Thursday, March 24, 2016

Life altering discoveries

At the end of January it randomly hit me one day that I am only three hours from Dallas, TX & that the nation's leading expert on Morphea (Localized Scleroderma) is located there. I contacted my primary care manager (PCM) & requested a referral from my nurse (who is pretty amazing btw). She took down all the information because we knew we would probably have to fight Tricare in this process. Primarily because they would first say I could see any number of Dermatolgists here in the local area, but also because Dallas is in an entirely different Tricare region - which means a different insurance company. Tricare is military healthcare. It is broken down into three areas in the continental US. I currently reside in Tricare South. Dallas is located in TriWest. You would think Tricare means Tricare, but in actuality, Tricare South is Humana & TriWest is United Healthcare. We knew that would factor into my company not necessarily wanting to cover a visit to a physician in an entirely different network. It's just how these things work. And of course they bounced back the referral requesting more information & that's where my nurse worked her magic. Right after I asked my PCM to put in this referral, but before it was bounced back, I had a visit with my new Dermatologist in the local area. I told him about the specialist in Dallas & he offered to also push a referral through, which he did. Between the two, Tricare eventually approved my visit to Dr. Heidi Jacobe at UT Southwest in Dallas! To say I was stoked was an understatement. I have had this disease for 27 years and I have never once seen a specialist, much less someone who has seen so many Morphea patients in their practice. She also runs our DNA repository & patient registry

Around the beginning of March, I realized that there were things from the course of the last 27 years that are rather fuzzy. I thought reviewing my old medical records might help me clarify & remember some things that may help me at my appointment. I especially wanted to dig through my original diagnosis records & even prepare them to take with me to Dallas. I have a stack of about 1500-2000 pages of medical records. I used to think it were fewer, but realized if you stack four reams of paper on top of one another it would closely resemble my pile of paper! I ordered these records when we prepared to leave Biloxi, MS in 2010 & move to Omaha, NE. I did this because in 2006 when we moved from Shreveport, LA to Biloxi, the AF lost my records. They were later found, but we went a few months with them unable to locate them. I didn't want to have to deal with that again. So I finally sat down in early March & began digging through my pile of records. As I did so, I organized the things I wanted to keep & made a stack (about 1300 pages) to shred! As I went through my 'keep' pile, I began organizing things into lab work, tests, patient notes, etc. For tests, I organized them into lungs, hands, heart, skin, xrays/CT/MRI, etc. 

You see, I had a very good & proactive Rheumatologist when we were stationed at Keesler AFB in Biloxi. During the years we were there it was thought that I was developing CREST syndrome (which would indicate a change in severity of the type of Scleroderma I have). I had some pretty severe esophageal issues going on, I had mild Sclerodactyly, and calcinosis on the knuckles. He was always monitoring me through tests to ensure we caught things early if they were to begin worsening or changing. In preparing for my Dallas appointment, I came across three old echocardiograms (ultrasound of the heart). And in reviewing those echos, I noticed some alarming information

Two of the echos are from 2009. The earliest is from 2007. There is a significant change in pulmonary function between the years. In my first 2009 echo, it states my pulmonary arterial pressure is estimated to be 35 mmHg. In the second 2009 echo, it is estimated that my pulmonary arterial pressure is 40 mmHg. On each, it states the patient has pulmonary hypertension. Between those two echos there is also a change in severity of tricuspid regurgitation and pulmonic valve regurgitation

Key point here = no one ever said a thing. Nothing

I then began research in earnest, called my PCM immediately for an appointment, and began losing my ever lovin' mind. 

For years (since 12/2006) I've had trouble breathing, tightness in my lungs, & through the years have developed pain in my chest {always}, an incredibly high resting pulse rate (100), pounding in my neck, trouble doing extremely active things, and systemic high blood pressure (not related to all of this, it's actually rare to have both). 

By the end of this week I will have had a full cardio workup and will be on the road to seeing exactly what is going on inside my body. It is fear inducing, anxiety provoking, and just plain scary. But outside of anxiety, I'm completely numb. I am refusing to allow myself to process what this means until we have all test results back and are able to properly assess what is going on. THEN I will begin the emotional process of figuring out how to react. How to proceed. How to deal. 

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