“It definitely improved my quality of life quite a bit because I was stuck in bed, and now I can actually have a life.”
I’m Maia Stock and I have a form of Dysautonomia called POTS. Dysautonomia is an autonomic nerve system problem, so it affects your nervous system. Blood will go away from your heart, but then it pools in your legs and feet and it won’t come back to your heart. Your heart rate speeds up trying to get the blood to come back, and because you’re not getting enough blood in your head you start to get a bunch of symptoms and you can pass out and faint.
For 6 months I had a bunch of symptoms like dizziness, fatigue, chest pain, fast heart rate, that kind of stuff. My worst symptoms were the fatigue and dizziness. Every time you stood up you either fainted or felt like you were going to and you just had no energy and constant headaches and migraines.
When I was 14 I was diagnosed with POTS by Dr. Richer at the Stollery hospital using a tilt-table test. It measures your heart rate and blood pressure from laying to standing. When I got diagnosed by Dr. Richer it was scary but also good because then you have a diagnosis and you know it’s real and not all in your head. First he recommended lifestyle changes like increasing your salt intake, exercise, and drinking more water, but that didn’t do much, so he added in medications.
It had been a few years before I started any trials, and I had just been stuck in bed all day and couldn’t really do anything and I’d left school because I couldn’t handle it. Then Dr. Richer suggested a clinical trial that involved going and getting Albumin once a week at the hospital. Albumin is a blood product and it helps retain fluids in your body, and I get that once a week every week at the hospital through IV. When Dr. Richer first suggested Albumin, he explained all the risks, what it was, and how it might benefit me. So I wasn’t scared going into it or anything and I was treated very well at the hospital every week. The only worry I had going in was that it just wouldn’t help me in any way. About 3 to 4 weeks in I started noticing benefits.
I really enjoy seeing Dr. Richer. He’s never stopped looking for new options and trying to help me get better. He’s someone I enjoy seeing; even though he’s a doctor, he’s still really nice to go to. The nurses that I see every week at the hospital, they’re really kind and nice and they get you whatever you need and help you even though you’re stuck hooked up to an IV for 3 hours.
I think clinical research is still important to try even if they’re still in the beginning stages. Even if nothing comes out of it you’re still looking into new options and gaining information about the illness. I still get symptoms, but they’re definitely less severe now after the Albumin. It definitely improved my quality of life quite a bit, because I was stuck in bed, and now I can actually have a life.