Hello All.
I have read through quickly all of the posts. I will add my story and 2 cents worth.
Causes for possibly coming down with BE...
.1. Living life in all the enviroments we found ourselves in. One of my examples of the many possible enviorments: I taught school for a short time....meaning sick children and illnesses passed onto teacher, and as well not the "healthiest of building enviorments."
2. Possibly colds, bronchitis etc. etc. and or other so called "not to worry' small illness with lungs involved throughout life and all adding up in a cumulative way in our system.
3. Having asthma, allergies, flu, pneumonias, viruses that add up in a cumulative way in or system.
4. Living in a home with second had smoke or being a smoker.
5. Not know one is low in Vitamin D until it has affected one in different ways including the lungs.
6. Being a farmer or home gardner and dealing with soil, leaves, animal droppings, cleaning out bird houses etc. etc. (More women than men develop BE....I think there are many reasons why.....one possibly being DIFFERENCES in how we handle life's journey, life experiences and in general involvments)
7. Immune system weakened at different times throughout life and possibly causing a cumulative affect.
I think there are other possible things that we don't realize all add up in a cumulative way, however, some people develop BE early on and that could be due to extreme situations/environments....hard to know. I was going on 80 when finally diagnosed with having BE.
Now regarding doctors.
Long story short as soon as I was told via an XRay that said I had emphysema I on my own, (no suggestion by the primary doctor) made an appointment with a local pulmonologist who said "No you don't have emphysema you just have large lungs." Well, ignorant me I left it at that. Nearly a year later after losing 35 pounds and many visits to my PCP saying "something is wrong", he ordered the CScan, result BE. WE KNOW WHEN SOMETHING IS WRONG THEY JUST DON'T BELIEVE US TOO OFTEN, after all we don't PRACTICE MEDICINE. After the diagnosis I was on the internet day and night trying to get as much information as I could and looking for a reason of WHY etc.
After searching the internet, with next to no help from the local pulmonologist after being told I had BE. and knowing previously of NJH (Mother died of emphysema) I on my own made arrangements and went to NJH...glad I did that due to all the tests they did to allow a better understaning of my health and systems.
However, by the time I was in the offices of NJH I very much knew a lot of the things to do, thanks to the internet, (wedge pillow, foods etc.) that we need to do. I just didn't know about the nebulizing, vest, and Aerobika and did not fully understand all that, especially air way clearance, until I found MAYO CLINIC CONNECT after my visit to NJH.
Yes, Sue you are so right.....we need to be our best advocate and speak up time and time again...although it ain't an easy road at times for many reasons.
Sue..P.S. .......I did ask the BE specialist I see who is five hours away from my home if she knew of a local pulmonologist here that could work with us...she and I. It didn't go over very well. Reply: "I can't help all my patients find local pulmonologists." Must have been a trying day for her. I do like her and she knows her stuff!
Luckily I think I found a local pulmonologist after that reply via my eye doctor suggesting the one her Mother In Law had due to her having had BE. Lucky me, he said he would be very happy to work with us and that he had a patient or two involved with the same BE specialists. When you speak up to your doctors and they are personable you do get help....my eye doctor was also personable.
To All....keep posting, for it helps in so many ways....... including from keeping us from feeling alone and as well not letting us give up.
THANKS,
Barbara