UCSF – Ride The Stride

I remember the doctor, a lovely, short plump lady, asking me if I got dizzy when I stood up. It hadn’t occurred to me that this wasn’t normal, I know, but it hadn’t. I was being seen at the Teen Clinic at UCSF as a requirement for the eating disorder program I was attending, where they would do a full medical assessment every week including vitals, UA’s, blood work and weigh ins. They were used to us, dispensing our paper gowns for weights and standing right outside the cracked bathroom door for our UA’s.

The eating disorder program was a step down PHP/IOP (out patient level of care) after I had resided in Oregon weight restoring (and sanity restoring, to some degree, too.)

The doctor gently held my back on the exam’s table as I swayed from blacking out. “I’m referring you to cardiology” she said gently.

I met with the cardiologist who was just across the hall, who to be honest, I hated right off the bat (though over the years I developed a soft spot for). The dreaded “you don’t look like you have an eating disorder” he said gruffly. It sent me spinning, only seeing red, feeling the heat crawl up my body and soon the verbal purge of “WHO DO YOU THINK YOU ARE AND WHAT KIND OF DOCTOR ARE YOU” slipped through my pursed lips, followed by a rush of tears.

He did orthostatics: supine blood pressure and heart rate followed by sitting blood pressure and heart rate concluded by standing blood pressure and heart rate. My vitals were conclusive- Postural Orthostatic Tachycardia Syndrome. A diagnostic criteria of a rise in heart rate of a minimum of 30bmp (though mine doubled from 60bpm to 120bpm.)

What is POTS?

Perhaps my approach was a bit rash. I left the office that day not knowing how much I actually accomplished.

It’s now been 6 years later and after trying a pharmacy of medications including but not limited to most beta blockers, Corlanor, midodrine, florienef, salt tabs, adderall and IV Saline infusions (2liters/4hours/2X a week) I’m still less than managed though some noticeable improvements.

“Wow, an AVM!!!” The vascular surgeon proclaimed as I sat in my emergency department room. “Look! Look!” She was obviously amused and slightly baffled, I lost her voice almist my racing thoughts. A what? “And you’ll need to be seen at UCSF immediately”. (As if that’s a thing). My something cool suddenly turned to something scary.

Ever since I was young I had excruciating left leg pain. Pediatricians and doctors wrote it off as growing pains, though the pain did not dissapaite when I stopped growing, in fact, it continued to worsen, though unsure if masked by a torn meniscus at age 12. However, lucky for me I guess the MRI that showed the tear when I was 12 also showed vascular abnormalities which sent me to UCSF’s vascular anomalies clinic when I was 13 to be studied by a good handful of doctors who still had little clue about the Venus malformation or what to do with it then, and was told to keep an eye on it.

Back to present day. We are not without hope.

2 1/2 years ago I went to the ER for what I thought was a DVT. My leg, about twice its normal size, had a pea shaped knot protruding from the crevice of the knee or the “poplitial fossa” area. I went in and they discovered the AVM through diagnostic imaging of an ultrasound, x-rays, and Ct-angiogram. Now I’m back under the supervision of outstanding doctors, and while unfortunately we are at a standstill with me being on Eloquis (there’s not much surgery wise to fix it we can do while I’m on it) I have hope we’re on the right track for me to lead a less painful life.

Tag: UCSF

You have POTS! (Postural Orthostatic Tachycardia Syndrome)

Arterial Venus Malformation…?

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