Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 I too have been the squeeky wheel. But just to add a few lines here. Karin, the atypical pneumonias, TB's and many others, are well renowned for many returns sadly. I too have been exposed to MRSA, HIV aids, TB. And several others and I have no immunity. I did get atypical TB and also the Pneumonia, and have had 3 rebouts of the TB and 2 of the pneumonia, however thats a long time ago. I have stuck to my all naturals for over 10 years now, and fish oils etc. Thank god some things do work, for those of us who can no longer take any form of AB's etc. Many people do become laxadaisy when they begin to get well, feel well etc, and stop taking good care of themselves. However I have kept the same regime for almost 12 years now, and been infection free for over 11 years. To the mum, of the young boy, I have 3 kiddies in my immediate care who, are aged from 9 to 16. All but one is still with their peadiatician pulmonogists. That other is 16, and very much a man, so was unable to stay with his doctor. However they work very closely with us all. I go into any and every appt with him as his advocate and as his recognised carer. We don,t have the vest here in Australia, however we do pretty well with getting most things, I a=have been involved in 2 appeals, and we won both. However I am sure if we hadn,t done our homework, and got lots of letters of support, things may have been different, we really had to push and persevere with an awful lot I can tell you. There are lots of good things out there to loosen thick muccous, and there are lots of good techs you can learn to assist too. Karin I am 60 next birthday, and I can tell you some days I,m 100, but most days still feel 38. No 40 was a bad year for me, lol. But because I take no nonsence and because I make sure all docs know my experience and the fact that I leave no stone unturned, I have only ever had 2-3 doctors who were too BLAZEE Becky, there are 3-4 young people who joined up early in 2006, so they also may see your post. Hugs to all, and happy healthy 2007 wishes to all from Australia. Sandy Carer/ Consumer Representative Central Area, Mental Health Clinical network. " Sec/ Co -ord HBCAG & GEMS. Consumer/ carer rep to FCIMHS Community Consultant on Mental Health /Fraser Coast. Sandy R . " Nothing about us without us " HBCAG " Promoting Excellence in Mental Health " ________________________________ > Date: Sun, 31 Dec 2006 09:02:30 +0000 > From: bronchiectasis > To: bronchiectasis > Subject: Digest Number 1495 > > Bronchiectasis Support Group <http://groups.yahoo.com/group/bronchiectasis;_ylc=X3oDMTJkMzBudWNoBF9TAzk3MzU5N\ zE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BHNlYwNoZHIEc2xrA2hwaARzdGltZQMxM\ TY3NTU1NzUw> > Messages In This Digest (16 Messages) > 1a. > Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Becki Snyder > 1b. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Holt > 1c. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Karin > 1d. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Janet Duhe > 1e. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Janet Duhe > 1f. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Holt > 1g. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Bunny & Bob > 1h. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Janet Duhe > 1i. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Holt > 1j. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Holt > 1k. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. From: Holt > 2. > Happy New Year From: Sunniesback55@... > 3a. > Re: Meaning of " A Typical From: Holt > 3b. > Re: Meaning of " A Typical From: Karin > 4a. > Young Adults From: rdprice64 > 4b. > Re: Young Adults From: Holt > View All Topics<http://groups.yahoo.com/group/bronchiectasis/messages;_ylc=X3oDMTJmM2JvaD\ RwBF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BHNlYwNkbXNnBHNsaw\ NhdHBjBHN0aW1lAzExNjc1NTU3NTA-?xm=1 & m=p & tidx=1> | Create New Topic<http://groups.yahoo.com/group/bronchiectasis/post;_ylc=X3oDMTJmZ3Vib3RvBF9\ TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BHNlYwNkbXNnBHNsawNudHB\ jBHN0aW1lAzExNjc1NTU3NTA-> > Messages > 1a. > Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. <http://groups.yahoo.com/group/bronchiectasis/message/14448;_ylc=X3oDMTJyOHAzN2F\ pBF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0NDQ4BHN\ lYwNkbXNnBHNsawN2bXNnBHN0aW1lAzExNjc1NTU3NTA-> > Posted by: " Becki Snyder " prograf_princess@... <mailto:prograf_princess@...?Subject=%20Re:Any%20Young%20Adults?