Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Dear Dorothy, My daughter (16) has bronchiectasis. Our experience has been that she has bloody sputum when there is infection present ( this does not mean that the cultures actually grow anything). It is always a disturbing experience but we can usually stop it with antibiotics. If one type doesn't work within 48 hours, we go to a stronger one. We have also used prednisone and have found that 7 days is not enough for her. I understand your hesitation in the continued use of prednisone but think that 2- 7 day rounds may not be enough to get the inflammation cleared up. The effects of prednisone are really more of a concern with higher doses and far more use than you have had. Your M.D. can reassure you of this. The most important thing is to get your present infection cleared up any way you can so that minimal scarring occurs. Unfortunalty it is sometimes a matter of finding the lesser of two evils. Try not to despair. I know that it is discouraging but we try to deal with this disease one infection at a time focusing on the now rather than worrying about later as it can be too overwhelming. Keep your chin up ! Lou Coughing up blood I would like to know if anyone else in the group has experiencedcoughing up bloody mucous on a regular basis. I have had bronchitectasissince 1990, for 16 years.About 3 months ago, I suddenly started coughing up bloody mucous on adaily basis. It usually happens in the morning, when I cough up stufffrom deep in my lungs, although sometimes it happens at night as well.Since then I have been on 3 courses of antibiotics and two courses ofprednisone for 7 days each. My pulmonary MD says it is a sign ofinfection. however, nothing grows out of my sputum cultures. I justcompleted another two weeks on Vantin coupled with a week on prednisone.While on them, the bleeding stopped. Then one day after I stopped bothmedications, the bleeding returned. I am so discouraged and reallydespairing. I cannot stay on antibiotics and prednisone indefinitely asyou all know the side effects of these medications.Has anyone else had this problem and if so what was done to treat it? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 i started using the saline in the nebulizer and its cut down on the amount of stuff in my lungs a great deal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Hi Dorothy, I, too was coughing up blood and it was very frightening. I got on this website and got some helpful suggestions. I bought a salt pipe from England and started taking fish oil capsules. Yesterday was the first day in months that I had coughed up blood and then only after a rather severe coughing attack. Like you, the minute I got off the AB's I would cough up more blood. Now I am not on ABs unless I have a flare up and my back and chest start hurting- my clear signs of problems., 55 bronch diagosed 2 years ago. 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 July 20, 2006 Report Share Posted July 20, 2006 Hi , What website did you go to? Can you suggest any? I would really appreciate it. Thanks, Lori "K. " wrote: Hi Dorothy, I, too was coughing up blood and it was very frightening. I got on this website and got some helpful suggestions. I bought a salt pipe from England and started taking fish oil capsules. Yesterday was the first day in months that I had coughed up blood and then only after a rather severe coughing attack. Like you, the minute I got off the AB's I would cough up more blood. Now I am not on ABs unless I have a flare up and my back and chest start hurting- my clear signs of problems., 55 bronch diagosed 2 years ago. 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 July 20, 2006 Report Share Posted July 20, 2006 Can you tell me more about the saline nebulizer? Thanks, Lou Re: Coughing up blood i started using the saline in the nebulizer and its cut down on the amount of stuff in my lungs a great deal Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Thank you to everyone who responded so far. I just wanted to add that having had bronchiectasis for 16 years of course I have coughed up a great deal of mucous on a daily basis. I use a steam inhaler in the mornings to help me get rid of the mucous, occasionally use a percussor. I also have a nebuilizer at home and have been doing albutrol inhalations for years. I have gotten saline to try in my nebulizer but haven't done it yet. I will definitely give it a try. However what is completely new and frightening for the past 3 months is this coughing up blood.Many times my cough has been WORSE than it is now, with more frequent coughing but no blood. And it seems from what I have heard that people do cough up blood sometimes with an infection but then it goes away, while mine has been almost daily except while I am taking antibiotics/prednisone. In the past, when i had a lung infection i would take antibiotics for 10 days and that would clear it up. Now when i stop, the bleeding returns one day later!!!!!!!! I have been on antibiotics almost the entire 3 months off and on. I saw my lung MD on Monday and she wants me to take another week of Prednisone, 10 mg twice daily. Also she wants to do another CT of my chest, to see if anything has changed since the last one which was just a couple months ago. She also ordered another sputum culture. I asked about a bronchoscopy but she said she didn't think it would show anything we don't already know, namely that my right lower lobe is where the bronch is the worst (I have it in both lungs). I also asked what about IV antibiotics and she said, only if my culture grew out something specific. But noting grew out of the last two. So.. if