Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 I don't know what Dx is, diagnosis? Mine is bronciectasis.Marsha yes Marsha..sorry, I'm so used to typing in medical slang lol..dx is diagnosis..tx is transplant yada yada <g> But..do you have COPD or Emphysema or some other lung ailment not yet dx'd? I didn't think you could get bronchiactasis as a primary..I thought that was secondary to another type of illness.. For example I'm Alpha1 ( primary ) bronchiactasis (secondary ) Anyone..?? Can't sleep?Try counting your blessings... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 I don't know what Dx is, diagnosis? Mine is bronciectasis. Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2006 Report Share Posted September 27, 2006 I don't have any other lung ailment that I know of. Although I quit many years ago, I am sure my lungs have paid and continue to pay for it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Can anyone answer this? My 15 year old daughter was diagnosed with bronchiectasis, took her to St. Louis to Children's Hosp. for a second opinion because the Children's Mercy Hosp. in Kansas City wanted to remove her middle lobe, and the thoracic/lung surgeon in St.Louis said absolutely not, that there HAD to be a REASON for the bronchiectasis, but some of you say that is your only diagnosis. Is that a diagnosis and a disease in and of itself, or do you get bronchiectasis as a result of something else? Thanks for any insight..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 28, 2006 Report Share Posted September 28, 2006 Can anyone answer this? My 15 year old daughter was diagnosed with bronchiectasis, took her to St. Louis to Children's Hosp. for a second opinion because the Children's Mercy Hosp. in Kansas City wanted to remove her middle lobe, and the thoracic/lung surgeon in St.Louis said absolutely not, that there HAD to be a REASON for the bronchiectasis, but some of you say that is your only diagnosis. Is that a diagnosis and a disease in and of itself, or do you get bronchiectasis as a result of something else? Thanks for any insight I would like to suggest you have her serum levels tested for Alpha1 Antitrypsin Deficiency. It's a simple test..a finger stick.. Someone that young with bronchiactasis and they want to remove her lobe?????????? I agree with your dr..don't.. I'm not a doctor, but I know many doctors.. I'm going to present your question to my A1ATD support group and see if we can get some responses for you. Hang in there and don't do anything hastily,.. This really alarms me.. Sandie Can't sleep?Try counting your blessings... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 That sounds very wrong to me. I am not a professional but that is such a radical thing to do to a young girl -- to anyone for that matter. Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 i must disagree with some of you about it being so wrong to remove someones lobe. i had mine removed in january (my right middle lobe) and i dont' regret it at all! i'm 29 years old now, and for the first time in years, i can bend over to pick things up off the floor (whenever i did this before, i would get a rush of phlegm and a coughing attack), i can laugh (again with the same results). i can go up stairs and talk while i walk again. and just this week, i started at a gym! better than i've felt in ages. my first day back at work after surgery, the first thing someone said to me was "wow, you don't cough anymore". which was fabulous cause we all know about our embarrassing coughing.... don't get me wrong, i still cough, but sooooo much less!! i actually REGRET not having found my current respirologist who suggested this earlier, because my original resp told me they don't take out parts of your lungs anymore and while he also didnt' do anything to try and help me with this disease, it ended up spreading to both of my lower lobes. i would have loved to get the one diseased lobe out 7 years ago and perhaps would never have to deal with this disease again. but instead, now i know that although i feel great now, i know in time, it will become worse again and i will continue to lose lung function over the years ( i'm currently FEV1 = 46%). i am trying whatever i can to slow this disease down. just food for thought. i think both sides of the option to have a lobe removed needed to be looked at. claudiaps - my history for the new people is that i am 29 year old female. i've had bronchiectasis for at least 8 years that I know of for sure (but i could have had it for longer... i didn't even find out until 4 years ago). no reason for the disease has been found yet, but my resp is still searching (the lab i work in does the alpha 1 anti-trypsin, and i want to learn more about it and ask about getting that one done). my symptoms were recurrent pneumonias (once/2 months), lots of coughing, lots of phlegm, short of breath. Talk is cheap. Use Yahoo! Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 2006 Report Share Posted September 29, 2006 ps - i also have a friend who had a lobe removed when she was 9 years old (although for bit of a different reason) and she got over it in no time (the young bounce back so quickly) and she says she still remembers how much better she felt after having the surgery done and is glad they did it. claudia How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 , It's interesting because St.Louis Children's was just adamant about there being an underlying cause for my 15 year old daughter's bronch. However, the pulmonologist here did not agree. I guess, perhaps, you can get a bad cold or pneumonia, and if there is some predisposition (perhaps genetic) you can end up with lung damage, i.e. bronch. I often wonder if my daughter never really has had asthma, but just suffered lung damage. I appreciate everyone's input, her bronch is localized, so she would be a classic case for middle lobe removal, if no other damage occurs, and while that chapter was partially closed this summer, it maybe something, depending on our healthy she stays, they we may end up doing. She basically has lived on antibiotics since July. I do not think that is a healthy thing to do either. I am just puzzled, there is no CF, or other cases of bronch, in any other family members, Lots of allergies, asthma, sinus, etc. But nothing this severe. Thanks for the input, Vickie (Ashli's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 I was told I had Bronchiectasis – and with further investigation I had a mycobacterium – that I guess could have caused the Bronchiectasis. I personally believe the symptoms I was having looked like Bronchiectasis – but now that I’m on antibiotics for the mycobacterium I’m getting better every day. I’m not saying that I don’t have Bronc – but it has been made worse by the mycobacterium – and I’m hoping that when I’m done with the antibiotics – I won’t be so bad. I have been to several Pulmonologists, allergists etc. to get to the bottom of my issue. I actually went to a pulmonologist for 2 years without any diagnosis – just kept shoveling antibiotics down me and I kept getting sick every 2 weeks…..he never ran any tests etc. Just make sure you trust your Dr. (many are lazy) and make sure you do everything in your power to get the correct diagnosis…. Just my thoughts J Good luck. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of VickieVL@... Sent: Thursday, September 28, 2006 4:44 PM To: bronchiectasis Subject: Re: Sandi Can anyone answer this? My 15 year old daughter was diagnosed with bronchiectasis, took her to St. Louis to Children's Hosp. for a second opinion because the Children's Mercy Hosp. in Kansas City wanted to remove her middle lobe, and the thoracic/lung surgeon in St.Louis said absolutely not, that there HAD to be a REASON for the bronchiectasis, but some of you say that is your only diagnosis. Is that a diagnosis and a disease in and of itself, or do you get bronchiectasis as a result of something else? Thanks for any insight..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 I was told I had Bronchiectasis – and with further investigation I had a mycobacterium – that I guess could have caused the Bronchiectasis. I personally believe the symptoms I was having looked like Bronchiectasis – but now that I’m on antibiotics for the mycobacterium I’m getting better every day. I’m not saying that I don’t have Bronc – but it has been made worse by the mycobacterium – and I’m hoping that when I’m done with the antibiotics – I won’t be so bad. I have been to several Pulmonologists, allergists etc. to get to the bottom of my issue. I actually went to a pulmonologist for 2 years without any diagnosis – just kept shoveling antibiotics down me and I kept getting sick every 2 weeks…..he never ran any tests etc. what kind of tests?? Can't sleep?Try counting your blessings... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2006 Report Share Posted October 1, 2006 and some powerful antifungal medica Why the antifungal med?? Thanks Can't sleep?Try counting your blessings... