I have been living with this syndrome for over 4 years now and I'm not getting better and feeling very frustrated with the cardiologist treating me, who by the way is the only specialist in my area that treats this "specific" condition. I was diagnosed in July of 2019 & it took until Nov. 2020 to get a referral for the doctor I have now due to 4 other cardiologists refusing to treat me based on it not being "their specialty",🙄 so my first appt was in May of 2021, (the most annoying thing about this "specialist" is he ONLY does video appts. So he's never even seen me in person, how ridiculous is that?) that was a long time to avoid standing because whenever I did, I became dizzy & my heart was pounding out of my chest & I couldn't breathe. I became very deconditioned during that time, even so the physical therapy was difficult but I did it, and they insisted on a mask which made my shortness of breath worse but I endured that too, but still could not get beyond 15mins walking on the treadmill, even at home after I left there, and was not stiffled by a mask. I hit a wall & just seem to not improve past a point & the meds only make me tired, they don't even stop the increase in my heartrate when I'm standing, so I'm starting to question if the fatigue they cause is worth it? I really feel there has to be more, so I have requested my primary doctor to get me a referral to the Mayo Clinic in Arizona for at least a consult, their Neurology dept handles these patients there so I'd like to see if they can help me.
There has to be another option, there is so much hopelessness in a condition where you feel you can only do things that you can complete in about 10mins & you don't want to go out cause if you end up having to stand too much & expend too much energy, you know whats gonna happen & you just don't want to burden anyone else, you just don't even want to leave the house cause you hate all the possibilities.. and bringing the damn walker so you have a place to sit down when you need it, cause you may have to if you don't get things done fast enough! Life is just not enjoyable anymore.
I can't help but think about my nursing career that was just ripped away from me like a thief taking candy from an old lady, just poof, woke up one day & gone can't stand up more then 10min & I'm dizzy, short of breath, BYE BYE ER NURSING CAREER 😥 and any nursing career cause you can't pass any hospital physical with those issues, which is my point with disability I'm battling right now. The fatigue is so intense I have trouble sitting up more then a couple hours a day & have to lay down most of the time so work is not really an option, life is not worth it if a better solution can't be found. Hopefully Mayo Clinic will be of some help cause this can't go on like this much longer.
Me telling my story below 👇😊
