My ankles are much better than they were, but still are occasionally swollen and sore. The summer heat is adding new challenges to my resolve to train regularly and to spend more time on the road than on the treadmill in my air-conditioned basement. So I’ve come up with an idea that hopefully will give me the added motivation to finish what I’ve started, and run my best possible race. I call it the voice memo project.

There’s a feature in my iPod that allows me to record short memos. I think it’s designed for “to do” lists, but it will adapt to what I have in mind. I’m asking family, friends, co-workers and acquaintances to record short motivational comments for me. I plan to make a race mix, and intersperse their words of wisdom with some upbeat tunes to keep me moving for the 5K in Madison. I’ll let them argue with the voice in my head that may want me to stop.

I invite you to do the same. Even if you’re not running or competing at all, this technology offers a great way to include others in your journey to Madison. It will help to remind you of all the people who love you and are so proud of you for being a part of the 2010 US Transplant Games.

UNOS has compiled statistics on living kidney donors since 1/1/1988. Since then, females have outnumbered males, comprising 58% of the total. White donors contributed made up 70% of the total, a figure roughly equal to the percentage of whites in the overall population. Those in mid-life, ages 35-49, comprised more than 45% of the total when broken down by age.

Contrast this statistical portrait of living kidney donors with those who are currently waiting for a kidney transplant. At this writing, 90,900 persons are listed, and most are men (58%). Persons over 50 years of age are the largest group seeking kidney transplants, making up more than 60% of the waiting list. The racial breakdown of the waiting list is 39% white, 34% black, 18% Hispanic and 7% Asian. Compare that with 2008 U.S. Census Bureau projections on race in the US: 75% white, 12.4% black, 15.4 % Hispanic and 4.4% Asian. Clearly, chronic kidney disease strikes non-whites at significantly greater rates.

While it’s worthwhile to study demographics and use them to define the magnitude of the challenges we face to end the wait, ultimately what each potential recipient needs is a one-on-one match based on things that we can’t see so easily—blood and tissue types. The things we can see, like race and gender and age, really don’t matter when it comes to saving lives through transplantation.

In December 2009, a 13-pair living donation chain in Washington, DC illustrate this point so well with a mix of white, black, Asian and Hispanic donors and recipients, men and women ranging in age from 30 to 69, so beautifully uniting their lives and erasing all superficial boundaries. They paint a colorful picture of hope for those who are still waiting.

It’s just another amazing and unexpected consequence of my journey as a living donor, and now as a living donor “athlete” training for the Transplant Games.

Our area has been pelted with rain lately, and even on the morning of the race, the weather was questionable. Upon leaving the house, I decided that I would not run in a thunderstorm, but a little bit of rain wouldn’t hurt me.

The skies cleared as we approached the race site at a nearby mall parking lot. The course was relatively level, but as the sun came out the rain water evaporated in the 75 degree temperatures. The blacktop was giving off steam, making it difficult to breathe with the intense humidity. After the first circuit of the mall, I asked for two cups at the water station—one to drink and one to douse myself.

Since I lost over a month of training time with my ankle injuries and subsequent therapy, I was more concerned about finishing than going fast. To my surprise, I finished before several younger competitors and even some men, and came in second in the 50-54 female age group.

With less than two months to go until the games, my small success in this race and the unexpected prize will give me an extra boost to keep on running.

I had an open donor nephrectomy and have a seven-inch scar that starts four inches to the right of my navel and extends around to my right side.  As scars go, it’s a pretty basic one and has faded to thin and straight line, a few shades lighter than the surrounding skin.  You have to look really hard to see it, and I rarely remember that it’s there. 

A veteran of many surgeries, my husband Robb has some really impressive scars including the one from his pancreas transplant that I helped to shape.  When he had his kidney/pancreas transplant, the surgeons elected to place the kidney on the left side of his lower abdomen and the pancreas on the right side.  Shortly after Robb’s discharge from the hospital, the right side started to leak.  Additional surgery was required to place a drain and ultimately, the wound had to be packed to heal from the inside out.  This required my help as the home “nurse.”

As the visiting nurse trained me to pack the cavernous wound with sterile gauze, and I asked her “What’s that pink thing there?” 

She replied, “It’s your husband’s new pancreas.”

I said, “I think that I have to lie down now,” and went into the other room. 

She called the doctor and said, “I think Mrs. Wilson is going to be a problem.”

I overcame my initial queasiness, and became proficient at the task.  It took months, but eventually the wound healed, leaving a very distinct mark.

As Larry Hagman so often says, “Scars are badges of honor.”  Scars remind us of where we’ve been, but most importantly, scars are evidence of healing.  At the Transplant Games, all of us—transplant recipients, living donors and donor families—have scars.  What better place to show them?

One man was struggling with the idea of whether to accept a kidney donation from his 20 year-old son. Many in the group offered thoughts and concerns about this, but the most thought-provoking comment involved the following story shared by another attendee, Steve.

He recalled a time when his wife was terminally ill with cancer. They heated their home with wood cleared from their own property. Steve was struggling to find the time to clear the trees and happened to mention this in passing to another man at his church. Hours later, a crew of men came to Steve’s place armed with chain saws and axes. They spent the afternoon clearing and cutting, splitting and stacking. By the end of the day, Steve and his wife had enough wood to last the winter.

The organizer of the crew took Steve aside and told him, “I know that you like to do things for yourself, but sometimes you need to be able to accept help from others when it is offered. God grants special graces to people when they give of themselves. By denying them the opportunity to help you, you deprive them of those graces.”

