again, I took time to research and understand the program, and once satisfied, I committed to continue with the donation.
The program works like this – kidney patients who have a willing but incompatible donor are included in an “intake” for possible pairing. Basically, we switch and swap in a chain of donor/recipient pairs until everyone in the chain gets what they need. Extensive testing is completed, and if everything goes well, a date for surgery is set. If any one person in the chain has to drop out, the whole chain collapses. This happened when Karen and I were involved in our first intake and we had to try again.
All surgeries across the country take place on the same day and all participants remain anonymous to one another. It took 16 months from the time that I was asked if I would donate, until I actually found myself in a recovery room after surgery.
Donor surgery is more invasive than recipient surgery, but a far less complex recovery. I experienced a couple of uncomfortable days, and then a few weeks of fatigue. That was it. Karen had a couple of weeks in hospital, followed by a month of frequent appointments to fine tune her medications. Her recovery in the first few days was exciting, but it will always be a condition that needs to be managed. She returned to her home in Kamloops after six weeks.
I am uncomfortable with the notion that anyone who donates a kidney or a part of a liver is a “hero.” We are average people doing what we feel is the right thing for someone we love. I believe that if people were to fully educate themselves about organ donation, most people would be willing to participate if it meant saving the life of a loved one – and even someone they do not know.
Karen and I communicate often. Because her appetite has come roaring back, she talks a lot about food. In a recent video of an afternoon in the park, she stepped up on an empty stage, kicked off her shoes, then leapt and twirled across the stage and back. My heart was full! She took her first bubble bath in 13 years – bliss!
We don’t love each other “more.” We are not “closer than ever.” We will probably get together later in the summer to compare incision sites. I would do it again in a heartbeat.
My reward in all of this has been to see a woman whom I love restored to a quality of life, and for my brother whom I love restored to a life off of the razor’s edge. I hope that others might consider living donation if it is in their heart to do so.
Denise Little, Oliver