Transplantation: Increasing Living Donation

Kevin’s story

Fowler: In December 2000, I began to notice lower back pain. Initially, I attributed the pain to carrying large amounts of wood to our fireplace, but in the back of my mind, I knew the source of my pain could be something else. My deceased mother had polycystic kidney disease (PKD). I saw her suffer from constant back pain due to the enlarged size of her kidneys caused after PKD. Up until this time, I never had the courage to determine if I too had PKD. I was too scared after seeing how my mother suffered with both the disease and with her dialysis treatment.

Now I needed to determine if I too had PKD. I was 39 years old and had been married to my wife, Kathy, for 5 years. We had two children: Kelley, 3 years old, and Jack, 8 months old. Right after Christmas, I asked my primary care physician (PCP) to schedule an ultrasound test for January 2001. Once and for all, I would learn whether I had PKD.

On a bright, sunny January morning, our lives were changed forever. The ultrasound test revealed that my kidneys were consumed with PKD cysts, and my PCP informed me that I would be on dialysis or need to have a transplant within the next 3 to 5 years. When I shared the news with Kathy, we both broke down crying. As a family, we faced a very uncertain future.

My PCP offered to make a nephrology referral to a community-based nephrologist. At that time, I was working in the pharmaceutical industry as a District Manager in St. Louis and had developed a friendship with a gastroenterologist at Barnes–Jewish Hospital. I called my physician friend and explained my situation to him. He referred me to a Barnes–Jewish Hospital nephrologist.

I had my first appointment with the nephrologist on March 6, 2001, which was, coincidentally, my mother’s birthday. Before the appointment, Kathy and I were very nervous. Frankly, I was convinced I would be facing the same fate as my mother.

What happened at that first appointment exceeded my wildest expectations. My doctor said it would be approximately 5 to 7 years before my kidneys failed. When my kidneys did fail, he recommended that I have a preemptive kidney transplant and avoid dialysis completely. He explained that a preemptive kidney transplant was the best treatment option for the following reasons:

  

1. By avoiding dialysis, I would be relatively healthy compared with dialysis patients who were waiting for transplants.

  

2. I would avoid development of antibodies that patients develop on dialysis. The antibodies make it more difficult for the body to accept a transplanted kidney.

  

3. Because I had several years before I needed a transplant, I had time to find a living donor before the need for dialysis.

When I left the doctor’s appointment, I thought I had won the lottery. You mean you don’t have to be on dialysis first before you have a kidney transplant? Are you kidding me? Now I was facing a future with a little more certainty. My kidneys were going to fail, but I did not have to go on dialysis. Although my fear remained, I knew what treatment option we would choose.

Unfortunately, my kidney function declined much faster than anticipated. In January 2004, my nephrologist notified us that I would need to be transplanted within the next 12 months and needed to find a donor. The problem was we had no idea how to find a donor. Until this time, I had not shared my medical condition with anyone other than my family and a handful of very close friends. Now my wife reminded me that I would have a difficult time finding a donor if I was unwilling to share my medical condition. She had a point.

Thanks to Kathy’s leadership, we developed a communication strategy to find a living donor. Kathy wrote letters to many of our friends and family notifying them of my medical condition. I chose to call friends and co- workers to update them on my situation. I was motivated to relieve myself of this emotional burden I had kept secret for over 3 years. Although the intent of our communication was to alert our friends to my medical condition, it resulted in 14 people offering to be a living donor. Every time I think of their generosity of spirit, I am humbled.

What initially started out as a very scary and overwhelming situation became one of the most beautiful chapters in our life: August 5, 2017, will be the 13th anniversary of my kidney transplant.

What are some barriers to increasing living donation?

Charlton: Barriers to living donation for any one donor may be multifactorial: financial, psychosocial, medical, and/or cultural. For many patients, these barriers may seem insurmountable. However, living donor professionals can often provide insight and assist with solutions to overcome many of the perceived barriers.

Financial barriers

The medical evaluation, surgery, and hospital stay for the donor are covered by the recipient’s insurance. However, donors may experience out of pocket expenses that create an obstacle to donation. Financial resources to assist with travel and lodging expenses are available through the National Living Donor Assistance Center (1) and the American Kidney Fund (2). These resources are limited, and therefore, donors and recipients must meet eligibility criteria through means testing. Expansion of the National Living Donor Assistance Center to include nondirected donors and to eliminate or broaden means testing for recipients would reduce financial burden by allowing more people to access these resources (3). At this time, there is no mechanism for most donors to receive reimbursement of lost wages. This alone may be the most significant obstacle to living donation. Recommendations from the 2014 Live Donor Consensus Conference suggest that financial neutrality for living donors must be achieved for the number of living donations in the United States to increase (4).

