Medical Mystery: Finding a Team
Finding the right mix of providers and expertise for chronic illness management is important, although not always easy. Rare or complex conditions add to the challenge, and living in a rural setting can also limit access to specialized care.
My health situation is complex and for now, we reside in a rural setting.
Since my diagnosis of sarcoidosis, I have traveled to five different centers to find the right team to help manage my long-term care. While I am grateful for the ability to travel, it has taken a toll personally and financially.
Within the last few years, my medical mystery of finding the right mix of providers was solved at two Denver centers; National Jewish Health (NJH) and the GI Team at UCHealth. The care I’ve received fits my lifestyle. At other places, I was a case number grouped into treatment options based on test results. My symptoms and impacts on my quality of life were not always given equal weight compared to test scores and how I “should” feel.
However, that has not been my experience at NJH or UCHealth. Both places have cared for me as an individual. They have taken time to consider my lifestyle and share my desire to remain active as a partner, parent, and in the outdoors running, mountain biking, and skiing.
I trusted advice from NJH providers and had a pacemaker implanted last year, which has improved every aspect of my life. Their knowledge of sarcoidosis is extensive, and the ability for providers there to work as a collaborative team is what sets them apart.
At UCHealth, I’ve had providers think creatively and take proactive steps to find the best approach to monitor and address my GI challenges (even after my colectomy). And after 30+ years as a T1 diabetic, I’ve finally met the right dietitian. She’s comprehensive, knowledgable, and willing to help me find ways to balance realistic food strategies with diabetes and an ostomy. Not only that, she also had an ostomy, so it was an immediate connection and a sense of empathy that I hadn't experienced before.
How did I get to this point?
Self advocacy.
As patients, we deserve to be cared for in a style and manner that fits our lifestyle and goals. I’ve cold called hospital centers, asked detailed questions, and challenged opinions.
It’s exhausting, expensive, and overwhelming. But, I deserve the type of care that I’m receiving, and it should not be this difficult for people across the country to find the same.
