Dave

I received my kidney in the summer of 2015 at George Washington University Hospital after being on dialysis for six years. My donor was a 21-year-old male who died as a result of a violent act.

I was diagnosed with kidney failure during an emergency room visit in the fall of 2009. My 2728 listed “Unknown” as the cause of my end stage renal disease, but I know that the cause was a combination of poor health habits, low health literacy, and a sincere belief in my invincibility.

When I left the hospital and started in-center dialysis, I was very angry with my situation and with everyone but myself. I didn’t like being told what to do, so I made excuse after excuse to miss dialysis sessions. At one point, the charge nurse told me that if I missed three sessions in a row I would have to check in to the hospital before returning, and my first thought was that I could still miss two sessions in a row and be good to go. I didn’t think anyone could know more about my situation than I did. Looking back, I think I hadn't come to terms with the fact that I needed a machine to stay alive yet.

My first care plan meeting was more like an intervention. I was told in no uncertain terms that I wouldn't be around very long if I didn't change my ways. I went home, thought about it and realized that I was letting my pride keep me from making smart decisions. It was important for me to learn to be open to change, graciously receive help and ask for help when I needed it. Once I started putting my health first and began advocating for my own health, I realized that I could help others who were dealing with the same issues. I am now a full time health care advocate, and I honor my donor and his family by championing kidney disease awareness and prevention every day.

Most of my support came from my wife Hilva. She showed me how I should never take no for an answer when it comes to my health or my entitlements.

Joining End Stage Renal Disease Network 5's Patient Advisory Committee opened up a world of support resources. I learned about the ESRD Networks and what they do and I started to understand the importance of speaking up for other people with kidney disease. And that’s how I got my start as an advocate.

Before I got the call I was in great physical condition thanks to my exercise regimen, but I still suffered from the ups and downs that came with the dialysis “hangover” three times a week. The first change I noticed was that those ups and downs were a thing of the past. I got back to my exercise routine as soon as I could, and it was amazing how much strength and stamina I had lost in a month or so. Fortunately, this wasn’t the first time I had to start over. I had to resume exercising after surgery three times when I was a dialysis patient, and each time was a little easier.

In early December of 2015 something in my body said “OK - let’s go!” and my strength and endurance just shot up like a rocket. I used that energy to honor my donor and his family by paying my blessings forward every day.

Something people need to know is, a transplant is the best remedy, but it is not a cure for kidney disease. You still have to monitor your health a lot more closely and take more medications than most people.

I didn't want any part of a transplant for years because all I heard were horror stories about the cost of the medication, the terrible side effects, and that most transplants eventually fail. Fortunately, I had a great social worker who kept encouraging me to keep my mind open. In 2011 I got tired of the in-center routine and started the evaluation process. It took three clinics and almost four years, but I finally got the call. I named the kidney that came from a deceased donor Hercules because I knew he had many labors to perform.

Hercules didn’t wake up for almost two weeks. I cried in the hospital more than once because I was so overloaded with fluid to jump-start my kidney that my blood pressure readings were near 200! During that waiting period I had lots of time to think about everything I had gone through to get to this point and decided that if Hercules never woke up and I had to go back to dialysis, I did the best I could and if given the opportunity I wouldn’t hesitate to go through it all again.

But then Hercules slowly started to wake up. At first it was kind of hard to tell because my Foley catheter had burst and urine was coming out around the catheter tube instead of through it. But that urine smell was the best smell I’d smelled in a long time. It took a few more days for Hercules to really get going, but it was an amazing feeling to start peeing again for the first time in six years.

Anyone considering a transplant should join a transplant support group or discussion group and start asking questions. The transplant clinic staff are great, but there are some things that only transplant recipients know and can relate to. One thing I can recommend off the top of my head is that you should have at least $1000 on hand for unforeseen expenses. You can count on the fact that something unexpected will come up, and whatever it is will probably be expensive.

I've become good friends with my kidney "twin" Latitia (Pictured above - we received kidneys from the same deceased donor). We presented together at a National Kidney Foundation patient education conference last November, and we are both local, regional and national subject matter experts.

You can follow Dave's amazing kidney awareness advocacy efforts on Facebook. He will soon have an kidney health advocacy Facebook page up May 10th!

Location: Hillscrest Heights, MD