the prednisone doesn't work, it appears she is out of ideas and thats what is so scary to me. It seems this is a drastic change in my health with no way to fix it. I dread every time I cough, if you know what I mean. thank you again, Dorothy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Don't hesitate to use the saline in your nebulizer. It will help. Also, try putting a drop or two of Tea Tree Oil in your steam every morning. It will also help since it kills certain nasty bacteria which seem to be resistant to most antibiotics. Lee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2006 Report Share Posted July 20, 2006 Dear Dorothy, Has your doctor ordered cystic fibrosis sputum cultures? These cultures are treated differently than regular sputum cultures. They are allowed to grow out longer. In my opinion, cystic fibrosis sputum cultures should not be restricted to those with cystic fibrosis (CF), but should be offered to those with non-CF bronchiectasis, as well as other lung disorders involving infections. I think the regular sputums can and do miss bacteria. Before my doctors were doing cystic fibrosis sputum cultures often my results would come back with just normal lung flora, however ever since the CF sputums have been done interestingly, my lungs always grow out Staph a, Pseudomonas a, etc.... My doctors knew something was brewing before and not having incorrect information from regular sputum’s - these were lab errors was not helpful. Now my doctors are able to better see what might work for my lung infections. Nonetheless, just because a test comes back with non-sensitive beside a certain med. does not mean the antibiotics will not work. We do have a better picture of what is ongoing with my lungs and what it does is allow for better treatment. An AFB-stain for mycobacteriums might be helpful in your case. AFB-stains are necessary, because Mycobacterias are missed by routine and CF cultures. I had a non-TB - mycobacterium avuim complex. This required a full 18 months of treatment. MAC treatments ended up February. The meds. can be nasty, but left untreated the MAC in my case was causing increasing lung damage that was making me feel sick. Mycobacterias are increasingly being discovered as a cause of lung infections for those with cystic fibrosis and non-CF bronchiectasis. In Fact, mycobacterias can lead to the development of bronchiectasis. If your doctor has not already done, so it could be helpful to be tested for aspergillus, a fungus that can cause problems for some of us. My infectious disease specialist works with my family doctor to keep on top of treating these infections. I highly recommend being followed up by an ID specialist. Its the best decision that I’ve ever made with my lung care, as the respriologist didn’t seem to know quite as much about the infections and seemingly underestimated them. My ID specialist takes them seriously and treats me aggressively. He's an wonderfully compassionate doctor to boot. Not sure, what we would do without him. Hope this is helpful, Hugs:0) Liz in Nova Scotia, Canada e-mail:maryholt12@... or lungsformary@... Pre-Lung Transplant Journey - For updates please visit my carepage and leave a message. Thank you!:0) carepages.com name:maryelizabethholt ) " Miracles happen with love..... " ..... Please support your local children's hospital.... and " Give with all your might! " http://iwkfoundation.org/ )Visit.... Children's Miracle Network.... http://www.cmn.org/ ) " I don't give in, I don't give up, and I don't take no for an answer. " ~Doris ~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2006 Report Share Posted July 21, 2006 Hi Lori, Actually this group was the most helpful with links to the Jewish Hospital where I downloaded a form to keep track of my flareups. Perhaps another group member has that link. I also went onto to Mayo Clinic website and got more information about symptoms and treatments and then went there. 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 July 23, 2006 Report Share Posted July 23, 2006 http://www.njc.org/ National Jewish www.mayoclinic.com/ mayo clinic another good one is www.barnesjewish.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 http://www.nhlbi.nih.gov/health/public/lung/index.htm another good place Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Does anyone have the website to Jewish Hospital in Denver or the Mayo Clinic they could pass along that mentioned below? Thanks. Jan in St. Louis, MO > > Hi Lori, Actually this group was the most helpful with links to the Jewish Hospital where I downloaded a form to keep track of my flareups. Perhaps another group member has that link. I also went onto to Mayo Clinic website and got more information about symptoms and treatments and then went there. > > --------------------------------- > 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 July 24, 2006 Report Share Posted July 24, 2006 Thanks Vickie. I appreciate it. I did find the National Jewish site. I will try the others when I get home from work. Jan in St. Louis > > _http://www.nhlbi.nih.gov/health/public/lung/index.htm_ > (http://www.nhlbi.nih.gov/health/public/lung/index.htm) another good place > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Thanks =0) "K. " wrote: Hi Lori, Actually this group was the most helpful with links to the Jewish Hospital where I downloaded a form to keep track of my flareups. Perhaps another group member has that link. I also went onto to Mayo Clinic website and got more information about symptoms and treatments and then went there. 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...
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