Tuesday, May 21, 2013

Wrapping Up

So... after all my testing and new diagnosis of EDS, I met with Dr. House again. It was a bit of a frustrating appointment. We have a personality conflict that makes communication difficult. He is very paternalistic, wanting me to just accept what he says as he talks over my head and growing frustrated if I ask questions. I, on the other hand, am a very obnoxious patient who asks a million questions, and I question everything that a doctor tells me. It was a painful combination.

For example... if a doctor asks me to do something complicated (e.g., wanting my to drive over an hour to get blood drawn at his office), I want to know the reason why, and if we can do things differently (e.g., could I get blood taken close to home and have them fax him the results?). If the doctor still insists on the hard way, I need to know the reasons why before I agree to do it (perhaps it's a specialized test that needs to be handled carefully and immediately frozen, and he doesn't trust another office to do it right. Or maybe there's no reason at all and it's fine to do the tests at a more convenient location). So we went around in circles for quite a long time.

I later found out that someone had written on top of my chart that I "refused" two of the tests Dr. House wanted done. This wasn't really accurate; I didn't know why we were doing two of the tests, so I asked the technicians the purpose of the test and why I needed it, what it might show/rule out, etc. They told me they didn't know (couldn't even explain what the test was), so I asked who might know. They told me that the doctor would know, but couldn't talk to me until my appointment.  So I asked if I could wait to have the test done until then. I didn't want to have unnecessary tests done. The tech agreed... but I guess told the doctor that I was refusing care. This sort of set the tone in a very negative fashion for the appointment.

Anyways, the bottom line was that my tests showed that as I stand up, my cardiac output and stroke volume decrease substantially. Basically, my blood is pooling in the extra-stretchy veins of my feet from my EDS, and so each pump of the heart is pumping very little blood. To try to compensate for this, a multitude of physiologic changes begin to occur in my body. My heart rate greatly increases, I get low on oxygen, so I begin to hyperventilate, which causes my CO2 to build up, which creates lactic acid and other toxins that aren't so great for the body. On the more subjective side, I get very lightheaded, shaky, turn bright red or very pale, get blurry vision, sweat through my clothes, and we had to stop the test because I got so nauseous that the nurse was holding the trash can under my chin for the last few minutes. All that just from standing up!! This confirms the POTS diagnosis (not that anyone doubted it, but now Dr. House has a "baseline" on me with more numbers and data for his pretty charts and graphs). 

The stress tests showed that I push my body literally beyond what it should be able to do, but even as I put forth greater than 100% effort, my body is only accomplishing something like 80% of what it should be able to do. So I must work much harder than a "normal" person to just live and walk around. This contributes to my extreme fatigue. Another contribution is my high heart rate - you'd have to run a mile or so to get your heart to the level where mine hangs out when I'm at rest. So even when I'm NOT exercising, my body feels like it is working out!

The doctor decided that I would come back to the office to start a new medication - one that helps my blood vessels "squeeze" better. This will help to treat the POTS issues that are induced by the blood pooling in my blood vessels, which are extra-stretchy thanks to EDS. This medication can cause potentially dangerous spikes in blood pressure, especially in people who tend to have weird reactions to medications (like me). So I must be monitored carefully and we will very slowly titrate the medication to an effective dosage over the next several weeks. I am also to meet with an exercise physiologist, a dietician, and a biofeedback specialist, all of whom specialize in treating patients who have POTS.

Unfortunately, my insurance decided that they did not want to go along with any of this, so I am pursuing alternate routes, but I am excited to have a multi-disciplinary mindset going on here. I am optimistic that it will bring about good things. At any rate, the tests help me to know and understand better what exactly is happening when I feel "POTS-y." And I know what kinds of things trigger my symptoms, so I can avoid these things. Hopefully we will be moving towards better management of my POTS!

Hannah ;)

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