Mary Beth Writes

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.

 

 

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Comments

I guess you should have been a diagnostic professional! Good call on you ailment. Hopefully, you are nipping it in the bud! I know some people who fought that for quite a while, before they finally felt better. Hope that’s not the case with you. Sending healing thoughts. ❤️

So sorry!!! Yes, good medical care is hard to find. It is unbelievable that with the cost of medical treatment, we are never sure if our diagnosis is really accurate, I tend to question a lot and do my own research.
Mary Beth's picture

It is nuts, isn't it... All this & to get care and yet so much of it is on us, not the professionals who are allotted 15 minutes to see us.

As Mary Beth says, we have pretty good insurance. But, for folks who don't, the bill for the Emergency Room is a lot more. It is better to go to the office of a good physician - which is why it was so frustrating when Mary Beth talked to the nurse. That person was faced with either guessing what the problem was over the phone ... Or sending us to the ED. This is just a mess on many levels.

Getting a correct diagnosis is the number one thing and not easy for all reasons you relate. If there is something obvious going on -- like you are a male mid-heart attack, diagnosis is obvious and treatment is too. If you are a woman with almost anything, good luck. I have been extremely fatigued for some months and am just at the beginning of the finding out WHY. One possibility is long Covid and so far there is no treatment, so will this be my life from now on? We definitely have to advocate for ourselves, but that's a challenge. I find that the Mayo Clinic website is my go to source for advice about meds, OTC herbs and supplements, symptoms, illnesses, treatments, self-care, etc. They are mainstream, but not overly negative about alternative treatments and I feel that their info is trustworthy. WebMD is pretty good; the info is often identical to Mayo, but I have more confidence in Mayo. Once one has an accurate diagnosis, there are organizations that are dedicated to various conditions which can be helpful. C-diff can be very dangerous--do be persistent in getting proper treatment. Wishing us all good health. ❤️
Mary Beth's picture

I read Peoples Pharmacy about once a week (Thanks, Jayne..). A husband & wife team, both licensed pharmacist with years of experience, collate the latest in both medical info plus ideas to treat common ills which are rooted in the treatments and cures of old timers. And yeah, Mayo and WebMD. We have a reader here who is a Mayo website editor. Cuz we cool...

Glad you feel better! I have A lot of feelings about the medical profession. Grateful for many things, and truly pissed at others. Advocating for oneself is crucial. Patricia

A few years ago, I had a nasty bout of perforated diverticulitis, and was hospitalized - eventually needing a few inches of my colon removed. I was on antibiotics (the name literally means "anti-life"), and was told by the doctor to take probiotics while I was taking them, and to continue on them afterward for a while to avoid C-diff, and help restore the good bacteria. While antibiotics can be life saving, they are not without some nasty side effects. I'm so glad you are doing better, and you continue to improve to perfectly perfect.

We are so lucky to have a "feeling" of how this whole health care system works. Imagine the pain and frustration those who aren't so lucky go through.

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