These stories come from the real people who live with a broken health care system. Some have health insurance and some do not. Many of these stories suggest potential solutions* that lead to quality, affordable health care we can count on. One thing we all agree on is that the we cannot trust the insurance industry to fix themselves. To learn more about what Health Care for America Now stands for read our Statement of Common Purpose.
We wanted to give you a chance to speak for yourself, in your own voice, about the need for Health Care for America Now. Do you have something to say? Tell us your story.
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Diane Maria
Leesburg, VA
Hi. My name is Diane Maria Bongiorni. I've had a congenital problem with my aortic heart valve that was diagnosed when I was 17 years old.
When I was 47, I was getting less then 50% of the blood flow I needed in my body to live. I started developing infections all throughout my body. I needed to have open heart surgery, but doctors couldn't operate with infection present.
I was working at a residential job, taking care of at-risk children. The non-profit had an HMO, but no disability insurance. I had to continue working, although I was very near death, doing physical work, lifting children, changing diapers, etc. My skin turned gray, and my hair and fingernails stopped growing. I felt it hard to think and concentrate, due to decreased blood flow to my brain. I was hospitalized frequently and in and out of the emergency room, dealing with one health crisis after another.
I could not go to my home state to stay with my family, nor could I stop working, because I needed the HMO for the heart surgery, and they wouldn't pay to have the procedure done in another area of the country.
I was so tired and fatigued that I would get off work and then sit in a chair and cry. I was passing out, and was not alowed to drive. I had my groceries delivered. I lived alone far from my family, and couldn't clean my apartment.
Finally, one day, my doctor said, "If you can't schedule this surgery soon, you're going to go to sleep one night and not wake up in the morning." I was put on a regime of 9 oral antibiotics, plus two bags a day of intervenous antibiotic. I had a port in my arm and sat at work each day giving myself an infusion. I schedule the surgery for June.
Because I received the apartment and a very modest pay, I was required to work 40 hours a week plus 60 additional hours per month, even after my cardiologist sent a letter saying that I could not physically work more than 40 hours per week. Because I received my lodging in exchange for my work, I met with the directresses of the non-profit to see what I could do for the period of my hospitalization and three-month recovery period. The two were on the phone on speaker with my supervisor present. When I asked what could be worked out so that I could stay there while not working, the ceo said to me, in the presence of the others, "I will put your stuff out on the sidewalk myself. We don't want a dead body on our hands, now do we Ann?"
Hysterical that I would become homeless on the eve of my heart surgery, I called my church for assistance. They asked someone in Maryland social services to intervene with the directress, and she denied having said I could not stay on while recuperating from the surgery.
I worked 40 hours a week plus 60 hours per month until the Thursday before my Tuesday heart surgery.
After the surgery, during which two tubes were put into my jugular vein because my other veins were collapsed, I was very ill and required two blood transfusions. One night the night nurse witheld my painkillers - three days after open heart surgery. I was moaning and crying, and sweated through the bed clothes and mattress, which had to be changed by the day shift. I am told these nurses steal this medication to take or to sell. After that, every time it was time for my painkiller I became extremely agitated and worried that they would not give it to me.
I was in a tiny room with an elderly lady who had a heart attack and died while I was there.
After five days in the hospital, the social worker came in and told me that my hmo would not pay for me to be in the hospital any longer, nor would they pay for a nursing home because, "I was under 50." I live alone and had no one to help me. My sternum had been cut in half and to move or be in a car caused excrutiating pain. I called my parents, and my sister, who had three very small chidren at the time, drove five hours to pick me up and the hospital and take me home. When I left the hospital, they would not give me any pain killers to take home, so I had to get up and walk into the CVS with my sister, and lean against the prescription counter while they filled the presecription for my pain killers. My mother watched my sister's three children for five days while my sister was with me, and then, I was on my own, ten days after open heart surgery. I felt it was unwise to go to stay with my family, because, if I required hospitalization while there, my HMO would not pay for it.
The surgery was successful. After my three month recuperation period, during which I could not lift anything or walk outside the building or drive, or raise my arms to wash my hair, my employer demanded I return to work or give up my apartment, and again required me to work 60 hours extra per month to keep my apartment, against my doctor's orders. They moved me out of the apartment I was living in without notice, and into a smaller apartment with less privacy. I suffered a terrible depression after the surgery and found it so hard to work so many hours with no rest or respite. I really felt sorry to have survived the surgery to have to endure this inhumane treatment in order to keep a roof over my head. My church paid for my hmo for the three months of my recuperation, during which I had no income at all. I cashed in all of my retirement funds, but still ran out of money. I frequently caught the flus and stomach flus the children brought into the facility in my weakened state.
Finally, after ten months of determined searching, I got a job and a place to stay in another state and left the non-profit. Three years after that job began, I was let go. Since that time, I have spent $426.00 a month on COBRA insurance while being unemployed and under-imployed. I still have not found a job with health insurance benefits. I have had to cash in all the retirement money and savings I had accumulated in those three years of employment (over $30,000) and will not be able to afford a place to live much longer.
I am 51 years old now, the spectre of being without health insurance, and the financial burden of paying for COBRA insurance, haunt me every day.
*Health Care for America Now is not responsible for the content of these stories. These stories are submitted by individuals in the online audience and have been edited in some cases. Health Care For America Now does not endorse any of the solutions or policy positions suggested in the content of these stories. Health Care for America Now is a coalition of organizations that agree to the Statement of Common Purpose.
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