People are always surprised to hear that I travel from Pennsylvania to Ohio for medical appointments. Whether it’s an hour-long flight or a seven-hour trip by car, they think it sounds like an inconvenience. But after months of seeing local physicians, I’ve come to appreciate how much easier my out-of-state sarcoidosis care is.
Filling my car’s tank to go to work ended for me in mid-March. Since resuming medical care, I’m burning through gas like I’m still leaving my couch to earn a paycheck.
I’ve seen my pulmonologist, primary care physician, breast care specialist, orthopedist, and physical therapists. Many trips entailed multiple appointments, and all were at different locations. A line of specialists remains to be tackled, including the ophthalmologist for my sarcoidosis, which is over an hour’s drive away.
I went to the Cleveland Clinic two or three times per year before the pandemic. What initially drew me there in 2011 was the experience the physicians had with this rare disease. What kept me returning are the benefits of a multidisciplinary approach to treatment at one location. Crisscrossing Bucks County, Pennsylvania, for recent visits to the doctor and being left with a fuel gauge near empty has made me rethink local care.
For me, going to Ohio is worth the expense. All the specialists I need are in one place. Any bloodwork and diagnostic tests can be done on-site. With my cognitive issues, scripts that I can fill immediately get accomplished. Those that require me to call around and make appointments get tacked to the front of my fridge and forgotten for weeks or months.
Improved communication is another advantage of corralling care. Physicians don’t have to rely on my spotty memory for insight from others who are treating me. They have immediate access to my reports, scripts, and test results. That keeps my medical team from tripping over one another and ordering duplicate or unnecessary tests.
At home, my primary care provider is the catchall for all of my medical information and test results. In gathering reports for my initial trip to Cleveland, I saw that the level of detail physicians provide in them ranges widely. When my primary doctor has questions, she has to track down the physicians or consult with me — which, depending on my level of brain fog that day, may or may not be an exercise in futility.
The quality of my medical care is what matters most to me. In replacing the dwindling ranks of the gatekeepers of my health, I hope to assemble another great team under one roof at home, too. Last month, I found a wonderful OB-GYN that practices at the same hospital as my orthopedist. This week, I have an appointment with a gastroenterologist there, too. So, I’m off to a good start.
Brighter side: We all could use a break from bad news right now. So, I’ll be closing my columns with a roundup of positivity until we are able to say goodbye to masks, hug our loved ones, and leave our homes without fear.
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Crowd-free Oktoberfest: Samuel Adams and Auntie Anne’s Pretzels have partnered to offer a limited edition at-home Oktoberfest kit. The kits, which are being sold for $89 at GiveThemBeer.com, contain: a six-pack of beer, a DIY pretzel kit, four party hats, four lederhosen-style bottle coolers, four lederhosen suspenders, two glass steins, and a recipe book with Oktoberfest-inspired dishes. Available while supplies last.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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