Fair Trade: Kidney Donor Swap Strengthens Family Ties

Ballantine_Johnson_Hrzntl

By Lisa Ballantine and Sebrenia Johnson

This is a shared story of a kidney donor and recipient told through the eyes of both participants who are related through the marriage of their children but were brought closer together because of a paired kidney exchange.  

Lisa

When I first met Sebrenia, I was impressed with this kind, godly yet fierce woman who was to be my son’s mother-in-law. I saw her ability for compassion and kindness toward others. We connected immediately, and she has since become a dear friend. In fact, we call each other sister-mom since there is no term for our relationship, and as we share our children now, and love each other as sisters, this seems fitting.

As I got to know Sebrenia, I learned that this amazing woman was being hindered by her lack of a functioning kidney.

Sebrenia

To manage my kidney disease for the past 13 years, every Tuesday, Thursday and Saturday for three hours and 15 minutes I needed dialysis treatment. I also had to incorporate a renal diet into my lifestyle, which included many food restrictions. As a dialysis patient I had to adhere to no potatoes, cheese, milk, chocolate, dark-green leafy vegetables, beans, cornbread, bananas, tomatoes, orange juice, colas, ice cream, peanuts or products with nuts.

These foods are high in potassium and phosphorus and could be detrimental to the heart and bones of a person with limited or no renal function.

Now imagine trying to balance a dialysis schedule after work, being a single parent and caring for three teenage daughters. It was a difficult time for all of us, but we got through it. I think what was really hard was seeing the concerned looks on my daughters’ faces as they watched me deal with the issues of dialysis, countless hospital stays and emergency room trips. However, I am thankful to have had my family, my daughters’ father and stepmom as a great support system.

In February 2006, I met a great guy (Tony), and we married two years later. He was added to the list as a support system for the girls and me.

In December 2010, I thought my dialysis days were coming to an end when my brother-in-law tested and was a possible match. We had completed all of the required tests, things were looking very promising, and we had a scheduled surgery date. Everyone was excited. However, the day before the scheduled transplant surgery, my then medical team (not Rush providers) erred in their testing and cross-matching process.

It was determined that my antibodies would reject my brother-in-law’s donated kidney if they proceeded with the surgery. We were all devastated. I was numb; it felt like a bad dream. However, when I got over this situation, I realized that it wasn’t meant to be. God makes no mistakes.

When the dialysis started to affect my ability to work, I went on disability in January 2011. Several months later, I researched and signed up with the Rush transplant program. In my first meeting with Dr. Stephen Jensik, a Rush transplant surgeon, I explained my experience with the other providers, and Dr. Jensik assured me that that would not be my experience at Rush.

Those eight years on Rush’s transplant waiting list were challenging times. I dealt with calls of possible donors but to no avail. In total, I received about nine calls, averaging one call a year. Additionally, extensive health challenges started developing, including parathyroid issues, a thyroidectomy, blood clots, blood transfusion, and catheter and graft issues to name a few.

Lisa

One day at lunch, we were talking about Sebrenia’s health issues, and she shared her story of kidney disease. As an athlete myself, the thought of this life was overwhelming. I enjoy such good health and generally take it for granted.

She explained that her only hope of ending this health crisis was to receive a kidney donation. I did not know that this was even possible, and I asked her for more details. She told me that not only can we donate organs as a dying wish, but it is possible to be a living donor for a kidney and other organs. She jokingly shared that God gave us two so that we could share one. This idea made me think, and I thought of nothing else for the next few weeks.

My son is finishing medical school, and I used his knowledge and connections to get information about kidney donation and what that would look like if I were to be a donor. I wanted to know if I donated a kidney, could I continue to be an athlete? Would my lifestyle change? Are there lasting effects from donation that would impair or put my life at risk?

For the donor, there is the surgery, but then life with one kidney is hardly affected at all. The remaining kidney would take over the filtering capacity for both since it turns out that two kidneys don’t work at capacity.

My son and I were surprised to find that not only would my life not be impaired, but I could continue my triathlons and even rock climbing. If I decided to donate a kidney, there would be little effect on my future life.

The biggest risk seemed to be the surgery itself, and when I looked up surgeons at Rush University Medical Center, they were highly rated and experts in their field. I was totally convinced that I needed to do this. The benefit that my sister-mom would receive from having a healthy kidney so far outweighed the risks for my life that it was obvious to me what I was going to do.

After the research, I told Sebrenia I wanted to donate a kidney to her. We were on the phone, and there was silence. I said, ‘Sebrenia, did you hear me?’ And she said, choked up, ‘Uh, I can’t even speak. I need to call you back when I collect myself.’ We spoke later, and she was very tearful. To me though, this just seemed like an obvious solution. I wanted my future grandchildren to have two grandmothers, and I had two perfectly healthy kidneys.

Sebrenia

After testing, Lisa wasn’t a direct match for me. However, her willingness to donate her kidney to me allowed me to participate in the donor swap program. A donor swap, or paired kidney exchange, occurs when a living donor and recipient aren’t a match, but another donor/recipient pair are. In turn, two transplants can occur.

On March 25, 2019, I met with Dr. Edward Hollinger, my transplant surgeon, and he explained that there’s a great swap match for me, and he felt very optimistic about the donated kidney. On April 3, 2019, Dr. Hollinger performed the transplant surgery. The kidney came from a recipient at Medstar Georgetown University Hospital in Washington, D.C.

Lisa

For my recipient, it took about eight months, but we got the call one day in April that they had an offer. We only had a week to prepare, but this was our chance, and nothing would stop us. My kidney was flown to Colorado to a man who had struggled with kidney disease for 38 years and was hoping to walk his daughter down the aisle in only a month’s time.

His family contacted me to share how excited they were to have their dad around for their future. He contacted me afterward, and we hope to meet one day.

It was definitely a God-timing miracle. To see my sister-mom getting healthy and back to real life is the best gift I could have asked for. Sebrenia is enjoying her new kidney and doing better every day. The best gift that we will receive from this process is watching our grandbabies together one day.

Sebrenia

Lisa’s selfless and courageous act of love will never be forgotten. I am home recovering now, but I hope to encourage others to look into this process. The gift of life for another human being is the greatest thing we can do. I know others who have donated anonymously, and I only hope our story can encourage this to continue on.

 

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s