We were a pretty normal, middle class American family. We had married a little late in life, as I was 32 and my wife was 28. About one year later, we were expecting our first child, and we're both working for the same, large information technology company. We had also purchased our first home and managed to save a small nest egg.

I had always been a really healthy person and never expected to have health problems. I was on three volleyball teams, scuba dived and loved roller blading. Suddenly, one day while playing in a volleyball tournament, I passed out. It was not for very long, just a few seconds. I blew it off and continued the tournament. I noticed that I was really tired the rest of the day, but felt better the next day. Six months later, I passed out again. This time, I went to the hospital, and they ran a bunch of tests on me but found nothing. Slowly, I started passing out more frequently and also started feeling like I had the flu all of the time. The doctors could not find anything, and after many tests, the medical bills started mounting. Luckily, I had medical insurance through my employer and was able to keep up with the bills, although it was daily battle with the insurance company.

Finally, the doctors labeled me as having Neuro-Cardio-Genic-Syncope, which is a neurological problem in the brain where the heart and the brain get our of sync causing you to pass out temporarily. I was put on beta blockers and told that it was just a nuisance illness and that I need not call an ambulance when I pass out. I questioned this diagnosis, since when I passed out, I would have very painful burning in my stomach and become incredibly hot. I checked online and found other people with Neuro-Cardio-Genic-Syncope. None of these people had the same symptoms that I did. I reported this to my doctor who was very un-interested in my findings. I became convinced that this was not what I had.

Over time, I continued to pursue a correct diagnosis. I slowly become dis-enchanted with our medical system. I felt like the Seinfeld episode where Elaine gets a note in her chart and cannot find a doctor to treat her. Ultimately, I was labeled a hypochondriac by the doctors. At this point, I was passing out 5 times per day and was incredibly sick, while continuing to become weaker. At my low point, I was down to 145 pounds from 180 and carried an oxygen tank.

One early morning, I had an attack and passed out. I stopped breathing and went into a ventricular escape rhythm of 30. An ambulance was called and rushed me to the hospital, where I remained intubated for three days. My family was told that I would most likely be a vegetable. This was also a misdiagnosis, as the doctor had forgotten that they had me on a paralytic drug. Once I was taken off the paralytic, I had a miraculous recovery; of course, not before my family had gone through quite a bit of trauma.

The doctors were suddenly interested in my condition, since neither Neuro-Cardio-Genic-Syncope or Hypocondria could cause me to stop breathing or put me in a ventricular escape rhythm. I was rushed to Methodist Hospital in Indianapolis for an EP study and a heart catherization. The tests did not show anything conclusive, and the attending physician suggested implanting a pacemaker. After the pacemaker surgery was complete, I was given jello, and I immediately had another attack. The attending physician shrugged his shoulders and wanted me released. We could not believe it! Where would I go? He suggested Mayo. How would I get there? I was passing out 5 times per day and was extremely sick. How could we drive over 400 miles to get there? There was no way that we could fly there on a commercial flight, since they could not land fast enough to save me, if I went into another ventricular escape rhythm.

My wife, being a truly miraculous person, was able to arrange an air ambulance to fly me to Mayo. We were told that this flight would cost around $15,000. After arriving at Mayo, we were horrified to find the same blank stares from the doctors and no diagnosis. We had truly wasted our time coming here, and now we were 400 miles from home. The hospital, once again, released me with no regard to my condition.

We did not know where to turn or how to get home. I placed a distraught call to my direct manager of the company I worked for to let him know that I would not be back for some time. I explained the situation, and unbelievably, he told me to stay where I was and that he would find a way to get me home. After a few hours, he was able to round up a few EMT’s that he knew and rented a van to come and rescue us. I do not know how I can ever repay this action. The next day my manager and his two EMT volunteers escorted me home.

Upon arriving home, we were horrified to find that over $150,000 in medical bills had beaten us home! No diagnosis. No Hope.

We were totally disgusted with hospitals and doctors at this point and I had resolved myself to just accept my fate and die. We started planning everything from the funeral to making video tapes for my daughter to view in later years. I felt awful leaving all of this debt for my family to manage and forced myself to get off short-term disability and return to work. (Little Known Fact: Once you enter long term disability your company health insurance is cancelled.) I felt like a zombie and was totally unable to function at work, but my co-workers felt sorry for me and helped me fake it. Several times I passed out at work. I could always feel the attacks coming so I would either go to a back lab where I had a few friends that would watch me and only call an ambulance, if I quit responding or lay down in the janitors closet and hope for the best. During this time, through the wonder of globalization, my wife lost her job to Mexico, and my job was not looking so good. My life insurance was cancelled because my medical folder was too thick for the insurance company to handle. We were still battling with the medical insurance company over our bills and were struggling to keep our heads above water. Our food bill had also grown to over $1000.00 per month, since I had to use special flours, soups and allergy free foods. We were shocked that we could go from middle class wage earners to poverty in just one year, and there were no safety nets in place to stop our free fall.

Most middle class people think that there are safety nets in place to protect them from poverty and sickness. In reality, we are all one bad car accident away from being in the poor house. Having a chronic illness, especially an undiagnosed one, will turn your world upside down. Good friends disappoint you, distant friends rescue you, instituions that you beleive in let you down and others that you thought could care less about you lend a much needed helping hand.

During this time, my sister attended a biology conference and was able to talk to one of the professors about my case. He suggested that we see a friend of his that ran an allergy clinic in Fort Wayne, Indiana. He said that this doctor just made people better.

I did not want to surmount any more medical bills, but my sister was persistent and we finally we went to this allergist.

The trip to the doctors office was somewhat harrowing, since my pace maker was having issues and sustaining my heart rate at 100 beats per minute even sitting perfectly still. We made several diversions to hospital routes and were a little late for the appointment. This doctor seemed caring and suggested that I have a skin prick test done for allergies. We had brought up the possibility of anaphalaxis several times to the previous doctors, but were dismissed. The tests came back 10’s for beef, eggs, soy and milk. The doctor explained that allergies, if no delt with right away, are like fires that continue to grow. He diagnosed that I was actually having anaphalaxis this entire time. He suggested that I avoid these foods to see if I improved.

We were very skeptical. How could food allergies cause such huge problems? Well, he was completely right. I avoided those foods and did not pass out again, but I continued to feel like I had the flu. Another year went by and we kept playing with my diet thinking that we had just not stumbled upon the correct food yet, when suddenly the phone rang. It was the allergist from Ft. Wayne. He said that he was discussing my case with a friend from the National Institute of Health, and he wanted to run a specialized test on me. He was sure it would be negative, but would like to do it anyway. First of all, we were shocked to find that a doctor was still thinking of me after a year, let alone acting on his thoughts and calling me. We agreed to the test, and it came back positive for Systemic Mastocytosis. This is a blood cancer that affects about 20,000 people worldwide. There really is no treatment or cure for this disease.

Today, I am still suffering with this disease. I am much more stable, but still have the flu like symptoms and bone pain that plague people with this illness. Through alot of hard work, we have been able to eliminate our medical bills and are starting to make progress again. I feel like we have learned a lot about our medical system, our government, and our friends, as well as society through this experience. We are continually striving to make changes where we can.

We hope that this website is a step in the right direction!