So THAT’s how it’s Supposed to Go! MCAS and Specialists, Part Two.

My thinly veiled rant continues. I’m outlining what works well for me when I go to see a specialist. If u havent read part one and want to… It’s here.

Who’s In Charge?

The way we interact with physicians has changed dramatically in the last 30 years. We no longer walk in, describe our symptoms, take the prescription and go out the door. When it goes properly, patients are able to make an informed decision. Collaborative physicians give their patient the information that is the crux of the decision, in relation to their situation. They present options, and deciding factors, and then let the patient decide. The only person who decides what happens to my body is me. In my appointment, the cardiologist worked through the decision with me. It was a genuine collaboration, rather than an edict from above.

It’s Okay to be Wrong.

It’s not okay to pretend that you know the answer when you don’t. Old ‘style’ physicians never say “I don’t know.” “Tell me more about that.” “I’ll look that up.” Or “Next time, I might do it differently.” After all, if knowledge is their unique commodity, they had better be right! They were actively taught to speak in definites: “This will help.” Patients had to be assured that their doctor knew exactly what to do, otherwise they wouldn’t follow his orders; to believe in the treatment, or it would fail. American television has made doctors here ‘cover their asses’, except with Canadian law, they don’t have to. It is soooo hard to sue a doctor in Canada. They basically have to intended to do harm, or be grossly negligent; they have to practically commit a crime. There’s a reason for that… in exchange, errors are corrected without risking the physician’s career and driving up insurance costs. It’s part of the Canadian Social contract: we’d rather spend our healthcare dollars on doctors than on courts. My counsellor told me about a study that showed that doctors didn’t know that apologizing for an error/oversight/ etc would REDUCE how often they were sued. Wow. Isn’t that a kindergarten rule- “If you make a mistake, it’s better to fix it right away than to lie about it.”?

Do the tests first.

This is a systems issue. How it used to work: you go see your GP, they refer you to the specialist. You wait. And wait. Then, you have an appointment. And they give you a laundry list of tests to do. You do the tests, they look at them, generate recommendations, and send it to your GP. Makes it a bit tricky to include the patient in the decision making… Sometimes, they send you for tests, then you come back (after another month or two) and then proceed. Two appointments instead of one were required. The cardiologist had me do an echo, and a 24 hr BP before she saw me. Obviously, there are some areas where this is easier than others, but if they read the referral, they can probably get a head start with the tests- it’s a bit of a no-brainer.

Where were they trained?

I know this may appear a bit of a stretch, but it does seem to be the case. The specialists I seem to get along with best weren’t trained in British Columbia. (With a couple of notable exceptions- if you’re reading this, you’re one of the exceptions, kinda by definition.) In the last several years, The University of British Columbia (UBC) has put a lot of effort into their continuing education for practicing docs. They had to, because they lost their continuing eduction accreditation for a spell about 5 years ago (Yikes!). A lot of people have worked on it, and it’s much better now. The effects are still present, though. There is no close by city (in Canada) that will offer other training. There’s only one medical school in BC. Knowledge has a much better chance in dispersing if there’s a solid stream of different perspectives. Physicians here all know each other, and they get their advice from each other. All well and good if the colleague has it right, if they don’t, it can make a mess. Docs who were educated elsewhere know that UBC is not the beaming paragon of awesomeness that graduates feel (and I got my Masters there, technically in the school of medicine, so I’m allowed to say that.) Their colleagues are more widely dispersed, so even if they do ask a buddy, they might actually get a variety of opinions (this is how knowledge progresses). BC is a funny place, there’s a reason people call it “lotus land”.

The Inquiry Says…

There’s a ‘distilling’ process in positive inquiries, but I found it artificial, so I can’t remember it. But I do see a thread. When I look at the commonalities of those actions, it all fits under the umbrella of mutual respect, collaboration and care. There has to be recognition that both people are responsible for doing their part, that we are both capable of making a mistake. The doctor is not on a pedestal- put there either by themselves or their patient. And their patient isn’t on trial, trying to prove beyond a ‘shadow of a doubt’ that they have MCAS. These doctors know that the most important measure of a good physician is not how much money they make, how often they are quoted. It’s not their status, nor where they got their degree. The best measure is if their patient’s life improves. Basing one’s ego on how much you know is a recipe for disaster in the information age. Dr Afrin said to me that if he meets a new patient and didn’t learn anything new, he wasn’t paying close enough attention. It’s most certainly one of the qualities that have led to his groundbreaking work.

Personal Note

I went to see the cardiologist at the allergist’s behest (a whole other episode). I’m pleased to report that she checked, she knew what to look for (I don’t care if she learned it years ago or five minutes before the appointment. She had the right info.). I do not have any of the scary EDS issues. My aorta is fine- no herniation (it’s very rare in H-EDS, more likely in V-EDS, I think. It’s my understanding that you have it or you don’t, it doesn’t show up later). My heart is not enlarged. While I still have a mild murmur, it’s much better than it was. I don’t have any signs of mitral valve prolapse (yet, in any case). I’m remarkably healthy considering how I sick am.

On the other hand, I have a significant high BP issue, as well as an elevated heart rate and blood pressure variability. (I had three episodes of ana and several other reactions that day. ‘Variability’ is an understatement). She said I don’t have POTS, although I do show some signs of hyper-POTS (increased BP and heart rate when standing versus sitting or lying down. POTS is a decreased BP, increased HR). I think hyper-POTS and my high BP anaphylaxis are both caused by low blood volume, but that’s conjecture. When I said that two weeks off ketotifen had given me “insta hyper POTS”, and that it had improved dramatically once back on the mast cell stabilizer, she said “Really, that’s interesting!”.

I’ll take ‘interesting’ over ‘impossible’ any day. Physicians who are intrigued by outliers rather than threatened by us, who are detectives instead of talking books are becoming more prevalent. I’m very glad for it.