My dad and I were both “lucky” enough to have the genetic disorder called Polycystic Kidney Disease. Dad died of this malady in 1997 after spending seven years on dialysis.
We had both prayed for a cure for PKD or even some kind of treatment, and several years after Dad’s death our prayers were answered. My doctor at Mayo Clinic asked me to participate in the phase one of a drug trial. Phase One is a small sample. The people are closely monitored while they take the drug. My son’s father said:
Oh, you’re in the first group to see if anyone dies.
I guess that’s what ex-husbands are for, “pep talks” like that. Whatever. I decided that I was going to give it a shot. One of the biggest factors for me is that my doctor told me that if I would participate in this aspect of the drug trial, I would never receive a placebo. I agreed to sign up for the clinical trial and I have been taking the medication ever since.
Whenever I hear people talk about how expensive drugs are, I remember all the expenses incurred by the drug company testing my drug. First of all, they sent me and a guest to Orlando, Florida. John went down with me and we were invited to stay in a very nice hotel and were given vouchers for our meals. That was the first weekend.
On Monday morning, we were separated from our loved ones and we were bused to the Orlando Clinical Research Center. This was a nice facility where twenty two of us would be living for a week. The bedrooms were small and we knew we would all be sharing rooms with other people. On the bus, I attempted to keep everyone’s spirits up. As my ex-husband would say, that’s what I do. Someone in the group said:
Oh, you’re the cheerleader!
I looked around, saw all the younger faces and said:
No, it looks as though I’m more like the den mother.
When we got to the facility, we were asked to change into scrubs which is what we wore for the entire week. We could not go outside without an escort and when we did go outside we had to remain in a courtyard. I began calling myself “Martha Stewart” since she had recently been sentenced to prison and at times I felt like I too was in prison.
Actually, even though we were confined to the research facility, there were some positive things about the experience. For one, I had never met anyone with Polycystic Kidney Disease except for my dad and his brother Uncle Wayne. Imagine how delighted I was to get acquainted with people who had the very same condition I did.
Next, despite the restrictions and other conditions, we were still able to have fun. I taught several people to play bridge and even organized a Saturday night talent show. I guess my ex-husband was right…for once. At the talent show, three sisters (who called themselves the “Cysters”) sang about meeting new friends with the same disease.
Yes, the experience of starting a drug study is Far From Normal. There are late night blood draws and catching urine in something called a “hat.” Nevertheless, as the researchers present their findings to the FDA this week, I am saying a prayer that Tolvaptan will be approved. What a miracle the first drug to show improvement in Polycystic Kidney Disease is!