Guest guest Posted February 11, 2006 Report Share Posted February 11, 2006 --- Hello , I am in Australia, but I do know there are several people in this group and in the bronchfriends group, who attend the Mayo Clinic. I get newsletters from the MAYO, they have a wonderful name for their work in heart , lung and mental health. So you should get some responses from either groups. Sandy In bronchiectasis , " Cook " wrote: > > Hi everyone. I haven't posted for several months. I am going next week > to Mayo Clinic in Rochester, MN to see their pulmonary dept. Has anyone > been there?? This is my first visit. Thanks! > > > > > Cook, Case Manager > UICOMP > One Illini Dr. > Peoria, IL 61656-1649 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 Any suggestion what antibiotics in the drug menuI should take now? My primary doc is clueless, on Fridays, myrespirologist won't work. Appreciate any suggestions. Karin..I've found that Azythro didn't do much to help me either. Right now I'm on a 10 day regime of Ceftin..2xs/day..then I'll be starting Augmentin for another 10 days. A couple years back I was on Doxycycline, like Marsha, for 14 days..skipped a week, then on Erythomyacin, like Marsha, for 14 days..skipped another week. I was on that regime for 3 mos. It really helped. I hope you find the right med combo to help you. Sandie in MD Never Look Down on SomeoneUnless You're Willing to helpThem Up Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 Dear Karin, Your respirologist should be following what bacteria is growing in your sputum cultures. Its important in order to make treatment decisions when doctors are choosing antibiotics. My infectious disease specialist uses my previous cultures as a guideline. As soon as an infection is brewing he always wants a new culture done and I also have another one done about a week post IVs (I'm on IV antibiotics every month). He treats based on previous cultures, because my new cultures tends to take weeks to process and often grow two or three or more different kinds of bacterias. Have you seen Dr. Tullis yet or one of the other bronch/CF doctors. If yes, perhaps calling the clinic at St. Mike's might provide you with more answers. My family doctor puts a call into my ID specialist whenever he is unsure. When my ID specialist is unavailable one of his colleagues is covering and they just call up for my chart and look at cultures and my GP and the ID doctor has a discussion.Can your GP do likewise? If your respirologist is unavailable perhaps speaking to one of his colleagues. Does it work the same way? I assume one of the other specialists would have access to your chart. Whatever you do if your lungs are getting worse you need to see a doctor because infections that are not properly treated can lead to further lung damage. if worse comes to worse perhaps going to the ER at St. Mike's due to the hospital having the adult bronchiectass and CF clinic or going to your regular hospital. Hoping you are soon feeling much better. Hugs:0) Liz 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." All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 30, 2007 Report Share Posted January 30, 2007 Karin.. A doctor is only as good as he is to your well being and care. He maybe ' all that ' ..but it doesn't sound, to me, as if he has your BEST interest ..as his patient..in check. It sounds like you've got your plate full..but still, get a doctor who's gonna be there for you when you need him. What area do you live in? Sandie in MD The real art of conversation is to not only say the right thing in the right place, but also to leave unsaid the wrong thing at the tempting moment Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 I take Doxycyclin 3 days per week; the following week I take Erythromycin for 3 days, then back to Doxy. the following week and so on alternating drugs three days per week plus postural drainage every day. Mucous will always be a problem with bronchiectasis. You have to get rid of it otherwise it sits in little puddles in your lungs and infections develop. I have been on this regimen for 6 months and feel my illness is under control now. Not to say I don't cough during the day as I do, but I don't have attacks like I used to have and I don't feel kind of sick all the time like I used to feel. But if I skip the postural drainage for a day or two I start to feel under the weather. Marsha/NYC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 I live in the burbs. To take a sputum sample to the downtown hospital lab takes 2 hours. Then what? I had asked Dr. Balter many times what I should do between the twice yearly appointments. He said for my primary doctor to call him. My family phys. does, but