If you’re waiting for a transplant, no matter how independent and self-reliant you usually are, you cannot rely solely on your own resources. Learn to gracefully receive help when it is offered, and allow others to experience how blessed it is to give.

My performance-enhancing drug has been the injections of depo medrol that I had last week. At times like these, it’s really wonderful to work for orthopaedic surgeons who take very good care of me. The injections did the trick to greatly reduce the swelling and inflammation of my ankles. Since donating a kidney, I was told to avoid non-steroidal anti-inflammatory drugs (NSAIDs). This class of drug is the treatment of choice for many orthopaedic conditions including my current diagnosis, ankle tendinitis. While NSAIDs can be used by kidney patients with physician supervision when needed, I feel more comfortable avoiding them if I can.

Today I started physical therapy for modalities and strengthening exercises. I’ll go twice a week to work with Nick at OSPTA. Nick helped me last year when too much computer use left me unable to look over my left shoulder, so I’m confident he can assist me in building enough strength in my ankles to run the 5K that is now less than 90 days away.

I always feel challenged to do the exercises at therapy that involve accessories like towels, weights and therabands, long strips of latex in colors that indicate different levels of resistance. I got a red one. My thoughts tend to wander as I repeat the moves, and I forget to count. I have three pages of exercises to do for my second session of the day, so I’ll get on with them and rebuild my strength one rep at a time. If I’m still feeling good, I’ll be able to in a local charity event with my family this weekend.

Both sides of both of my ankles are swollen and so incredibly painful. I went from running faster than I have ever gone, to being barely able to walk or stand. Thanks to steroid injections, support hose, better quality sensible shoes, rest, and elevation, I am able to walk with minimal pain. I should be able to resume walking for exercise in a week and running the next week, if all goes well.

This unexpected detour gave me the time to finish reading Suzanne F. Ruff’s new book, The Reluctant Donor. Suzanne serves with me on the National Kidney Foundation’s new Living Donor Executive Council. Her book chronicles her family’s courageous battle with polycystic kidney disease (PKD) that claimed the lives of eight family members, including her mother. Suzanne volunteered to be a donor for her sister Joanne, despite her terror at the idea of surgery. In this honest and funny account, Suzanne shares the inside scoop what it really feels like to be a living donor from the time of the offer to after the surgery.

I was struck by the many common threads between Suzanne’s story and my own. We both had suffered the recent death of our mothers, and gained strength from our religious faith to pursue living donation. We both were inspired by the US Transplant Games. Suzanne’s recipient thanked her for the gift of life that enabled her to her daughter’s wedding. I was an honored guest at my recipient’s 50th wedding anniversary celebration.

Suzanne’s mother, Joan, had a unique perspective on life. My favorite parts of the book are those where Suzanne shares her mother’s wisdom. While hospitalized, her mother urged, “Never forget the wonder and joy of an ordinary day.” She went on, “I would do anything for an ordinary day,” and then shared the simple, routine tasks that comprised her life, but could be so easily taken for granted.

That message hits home for me now as I read with my icy, swollen ankles in the air, longing for an ordinary day when I might try running again.

As a young woman, Stephanie imagined a life that included a career as a dancer and marriage to her college sweetheart.  Diabetes and a fatal auto accident led her on a very different path through multiple transplants, marriage at age 40 to a fellow-transplant recipient and leadership roles as a tireless advocate for organ donation.  Stephanie was a devoted and passionate volunteer for numerous organizations including the National Kidney Foundation.  In more recent years, Stephanie found a way to combine her interests in physical activity and health in a career as a personal trainer.

 How can I describe Stephanie?  Resilient, warm, able to laugh through the tears and the tragedies.  Perpetually upbeat, she was always smiling, supportive and sincere, and her boldness and courage inspired all who knew her.  Stephanie lost her personal battle with kidney disease earlier this year, but her spirit refuses to die.

 This past weekend, Stephanie’s co-workers and clients from the Curves fitness centers honored her memory with a walk-a-thon to raise funds to promote organ donation at area high schools.  As a unique and appropriate tribute, they hand-knitted a long red scarf that they call a “Lifeline” for each participant.  Red was Stephanie’s favorite color, and is the color of blood, the source of life.  As donors, we can reach out to be a lifeline for someone else, becoming knitted into another to sustain and comfort them. 

Stephanie submitted the following Charles Schultz quote to a website that asked for inspiration for kidney patients:  “The people who make a difference in your life are not the ones with the most credentials, the most money, or the most awards. They are the ones that care.”  This certainly describes the friends who cared enough to keep Stephanie’s passion alive.

I could barely breathe and was tempted to quit when I noticed a woman a bit behind me so I held back for a short while to run with her. Having another runner to set a challenging, but more attainable pace helped me to go further and faster than I would have on my own initiative. I ran close to three miles and was pleased with this as a good start for my first time on the road, versus the treadmill.

One of the fit guys, Dave, is now my trainer. I met with him for the first time this afternoon to work on building strength and improving my form. I need to work on moving my arms forward (not side to side), keeping my head held high, my upper body forward and kicking my heels back. We worked on exercises that mimic the types of motions used in running and after each set I did a lap around the track.

Dave said that he is excited to be able to help someone who has a competitive goal, versus the more typical goals of looking good in a swimsuit or losing weight. The Transplant Games are now 108 days away, so it’s time for me to get much more serious about training to do my very best.