“You need dialysis.”
Those were the scariest three words I ever heard. I felt like my dreams were shattered when my doctor told me that 20 years ago.
I was 35 and my family was just starting out. Our boys were toddlers and so active – I loved keeping up with them. I had a good hospital job and my wife and I had just bought a new home. We felt like our family’s life was really coming together.
But when I heard those three words, I felt like it was all slipping away. How could we have a bright future if I was going to be in dialysis three times a week for the rest of my life?
When I first started dialysis, I was hopeful. The clinics were well staffed and the conditions were clean and safe.
But because the clinics have cut down on staff and still serve so many patients, the caregivers can’t keep up. So the conditions have become unsanitary – blood on the machines and chairs, trashcans overflowing. Even worse, patients suffer and die.
One day during dialysis, I was sitting about 15 feet away from a patient who went into cardiac arrest. The staff was so busy with other patients that they weren’t able to respond until it was too late. He died right in front of me.
At that moment I realized that that could be me one day.
I decided that I’d have to take control of my health if I wanted to stay alive. I talked to other patients, did research, and even worked at a dialysis clinic for a while.
Now I pay attention to all the little things that will keep me healthy in dialysis. I watch my weight and pay close attention to the type of equipment they use because I know what filters and devices work best for me.
Because I got so informed about dialysis I’m still alive all these years later. I’ve lived to buy a home and see my boys grow up. My wife and I are still in love and staying active in our community.
But not everyone has been so lucky. I worry about all the patients who can’t be on top of their own care like I’ve been. No one should have to become an expert in dialysis just to stay alive.