Moving for Medical Care: Life & Debt in America

I moved across the country to live in a city that had the appropriate medical care for Diaphragmatic Endometriosis. Not only was Atlanta the place with the best trained and experienced surgeons for my recurring collapsed lung, but residents of the state are eligible to receive financial assistance.

Before Atlanta, I lived in Phoenix. I was seen by well-meaning medical professionals who did not have the training or experience to properly remove the Endometriosis that was causing my lung to collapse. I was told by my Pulmonologist to stay on birth control indefinitely, and that would ward off future doom.

His plan failed when 6 months of continuous birth control couldn’t stop 2 holes from appearing in my right lung, a lung that — as viewed in a CT Scan — was just hanging on. The Pulmonologist at this time was nowhere in sight. That is, he was leading a team to work with CoVid patients on ventilators.

This was the moment when I felt an urgency to be near the experts in Atlanta. For several months I weighed the options: local ‘help’ at no cost, or the long-distance treatment that I truly needed — at heavy expense. In Atlanta, the hospital cost was approximately $115,000. Surgery fees from the specialist was discounted for me at an additional $6,000. Everything was out-of-network.

My generation is shackled with student loan debt. I have more than I care to admit, and it leaves me in a humbling place where I’m not able to take on any more debt. There was absolutely no room for the financial burden my health presented. The only solution I could imagine was becoming a Georgia state resident and applying for financial assistance.

Together with an Endometriosis advocate and friend, we raised $30,000 for the move and initial surgery costs, a budget to also cover expenses before and after surgery. People gave generously, and essentially saved my life by making this transition and expert care possible.

Because we had community support, my husband and I moved cross-country. Thanks to our new residency status, I applied for financial assistance with the hospital. It was granted within one week.

The surgery came and went, but I still received medical bills in the mail. Every time I saw a bill, my heart stopped. Radiology, Pathology, Thoracic Surgeon and Hospital fees just came pouring in. I saw the final costs and felt nothing but despair.

Fortunately, these bills are in the process of being rescinded — with the submission of my proof of financial assistance. But, in a world where even the holiday season doesn’t have a care for massive medical bills, I feared that I’d personally be stuck with the price of my life.

Some people might have $150,000 for medical care. Most people don’t. The greater problem of course is that the surgery I needed was not covered by insurance. It’s true also that there is a Mayo Clinic in Phoenix with an Endometriosis Specialist. I was advised to seek their local help, but Mayo rejected my insurance.

My choice was always to flounder in Phoenix, or to give up our home and start again in Atlanta — with my health. This was a high-risk, high-reward venture. I am grateful for all the donors who helped me with the cost to make this happen, and grateful for Northside Hospital’s financial assistance in Atlanta. But I grieve for a country that cannot figure out Socialized Healthcare, as many great countries offer — from the UK to Japan to Australia.

Your great Mayo Clinic is only useful for the privileged — those with acceptable insurance plans. And that is America’s truth.

Endo Survivor, Bonus Mom, Writer and Filmmaker