By Peter Laird, MD
There is nothing more tragic than outcomes that happen to you personally. Doctors are fond of statistics when discussing the risks and benefits of any given procedure, but statistic fail to take into account the fact that when an adverse outcome does occur, it is an 100% occurrence for that individual. Renal transplantation is universally heralded as the best option for renal replacement therapy for those with ESRD especially with a preemptive transplant from a living donor. Sadly, the donors story is seldom followed more than a few months. There is no registry to follow these patients to know the outcome of that donation. Dr. Brenda Mayne placed a comment on my post: First Do no Harm: The Living Renal Donor Dilemma, where among other things, I reported on the very first renal transplant that succeeded in this nation with the Herrick twins. I would urge all to consider not only her personal story, but to also note an interesting historical fact about the first transplant donor that I was completely unaware.
As a living donor 8 months out from surgery, I am horrified at my own lab values (GFR = 34) and what I see as my transplant center's blase assumption that I would be fine despite
predonation eGFR = 67. As a 49 year-old woman, I am now facing a lifetime of kidney disease. During screening, transplant staff repeatedly asked if I was clear on how serious the donation would be, but when I asked exactly what it would mean for my health every staff member told me that living donors - particularly white women like myself - had no difficulties. No one shared my questionable labs with me - or with my recipient who now has a lower GFR than she had prior to transplantation.
The article above describes Ronald Herrick, the first living kidney donor, as having an "exceptional" life; it fails to mention that Herrick spent the last decade of his life in ESRD and on dialysis. In reporting his death from cardiac failure, the connection between kidney donation, kidney disease, and cardiac disease is not mentioned.
Until Nephrologists step up as a profession and demand strict criteria for living donors, living donation is dangerous and unethical. Criteria should include screening by outside nephrologists; my screening was done by the nephrologist who follows the Transplant Center's recipients. Criteria should include an estimate of the amount of renal capacity expected to be lost over the donor's lifetime with criteria adjusted so that younger donors are protected. Criteria must use realistic expectations for the donor's ability to hyperfiltrate/hypertrophy. My center told me, after surgery, that they expected me to compensate 100% - at age 49! Criteria must also include assessment of the other organ systems affected; nephrologists can inform both professionals (surgeons) and patients of the multiplicity of ways the kidneys affect the body - rather than simply producing urine. You have more patients than you can care for as a profession. Protect us, the living donors, so that there are not more patients like myself.
Brenda Mayne, Ph.D
The untold story today is that of the living renal donor, before they donate and after when most are lost to follow up within 1-2 years of their surgery. An even more forgotten group of people that we almost never hear about are those patients that die from the donation procedure itself:
The notes from the August, 2010 ACOT meeting include a statement by Dr. Feng of the Cleveland Clinic Foundation regarding "four reported deaths in kidney donors this year in the U.S." While some would argue that not all living donor deaths are the result of the procedure, Feng is referring to those which have been attributed to the surgery itself. He also said, "The fact that there were four kidney deaths with almost no publicity is...problematic." (171) We agree.
American nephrology is emerging as a house of cards when we consider the lack of true informed consent on home hemodialysis options and on the risks of renal transplantation and living renal donation. (here, here, and here) When I was entering the confines of the world of ESRD, the mantra I heard over and over again was I had to have a transplant from my entire nephrology medical team and essentially every one of my colleagues in the Internal Medicine and Family Practice departments. I only had one nephrologist in the last two years of my illness prior to initiating dialysis discuss the home dialysis option as a primary treatment option. He likewise discussed preemptive transplant in his consultation as well, but it was his information that started me down the path of home hemodialysis. Dr. Belding Scribner summed up true informed consent as well as I have heard in 1965:
“The adjustment and rehabilitation of patients with any chronic disease are improved by giving them a full explanation of their disease and its treatment and as much responsibility for their treatment as they can accept”
I diligently researched the extensive risks of renal transplant especially in light of my prior cancer history. I had a testicular cancer in my 3rd year of medical school coupled with radiation treatments prophylactically which was the consensus in 1989. I was advised that my risk of cancer nearly recurrence 20 years later was negligible. On my own insistence, I requested a dermatology evaluation understanding the increased risk of skin cancer post transplant and that is when they discovered a very early malignant melanoma. With two cancer scares in my life completely cured by early surgical removal, I am not willing to add any further increased risk of future cancers from the immunosuppressive regimen after transplant.
Even prior to withdrawing from consideration of the renal transplant list, belatedly after I had already had a colonoscopy and cystoscopy as part of my transplant evaluation, I had decided to fore-go a preemptive transplant offered to me by my wife and daughter. My wife has had HTN, elevated cholesterol and some issues with borderline elevations of glucose on a couple of occasions and at the age of 50, I believed she would still need all of the renal function that she could retain for her own health. My daughter had yet to have any children which she has now had her first and a second is on its way now. Dealing with pregnancy and a reduced GFR places both the mother and her child at increased risk. I determined that renal disease was my burden to bare and I would not place another healthy individual at risk for what is my disease after all.
In addition to my recognition of the risks of transplant and the risks of donation for my loved ones, I became aware of the data for daily dialysis showing equal outcomes compared to cadaveric renal transplant. Pauly et al demonstrated this in a widely publicized paper in 2009. Unfortunately, the majority of patients are told that transplant has superior survival to dialysis, which is only true if comparing to in-center dialysis alone. When evaluating short daily dialysis and daily nocturnal applications, Pauly presents data that should also be presented to all living donor candidates as well as trasnplant candidates so that they can compare the benefits of more frequent dialysis directly with transplant:
Results. The total study population consisted of 177 NHD patients matched to 1062 DTX and LTX recipients (total 1239 patients) followed for a maximum of 12.4 years. During the follow-up period, the proportion of deaths among NHD, DTX and LTX patients was 14.7%, 14.3% and 8.5%, respectively (P = 0.006). We found no difference in the adjusted survival between NHD and DTX (HR 0.87, 95% CI 0.50–1.51; NHD reference group), while LTX survival was better (HR 0.51, 95% CI 0.28–0.91).
Today in the glamorous world of high tech renal transplants broadcast almost daily across this nations televisions stations, I would hope that Dr. Mayne's personal testimony of the harm done to her by the lack of informed consent and what would appear to be the doctor's zeal to proceed even when his patient before him already had CKD-2 prior to donation. With the medical community continuing to push the envelope of living donor criteria, it is sobering to note the great harm done to a vibrant professional at the peak of her career. It is equally sobering to learn a new facit to the story of the first renal donor and his own struggle with ESRD. It is time to re-examine the ethics of nephrology that fails so many patients by not giving them all of the information needed to make a true informed consent. It is time, my fellow colleagues in nephrology to first, do no harm.