Case Two: A Patient’s Experience

By Shivani Jain

Graveson DC is a 30-year-old male was practicing with his band in the Big Easy, just going about his typical Sunday routine. Towards the end of their set, he noticed a funny feeling in his chest and was having trouble breathing. He figured he might have just exhausted himself at practice and didn’t think much of it. Later that night, however, he noticed his blood sugar was  ridiculously high which was unusual for him since he’s regimented about taking his insulin, having lived with Type 1 diabetes since he was 9. It wasn’t long until he was so sick that he was vomiting and now really struggling to breathe, barely able to take in even shallow breaths.

His wife had been trying to convince him to go to an urgent care to get checked out, but he wasn’t convinced he should, partly held back because they didn’t have great health insurance. As working artists, they couldn’t afford plans that would affordably allow for regular check-ups, specialist care, and urgent care visits. But, now he had no choice but to go to the ER in an ambulance in an intensely panicked hurry. He was suddenly worried that he was having a heart attack, and everything else became a blur.

Graveson spent 3 days in the ICU, mechanically ventilated and hooked up to monitors and lines. When he finally could breathe on his own and start eating again, things started to come back into focus. In discussions with his care team, he realized just how lucky he was to be alive given that he had just experienced a thyrotoxic crisis. He didn’t fit the average profile of someone who would be likely to go through this type of medical emergency, being that he considered himself pretty healthy in his early 30s. And, apart from his childhood diagnosis of diabetes, he had never really been sick.

Soon after leaving the hospital, he decided even if meant taking out more credit card debt, he was going to see a specialist. The endocrinologist was quickly able to diagnose him with Graves Disease, an autoimmune condition that leads to an overproductive thyroid gland. All of a sudden, many things started to fall into place and make sense: why he’d been losing so much weight over the past couple years despite not really trying, how he could never get cool (which, to be fair, was easy to brush off in South Louisiana), the constant hunger pangs and difficulty falling asleep. Over the past few months, he’d been restless and anxious, feelings that were spilling over into his marriage and personal relationships, never imagining even his psychosocial health had been impacted by this condition all the while.

The diagnosis had a profound impact on every layer of Graveson’s life, especially because it put him into crushing debt. His health insurance plan didn’t cover much, and he was now having to make numerous trips to multiple specialists and to get even more labs drawn regularly. There was a new layer of stress added to everything, and he was genuinely concerned about whether he would be in a position in the future to take care of himself. What if he one day got hit with a cancer diagnosis – what would happen then?

He ended up receiving bills from the ambulance, emergency room, two different sets of emergency physicians, among other hospital expenses. It all amounted to a staggering $34,000. Even after many hours spent on the phone with multiple administrators and patient advocates, the lowest he was able to reduce it to was $29,000. He was surprised by how much misinformation he was given and that there was so much ambiguity tied up in the process. He felt like 20 minutes of helpful conversation would only be set back by 1 hour of wasted time with an unhelpful administrator. This didn’t even cover his outpatient follow-up endocrinology appointments, more tests, and medications. Because he couldn’t afford to pay all the bills at once, he ended up on a payment plan with very low monthly payments.

It took him 6 years to get out of the hole his thyroid crisis had dug him into, but today he is grateful that he could get onto a Medicaid plan with the expansion of Medicaid in Louisiana and that he’s built up a great relationship with the same endocrinologist who diagnosed him and who also manages his diabetes now. He used to have to ration his insulin or skip meals to afford some of his medications. But, over the last several years between making steady income being self-employed and being on Medicaid, he’s been able to breathe a little easier.

Nonetheless, the event did erode his trust in the medical system. He doesn’t blame the frontline workers or any one person in the system but wonders what it will take to reduce costs and make health attainable for his nieces and others in the next generation. He still jams with his band and now spends some of his free time educating other artists about their options for health care and health insurance.

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