Saturday, October 19, 2013

Cleveland Clinic

This is another post I wrote but did not publish.... wow, so interesting to read now!!!!


November  22, 2012
We spent an incredible day at the Cleveland Clinic!!!  Happy thoughts fill me when I think of that place! And spider man comes to mind too! :)  (he was there, along with captain america!)

The greatness actually started before we even got there.

I know it sounds silly but after spending a lot of time on the phone with other Dr. offices/ hospitals/imaging centers, etc. this past year.... I was even impressed with their registration process.  First of all they answer the phone by saying, "Hi! Would you like an appointment for today?"  Haha!  Their policy is to try and get you in within 7-14 days of your call!  When they were trying to figure out which Dr. I should see, the man scheduling said that he was going to get a nurse on the phone to help us figure it out.  The nurse suggested I see both, a neurologist and a cardiologist.  They knew I was coming in from out of town so they switched some things around so that both appointments would all be on the same day!!  Wow!  :)

Debbie and Greg's sister, Emily watched all four crazy kids for us!  We dropped them off yesterday, tuesday the 20th and then he and I drove over to Cleveland last night.  We both were filled with so much worry and stress about the pregnancy.  We worried that they wouldn't even be able to do any testing since I was pregnant!  We called and told them our news, and they said that they would note it for the drs to see.

Here is an outline of our day for my own records:

November 21, 2012-day before thanksgiving
7am check in
7:15 EKG
7:45  Met with Dr. Shiavone, the cardiologist.  He was incredible!  He checked out every conceivable spot of my heart.  He spent over an hour with us!  That has never happened before!  He was respectful, kind and above all else, he just listened!!  He did not charge forward with any pre-conceived ideas.  He took it a moment at a time and asked me questions to clarify!  I am so humbled to have had such a caring Dr. !!!  He said he could tell I was a runner, and that I was very healthy, and that my heart sounded perfect!  He ordered some tests that were scheduled for later in the day.  He mentioned that my pregnancies were the awfulness that they were because of a condition called POTS. Postural Orthostatic Tachicardia Syndrom.  And that it could still be causing me issues now!!!  I get to more of that later!
9:00 Dr. Shiavone had ordered some blood tests so we did those right there in the hospital.
10:40 Met with Dr. Wilson (at this point we did not want to see one more neurologist, we were sure they were all the same!)  Of course though, Dr. Wilson was phenomenal!   From the moment he stepped into the room we knew he was different because he was SMILING... (neurologists don't smile, they have to think super hard so they cant smile!!  At least, that is what we thought after meeting all of the other neurologists!  Haha).  He said he did not want to read Dr. Shiavone's notes because he wanted to come to his own conclusions.  He kept saying, "I want to hear your story, tell me every detail...."  And so we did, we talked, he listened.  He did is neurology tests there in the office and then said,"I think this is POTS!  He got up quickly from the room, was gone just a few minutes and then came back and handed us a printout of the wikipedia definition of POTS.  Greg and I read over it, and then just stared at each other in disbelief!  Wow, 7 months of agony with lots of different medical professionals  with absolutly no answers, and now we had spent just a few hours with 2 drs at the Cleveland Clinic and they had both independently diagnosed me!!!! Such a tender Mercy!  We felt it in that Dr.s office!  The feeling of peace washed over us!  That He was going to help us, with the help of these Dr.s!
Dr. Wilson ordered a slew of blood tests (24) just to rule out all of those strange anomalies.  Then he said, he thinks that my pregnancies were definitely to blame for POTS and that my numbness issues now are to blame as well.  Further research will be needed so that I can understand this but... for now, just knowing what to research is exciting!
Dr. Wilson really is amazing!  After spending more than an hour with us he said that he truly does feel that the POTS is causing the numbness on my left side.  I am excited to research that..... ??  He said a few things that are so neat that are giving me tremendous hope!  He said, " I dont think you have MS, actually, I think we can rule out MS......, No, Stephanie, you do not have MS!"  I needed to hear that!  It brought me so much comfort!!  Dr. Wilson told us that he has a patient who flys in every few months to check in with him and that she is a runner!  A runner who has POTS!  He said she functions for the most part with ease, and that over the course of treating her for the past couple of years that she is now up to running 5 miles a day.  He said that I should probably find other things to do other than running.  He said that I will probably find other things that are more enjoyable exercise wise..... (He doesn't know me well enough yet, haha)  Running?!  The thought has me so excited that it might be a possibility! :)  Dr. Wilson said that priority number one is getting me through this pregnancy healthy, then maybe, we can worry about running, or excising in general.
He gave me some great information to move forward with.  He said that he does not want me to be on any drugs.  Being pregnant is hard enough on my body so adding medicines that will throw other systems and organs out of balance would be bad!  He said that one of the big antidotes to POTS is salt!  Yep, salt!  As much as i could handle.  I explained that I throw up a lot when I am pregnant so he said that a constant IV is something that we need to look into so that I can get the adequate salt intake to increase my blood pressure. The other thing he said that would help is yoga.  He said yoga helps to strengthen muscles without requiring my heart to work as hard as other exercises.  He said that I would need to experiment with caffeine to see if it helped or hindered me?  So we have good things to move forward with!!  He wants to see me in February sometime for a recheck and then again after the baby is born to get a full workup....
12-5pm For the rest of the day we just finished up the tests that the Dr.s had ordered.  I had a bubble heart ultrasound, a Stress test, an ultrasound to look for blood clots in my legs and a lot of bloodwork done!

It really was a great day.  It was a total blessing being there.  Its a special place.  People were smiling as we roamed the halls and foyers and open areas of the hospital.  When we checked into our different appointments and tests, every single employee seemed happy and kind.  That is so rare!! I Love the Cleveland Clinic!!  As I type this I feel overwhelmed at what I have before me, a difficult pregnancy, numbness, headaches and chest pain, after the pregnancy health questions... but we are so grateful that we are getting closer to getting healthier.  The gnawing sickness that I feel is depressing though.  I am trying to imagine taking good care of my 4 kids while feeling this way.  Sad.  Uggh.  Having a diagnosis of WHY can only help, right?  I really really dont want to be sick.  But since the sickness has already began, its hard to feel like having the WHY will really make any difference at all!  :(

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