PD and Protecting Myself in the Hospital

On Jan 31st I had a stroke. I have endocarditis. A virus has attached itself to two of my heart valves, so I have to have them replaced. While I’ve been in the hospital, of course, I’ve been continuing with my PD at night. I’m with Fresenius and the hospital uses Baxter. What a disaster!

The Tech that was hooking me up didn’t follow protocol and broke the sanitary field (she washed her hands, gloved, touched the screen of her phone, then reached for my catheter!) But, the biggest obstacle was getting the doctors to accept that their cyclers weren’t functioning properly.

Know Your Own Normal

When using the hospital cycler and 2.5 solution my UF was 54. I was used to having a 1010-1400 UF with the same strength solution from my cycler. I began to fill with fluid and couldn’t walk five feet without sitting down—and because I couldn’t lay down, I was unable to have tests completed that I needed for surgery.

I finally freaked out, and after days of being irrational they allowed me to bring in my own cycler and solution. My son brought my cycler, cart, and solution to my room. The first night I only pulled off 718. But the last few nights my UF has been 1465, 1245, and 1015. I am back to being able to walk and breathe at the same time, lay on my back and complete necessary tests for surgery.

I’m now scheduled to have my heart valves replaced on Thursday.

Speak Up for Yourself

If you have to be hospitalized, don’t be afraid to ask questions about the cycler the hospital uses if it’s different from yours.

In this hospital that I am in, I learned that the techs who hook the patients up at night are in charge of the cyclers. And, when inspecting the cycler, I could see no indication of when it had last been serviced. Moreover, no one could tell me when it was last serviced.

Show hospital staff that you are dialed in to your dialysis. Demand that strict sanitary protocol be followed when connecting. And if things aren’t done properly, go up the chain with your concerns. Your knowledge will force them to see that to continue to ignore your concerns may not be in their best interest.

Stay well, and remember we don’t call ourselves Warriors for nothing!