The Not Really an Update Update

My life has pretty much been completely taken over by health challenges since June, which if you follow my blog you know. But for months now, there had been a light at the end of the tunnel… an appointment at Vanderbilt, THE place to go for all problems dysautonomia. I was told how they are the best of the best, and if anyone could set me on the right path it would be them.

I’d had this appointment booked for months, I would finally get to meet with someone knowledgeable and that would be willing to work with my local GP on a regular basis following the initial appointment. This was promising enough to travel the almost 600 miles to Tennessee. I was expecting the trip to be hard, as I would have to go off of all my meds before my Tilt Table Test, so I knew it wouldn’t be all sunshine and rainbows. I knew in reality I would probably spend the week getting sick in a hotel room, but having answers was worth it.

Well, it has been almost a month since this appointment, and I really don’t have any answers. My diagnosis sort of changed from hyper mobility spectrum disorder to Type 3 EDS. And by that I mean she wrote EDS on my chart and when I asked if that meant she believed I had EDS rather than HSD she responded in a one line email saying they’re the same thing. (According to the EDS website they are different, but I’m confused and so is my GP.)

They also suggested that I get a plasma volume study, which based on my own research I think could be very beneficial. After the appointment we stayed in tennessee for 4 days, and we were assured they would get us in for the study. Well, on our last day we finally got to speak to the head of radiology who said the drug needed for the test takes over a week to arrive and it wasn’t going to happen. So, the nurse assured me she would talk to her drug rep and get a list of hospitals that do the study. But why wait? We called all the hospitals in VA and not a single hospital does this damn study. We decided John Hopkins would be a manageable day trip, and after getting the orders send, the scheduling department said they haven’t been able to get the drug since December, and that they weren’t going to schedule us. So now, it’s a month later, and the nurse from Vanderbilt finally responded to my email, where I asked if the drug rep ever got back to her by saying “the dr. is aware you won’t be able to get the test in the near future.”

At this point all that this trip has given me is a loose plan of possibly switching meds, that seems like it will be more detrimental than anything else. Some lab results that are alarming. (Who knew norepinephrine levels could get so high!) And a lot of lost hope. The light at the end of the tunnel has dimmed.

Sure, I have good days. But I also have days like yesterday where I ended up sitting on the floor in the middle of Victoria Secret with my BP 171/135 debating whether or not I should go to the hospital.

It seems very doom and gloom saying that the light has dimmed, but it hasn’t shut off. There still is a light, and it’s brightness depends on the day. But it is definitely still there. Primarily lite by my family and friends that are always there.

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4 Comments on “The Not Really an Update Update

  1. Hang in there honey – this sucks, you don’t deserve it and I wish I could help. Anywhere in FL or MA do the test? I know a lot of docs 😍

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  2. Emma, we all love you loads and anytime you need more from friends and family; anytime/any way we can help….just let us know!! XO

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