%20Like%\ 20under%2040%20but%20ESP%20in%20their%2020's?%20Im%2028yo.> missgoobergirl <http://profiles.yahoo.com/missgoobergirl> > Sat Dec 30, 2006 2:50 am (PST) > Hi > I am curious to see how many young adults and teens we have here . . . Say > under30 and then anyone under 35years old. I am curious !! ! ! > I am still in my 20's, 28yo, but the big 30 is coming closer. > Becki > Back to top > Reply to sender <mailto:prograf_princess@...?Subject=Re:Any%20Young%20Adults?%20Like%20u\ nder%2040%20but%20ESP%20in%20their%2020's?%20Im%2028yo.> | Reply to group <mailto:bronchiectasis ?Subject=%20Re:Any%20Young%20Adults?%20Lik\ e%20under%2040%20but%20ESP%20in%20their%2020's?%20Im%2028yo.> | Reply via web post <http://groups.yahoo.com/group/bronchiectasis/post;_ylc=X3oDMTJyN2tqdWI5BF9TAzk3\ MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0NDQ4BHNlYwNkbXNn\ BHNsawNycGx5BHN0aW1lAzExNjc1NTU3NTA-?act=reply & messageNum=14448> > Messages in this topic <http://groups.yahoo.com/group/bronchiectasis/message/14448;_ylc=X3oDMTM3YTgxc3R\ yBF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0NDQ4BHN\ lYwNkbXNnBHNsawN2dHBjBHN0aW1lAzExNjc1NTU3NTAEdHBjSWQDMTQ0NDg-> (11) > 1b. > Re: Any Young Adults? Like under 40 but ESP in their 20's? Im 28yo. <http://groups.yahoo.com/group/bronchiectasis/message/14451;_ylc=X3oDMTJyYmJhZmc\ zBF9TAzk3MzU5NzE1BGdycElkAzQwNTY4MTcEZ3Jwc3BJZAMxNzA1MDYxNTg5BG1zZ0lkAzE0NDUxBHN\ lYwNkbXNnBHNsawN2bXNnBHN0aW1lAzExNjc1NTU3NTA-> > Posted by: " Holt " maryholt12@... <mailto:maryholt12@...?Subject=%20Re:%20Any%20Young%20Adults?%20Like%20unde\ r%2040%20but%20ESP%20in%20their%2020's?%20Im%2028yo.> maryholt12 <http://profiles.yahoo.com/maryholt12> > Sat Dec 30, 2006 6:28 am (PST) > Hi Becki, > I'm still a young adult under 35, but rapidly getting older!!!! Time flies! > Hugs:0) > LIz ... the big 33-years-old .... Birthday is January 4th > Becki Snyder <prograf_princess@...> wrote: > Hi > I am curious to see how many young adults and teens we have here . . . Say under30 and then anyone under 35years old. I am curious !! ! ! > I am still in my 20's, 28yo, but the big 30 is coming closer. > Becki > Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you! ) > carepages.com name: maryelizabethholt > Please watch: Live Life Then Give Life! - UK > http://www.youtube.com/watch?v=Nz33i6prkuQ. > " Don't take your organs to Heaven, heaven knows we need them here. " > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 I have found out that only in USA is Alpha 1 is paid for. Canada does not.Is it true that Aust. Medical doesn't pay for Alpha 1 too?? Alpha1 Antitrypsin Immune Deficiency aka Alpha1 is a genetic disorder. The treatment is Prolastin and Aralast. Just a technicality in the wording above..but remember..Alpha1 is the disorder..and the treatment you're referring to being paid for is an infusion w/Prolastin or Aralast.. Our support group list for A1AD is also international..and if I'm not mistaken, no..the US is the only country where the treatment for A1AD is even available..it's not in Canada, the UK nor Aussie yet... What kind of group are you looking for..and what exactly is it..specifically, you want to fight?? I'm a little confused there.. Happy New Year Sandie in MD Never Look Down on SomeoneUnless You're Gonna Help Them Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 Happy New Year.. Guess its already 2007 in Australia. Question... I am a newbie to all of this stuff but Sandy has so educated me. :-) I have found out that only in USA is Alpha 1 is paid for. Canada does not. Is it true that Aust. Medical doesn't pay for Alpha 1 too?? My Doc is on a committee trying to get the government to pay for treatment. I have to call the Dr back to be sure I'm not Alpha 1 cause when he called before xmas I didn't' real hear anything other that I did not have TB. I am going to find the group