Psychosocial barriers

Psychosocial barriers may present in several different ways. Lack of support from immediate family; significant history of drug or alcohol abuse; and fear of pain, surgery, and the long-term unknown are but a few of the emotional barriers to living donation. Access to living donor professionals early in the process who provide education and recommendations may allow a potential donor to overcome these barriers and proceed with living donation.

Medical barriers

All living donors undergo a comprehensive medical evaluation to ensure they are both medically and psychosocially suitable to donate. The safety and well-being of the living donor are of primary importance, and living donor professionals are risk averse when providing final clearance to proceed with living donation. During the evaluation process, obstacles (i.e., high body mass index or a mildly elevated hemoglobin A1c) may surface, and with appropriate treatment and guidance, these may be resolvable and allow the donor to move forward. Education at a community level that dispels misconceptions regarding medical exclusion criteria for living donors may encourage donors to come forward who otherwise may not consider themselves acceptable candidates.

Cultural barriers

There are many barriers to organ donation among minorities. These include decreased awareness of transplantation, cultural mistrust of the medical community, financial concerns, and fear of the transplant operation (5). Culturally sensitive education on both national and community levels geared toward these barriers may ameliorate disparities and improve access to living donor transplantation (6). Community-based organizations can also play a part in providing education and support to potential donors. One of the main benefits of such organizations is their understanding of the unique barriers within their community.

What recommendations can you share to increase the likelihood of a living donor transplant?

Fowler: Here are some suggestions:

 

1. Early nephrology referral I referred myself to a nephrologist when I had stage 3 chronic kidney disease (CKD). This early referral allowed time to arrange a preemptive transplant.

2. Knowledge of kidney function Less than 10% of patients with stage 3 CKD are aware of their impaired kidney function. This means that 40% of patients initiate treatment in crisis mode and underscores the need for policies that reward early detection of CKD.

3. Dialysis versus transplantation I do not believe that patients are fully informed of their life expectancy when they initiate dialysis. This lack of transparency inhibits patients from seeking information on all available treatment options.

4. Medicare Part B ESRD benefit reform The original intent of the Medicare part B ESRD benefit was to ensure access to dialysis, which could then serve as a bridge to kidney transplantation. Because of unforeseen demographic changes and financial incentives for dialysis treatment, dialysis is no longer just a bridge to transplantation but a final destination. Reform should include rewards for risk-benefit conversations, shared decision-making, and placing the patient at the center of care.

How does one find a living donor?

Reiner: Early engagement in the quest for a donor is critical. It is important for a recipient’s support team to come together and strategize about how best to communicate the need for a donated organ. Creating an advertisement explaining the need for a donor that can be sent out via an email chain and using social media to spread the message can be very effective tools in this campaign.

Fowler: I cannot overestimate the important role my wife Kathy had in finding my donor. Like many kidney disease patients, I was afraid of sharing my situation with others. She taught me to be open to others and accept the help and love they offered.

How can the transplant community increase living donation?

Reiner: Many people are not aware of what kidney donation entails. They do not realize this is something that ordinary people are doing. It is important to be knowledgeable about all of the steps in the process to answer any basic questions. Understanding the process helps potential donors be more comfortable in taking the next step: calling the transplant center.

Charlton: The key component in overcoming real and perceived barriers to living donation is early access to the evidence-based education of transplant professionals who can provide guidance, recommendations, and support to allow the potential donor to proceed.

February 2018 (Vol. 10, Number 2)

References

1. National Living Donor Assistance Center. https://www.livingdonorassistance.org/.

2. American Kidney Fund. http://www.kidneyfund.org/.

3. Hays RE, et al. Barriers to the use of a federal travel grant by living kidney donors. Clin Transplant 2017, in press.

4. Tushla L, et al. Living-donor kidney transplantation: Reducing financial barriers to live kidney donation—Recommendations from a consensus conference. Clin J Am Soc Nephrol 2015; 10:1696–1702.

5. Hinck BD, et al. Assessing transplant attitudes: Understanding minority men’s perspectives on the multifarious barriers to organ donation. J Racial Ethn Health Disparities 2017; 4:580–586.

6. Bratton C, Chavin K, Baliga P. Racial disparities in organ donation and why. Curr Opin Organ Transplant 2011; 16:243–249.