Today’s topic: Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
Oh, Lord. What a doozy. Where do I begin?
It’s true. Having a chronic condition does make me intimately aware of the current faults of our healthcare system.
In the 80s, I was assigned to a pediatric endocrinologist who only made my mother cry during and after appointments. I was frequently in the hospital for trying to be a toddler on Regular and NPH insulins and refusing to eat. This was apparently all my mom’s fault. Not the technology available. Not the resources available. Clearly, my mom was a terrible person according to this endocrinologist.
So, we moved away from the HMO network we had of doctors and we started going to, probably, one of the best endocrinologists in the area at the time. Dr. Nancy Bohannon. My parents paid out of pocket for my appointments, which were about every 6 months or so. When Dr. Nancy wanted me to try a new insulin, we had to jump through a variety of hoops to fill the prescription in our HMO. I needed special clearance to start on Humalog and Lantus because my HMO didn’t regularly have it on their formulary list. Luckily, my regular pediatrician was semi-diabetes-savvy, so once we could contact her, we could get an in-network script written.
I turned 18 and moved out of pediatrics, finding myself with a brand new PCP. Someone who only knew me and my life based on the GIANT chart that accompanied my nurses. The topic was my most recent gamut of blood work results, which I completed shortly after having my wisdom teeth pulled. While my A1C was average for a college student, my micro-albumin test results were much higher than normal. Very different than my previous results.
The conversation with that doctor basically turned into a blame game. How I was wildly out of control and I have early signs of kidney failure. Wait, what? For better or worse, I’ve never had an A1C over 7.2%, so the “wildly out of control” thing struck me hard. I mean, I was in college. I liked the grilled cheese sandwiches in the dining hall, plus the occasional (illegal) wine cooler. But, clearly, my kidney function was suffering, so I was given a script for Licinopril, an ACE inhibitor to help protect my kidneys from further damage.
I never saw that PCP again. And I never really had a test result that high ever again. (I haven’t been on Licinopril in over 10 years.)
I decided I needed a new endocrinologist. I asked my new PCP for a referral. I was told I didn’t need one. Um, what? Yep – didn’t need a specialist. But, I needed to take a Statin in addition to my Licinopril because I am, at 20 years old, at a greater risk for a heart attack and all diabetics need to be on one.
We compromised. I took the Statin. He gave me a referral.
I fired that PCP after several mis-guided appointments and found someone who was all about handing out referrals. He was also like “why are you on all of these drugs you don’t obviously need?” Cool. Thank goodness someone on my side.
He left the practice. Fuck.
One more PCP later, I got a new job and left the HMO I had been with for 30+ years. I got to start from scratch with a new network of doctors I could pick. Maybe this is what I needed. Start over fresh. Finally have an HMO which will cover CGM technology because my previous would only do so if you were deemed “brittle.”
Nah. I have issues with script re-orders not being received. I have 3 different prescription and durable medical vendors all taking orders from one office in my HMO. Do I need CGM parts? Call so and so. Insulin? Order online here. Call Medtronic directly for pump parts. Didn’t get your order? Call this number or maybe this number. Or this number?
I currently see my new endocrinologist every three months, rather than annually at my old HMO. We don’t discuss much at my 20 minute long appointments, so I usually question why I go. But, I have “uncontrolled diabetes” marked on my chart, so therefore, I must need to see a doctor more often.
What are the common threads here? Blame. Guilt. Compromise. Inconvenience.
For a chronic illness that came about to no fault of my own and can only *kind of* be controlled by artificial means, a lot of this sure seems like it all falls on me. Like, I will only get adequate care to survive if I scream for it. Or stop seeing a doctor. Or pay a butt load of money.
Why is this okay?