that is fighting along with my Doc and see what I can do. This is not right. My mother and I both have Bronch. So even if there is no Alpha 1 we must have a genetic weakness in our lungs for both of us to have Bronch. She knows of no one else in her family that has lung problems or been sick like I have. I am also curious ,, does anyone have stomach problems too???? I have had my gall ballader removed and have IBS. My mother has developed problem over the past 1yr. Could be just old age or nerves for her. Just wondering if all my health problems are connected in anyway. Here is to 2007!!! It will be a grand year. Debbie/Canada RE: Digest Number 1495 > Date: Sun, 31 Dec 2006 19:43:24 +1000 > > > I too have been the squeeky wheel. > But just to add a few lines here. > > Karin, the atypical pneumonias, TB's and many others, are well renowned for many returns sadly. > > I too have been exposed to MRSA, HIV aids, TB. > And several others and I have no immunity. > I did get atypical TB and also the Pneumonia, and have had 3 rebouts of the TB and 2 of the pneumonia, however thats a long time ago. > I have stuck to my all naturals for over 10 years now, and fish oils etc. > Thank god some things do work, for those of us who can no longer take any form of AB's etc. > > Many people do become laxadaisy when they begin to get well, feel well etc, and stop taking good care of themselves. > However I have kept the same regime for almost 12 years now, and been infection free for over 11 years. > > To the mum, of the young boy, I have 3 kiddies in my immediate care who, are aged from 9 to 16. > All but one is still with their peadiatician pulmonogists. > That other is 16, and very much a man, so was unable to stay with his doctor. > However they work very closely with us all. > I go into any and every appt with him as his advocate and as his recognised carer. > > We don,t have the vest here in Australia, however we do pretty well with getting most things, I a=have been involved in > 2 appeals, and we won both. > However I am sure if we hadn,t done our homework, and got lots of letters of support, > things may have been different, we really had to push and persevere with an awful lot I can tell you. > > There are lots of good things out there to loosen thick muccous, and there are lots of good techs you can learn to assist too. > > > Karin I am 60 next birthday, and I can tell you some days I,m 100, but most days still feel 38. > No 40 was a bad year for me, lol. > But because I take no nonsence and because I make sure all docs know my experience and the fact that I leave no stone unturned, > I have only ever had 2-3 doctors who were too BLAZEE > > Becky, there are 3-4 young people who joined up early in 2006, so they also may see your post. > > Hugs to all, and happy healthy 2007 wishes to all from Australia. > Sandy > > Carer/ Consumer Representative > Central Area, Mental Health Clinical network. > " Sec/ Co -ord HBCAG & GEMS. > Consumer/ carer rep to FCIMHS > Community Consultant on Mental Health /Fraser Coast. > Sandy R . > > " Nothing about us without us " > HBCAG " Promoting Excellence in Mental Health " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 "fight" well my Doc mentioned that he is with a group that is trying to convinced the Canadian gov't to pay for treatment for Alpha 1 people. He said our gov't doesn't deem it a necessary treatment. As I understand it. Somewhere, and I can't find it again, is a local support group for A1. I'll have to keep surfing. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Sunday, December 31, 2006 12:42 PMTo: bronchiectasis Subject: Re: Digest Number 1495 I have found out that only in USA is Alpha 1 is paid for. Canada does not.Is it true that Aust. Medical doesn't pay for Alpha 1 too?? Alpha1 Antitrypsin Immune Deficiency aka Alpha1 is a genetic disorder. The treatment is Prolastin and Aralast. Just a technicality in the wording above..but remember..Alpha1 is the disorder..and the treatment you're referring to being paid for is an infusion w/Prolastin or Aralast.. Our support group list for A1AD is also international..and if I'm not mistaken, no..the US is the only country where the treatment for