Guest guest Posted March 11, 2004 Report Share Posted March 11, 2004 G'day Has anyone every come across a bronchiectasis patient that has written about what it is like to live with bronchiectasis and is prepared to share it with me. Is anyone aware of any books, journals, papers or publications written about bronchiectasis from the patients prospective? Is there anyone ‘out there’ that is prepared to discuss their everyday living experiences in the same manner and detail as I have done in my story “Living with Bronchiectasis” made available to the Chat Group about a month ago. Some may argue that my story is a bit much; my only defence is that I needed to write it; I needed to offload some of the ‘stuff’ that clutters up your head and the story is the result of many hours of soul searching. There was much agonising over whether or not I had the courage to make such personal details available to others. Many copies of my story have been sent out and a few people have replied with complements on how thorough I have been in writing it. Now that’s nice and I do appreciate it but that’s not what I want to hear. I would be very interested and I am prepared to listen to any bronchiectasis sufferer that wants to offload onto me the burdens that having bronchiectasis has placed upon them, that is the inconveniences it causes, what ‘hang ups’ does having bronchiectasis bring to them, how many times a day do they have to endure the inconvenience of postural drainage, has bronchiectasis effected their ability to work and earn a living or to participate in sport, does the air recirculated in air-conditioned environments cause them infections, how do they react to passive cigarette smoke, how, does them having the disease effects their love ones, etc. The Chat Group email has been very interesting and I’m intrigued and sympathetic to read about the many forms the disease takes and I’m overwhelmed by the apparent dedication of ‘Tina Hillier mum to ’. I would be very interested in how an Extra Special Chromosome both physically and mentally affects . The anguish that Tina deals with is hard to imagine and if being prepared to listen and share would help her in any way then I’ll put my hand up to volunteer. My fellow Bronch sufferers it is good to ‘offload’ so help me with this one. If you don’t want to talk about your ‘stuff’ through the Chat Group forum then ‘one to one’ is fine with me. My email address is mico@.... One aspect of the disease that seems to be apparent is the lack of male sufferers, boy that’s a worry. Us males need reinforcement of our masculinity and being the only male with bronchiectasis does not help. If there are any other blokes out there with this problem please let me know. Females instinctively deal with pain and suffering well but us blokes do not suffer pain and inconvenience easily, so girls encourage the blokes to talk about what bugs them about having bronchiectasis. Regards Rob Find local movie times and trailers on Yahoo! Movies. Quote Link to comment Share on other sites More sharing options...
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