2
I n January 2007, after fighting for nearly a year for the opportunity, I became a nontraditional living kid- ney donor through an intimate tribute to my aunt who died of renal failure at the untimely age of 31. I was 14 years old when she became ill and was dismissed as a candidate for donation because of my age. Following the funeral, 18 years ago, I defied my mother with the statement, “I won’t always be fourteen” and set it in my mind that one day I would make a difference to some- one. On January 15th, 2007, at the age of 31, for obvi- ous reasons, I donated a kidney in memory of my aunt. My mother set her fears aside and joined me as she offered her support and cared for me throughout my recovery. Last month, my recipient and I celebrated the 1- year anniversary of our transplant. God willing, he will walk his daughter down the aisle, attend his son’s high school graduation, live to know his grandchildren, and grow old with his beautiful wife. As amazing as this journey has been, few people understand the obstacles that I faced as I pushed for- ward in my resolve to make a difference. The transplant community is leery of nontraditional organ donors and few transplant programs nationwide support nontradi- tional/altruistic gifts or have protocols that allow for this approach to donation. I have been blessed with a unique perspective and felt pressed to share my experience with the hope of encouraging change. In February 2006, I approached my local trans- plant center with the intention to donate anonymously to someone on the transplant waiting list. I was shocked when I was refused the opportunity. I was a perfectly healthy middle-aged woman, offering somebody a sec- ond chance at life, and I was being turned away. In an effort to find an alternative means to accomplish my goal, I began to do some research. It didn’t take long to discover that very few nontraditional donor programs exist nationwide that would allow what I was trying to accomplish. Additionally, I was not prepared for the attitude and reaction of various clinicians who managed our case. Rather than embrace my desire to share life, I was treated as though I was trying to bypass the system and disregard hospital protocols. These protocols only provided the means for donors to donate to someone with whom he or she had an “established relationship.” As a registered nurse, I had experience in urology and surgical intensive care, taking care of both post- nephrectomy patients and transplant recipients. I under- stood the risks involved, had waited 17 years to pursue my goal, and was determined not to be told “no” again. The solution seemed obvious . . . I would have to “estab- lish a relationship” with someone on the transplant list. In an effort to make a difference on behalf of those waiting for a lifesaving transplant, I initiated the Share Life Foundation and used the media to raise awareness about the need for nontraditional donor programs and my desire to be a living donor. The media attention gen- erated an outpouring of support for the cause and numer- ous e-mails flooded the foundation. In an effort to be an equal-opportunity donor, I decided to “establish a relationship” with the first person on the transplant list who e-mailed the foundation with a compatible blood type. The first e-mail that I received came from the wife of a dialysis patient who had been on the waiting list for 2 years. She graciously offered her support and volunteered her services to the foundation. I became acquainted with the family through a series of e-mails and telephone calls. After we had “established a rela- tionship,” I contacted the transplant center, this time with the intent of donating to a specific individual. Once again, I was told that I would not be allowed to donate. The protocols were not only limited to those donors and recipients who had an established relationship; the relationship had to be “preestablished.” In short, I was told that I could not donate to someone who I had got- ten to know for the sole purpose of donating a kidney. At this point, the process seemed ridiculous. I was frustrated, angry, and determined in my resolve to become a living donor. I threatened to use the media in a follow-up story that would illustrate the hospital’s policy and my subsequent fight for the right to donate. With a combination of time, patience, and a great deal of persistence, the screening process was initiated by the local transplant center. My blood was drawn for tissue typing, and within a few weeks I was contacted with the results. We were a suitable match, and I would be allowed to move forward with the psychosocial and physical components of the evaluation. Our celebration was short lived, however. As soon as the screening was initiated, the years of dialysis took a toll on my recipient’s health. He had developed a heart condition that required placement of a stent and pace- maker. He was informed that it would be 6 months before he would be medically suitable for transplant. Living donors: personal perspective of a nontraditional living donor Christina Bryant, RN, PTC 1 Progress in Transplantation, Vol 18, No. 2, June 2008 Brief Communication

Progress In Transplantation Article

Embed Size (px)

DESCRIPTION

Article written and published in June 2008 on non-directed donation in the medical journal, "Progress In Transplantation" Transplantation".

Citation preview

Page 1: Progress In Transplantation Article

In January 2007, after fighting for nearly a year forthe opportunity, I became a nontraditional living kid-ney donor through an intimate tribute to my aunt whodied of renal failure at the untimely age of 31. I was 14years old when she became ill and was dismissed as acandidate for donation because of my age. Followingthe funeral, 18 years ago, I defied my mother with thestatement, “I won’t always be fourteen” and set it in mymind that one day I would make a difference to some-one. On January 15th, 2007, at the age of 31, for obvi-ous reasons, I donated a kidney in memory of my aunt.Mymother set her fears aside and joinedme as she offeredher support and cared for me throughout my recovery.Last month, my recipient and I celebrated the 1-

year anniversary of our transplant. God willing, he willwalk his daughter down the aisle, attend his son’s highschool graduation, live to know his grandchildren, andgrow old with his beautiful wife.As amazing as this journey has been, few people

