Johan Persyn - Dec 18, 2011 - Public
M Monica originally shared this post:
How The American Medical System Almost Killed Me
Just a heads up: This post is very long, shocking, and personal. This is your warning.
I keep getting questions about why I'm in a wheelchair, why I have lupus, and I have never fully addressed them; so here you go: a complete explanation. It's a bit long, but if you think it's long to read it, imagine how long it was for me to live it.
From The Beginning:
When I was 15 years old, in 1995, I was diagnosed with systemic lupus. Lupus is a disease in which the immune system malfunctions, becomes confused, and begins attacking the body instead of doing what it's supposed to do, which is to attack infections and viruses. When lupus flares, the immune system can choose to attack almost anything in the body. My immune system first targeted my blood system. When I was 17, I was hospitalized for 3 months with a severe case of hemolytic anemia, a condition in which the body destroys its own red blood cells. After several months, they told my family that I was probably going to die.
The treatment was repeated blood transfusions and high dose corticosteroids as administered by IV. I made a slow recovery, but survived. When I was released from the hospital, I was not strong enough to return to high school full time, but did most of my work at home. I even applied to college. But I was turning 18 and was about to be dropped from my parent's insurance plan; they did not know how else to get me the medications I needed to survive. My parents tried to arrange a marriage with an older man who had health coverage and a good income. They told me I would not survive if I did not marry him.
I was determined to complete college. I refused to marry. However, my first semester of college, I was hospitalized again with pulmonary embolism, a blood clot in my lungs. I wasn't able to breathe well and I was in severe pain. The recuperation process was slow and painful. My relatives again pressured me to marry. I gave in. The pulmonary embolism had illustrated their point. Marriage for health insurance is a much more common practice than is suspected in the United States. Many severely ill people marry (or stay married) because without health insurance or medication, they would die. The process of applying for Medicaid can take months, or even years. If you are severely ill, often you don't survive. I got married when I was a teenager to someone I did not love because I was told I had no other choice. And perhaps I did not; I look back and I'm not sure what else I could have done.
I became extremely depressed as a result of the arranged marriage. It is horrible to be married to someone you do not love. I was able to get the drugs I needed, but my hospitalizations continued through the next 7 years. In late 2006, I decided to leave. It was difficult; he was violent. And manipulative. Every time I thought about leaving, he pointed out to me that due to America's healthcare system, I was unlikely to survive more than a few years if I left. I reached the point where I did not care. Freedom was worth more to me than survival.
Marriage should not be the main thing that healthcare access is dependent on. But this is our system; health coverage is structured around two things: where you work and who you are married to.
When I left, I decided to pretend I was well so I could get a job and get my own health insurance. I moved to Colorado, and got a job as a receptionist. I never told my coworkers how sick I was, but eventually I couldn't hide my complications. Several times I got staph infections in my arms (and once in my blood stream) which were bad enough that I required surgery. During one hospitalization, they considered amputating my right arm. In the end they were able to save it after 5 days of IV antibiotics. During the winters, I get pneumonia almost every single year. Last year it took me 3 months to get rid of it. My immune system is suppressed so that the lupus doesn't flare, but this means that I catch everything I come into contact with. It is likely I will get pneumonia again this year. My immunoglobulin levels are so low that I need to start receiving IV infusions of the IGA fluid in order to help prevent getting sick. That means, essentially, that my immune system is so impared that a flu or pneumonia shot will not work on me. I will need to get these IV infusions every month for the rest of my life.
During the year I attempted to work, from August of 2008 till September 2009, I was hospitalized 7 times. I was a temp; I had no benefits, and the company I worked for would simply get another temp to replace me when I went into the hospital. I had several TIAs (mini-strokes) during this time. But I disguised the symptoms and kept working to try and afford medicine. I was still on my ex-husband's insurance, but the copays for the drugs I needed cost $17,000 a year. I made just $17,200 at my job. As I began to run out of money, I started rationing my medication. I started living on the cheapest foods I could find to survive; rice and Gatorade. Lack of proper nutrition further damaged my body. And then eventually I ran out of money to pay my rent.
I had no car. I was dependent on public transportation. This was risky; I developed a condition in which I began to pass out when I stood up or walked for long periods of time. Several times this happened on a bus; I would be sitting and riding the bus, and suddenly, I'd pass out. The first time it happened, I woke up slumped forward, with my head hitting the seat in front of me. I'd be awake and aware, but not physically able to move for 10-15 minutes. This has since been diagnosed by my neurologist as neurocardiogenic syncopy. It's basically a miscommunication between my brain and my heart.
Then I went half blind. On a Saturday morning, May 2, 2009, I woke up and I could no longer see out of my left eye. While I'd slept that night, I'd had a huge central retinal vein occlusion. My doctor admitted me to the hospital and they did chemotherapy to try and control my immune system.
