Tuesday, March 2, 2010

We aren’t in Oz anymore!

Last week my husband and I packed off and headed north.  We were on our way to visit one of the highest regarded doctors when it comes to POTS/Dysautonomia.  As we drove our way through the snow I was starting to wonder if this was a bad idea.  Why not just turn around? We had every reason to.  We were experiencing white-out conditions along our way to Toledo.  NO way was I going to cancel!

Most people who have POTS have heard of Dr. Grubb in some form or another.  Most have read his name in the studies and websites with information about this annoying syndrome.  Some have even read his name on forums that have other members who had appts with him.  The one thing that these people all know is how hard it is to get into this doctor.  I was told 6 months to a year wait(could possibly be longer).  I consider myself lucky in this aspect.  I was able to meet his assistant within 3 months and had an appointment with him just a month later. That appointment would be rescheduled due to me not doing well. 

I will tell you the thing that bothered me at first about this appointment was the time I had to wait in the lobby before I saw him.  I’ll be honest and say it was two hours.  I will also tell you I’d do it again in a heartbeat.  Dr. Grubb is not like any doctor you’ll ever meet.  He doesn’t let time have any say in the care he gives you. I think if I needed 12 hrs of his time that he would’ve gave it to me.  The care and attention I was given was greatly appreciated.  He talks to you honestly and in a caring way.  He makes you feel like a friend and not just a patient.  He even shared things with me about his personal life that I have never experienced with another doctor.

During this appointment I mentioned to him about the blackout periods that I’ve had where I’ve been out for hours at a time.  This obviously concerned him as much as it did me.   It was then decided that we should implant a loop recorder under my skin to see if my heart flat lines during this time.  He has had numerous patients with this problem.  I was also giving a prescription to try another medication that I’ve been on once before but this time at a different dose.



We also discussed how my gastric bypass surgery is causing most of the medications I take to not even be absorbed.  We talked about how copper deficiencies have been known to cause seizures in gastric bypass patients as well.  Not to mention the huge increase amount of gastric bypass patients he now sees.  This surgery has been known to cause POTS.  While I’ve had it all my life the surgery did cause stress on my body and has thrown it back out of the “remission” of dysautonomia.

Upon the end of my visit I was told that the hospital would contact my insurance first to make sure they would cover it since they are an university hospital.  Once this was done they’d let me know when my surgery is.  My surgery is now scheduled for the end of this month.  Also the doctor was very kind and mailed me a book called: “When Bad things Happen to Good People.”  He also sent me a lot of information about my condition and other works that will be of use to me.  I am very pleased with the care that I have received from Dr. Grubb and his staff.  He really is a special doctor and the wait to get into him is very worth it.  I look forward to seeing how this testing turns out in the end. 


For more information about the Reveal DX please click here. Click here for an overview of POTS

No comments:

Post a Comment

Give me your thoughts!