Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 To all the new members...Welcome! Do not be discouraged if you are going through a bad period of infection or have only recently been diagnosed. If you have been diagnosed with bronchiectasis you should know that everyone's experience is different and unique. Much depends on the extent of the bronchiectasis and the area of the lung that is affected. Sometimes the bronchial tubes are only slightly dilated and the bronchiectasis is only in one lung. Often, if the disease has been present for many years the tubes do tend to sag (saccular) in which case postural drainage and appropriate positioning of the body will help to drain them. This is the most important method of limiting your flare -ups of infection .It is more difficult to clear out the mucus if you are also coping with asthma or have continuous allergies. Both these conditions cause the mucous lining of the tubes to thicken or swell causing more blockage and therefore more infection. There is medication available to help thin out the mucus .You can see how bronchiectasis develops over the years. Learn everything you can about how best to care for yourself. It is a lifestyle of drinking more fluids than the average person does. Doing twice daily postural drainage. Getting the right antibiotic when an infection flares up. Eating a diet high in antioxidents. Avoiding anyone with a cold or flu.(of course!) Sinus infections should be treated promptly to limit the spread of infection down to the bronchial tubes. There are many people on this website that will add their advice to what I have written and pass along some good health tips. I hope you will maintain a positive attitude. I have had bronchiectasis most of my life and just regard this illness as a nuisance. All the best! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 , What a wealth of helpful information to you give. I might mention that the inhaled medication that I use in my nebulizer is Acetylcysteine 10% or it is also called Muco-Mist. I use it with Xopenex since I have a heart condition that does not permit the use of Albuterol. While I am doing my treatments with the nebulizer, I use the vest that shakes my chest and loosens the mucus. I wait 30 minutes and then follow up with postural drainage. You are right about the asthma, it does tend to complicate things. Normally it is not much of a problem for me now, except recently we had some high winds and temperature fluctuations in the area where I live, and that can contribute to a bout with asthma. A sputum culture can be done to determine the type of bacteria, and the appropriate antibiotic needed. I am infected with pseudomonas which is most responsive to Cipro or the other antibiotics in the Quinoline family of antibiotics. I am allergic to Cipro so the next choice is Tobramycin. That is why I am now on inhaled Tobramycin the last two weeks of each month following the other breathing medications that I mentioned above. I have been in pulmonary rehabilitation maintenance off and on, and I find that it has been most helpful especially the upper body light weight machines. I have a treadmill and Total Gym at home, but the support from the other patients and respiratory therapists where I go really is helpful too. Take care, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 God Bless You, too, Margaret. Stay in touch--you will learn much, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hi Judy, We are almost neighbors. I have not been in your immediate area, but Texas is a big state compared to the other states where I have lived in the Midwest. When I lived on the farm, we had goats. My mother drank the milk. My cousin even took her when she was in the nursing home. Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Judy, I forgot to mention that I live in Round Rock which has really grown since we moved here. Welcome to this wonderful group, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hi Norma: Thank you for all the information. I am 62 and was diagnosed in 1975 at which time I had the lower left lobe removed. I'm finding as I get older the infections are coming more often and lasting longer and nothing really seems to lessen the effects. Usually I can't get out of bed for a very long time which weakens me even more. I appreciate your sharing and God Bless. Margaret > Hi Margaret, > > Welcome to this group. You will get information and support here. I am 69 > years old and was diagnosed with bronchiectasis three years ago. I started > having bad sinus infections about seven years before that. I asked my primary > care doctor to refer me to an allergist. The allergist said that I was allergic > to mold and dust mites. I started allergy shots, and they have helped some > with the allergies. He prescribed medications to treat my allergies. Every > time I would go to see the allergist or primary care doctor when I felt achy, > bad headache, coughing etc., they would always ask, " What antibiotic can you > take? " I said, " I can take all of them, but every few months I am sick again. " > Then I was diagnosed with asthma and bronchitis. My doctors all said that > after I had sinus surgery, then my lung problems would be better. I asked my > primary care doctor if he would refer me to a pulmonary doctor. He would say, > " No, not yet. " After two bouts of walking pneumonia within six months, I had a > CT scan and was finally sent to a pulmonary doctor. He