Help Get Abram’s Groove Back!

Help get Abram to POTSCARE, a clinic treating Long COVID-induced POTS with research-backed science!

Dr. Driscoll developed the Driscoll theory during the decade she herself was debilitated with viral-induced POTS. What is POTS? Postural Orthostatic Tachycardia Syndrome is defined by a more than 50 beats per minute increase in heart rate within 10 min of standing, but it makes one feel horrible no matter what position their body is in, sitting, standing, or lying down. Imagine feeling horrible every moment of every day for 10 months.

Life is just returning to a post-COVID new normal for most of us, but not so for Abram. Overwhelming fatigue, dizziness, brain fog, muscle pain, heart palpitations, headaches and joint pain from Long Covid induced Postural Orthostatic Tachycardia Syndrome are keeping this formerly happy, healthy, energetic 15-year-old boy in bed and out of school almost every day…and it’s going on 10 months now. We have taken Abram to see every specialist imaginable. At the OHSU Long COVID clinic, we’ve seen infectious disease doctors, cardiologists, neurologists, pediatric physical therapists, occupational therapists and psychiatrists. They don’t have answers, they don’t even have theories as to why this is happening. Each specialist wants to look at one symptom: Can we lower his heart rate? Would this drug help him focus? Maybe drink more water to increase blood volume? We have tried it all. He just gets worse.

In summer of 2021, we tried daily hyperbaric oxygen therapy. It is expensive (not covered by insurance), takes time for both travel and treatment, and requires daily sessions to see an effect. While we felt we were seeing improvement, these drawbacks have made this treatment impossible to continue during the school year as Abram endeavors to use what little energy he has to complete school work from the couch at home.

Ask him what his favorite things to do are and he’ll answer ultimate frisbee, riding my bike, backpacking, or sailing. Notice a pattern? As a family, we love to be outside boating, hiking, swimming and enjoying nature. Now our boy can’t walk for 10 minutes without needing to sit down, let alone 10 miles carrying a pack.

The effort it takes to get up and eat breakfast can leave him laid out on the couch for the next 2 hours. Our days have become a blur of questions focused on pacing Abram’s day, trying to balance his need to complete school work, get a small bit of seated physical movement to keep his body from wasting away, consume 3 liters of water, and try to find some joy and laughter amidst the pain and frustration of having a body and mind that’s not working as it used to.

Months of research (Abram’s sister would like her mom to stop talking about Long COVID/POTS all the time) brought us to POTSCARE. Here is a team of doctors looking for and treating the root causes of viral-induced POTS. They evaluate medical history, blood work, MRI’s and family history to find and treat the underlying issues causing the POTS symptoms. Every doctor we’ve seen thus far only addressed symptoms, and nothing has worked. POTSCARE is an intensive two-month program not covered by insurance. March is our month to have Abram seen at POTSCARE. Initial treatment costs are upward of $10,000 for medical evaluation, optical nerve exams, blood work and MRI’s, and initial follow up. On an ongoing basis, Abram will need close monitoring by specialists for several years to come.

We feel daunted by what it takes to get this care, but feel so hopeful about what it could mean for our boy. Will you help us make it happen? Together we can get Abram seen by POTSCARE doctors and on the road to recovery!

Thank you for any help you can give, and for sharing this with others!