Don't stop researching

[BookNut]

Research. Sometimes it seems like just reading the same things over and over...but sometimes. new avenue opens up. I just discovered that my asthma doc ( my favorite doc) does not have bronchiectasis listed as a diagnosis on my online chart. This made me think. The diagnosis came from my pulmonologist, whois in a different medical system. He told me about it almost as an aside....indicating it was mild and shouldn't cause me much trouble. I don't get a lot of help from him actually. He mostly treats people with end stage lung diseases, and I don't think he takes my issues very seriously.

Anyway...of course I researched the condition at the time...but the "mild" comment might have caused me to not pay as close attention as I should have. Well....the hospital giving me inhaled saline solution got me researching again. That is when I found out that saline inhalation is a common treatment for bronchiectasis. More detailed research revealed some very important things:

1. Non-Cystic Fibrosis Bronchiectasis (NCFB) results from a vicious cycle of increased mucus, which thickens and gets infected, causing shortness of breath and other exacerbations. This is exactly what has gone on with me for the last four years.

2. The damage is often caused gradually, by infections over many years. Let me see...I had bronchitis every Fall for at least 15 years.

3. One population that typically acquires bronchiectasis at a higher rate than other populations is .... wait for it.... women over 60 years old who have never smoked!! Gee...I came down with this nonsense 4 years ago when I was 63, and I have never smoked.

I am so looking forward to being off prednisone so i can tell if my new treatments are working and the improvement is not just the magic pred pills.

So far I have started some breathing exercises, increasing my use of my flutter valve, and am using my saline solution in my nebulizer. Fingers crossed!!

[me2]

Nice work. I look forward to your reality show "Booknut- The Patient Detective"

[annekat]

Nice work. I look forward to your reality show "Booknut- The Patient Detective"

Yeah, Jacquie! It is too bad we have to be our own detectives when docs are too preoccupied, don't have the time, whatever... but it must be a great feeling to actually be gaining some understanding by doing so, and feeling like some conclusions may actually be reached! What you have uncovered so far is very interesting!

[drz]

Good work Jacquie (aka Lifelong Booknut). I have had bronchitis four years in a row around the Holidays after onset of cold weather. The increase mucous often just seems part of Wegs and creates coughing for many of us and often sinus infections. It sounds like this bronchiectasis is just another one of the myriad of problems for which we we share an increased risk. It is too bad though that we have to become knowledgeable about all these aspects to inform our treating physicians about what might be going on with us. But then when you hear hoof beats you don't think of zebras. Right?

[Debbie C]

Way to go Jacquie.Are you going to share your findings with your asthma dr ? It is nice to know that after all these years you have suffered with this that there is finally light at the end of the tunnel and hopefully once of pred you'll even feel much better.

We need to start a new thread " ASK JACQUIE !! "

[annekat]

We need to start a new thread " ASK JACQUIE !! "

We knew there was more than one reason we need you to stay on the forum, WG or not!

[BookNut]

Yeah, Jacquie! It is too bad we have to be our own detectives when docs are too preoccupied, don't have the time, whatever... but it must be a great feeling to actually be gaining some understanding by doing so, and feeling like some conclusions may actually be reached! What you have uncovered so far is very interesting!

It sure does answer that nagging question - WHY did this come on so suddenly. Not sudden at all when you know what you are looking at! Not that there is a cure - but there are a few treatments I have not tried - and hopefully I can prevent it getting worse. Knowledge is power!

[BookNut]

Good work Jacquie (aka Lifelong Booknut). I have had bronchitis four years in a row around the Holidays after onset of cold weather. The increase mucous often just seems part of Wegs and creates coughing for many of us and often sinus infections. It sounds like this bronchiectasis is just another one of the myriad of problems for which we we share an increased risk. It is too bad though that we have to become knowledgeable about all these aspects to inform our treating physicians about what might be going on with us. But then when you hear hoof beats you don't think of zebras. Right?

Thanks dry! Have you had a recent CT scan? Might be worthwhile to see if this has developed. It used to be quite a common affliction prior to antibiotics. Now it is considered an "orphan" disease, although there has been an increase in interest the past few years. There are several non-medicine methods for keeping it from progressing - so it is well worth knowing about..."mild" or otherwise!

[BookNut]

Nice work. I look forward to your reality show "Booknut- The Patient Detective"

Thanks! In production as I type!

[BookNut]

Way to go Jacquie.Are you going to share your findings with your asthma dr ? It is nice to know that after all these years you have suffered with this that there is finally light at the end of the tunnel and hopefully once of pred you'll even feel much better.

We need to start a new thread " ASK JACQUIE !! "

Thanks Debra. It is good to keep those "Librarian-Spidey" skills sharp!! Those online medical charts certainly are a help for research detectives. I just wish that they would also contain CT results. I will have to ask about that. Maybe I am missing them somewhere.

Yes- I have already emailed my asthma doctor about my discovery. I told her I am very interested in hearing about natural and medical treatments for this - particularly if there is ANY way I can keep the mucus thinned down. My exacerbations are ALWAYS preceded by a thickening of mucus and a loss of my sense of smell. I sure want to prevent a worsening. 18 exacerbations, including 2 hospitalizations in 24 months is a bit extreme. Imagine if this was not a "mild" case of bronchiectasis!!