Patients must follow-up and be their own advocates

SURVIVAL TIP: If you feel uncomfortable asking questions and challenging a statement or diagnosis, bring someone with you who can. Your best advocate might be a friend instead of a family member who is emotionally involved. Note that advocates need not have a medical background. They simply need to be able to explain what the doctor says in layman’s terms and ask logical questions.

Although I drove myself to the hospital anticipating only an out-patient visit, I was admitted because my blood pressure surged. I picked up my phone to send a text, and I could not focus. Words and icons looked blurry. There I was─alone in the hospital─because I choose to be independent, and I couldn’t read! My blood pressure was high, and I was recovering from another surgery followed immediately by dialysis. My fear became overwhelming, but sleep defeated my anxiety. After a good night’s rest and pain medication lowered my blood pressure, I focused better. I got stronger reading glasses after I was released, and that helped. So trust me when I tell you unchecked high blood pressure can affect your vision! One experience with limited vision, and you will monitor your blood pressure regularly!

Before noon, a different nephrologist from the two I saw the day before came in to discharge me. I could go home!

When I expressed my concerns about the multitude of missteps the day before, he responded by casually telling me that I am responsible for my health. Doctors see patients only for a few minutes and work from lab reports. Therefore, patients

Doctor patient advocate

Bring someone with you who can ask for clarification.

have to advocate for themselves. So what I learned ─and want to emphasize to you─ is that we can’t trust doctors to thoroughly follow patients and make decisions. I learned that maybe I do need someone to go in and hear what the doctors and nurses say. Patients will find difficulty staying fully aware of surroundings, medications, orders and the aptitude of the professionals! I certainly did.


Did YOU KNOW? Most dialysis units offer early morning and late morning shifts. Only a few in each city provide a third shift. Some of those third shifts begin as early as 2 p.m. while others begin later for patients who work. Even fewer clinics offer a nocturnal, or overnight, shift.

Then the specialist grinned with good news. “We can get you right into training for home hemodialysis. Bing, bang, boom! I figured I’d be home, knocking out dialysis overnight in a few days. But he left out a number of details, such as the month-long training required every Monday through Friday about 45 minutes from my house for 4-5 hours, the room full of supplies to be maintained at home, and the plumbing requirements. In addition, someone must be with you during treatment.

Amy McCaskill, the same nurse who had trained me in PD dialysis had moved away since she trained me in PD Dialysis. Thankfully, she moved back and was the nurse who welcomed me to home hemodialysis training. She was a jewel, and she made me feel so at ease. And Amy is the poor messenger who had to share all of the details the doctor had left out. Home hemodialysis isn’t for everyone. While I knew immediately that home hemo wasn’t for me, the nurses and staff were gracious to let me go to their facility for a few days until I could get a permanent seat in an evening program at another unit. They showed sincere concern about my comfort and understanding the steps of my dialysis.

This can be a new and scary reality for many of you. Remember you are your best advocate and that step-by-step, you can get through this.

If you or someone you care about is facing dialysis, share your experiences and concerns. This is a forum for learning and inspiration where we can ask and be honest with others in the same situation. What were your experiences and challenges with dialysis?


About dialysisgal

When I joined the 450,000 Americans on dialysis, I wondered what "normal" would be. Would people stare at my access and ask what was wrong? In this blog, I hope to save other patients and their families from the difficulties I have faced. I want to share my experiences, what I learned, had to ask and was shocked to find. I am not a medical professional, but I hope we can have a conversation to help you better understand what you or someone you love with chronic kidney disease (CKD) might expect while living with dialysis.
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