performed a > bronchoscopy and then the diagnosis of bronchiectasis was confirmed. Finally I had the > first sinus surgery. The ear, nose and throat surgeon cultured my sinuses > after the surgery and the bacteria, pseudomonas, was colonized in my sinuses. He > sent me to an infectious disease doctor, and she said that a colonization of > a bacteria meant that it was only present but not an infection at that time. > Six months later, the ear, nose and throat surgeon had to go back in and > reduce the size of one my turbinates during surgery. At that time the pseudomonas > bacteria was an infection. I have been fighting this battle ever since with > hospitalizations and now with an inhaled antibiotic the last two weeks of each > month. I use a nebulizer and a machine called the vest. The website is: > www.thevest.com. > > The National Jewish Research Medical Center in Denver is a good website to > check out. I believe it is www.nationaljewish.org. I am sure that there are > others who can give you more information about the differences between and > bronchitis and bronchiectasis. I am rather shaky tonight as I am on prednisone for > acute asthma, and it affects my heart condition and I cannot sleep. I am > also on an antibiotic for bronchitis (or possibly bronchiectasis). The > prednisone gives me bad side effects, so please excuse any typos, etc. > > Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Thank you for your encouragement. I too have had bronchiectasis most of my adult life, and you're right, it is a nuisance!! But the info on drainage is helpful and I will be trying that asap. I'm limited to antibiotics due to allergic reactions to pennicillin and avalox, so I'm usually given z-pack or biactin but I don't think they help. After 3 mo's on these, I'm still coughing up yellow mucous every morning and low grade temp in the afternoon. Thanks again for your kind words. Margaret > To all the new members...Welcome! Do not be discouraged if you are going > through a bad period of infection or have only recently been diagnosed. If you > have been diagnosed with bronchiectasis you should know that everyone's > experience is different and unique. Much depends on the extent of the bronchiectasis > and the area of the lung that is affected. Sometimes the bronchial tubes are > only slightly dilated and the bronchiectasis is only in one lung. Often, if the > disease has been present for many years the tubes do tend to sag (saccular) > in which case postural drainage and appropriate positioning of the body will > help to drain them. This is the most important method of limiting your flare > -ups of infection .It is more difficult to clear out the mucus if you are also > coping with asthma or have continuous allergies. Both these conditions cause the > mucous lining of the tubes to thicken or swell causing more blockage and > therefore more infection. There is medication available to help thin out the mucus > .You can see how bronchiectasis develops over the years. > Learn everything you can about how best to care for yourself. It is a > lifestyle of drinking more fluids than the average person does. Doing twice daily > postural drainage. Getting the right antibiotic when an infection flares up. > Eating a diet high in antioxidents. Avoiding anyone with a cold or flu.(of > course!) Sinus infections should be treated promptly to limit the spread of infection > down to the bronchial tubes. There are many people on this website that will > add their advice to what I have written and pass along some good health tips. > I hope you will maintain a positive attitude. I have had bronchiectasis > most of my life and just regard this illness as a nuisance. All the best! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 We are almost neighbors. I have not been in your immediate area, but Texas is a big state compared to the other states where I have lived in the Midwest. When I lived on the farm, we had goats. My mother drank the milk. My cousin even took her when she was in the nursing home. Norma Yes Norma, we are almost neighbors. I know exactly where Round rock is. and we also have milkers ( La Manchas )to supplement any bottle babies we have each season. We raise Boer goats. If anyone would like to see them, you can click on to my web page under my signature. We also drink the goat milk......its delicious !!!! Judy and Dave Muska Registered Quality Boer Goats Registered LGD's Central Texas bouncinghoofs.com/LazyJ.html Goat Emergency http:goat911.com " Boer, Kiko, Spanish, FAINTER, goat . . . no matter what you call it, it's the HEALTHY red meat. " "The Boer Goat...the Arnold Schwarzenegger of the goat world " tm Pro-God Pro-American Pro.Bush Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Judy, My problems are not from smoking—I’ve never smoked in my life. No one has been able to tell me why my infections started. I guess it’s just one of the many mysteries of life. Remember that all questions are good questions. We don’t learn anything unless we ask and there always seems to be someone with insight into different aspects of this disease. Barb --Original Message----- From: judymuska@... Sent: Monday, December 15, 2003 7:22 PM To: bronchiectasis Subject: Re: Information In a message dated 12/15/2003 7:11:14 PM Central Standard Time, blerdmann@... writes: My understanding of bronchitis is that it is an inflammation of the airways leading to the lungs. Bronchiectasis is damaged airways in the lungs