Help Meg live with POTS

My daughter, Meg, is 17. Until last spring she was a vibrant and active teenager. She did competition cheer and dance, she played lacrosse, she went to school and had a part-time job. The picture above is from her Prom in May. Now, in her senior year, she’s weak, fatigued, short of breath, and in pain. She doesn’t have the strength to open a soda bottle and can hardly get out of bed some days. After being referred to doctor after doctor in our area and having test after test done, she was finally referred to Mayo Clinic.

Meg has again been to multiple doctors and had multiple tests at Mayo but finally we have a diagnosis. It’s called Postural Orthostatic Tachycardia Syndrome or POTS. It’s a dysfunction of the autonomic nervous system which controls our involuntary actions, including breathing, heart rate, blood pressure, digestion, and smooth muscle control. The nurse explained it this way: your furnace isn’t working properly so you call a technician to fix it. When he gets there he says your furnace is working fine. The problem is your thermostat is broken and needs to be replaced. POTS is similar in that Meg’s thermostat to her involuntary actions isn’t working properly but it can’t just be replaced. There’s no cure but POTS can it be managed with medication, exercise, and permanent life style changes that will allow her to live with the chronic pain and fatigue. The Pediatric Pain Rehabilitation Program will provide Meg with the tools necessary to make those changes. Meg is registered to begin the Program on February 25, 2015.

Our problem is that Meg’s insurance won’t cover the cost of the pain rehabilitation program even though the pulmonologist considers it medically necessary. The cost is $38,000 and then there are additional costs of temporary living expenses.

From Meg’s point of view:

This really sucks. I’m tired of being sick. I’m ready to get on with my life; back to my friends; my job; and yes, even school. I’m trying really hard not to feel sorry for myself because that doesn’t help anyway. The worst part is that we had to give away our dog, Remi. We’ve been away from home for so long and will be again. Boarding is expensive and not fair to her. She was my best cuddle buddy and made me smile even when I was having a bad day. Thanks for listening. Meg
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Organizer

Leonard Burke 
Organizer
Oviedo, FL
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