A1AD is even available..it's not in Canada, the UK nor Aussie yet... What kind of group are you looking for..and what exactly is it..specifically, you want to fight?? I'm a little confused there.. Happy New Year Sandie in MD Never Look Down on SomeoneUnless You're Gonna Help Them Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 I have bronchiectasis. Five years ago I develpoed an ulcer. Four years ago I had the gallbladder and gallstones removed. I have reflux for which I take Prevacid. I also have a hiatus hernia (sp). I haven't a clue if this is related to the bronchiectasis. I have an enlarged liver on top of everything else. Karin > > > > Happy New Year.. Guess its already 2007 in Australia. > > Question... I am a newbie to all of this stuff but Sandy has so educated me. > :-) > I have found out that only in USA is Alpha 1 is paid for. Canada does not. > Is it true that Aust. Medical doesn't pay for Alpha 1 too?? > My Doc is on a committee trying to get the government to pay for treatment. > I have to call the Dr back to be sure I'm not Alpha 1 cause when he called > before xmas I didn't' real hear anything other that I did not have TB. I am > going to find the group that is fighting along with my Doc and see what I > can do. This is not right. > My mother and I both have Bronch. So even if there is no Alpha 1 we must > have a genetic weakness in our lungs for both of us to have Bronch. She > knows of no one else in her family that has lung problems or been sick like > I have. > > I am also curious ,, does anyone have stomach problems too???? > I have had my gall ballader removed and have IBS. My mother has developed > problem over the past 1yr. Could be just old age or nerves for her. > Just wondering if all my health problems are connected in anyway. > > Here is to 2007!!! It will be a grand year. > > Debbie/Canada > > > > RE: Digest Number 1495 > > Date: Sun, 31 Dec 2006 19:43:24 +1000 > > > > > > I too have been the squeeky wheel. > > But just to add a few lines here. > > > > Karin, the atypical pneumonias, TB's and many others, are well renowned > for many returns sadly. > > > > I too have been exposed to MRSA, HIV aids, TB. > > And several others and I have no immunity. > > I did get atypical TB and also the Pneumonia, and have had 3 rebouts of > the TB and 2 of the pneumonia, however thats a long time ago. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2006 Report Share Posted December 31, 2006 "fight" well my Doc mentioned that he is with a group that is trying to convinced the Canadian gov't to pay for treatment for Alpha 1 people. He said our gov't doesn't deem it a necessary treatment. As I understand it. Somewhere, and I can't find it again, is a local support group for A1. I'll have to keep surfing. No need to surf..with your permission, I'll submit your concerns to my Alpha1 list group and have the info for you w/in the next few days..ok?? Sandie Never Look Down on SomeoneUnless You're Gonna Help Them Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 that would be grand Sandie..thxs From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@...Sent: Monday, January 01, 2007 12:14 AMTo: bronchiectasis Subject: Re: Digest Number 1495 "fight" well my Doc mentioned that he is with a group that is trying to convinced the Canadian gov't to pay for treatment for Alpha 1 people. He said our gov't doesn't deem it a necessary treatment. As I understand it. Somewhere, and I can't find it again, is a local support group for A1. I'll have to keep surfing. No need to surf..with your permission, I'll submit your concerns to my Alpha1 list group and have the info for you w/in the next few days..ok?? Sandie Never Look Down on SomeoneUnless You're Gonna Help Them Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 I guess I have been fortunate. I am now 81 and my pulmonologist gladly took on my primary care and has really been wonderful. He jokes that with Bronc I need a private physician who only has one patient (me), but whenever I need help he is there. The care you get is definitely a function of the physician and no one should make treatment age dependent. Hope everyone has a great 2007. Tolly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 