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Vicki (Ashli’s mom), I sometimes wonder how much ear infections in kids may also play a role in this disease. I have bronch and was diagnosed about 10 years ago. I have been tested for acid reflux, lung biopsy, etc. My pulmonary specialist told me that when we cough some may get into our lungs. Makes me wonder with sinus causing some drainage that can also lodge in the lung that also the problems of ear infections and the drainage, etc. has something to do with it too. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of VickieVL@... Sent: Sunday, October 01, 2006 2:56 PM To: bronchiectasis Subject: Re: Sandi , It's interesting because St.Louis Children's was just adamant about there being an underlying cause for my 15 year old daughter's bronch. However, the pulmonologist here did not agree. I guess, perhaps, you can get a bad cold or pneumonia, and if there is some predisposition (perhaps genetic) you can end up with lung damage, i.e. bronch. I often wonder if my daughter never really has had asthma, but just suffered lung damage. I appreciate everyone's input, her bronch is localized, so she would be a classic case for middle lobe removal, if no other damage occurs, and while that chapter was partially closed this summer, it maybe something, depending on our healthy she stays, they we may end up doing. She basically has lived on antibiotics since July. I do not think that is a healthy thing to do either. I am just puzzled, there is no CF, or other cases of bronch, in any other family members, Lots of allergies, asthma, sinus, etc. But nothing this severe. Thanks for the input, Vickie (Ashli's mom) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 I think that allergy plays a role in the whole thing also. AppletonVicki (Ashli’s mom), I sometimes wonder how much ear infections in kids may also play a role in this disease. I have bronch and was diagnosed about 10 years ago. I have been tested for acid reflux, lung biopsy, etc. My pulmonary specialist told me that when we cough some may get into our lungs. Makes me wonder with sinus causing some drainage that can also lodge in the lung that also the problems of ear infections and the drainage, etc. has something to do with it too.   From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of VickieVL@...Sent: Sunday, October 01, 2006 2:56 PMTo: bronchiectasis Subject: Re: Sandi ,It's interesting because St.Louis Children's was just adamant about there being an underlying cause for my 15 year old daughter's bronch. However, the pulmonologist here did not agree. I guess, perhaps, you can get a bad cold or pneumonia, and if there is some predisposition (perhaps genetic) you can end up with lung damage, i.e. bronch. I often wonder if my daughter never really has had asthma, but just suffered lung damage. I appreciate everyone's input, her bronch is localized, so she would be a classic case for middle lobe removal, if no other damage occurs, and while that chapter was partially closed this summer, it maybe something, depending on our healthy she stays, they we may end up doing. She basically has lived on antibiotics since July. I do not think that is a healthy thing to do either. I am just puzzled, there is no CF, or other cases of bronch, in any other family members, Lots of allergies, asthma, sinus, etc. But nothing this severe. Thanks for the input,Vickie (Ashli's mom) Appleton9229 Regents Road, #L427La Jolla CA 92037email nancyappleton@...website nancyappleton.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Hi Janet here! I guess my feelings are that cutting out something from one's body requires careful investigation before proceeding. I hear that one member had it done with grand results but also said that it is not a cure and that it may come back in another lobe! In my case I am infected all over!! I guess I will need a complete lung transplant.