The risk to Kidney Donors: A Patient Perspective

Once again NephJC is proud to have transplant recipient and patient advocate Kevin Fowler present his views on the safety of kidney donation for our NephJC discussion.

The subject of living donation is deeply personal to me. Next to my wife and our two children, the greatest gift I have received in my life is my living donation kidney. Through my donor Christine’s selfless act of love, she restored my health, and enabled me to have a preemptive kidney transplant. @@Because of her powerful decision, I have been able see our children grow up@@, and I have worked every day since 2004.

Christine also healed me emotionally. Let me explain how. During the span of 18 months in 1986-1987, we lost half of our family. While on dialysis and never smoking, my mom developed lung cancer and died at the young age of 52.  Just 18 months later, my sister Carol graduated from college, and one month later she was killed by a drunk driver. She was only 23 years old. For my Dad, my sister, Joanne, and me our life was in ruins. Emotionally, we were devastated.

Fast forward to 2004, and I was notified by my transplant team that my renal function decline was accelerating, and that it was time to schedule my transplant and find a living donor. My wife, Kathy, developed a communication strategy that informed our friends of our situation. The implementation of this strategy and conversations I had with friends resulted in 14 people offering to be living donors. Every time I think of this generosity of spirit, I become emotional.

In the United States, there is a concerted and coordinated effort to increase living kidney donation to increase the supply of available organs for kidney transplantation. While I am supportive of this effort, this article brings up an important point. Does the transplant community fully understand the long-term risks of living kidney donation? The authors of this study should be applauded by comparing a healthy cohort of patient vs living donors.

As has been suggested by members of the transplant community, the best approach to understanding long-term risks to donors is to have a living donor registry.  An investment in a registry would answer many questions and help make the best decisions possible.  For that matter, the US still needs a transplant registry such as the one used in Australia and New Zealand, 

Although my donor faced many challenges to donating her kidney, she still persevered. Her employer was completely unsupportive of her donation efforts.  She was forced to take unpaid leave which would have resulted in the lost of thousands of dollars. Fortunately, my family and friends donated money that covered her lost income. Even without my this support, Christine still would have gone forward with the donation even if cost her financially. Think about that for  a moment.

“The donors are true heroes who have made great sacrifices in order that others may live.  For far too long, they have not received the proper support they have earned.”

This article underscores a larger issue of donor recognition, both living and deceased. The donors are true heroes who have made great sacrifices in order that others may live. For far too long, they have not received the proper support they have earned. I have made two recommendations to protect living donors:

  1. Living Donor Registry:  If the strategy to solve the kidney donation demand is living donation, then a living donor registry is needed.  It would help guide decision making and protect the health of living donors
  2. Living Donation Act:  I support the Living Donor Protection Act (H.R. 5263) introduced by Representative Jerrold Nadler (D-NY), along with Representative Michael Burgess, MD (R-TX) to promote organ donation and protect the rights of living donors. This bill prohibits insurance companies from denying or limiting life, disability and long term care insurance and from charging higher premiums to living organ donors. The bill also clarifies that living organ donors may use time granted through the Family and Medical Leave Act (FMLA) to recover from transplant surgery and finally, the bill directs the department of Health and Human Services to add information on these new protections to its materials to encourage more Americans to consider living donation.

I would love to hear your response to my recommendations.