I'm convinced at this point in my life that everyone does, indeed, have a story to tell. In telling our stories, we can educate others, make them a part of our lives and perhaps make the world better for it.
Today I introduce you to my cousin, Jason, who has willingly agreed to share his story; I'm certain it will leave an impact.
When I first met her, she was a gift from heaven, my Angel. I was in the middle of a messy divorce and so was she. The two of us held each other up and carried each other through that difficult time and landed on the other side of it scathed, but not burned. My situation never quite got better with my ex. Hers, on the other hand, resolved into a mutual respect for each other and doing what is right for the children. I have always admired that. For the nearly seven years that we have been together, my wife, Gina and I have faced several challenges just like any couple. We have helped each other through them, but there’s a part of me that has always known Gina has been my saving grace, my Angel.
There has not been a moment in our relationship that Gina has not supported everything I do. Her generosities toward my artistic pursuits, my well being, and that of my children have been nothing short of miraculous. Gina has given me hope, love and life. Why then when she told me about her struggle with Polycystic Kidney Disease (PKD) would I do any less?
PKD is a hereditary disease that affects 1 in 500 people worldwide. There is no cure, no treatment, and it never skips a generation. What it does is create fluid-filled cysts in the patient’s kidneys. Those cysts enlarge and limit the kidney’s function until they eventually become so big the kidney shuts down. Your kidney is about the size of your fist. A PKD kidney that is close to terminal is the size of an NFL regulation football. My wife is very petite. Her kidneys are now almost 10% of her overall body weight.
Gina has known about her kidney problem since she was in her early 20s. Her father died of the disease around that time. We started our relationship later in life and she had been living with this for many years. Being very open, we often talked about it and what it would eventually mean for her – a transplant. Dialysis is the only thing other than a transplant that could prolong her life. Over the years we met with many doctors and found through research that dialysis and transplant do basically the same thing – one is mechanical and one is organic. It picks up cleaning the blood when the kidney can no longer do it. We aimed for transplant.
It’s a scary proposition to look at the person you love and think, “They’re dying.” I tend to look at things a bit dramatically, but that was what went through my head daily toward the end of this adventure. You watch the person fade. A shadow of what was there remains, but the body changes and fights with the spirit to see who will hold out longer. Gina has a tough spirit. She fought tooth and nail to the last moment she could. Working fifty to sixty hours a week, still helping take care of our family, and doing all she could to retain a sense of normalcy. Watching this, what could I do but help lift my Angel’s wings back up?
We met with the transplant team in July of last summer. While there, they started Gina on her track to finding a donor. The first test was blood work. Well, while we were there, I figured, “I can give a little blood, you never know I may be a match.” I was. But I was also on three blood pressure medications, weighed 240 pounds (which at 5’7” is not good) and did not live the healthiest lifestyle. So, I met with donor services and they read me the riot act on what I had to do if I wanted this to work: lose enough weight to have a BMI of at least 35, which I did – I lost 20 pounds by October. Not good enough. My blood pressure was still too high with the meds. I was told in no uncertain terms that if I were not her husband, I would have been kicked out of the donor program by that point.
That would not do. God and the Divine Closed Universe had brought Gina and I together for several reasons, not the least of which was to save her life. What did I have to do? Lose a total of 60 pounds. The doctor wanted me to be 185 pounds – less than I weighed when I graduated high school. Now it was a race against the clock. Gina was getting worse and we wanted to beat her needing dialysis. Over the next few months, I worked out a strict regimen of diet and exercise. The trouble was I was not able to use diet supplements etc. I had to do this naturally. With the help of the transplant dietician, we came up with a plan.
I had to take a month off of all blood pressure meds and lose enough weight to bring down my blood pressure by Thanksgiving. I got myself to around 200 pounds and brought my blood pressure to normal. I needed to keep going, that 185-pound mark was still far off. By January, I was running four miles every morning and eating healthy enough that my weight was down under 190. We were cleared for transplant!
Gina still hadn’t started dialysis, but her kidneys were only working at 12% capacity. On February 11, 2013 I donated my left kidney to my Angel. It was the least I could do for her. She has done and continues to do so much for me. We’re both healing from the surgery and I am happy to report Gina’s new kidney has abated all of her symptoms of kidney failure. We’re looking forward to a lifetime of helping each other and others. We were extremely fortunate. Our match was miraculous. Most PKD patients are not so lucky. If you would like to help please visit www.pkdcure.org. The PKD Foundation is searching for a cure. With all of the genetic research that is going on, they are hoping to find a stop to PKD. My Angel, Gina and myself thank you for your help.
Thank you Jason for sharing your story. Go check out Jason's talents on his website here and on facebook.
Here's a favorite I found.
There is no greater agony than bearing an untold story inside you.