What our docs tell us-

[Guest guest]

Hi ,

Aaahhh......welcome to the club of confusion from specialist / local doctor (GP in Aus-speak). I’ve only ever had 2 CT scans, the first in 05, then 08 (despite dx 18 yrs old, therefore am in pretty advanced stages by now), but was recently told risk of tumours was too high to use too frequently as a dx tool....

Now, I know there’s a whole of questions you have & sorry can’t be of much help... But one part you’re really talking my feelings lately. Last time in hospital, April (ie 2nd time within 2 mths) a lovely Indian doc mentioned that during his studies he’d noted that respiratory conditions are the least researched of all medical issues, said he couldn’t understand why - all forms of. (You may recall a paper I posted/link about a year ago I sent out, from 2 docs research showing bronch hadn’t been researched for past 40 yrs (most of my life with it).

Here, the major proportion of funding is for emphysema (mostly result of smoking) - bit grrrr when you have a condition no result of lifestyle, started way before you had ability to make any choices. Talking to my physio...(who, mercifully, has found a way to include giving me percussion prn...) & everything I can gather it seems that really so little is known. For so long I kept being told ‘oh, we use this now’, or, ‘we don’t do that now’... (drainage, percussion, etc)... Cos for emphysema constant heavy production of mucous isn’t an issue – nor infx. Bronch is a totally different to emphysema, totally diff strategies for managing it... Well, so far as I understand at this stage.

“ I'm still focused one day to make a huge difference for people suffering with Lung Diseases......I'm determined to speak to enough people in the know to find a treatment that works and changes the lifes of so many. “

You’re talking my language.... I’ve had this disease rob me of a career, even a stable work-life of any kind, of relationships, I realised by age 20 it would be foolish to have kids....already by then I realised there were too many times I couldn’t look after myself. One of the things that has recurred since about a decade ago is that – if I had to go thru all this, it’s made a pretty pointless life unless I can do something, contribute something so that others don’t have to suffer – not just the disease, but the ignorance of the medical fraternity.

I spent my 1st 20 yrs being told I was a ‘guinea pig’ - like it was something to be really proud of. Now, I’m just rather tired of having pins stuck in me by medics trying to ‘pin the tail on the donkey (me) blindfold’. If I could research this, if people on sites such as this are willing/able, I’d like to write something I could get published...where, * & ^%#@ knows!!! What do you think – is it a pipe dream? Can we do something ourselves about this awful lack of understanding of this condition??

I just wish a few docs/medics whatever would look at what people are asking, really need to know....maybe they’d get their feet on the ground. Do you think we could do it....anyone else ???

Happy breathing J

Joy

-- --

" Wealth is nothing, position is nothing, fame is nothing.

Who you become inside is everything.

What happens to you is not as important as how you react to what happens. "