Dr. Balter is never available. When Dr. Balter (Mt. Sinai) is not in the office, no one has access to my chart. I had planned to switch over to St.Mike's but haven't been well enough even to bother to go there. It's 1 1/2 h by public transportation. Some years ago I happened to be getting sick while in the city, I walked into Dr.Balter's office, he said I should have called he doesn't run a walk in clinic. I turned around to leave saying fine, I will go to the ER. He then said, o.k. sit down, I'll squeeze you in. He is a highly thought of respirologist. He is on the phone throughout the day giving advice to other respirologists about hard to treat cases. He's a professor, lecturer at the U of T. He has a fellowship of this and that, he had his resp. training in the US. I also found out that he's more interested in Asthma patients. When he sees me on scheduled appointments, I am fine, I do almost as well as a healthy person on the spirometer I guess it's called. My bronchiectasis is minimal as he says. But throughout the 40 years it has spread from the lower lobe to the right middle lobe. I also have mitral valve prolapse due to untreated infections. Someitmes it's better to live in a smaller city, get better treatment I think. I need to take antibiotics abt. 3 times a year. For 3 years now it's been Avelox and Azithromycin, isn't there another antibiotic I can take or is this it. Mycobacteria has never shown on my bronchoscopy, I have streptococcus pneumonia b.--that showed up in Dec. 2005. I am part of a study, as if that's going to help me. Karin > > Dear Karin, > > Your respirologist should be following what bacteria is growing in your sputum cultures. Its important in order to make treatment decisions when doctors are choosing antibiotics. My infectious disease specialist uses my previous cultures as a guideline. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Thanks Sandie, I made a note of the three drugs I haven't taken yet. I will see what the doc says. I did ask the pharmacist what other doctors prescribe for chest infections, he mentioned the ones I have been on in the past and the present azithromycin and avelox. The avelox made me dizzy and nocious. The azithromycin worked. But 3 days later I was sick again. In the past I was on cipro, erithromycin (sp) and some I can't remember. Too many years, Karin > > > > In a message dated 1/30/2007 10:36:06 P.M. Eastern Standard Time, > karin_44@... writes: > > Any suggestion what antibiotics in the drug menu > I should take now? My primary doc is clueless, on Fridays, my > respirologist won't work. Appreciate any suggestions. > > > > Karin..I've found that Azythro didn't do much to help me either. Right now > I'm on a 10 day regime of Ceftin..2xs/day..then I'll be starting Augmentin for > another 10 days. > A couple years back I was on Doxycycline, like Marsha, for 14 days..skipped > a week, then on Erythomyacin, like Marsha, for 14 days..skipped another week. > I was on that regime for 3 mos. It really helped. > I hope you find the right med combo to help you. > Sandie in MD > > > > > Never Look Down on Someone > Unless You're Willing to help > Them Up > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 thanks Marsha for replying, I wrote down the dox, I did take Erythromycin some 15 years ago, don't think they will work. I will check online if Dox is available in Canada Karin > > I take Doxycyclin 3 days per week; the following week I take Erythromycin > for 3 days, then back to Doxy. the following week and so on alternating > drugs three days per week plus postural drainage every day. Mucous will > always be a problem with bronchiectasis. You have to get rid of it > otherwise it sits in little puddles in your lungs and infections develop. > > I have been on this regimen for 6 months and feel my illness is under > control now. Not to say I don't cough during the day as I do, but I don't > have attacks like I used to have and I don't feel kind of sick all the time > like I used to feel. But if I skip the postural drainage for a day or two I > start to feel under the weather. > > Marsha/NYC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Levaquin is just about the only antibiotic that works on my lung infections. I had one in January also with the horrible cough and digusting phlem. I am now free of both.Eileen_FL -- "Karin" wrote:Return-Path: <sentto-4056817-14834-1170214489-ecbauer954=juno.com@...>Received: from mx25.lax.untd.com (mx25.lax.untd.com [10.130.24.85])by maildeliver11.nyc.untd.com with SMTP id AABC6ADU5AWSLBP2for (sender <sentto-4056817-14834-1170214489-ecbauer954=juno.com@...