July 18, 2017
This story starts about October 5th of last year, maybe a bit earlier, I just wasn’t feeling well. I am a Sjogrens patient so generally speaking days can be challenging but during a follow appt I was trying to express to my rheumatologist that I just was feeling more fatigued, more achy, just more not well. He did NOT take my blood pressure during that visit and I had a migraine that day.
Overnight I my migraine worsened and I had crushing chest pain that radiated down my arm and a friend (RN) took me to the ER where they treated me for a migraine and did an EKG but no labs and sent me home with headache meds (BP 220/112). That was the day of dissections….yes more than one. I’ll get to those. Over the summer I am noticing I am losing my hearing, literally and bilaterally. So we are now in Nov 5th during a follow up hearing appt and my bp is 227/117 and my Dr INSISTS I go to ER and I spend five days in the CCU and no one can figure me out except they found the dissection in my heart a nice size one. And I am shocked that I have a TEAR IN MY HEART from BP?!
So by Gods grace I met my nephrologist to takes over and assembles literally a team of lifesavers because he suspects and confirms I have FMD-fibromuscular dysplasia. I have an 85% blockage in my kidney, I have an blockage from the dissection in my heart, I have dissections in my carotid arteries oh and lets throw in a aneurysm in my brain with a dissection in there as well. Needless to say all of this was a total shock and I was terrified. I felt like a walking time bomb. I thought I was healthy, just partially deaf.
I had three surgeries between December and April – the aneurysm surgery literally three days before Christmas. I have two stents in my kidney and two in my heart and I have had two more procedures aside from those. Needless to say, its been a busy six months.
I thank God every day I get out of bed. I came upon this birthday and realized I truly didn’t think turning 48 was so bad, I was just grateful to be here. I have a dedicated team of specialists to check on me regularly and don’t mind when I think I am wonder woman and I end up in the ER they just remind me that I am not who I was last summer, this is the new me, just at a different pace.