which allow bacteria to grow and make life absolutely miserable for us. I wish that I knew how to fight the constant infections. Barb.......I'm sorry I'm asking so many questions, but this is so new to me. I don't know if I have bronchitis or bronchiectasis......all I know is I nearly died 3 weeks ago, from not being able to breath. I stayed in the hospital on steroids and antibiotics for 4 days. I have been home now almost 3 weeks. I immediately stopped smoking, and have not had to use my nebulizer . My dr. said only use it if I need it. I live in fear my breath will just stop again. so I don't really know what I have. Did you smoke .......do you feel smoking is the main cause of all this ? Judy and Dave Muska Registered Quality Boer Goats Registered LGD's Central Texas bouncinghoofs.com/LazyJ.html Goat Emergency http:goat911.com " Boer, Kiko, Spanish, FAINTER, goat . . . no matter what you call it, it's the HEALTHY red meat. " " The Boer Goat...the Arnold Schwarzenegger of the goat world " tm Pro-God Pro-American Pro.Bush Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Judy, I do not know what kinds of goats we had on the farm. All I remember are the cute white twin baby goats that we had. I will check out your website for pictures of your goats. When you were in the hospital did they give you prednisone? I am going off of the six-day 21 tablet dose pak due to asthma and the windy days last week. My allergist has always said that my allergies are not bad. I have been on shots for a few years and am on maintenance shots now once a month. Some people with bronchiectasis also have asthma and sinusitis along with it. I suppose I am one of those who got it all. Since the second day after I started this medication I have not been able to sleep, my stomach hurts and I am very nervous and jittery since I have a heart condition. I have had this medication twice in the past, and hope I do not have to take it again. It bothers some people, but not others. When you mentioned something about smoking, I forgot to tell you that I smoked socially only during my college years. I never learned how to inhale, did not enjoy it and thought of better uses for my money. What I have read about bronchiectasis is that it does not cause it, but it best to stop it with any lung problems. Take care, Norma .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Norma,I think it is great that you get help from the Inhalation therapists . I also use the Vest twice daily combined with Mucomyst nebulising. It is difficult for me to estimate how effective this treatment is. I have been on this regimen now for seven months. But I can say that I have not had a flare-up for four months and am coughing up very little mucus these days. Plus I am feeling better that I have felt for several months. However, the colder weather that we are having here in Ca. is always beneficial for me and I usually feel better anyway, so who knows? Also I have not coughed up blood for several weeks now. How long have you been using the Vest and do you think it has improved your condition? . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 , I have heard so many times in this group that this disease is just a nuisance. I cannot go to church, to the stores, travel, am sick almost constantly and it seems more than that to me. When my pulmonary doctor first diagnosed me with bronchiectasis, I asked him what bronchiectasis was. He literally threw a chronic bronchitis brochure at me since they did not have one on bronchiectasis and said, "Oh, it is just a nuisance." Then I called my state's American Lung Association office and talked to the director of medical affairs. She gave me a lot of literature on this disease and still communicates with me via email. She told me that it was a lifestyle changing disease. I realize, like you said, that we all have this in different degrees of severity. I tried to get disability from the state health department where I worked, but my pulmonologist said that I was not disabled with this disease although he asked me to use a nebulizer four times a day. Where can anyone work who can do two breathing treatments at work during the day? I certainly could not do that at my job. I am sure that in many instances this disease is hard to diagnose and as I have read in many emails, a lot of us were treated for allergies, asthma and sinusitis when this disease also existed with it. I hope this makes sense. I am still going off the prednisone, and we are having a windy cold day here, so my chest is getting tight--time for another breathing treatment and antibiotic. As always, I appreciate your knowledge of this disease and support. I am sorry to be a complainer again today. Best Regards, Norma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 , thank you for your wise words, I was still forming my response to the newcomers and those struggling, in my head, and it hadn't reached the computer keys yet. Then ~ I read your post.....and there it is folks, has spoken and what she says is exactly how it is for bronch. sufferers. -wife/caregiver to ZZ Alpha and bronchiectasis-Vancouver Island,BC,Canada ^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^BCSCOFFMAN@... wrote: To all the new members...Welcome! Do not be discouraged if you are going through a bad period of infection or have only recently been diagnosed. If you have been diagnosed with bronchiectasis you should know that everyone's experience is different and unique. Much