Day 3

We took a lazy morning this am.  Breakfast in bed and a long leisurely shower with unlimited hot water and no small people barging in.  It was nice.  The cardiac nurse called and moved my tilt table test up to early afternoon.  The Tilt table test wasnt as bad as I had envisioned.  Basically, they lay you on a bed with a foot plate at the bottom and then gradually stand you up, over time, while monitoring your pulse, EKG and blood pressures.  About 5 minutes in, I started feeling chest pressure and shortness of breath.  Ten minutes in, I had EKG changes.  Those changes weren’t life threatening, but because I was feeling symptoms, they decided they would stop the test.  They had enough data to confirm a POTS diagnosis.  The doctor that preformed the test, is supposedly the number one POTS doctor in the nation. He advised that I should have a stress test in the near future to see how my ventricles are filling upon exertion and rule out any other issues.  He had hoped I would be able to have that done at the clinic and then see him in his office, but that wasnt logistically possible.  So, I will go home and have my doctor order a stress test and send him the results and schedule an appointment with him later.

I also saw the internal medicine doctor today, just to review all of my appointments and results while i have been here, at the clinic.  He has to be the most genuine and kind Ive ever met.  I think he is probably a good doctor too, just not when it comes to POTS.  So, I didnt find his information very applicable or useful.  However, he explained to me, that he is my point man from now on.  Any time I need anything I can call him and he will refer me on to the appropriate people.  He already has referrals in place for several doctors, should I decide to come back and see them.  So, its nice to know that if I cant find help closer to home, I have an easy option to come back to the clinic.

I decided to cancel my appointment with the rehab/spine doctor tomorrow.  I want to go home.  My back is a mess, but its not an immediate concern, by any means.  Im also content with my spine doctor back home.  So, we will get up in the morning and start our trek back to Illinois.  I miss my kiddos.

I suppose Im leaving here with what I came for.  The diagnosis of POTS and Ehlers Danlos are official.  But, I really dont know any more than what I knew coming here.  No real direction on how to manage either of these things.  So, I feel validated and relieved on one hand, and frustrated and annoyed on the other.  The clinic as a whole has been wonderful.  Every doctor I have seen has been genuinely caring and helpful.  Our system is so broken though.  No one is linking the pieces together.  So, I still have many questions.  But, I think if I can come back and see the autonomic cardiologist I met today as well as the autonomic neurologist, I can have many of those questions answered.  Im happy to come back, knowing I will be treated so well, but wish it didnt require and 8 hour trip. For now, Im just going to be content with what we did accomplish, go home and collect my thoughts and plan exactly what I need for a retun visit.


2 thoughts on “Day 3

  1. Wow, I’m impressed you decided to go back home! But having small children means to have your heart go walking around outside your body.



    • We went back and forth on what to do for a long while. It was a hard decision, but I think I know what tests I specifically need now and my GP will be happy to order them. So, I can do the testing at home and then come back out or even possibly do a video appointment. Im not sure how hard those are to get, but I know its possible. If im going to come back I want to see both the autonomic neuro and cardio at the same time so they can work together. That will take some coordinating that I can wait around on….and Darren needs to get back to work, its busy season…so….its really inconvenient to be so far from good help!


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