My Story...To be Continued


In the spring of 1997, I was a 35 year old wife and mother of three wonderful daughters ages 11, 10 and 7. Up to that point I considered my life to be pretty uneventful. At that time I considered myself fairly physically fit; I exercised daily and loved doing outdoor work. My gardens were my pride and joy and the place where I released my stress.

In March of that year all that began to change for me. While at home working on my computer, I developed "out of the blue" a racing heart, chest pain, throat tightness and numbness in my left arm. Fearing a heart attack, I called 911. This was to be one of many trips to the ER that I would have. At the hospital I was checked for heart problems and told that what I had had was an anxiety attack. Leaving with a prescription for Ativan (a tranquilizer), I wondered about this diagnosis. I saw my primary care doctor the next afternoon who, also, prescribed Paxil.

Not knowing any better, I took those medications only hoping to feel better. After various medication changes, and also many changes in doctors, I decided that if this was my disease I should be in better hands. I went into Boston to a major hospital and decided to attack my anxiety head on. I joined a support group for people with panic attack. I received behavioral therapy and I saw a doctor who specialized in the dispensing of medication. Throughout all of this I continued to tell my doctor that I had terrible chest pain; not to mention the fact that I had gained 75 lbs in 8 months! I had a tight feeling at the breastbone and I had an uncontrollable cough. In the process of trying to confront my fears I had symptoms that were increasing them! My doctor always said "It's the anxiety... take the meds and try not to worry."

Finally in the summer of 1998, after going through all the processes of controlling my anxiety, I once again saw this doctor for the chest pain. I asked him if I could see a gastroenterologist and his reply was "It's only heartburn, take some Tagamet and you will be better." I insisted and had the barium swallow test which showed "mild reflux".

The chest pain was getting steadily worse and now I had such an uncomfortable feeling of fullness when I ate I could hardly stand it. Another visit to my doctor had him enraged. I wanted to have an endoscopy done. He told me that it was a very invasive procedure and that I could die from it! He would not give me a referral. I left his office in tears and I think that was the day that things started to turn around for me. I contacted a GI doctor myself and waited impatiently for my appointment. The fateful day came and the GI doctor immediately saw that I was in terrible pain. He sent me to an ENT who said that my vocal cords were burnt and enlarged. He ordered an endoscopy which showed gastritis, esophagitis and a hiatal hernia. Ph monitor and Ph motility testing showed SEVERE reflux extending to the aortic arch. I felt immediate justification.

Although I never had the typical symptoms of heartburn ( a burning feeling in the throat and chest) I did have the chest pain. The GI doctor said that had I been diagnosed 2 years earlier I would not be in this pain. The reason I do not feel "typical heartburn" is because the nerves in my esophagus are so damaged that I have no feeling in the area anymore.

After trials of GI meds, Prilosec, Prevacid, Axid, Zantac (600mgs.), Tagamet and Propulsid, I continue to have symptoms. I appear to be in the 3% of the population who cannot tolerate GI meds.

This experience has, also, not been without gains . I have found many friends in chat rooms and message boards that without their help I would not have come this far. This has become an invaluable tool in my understanding of this disease.

I continue to suffer, although I may see a dim light at the end of the tunnel. I am scheduled to see Dr. David Rattner, a GI surgeon, on Thursday, December 3rd. It looks as though surgery is my only hope to get back to leading a normal life again. Hopefully this spring I will be back to tending my garden and enjoying life once again.

This is not the end of my story. I will be back to let all of you know my outcome and I promise I will continue to support everyone who needs help with this disease.