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PATIENT PROFILE: A Preemptive Kidney Transplant

By Suzanne Ruff, Living Donor, AAKP Board of Directors, Author

What is a preemptive kidney transplant? Let’s examine the word: preempt and its adjective: preemptive. The Oxford dictionary defines preempt as a noun, with the definition:

1. a. forestall b. acquire or appropriate in advance.

2. to prevent (an attack) by disabling the enemy. The adjective, preemptive, defines it perfectly: taking action against the enemy. In the case of a preemptive kidney transplant, the enemy is kidney disease.

A perfect example of someone who embraced the concept of a preemptive kidney transplant is 63-year-old Karyn Waxman of the Memphis, TN area. She was diagnosed nearly twenty years ago with polycystic kidney disease (PKD), a disease without a cure. PKD is a hereditary disease, but in Waxman’s case, there was no family history of the disease.

Waxman explains, “When I was initially diagnosed with PKD, I felt frightened, alone and confused.” Doctors determined her disease was caused by a mutated gene. “Dealing with the unknown was like entering an unwelcome dark part of my life that I wasn’t wanting to explore. But there it was… no choice… just me and PKD. Arming myself with knowledge and finding others with experience with this disease helped shed light on the unknown and strengthened my resolve to keep plugging along to live my best “healthy life”. Waxman, once she recovered from the initial shock of her diagnosis, jumped in fully to ‘attack the enemy’.

Her kidney disease progressed, “Very slow for me and very gradual, thank goodness. I felt okay.” Over five years ago, Waxman asked the owner of a gym about hiring a personal trainer for herself, telling him about her polycystic kidney disease. Waxman says she was at about Stage 4 CKD with 30% kidney function then.

The owner of the gym decided another trainer, Sara Kelly, would be a good fit for Waxman and told Kelly that Waxman had polycystic kidney disease.

Waxman laughs now. “I thought he was going to train me himself, but he turned me over to Sara Kelly! The owner passed me over to a perfect trainer. Here I was recruiting this guy….”

Kelly said, “I Googled PKD and tried to find out a little bit about it. I learned a little, but not much before the training began. Karyn, though, was mainly the source of the information about what Karyn could or couldn’t do and what she would feel comfortable with as far as exercising. My main concern with her workout was safety and avoiding things like sit-ups or crunches that may bother her kidneys.”

“Karyn seemed like a healthy person, but maybe about once a year we were dealing with something that put her over the edge…”

 Waxman added, “Yeah, you know when you get a cyst rupture – it’s just not working for you”. (Some patients suffering from PKD, a disease that forms cysts on the kidney, can sometimes suffer from painful cyst ruptures).

 Kelly says about Waxman, “The thing that impressed me was how involved she was, what a champion for the PKD Foundation she is, trying to raise money and trying to raise awareness, they have their license plates on their car and they have their golf tournament every year, doing PKD fundraising, just helping people.”

Understanding the disease can cause total kidney failure, Waxman said, “The thought of living my life tethered to a machine was beyond disturbing.” She talked with her nephrologist often and in her own words told him “dialysis was NOT in my plan if I could help it.” Waxman repeatedly asked that he let her know when a good time to search for a living donor would be. Waxman continued, “At one visit he actually smiled and told me that I should not worry and when the time was right, I would have no trouble finding a donor. My smug reply was that they don’t grow on trees and I need him to give me ample time to put the wheels in motion.”

In 2018, her nephrologist told her it was time to be referred to the transplant center for evaluation. Her eGFR was 21%. No one in her immediate family shared her blood type. Waxman said, “I studied the campaigns of others through Facebook and some other media outlets. I decided that asking for a kidney was not what I wanted to do, but moreover ask for the sharing of my need. I began with the creation of golf balls for our PKD Tournament that said #KidneyforKaryn, Donate Life, Share your spare. As soon as my transplant coordinator gave me the green light, I created 250 business cards to help accomplish this. I posted to Facebook. People have been so kind and supportive. It’s truly the beautiful part of this difficult journey.”

Sara Kelly, her trainer, age 52, said her first thought when she saw Waxman’s business cards was “Oh my gosh, she’s going to need to get this from a stranger. I knew that I had O+ the universal blood type so I knew the blood type would not be an issue. How could I watch her go through the process of looking for a donor; what would be my reason for not offering to donate?”

Kelly told Waxman that she was going to call the transplant center to be evaluated adding, “I bet I’m the first person they’ll call.”

The transplant center did call Kelly back. Kelly told Waxman who said, “You shouldn’t tell me about these things.” Waxman didn’t want to get her hopes up.

 Kelly laughed and said, “I have to talk to someone about it!”

Waxman said, “It was remarkable.”

Kelly stated, “She never put pressure on me at all.”

Waxman laughed and said she cautioned Kelly about being a donor because it is major surgery, “I was telling her the ugly. I wanted her to know it was a big deal.”

As a fit and healthy personal trainer, Sara Kelly had concern about not being able to exercise.

“I’m one of those people who exercises every day as part of my mental well-being. So this was going to be one of my challenges.”

As she recovers and gets back to her routine as a personal trainer, Sara said she will not be as pampering to her clients at first by not picking up their weights but instead telling them, “See that 5 lb. weight, you go get it.”

Kelly also expressed her belief that Waxman would take good care of the gift of her kidney and respect the sacrifice of it, saying, “I just know Karyn is going to treat it like something special. She has so much knowledge about the disease and being so proactive and going ahead and getting it before dialysis.”

Waxman said, “I am in awe of someone who is alive and healthy and willing to take time out of their lives and give a piece of themselves to a person so you can have your best life. I don’t see how anyone would be able to live with themselves and not treasure, value and take care of that precious gift.”

When Kelly was approved to be Waxman’s donor, they celebrated the date set for surgery: May 21, 2019. The transplant was a success and both are doing well.

Sara Kelly, newly living kidney donor, stated, “I hope somebody else donates, just from hearing our story. I hope one person, no matter how far removed, can say, ‘I think I can do that.’”

In July 2020 Both women hope to compete at the Transplant Games of America at The Meadowlands, New Jersey. I’d bet on them!

This article was originally published in aakpRENALIFE, July 2019.