depends on the extent of the bronchiectasis and the area of the lung that is affected. Sometimes the bronchial tubes are only slightly dilated and the bronchiectasis is only in one lung. Often, if the disease has been present for many years the tubes do tend to sag (saccular) in which case postural drainage and appropriate positioning of the body will help to drain them. This is the most important method of limiting your flare -ups of infection .It is more difficult to clear out the mucus if you are also coping with asthma or have continuous allergies. Both these conditions cause the mucous lining of the tubes to thicken or swell causing more blockage and therefore more infection. There is medication available to help thin out the mucus .You can see how bronchiectasis develops over the years.Learn everything you can about how best to care for yourself. It is a lifestyle of drinking more fluids than the average person does. Doing twice daily postural drainage. Getting the right antibiotic when an infection flares up. Eating a diet high in antioxidents. Avoiding anyone with a cold or flu.(of course!) Sinus infections should be treated promptly to limit the spread of infection down to the bronchial tubes. There are many people on this website that will add their advice to what I have written and pass along some good health tips. I hope you will maintain a positive attitude. I have had bronchiectasis most of my life and just regard this illness as a nuisance. All the best! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Margaret, have you had your sputum cultured? This is very important so the doctor can know exactly which antibiotic is going to work for you......even if you have problems with some. There is usually a choice of drugs that the lab gives to the doctor with the culture result. has a standing order at the lab and a supply of sterile containers at home to use for sputum samples. when he's concerned about a change in the sputum colour or amount he drops off a sample at the lab. He gets a call from the doctor if it needs to be treated. dwellingplaceministries wrote: Thank you for your encouragement. I too have had bronchiectasis most of my adult life, and you're right, it is a nuisance!! But the info on drainage is helpful and I will be trying that asap. I'm limited to antibiotics due to allergic reactions to pennicillin and avalox, so I'm usually given z-pack or biactin but I don't think they help. After 3 mo's on these, I'm still coughing up yellow mucous every morning and low grade temp in the afternoon.Thanks again for your kind words. Margaret> To all the new members...Welcome! Do not be discouraged if you are going > through a bad period of infection or have only recently been diagnosed. If you > have been diagnosed with bronchiectasis you should know that everyone's > experience is different and unique. Much depends on the extent of the bronchiectasis > and the area of the lung that is affected. Sometimes the bronchial tubes are > only slightly dilated and the bronchiectasis is only in one lung. Often, if the > disease has been present for many years the tubes do tend to sag (saccular) > in which case postural drainage and appropriate positioning of the body will > help to drain them. This is the most important method of limiting your flare > -ups of infection .It is more difficult to clear out the mucus if you are also > coping with asthma or have continuous allergies. Both these conditions cause the > mucous lining of the tubes to thicken or swell causing more blockage and > therefore more infection. There is medication available to help thin out the mucus > .You can see how bronchiectasis develops over the years.> Learn everything you can about how best to care for yourself. It is a > lifestyle of drinking more fluids than the average person does. Doing twice daily > postural drainage. Getting the right antibiotic when an infection flares up. > Eating a diet high in antioxidents. Avoiding anyone with a cold or flu.(of > course!) Sinus infections should be treated promptly to limit the spread of infection > down to the bronchial tubes. There are many people on this website that will > add their advice to what I have written and pass along some good health tips. > I hope you will maintain a positive attitude. I have had bronchiectasis > most of my life and just regard this illness as a nuisance. All the best! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 > My problems are not from smoking-I've never smoked in my life. No one has been able to tell me why my infections started. I guess it's just one of the many mysteries of life. Remember that all questions are good questions. We don't learn anything unless we ask and there always seems to be someone with insight into different aspects of this disease. > > Barb Barb- I have had bronch since I was six, and I am now 31. I was just diagnosed a year and a half ago with a Primary immune Deficiency (PID), which is how I ended up with the bronch- repeated respiratory infections that weren't treated aggressively enough when I was a young child essentially damaged my lungs. Anyway, if you have no other possible cause for yours, I would suggest that you get tested for PID's by an immunologist. There's over 80 different kinds, and knowing if you have one might help you to be treated more efficiently. Karin Quote Link to comment Share on other sites More sharing options...
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