understand the obstacles that I faced as I pushed for-ward in my resolve to make a difference. The transplantcommunity is leery of nontraditional organ donors andfew transplant programs nationwide support nontradi-tional/altruistic gifts or have protocols that allow forthis approach to donation.I have been blessed with a unique perspective and

felt pressed to share my experience with the hope ofencouraging change.In February 2006, I approached my local trans-

plant center with the intention to donate anonymouslyto someone on the transplant waiting list. I was shockedwhen I was refused the opportunity. I was a perfectlyhealthy middle-aged woman, offering somebody a sec-ond chance at life, and I was being turned away. In aneffort to find an alternative means to accomplish mygoal, I began to do some research. It didn’t take long todiscover that very few nontraditional donor programsexist nationwide that would allow what I was trying toaccomplish. Additionally, I was not prepared for theattitude and reaction of various clinicians who managedour case. Rather than embrace my desire to share life, Iwas treated as though I was trying to bypass the systemand disregard hospital protocols. These protocols onlyprovided the means for donors to donate to someonewith whom he or she had an “established relationship.”As a registered nurse, I had experience in urology

and surgical intensive care, taking care of both post-

nephrectomy patients and transplant recipients. I under-stood the risks involved, had waited 17 years to pursuemy goal, and was determined not to be told “no” again.The solution seemed obvious . . . I would have to “estab-lish a relationship” with someone on the transplant list.In an effort to make a difference on behalf of those

waiting for a lifesaving transplant, I initiated the ShareLife Foundation and used the media to raise awarenessabout the need for nontraditional donor programs andmy desire to be a living donor. The media attention gen-erated an outpouring of support for the cause and numer-ous e-mails flooded the foundation. In an effort to bean equal-opportunity donor, I decided to “establish arelationship” with the first person on the transplant listwho e-mailed the foundation with a compatible bloodtype. The first e-mail that I received came from the wifeof a dialysis patient who had been on the waiting listfor 2 years. She graciously offered her support andvolunteered her services to the foundation. I becameacquainted with the family through a series of e-mailsand telephone calls. After we had “established a rela-tionship,” I contacted the transplant center, this timewith the intent of donating to a specific individual. Onceagain, I was told that I would not be allowed to donate.The protocols were not only limited to those donorsand recipients who had an established relationship; therelationship had to be “preestablished.” In short, I wastold that I could not donate to someone who I had got-ten to know for the sole purpose of donating a kidney.At this point, the process seemed ridiculous. I was

frustrated, angry, and determined in my resolve tobecome a living donor. I threatened to use the media ina follow-up story that would illustrate the hospital’spolicy and my subsequent fight for the right to donate.With a combination of time, patience, and a great

deal of persistence, the screening process was initiatedby the local transplant center. My blood was drawn fortissue typing, and within a few weeks I was contactedwith the results. We were a suitable match, and I wouldbe allowed to move forward with the psychosocial andphysical components of the evaluation.Our celebration was short lived, however. As soon

as the screening was initiated, the years of dialysis tooka toll on my recipient’s health. He had developed a heartcondition that required placement of a stent and pace-maker. He was informed that it would be 6 monthsbefore he would be medically suitable for transplant.

Living donors: personal perspective of anontraditional living donorChristina Bryant, RN, PTC

1 Progress in Transplantation, Vol 18, No. 2, June 2008

Brief Communication

Page 2: Progress In Transplantation Article

He called me with the news, devastated and concernedthat I would choose to donate to someone else. Iresponded without reservation, “This kidney is gettingperfect preservation . . . I’ll be ready when you are.”Some changes took place during the 6 months that

followed. The transplant center established the neces-sary protocols that would allow nontraditional donors,and my recipient and I were contacted about the oppor-tunity to participate in the program. On January 15,2007, I became a nontraditional living donor.

In March of last year, after the surgery, a positionopened for a procurement transplant coordinator withour local organ procurement organization. I applied,and shortly thereafter, joined the clinical team. Becauseof this opportunity, I am able to incorporate my pas-sion for organ donation into my clinical ambitions.Ironically, my professional roles and responsibilitieshave afforded me the opportunity to establish rela-tionships with the surgeons that I had adamantly dis-agreed with in the past. I have the utmost respect forthem and I value the remarkable work that they do, but

I will never quit hoping that time will bring a freshperspective and a season for change. I look forward tothe day when nontraditional organ donation will notonly be allowed but will be welcomed.As a procurement transplant coordinator, I have

been blessed to witness the best that humanity has tooffer through the lives of those who have loved andtragically lost. Our donor families exemplify great-ness, heroism, and strength when they embrace life,despite death. I strongly believe that those same altru-istic attributes manifest in the lives of the living everyday without regard to tragedy.With nearly 100 000 people on an ever-growing

transplant list and nearly 75% of those individuals wait-ing for a kidney, I think we need to ask ourselves if weare doing all that can be done. Deceased donors alonecannot fill the void. It is time to pursue change, open ourminds to new possibilities, adopt a new perspective, andembrace the benefits of nontraditional organ donation.If we’re ever really going to make a difference,

we’ve got to change the way we think.

Progress in Transplantation, Vol 18, No. 2, June 20082