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Advocating for Myself as I do for my Patients

Heather, age 33, Wisconsin

I am a wife, mother and Respiratory Therapist.  I work full-time three 12 hour shifts each week on my feet and on the go.  Our 3 amazing children, are ages: 11, 7 and 4.  As a healthcare provider, I always had an instinctual feeling something else was going on inside my body.  As a wife and mother, I never felt I was able to keep up to my perceived capability.  Thus, I spent a majority of my adulthood with so many unanswered questions— until now…

Every doctor relayed my symptoms back to anxiety/ depression, exercise-induced asthma, hormonal changes, “having too much on my plate”, “being a mom”, “working too much” etc.  Yet, years of heart rate data from smart devices (thank you Fitbit, Apple Watch even hospital and home pulseox) was ignored and invalidated because all functional labs were normal.

I felt like I was managing everything well.  I work hard, I love my job and family.  These were my reasons to get out of bed every day possible.  However, I still felt terrible— I used to live it up!

Most recently, a cardiologist looked over my history: including multiple ER visits receiving intravenous fluids for unexplained dehydration during my pregnancies and with seasonal viruses…. Concurrently, leading to pre-term labor/ hospitalization with my first (I remember telling my obstetrician the week before feeling palpitations/ heart racing after waking out of a dead sleep).  Followed by uncontrollable migraines, dizziness and fatigue with my second.  Lastly, severe nausea/ vomiting and fatigue with my third.

Continuing on, I wasn’t pregnant anymore and experienced these symptoms in waves— they would vary from day to day and month to month.  I always gravitated to the sitting position, because just standing still made me feel so weak— I’ve prided myself on my strength.  I felt like I ran a 5k after walking up a flight of stairs, breathless.  I would miss work, family functions and avoid most social gatherings.

After contracting COVID in November, my symptoms only became worse and more frequent.  I felt all the symptoms of each pregnancy and viral illness combined.  I would experience near-syncope every day upon standing up with my heart rate peaking in the 160s (almost 200 with exercise).  Additionally, unintentional weight-loss: 40 lbs in a few months!

It took the cardiologist a matter of minutes to look at me and put all the pieces together.  He was so sure and didn’t question any more irrelevant information.  Following a multitude of tests, it was confirmed I have suffered with dysautonomia: Postural Orthostatic Tachycardic Syndrome (POTS)— for at least 12 years.

Looking back, I wish I advocated for myself as much as I do my patients.  Listen to your body.

#standinguptopots

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