Every month we shine the spotlight on an inspirational “zebra,” organization, or event that helps bring visibility to invisible illnesses. This month’s Zebra Spotlight shines bright on…Bill Hoffmeyer
My name is Bill Hoffmeyer. I am originally from Lansing, MI and now live in Cookeville, TN. I was diagnosed with Polycystic Kidney Disease in 1995 just after I turned 30 years old.
My cysts were found while they were trying to figure out the abnormal amount of pain that was involved in my first kidney stone. They saw something on the film that didn’t look right and had me come in a few days later to get an ultrasound. I got a phone call later that week telling me “we have determined that you have polycystic kidney disease. It’s really nothing to worry about, we will talk to you about it during your next visit.” Sigh. A day later, I got a call from my doctor, referring me to a specialist.
The first specialist or my family doctor didn’t really know how to handle PKD. There was a lot of guesswork.
My second specialist didn’t know much either. A lot of trial and error and questions unanswered. Like, diet, life expectancy, and did I pass this on to my kids?
The third specialist, that I found when I moved to TN, actually has had her hands wrapped around the whole deal, and I’m now getting great treatment. But the full team involves the family doctor, kidney specialist, and a urologist. They all have to know what is going on or it is a complete mess. I’ve had 25 kidney stones, two severe kidney infections, in which one of them tried to kill me.
One of the strange parts about my diagnosis is that if the doctors had looked further, 10 years earlier, I would have been diagnosed much sooner. I thought that I had broken a rib playing football back when I was 20. I had X-rays, and they found nothing. I was curled up on a couch for almost a week, and the pain didn’t completely leave for about three weeks. Turns out, that’s exactly how my popped cysts have treated me as well. Good times. In hindsight, it was probably best that I didn’t find out earlier, because I never would have had a kid if I knew there was a chance of passing this on.
FIVE “invisible” symptoms of your illness:
- Abdominal and back pain.
- Frequent urinary tract infections.
- Kidney stones.
- High blood pressure.
FOUR things you do to manage your illness:
- Drink large amounts of water and lemonade.
- Follow a proper diet: Low sodium. Low protein. No caffeine. No sodas. No ice tea. (Caffeine, sodium, and protein will all make the cysts increase in size. Soda and coffee make the kidneys work harder. Ice tea is a large contributor to kidney stones!)
- Blood pressure medication and exercise to keep the blood pressure down.
- One beer a week to keep the kidney stones away!
THREE ways your life has changed as a result of your illness:
- Constant fatigue!!! With cysts on both kidneys, the kidneys have to work harder to do their job. This causes fatigue. But you can’t have coffee or sodas or ice tea or energy drinks……..sigh.
- Scaling back the active lifestyle: I’ve had to become a spectator at theme parks, and at the county fair, softball games, etc. Most of the roller coasters these days are fairly smooth, but if you’ve never been on one before , then you can’t take a chance. One popped cyst and you are down for about three days, and then that leads to worrying about kidney infections and things of that sort. I’ve popped cysts just from swinging a baseball bat.
- Slowing down sucks.
TWO people who inspire you or give you hope:
- Katie and Allie. They are one person, right? We all face adversity every day. Everyone. And as the stewardess reminds us before each flight, when problems arise, and the oxygen masks drop from the ceiling, you have to put your own mask on, so that you will be able to help others. That’s Katie and Allie. They have their oxygen masks on, and they are running around the plane taking care of everybody on the entire plane. They know they have to take care of themselves first, but they have taken it on as their mission to make sure the entire plane makes it to their destination safely. Badasses.
- My father and my buddy Daniel Peters. Sometimes they seem like the same person. My father was one of the hardest workers I have ever known. He dedicated his life to taking care of others. My father fought cancer with an incredible sense of being. He would travel to Ann Arbor for chemo, come home for lunch, and then go back to work in the afternoon because he knew his clients needed him. The only thing he loved more than life was his family. He fought to make it to his 50th wedding anniversary. My mother was the most important thing in the world to him. He didn’t have to run around telling people that, he showed it every day. He taught us all how to work, how to live, and how to love.
Dan lives his life the same way. I get inspiration from him every day. Thank you, my friend.
ONE thing you want people to know about life with invisible illness:
- There is no place for pity. I don’t want anyone feeling sorry for me. I’m still working. Still living. Still loving. I might need a hand with something once in a while. I might need you to understand that I can’t always keep up. I might need you to understand that I can’t always do what I want to do. But I’m not going to quit trying. I’m still going to take care of people the best I know how.
I would like to add one final thought. Your organs are no good to you when you are gone. Become an organ donor. Please. You never know who’s life you may save. It could be mine.
We would love to feature you on our next Zebra Spotlight! Please send your story and contact information to email@example.com for consideration!