As you guys know, after a long process I had finally gotten into see the dysautonomia specialist at Vanderbilt. I was so frickin excited to meet with someone who understood this illness and worked with it daily!
While the first visit went ok, there were some problems scheduling tests and we were left with no clarity as to whether my diagnosis was EDS or HSD. But overall it was a decent experience because I got the necessary tests and a treatment plan. So we accepted the commute and decided it was well worth it.
So I went back last month for a follow up and let me just start by saying I will NEVER be returning.
I could barely make it through the appointment without tears. She starting by telling me that physical therapy wasn’t exercise, and that I was lazy and not helping myself. Then, she went on to say that there is no excuse for not being able to keep up with college because her nurse has POTS and makes it to work each day. She also asked me if I was sure I knew how to take my BP.
All of that was hard to hear, but the real kicker was the clinic note posted the next day. First of all, she diagnosed my BP (which gets as high as 180/160) as BENIGN hypertension!!! Then she added as diagnosis of Hypokalemia. Which not only had she never mentioned to me, but my potassium levels, that she ran, were 100% normal. (According to both her hospital guidelines and ALL of my other physicians.) She also has failed to respond to my messages asking about this diagnosis.
Where do you go when what you where told was the best completely fails you?
Not only is my current quality of life largely impaired by this illness, but my future is too. Not having my hypertension under control is leading to organ damage, ( My kidneys, my heart, my arteries, my brain and my eyes are all being affected)
It’s something that needs to be addressed, and is certainly anything but benign.
About six months ago I was connected to a local electrophysiologist who has an interest in POTS. Even though I’ve never seen another patient in his waiting room younger than 60, and he has to refer out to other facilities for certain tests, he has an interest in my case and is passionate about helping. Furthermore, he agreed to see me while dozens of physicans have turned me away because my case is to complex.
This Monday, he told me that I should be proud of my progress. That in the six months I’ve know him I’ve started school again, I’ve been able to travel (even if it is only short distances and for limited time) and I was able to complete the charity walk I was passionate about (even if it did knock me out for days after.)
He pointed out all of my progress and that “lazy” was far from what I was. That even though I wasn’t at a “normal” level of functioning that I am functioning to the best of my current ability, and that I’m doing the work to improve.
That night I cried.
Now I’ve cried a lot after doctors appointments. Hard diagnosis, bad test results, inconclusive test results, meds not working, no clear treatment plan, condescending physicians, all of it. But never, not once, had I cried positive tears because of a doctors appointment.
Not until Monday.
So the specialist that I needed wasn’t the one getting the publicity and grants. It was the one with not only a passion for his job, but compassion for his patients. And luckily for me, I found him.