We left off Part 1, with K still recovering from an illness that nearly killed her and ruined her credit but didn't ruin her spirit. What happened next?
Before going further, I ought to note is that K is not and never was estranged from her family. She and they were in frequent contact. They assisted her financially to the best of their abilities and often came to assist her during her bouts of illness. She consistently chose not to return to her hometown, which lacked business opportunities and where the climate worsened her symptoms.
More Diagnostic Tests
With no further savings and having recuperated from the worst phase of her illness in January 2012, K returned to building her business, saving funds for a rainy day and devoting time to recovering her own health. She even purchased new equipment for her business. Matters seemed to be looking up.
By the summer of 2012, she was quite ill again and she and I were together a great deal. I noticed that her thinking became distorted when she was at her sickest. She had tremendous headaches and became convinced that the air pressure of a second floor room (as opposed to one on the first floor) made her headaches more unbearable. I was very concerned about her ability to manage her own care. She didn't have a primary care physician due to her lack of insurance and lack of funds. Whatever care she received was what she determined at her own initiative.
Since she hadn't gotten a diagnosis for her illness in 2011, K scraped, saved and got a roommate to save up for series of diagnostic tests. She thought she had Crohn's Disease, an auto-immune reaction characterized by inflammatory bowel disease. In summer 2012, she had a series of diagnostic tests at an Atlanta gastroenterologist, which she self-funded at the cost of several thousand dollars. Despite her continuing illness and the myriad of symptoms she was experiencing, the tests came back negative for Crohn's or other inflammatory bowel diseases.
I can't tell you how much I came to admire, appreciate and love K. I admired her determination to heal her own body. I admired her crazy, ridiculous optimism when she was feeling well and even when she wasn't. I admired how she turned on the charm for people because she preferred they not see how sick she was. I came to believe in her ability to heal herself more and more. I saw her intuitive knowledge of other people's bodies. She straightened out my leg that had been twisted from a water skiing accident twenty-five years earlier. I never expected it to be straight again. I almost believed that she could heal herself, her abilities were so strong.
By the end of 2012, she felt a lot better. She was so much better that people who met her didn't realize how sick she had been and how difficult was the path to a full recovery.
Leaving Atlanta for Sunnier Climes
In January 2013, K decided to leave the subtropical South for the warmer, drier climes of SoCal. It wasn't a hard move. She had already sold most of her belongings. There wasn't a lot to pack. The California climate agreed with her. She started feeling even better. She got busy developing a new client base in a new region of the country. All seemed to be well. I visited her in her new home. We drank wine, hiked, went to the beach and I was thrilled to see her happy, healthy and busy.
Then, right around Thanksgiving in 2014, K and I were chatting on the phone and she alluded to some very troubling symptoms. I said I was coming to California immediately.
The Relapse; Now K Has Insurance
When I arrived on the Saturday after Thanksgiving, she met me at the door and told me this was likely to be the best she would feel for the day. Little did I know how very, very ill she would become. I have never seen a person so sick. She had so many symptoms--bloody stools, boils, swollen, painful, twisted joints--her left foot curled under on its own volition like the Chinese girls used to bind their feet--headaches and blurred vision. It was a cascade of symptoms each seeming more painful and debilitating than the others. Nothing that I did or she did for herself could make her more comfortable. Sleep was impossible. She suffered more than any human I have ever seen.
K had moved recently. This turned out to be of tremendous significance. She had purchased insurance, a "silver plan," bought through the State of California health insurance exchange. Even though she now had insurance, she had not yet been able to find a primary care physician in the area she now lived. She had begun a serious search for a new physician prior to my arrival. We decided this was the first priority to attend to. She and I spent almost all of Monday attempting to locate a physician to see her without success.
After many attempts to reach K's insurance company on Monday, we finally did reach the company on Tuesday and were given the names of approved primary care physicians in the area K now lived. When we called their offices, we found that all of the doctors recommended by the insurance company had closed their practices or relocated. One doctor appeared to have lost her/his license to practice medicine.
When we attempted to re-contact the insurance company, their phone wait lines were so long, all calls were dropped. Shortly thereafter, their website crashed.
The Good Samaritan Doctor
As the result of a personal relationship K had with a medical resident, she was able to gain an appointment for consultation by a rheumatology specialist who agreed to see her Wednesday, more than two weeks after K had begun to search for a physician. The doctor further agreed to accept a significantly reduced fee paid by K since she did not accept the silver insurance plan K had purchased. After consulting with K for some 45 minutes, the doctor advised K to go to UCLA Medical emergency room immediately for tests and admission to UCLA Medical.
The First Hospital
The doctor was as good as her word. UCLA Medical's ER team had been alerted and K was immediately whisked into an examination room. Nurses drew blood, took vital signs, administered morphine and planned an admission. While K was still in tremendous pain, she visibly relaxed. She even asked me to get her some food from outside the hospital. We talked and laughed while we ate and planned for her finally receiving the care she so desperately needed.
After a couple of hours, K grew concerned. She had had a lot of experiences with hospitals. Things did not seem to be going well. Her instincts were better than my own. Her insurance company, moribund for three days, had sprung into action at the point it might have been forced to pay for her care. It denied coverage for admission to UCLA. A hospital administrator came to tell us that the insurer was requiring that K be transferred to another hospital, WH Hospital. The insurer would pay for the ambulance to take her there. K sobbed uncontrollably and refused the transfer.
The administrator left. She returned some 45 minutes later with a form for K to sign. The form said that K refused to transfer to PT Medical Center. We pointed out we had never heard of that place, nor had anyone earlier suggested that K be transferred to PT Medical Center. They had only told her she was to go to WH Hospital. The administrator shrugged and apologized. It was 11:30 pm. K hadn't slept more than a few hours in days. She was on morphine and still in pain. She refused to sign the discharge form or to accept a transfer to another hospital.
It was only later that I realized that the Good Samaritan doctor knew that she was working against the clock in dealing with the insurer. If she could have gotten K admitted to UCLA prior to the insurer becoming actively involved, K may have gotten treatment at the hospital. K was triaged, not because of her illness (although she was critically ill), but in order to get a diagnosis and admission prior to the insurance company prohibiting the same. The specialist doctor could likely have prevailed over a hospital administrator, but she could not prevail against the insurer and hospital administration together.
K and I left the hospital near midnight feeling more dejected than I remember feeling otherwise in my life.
The California Department of Managed Health Care
Although we were both exhausted, K was in too much pain to sleep and I was too overwrought. At 3:00 am I began to draft an appeal letter, an Expedited Grievance, to the insurer. I sent it to them by 8 am Thursday and copied the California Department of Managed Health Care (DMHC).
Over the next several days, I was to have many conversations, emails and phone calls with the DMHC, the administrative branch set up to monitor and enforce the insurance contracts sold in California. The DMHC staff always took my calls. They even gave me a direct dial number so I could skip the long voice prompts. They were invariably polite and professional. In the end, they could not do one damn thing whatsoever to change the course of the treatment K received at the hands of her insurance company and the hospitals she ended up in.
The Moral of Part 2 of the Story
So what is the moral of Part 2 of the story? The moral of Part 2 is twofold. One, health insurance is not health care. Even if insured, you still may not find a primary care doctor or a specialist to treat you. Two, you might be worse off than before because you're no longer just dealing with hospital administrators. Your own insurance company may actively work to keep a hospital or doctor from treating you.