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At my first visit with Penn Medicine’s Pulmonary Hypertension Center, I was visited by a research coordinator. Pulmonary Hypertension is a rare disease, so the pull of potential research subjects is small. I agreed to be placed on a list for future studies, and was enthusiastic about doing my part to assist in finding a cure, or at least in the meantime, finding better ways to treat and slow disease progression.
When people think of research/clinical studies, they mainly think of medication trials, but there is more to a disease than drugs. Since at the moment my medication plan is working, I participate in research that doesn’t involve medication.
A few days before this study, my research coordinator sent me an e-mail with all my instructions, including being sure to have nothing to eat or drink after midnight.
After settling into my room at Penn’s research center, the first order of business was paperwork. I signed, initialed, and dated lot of papers.
Next was vitals. Temperature, blood pressure, oxygen saturation, and pulse.
The main thing they are studying is the correlation between body fat and its effects on pulmonary hypertension. They measured my height, weight, waist and hip size. Since I was standing up I was asked to take a little stroll up and down the hallway to measure my walking ability.
Labs came next. Labs for me can be hit or miss. Sometimes it can be a real struggle, other times they are super easy. I’m happy this was a super easy draw. With multiple autoimmune disorders, I’m used to there being a lot of tubes. I wasn’t nervous by collection in the basket.
Labs completed, I was able to eat and drink. It was my favorite part of the study, coffee and snack time. I’d do the study just for the cookies.
Satiated, it was now time for my DEXA scan. Taking prednisone for my Lupus, I’m no stranger to DEXA scans. The hardest part is staying absolutely still for three minutes. I’m fidgety, but have had plenty of extra yoga/meditation time this past year, so laying still was easily accomplished.
When my research coordinator described the study, she mentioned that I would be given a balance test. Balance is not one of my talents. I imagined being asked to do all sorts of complicated yoga poses. Thankfully the test only comprised of standing still in easy positions.
The longest part of the study was the in-depth echocardiogram. The tech was friendly and super nice, but like all techs, had an unwavering poker face. Someone should have a poker tournament made up only of radiology techs. I always try to read their expressions. Am I dying? Am I doing great? There’s no tell whatsoever. The best part about the research study echo, the results are sent to my doctor and count as my yearly echo.
The final task was a CT scan. I had to get it done using a special CT scanner, so my research coordinator walked me to a different building. I enjoy a CT scan. It always makes me feel like I’m in a sci-fi movie.
All together, the study lasted half-a-day. As medical things go, it was fun. The whole team was kind and enthusiastic about their work. It made me feel encouraged to know that people care about improving the lives of those with chronic illnesses.
Living with multiple chronic illnesses can be daunting. Life can become a haze of doctors’ appointments, tests, medication changes, refills, insurance struggles, etc… Participating in a research study injects some positivity and hope. I look forward to doing more in future.
