I received the phone call from my doctor that changed my life when I was only 38 years old. I had End-Stage Renal Disease (ESRD) and would need a kidney transplant within the year, or else begin dialysis until a kidney could be found. I was floored. I thought I was perfectly healthy. In addition, I knew absolutely nothing about kidney disease or organ transplantation. I was blindsided, and my wife and young children were terrified that this disease might result in my early death.
Organ transplantation has come a long way since the early 1960s when Nobel Laureate Frank Burnet predicted that the prospect of such a procedure was not favorable.[1] Organ transplants in the U.S. are up almost 20% between 2012 and 2016 as more types of organs become transplantable and as donor awareness increases. Currently, around 113,000 people are on the national transplant waiting list, and more than twenty die each day waiting for an organ.[2] With the number of organ transplants on the rise, pastors are more likely than ever before to encounter church members who experience organ failure and the illness that results.
Those who face a necessary transplant, and in the case of ESRD the prospect of dialysis until a donor is found, experience a number of emotions and experiences that require spiritual care. First, the fear of the unknown is significant. At the time of my diagnosis, I had no idea what was awaiting me except that my online research uncovered the seriousness of my condition. I learned that I might have to begin dialysis within a short time, a treatment that essentially consumes a person’s life with appointments and chronic fatigue. I might die waiting for an organ. At the time I was working full-time, coaching my children in sports, and had returned to school for my PhD. My life as I knew it might be over.
Pastoral and congregational care for my family and me was critical to help us through this time of uncertainty. We needed someone to come alongside us and regularly offer help and encouragement. My wife was affected even more than I was. Because I could not obtain more life insurance, she faced the prospect of raising children on her own with no financial safety net. The compassion and financial assistance from our church and its members significantly helped to ease our minds as we entered this new phase of our lives.
Second, the physical toll of organ disease is challenging. Once diagnosed, I immediately began a regimen of numerous medications to slow the progress of my ESRD, which helped stave off my need for a transplant for five years. I soon encountered physical symptoms and medication side effects that became increasingly difficult. My diet necessarily became severely limited. I began to itch all over as waste built up in my bloodstream. I struggled to concentrate, and my mental clarity declined (while working on my doctorate!). I gained weight and my face became bloated. The declining function of my kidney raised my blood pressure, and my hypertension medication produced dizziness, light-headedness, and decreased endurance. I required more sleep, and as time went on, I was beset with debilitating fatigue. Both before and after the transplant, the number of hospital and doctors’ visits were beyond count. I felt like I was 70 years old.
It is very easy for those waiting for organs to become depressed and anxious. Their health is taken from them, and they have no energy or motivation to fight it. What used to provide enjoyment is now beyond their reach physically and emotionally. They wait for a phone call that will save their lives, and that wait can be long. The average wait time for a heart is nine months,[3] for a liver, fifteen months,[4] and five years or more for a kidney.[5] Pastoral care during this time is critical, as organ disease can affect otherwise healthy people who are not prepared to endure the experience. Patients can be as young as infants and teens, requiring care not only for the patient, but the family as well.
Third, many transplant recipients experience a sense of guilt. With few exceptions, only kidneys and livers can be donated by live donors. The other four major transplantable organs (heart, lungs, intestines, and pancreas) require the death of the donor. More than 80% of donated kidneys come from patients who have died. Those who receive organs from deceased donors (called cadaver organs) often feel a sense of guilt that someone else had to die for them to live. Hospitals and donor organizations take great care to maintain the privacy and anonymity of the donor, but sometimes the timing of an available organ is easily linked to a local tragedy.
Pastors can help recipients by encouraging them not to blame themselves or feel that they must earn the gift of life given to them by the deceased. While it is noble to want to honor the sacrifice of the donor, too much attachment to this idea can lead a recipient into depression if she fails to meet her own self-imposed standard of worthiness. Pastors can redirect the person’s attention to living before God (and not the donor) as a grateful recipient of two gifts of sacrificial grace—Jesus’ atoning work and the organ. Rather than getting caught up in trying to repay the gift of life, they can be encouraged to simply live with daily gratitude to God and the donor.
By understanding the physical and emotional experiences of those who wait for and receive organ transplants, pastors can play a critical role in counseling and encouraging members through such a significant, life-changing medical condition.
Resources
[1] Thomas E. Starzl and Leonard Makowka, “Organ Transplantation—Then and Now,” Hospital Physician 23, no. 8 (1987): 28–36; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2975407/.
[2] U.S. Department of Health and Human Services, “Organ Donation Statistics,” organdoner.gov, January 2019, https://www.organdonor.gov/statistics-stories/statistics.html.
[3] Benjamin A. Goldstein et al., “Assessment of Heart Transplant Waitlist Time and Pre- and Post-Transplant Failure: A Mixed Methods Approach,” Epidemiology 4, no. 27 (2016): 469–476, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4892941/.
[4] Kimberly Fernandez, “Fewer Liver Transplant Candidates Will Die on the Wait List,” Hepmag.com, June 8, 2015, https://www.hepmag.com/article/liver-transplant-waiting-27230-1939679397.
[5] Living Kidney Donors Network, “The Kidney Transplant Waiting List,” lkdn.org, accessed March 20, 2019, http://www.lkdn.org/kidney_tx_waiting_list.html.