>);Tue, 30 Jan 2007 19:34:51 -0800 (PST)Received: from n31c.bullet.scd.yahoo.com (n31c.bullet.scd.yahoo.com [66.94.237.8])by mx25.lax.untd.com with SMTP id AABC6ADU3A33XDU2for (sender <sentto-4056817-14834-1170214489-ecbauer954=juno.com@...>);Tue, 30 Jan 2007 19:34:49 -0800 (PST)Comment: DomainKeys? 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31 Jan 2007 03:27:30 -0000Received: from [66.218.66.87] by t8.bullet.scd.yahoo.com with NNFMP; 31 Jan 2007 03:27:30 -0000To: bronchiectasis Message-ID: <epp2b0+a7k9eGroups>User-Agent: eGroups-EW/0.82X-Mailer: Yahoo Groups Message PosterX-Originating-IP: 69.147.64.117X-eGroups-Msg-Info: 1:6:0:0X-Yahoo-Post-IP: 70.52.177.158X-Yahoo-Profile: sit_by_the_beachSender: 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: Wed, 31 Jan 2007 03:27:28 -0000Subject: bronchiectasisReply-To: bronchiectasis X-Yahoo-Newman-Property: groups-email-ffContent-Type: multipart/alternative; boundary="b8l-PG3HdwqlpKWIy3L152jvqBgUoDxVEOMz5Od"X-ContentStamp: 16:8:1482232894X-MAIL-INFO: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-UNTD-Peer-Info: 66.94.237.8|n31c.bullet.scd.yahoo.com|n31c.bullet.scd.yahoo.com|sentto-4056817-14834-1170214489-ecbauer954=juno.com@...X-UNTD-UBE:-1 Hi,I had a lung infection early January. For 10 days I went on Avelox. When finished, January 14, I was so sick, chestpain, coughing up weirdcoloured phlegm, the usual. Back to my general practitioner, heprescibed Azithromycin. Now that I am done with the azithromycin, Istill have a croopy kind of cough. Cough up weird stuff. Back to thedoctor this Friday. Any suggestion what antibiotics in the drug menuI should take now? My primary doc is clueless, on Fridays, myrespirologist won't work. Appreciate any suggestions. Karin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Dear Karin, Regardless of being well during appointments with Dr. Balter and in spite of his being in high demand you deserve better care. I guess my doctors have me a bit spoiled, because the infectious disease specialists are always available even when my ID speciliats is not and my chart is available. Even in the middle of the night a family or ER doctor can contact them. Granted, the respirology dept in Halifax hasn't been helpful, but ID has and I think patients deserve this kind of care. Its what being a doctor is all about. Is the nearest hospital helpful? Perhaps try the local ER if your GP isn't available. I found the best care to be at Toronto General for inpatients when compared to St. Mike's. However the St. Mike's clinic is very helpful. Hugs:0) LizKarin wrote: I live in the burbs. To take a sputum sample to the downtown hospitallab takes 2 hours. Then what? I had asked Dr. Balter many times whatI should do between the twice yearly appointments. He said for myprimary doctor to call him. My family phys. does, but Dr. Balter isnever available. When Dr. Balter (Mt. Sinai) is not in the office, noone has access to my chart. I had planned to switch over to St.Mike's but haven't been well enougheven to bother to go there. It's 1 1/2 h by public transportation. Some years ago I happened to be getting sick while in the city, Iwalked into Dr.Balter's office, he said I should have called hedoesn't run a walk in clinic. I turned around to leave saying fine, Iwill go to the ER. He then said, o.k. sit down, I'll squeeze you in.He is a highly thought of respirologist. He is on the phonethroughout the day giving advice to other respirologists about hard totreat cases. He's a professor, lecturer at the U of T. He has afellowship of this and that, he had his resp. training in the US. Ialso found out that he's more interested in Asthma patients. When he sees me on scheduled appointments, I am fine, I do almost aswell as a healthy person on the spirometer I guess it's called. Mybronchiectasis is minimal as he says. But throughout the 40 years ithas spread from the lower lobe to the right middle lobe. I also have mitral valve prolapse due to untreated infections. Someitmes it's better to live in a smaller city, get better treatmentI think. I need to take antibiotics abt. 3 times a year. For 3 yearsnow it's been Avelox and Azithromycin, isn't there another antibioticI can take or is this it. Mycobacteria has never shown on mybronchoscopy, I have streptococcus pneumonia b.--that showed up inDec. 2005. I am part of a study, as if that's going to help me.Karin>> Dear Karin,> > Your respirologist should be following what bacteria is growing inyour sputum cultures. Its important in order to make treatmentdecisions when doctors are choosing antibiotics. My infectious diseasespecialist uses my previous cultures as a guideline. 