Kate: A Twin Sister’s Donation – Reflections After My Twin’s Death

My fraternal twin sister Nancy developed an auto-immune disease, scleraderma, when she was 38 years old. It’s a nasty disease that causes one’s skin to harden, including organ skin. After several years, her kidneys failed from the disease. She hoped her kidneys would recover, but after a few years on dialysis, she requested a transplant.

Once Nancy asked for the transplant, my siblings and I were faced with the question of being a donor. Our 4 siblings declined for various reasons. I had been a bit of a hypochrondiac, always fussing about one thing or another with my health. The thought of major surgery and living the rest of my life with one kidney was quite frightening. I didn’t even know if I could pass the tests, let alone be healthy afterwards.

But she was my twin, and my heart told me to do it. I told her that I wanted to be her donor. After a bit of hesitation, she accepted, and we proceeded with the tests. I was a very good match, as siblings often are. (Identical twins are perfect matches; fraternal twins are like other siblings.) I passed all the health tests and with each one, the likelihood of the transplant grew.

Shortly before we were scheduled for surgery, I developed a severe case of the flu, and our surgery was postponed for several weeks. While I was sick, I began to lose my courage for the transplant. I consulted a therapist that I had seen in the past, and came back to knowing that I felt called to do this, and that I would be quite upset with myself if I didn’t.

I surrounded myself with loving friends who helped me deal with my fear, and supported my choice.

While I was sick, Nancy became ill as well, and needed a transfusion. Her transplant team felt that it was unlikely that we would continue to be a match (because of the antibodies that develop after a transfusion.) I decided to use the test results as a sign – if we still matched, that would tell me to continue.

Much to the surprise of the team, we still matched, and surgery was scheduled.

This surgery happened in 2000. When it was originally scheduled, I was to have the older type of surgery, with the large incision. I was really nervous about that incision. It was a pleasant surprise a few days before surgery to receive a call from my surgeon inviting me to have laparoscopic surgery if I was willing to be the first at our hospital. I said yes.

In preparing for the surgery, I also met with another therapist whose specialty was helping people prepare for surgery. At her suggestion, I made a tape of inspiring music and myself reading Psalms and prayers. I requested and was given permission to have this played by headphone in my ears even while I was asleep during the surgery. In fact, I later heard that the surgeons kept the room quiet and didn’t play their usual music, because they knew I had music playing. It was remarkable to come out of anesthesia hearing my own voice praying.

Family and friends from church spent the day in the waiting room, talking and praying for both of us. It was comforting to know that they were there.

My other sisters were pretty nervous, having two of us “under the knife”. We both did fine, though. Nancy immediately felt much better. I left the hospital within a few days, and she left in a week or so. I felt pretty good within a few weeks, went to work in a month, felt slightly “off” for six months or so, and then was completely back to normal. I’ve had no health impact from having one kidney.

Nancy lived for 5 years with her new kidney. We became closer than ever.

I had hoped that she would live much longer, and that she’d have really good health. But she continued to have other severe problems related to her disease, and experienced a couple of additional surgeries not related to her kidney. Her final year was quite difficult, as her lungs deteriorated and she needed to be on a ventilator for much of that time. She died on
February 13, 2005.

Despite all of that, I’m thankful for the opportunity of having given her a kidney. She had the freedom of five years off dialysis. I have the satisfaction of having made a big difference in the life of the most important person to me.

From the surgery I developed a sense of confidence, as that hypochondria that I mentioned earlier has diminished. I discovered just how healthy, sturdy and well I am. That’s been a lovely and unexpected benefit.

If you have the opportunity to make the difference for someone you love … trust what your heart tells you to do. If you choose yes, surround yourself with people who love and support you. You just might find that the hardest part comes before the surgery, not after, and that making a difference is a wonderful gift to yourself.

If you have questions or would like to contact me, write to me at kgrannemann@earthlink.net

Kate Grannemann
Twin to Nancy McEvoy