"You have to be your own health advocate." Really?

8/15/2022 

I don’t want to write about this forever, but I just learned some things about being ill and being healthy. Still learning, in fact.

One thing and another, this year I’ve had very high and then pretty high cholesterol numbers. My nurse practitioner wanted me to start a non-statin cholesterol-lowering medication, but because I’m me, first I tried a Chinese herbal called Red Yeast Rice (it’s the red that makes Peking Duck be red!) It lowered my numbers but because of other things going on, it wasn’t clear if it was the solution I needed.

Early this summer I started the RX my NP prescribed. Then I felt achy. Then I had a dental infection for which the dentist prescribed an antibiotic. Felt better so I went back to regularly taking the cholesterol-lowering RX. Then I got cramps and diarrhea which knocked me for a loop. Stopped the RX, felt better. This went on a few weeks. I thought I was getting better and that reestablishing good gut bacteria just takes a while. Called my NP several times through this. I didn’t talk with her, of course, but with whomever was her nurse that day. All of these people are professional and friendly, but we are talking about phone messages among four people over several weeks and calls. I was told to go to an ER if it got worse. I never felt sick enough to go to a hospital, you know?

This weekend everything hurt again so I looked on the internet and realized I might have the nasty bacteria called Clostridium Difficile. Went to an urgent care walk-in where a nurse came to the reception area to talk to just Len and me. She explained that the only way to ascertain C diff is to go to an emergency department because only they would have access to the various tests and equipment to determine what’s going on.

We went and sure enough, that’s what was going on. The antibiotic for the dental issue had wiped out my gut environment and C-diff took over. It’s very contagious in some environments, such as daycares and nursing homes, because it’s in microscopic poop that is then ingested. If a person changes someone’s diapers and then doesn’t wash their hands super carefully, they can touch something in the next frail-fragile person’s ordinary life and boom, C-diff is now shared. Many people have C-diff in them, but ordinary functional guts can keep it in check. That Len didn’t get it says we wash our hands pretty well around here plus his gut is fine and dandy.

I’m now taking one of the two medications that address this. With my insurance one cost $140 and the other (slightly more effective, they said) cost $1400. Guess which one I chose…

…

Things I learned that might be helpful to some of you.

1. It’s not helpful to keep the language of Emergency Room/Department. Medical people often call that part of a hospital Triage and we should, too. It’s where to go when you can’t make sense of your symptoms. I put this off because to me an ER is for crisis situations (like Len last fall!). I bet I’m not the only person who thinks this.

2. I have Medicare plus good supplemental insurance so I can afford the Triage center. In the US, most of us are afraid of owing thousands if we go there, right?

3. When we are prescribed new long-term medications we need help to understand how to monitor them when we first start taking them. I was so allergic to statins years ago that I am leery of RX’s now. If someone would have helped me figure out a system for monitoring side effects, I would have done better at this. The pharmacist at our CVS is way too busy to chat for five minutes about how to chart relevant effects. We need guidelines and help here.

4. Taking an antibiotic is not nothing. What I’ve learned is that side effects from antibiotics can show up a week or more AFTER one has finished the course of the RX. Depends on what was prescribed and the way one’s individual body works. Be your own prairie dog - Be Alert.

5. The doctor in the ER was very responsive to my concerns and questions and I’m changing to her as my primary care person. I have nothing but respect for the health professionals I’ve been seeing the past seven years but the system of a big clinic / one care provider who works less than full time (because they have a personal and family life, too) / various nurses – made it confusing to deal with several things going on at once.

Every friend I’ve talked to has said exactly the same. “You have to be your own advocate.”

This is where we are with insurance companies running the show. Clinics stack layers of professionals from the lowest paid receptionist one talks to first - then the nurse for your primary care person - then later that day or week they call you or you go in for an appt - before they route you through to a specialist.

On paper, this sounds efficient and least expensive but it mostly works if you get one thing wrong with you at a time. Good luck with that.

Okay, I know several of you are now or have been medical care professionals. What else should we know about how to know WHEN we should see a medical person and WHERE to go (and how to find the bank robbers to help us pay?).

Today I feel better than I have all summer. Not perfectly perfect, but awfully good.