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." The best gets better. See why everyone is raving about the All-new Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Dear Karin, Sandie gives you great advice. We care. You deserve so much better. There are better doctors. By better they keep their patient's interests at heart and are available for consultations even in between appointments. Hoping you are soon feeling much better! ) Hugs:0) LizSunniesback55@... wrote: Karin.. A doctor is only as good as he is to your well being and care. He maybe ' all that ' ..but it doesn't sound, to me, as if he has your BEST interest ..as his patient..in check. It sounds like you've got your plate full..but still, get a doctor who's gonna be there for you when you need him. What area do you live in? Sandie in MD The real art of conversation is to not only say the right thing in the right place, but also to leave unsaid the wrong thing at the tempting momentPre-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." All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Dear Karin, Its available in Canada, because I've had to take it before, but the doctors really need to be using your sputum cultures as a guideline. This is according to my ID specialist in Halifax. Hugs:0) LIzKarin wrote: thanks Marsha for replying, I wrote down the dox, I did takeErythromycin some 15 years ago, don't think they will work. I willcheck online if Dox is available in CanadaKarin>> I take Doxycyclin 3 days per week; the following week I takeErythromycin> for 3 days, then back to Doxy. the following week and so on alternating> drugs three days per week plus postural drainage every day. Mucous will> always be a problem with bronchiectasis. You have to get rid of it> otherwise it sits in little puddles in your lungs and infectionsdevelop.> > I have been on this regimen for 6 months and feel my illness is under> control now. Not to say I don't cough during the day as I do, but Idon't> have attacks like I used to have and I don't feel kind of sick allthe time> like I used to feel. But if I skip the postural drainage for a dayor two I> start to feel under the weather.> > Marsha/NYC>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." Now you can have a huge leap forward in email: get the new Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Hi, thanks to everyone re antibiotics. My doctors do rotate them, but I have become immune to all except the zithromax. Levaquin was another one I took some years ago. I will just have to wait and see till my Friday appointment witth the general practitioner. Here is a list of antibiotics I have tanken in the last 40 years. Tetracycline Gentamicin Ciprofloxacin Amoxicillin Ampicillin Erythromycin Azithromycin Clarithromycin Thanks, Karin > > Levaquin is just about the only antibiotic that works on my lung infections. I had one in January also with the horrible cough and digusting phlem. I am now free of both. > > Eileen_FL > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2007 Report Share Posted January 31, 2007 Karin: You mentioned that you are part of a study. What study and who is conducting it? Gwen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 >Hi Karin, welcome to tha " god don,t let this be an infection " clan. I am allergic to all meds oint blank, I have been on all you have, gentamiacin being the last, The silly nurse was told to give the last bag to me double slow cos , its something that cannot be hurried, people have heart attacks etc. She was running late on the ward and cut many corners, another sister came in a reminded her about my drip, and the correct drip rate etc, when the sister left the girl came over looked at her watch and said to me and another, god these things are slow, and Iv,e seen the do it a lot faster. She came over and began to fiddle, a youger nurse watched and reminded her what had been said, while the conversation took place, I wasn,t watching her, but as she left my room, I could feel my heart my head and then couldn,t move or speak, I was going to die. I was just so lucky the young nurse was empting a drainage bag, she saw that I had pulled the drip out of my arm and was passed out. I found myself being resusced, and with people trying everythin, I went down again and had to be zapped back. I had died. I was sent to Coronary care and kept 2 days more, visited by many staff asking heaps of ?????? I came home ill, and well since have had a string of new complaints. I had to have a big op, and the anaesthesist tried to get more info on what had happened a year before. Do you know nothing had been recorded in my chart, what caused me to die, nor that 3 witnessed me yank the whole lot down and out of my arm. I had my GP look to what they had sent him, and yes , I had died , eve of coming home, yes I had managed to get the drip out and that, it was me getting it