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.
You’re story is heartbreaking and familiar. I guess that’s what brings us all together.
My husband and I were married in August of 1993 and I graduated from college in December of 1993. My husband had dropped out of college while I was in the second term of my junior year so that I could quit my job. At the time that I grad., my husband was managing a BBQ Rest. and I was immediately employed as the business manager for a large doctors office in a nearby city. I was not provided insurance at my office because the doctors I worked for considered their expertise the benefit. My husband’s employer was local (not a chain) so no insurance there either. At the time. this was okay with us for the most as we were healthy young adults with the future ahead us. We handled the finances of our medical needs without any financial problems. The only issues we were faced with were seven miscarriages.
In 1998, after we had given up, I became pregnant again. My son Henry was born on my thirtieth birthday a month early and by emergency c-section. At his two week check up we found out he had a heart defect. I was told to quit my job and stay home with my son because he would not survive a cold. After four years of shear panic and lots of prayers he was fine. I never went back to work though because I could not stand to put him in daycare, a world completely foreign to him.
Early last year, my husband began his own business and I signed on to help with Obama’s campaign. We still had no insurance, but we had hope that by the middle of this year that would change. My husband would also like to help the ten employees on his crew.
Business is great and I am so proud of my husband! This time last year we knew we would reach our goal by the middle of this year.
Then life happened. For the last couple of years, I was aware of symptoms of diabetes. There is a clinic in my area that charges on the sliding-fee scale. I made an appointment in the spring of 2007 to be tested. On the day of the appointment I was told to “Get my shit and get out of the office!” by the P.A. who was offened when I asked her not to be so snarky to me. I was kicked out of the only clinic I could afford before I got my fucking test for diabetes.
This past January, I watched our beloved POTUS’s inauguration from my hospital bed in M.I.C.U.. I was admitted to the hospital with an A1c score of 11.7(it goes to 12). I too, was hours away from dying.I weighed 98 lbs (I’m 5’6″) and was in really bad shape. While I was concerned that I might have Type 2, I’m Type 1 (insulin dependent.
Needless to say the bill for six days in M.I.C.U. well you know.
I am uber lucky because I get my supplies for aound $350 to $400 per month. I always tried to stay fit. I work out and eat mostly veggies and fruits. They want a diabetic to strive for an A1c of 6.5, I now have an A1c score of 5.1. This is a better score than the average person has yet I am denied coverage because I am diabetic.
My husband’s business is still doing well and we will be moving up to a brand new tax bracket this year. Saying that I would be more than happy to pay more in taxes for the benefit of my country.
Although my story is not as tragic or hearbreaking as yours, I wanted to share mine with you.
I hope you and your son are doing well. The system we have is just unconscionable. Making profits just to be a middle man and deliver our money to providers is pure blood money. I just can’t understand why everyone does not see that all insurers do is give us our own money back when we need it.
Best wishes for you and your family in the future.
KQuark, your story makes my blood boil.It’s stories like yours and my own, which is a walk in the park when compared to yours, that I wrote to the players in congress, who are doing everything in their power to kill health care reform.I was too angry to engage in politeness.Enough is enough!!
I wrote and faxed the following because I was not about to tolerate some inane reply via email.’Thank you for your response but you’re not a constituent, blah, blah, blah.”
Since 9/11/2001, 177,310 American people have DIED due to the lack of health care.
That is the same body count as 59 9/11s!!!
And you’re going on vacation, while you have the best health care paid by OUR tax dollars!!!!
Meanwhile, the insurance lobbies spend$1.4 million dollars per DAY buying the votes of the very people who should be working for US!!!Shameful and disgusting!!!
American Tax Payer
May we all live long enough to see the health insurance behemoth drowned in a bathtub!
KQ, even though it’s in unpleasant circumstances, nice to see your face.
What a harrowing and incredible series of events you’ve had to endure and have done so bravely and purposefully.
The scenario you’ve lived and are living is so fucking outrageous and I know you’re far from alone. I have to say that in the back of my mind is a worry that any day, like a bolt of lightning, something could happen to me or my family’s health and I will be in that same nightmare.
And what is even more disgusting is the game the GOP and the insurance industry is playing to keep this deteriorating situation in place. It’s all about distracting the public from reality with intentional lies about the horrors reform will bring so they won’t think about or listen to realities such as yours and many others.
Do the people buying into the bullshit believe they or their family could never have a serious medical condition? Do they think that if they tell their insurance company that they opposed health care reform, they’ll get payment for the treatment they need?
There is a huge disconnect here between reality and the bullshit of politics. It’s like the public has been set on fire and they’re being told by the GOP and the Health Industry that what they really should be worried about is the horror that reforming arson laws would have on them.
And many of them are buying into it! As I wrote in my recent post, one would have to be incredibly ignorant to accept someone else’s opinion that they are not on fire when they are engulfed in flames.
It’s very upsetting to think about all you’ve had to endure with keeping yourself alive, simultaneously having to lose your retirement money and at the same time having to battle the greed of the medical industry. You are a tough customer to take all that on and your wife sounds like one remarkable woman.
As always, all my best thoughts are with you. Your article and experience are powerful arguments for the cause and has made me even more determined to do what I can to press for the reform you and I and all of us so badly need.