My Personal Healthcare Story

A picture of me in hospital.  I have shared this story on the site the white house set up and I will share it here now.

I have experienced both healthcare worlds because I started out with very good healthcare which over 10 years degraded to pretty good healthcare insurance until lost it because GA has some of the most backward COBRA laws.

I am a 46 year old man who has seen the heights and depths of our healthcare system over the years. My first major foray into the healthcare system was when I was diagnosed with Hodgkin’s Disease in the mid 90’s. My health insurance and health care was excellent. I survived after getting chemotherapy and radiation treatments for about 8 months. I paid half the premiums I eventually would at the end of my career due to disability, was covered 100% after co-pays and got most prescriptions for $5 and nothing more than $15. I only had trouble getting the insurance company to pay one bill. Unfortunately I still had to take unpaid time of work and quickly went through my 401k for the first time.

Almost 10 years later I had a more serious healthcare crisis. I contracted pneumonia and had chest pains. After being under diagnosed initially because they failed to diagnose my stage IV heart failure, I was rushed to the ER and literally given hours to live. My heart was down to 5-10% ejection fraction, my lungs, kidneys, liver and just about every major organ was failing. They put me in the ICU for three days and then moved me to the cardiac ward. They first treated my pneumonia and I had up to seven specialists working on my case at the time. I still had decent insurance but now I had to pay 20% of my bill, my premiums were twice as high and I had to pay $20-$45 for each of my seven prescriptions. Two days after my admission the hospital pestered my poor wife for what was like a retainer. No doctor took ownership of my case and they did successfully treat my pneumonia and implanted a stint because I had cellular plaque in one of the arteries feeding my heart. They still had not arrived at a coherent diagnosis and basically sent me home to die.

After a week at home I had to go back the ER again with the same heart failure symptoms and ejection fraction.  I finally had a cardiologist that cared about me case and he had his partner implant an ICD (despite his objections) so I would not die of sudden death which is the major cause of death for people with severe heart failue.   I was put on a very expensive new IV medication that boosted my adrenaline and finally enabled me to become clinically stable.  By the end of my two month stays I actually lost almost 60 pounds in water weight due to edema because my kidneys stopped functioning weeks before I entered the hospital.  At peek my ejection fraction was almost 30% but drifted down to 10-15% when I was taken off the new drug.  Unfortunately I could not stay on the new IV medicine for too long because it would just destroy my heart.

My total bill was a staggering >$400,000 and I had to pay 20% of the bill which added to my other expenses wiped out my six figure 401k for a second time.  Even though I had to pay 80% on a $400K bill the insurance company ended up negotiating their payment to a little less than $200K.  Actually I was not even supposed to have this information but my case manager with the insurance company was an extremely nice person.  I still had bills in excess of six figures from other sources mostly from in home equipment like a home hospital bed.  I ended up paying the copay on that equipment and the equipment company had said that my insurance had paid it off, however after I lost my insurance the medical supply company had the nerve to come back to me and ask for the difference between what they charged the insurance company and the “self pay” price of the equipment.  After years of negotiating with the medical supply company my wife finally negotiated a small payoff amount.

After six month “long term” disability was up my employer fired me because I “failed” to return to work because I was totally disabled.  After two years being on COBRA I lost my healthcare insurance and half my income because I’m still fighting for Social Security Disability (in this case my private disability insurer accepted my disability before the government).

I do not see the doctor nearly as much as I should and there is no help on the way until some form of pubic health insurance is available to me.  My disability payment is too high for me to qualify for Medicaid.  I’m in constant pain because of my heart but cannot afford a pain specialist or the medication.  I am on seven medications which cost about $350/month.

The ironic part is I needed an ICD replacement late in 2008 because my heart was getting near stage IV heart failure again. Thanks to my wonderful cardiologist and my amazing wife’s pleas to the hospital I was given charity status. My doctor visits, surgery, ICD device and hospital visit where all donated. Now I would rather pay for my own healthcare insurance and healthcare instead of having everyone pay more for a broken system.  That’s the not so hidden cost all that right wingers just do not comprehend which makes our healthcare system the most costly healthcare sytem in the world.

Now I’m the infamous “self pay” so I’m treated like a second class citizen when going to the doctor. My pain specialist dropped me outright even though I have chronic heart pain from heart failure and foot pain from chemo. My cardiologist almost has to have me show up for appointments incognito so his partners do not know he is still caring for me.

The fact is you can do everything right in life and still fall through the gaping holes in America’s inadequate safety net.  I paid well over $225,000 into the most expensive healthcare system system in the world only to have it leave me permanently disabled.  I did everything right to achieve the American dream.  I went to college and graduated with a post graduate degree. I worked in corporate America for over 20 years and have several world wide patents that still make the companies I worked for revenue.  I bought a home half the cost the real estate people wanted me to buy and I own both my cars.  I gave up credit cards 10 years ago.  But I would still have to give up my home if my health goes worse again   I have already paid for the down payment of someone elses American dream.  In my world greedy private healthcare CEOs and lobbyists destroyed my American dream.  Now when I need help there is none to be had.  I am already three years past my expiration date and I cannot get adequate healthcare.  I will never give up but the system has given up on me.  Not to mention that Social Security Disability is administered by the states and GA has a three year backlog just waiting for me to die.

We need public healthcare available to all.