This post, first and foremost, is a love story. But I need to mention some medical stuff before I get to the love part.
About 34 years ago I was heading into kidney failure because of a condition called polycystic kidney disease (PKD), a chronic ailment that reduces kidney function over time. PKD is one of the most common genetic disorders, affecting about 500,000 people in the United States, according to the U.S. National Library of Medicine.
I’d been diagnosed at the age of 19, following an episode of high blood pressure. By my early 30s, my kidneys had deteriorated to the point where I needed to begin dialysis treatments.
Having to rely on an “artificial kidney” to survive was not easy. There were dietary restrictions, risks such as infection, and the psychological strain of being frequently reminded of my illness. But I had no choice. The treatments enabled me to function as normally as possible under the circumstances.
Unfortunately, dialysis became less and less effective for me over time. At the advice of my kidney doctors, I got on a waiting list for a transplant at Beth Israel Hospital in Boston.
Crazy as it sounds, I had mixed emotions about the whole thing. Clearly I needed a transplant, but I also knew it would be a major operation. I wasn’t sure how I’d feel about living with someone else’s kidney. But again, it’s not like I had a lot of choices.
In April 1994 a transplant coordinator called to say a kidney was available, so we hopped in the car and raced up north. We weren’t expecting the call so soon and were caught off guard. We also didn’t anticipate that the transplant might not work, but unfortunately it didn’t because of a clotting issue.
Gift of Life
Over the following months, my health continued to decline as my kidneys failed. In the summer of 1995, when it became clear that I needed to get a transplant sooner than later, my wife Reneé decided to be tested to see if she would be a suitable donor.
While I was extremely grateful for her offer to do this, I declined it. I didn’t see the point, because there was no way I was going to put Reneé at risk, especially when there were no guarantees that the transplant would work. Better to take my chances and wait for another donor from the waiting list.
Knowing that my time was running out, Reneé was determined to be tested, however long the odds that we’d be a good enough match for a transplant.
One thing that helped in her decision making was an article she read in the New England Journal of Medicine about the success of kidney transplants between spouses. An editorial in the same issue said, “the excellent results reported…force the medical community to begin a debate that has been delayed too long regarding the legitimacy of transplanting kidneys from both emotionally related donors and genetically related donors.”
Surveys of transplantation centers showed that every American transplant center that performed more than 50 transplants per year were considering spouses as acceptable donors. “Living unrelated donors may thus become a major source of organs,” the editorial said, and the excellent results reported “should encourage the use of spousal donors everywhere.”
For what it’s worth, the article was published on August 10, which happens to be Reneé’s birthday.
A Positive Vibe
When the tests came back, we were amazed to learn that we were as good a match as if we were siblings. The transplant team was thrilled. To us, it seemed like a sign. I still had misgivings, but Reneé was adamant that we move ahead.
This time around, I had signed up with the transplant program at Westchester County Medical Center. When the surgeon told us the available date for the transplant, we were astounded. It was October 25, our wedding anniversary.
What a positive vibe, we thought. Despite my ongoing concerns about Reneé being a donor, I was convinced that this was the way things were supposed to happen. And so they did.
Sensing a good news story story—I’m a journalist afterall—and wanting to promote the idea of organ donation, I notified our local newspaper Newsday about the upcoming transplant. The editors agreed to do a story on us, and it made the front page.
This opened the floodgates, with dozens of other news organizations wanting to cover the story. Hospital security had to keep reporters from getting to our rooms. The publicity was extremely positive. Articles and television news reports described the wonder of a wife-to-husband organ donation.
The fact that the transplant would take place on our anniversary gave it a heartwarming human interest angle.
Adding to the positive feelings of the whole experience was the fact that many relatives from both sides of our family traveled to Westchester to support us. More important, they supported our eight-old son Andrew, who had to endure the trauma of both parents undergoing major surgery at the same time.
On the evening before the operations, we all went to the hospital chapel to pray. The feeling of love was overwhelming. I remember feeling a tremendous sense of confidence and peace, that this was destiny and we were in good hands.
The transplant was a success, and my new kidney—which as I noted in an earlier post we nicknamed “George”—has been working great ever since. For sure, as readers of this blog know, there have been some ups and downs in terms of medical issues. But overall I’ve been blessed to have a working kidney.
Last week on October 25, Reneé and I celebrated 37 years of marriage as well as my 28th “rebirthday”. Back in 1995, I don’t think either one of us could have imagined things going this way. It’s a blessing, for sure.
Gratitude in Abundance
There’s plenty to be grateful for here. I’m grateful to Reneé for her selflessness and boundless love in stepping forward to be my donor. People throw the word “love” around a lot these days: I love pizza. I loved that movie. I’d love it if you could give me a good recommendation.
In this case, love is as appropriate a word as you could use. Donating an organ is inherently an act of love.
My gratitude also extends to our families for being there in our time of need. I’m also grateful for the healthcare staff and for the support of friends and coworkers. I’m grateful for the dialysis treatments that kept me around for years until I could get a transplant. And I’m grateful for the news media for spreading the good word about organ donation.
I’m keenly aware of how much organ donors are needed. My brother Paul also has PKD. He was diagnosed while being tested as a possible kidney donor for me in 1995. His kidneys have almost reached the stage where they are no longer functional, and the best remaining treatment option is a transplant.
Paul is one of numerous patients on the waiting list for an organ transplant. The National Kidney Foundation says the current average wait time for a kidney transplant is three to five years. Receiving a kidney from a living donor will greatly improve his chances of leading a healthy life.
If you know of someone who might be interested in donating or if you would like to learn more, please contact Libbie Binkiewicz, Community Relations Program Manager at Northwell Health Department of Transplantation, 516-666-0899, LBinkiewicz@northwell.edu.
Organ transplantation is a medical miracle that saves the lives of countless individuals, myself included. Recipients can go on to live productive, even exceptional lives. And while all of us recipients are unique, we have one thing in common: endless gratitude for our donors and their ultimate acts of generosity and love.
“So faith, hope, love abide, these three; but the greatest of these is love.”— 1 Corinthians 13
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