By: Nicole G., Lee County
In 2015 I went to the Emergency Room at Cape Coral Hospital. I’d been extremely sick for about two years. I had no idea what was wrong. My symptoms became more progressive so my husband took me to the hospital. When I got there they told me that I had a bowl obstruction and infection. I’d lost about 100 pounds because I couldn’t eat. I was in the hospital for a week the first time and a week the second time I went in. They did an exploratory surgery and found that my bowels were inflamed. I had a consult with a Gastro Intestinal (GI) doctor and the surgeon which led to a major roadblock. The Surgeon was sure that I had Crones Disease. He and I discussed my long-term symptoms and he was clear that was the issue. The GI specialist disagreed. He said that I was not the typical Crones patient because I did not fit the age category. Crones patients are typically teenagers or 40 and older. At the time I was 39. When I asked the GI specialist what he thought I had, he said he didn’t know. So, I left the hospital without a diagnosis. This was detrimental to my health because no doctor would treat me without a clear diagnosis.
At the time I did not have health insurance. I worked part time and my job did not offer health insurance. I could not qualify for subsidies through the Marketplace because I didn’t make enough money. I was able to enroll in a health coverage program through Lee Memorial Health System in Lee County. Through a partnership with our United Way, the program helps people with low income access health care. When I came into the Emergency Room they were aware that I would need continual care and could not afford it. They operate on a sliding scale. I was able to see my Primary doctor for other health issues, but he was clear that he could not prescribe medication for Crones. I even called local clinics and specialists to see if I could get a doctor to see me pro bono, but I could not get any help.
In 2017, I began bleeding rectally and went back to the hospital. At that time the Health System program had added GI specialists to their network. I was able to see a GI Specialist and be properly diagnosed. I immediately started treatment for Crones. The Health Program made it affordable to treat and monitor my condition. The program covered my colonoscopy, endoscopy, and surgery which cost $65,000.
As part of the Health System program I had to agree to look for other resources. I ended up getting in touch with Johnson and Johnson, the makers of Remicade, one of my medications. They have a charity care program that offers patients’ assistance with the cost of medications. With my disease, I’m not able to absorb medication regularly. So, I need access to medications that are not taken orally. I have to take one of my medications through IV infusion. Every six weeks I have to go to a regional cancer treatment center in Ft. Myers to receive the infusion. The cost is $10,000 for the medication and $1,000 for the services. It keeps my Crones under control.
Recently I got to a point where I had a hard time working, I’m a property manager for a community. It’s aged and requires a lot of physical work and maintenance. I applied for Medicaid three different times. On the third attempt I was approved. It’s upsetting because, when you fall in between the gaps like I do, you’re on your own. It’s so unbelievable. There are eight different types of Medicaid. I asked for help several times, but nobody would clue me in on what type of Medicaid I actually needed. So, I learned by trial and error. People don’t realize that there are answers out there. They need somebody to direct them, for sure. When I tell people about the Health System program run by the County, they don’t believe me. They’ve been told so many times that they don’t qualify for help so they don’t believe any help exists. I could not accept that there were no answers. I’m still young and could not accept that this was going to be my life.
In February 2018 I was diagnosed with Systemic Lupus, Sclerderma, Rheumatoid Arthritis, Polymyositis, and Raynaud’s Syndrome. They called it Mixed Connective Tissue disease. It took me three months to get into see a Rheumatologist and between two and three months to see a Cardiologist. When I first started feeling bad, I changed diet, thinking that would solve my problems. When that didn’t work, I changed out my pots and pans and drove myself crazy trying to figure it out. I have a family history of autoimmune diseases. Lupus was very big in my family, so my diagnosis made sense. My Mom has Graves’ disease. My Grandmother had ulcers. I watched them both suffer for years while trying to get doctors to take them seriously. I guess I shunned away from going to the doctor because I didn’t want them to tell me it was in my head too.
It’s a difficult journey, even though I’m several years into it. The doctors I have now through Medicaid are very helpful. It’s tough waiting months at a time for appointments. The medications help me to keep most of my symptoms under control, and I have been feeling much better lately.