I am not alone in dealing with the uncertainty and emotional roller coaster of trying to find a living kidney donor.
More than 100,000 people every year in the United States are waiting for a donor. Tragically, only 6,800 people actually donate one of their kidneys and more than 13 people die every day.
Diagnosed with Stage Five Kidney Disease, my kidneys were failing to the point of either dialysis or death. To me, both options were untenable. I had no idea how to find a living kidney donor, though my life literally depended on it.
Thus began my whirlwind journey with all the complex emotions accompanying the process.
I want to share my struggles to help others facing the same challenges to have hope, despite overwhelming obstacles.
I was introduced to the National Kidney Donation Organization (NKDO) that provides mentors, all of whom are kidney donors. These mentors support people hoping to find a living kidney donor and assist those who have expressed interest in becoming one.
Despite their help, I was still left in the dark about how to find a living kidney donor. It was a gut wrenching and terrifying feeling.
The National Kidney Registry was helpful as well, but with so many people needing a kidney, especially children, I found the competition to find a living kidney donor overwhelming. Sadly, so many people need donors, yet so few are willing to donate one of their kidneys.
To make matters worse, since I am 75 years old, I was told I would be a hard sell. Many people looking for kidneys are younger, with spouses and growing families. A potential living kidney donor might be moved to help that young recipient, more than an older adult like me. In addition, since I lost my spouse of 40 years about four years ago, and because I have no children, I do not fit into the standard mold.
So, I needed to devise another, more aggressive plan. With NKDO’s help, we created a website — www.kidney2don.com. With the guidance of many professionals, I began a marketing campaign including billboards across three states, launched social media sites, ran radio advertising, had news reports on television and conducted Zoom calls with family and friends.
The learning process on how to use these marketing platforms was time consuming and frustrating.
Though we had many responses, a large percentage never followed up, did not make it through the testing process due to medical issues, and only a handful continue to be tested at this time. I am hoping that one will come through and save my life; the uncertainty is debilitating.
Despite this intense effort, I became even more frustrated because I still did not have a confirmed donor. What I subsequently learned was that not everyone has the willingness to donate an organ.
It took some time, but I turned that frustration into renewed intensity. I decided I needed to take charge of my own destiny. To my surprise, a little optimism crept into my fractured spirit; I turned despair into action. I decided to continue my marketing efforts to find as many donor offers as possible, up until my transplant surgery with a new working kidney.
My journey to find a living kidney donor is far from over. I realize I am not the only one dealing with this emotional roller coaster of a process. Like everyone hoping to find a living kidney donor, we are not allowed to know anything about potential donors because of HIPAA rules; it is a nerve-racking process.
My message to anyone facing life-threatening kidney disease is to stay positive and proactive in your search. When you are experiencing the inevitable emotional highs and lows that come with searching for a living donor, turn despair into action.
And for those nervous about becoming a living kidney donor, I encourage you to learn how the process works. You will realize you can live a normal life with one kidney. And most out-of-pocket costs, including reimbursement for lost wages and travel, are covered.
Finally, for Americans facing this devastating disease, know that somewhere out there is an altruistic person willing and able to give a part of themselves to save your life. You just have to be creative and committed to finding them.
Don Brown lives in Doylestown Township.
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