Today’s guest post comes from the Saltz family. As April is Donate Life Month, they requested we share their story to further educate, inspire, and empower everyone to consider the impact they can make through organ, eye, and tissue donation.
I’ve been a FBI agent for 21 years and I joined public service for the same reason as many others: the desire to make a difference. While I’ve worked hard to do my part over those 21 years, I’d like to share a different kind of story; one that I hope will inspire others to make a difference.
Sunday, just two weeks ago, started off like so many before; my wife and I got up early, we grabbed some coffee and headed off to church. Little did we know the next 24 hours would take us on an emotional roller coaster. Immediately following the service, my wife received a voicemail from an unknown number and as she listened to the voicemail, a perplexing look set upon her face. The message was from the on-call pediatric nephrologist at Johns Hopkins Hospital saying they had a kidney match for our son.
Our 17 year old son, Josh, has a genetic kidney disease called Alport’s Syndrome. Due to his deteriorating kidney function he’s been on the kidney transplant list for about a year. While we’ve been monitoring Josh’s kidney condition for quite some time, we never expected or even anticipated we’d receive such a call. When it comes to organ donation, there are two types of donors: deceased and living. Although with modern technology the gap is closing, studies have shown that kidneys from living donors can last 5–10 years longer than those donated by deceased donors.
Over the past year we’ve been blessed to have a large number of friends, family, and even people we’ve never met get tested to see if they might be a match for Josh. Although there have been several “good” matches, Josh has a rare antigen which has caused the physicians to extend the search for a donor who also possesses this antigen. While Josh can accept a kidney without this particular antigen, doing so could cause complications when he needs his next transplant. A second transplant? That is exactly what I said many years ago when I first learned that many donated organs don’t last forever. Organ transplant recipients may need two or three transplants throughout their lifetime.
So at this point I guess it’s important to mention we also have a 20 year old son who has Alport’s. He successfully received a kidney transplant almost 3 years ago and I was fortunate to have been his donor. Today, Matthew is healthy, attending college, and doing incredibly well. I cannot express how much this experience positively affected both of our lives. Given how well things went for Matthew, our hope has always been that Josh would also receive his kidney from a living donor.
Photo: Saltz Family
So let me share with you a little bit about Josh.
If you saw him in person you’d probably never know he has a kidney disease. He’s a smart handsome young man and even with his disease he’s competed in sports throughout his high school career. However, you may notice Josh is a little smaller and less developed than other kids his age. Unfortunately the kidney disease has also stunted his growth and puberty. This, probably more than anything else, has impacted Josh’s early struggles with this disease.
Up until he was about 13–14 years old, Josh was at the top of his age group athletically. Josh played on the most competitive travel teams in our area and both his baseball and soccer coaches projected him to play collegiately at the highest level. With his growth and puberty stunted, this disease has not only impacted his athleticism, it has also affected his dreams, his confidence, and painfully, much of his happiness. This disease has also taken a toll on Josh socially.
In spite of it all, Josh perseveres. Challenged with significant anemia and being physically overmatched, Josh has been and continues to be a contributor on his varsity soccer and baseball teams. Only those closest to Josh really know his daily struggles and witness day to day the amazing amount of fight inside this young man.
Back to that Sunday two weeks ago. We had about two hours to decide if we would accept the amazing gift of a donated kidney, or would we continue to wait for a living donor? The doctors informed us this was a “good” kidney and it was comparable to those of the living donors that had been tested. As a family, we toiled over the decision. Josh had just started the spring baseball season where he was slated to be the starting shortstop. He’s a senior and all the special senior events would be kicking off in a matter of weeks. Due to dangers of infection, a transplant recipient has to avoid large crowds for two to three months, meaning Josh would have to miss baseball and the remainder of his senior year. As any 17 year old might be, Josh was not supportive of the transplant; he wanted to wait until he graduated.
As we continued to wrangle with the decision, we received an unexpected reprieve. The transplant surgeon asked that we first get updated blood work on Josh in the morning. We received the lab results and Josh’s creatinine had increased significantly. With the potential of dialysis looming in our future we made the decision to go ahead with the transplant later that day. In a matter of hours our lives were turned upside down. We gathered our belongings and started making arrangements to be at the hospital for the next two weeks.
Over the course of the day Josh eventually came to terms with having the transplant. He realized having the transplant meant he may be able to “walk” during graduation and would likely start college on-time in the fall. So the surgery was scheduled for 8:30 pm and at about that time the surgeon walked in. It was go time. The surgeon took a seat and proceeded to tell us he had some bad news: the kidney was too big and he was not comfortable moving forward with the surgery. Needless to say we were crushed. Josh, who was crying earlier in the day because he didn’t want the transplant, was now crying because he wouldn’t be able to have one. While we weren’t able to take advantage of this wonderful gift, we know someone else was, and we are so very thankful and grateful to have had this opportunity.
Although we continue to face the uncertainty of what lies ahead, we’re cherishing every moment we get to see Josh play his final baseball season. We have also found great comfort in knowing some other very needy person received the gift of a new life that day. Following Josh’s example, we persevere, and we remain hopeful a kidney match and a successful kidney transplant are in our future.
I share this story for only one reason: with the hope it will influence you and others to consider organ donation. In many states you have the option to select organ donation when you renew your license. You can find additional information and can also register to become an organ donor via Donate Life at www.donatelifemaryland.org. If you are interested in becoming a living donor, I’d recommend contacting the transplant center at your nearest major hospital.
Currently 120,000 people in the U.S. are on organ transplant lists and every day 22 people die waiting for an organ. Although 95% of Americans support organ donation only 50% are registered.
April is National Donate Life month; will you consider giving the gift of life?