Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Hi Kay, Yep, have annoyed the blazes out of pulmonary team, GP, specialist about the vest....so far getting nowhere, haven’t heard of it, seems no interest to follow up. Now am on a pilot program for frequent hospital admission avoidance I have a case worker and after this exacerbation I will push for it some more.... Squeaky wheels and all that !!! Take care all, joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2009 Report Share Posted September 1, 2009 Hi Kay, Yep, have annoyed the blazes out of pulmonary team, GP, specialist about the vest....so far getting nowhere, haven’t heard of it, seems no interest to follow up. Now am on a pilot program for frequent hospital admission avoidance I have a case worker and after this exacerbation I will push for it some more.... Squeaky wheels and all that !!! Take care all, joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 I had thought that if you had printed material on The Vest to show your health team they couldn't play dumb on you! Hope you can print out some info and maybe a picture to take them. Looks like they are at least paying more attention to you nowadays... about TIME!! Kay Re: Vest Hi Kay,Yep, have annoyed the blazes out of pulmonary team, GP, specialist about the vest....so far getting nowhere, haven’t heard of it, seems no interest to follow up. Now am on a pilot program for frequent hospital admission avoidance I have a case worker and after this exacerbation I will push for it some more.... Squeaky wheels and all that !!!Take care all,joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 I had thought that if you had printed material on The Vest to show your health team they couldn't play dumb on you! Hope you can print out some info and maybe a picture to take them. Looks like they are at least paying more attention to you nowadays... about TIME!! Kay Re: Vest Hi Kay,Yep, have annoyed the blazes out of pulmonary team, GP, specialist about the vest....so far getting nowhere, haven’t heard of it, seems no interest to follow up. Now am on a pilot program for frequent hospital admission avoidance I have a case worker and after this exacerbation I will push for it some more.... Squeaky wheels and all that !!!Take care all,joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Wow I thought that most pulmunologists were aware of the Vest. It is such a remarkable piece of medical equipment. My Pulmonolgist was the one to reccomend it to me. They need to do some research on the vest. I can tell you that it has helped me avoid so many infections and having to be dependent on abx. I hope that you can get the chance to get a hold of one of these. You will be amazed at how much better you will feel. I wish you luck and hopefully success in aquiring one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Wow I thought that most pulmunologists were aware of the Vest. It is such a remarkable piece of medical equipment. My Pulmonolgist was the one to reccomend it to me. They need to do some research on the vest. I can tell you that it has helped me avoid so many infections and having to be dependent on abx. I hope that you can get the chance to get a hold of one of these. You will be amazed at how much better you will feel. I wish you luck and hopefully success in aquiring one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi kay, Yes I do live in Roseburg, and yes I can exercise but, at times it is difficult without having to stop for a few min to get some rest and catch my breath. Hope that you are doing well yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi kay, Yes I do live in Roseburg, and yes I can exercise but, at times it is difficult without having to stop for a few min to get some rest and catch my breath. Hope that you are doing well yourself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi Kay, Yes I wasn't having much luck with some of the pulmo docs. Untill I found Dr Bassam Hashim. He works at Mercy Hospital here in Roseburg And, he as the kids say these days is the Bomb! He was very through in his testing and explanations to me about my bronchiectasis. And was responsible in getting me my vest. Also, I would have never known the reason for waking up with headaches if I had not had a oximeter test done. From having this test done. I would have never known that I also suffer with sleep apnea. I stop breathing when I sleep. So now I sleep with oxygen which has stopped the not feeling rested at night and headaches. All thanks to Dr Hashim. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi kay, yes I think he once told me that he was from syria. He was once not allowed back into the United States after visting family due to him being of syrian descent. His patients signed a petiton to try and get our government to lift his ban. That really took some time. He was stuck in Syria, untill he got word that it was ok for him to return. His patients really had a hard time of it while he was out of the country me included, and I added my name to that petiton as well. Yes Oregon is very beautiful,we had some real scorchers back in july. Three or four days of temps over a hundered. One day it was 106. For me those days were awful. It made my breathing worse and I could not get comfortable even with fans going. I don't have an air conditioner and live in a apartment UPSTAIRS! Needless to say I prayed for cooler temperatures. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 2, 2009 Report Share Posted September 2, 2009 Hi kay, yes I think he once told me that he was from syria. He was once not allowed back into the United States after visting family due to him being of syrian descent. His patients signed a petiton to try and get our government to lift his ban. That really took some time. He was stuck in Syria, untill he got word that it was ok for him to return. His patients really had a hard time of it while he was out of the country me included, and I added my name to that petiton as well. Yes Oregon is very beautiful,we had some real scorchers back in july. Three or four days of temps over a hundered. One day it was 106. For me those days were awful. It made my breathing worse and I could not get comfortable even with fans going. I don't have an air conditioner and live in a apartment UPSTAIRS! Needless to say I prayed for cooler temperatures. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Hi Kay, They honestly don’t know of the Vest... As my GP said, we’re in frontier territory. Even in Oz terms we’re remote regional. I live on east coast in the top pointy bit of Australia – not right at the very top, but compared to distance from major cities of Melbourne and Sydney it may as well be on the moon!! A lovely tourist area (which makes some things expensive) and still lots nice places to go if you know where, without much expense, so am lucky in that respect. Also don’t have cold winters here which used to nearly kill me even as a kid...which is why I stay here even tho it makes getting medical/health services more difficult. Things are looking up tho, I’ve been able to stay home this exacerbation, have had physio 4 days last week, a couple of days the previous week and another tomorrow, and still avoided abx!!! If have to do the abx, will have ambulance transport to take me into hospital for PIC line & home same day, & neb Tobramycin as well as IV at home – no in-patient admission - & if do have to be admitted no more 20-30 hrs in ED hell waiting for a bed.... I almost cried with relief. Am still not feeling in the clear, but it’s so much more restful being home...and nice to check emails and see so many friends here...!! Time for me to go do some “fizzy” will have to catch up with other posts next time... Cheers all , joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 Hi Joy I'm glad services are being made more available for you. It sounds like it's all coming together and working well for you. Unfortunately it's taken so long. As far as the Vest goes: I contacted The Australian Lung Foundation after I had heard that it was available in Australia. The Australian Lung Foundation emailed back saying that they had never heard of the Vest. I emailed back saying how shocked I was that such an eminent organisation hadn't heard of an appliance so widely used overseas & that was now available in Aus. Their reply was that it was expensive & that the ALF supports those in limited incomes - what a cop out! I did speak to the distributor of the Vest about 18 months ago & she said that they will lend the Vest to people for a month BUT they must pay for the cover which costs $600. Needless to say, I declined the offer. Keep well everyone. Theresa Subject: Re: VestTo: "bronchiectasis " <bronchiectasis >Received: Saturday, 5 September, 2009, 5:35 PM Hi Kay,They honestly don’t know of the Vest... As my GP said, we’re in frontier territory. Even in Oz terms we’re remote regional. I live on east coast in the top pointy bit of Australia – not right at the very top, but compared to distance from major cities of Melbourne and Sydney it may as well be on the moon!! A lovely tourist area (which makes some things expensive) and still lots nice places to go if you know where, without much expense, so am lucky in that respect. Also don’t have cold winters here which used to nearly kill me even as a kid...which is why I stay here even tho it makes getting medical/health services more difficult.Things are looking up tho, I’ve been able to stay home this exacerbation, have had physio 4 days last week, a couple of days the previous week and another tomorrow, and still avoided abx!!! If have to do the abx, will have ambulance transport to take me into hospital for PIC line & home same day, & neb Tobramycin as well as IV at home – no in-patient admission - & if do have to be admitted no more 20-30 hrs in ED hell waiting for a bed.... I almost cried with relief. Am still not feeling in the clear, but it’s so much more restful being home...and nice to check emails and see so many friends here...!!Time for me to go do some “fizzy†will have to catch up with other posts next time...Cheers all ,joy Get more done like never before with Yahoo!7 Mail. Learn more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2010 Report Share Posted May 23, 2010 I had not heard that before but would have to agree with them! Tony. > > hi Tony > > It's taken about a year to get anywhere close to getting maybe close > > to getting a Vest.... you say for you it didn't help. For me the > > Flutter valve doesn't help. > > > > So the questions that arise for me are: > > how advanced is your bronch, how many years/decades, how extensive is > > it? > > just that by the time the Flutter and bubble pep was introduced to me > > I had fibrosis and cysts already, and spine, abs and diaphragm worn > > out from coughing fits plus exhausting self-physio to try clear stuff > > that would no longer move. > > so is it to do with stages of bronch or other personal differences? > > For such a cost - & almost impossible to get hold of one to trial in > > Aus, makes it difficult, no way could I buy a car without a test > > drive, and these cost more than a brand new (small) car!! > > > > your experience and views may shed much light for me, > > > > cheers, > > Joy (Australia) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2010 Report Share Posted May 23, 2010 Yes, we have lived in Bellingham for 35 years, having moved from , Australia in 1975. It was a wonderful, quiet and safe place to bring up children in the the 1970's and '80's. We couldn't get over the fact that it was such a small city of approx 30,000 being 1 hour south of Vancouver B.C and 1.5 hours north of Seattle. The things that brought growth was the 1986 Expo in Vancouver B.C, then we brought in jet service to our tiny international airport, opened a mall and won the Alaska ferry from Seattle. It is still a nice place to live but with growth comes high real estate prices and crime. We are blessed because my wife of 40 years have all 3 of our children and all 3 of our grand children living within a 6 to 7 minute drive from us. We love the beautiful Pacific Northwest with it's changing seasons. I just wish that we had more thunderstorms as they are pretty rare around here, and I love the roll of thunder and the flash of lightening with or without rain. I must say that the Prednisone is making me feel so very much better, I am bringing up very little junk and my coughing spells are way down too, before starting on the steroid I was fearful of the mornings as the slightest effort or cough would leave me gasping for air, now after being on it for 3 days I wake up in the mornings with absolutely NO gasping for air, thank God. That is such a frightening sensation, to feel that you are dying and you don't know where your next breath will come from. So, as you can tell I feel estatic now that I can breathe normally again. I know that a lot of you ladies here are suffering terribly because of your disease and I do sympathize with you all. I feel privileged in getting to know some of you and supporting you in a small way thru this message board. Tony. http://health.groups.yahoo.com/group/bronchiectasis/post?act=reply & messageNum=21\ 505 > > > hi Tony > > > It's taken about a year to get anywhere close to getting maybe close > > > to getting a Vest.... you say for you it didn't help. For me the > > > Flutter valve doesn't help. > > > > > > So the questions that arise for me are: > > > how advanced is your bronch, how many years/decades, how extensive is > > > it? > > > just that by the time the Flutter and bubble pep was introduced to me > > > I had fibrosis and cysts already, and spine, abs and diaphragm worn > > > out from coughing fits plus exhausting self-physio to try clear stuff > > > that would no longer move. > > > so is it to do with stages of bronch or other personal differences? > > > For such a cost - & almost impossible to get hold of one to trial in > > > Aus, makes it difficult, no way could I buy a car without a test > > > drive, and these cost more than a brand new (small) car!! > > > > > > your experience and views may shed much light for me, > > > > > > cheers, > > > Joy (Australia) > > > > > > Quote Link to comment Share on other sites More sharing options...
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