There is hope, my story

I can remember having "breathing issues" since before I was 10. I don't have the best memory and can't remember if I told my parents or not but I can remember asking my father for money and going to the drug store around the corner to buy "Primatene mist" in hopes that it would help but hiding it from my parents. I remember the symptoms would come and go and don't remember any major "issues" until I was in my teens. I was never good at sports because I allways seemed short of breath and figured I was probably out of shape. I should mention that I grew up in the Virgin Islands with lots of fresh air and was in pretty decent shape so being overweight wasn't an issue. From my late teens it seems like my symptons would show up ever year of two, last a few weeks to a few months and then be gone again. This was anoying but not that hard to deal with. I moved to the states in my late teens and can remember my symptoms getting worse in my mid 20's when I was living in California. Instead of the symptoms coming and going they started suddenly and were 10 times worse then they were before. This started my dealing with any medical personal.

Like the rest of you I was unable to "complete" a breath. I never felt like I was getting enough air and was only able to take a deep breath every 10-15 breaths and then it was like ambroisia. I felt like I was close to passing out much of the time when it got real bad. Several time in the same week it scared me so much I finally went to the ER. The ER staff basicly took one look at me, told me I was having an asthma attack and gave me nebulizer treatments. The treatments really did nothing but the ER gave me a inhaler and sent me home. This happened several times over about a month and again the ER did the same exact thing. My breathing issue this time lasted probably close to six months when the symptoms left as quickly as they came. I hoped that they wouldn't return and went on with my life.

About this time I met my husband, got married and proceeded to have 3 children between the ages of 26 and 33. During this time the symptoms continued to come and go and while I tried to talk to my doctors about them everyone of them blew it off as either asthma or anxiety without ever doing any for of testing. I want to point out that anxiety wasn't remotly a possibility, I am one of those ones that don't panic until after the issue. I am allways the "rock" when everyone else is falling apart. About that time I decided that it haden't killed me yet so it wasn't likely to so I was just going to learn to live with it when I had the symptoms.

I divorced shortly after my last child was born. It was an amicable divorce and we still get along to this day with no animosity at all. It was about six years ago that the symptoms came and have never left. They would improve slightly but they never completly went away. About a year ago they started getting even worse. I am now unable to doing much physical activity without being completly out of breath. I went to the primary doctor I had been seeing to see it we could finally see what was causing this. He bluntly told me there was nothing wrong with me and then started telling me it was anxiety. He did run some blood tests which as far as I know showed nothing except that my thyroid levels were still out of wack. About three years ago I insisted he check my thyroid and low and behold it was above normal and put me on synthroid. At that point I had had it, I never want to see that idiot again. I was able to get a referal through another doctor that I was seeing for the lumps that were found in my breasts that turned out were benign as my primary would not refer me.

I managed to find a Pulmanologist near me and made an appointment. At my first appointment I knew this was going to be the turing point. This doctor actually sat and "talked" to me for over an hour, asking me all kinds of questions, his physical exam lasted less then 5 minutes. He then told me he wanted to run a bunch of tests including various blood tests, xrays, an upper GI, an echocardiogram and 2-3 different breathing tests. What these test show was VERY enlightening. The upper GI showed I do have a hiadal hernia and GERD, the xrays I'm unsure of but the breathing tests show some issues with I believe the large airways but I could be wrong there. We decided (the doc & I) that since I had been deeling with this for so long that we were going to take our time and make sure this was done right. At that point he put me on Pepcid AC to help with the reflux and wanted me back within the month. At the next visit I told him that the pepcid had made a bit of a difference about a week after I started it but it only made a difference when I wasn't exerting myself and about that time I came down with a very nasty cold with major congestion and my symptoms were back full force. He then changed the Pepcid to Prilosec and asked me to try an Albuterol inhaler to see if there was any difference. The inhaler has made absolutly no difference. He (the doc) also ordered a few more tests including another breathing test, more blood test and another set of chest xrays. I go back to see the doctor the end of this month and will hopefully discuss the hernia and GERD in more depth. I did find out that the GERD can definatly cause breathing problems. Basicly the stomach acids get into the lungs and creates issues which is where the antacids come in I think. I have been on the prilosec for almost two weeks now with minor improvements as long as I am not exerting myself.

Last week for the first time in my life I have meet someone else with the same "issues". Her problems were a bit worse then mine in that the stomach acids were even causing tooth decay and that she had a constant cough. She had a surgery a few years ago called "Nissen Fundalplication" which wraps the top of the stomach around the esophagus so that the acids can't get back into the esophagus. She said the surgery made a huge difference including her breathing. I hope to talk to her again soon and have passed this site onto her.

I am planning on posting regular updates here in hopes of helping others as I know how helpless and alone everyone here feels. I am new to blogging so please forgive how primitive this is, maybe I can do better in the future and if anyone has ideas on it I would be gratefull.

Casi

Where do I begin?

I have created this blog hoping to help others suffering from the same problem as I am. From when I was very young, under the age of 10 if I recall correctly I have suffered on and off from what I now know as "air hunger". Up until about 2 years ago I didn't even know what to call my symptoms or how to decribe them. Air hunger describes it perfectly. The feeling that you are never getting enough air or oxygen can be absolutly terrifing, many people relate this to panic attacks and for some people their air hunger symptoms do come from anxiety or panic attacks. What about the rest of us who know beyond a shadow of a doubt that this is NOT that?

In the next few days I am going to spend some time writing about how this began with me and what has been done through the years. I am happy to say that I have FINALLY found a doctor who actually believes me. After being told by EVERY other doctor I have tried to discuss this with that I was either making this up or that it was asthma I basicly just gave up and try to live with it. In other words I have been deeling with breathing problems for close to 30 years. It really is a wonder that I haven't given in to a panic attack yet.

I would very much love to hear from others with these symptoms. Up until this last week I have NEVER met anyone with the same issues, I have heard of them but never met anyone. The lady I met was for the most part describing me as she told me about herself. I hope to get more information from her and include here.

Casi