Guest guest Posted August 1, 2008 Report Share Posted August 1, 2008 Hi Sandy, Oh god what some journeys we have.... So hard to see outside the walls of our own at times. Being in lovely sunny Qld w/ absolutely the most wonderfullest fantastical health system in the world.... (sorry, I’ve just had loggerheads w/ same, yet again....). There are some fantastic people in it, but the system....!!!! LOL and words can’t put in print!!! And Jain Patel gets business class airfares and hotel accommodation for ?8 deaths in his surgery???? Ohhh please! ...... have been wondering quite a while, missing you on the airwaves, how you were, hoping t’was cos you’d had your op and was recuperating. So so sorry to hear you’re enduring such an awful situation for so long.....really does feel like if you need serious medical attention – leave Queensland. I think of you in my ‘prayers’, someone with all you do for others should at least be deserving of better, and my sincere hope is it is soon, real soon, Our hearts are with you sister, joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Hi Sandy, I’ve seen several posts from you, they do seem to be coming thru. So sorry you’re in such a bad way. When u wrote to me you were slated for your op soon.......still not happening yet? ‘cures’ do sometimes seem worse than the condition...scary. How do you manage to travel to Brisbane & sit thru committees when you’re so unwell? I just can’t function anymore to do that kind of thing & I don’t have all the other hernia etc probs you have - you have awesome willpower! I’ve had bronch since young, dx nearly 40 yrs ago (widespread, full blown inoperable by age 18), and mostly drs don’t want to listen - was told last year to go find another specialist if I wasn’t happy with his treatment regime.... And he’s swaps things around all the time, one visit tells me one thing, next, another... If I ask questions it’s still like I’m doing something unacceptable ( btw there is no-one else to go to here... The only other specialist is one I ditched after he neglected to provide treatment for 5 yrs apart from 1 hospitalisation...he’d even written in his report I was well after a visit because I wasn’t...). Bronch’s inherent variability seems to be really the main problem... It can be such a different experience depending on the individual, and then it changes as it progresses... Most of us need inhalers/nebs etc after a certain point – for many years keeping active was enough ‘physio’ for me, but since last decade general hlth dropped dramatically + arthritis limits activity etc so other forms of clearance are now needed...and meds. Without knowing what particular inhalers the lady was on, it’s hard to know if we’re using same/similar. I found it curious the family was told bronch was contagious..!!.. ALL research I’ve ever seen describes it as initiated by trauma to the lung eg whooping cough, pneumonia, smoke inhalation, aspiration etc... Unless the family were prone genetically to lung infx leading to chronic bronchitis then to bronch, I can’t see how it’s possibly contagious. Would add extra unnecessary stress on the family I’d imagine... A while ago I sent out a post saying I’d be interested to compile people’s stories into something I could then send to Lungnet etc etc, try raise awareness what bronch is like, but am not comfortable doing this without people’s express permission, only 1 or 2 people responded.... I’ve spoken w/ CF Foundation quite a bit, their funding started by families / patients lobbying for research; seems most foundations/trusts etc begin this way. When there’s enough pressure & vocalisation ‘out there’ that seems to be when it’s picked up by researchers & govt funding etc. I have spoken/written to Lungnet re paucity of inclusion of bronch in their website and newlsetter, so far have seen only 2 very short (a few lines) extremely basic ‘description’ of bronch, nothing that goes into any depth or deals w/ the plethora of s/e & other inflammatory disorders that tag along with it. If we want more research I’m beginning to feel it won’t happen unless initially instigated by those who need it – us. I’m prepared to put in the time compiling people’s experience w/ comparisons of info/research I can find. I’d need to search where it can be submitted, beyond Lungnet probably, so any suggestions welcome. Good luck Sandy, hope if you decide to go w/ surgery it alleviates the terrible situation you’ve been in so long... 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. " Quote Link to comment Share on other sites More sharing options...
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