Day 2

This day was productively unproductive.

First appointment of the day was with Neurology.  The entire point of this trip was to see an autonomic neurologist as they are the ones who can work up and diagnose POTS.  The neurologist I saw was not an autonomic specialist and was actually more concerned with my lumbar issues and nerve damage than POTS.  It took a lot of explaining to help them understand that while my back issues are profound, they were not why I was there.  Eventually, he decided that I would be better served by cardiology, but he would order a QSART, tilt table and a small nerve fiber biopsy.  Ok…thats all great, in theory, but none of them can be scheduled while I am here and I cant come back in two weeks, as suggested.  So, I left that appointment feeling defeated and headed to the GI appointment.  I didnt really feel I needed to see GI, but I was there and I do have absorption issues, so I never cancelled it.  But, I should have.  The GI doc I was scheduled with today was a swallowing specialist.  I dont have any swallowing issues.  She asked what brought me in today….I just laughed and told her I was hoping she knew!  If you dont laugh, you cry, so laugh, we did.  So, I asked her some basic questions and bounced some ideas off of her and she held the baby and we left.

After two bum appointments I was really feeling down.  Darren bought me a really big brownie.  The man knows me well.  I drowned my sorrows in chocolate and we headed to the genetics appointment.  I was fully expecting to be disappointed again.  First, we met with a genetics counselor, who took a very detailed family history.  Then we met with the genetics doctor, who did the physical exam.  He agreed with my hunch and confirmed the diagnosis of Ehlers Danlos type 3.  This was so important.  Not only for myself, but for the kids and getting them the evaluations they need.  We also did some genetic blood work to rule out vascular type EDS.  Neither of is felt that I have vascular type, but due to the severity of thIS type, we thought it prudent to rule it out for certain.  Those results will be back in a month or so.

Upon leaving the clinic for the day, I decided to try and get the tilt table test scheduled, as that was one of the huge reasons we came here.  They way they do the test is very specific to getting information regarding POTS.  I specifically need the test done at the clinic.  3 hours on the phone playing ring around the rosy back and forth between the same two departments.  Finally, after I was um, a bit, er, firm, they sent me to the cardiology lab to speak with a tech.  I let the tech know, that I did not drive 8 hours here to go home without this test.  At this moment, I was very thankful for all the hours previously spent on the phone on behalf of my patients, because I know the system and when to push and how.  I pushed, she responded and its scheduled for tomorrow at 3pm.

So, two appointments with no helpful information, one appointment with a confirmed diagnosis and a whole bunch of unanswered questions.  Getting diagnosis finalized is important.  But, a simple diagnosis doesnt really help me know any more than what I knew when I came here.  I already knew what was wrong when I came here.  My genetics doctor was Greek.  He said to me, “I think we can agree that the USA is the best country in the world to live in.  Rich in wealth and opportunity.  But, its the pooest nation of most when it comes to healthcare.  Its broken and doesnt work well.”  He is exactly right.  Every doctor only wants to look at their specific system specialty.  No one looks at the whole patient and helps to link symptoms with the bigger issue.  I have been overall pleased with the patient centered care here.  Everyone is willing to listen.  Everyone is helpful and sincere.  No one seems rushed.  The experience is nice, but the system is still broken.  I cant stay here for months and see every specialist, I just need a general idea of how to function well, at home.  All this to say, I will likely need to come back later for more specific care, but Im going to take some time to research who, exactly I need to see.  My foot is in the door here and every doctor has told me if I want a referral here or there, all I have to do is ask.  So, Im on the right track, but not as close to the end as I had hoped.

Tomorrow I have the tilt table test.  Basically they will strap me down to a metal table and flip me all around until I pass out and in doing so, they will records all sorts of information.  Sounds fun, right?  I am not at all excited, but I do hope it gives some good information.  After that, we check back in with the internal med doctor.  Im anxious to hear his thoughts on today and to see if we are able to tie up any loose ends at all.


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