The best thing about July 26, 2011 was that it was the most ordinary of days. No surprises, just routine.
Above all, a far cry from that same date 10 years ago.
When a cheery postcard inviting our family to New York Presbyterian/Columbia University Medical Center’s Circle for Life: Renal 3,000, Celebrating 3,000 Kidney Transplants, landed from the mail slot on my kitchen floor, I was suddenly back in the pre-op rooms, recalling the early morning hours of July 26, 2001. Was it simply that the place was meat-locker cold that I could barely control my shaking?
There is no parenting manual to prepare you how to reassure your teenager she will one day look like herself again. That she will survive transplant surgery, that her father’s kidney will work in her body. That her two years of hemodialysis and peritoneal dialysis will really be behind her. That it won’t be long before she can once again take her ballet class, audition for the school play, and hang out with her friends, without feeling exhausted all the time.
There is no marriage handbook guiding you how to maintain your sense of humor – and his – when you see your husband shivering in a thin hospital gown, a large purple X marking the spot for the cut to remove a vital organ.
Jane's daughter, with her father and kidney donor, two years before the illness that caused end stage renal disease and led to her transplant in 2001.
What a luxury, as the 10th anniversary of my middle child’s transplant approached, to be able to gaze in the rear-view mirror. Do I need to mention she has a smile that lights up a room? That her observations challenge me to think, that she also makes me laugh all the time?
As I reflected on this milestone, I knew I wanted to find a meaningful way to mark it. Fundraising is not generally my “thing.” So it was with some trepidation that I reached out last January to family and friends with a very personal appeal. I asked them to join me in supporting renal transplant research and a Department of Surgery fund to assist indigent patients with the cost of medications and travel to the medical center for follow-up care. The donations, I explained, would be in honor of the surgeons, nephrologists, transplant coordinators and other professional staff involved in our family’s transplant experience.
The result, I’m thrilled to share, was more than $12,000 raised, more than $2,000 over our goal.
It’s no secret that the limited supply of organs for transplant is the biggest obstacle to treating end-stage renal disease. But thanks to continuing research, about 250 renal transplants take place at NewYork-Presbyterian/Columbia every year, compared to the handful performed when Mark Hardy, MD, my daughter’s transplant surgeon, began the program in 1975. More recently, to increase access to transplantation, NYP/Columbia has been proactive in arranging donor swaps among unrelated living donors, and in researching ways to increase the chances of successful transplant between incompatible donor-recipient pairs. To alleviate the shortage long-term, alternative sources of organs for transplant (stem cells, xenografts) are already being investigated. These are among the scientific frontiers yet to be conquered, but possible within my daughter’s lifetime.
There have also been important changes in immunosuppressive therapies, minimizing the chances of rejection and the side effects of medication. Donor surgeries, too, have improved. My husband’s impressive scar is a relic. Since around 2002, laparoscopic, minimally invasive, surgery, to remove a kidney, with minimal scarring, has been the norm.
These advances have meant that every year, more and more people reach the milestone 10th anniversary after transplantation. What a cause for celebration. And what an opportunity: I would love to help other families like mine launch similar campaigns.
There is no telling what is on the horizon, what a difference our collective efforts can make to our loved ones and to so many others. It reminds me of my favorite quote, a reaction by the sculptor Alexander Stirling Calder to his son Alexander’s “new-fangled” brand of art, mobiles and stabile sculptures: “One must never stop moving in a world so full of wonders.”
Jane R. Calem is a communications consultant to non-profit organizations in New York City.
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