Nancy and Barbara on a chairlift
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.

The local Organ Procurement Organization (OPO) that arranged for the donation is the agency that would manage any after-transplant communications between the two parties.

Here’s what typically transpires: Initial contact is made through the exchange of anonymous letters of introduction.  Traditionally, the recipient wants to thank the donor family, while the donor’s family wants to learn a bit about the recipient and the success of the transplant.

For most people, exchanging these letters will be enough. Others will want to keep writing.  Back-and-forth written communication is encouraged, but only if a willingness exists on both sides.  At each step, families are advised to take their time and move slowly.  Both families are healing and the process should not be rushed.

In the case of donor Brett Manual’s family and recipient Brent Snyder, they communicated for several years by letter, phone calls and skype before they met.

That in-person meeting, if it takes place at all, usually happens long after the transplant.  Again, protocol requires it must be a mutual decision by both parties.  A neutral meeting place is suggested and a facilitator is recommended as a safety net for both parties.

Donor families often describe mixed feelings.  They are amazed their loved one saved a life – perhaps several lives – and they can experience a powerful connection to the recipient.  For their part, recipients say they have an almost overwhelming sense of gratitude.

Meeting is not right for everyone.  It can spark painful memories for the donor family and sometimes feelings of survivor guilt for the recipient.  Recently, I asked my sister if she had thought about the possibility of meeting a donor family.

“Right now that sounds overwhelming,” she told me.  “I just can’t think about it.”

Her attitude is understandable. Physicians have given her only a few years to live without a transplant, so most of her energy goes toward staying alive. However, I know my sister, and I’m betting that if she does have a successful lung transplant she will eventually want to learn about her donor and possibly meet his or her family.

Back in our lung transplant support group, I learn there are recipients who have done just that.  They seem in awe and use words like ‘healing,’ ‘moving,’ and ‘cathartic’ to describe the experience.

Transplantation is truly a modern medical miracle.  It may give my sister another decade or more of life.

If Barbara does receive new lungs, she has learned she can become a donor herself by donating her diseased lungs for medical research.  This is something we’ve never considered, and it gives us a feeling of doing something good.  Perhaps her damaged organs will help with a medical breakthrough.  Anything is possible.

Until then, the elephant is still sitting quieting in the corner, and we wait for the phone call that will tell us a gift of life is available for my sister.