where can I go to stop all these e-mail. on bronchietasis Please take me off Reply-To: bronchiectasis To: <bronchiectasis >Subject: RE: Digest Number 1495Date: Mon, 1 Jan 2007 10:19:12 -0800 that would be grand Sandie..thxs From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55aolSent: Monday, January 01, 2007 12:14 AMTo: bronchiectasis Subject: Re: Digest Number 1495 In a message dated 12/31/2006 4:38:26 PM Eastern Standard Time, debrestelus (DOT) net writes: "fight" well my Doc mentioned that he is with a group that is trying to convinced the Canadian gov't to pay for treatment for Alpha 1 people. He said our gov't doesn't deem it a necessary treatment. As I understand it. Somewhere, and I can't find it again, is a local support group for A1. I'll have to keep surfing. No need to surf..with your permission, I'll submit your concerns to my Alpha1 list group and have the info for you w/in the next few days..ok?? Sandie Never Look Down on SomeoneUnless You're Gonna Help Them Up ><< sunnie.jpg >> Experience the magic of the holidays. Talk to Santa on Messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 Reply-To: bronchiectasis To: bronchiectasis Subject: RE: Digest Number 1495Date: Mon, 01 Jan 2007 13:36:20 -0500 where can I go to stop all these e-mail. on bronchietasis Please take me off From: "Debbie " <debrestelus (DOT) net>Reply-To: bronchiectasis To: <bronchiectasis >Subject: RE: Digest Number 1495Date: Mon, 1 Jan 2007 10:19:12 -0800 that would be grand Sandie..thxs From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55aolSent: Monday, January 01, 2007 12:14 AMTo: bronchiectasis Subject: Re: Digest Number 1495 In a message dated 12/31/2006 4:38:26 PM Eastern Standard Time, debrestelus (DOT) net writes: "fight" well my Doc mentioned that he is with a group that is trying to convinced the Canadian gov't to pay for treatment for Alpha 1 people. He said our gov't doesn't deem it a necessary treatment. As I understand it. Somewhere, and I can't find it again, is a local support group for A1. I'll have to keep surfing. No need to surf..with your permission, I'll submit your concerns to my Alpha1 list group and have the info for you w/in the next few days..ok?? Sandie Never Look Down on SomeoneUnless You're Gonna Help Them Up ><< sunnie.jpg >> Experience the magic of the holidays. Talk to Santa on Messenger. Get FREE Web site and company branded e-mail from Microsoft Office Live Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 On the bottom of each e-mail – there is a link to unsubscribe…it’s very easy to do. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Bigler Sent: Monday, January 01, 2007 10:48 AM To: bronchiectasis Subject: RE: Digest Number 1495 From: " Bigler " <patbiglerhotmail> Reply-To: bronchiectasis To: bronchiectasis Subject: RE: Digest Number 1495 Date: Mon, 01 Jan 2007 13:36:20 -0500 where can I go to stop all these e-mail. on bronchietasis Please take me off From: " Debbie " <debrestelus (DOT) net> Reply-To: bronchiectasis To: <bronchiectasis > Subject: RE: Digest Number 1495 Date: Mon, 1 Jan 2007 10:19:12 -0800 that would be grand Sandie..thxs From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55aol Sent: Monday, January 01, 2007 12:14 AM To: bronchiectasis Subject: Re: Digest Number 1495 In a message dated 12/31/2006 4:38:26 PM Eastern Standard Time, debrestelus (DOT) net writes: " fight " well my Doc mentioned that he is with a group that is trying to convinced the Canadian gov't to pay for treatment for Alpha 1 people. He said our gov't doesn't deem it a necessary treatment. As I understand it. Somewhere, and I can't find it again, is a local support group for A1. I'll have to keep surfing. No need to surf..with your permission, I'll submit your concerns to my Alpha1 list group and have the info for you w/in the next few days..ok?? Sandie Never Look Down on Someone Unless You're Gonna Help Them Up ><< sunnie.jpg >> Experience the magic of the holidays. Talk to Santa on Messenger. Get FREE Web site and company branded e-mail from Microsoft Office Live Quote Link to comment Share on other sites More sharing options...
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