yours, tiramisu

some lessons from my experience with the American healthcare system

About two years ago, I was diagnosed with a very rare, one-in-a-million autoimmune disease in which my immune system attacks my kidneys. Very little is known about it, but in all likelihood without treatment my kidneys would fail within a few years. Getting treatment has led me on a long, ongoing journey with more than ten different doctors from hospitals across multiple states. Along the way, I've seen quite a few sides of the medical system and made a few takeaways.

There are good doctors and there are bad doctors.

The difference between them is night and day. Read reviews online. In my experience, patient testimonials are rarely wrong, and the quality of your doctor can play a huge factor in your quality of life. One of my former nephrologists responded to all my messages promptly and always took the initiative to send me write-ups explaining my lab results as soon as they came in. Even if she didn't always have the (right) answers for my questions, she made me feel extremely looked after and always went above and beyond to try to give me the best care. I've also had a neurologist who seemed like he couldn't care less about me. He showed up to my appointments late and totally unprepared and never paid attention to what I said. I found myself thinking that if I died under his care, he would probably just ask his front desk to bill my insurance for the trouble. Not only did the neurologist give me far poorer care, but I also found myself dreading interactions and avoiding him, which I'm sure would have had been problematic in the long run. (Thankfully, I found a new doctor.)

Prestige isn't everything.

I am currently a patient of one of the best nephrologists at arguably the top hospital in the entire country, and my experience there has been subpar at best. My doctor is impossible to get ahold of and stubbornly out of touch, making my life harder in many ways for no good reason other than for profit. I've experienced far better care at smaller institutions. While a medical institution's prestige is generally correlated with better outcomes, it isn't an end-all-be-all.

Nobody is responsible for your condition but yourself, so take charge.

Because my condition was so difficult to diagnose, I saw many specialists who all were baffled as to what I had. Often times I found myself in limbo when moving between doctors, a no-man's-land where nobody was really in charge of my care. It was all too easy to get discouraged after seeing doctor after doctor with no progress, lost in red tape or scheduling purgatory, and forget about or give up on getting treatment, but luckily for me my parents made sure we always kept going. If it weren't for them, I think I would have fallen behind a long time ago. There were many days I wanted to quit, to give up on calling and getting put on hold for hours, flying to different states, undergoing painful procedures, and disputing insurance bills, but I'm glad that I didn't.

Ask if things are possible, even if they aren't explicitly presented to you.

This is my mom's whole modus operandi. Can we do this MRI at a different facility to save money? Why did we get billed for this? Can we get our prescriptions refilled at a different frequency? I've never been one to question things like this (it's scary, not to mention often embarrassing), but my mom has showed me just how powerful questioning things can be, if you have the courage and tenacity to do it properly. Her creativity and dogged refusal to take no for an answer often makes me redden with secondhand embarrassment, but it has saved us countless dollars and hours in wasted procedures.