- I was interested in hearing about another member who " developed " bronc probably much like I did; i.e., as a child I had a bad case of measles and whooping cough; grew up in smoggy London during the 50's and 60's then smoked for a number of years before quitting 27 years ago!! Asthma runs rampant in my family but I was never once diagnosed with it and always felt lung healthy until just last year... Janet -- In bronchiectasis , Appleton wrote: > > I think that allergy plays a role in the whole thing also. > Appleton > > > > > Vicki (Ashli's mom), > > > > > > > > I sometimes wonder how much ear infections in kids may also play a > > role in this disease. I have bronch and was diagnosed about 10 > > years ago. I have been tested for acid reflux, lung biopsy, etc. > > My pulmonary specialist told me that when we cough some may get > > into our lungs. Makes me wonder with sinus causing some drainage > > that can also lodge in the lung that also the problems of ear > > infections and the drainage, etc. has something to do with it too. > > > > > > > > > > > > > > > > From: bronchiectasis > > [mailto:bronchiectasis ] On Behalf Of VickieVL@... > > Sent: Sunday, October 01, 2006 2:56 PM > > To: bronchiectasis > > Subject: Re: Sandi > > > > > > > > , > > > > It's interesting because St.Louis Children's was just adamant > > about there being an underlying cause for my 15 year old daughter's > > bronch. However, the pulmonologist here did not agree. I guess, > > perhaps, you can get a bad cold or pneumonia, and if there is some > > predisposition (perhaps genetic) you can end up with lung damage, > > i.e. bronch. I often wonder if my daughter never really has had > > asthma, but just suffered lung damage. I appreciate everyone's > > input, her bronch is localized, so she would be a classic case for > > middle lobe removal, if no other damage occurs, and while that > > chapter was partially closed this summer, it maybe something, > > depending on our healthy she stays, they we may end up doing. She > > basically has lived on antibiotics since July. I do not think that > > is a healthy thing to do either. I am just puzzled, there is no CF, > > or other cases of bronch, in any other family members, Lots of > > allergies, asthma, sinus, etc. But nothing this severe. Thanks for > > the input, > > > > Vickie (Ashli's mom) > > > > > > > > Appleton > 9229 Regents Road, #L427 > La Jolla CA 92037 > > email nancyappleton@... > website nancyappleton.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 Dear Sunnie, I had MAC first and about 4 months after I was cured, I developed a cough. For another 4 months after I was given antibiotics, cough would stop and a month later return and back on antibiotics. That is when the Bronch was diagnoised. Antibiotics were ineffective probably because my immune system was compromised after taking 18 months of 2000mg of antiobiotics for the MAC.Eileen-FLPlease note: message attachedReturn-Path: <sentto-4056817-13760-1159777257-ecbauer954=juno.com@...>Received: from mx17.lax.untd.com (mx17.lax.untd.com [10.130.24.77])by maildeliver01.nyc.untd.com with SMTP id AABCUBU9LAPLHR52for (sender <sentto-4056817-13760-1159777257-ecbauer954=juno.com@...>);Mon, 2 Oct 2006 01:20:58 -0700 (PDT)Received: from n15a.bullet.scd.yahoo.com (n15a.bullet.scd.yahoo.com [66.94.237.32])by mx17.lax.untd.com with SMTP id AABCUBU9KA2CAMG2for (sender <sentto-4056817-13760-1159777257-ecbauer954=juno.com@...>);Mon, 2 Oct 2006 01:20:57 -0700 (PDT)Comment: DomainKeys? See http://antispam.yahoo.com/domainkeysDomainKey-Signature: a=rsa-sha1; q=dns; c=nofws; s=lima; d=yahoogroups.com;b=nq/uoQzptC3BWfLY8hk4wxLjmarrbBxJCu9VdaGgyc1Aoef6jf4EdZ6kCu1Ub4VcG6c1sRuvUTJNlqFcpPYamwl3iJ0Me3tWsqHL5NpOiKLSu968c2jDY2RHHsZeECI6;Received: from [66.218.69.3] by n15.bullet.scd.yahoo.com with NNFMP; 02 Oct 2006 08:20:57 -0000Received: from [66.218.66.99] by t3.bullet.scd.yahoo.com with NNFMP; 02 Oct 2006 08:20:57 -0000X-Yahoo-Newman-Property: groups-emailX-Yahoo-Newman-Id: 4056817-m13760X-Sender: Sunniesback55@...X-Apparently-To: bronchiectasis Received: (qmail 68882 invoked from network); 2 Oct 2006 08:18:12 -0000Received: from unknown (66.218.67.36) by m34.grp.scd.yahoo.com with QMQP; 2 Oct 2006 08:18:12 -0000Received: from unknown (HELO imo-m23.mx.aol.com) (64.12.137.4) by mta10.grp.scd.yahoo.com with SMTP; 2 Oct 2006 08:18:12 -0000Received: from Sunniesback55@...by imo-m23.mx.aol.com (mail_out_v38_r7.6.) id r.238.1278f8e6 (48624) for <bronchiectasis >; Mon, 2 Oct 2006 04:11:36 -0400 (EDT)Message-ID: To: bronchiectasis X-Mailer: 9.0 Security Edition for Windows sub 5331X-Spam-Flag: NOX-Originating-IP: 64.12.137.4X-eGroups-Msg-Info: 1:0:0:0From: Sunniesback55@...Sender: bronchiectasis MIME-Version: 1.0Mailing-List: list bronchiectasis ; contact bronchiectasis-owner Delivered-To: mailing list bronchiectasis List-Id: <bronchiectasis.yahoogroups.com>Precedence: bulkList-Unsubscribe: <mailto:bronchiectasis-unsubscribe >Date: Mon, 2 Oct 2006 04:11:35 EDTSubject: Re: SandiReply-To: bronchiectasis Content-Type: multipart/mixed; boundary="part1_238.1278f8e6.325223b7_boundary"X-ContentStamp: 6:3:2504596850X-MAIL-INFO:49333fdac78a636b8a0b1e6e5f37276a4fc78e6eeaea6e3beb8e7bX-UNTD-Peer-Info: 66.94.237.32|n15a.bullet.scd.yahoo.com|n15a.bullet.scd.yahoo.com|sentto-4056817-13760-1159777257-ecbauer954=juno.com@...X-UNTD-UBE:-1 I was told I had Bronchiectasis – and with further investigation I had a mycobacterium – that I guess could have caused the Bronchiectasis. I personally believe the symptoms I was having looked like Bronchiectasis – but now that I’m on antibiotics for the mycobacterium I’m getting better every day. I’m not saying that I don’t have Bronc – but it has been made worse by the mycobacterium – and I’m hoping that when I’m done with the antibiotics – I won’t be so bad. I have been to several Pulmonologists, allergists etc. to get to the bottom of my issue. I actually went to a pulmonologist for 2 years without any diagnosis – just kept shoveling antibiotics down me and I kept getting sick every 2 weeks…..he never ran any tests etc. what kind of tests?? Can't sleep?Try counting your blessings... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2006 Report Share Posted October 2, 2006 I had been doing sputum tests for a few months with no sign of anything - I also has a bronchoscopy and they found nothing…..I did one last sputum test and there it was…..I have been on 3 antibiotics since them – about 2 months – and I’m still full of mucus…but I’m definitely not sick like I was in bed about 3 days a week – I feel like I’m finally on the road to recovery…. I have to say – I got tired of every Dr. saying – I don’t know what it is….so I kept pushing…and finally a diagnosis……a very common bacteria that for some reason my body did not fight off and no one was looking hard enough. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of Sunniesback55@... Sent: Monday, October 02, 2006 1:12 AM To: bronchiectasis Subject: Re: Sandi In a message dated 10/1/2006 2:59:17 P.M. Eastern Standard Time, teambrown@... writes: I was told I had Bronchiectasis – and with further investigation I had a mycobacterium – that I guess could have caused the Bronchiectasis. I personally believe the symptoms I was having looked like Bronchiectasis – but now that I’m on antibiotics for the mycobacterium I’m getting better every day. I’m not saying that I don’t have Bronc – but it has been made worse by the mycobacterium – and I’m hoping that when I’m done with the antibiotics – I won’t be so bad. I have been to several Pulmonologists, allergists etc. to get to the bottom of my issue. I actually went to a pulmonologist for 2 years without any diagnosis – just kept shoveling antibiotics down me and I kept getting sick every 2 weeks…..he never ran any tests etc. what kind of tests?? Can't sleep? Try counting your blessings... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Vicki, My 80 year old mother has bronch, and now so do I diagnosed at 52. I have had every test known to mankind and they cannot find an underlying cause, just one bad infection the year before where I coughed and coughed. I was on antibiotics the whole time but still had the cough and still did the damage. It appears from this site that lots of people have genetic reasons like inadequate or malfunctioning cilia, cystic fibrosis, etc. and lots of elderly people who have dealt with this since they were babies. I do have allergies and sinus drainage so that could be a contributing factor. When I go back to Mayo I'm going to have them check for acid reflux or some other problem that could be contributing to it. Mine is also localized and I asked about surgery which would, if they got it all would basically "cure" me. I voted for that but was sick at hte time and they did not want to do it unless there was no infection anywhere. All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2006 Report Share Posted October 15, 2006 Childhood exposure to measels and other common ailments can cause bronchiectasis and is often not diagnosed for a long time. As good as St. Louis Children's Hospital is, keeping her on antibiotics for a long time is not often prescribed. The trouble is that eventually one may get a bug that is resistant to the antibiotic. I have had the disease for many years and carry some antibiotics in case an infection starts my pulmonologist (also in St. Louis) wants to use these sparingly. Tolly Quote Link to comment Share on other sites More sharing options...
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