The vision loss is now unfortunately permanent; I am told by the retinal specialist that I may lose the sight in the other eye at any time. Usually I do not think about the possibility of going fully blind; I'd rather not think about it.
Last year, the divorce with my ex-husband was finalized. I lost insurance coverage as a result. I applied for disability and Medicaid immediately afterward, but I went into the hospital 3 times in the 3 months immediately following. I had dozens of pulmonary embolisms in my lungs. The good thing about this is that it resulted in Medicaid getting sped up for me. Normally it takes longer than 3 months, but because I had been hospitalized in the ICU, the hospital put pressure on the government help get me Medicaid faster than normal. Unfortunately I had to almost die for this to happen. I was costing them thousands and thousands of dollars for each day I stayed in the ICU.
I am now able to get the medications I need. But I'm dependent on Medicaid for survival. If it is cut and the medications I need are no longer available, I will have more strokes, pulmonary embolisms, and I could go into a coma due to adrenal crisis. My adrenal glands have atrophied after being on prednisone for years.
I dealt, and still deal with pain from arthritis, fibromyalgia, nerve pain, and pain from lupus. Many of the things that make one type of pain better unfortunately make another type of pain worse.
However, I try and hide it. If you see me here on Google plus, in hangouts (live video chat), you will probably notice most of the time I'm sitting or lying down, logging in from bed or a recliner. On a normal, average day, my pain is about a 7 on a scale of 1-10. When the pain is worse, I usually don't hang out. On those days I'm just trying to cope.
Here's The Summary
I have been extremely lucky to survive as long as I have. Most of the things I have been through should have killed me; it has been like dodging bullets.
I recently got engaged to a supportive man who is very kind and helpful, but I cannot marry him. If I did, I would lose Medicaid. If I was on his insurance plan, he would not be able to afford the medications I need to survive. He'd go medically bankrupt within a few months, and I'd end up risking my life again. So we are just engaged and will remain that way until the healthcare system changes.
A question people commonly ask me is: "Are you going to be all right?"
The best answer I can give you is: I'll try. Everything I've done since I was 15 years old was with the end goal of survival in mind. The best thing you can do to help me survive is advocate for the government not to cut Medicaid. That would help more people like me survive. But the odds are not in my favor. The system wore me down. I don't have much strength left. And if I do die; don't feel too bad; despite the pain, I've enjoyed my life. Perhaps that's all we can ask of life in the end.
We need a long term solution in the form of a single-payer healthcare system. We need it very badly. The health insurance companies and drug manufacturers conspire to squeeze the maximum amount of profit out of the system: and in cases like mine, they don't care if you die in the process. I found this out when an insurance company, United Healthcare, tried to force me out of the hospital right after I did the chemotherapy in 2009. I'd been hospitalized several days, and apparently they felt this exceeded the limit I was entitled to because of the diagnosis my rheumatologist had admitted me under, even though I was not well enough to leave. First the insurance company went to the doctors and tried to get them to discharge me from the hospital; when my doctors refused, saying that would be dangerous, a nurse from the insurance company then called my cell phone. She told me I was well enough to leave the hospital, and threatened not to cover the cost of the stay if I didn't leave. I was scared of medical bankruptcy. I attempted to leave, and passed out in the process. My heart rate dipped dangerously low, so I was rehospitalized in the cardiac unit. The hospital eventually called the insurance company and told them they would sue them on my behalf if they did not stop trying to intimidate me into leaving before I was recovered.
This is what happens with companies that are after the bottom line: profit. Dollars are what matter. Lives are secondary when profits are the goal.
My medicines would not be that expensive if the drug companies and insurance companies were better regulated; but they are not. Right now, the system only profits if, when you are chronically sick, you are dropped from their insurance, or you die. The American healthcare system exists to bankrupt and exploit the most vulnerable, who, lack the tools or strength to fight back.
By the way, if you see me on hangout's video chat, I don't usually want to discuss my healthcare problems. That's why I wrote this post. I come on Google Plus so I can forget about it. Hangouts and the interaction I get with people has changed my life. For years I have gone in and out of the hospital and felt horribly lonely. Hangouts are a fantastic tool for people with a severe disability. Now I get to interact with people around the world. It's amazing. The Google Hangout Team is to be commended for creating a life-changing tool which revolutionizes the lives of the disabled.
And thank you, btw, for reading this post. It's hard to condense 15 years into several paragraphs. People like me usually don't get the chance to share their stories because when their condition gets as severe as mine, they've usually dead by now. I, however, by luck or chance, am still alive. This my testimony as to the cost of that survival.
(Picture attached is my hospitalization when I went fully blind in my left eye, in 2009. A friend has brought me crab for dinner as hospital food is notoriously bad.)
