Put me in, coach!

Put me in, coach! I'm ready to play! Yes, last October I felt like a World Series-bound Texas Ranger player. I really related to the Rangers since, just like their team, I'll be going somewhere I've never been before. You see, I'm 49 years old and I have chronic kidney disease caused by polycystic kidney disease (PKD). Now I'm ready to play the kidney transplant game.

At age 24, I learned that I had PKD when my doctor was investigating my unexplained high blood pressure. (I now know that hypertension is a common sign of kidney problems.) That was in 1986. My doctor reassured me that I wasn't getting a death sentence, and could expect to live a long, fairly normal life. The “but” at the end of that conversation was that some day, my kidneys would probably fail. I was well aware of my family PKD history. My grandfather died at age 51, in the mid-1960 s when dialysis was not readily available. Dialysis was much more common in 1986, but my father died at age 48 from an infection while on peritoneal dialysis. Recognizing that PKD is an inherited condition, my husband and I had a serious talk about whether to have children. A person with autosomal dominant PKD (ADPKD), like me, has a 50% chance of each child inheriting the mutated gene and having ADPKD. With advancing medical technology, my husband and I felt a cure or treatment might be found for our children and so it was worth the risk.

But there's more to this story! In 1995 I discovered there was a PKD Foundation that offered information, a support group, and funded research to find a cure for PKD. Why hadn't I heard about this organization before? Turns out the PKD Foundation, started in 1982, was exactly what I needed. I met people who had PKD or were affected by PKD. I found people I could relate to and who, like me, had a family history of PKD. The support group invited research doctors, nephrologists (CKD, dialysis, and transplant), social workers, transplant recipients, dietitians, transplant surgeons, and even an exercise coach to speak at meetings and share their knowledge for free. I learned how to become my own advocate and what questions I should ask my doctor. The PKD Foundation holds a yearly conference in various cities around the United States. World-renowned doctors share the latest research and knowledge in the fight to end PKD. My husband and I attended a conference in Phoenix where we learned that an angiotensin-converting enzyme (ACE) inhibitor medication for blood pressure control could possibly prolong kidney function in PKD. When I returned, I asked my doctor, who had also heard about the drug's benefits, and he got me started.

Since finding the PKD Foundation in 1995, I've been a sponge absorbing knowledge about PKD, while the cysts in my kidneys have multiplied and grown. My life has been fairly normal, but I know I have a ticking time bomb inside. My kidneys, which should each be the size of my clinched fist, are now at least five times that size. Those cysts have taken up most of the healthy tissue in my kidneys. Early in 2010 I found out that I was below 20% in kidney function, and because I've been in the learning mode, I knew that I could apply to get on a transplant list.

I told my doctor that I was ready to start the transplant process. Even though I'm a Texas girl, when I found that my insurance covered the Mayo Clinic in Rochester, Minn., I decided to go to there. My nephrologists gave me the referral needed so, for 3 days in late August 2010, I was evaluated at Mayo for a kidney transplant. My husband Chris went with me and was very impressed. He said I had the best check-up anyone could ever get. The doctors want to make sure that you are a good candidate to receive a transplant before putting you though the surgery and starting immunosuppressive drugs for the rest of your life. About 3 weeks later, on September 15, 2010, I got the news. I'd been approved! I also hope to get on a second transplant list locally. I want to try to avoid dialysis, but I know the wait for a kidney with my blood type is three to five years. Research shows that a PKD patient's kidney function usually falls about 5% a year after reaching 40% function. Doing the math, if I'm below 20% now, in two years I could be at 10% and would then have to go on dialysis to stay alive.

Several years ago a family friend said he wanted to donate a kidney and asked what he needed to do. What a gift! That friend is now being evaluated. Anyone who wants a transplant has to be put on the transplant list even if they have a donor. You never know if your potential donor will work out. Will my potential donor work out? I don't know. We'll see. In the meantime I'm in the “eat healthy for my kidneys” mode, moderating my protein intake and limiting high sodium, high potassium, and high phosphorus foods. Does the future hold a transplant for me or a temporary time on dialysis before my transplant? I'll just have to pray, wait, and see (and keep my bat in hand waiting for that perfect pitch!).

Take a minute to check out the PKD Foundation at www.pkdcure.org. Suggest to your patients with PKD that they look in their geographic area for chapter meetings and annual fund-raising activities. Help them learn that PKD is one of the most common life-threatening genetic diseases in the world (1 in every 500 people)—more common than cystic fibrosis, sickle cell anemia, Down's syndrome, Huntington's disease, and hemophilia combined. My hope is that the renal healthcare community steps up to the plate to learn more about PKD so that my children (and everyone's) have the best future possible. Let's all “play ball.” I'm ready to knock out a home run!