How a complex care program is revolutionizing my healthcare

I was supposed to be preparing for an upcoming work trip to Austin, Texas. Instead, I was sitting in a hospital room, waiting for the doctor on call to look at the area around my gastrostomy tube (G-tube).

I’d spent the past several months in a nebulous state of health. A hospitalization in December had highlighted a whole host of underlying concerns, from a fatty liver to potential food allergies. On one hand, I felt like I was making progress: After years of asking questions, I was finally getting some answers. But I was exhausted all the same. It really, truly felt like it was one crisis after another.

So when the skin around my G-tube broke out in a rash, I had to laugh. Of course! Of course I would develop yet another skin condition days before leaving for the annual Cure SMA conference. I normally wouldn’t have paid it much mind — I have enough skin conditions to give most dermatologists a run for their money — but it was starting to affect the tube itself, so I decided to play it safe.

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The physician on call, Dr. Ladner, arrived and immediately set me at ease. He was easy to talk to and, more importantly, was familiar with SMA. As an adult living with a rare disease, it’s difficult to find knowledgeable providers. Gillette Children’s Specialty Healthcare in St. Paul, Minnesota, has been my saving grace in that respect, with a variety of providers all specializing in rare diseases like SMA.

I gave Dr. Ladner the whole story, starting with the hospitalization in December for metabolic acidosis. He even noted the litany of skin conditions I’ve struggled with for years. He was thorough in a way I haven’t associated with Western medicine since aging out of pediatric care. I left with a tentative diagnosis — a bacterial infection, otherwise known as cellulitis — and an antibiotic to get me through my trip to Texas.

As I was leaving, Dr. Ladner noted that my case seemed “complex” and offered to see me regularly as a patient. I had no idea how monumental his offer would end up being.

An introduction to complex care

I scheduled an intake with Dr. Ladner at the truly abhorrent time of 9 a.m. The appointment would last for two hours and consist of diagnostics and recording my medical history.

I had no idea what to expect going in, but Dr. Ladner was quick to explain his role in my care. As my “complex care coordinator,” he and his team would essentially coordinate my care. As part of the program, I would have access to a scheduling assistant to handle Gillette appointments as well as someone to assist with scheduling external referrals. I can email both people throughout the work week, meaning no more waiting on hold for hours at a time.

Dr. Ladner then went over my body from top to toe. We discussed everything from my allergies and persistent sinus issues to my various skin rashes. I left the appointment with a list of 10 referrals, none of which I had to follow up with on my own. Less than an hour after I left the clinic, I had a welcome email in my inbox with next steps and the contact details of my scheduling assistant.

Setting the bar high

The older I get, the harder it becomes to ignore the deficiencies of the U.S. healthcare system. My care is complex. There are so many moving parts that staying healthy is well and truly a full-time job. Prior authorizations, insurance denials, scheduling conflicts — just thinking about it gives me a headache. And I’m privileged in that I live within driving distance to a dozen clinics in and around the Twin Cities here in Minnesota. I can’t imagine what it would be like if I lived out of state.

I transitioned from pediatric care when I was 21, three years after I was supposed to. Since then, I’ve flitted between a half-dozen providers, none of whom I felt comfortable with. They weren’t familiar with SMA, nor were they willing to go the extra mile when it came to some of the more complex aspects of my care. It was frustrating, to say the least. I went from an incredibly personal, incredibly engaged care team to an overworked and understaffed industry with no real bandwidth for cases like mine.

I don’t blame my other doctors. They have done the best they could, and for that I am grateful. Still, it’s important to acknowledge where the industry has fallen short — and to ensure that people like me have the healthcare they need and deserve.

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Note: SMA News Today 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 SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.