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Caregiving

My Sister's Lungs, Part Two: Someone Has to Die for My Sister to Live

Editor’s Note: In the second part of a five-part series, thirdAGE contributor Nancy Wurtzel (at left in the above photo) shares the ordeal her sister Barbara (at right in the above photo) is undergoing as she waits for a match for a lung transplant. Barbara’s situation is complicated by the fact that her husband, Jim, has Alzheimer’s. Additionally, the sisters’ mother is suffering from dementia as well. Here is the story of a family on a frightening, grueling healthcare journey of the kind that will be all too familiar to millions of Americans. For the first  installment, click here. For an article by Nancy on the transplant issue overall, click here.

By Nancy Wurtzel

During every doctor visit, test and meeting there’s an elephant in the room.  He’s like a big, murky figure sitting off to the side, silently waiting.  At night, when I’m trying to sleep, I feel as though that elephant is sitting on my chest.

Of course, the elephant isn’t real, but he does represent something big, something that will forever change two families.  It’s the fact that someone must die so my sister, Barbara, will  receive donor lungs and the possibility of a longer, healthier life.

Each week we attend a lung transplant support group meeting.  At a recent gathering, the topic of donors and recipients was discussed.

One woman, whose husband had a lung transplant eight years ago, reminded attendees that an organ recipient does not cause a death. That death would have occurred regardless. The transplant is the good that comes from that death.

Intellectually I know this.  However, the enormity is still hard to fathom: So much pain and sadness for one family, relief and hope for another.

Last year, there were just over 30,000 transplants performed in the U.SThe faces and stories behind these transplants are amazing.  One story, in particular, caught my attention.  Featured on ABC News in 2015, the segment chronicled the story of 22-year-old Brett Manuel of Houston, Texas who served a tour of duty in war-torn Afghanistan, but back in the U.S. he died two years later in a car accident.  Brent Snyder, at the time a Florida college student, was born with cystic fibrosis and needed a transplant.  Brent was the recipient of Brett’s lungs.  The emotional and moving meeting between the donor family and the recipient family is something to see.

I was surprised to learn the number of recipients who meet their donor’s family is very, very small, probably around five percent.  In fact, face-to-face meetings between the donor and recipient families are a relatively new event. For decades, it was considered inadvisable and rarely took place.

For good reasons, strict confidentiality rules govern organ donation, and these guidelines will always remain in place. However, communication between donor and recipient families is starting to change.

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