Submitted by Kelly L Nottingham, MPH
Hearing the words from a doctor that ’You need a kidney because your kidney function has declined significantly’ is not what you ever want to hear in reference to you or a family member. In early 2014, our family was confronted with this exact situation. We heard those words in reference to my mother. Having a fistula implanted, determining the best fluid intake, dietary restrictions and pending dialysis was our new normal. So, when my mother was diagnosed with end stage kidney disease and put on the transplant list, there was no question I would immediately begin the process to become a potential living donor. There was no hesitation that I would subject myself to the blood work and testing. I never realized that the process could take months… and in my case years to become “cleared” for donation. In August 2014, I made the three hour drive to the large academic medical center to undertake my two-day, intensive evaluation. The evaluation involved blood work, imaging, EKG, Echocardiogram, stress test, 24 hour blood pressure monitoring, glucose tolerance test, psychological exam and complete physical. With each encounter, the healthcare professionals reassured me that I looked like a viable donor but they would know more after they presented my case to the “committee.”
When I left the medical center, I felt confident that I would be cleared and we could get the transplant underway. I had just started a new job and thought it would be easier to take leave before I had gotten too engrained in the position. However, that wasn’t my reality. The follow up phone call I expected in the next week did not occur as I had hoped. I was subjected to additional blood work and asked to ‘lose weight.’ Being the over-achieving first born, the fact that I did not qualify immediately was devastating and frustrating. I immediately changed my diet and started exercising more. For the next year, I endured additional testing, appointments and an ongoing internal feeling of letting my mother and family down as I was a “near perfect” match based on my blood and tissue typing.
Along the way I learned the system was not always focused on me and how the experience was affecting me and my family. I discovered that I had to become my own advocate and push and prompt the transplant team to retest and not count me out. I also had the stress of feeling like a failure to my mother and family. In October 2015, I made the drive back to the medical center for another intensive two-days of testing. While it was much easier this time physically, it was emotionally taxing to know that I could have more “targets” to meet – even though I had lost 15 pounds and reduced my cholesterol significantly. The physicians all noted that I had made significant life changes but this time there was something in my blood work. I had an elevated APTT and they needed additional testing to ensure there were not genetic issues. Defeated, I made the long walk to the lab for additional blood work.
A week later, I was asked to drive back to the medical center for another appointment. This time it was with a hematologist. This doctor would be determining my fate – – could I or could I not be a living donor and also, did I have some terrible bleeding disorder. Luckily, this physician saw the desperation in my eyes. He first reassured me that I did not have a bleeding disorder and that I was cleared based on his evaluation. At this moment, my only response was tears. Granted, I had heard these words before but this time, this was all we needed and it only took another month.
After my mother was cleared for surgery in December 2015, we had to just wait for a surgery date. We scheduled the date for surgery for March 6, 2016. The surgery date had only taken 24 months to finally be scheduled. One month prior to surgery, I got a frantic call from my transplant coordinator who needed me to have a skin check or we could not do the surgery. After all of the appointments, the regulations had changed in January and this was another requirement to be considered a viable donor. Luckily, I work at a medical school and I begged coworkers for a favor and was able to meet this task.
Becoming a donor was an easy decision for me but the process was emotional, frustrating, terrifying and quite disruptive at times. My experience demonstrates the complicated process by sharing the unclear outcomes, personal role disruption, conflicting information and an overall sense of urgency. Although I achieved my ultimate goal of donating my kidney, the disruption and chaos involved in the process made it far from a successful experience. In August 2017, I started my PhD and decided to focus my research on the importance of live kidney donation and what can be done to improve the overall process – specifically focusing on the living donor. In the US, 116,571 people are in need of a lifesaving organ transplant with over 3,000 new patients are added to the kidney waiting list monthly (OPTN, 2017). According to Organ Procurement and Transplantation Network (OPTN), a public-private partnership that links all professionals involved in US donation and transplantation system, 17,107 kidney transplants have taken place in the United States with 5,537 of those kidneys coming from living donors (OPTN, 2017). Many patients on the kidney transplant list die or become too ill to eventually have a kidney transplant.
I want to address the disruption – by focusing on the donor and how the evaluation process can be improved. Grounding my work in Minimally Disruptive Medicine, an approach grounded in a conceptual model and three cumulative complexity model theories (Normalization Process Theory, the Burden of Treatment, and the Theory of Patient Capacity), I hope to use my lived experience to help others (May, 2009 & Shippee, 2015). It wasn’t until I read, The Lived Experience of “Being Evaluated” for Organ Donation: Focus Groups with Living Kidney Donors, by Hanson, et al that I realized my experience was not unique (Hanson, 2017). Other living donors had some of the same experiences and feelings as I did during the process.
While I would never change my mind to not donate my kidney, having more clarity about the evaluation process, calibrated expectations about potential delays, and insights from real experiences from other living donors could have made the process easier. Developing, testing, and implementing tools to support this process may begin to address donor needs. Incorporating kind and careful minimally disruptive medicine concepts into live kidney donation could improve the overall process for the donors and ultimately increase live kidney donation over time.
Hanson, CS, Ralph, AF, Manera, KE, Gill, JS, Kanellis, J, Wong, G, Craig, JC, Chapman, JR, Tong, A. (2017) The Lived Experience of “Being Evaluated” for Organ Donation: Focus groups with Living Kidney Donors. Clin J Am Soc Nephrol. doi/10.2215/CJN.03550417
May C, Montori VM, Mair, FS. (2009) We need minimally disruptive medicine. BMJ. Aug 11; 339: b2803
Organ Procurement & Transplantation Network (OPTN). (2017) http://optn.transplant.hrsa.gov/ Accessed on 01Nov2017.
Shippee, ND, Shah, ND, May, CR, Mair, FS, Montori, VM. (2015). Cumulative complexity: a functional, patient-centered model of patient complexity can improve research and practice. J Clin Epidemiol. 65 (10): 1041-51
I would like to acknowledge Marleen Kunneman, PhD, Anna Kerr, PhD, Melissa Thomas, PhD, MPH, and Lisa Forster, MS for reviewing and editing the document.