out when I did, that really saved my life and the fact the Jnr nurse was in the room. No one would have known for hrs. I am allergic to all meds as I have stated, and so do the totally and all natural meds, and not another infection 12 years later. Of the lot I think its better to take a slower acting drug than a short quich dose if you hava high allergy rate. Sorry Gendamiacin would have been my choice, but only with me having total control. I do have total control now over all my probs, cos truly no one will risk anything, and neither will I. I have died 4 times since cos of allergies to the simplest of meds. So very vigilant with my total regime. Hope you can keep well, and that something like Sandie suggests can work for you. I do know the dilemma, I just am so positive now, I rarely worry or panic, unless I find out someone I have been with has something really bad, and then I doule all I do, naturally. Hugs Sandy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Hi , My bronchiectasis is mild in comparison to your health problems. Due to age, my other body parts are wearing out. More things to deal with. Just different. Here's the link about the latest about ER's in Ontario. I hate having to sit in an uncomfortable chair for 7, 8 or 9 hours. With 40 others who are mostly coughing, sneezing. I have a few matters to deal with in Toronto, when I turn 65, I will move to a smaller town 3 hours away from here. My Mt.Sinai respirologist is all for it, better air quality. He has two colleagues for me to see there. It's in borough,Ont. I was staying near borough, broke my wrist, waiting time in the little local hospital, 5 minutes. That would be unheard of in TO. http://www.cbc.ca/canada/toronto/story/2007/01/25/er-waits.html?ref=rss This will give you an update in re to ER's in TO, thanks for the many advice, I really appreciate the group Kain > > I live in the burbs. To take a sputum sample to the downtown hospital > lab takes 2 hours. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2007 Report Share Posted February 1, 2007 Hi Gwen, I had a bronchoscopy/lavage and a CT scan done around Dec. 2005. Shortly after I received a call from a I.D. employee asking for my permission to be included in a study. I said yes. The lab person said I would not hear from the lab again, I would not get a report or anything, she simply asked for my permission to release results from the above tests. She said the rsults of the bronchoscopy/lavage showed streptococcus pneumonaie bacteria. A 3 page report re the study was faxed to me to be signed. I later told my respirologist about it. He was furious. This lab person was not supposed to call me without his permission. He said he'd take care of it. The lab employee is no longer there. She was near retirement, I don't know whether she was transferred to a different department, ot fired? From what I understand the strep.p.b. is the same as the flesh eating disease or toxic shock syndrome as it's called now. I am petrified of infections. links to the study http://microbiology.mtsinai.on.ca/tibdn/education/links.asp http://microbiology.mtsinai.on.ca/tibdn/studies/retrogas.asp Karin Karin > > Karin: You mentioned that you are part of a study. What study and who is conducting it? > Gwen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 The first time I used it factive was like a miracle, I didn't cough for four days. The third time it didn't seem to work at all. The last time he gave me Cipro RonKarin wrote: Hi,I had a lung infection early January. For 10 days I went on Avelox. When finished, January 14, I was so sick, chestpain, coughing up weirdcoloured phlegm, the usual. Back to my general practitioner, heprescibed Azithromycin. Now that I am done with the azithromycin, Istill have a croopy kind of cough. Cough up weird stuff. Back to thedoctor this Friday. Any suggestion what antibiotics in the drug menuI should take now? My primary doc is clueless, on Fridays, myrespirologist won't work. Appreciate any suggestions. Karin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 If you have bronchiectasis it is important that you do cough otherwise the puddles of mucous sit in your lungs and you develop infections and perhaps pneumonias. Coughing is a fact of life with this disease. If I skip my postural drainage for a day or two I start to not feel well and cough much more than when I do keep the pd up. So my advice to you is to not try and stop the cough. Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 Hi, I have taken Cipro years ago, done with them. They work like sugar pills for me. I went on Avelox Jan 3 or 4th, chest infection still present Jan 14th, started Azythromycin. I visit my GP this morning, more Avelox. I coughed up nasty looking phlegm streaked w. blood last night. I visit my GP this morning. Avelox, again. I delivered a sputum sample to the hospital lab. Results won't be in till Monday af. What is a person to do till then? No choice, except for Avelox. I have a suspicion other than giving me leg cramps and general malaise, the Avelox no longer works for me either. I sent a question by email to the National Jewish H. Here's there reply. Dear Karin: There are a variety of antibiotics that MAY be helpful in bronchiectasis. Some like to rotate antibiotics empirically while others prefer to sample sputa to find out what types of microorganisms are present and what antibiotics are most active versus those bugs (that is my preference). Other things that can be done for bronchiectasis include devices like the Acapella Valve, inhaled hypertonic saline and inhaled steroids like Advair. You might try to see Dr. Ted Marras in Toronto; he's very knowledgeable in this area. Sincerely, D. Iseman, M.D. Professor of Medicine National Jewish Medical and Research Center -- Administrative Assistant to Daley, MD, Iseman, MD, and Reuben Cherniack, MD, Mycobacterial and Respiratory Infections Division National Jewish Medical and Research Center 1400 Street, J200-3 Denver, CO 80206 I made an appointment with the doctor recommended by National Jewish. Appointment is July 9th. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 I was dx'd with bronchiectasis in 1962. I am a firm believer of drinking lots of fluids and percussion. My son was shown how to do it when he was still in his teens. I have done my own percussion for years now, several times a day and subsequently cough up the phlegm, sputum. About twice a year I cough up blood mixed with sputum. The bloody sputum usually means I have a major infection going on. The cough that started in Janurary is a croupy cough, or like a whooping type of a cough, very unusual, not the type of cough when I cough up the phlegm. I still cough my regular cough to get the stuff up. Back on Avelox for the next 10 days, let's see. Karin > > If you have bronchiectasis it is important that you do cough otherwise the puddles of mucous sit in your lungs and you develop infections and perhaps pneumonias. Coughing is a fact of life with this disease. If I skip my postural drainage for a day or two I start to not feel well and cough much more than when I do keep the pd up. So my advice to you is to not try and stop the cough. > > Marsha > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 Karin, Please tell me what you mean by " percussion. " Marsha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 Dear Karin, The post from National Jewish is helpful, however so sorry you have to wait until July 9th for your appointment. It seems to take forever sometimes, I know and that's frustrating when we feel unwell now and need answers today. Is Dr. Marras a respirologist? Thinking of you, Hugs:0) LizPre-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." Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 Here are two links explaining about percussion. I live alone, I just bend over and pound the heck out of my chest. Seems to work, Karin http://www.njc.org/disease-info/diseases/bronchiectasis/treatment.aspx?#clear Techniques To Clear Mucus From the Lungs If you produce a large amount of mucus your healthcare provider may recommend techniques to help clear the mucus. * Devices such as the Acapella DMTM, Acapella Choice®, or Flutter Valve® may help clear mucus from your lungs. These are small devices you exhale into. * The Vest® is an inflatable vest that you put on. The vest shakes your chest to help clear the mucus. * Postural drainage and clapping, uses gravity to promote drainage of mucus from the lungs. Each technique can be prescribed and demonstrated by your healthcare provider. and http://medinfo.ufl.edu/year1/bcs/clist/chest.html#PROPER Percussion Proper Technique 1. Hyperextend the middle finger of one hand and place the distal interphalangeal joint firmly against the patient's chest. 2. With the end (not the pad) of the opposite middle finger, use a quick flick of the wrist to strike first finger. 3. Categorize what you hear as normal, dull, or hyperresonant. 4. Practice your technique until you can consistantly produce a " normal " percussion note on your (presumably normal) partner before you work with patients. > > Karin, > > Please tell me what you mean by " percussion. " > > Marsha > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2007 Report Share Posted February 2, 2007 Thank you so much Karin. Marsha Quote Link to comment Share on other sites More sharing options...
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