Knowledge is Power

Abstract

Knowledge is so important. Nothing has taught me that more than my experience shifting from hemodialysis to peritoneal dialysis to nocturnal hemodialysis. I've lived with renal disease since 2003. The surgeon I worked with at the time inserted a graft in my lower right arm, and I made it to August before being told I needed to start hemodialysis. No other options were presented to me at the time. I received hemodialysis at a local clinic for about a year, and during that time I was uncomfortable and completely overcome. I didn't try to interact with other patients or staff. I was in the grip of a major depression, although I didn't realize it at the time. After almost a year, I started asking questions about how the machine worked. One day, I asked the nurses if every patient had hemodialysis, and they mentioned another option: peritoneal dialysis. I had never heard of it before-what a wonderful idea, doing dialysis at home! My oldest son is a computer whiz, and he helped me look up information about peritoneal dialysis on the Internet. The next time I went into the clinic, I told the manager that I really wanted to try it. The clinic didn't offer peritoneal dialysis, so the manager and the doctor tried to discourage me. I then called the area office of another renal clinic group to ask for a list of facilities that offered peritoneal dialysis. When I found that I couldn't transfer myself, I researched a nephrologist who specialized in it, and she took me on as a patient. She started me on hemodialysis at her clinic. A month later, I had catheter surgery, and I went through the training for peritoneal dialysis. I started on the bag method changing four times a day, and I immediately felt better. The only thing I didn't like was having to stop my day for the exchange. This disease can be scary, and information is a powerful thing. All treatments won't work for all patients but, for patients, it's an issue of trust. When basic information isn't shared, you begin to wonder what else hasn't been shared. This year, I traveled to California for the Renal Support Network conference, and heard patients talking about nocturnal dialysis. After the conference, I researched nocturnal dialysis on the Internet. I asked renal patients online to tell me about their experiences, and got lots of favorable response. I've received nocturnal dialysis for three weeks now. Sleeping in a clinic is better than I had envisioned. At 10 p.m., the staff turns off the lights, and everyone tucks in and goes to sleep. Last night, I didn't even hear the machine-the nurse had to wake me up. The transition was smooth, and the staff was supportive and encouraging. Once I switched to nocturnal dialysis, it left my days open, and I had more energy. I'm able to have my four grandchildren over, and I'm not cold or tired. I feel like I've been delivered. Although I'm a patient advocate, my message is for the doctors and nurses who care for renal patients. This disease can be scary, and information is a powerful thing. I believe that when a patient first comes into contact with the kidney world, all possible options should be introduced. I understand that all treatments treatments won't work for all patients, and that not every nephrologist specializes in every treatment, but for patients, it's an issue of trust. When basic information isn't shared, you begin to wonder what else hasn't been shared. You can introduce a world of information to patients through the many Web sites on renal care. As a medical professional, you're best equipped to compile accurate information for your patients. As a patient representative, I went to meetings and created information packets for other patients. I suggest working closely with your patient representatives to put out important information. Finally, patients know that to find a good doctor, you should talk to another patient-after all, that's how I found out about nocturnal dialysis. Encourage your patients to talk to each other. I know that the more I help someone else, the better life gets for me.