Bronchiectasis - I Can't Even Say It, How Can I Have It?????

My story must have begun when I was about 15 years old, but I never even knew it. I kept getting terrible pains in my chest, and I couldn't breathe. My mom took me to the doctor, and he said I just probably had some calcium deposits on my rib or something, and nothing was really wrong.

At 18, when I married, the pains continued, but I had long since chalked them up to "the rib problem". My husband and I didn't pay any attention anymore, but I still suffered. On every single medical form I filled out, throughout my lifetime, there was always the question, "Do you have chest pain?" I always answered, "YES."

No doctor ever asked me about them. Not one single doctor. You know, I don't think a single doctor ever read those forms, really, until recently. When you go to a doctor, they look at what you are there to see them for, and aren't really good at looking at your history.

In my case, it would have made all the difference. Maybe in your case, it would have, too.

I don't think my diagnostic course is much more unusual than what other people here have reported.  Doctors seem to miss it, looking for the usual things as we go through life - colds, pneumonia, flu, respiratory infections, bronchitis, etc.  They do the usual chest x-rays, which don't identify this disorder.  

For me, they would never have suspected bronchiectasis (I'm so new to this, I have to cheat to spell it!).  I am not a smoker.  I have never been a smoker.  There is no history of working around fumes, no lung injury, no inhalation of an object, no cancer treatments, no cystic fibrosis.  

My parents don't remember any really significant event where I was sick with anything as a child.  Just that one event with chest pain at 15.

The only thing we can guess - - - - -  I was raised in Niagara Falls, NY, and near Love Canal and Hyde Park, where there was chemical plant toxic waste sites.  That may be the explanation, but who would know at this point?


My diagnosis came as the result of a very strange turn of events.  I had a bout of tachycardia a couple of months ago.  So I went to the heart doctor, who could not find anything.  Then, a couple of weeks later, I went to the emergency room with severe chest pain.  Usually, with the chest pain I have, I just last through it, and have NEVER gone to even the doctor for it.  This time, I thought it was a heart attack, because it was so bad.

So the cardiologist did a heart CT, even though all of the other tests said my heart was fine (except for a valve problem - minor).  She couldn't explain the chest pain that I have, nearly all the time.  

And the CT scan of my heart?  Well, that came back FINE!!!  Only, while they were in the neighborhood....the doctor who read the heart CT says:

WAIT!!!!

This lady has a lung condition.

BRONCHIECTASIS.

What a surprise.  To everyone.


And it explained my weight loss, my pain, my history.



In a way, I'm glad to "know".  I'm sure that you fellow "broncs" understand that feeling.
Yet, there is this sense of - WHAT'S NEXT?????


I'm ready for what's next.  I'm here to try to help, to blog, to see what I can bring to this place.  Maybe as we find more broncs we can build a way to get enough information on this disorder that we can make our lives better.
zenforce zenforce
51-55, F
4 Responses May 6, 2012

I was diagnosed Jan.2014. I'm interested in knowing what treatments your dr. Recommends.

Sorry, my response posted before I had the chance to tell you that I'd like to keep in touch and see how you're doing. Also are there any websites that you have found that offer suggestions for people like us?

Your story sounds similar to mine. I too told every doctor that I had shortness of breath with exercise and cheat pain. An echocardiogram revealed a heart murmur that when large enough can cause these symptoms. So the advice was not to double my heart rate! Years later I developed lethargy and afternoon congestion. I went in for a physical and told the doctor that another doctor put me on meds for high BP but didn't know what caused it and I wanted to know why! So he did an EKG which revealed that my heart wasn't getting enough oxygen. So, he sent me for a stress test which was neg and finally to a pulmonary doctor. I grandly failed the pulmonary function test! Long story short (you can read my profile): Whooping Cough caused COPD caused Bronchiectasis caused the MAC bacterium and I'm now on 3 antibiotics for ONE YEAR!

I have posted my story on this web, 8-10-12. I was DX with this issue, in the mid 90's. If u have it and have it since 15 u are doing pretty well.. I have had soooo many infections, I just try dealing without always taking antibiotics. I have been told u eventually will get immuned to them so I try to work thru it, I take Ibeprofin for the awful feeling and achyness. I did get so ill in March and was put on antibiotic got to feeling some better but relapsed, my dr then put me on 2 antibiotics at the same time, I felt soooo good for about 4 mo, oh yeh, then in Aug here I am again, with that flu like symptom again. It really puts u down, not motivating well. I may be eligible for a study but u have to have bacteria in ur sputum so I don't want to clear anything up till I give my sputum sample, I have just finished a study for Bronc., now a new one to try, I will try anything to help me an other with this awful curse... Keep me osted on how u are doing...