Preventive Medicine Means Something Different Than You Think

In the end no one will sell you what you need,

You can’t buy it off the shelf,

You got to grow it from the seed.

 - Chris Smither, No

Today, I met with the endocrinologist who is the gatekeeper – I mean, the specialist  - at Kaiser who I have to convince that I can’t tolerate statins, and who would, I’d dared to hope, authorize a referral outside the Kaiser system for periodic lipid aphresis to maintain healthy cholesterol levels.

Doc:  So, I see that Genetics declined your request for a test to determine if your high cholesterol is familial.

Me:  Yup. They said if I had heterozygous familial hypercholesterolemia, I’d already be dead. So, I’ve got that going for me. Only have the homozygous kind. Probably. Guess without the test, we’ll just have to “think” that’s what it is. Like the physical medicine specialist “thinks” my statin-caused pain is probably from arthritis, not statins.

Doc:  Do you want me to refer you to see Genetics to discuss it further?

Me:  Nope. I’m done. I pick my battles, and you win this one.

Doc: (Sputtering in discomfort. (Although med school may have included a class in how to deliver bad news to a patient, they apparently didn't cover receiving bad news from a patient.)

Me:  Doc, with all due respect for you and the fact that I believe you honestly care, no. You think I’m not allergic to statins and should increase my dose because it’s the “treatment of choice”. On the other hand, I know my family history and personal medical history better than you and your computer. Based on over 30 years personal experience, I am unable to tolerate statins without pain that affects my quality of life. I’m tolerating the pain caused by the minimal dose - which is the maximum dose I intend to take. So, forget the genetic test which was my attempt to qualify for a clinical trial of a non-statin cholesterol lowering drug only open to those diagnosed with familial high cholesterol. I’m that tired of being seen as a stupid old woman who conducts her medical research on internet conspiracy sites and is expected to swallow whatever you dish out without question or complaint. I’m sorry that you are so surprised to find I would like to participate in life and death decisions about my medical treatment.

Doc:  (Clearly discombobulated) Well, I’d like your records from previous provider to confirm your allergy to statins.

Me:  No. I did request them, but we all know that never works. I also know what I know. And if you have to put your hands in the spear-wound in my side to know I’m bleeding out then you’re no better than the patronizing people in genetics or my previous cardiologist. I’m telling you about my condition based on my experiences since I started taking Mevacor (one of the first statins, if I’m not mistaken) when it first became available in the early 80s. There may be some karmic balance here in the fact that while my word is clearly not enough for you, your words that you give a crap are not working for me. And by the way, I’m unbelievably sorry for being such a bitch, but I’m too old to play the game any more. Nothing personal, ok?

Doc: (First trying to insist it’s not a game, but put somehow put off by the look on my face) Well, what do you want me to do?

Me:  Refer me to UCSD for lipid aphresis?

Doc:  No…. (for various reasons I stopped listening to after I realized I’d have to return to persuade her department chair to get a referral and made an executive decision not to bother).

She did suggest there’s an increased risk for mortality with aphresis and I should do more research, and I opined as how I’m already at a pretty high risk for mortality what with my cholesterol, other stroke risk factors, and a-fib and suchlike. I’m so fucking tired of this shit.

Doc:  So, what else would you like from me?

Me:  Remind me to request my medical records again, follow up with you via e-mail in 2 weeks and continue to take the half dozen prescription and OTC meds I’m taking for cholesterol without regard to how the side-effects diminish my quality of life. And, tell me to have a good day. Ok?

Doc:  Yes, that. And have a good day.

That’s how I recall this morning’s visit to a nice young doctor who only wanted to help me but was confounded by my intransigence in the face of her obvious empathy and determination to stick to the playbook. She might have made some notes in my file with her version of how things went slightly differently.

The result however, is not in dispute. It was a waste of both our time. I was prevented from getting a medical solution to my high cholesterol problem. So, now you know what preventive medicine really means.

So, I renewed my medical marijuana card. The waiting room ambience was not as classy as Kaiser, but I have a solution to my pain problem that doesn’t involved increasing use of the addictive opiates prescribed by Kaiser. We’ll worry about the a-fib when I meet with my cardiologist later this week. Really looking forward to that.