Justin
ADPKD. I was 25 years old when I found out. I live in Minneapolis, MN
In 2004 my mom was diagnosed with PKD after having an MRI for an unrelated medical examination. Luckily the doctor was discerning enough to notice cysts on her kidneys and liver. I hadn't heard of PKD until that time, and even when my mother informed me that I had a 50% chance of having inherited this disease, I still wasn't very concerned. After all, she was in relatively good health at 50 years old, and neither of her parents seemed to have shown symptoms of PKD. Both of them lived into their 80's.
In 2006 at the age of 25 I noticed that my blood pressure seemed to read high when I'd check it at the free automated blood pressure stations you see in malls and stores. I had always assumed that the free machines tended to overestimate the readings, so I went to a minute clinic at a Target store near my house to get a second opinion. My fears were confirmed when the nurse told me that my blood pressure was around 165/90.
I couldn't believe it was that high since I seemed to be in good shape, was young, and exercised regularly. That day was when my research into Polycystic Kidney Disease began. I remember going home that evening and pulling up websites about PKD and feeling very discouraged by what I read. Most of the online articles at that time were outdated and full of hard to understand medical terminology. Based on what I was reading I was certain that I wouldn't live another fifteen years without declining in health and needing a kidney transplant. I was devastated.
Fortunately, I found out about a free PKD screening held by the National Kidney Foundation near my home in Minneapolis that very weekend. At first I was apprehensive to screen for it since I didn't have health insurance and was afraid that once a diagnosis was in my medical records, I'd be facing an uphill battle for ever getting insured. But I decided that this was just too important to pass up. The screening informed me that I was positive for PKD. On my way out of the building I overheard a doctor named Marie Hogan from the Mayo Clinic speaking in a conference about something called The Halt PKD Study. Once I signed up to be in the study, I knew that the medical community would know about my PKD. But as far as I was concerned, the benefits outweighed the drawbacks. I received free blood pressure medication and semi-annual check ups by Dr. Torres at the Mayo Clinic for the four year duration of the study.
Some of my fears were alleviated upon speaking to Dr. Torres and a nurse about PKD. It seemed that there was now hope for effective medicines on the horizon. I remember the day I went to Mayo to get an MRI. It was policy that I had to be wheeled to the MRI room in a wheelchair. I was being pushed down this long hallway by a guy who was about my age, and on the way we passed by a group of young nurses who were touring the clinic. I couldn't even look up at them. Just a few days prior I had been playing basketball and now I was in a wheelchair? Even though I didn't need the wheelchair, this situation really bothered me deep down inside. I was brimming with determination to be healthy at that point. From that day on I worked hard to learn about anything else I could do, outside of taking medicine, to stay healthy.
During my intensive searching the next day I landed on a page from the PKDiet website, founded by Diane, I was elated to find that there was someone else who had taken the initiative to educate others about a diet she had found to be conducive to good kidney and liver health, as well as good overall health. It seems that she has greatly improved her own condition and her future well being through her intensive research and by eating foods that are helpful to PKDer's, as well as by avoiding foods she has found to be harmful to our cystic kidneys and livers. On this site I was able to read Diane's and other people's stories who have also struggled with PKD, many of whom have experienced a decline in kidney and liver function or have already received a transplant. Finding that website gave me a great feeling of relief, and to this day I check back on pkdiet.com regularly to rekindle my passion for good health and to read the inspiring and educational articles Diane and others write, as well as links they post.
My participation in The Halt PKD Study ended in 2011, and I have since joined another long term study for the drug Tolvaptan through Davita Clinical Research. My diet has changed dramatically in the last six years, and my blood pressure routinely reads normal without taking any blood pressure medications. I feel great, and since my 2006 diagnosis, have seen no decline in my kidney function. I'm very hopeful that I'll maintain my healthy kidneys and liver, and know that if my health declines I'll have hope, and the experience of a great supportive group to draw from.
I'm very grateful for everyone who contributes in any way to treating PKD. Thanks to Diane for encouraging me to share this story and for all the people who help by reaching out, donating, volunteering, exchanging information and researching to help us treat PKD so we can have hope, and live the healthiest life we can.
