finding a POTS doctor…

You might remember that my POTS cardiologist retired last August and I have been struggling to find a replacement. I was fortunate to find my former cardiologist one month after I was diagnosed with postural orthostatic tachycardia syndrome (POTS) and was a patient of his for over 11 years. So, I’m not all that familiar with the whole concept of POTS doctor-shopping, as I haven’t really had to do it.

I called several doctors who are with the same hospital system as my former cardiologist and have repeatedly been told that they are not accepting POTS patients. Period. In fact, they even circulated a letter to POTS patients (I have yet to receive that letter, but an acquaintance sent a copy) flat out stating that you are welcome to call one of their other cardiologists “as long as you are seeing them for other cardiac related needs that is not POTS related.”

There’s another local POTS specialist – she’s the one that ran the ivabradine study that I participated in several years ago – but she is no longer accepting new patients. And to be honest, even if she was accepting new patients, she’s not the right fit for me. Ivabradine caused too many side effects for me, and I have heard from other POTS patients that she isn’t much help if you aren’t interested in ivabradine.

There was an article recently in the Washington Post that discussed how difficult it is to find a POTS doctor. Wait lists were already long before COVID, and now since many long-haulers are developing POTS, the wait lists are twice as long. According to the article, some wait lists are up to two years long. That’s just to set foot in the door. If you’re interested, you can read that article here.

Finding a new doctor feels like an uphill battle. There are so few POTS specialists as it is, and even fewer that are open to seeing new patients, and then even fewer that are willing to do something other than prescribe what I call the “Big 4” – beta blockers, ivabradine, midodrine, and fludrocortisone. I have tried all of those, and all caused more side effects than benefits – some rather serious. I’m super sensitive to meds and need someone who will work with me on that front. I’m discovering how rare that is.

Generally, I don’t need to build a relationship with a doctor. When it comes to my PCP, neurologist, gynecologist, etc., I’m fine with an impersonal business relationship where I describe the problem (or go for a standard exam) and they try to resolve it as efficiently as possible (with a certain amount of respect, of course). I don’t need to know anything about them, and I don’t care all that much if they have any interest in me, as an individual. It’s a business transaction, and I’m fine with that. I’m sure a large part of that is due to the fact that I don’t need to see other doctors very often. I might feel differently if I had ongoing health concerns that were being treated by other doctors.

But with my POTS doctor, I need it to be a bit more personal. We don’t need to be BFFs (and to be clear, I don’t want to be), but they need to see me as human, and not patient #1234. Successful treatment requires that I allow myself to be vulnerable in front of them. There’s a shallow intimacy that comes with sharing how scary it can be to know I’m about to lose consciousness and not know if I’ll be able to stop it, or what it’s like to constantly wonder if I’m showing signs of early-onset brain disease, like my mom, or if it’s just a bad day for brain fog. We can’t just throw a band-aid on those. I’m not baring the depths of my soul, but I’m also not casually discussing the weather. If I’m going to be semi-physically and completely emotionally exposed in front of someone, I need to know that my nakedness isn’t a billable insurance code.

POTS is my greatest weakness. And, yes, we can debate for hours whether having to overcome obstacles is a strength and we can post infinite warrior memes and inspirational quotes online, but at the end of the day, I’m still left with the inability to stand for 10 minutes, a body that doesn’t pump blood as efficiently as it should, and legs that aren’t always strong enough to support me. So at the very least, POTS does make me physically weaker. And that’s okay. I accept that. Took a while to get there, but I did. But I need a doctor who will hold that gently in their hands, and not say something like “oh, and by the way, you’ll never be able to have kids,” as they walk out of the room, like my first cardiologist did, as if that wasn’t the most devastating thing for a 29-year woman old to hear.

For the record, people with POTS absolutely can and DO have kids. That guy was just a dumbass.

A friend gave me the name of another local cardiologist. She’s young and doesn’t know a ton about POTS, although she did study under my former cardiologist. I figured it was worth a try, so I gave her office a call and have now had two appointments with her. With regards to her personality, I love her. She is perhaps the nicest doctor I have seen. At our first appointment, she asked something personal about me, I asked something personal about her. We each pulled out our phones and shared photos. We connected for only a few brief moments, but those brief tender moments are, after all, where a relationship begins.

As a general cardiologist, she is excellent. We ran some standard cardiac blood tests, as I have a pretty clear genetic predisposition for heart disease and am about 9 years away from the age my dad was when he had a heart attack. She’s a big proponent of integrative medicine, incorporating all of the nutrition and lifestyle ways we can combat my shitty genetics. And I appreciate that, I’m absolutely here for that. But she doesn’t know a ton about POTS, and I fear the only scribbles on her prescription pad have been for the Big-4. I’m not cancelling my next appointment with her just yet, but in the meantime, the search continues.

I realize again and again that this is really all you have to offer people most days, a touch, a moment’s gladness. It has to do, and it often does. – Anne Lamott

Smell ya later.
– Linds