Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

@navylady It is true. You have to be TENACIOUS with the insurance companies to get them to allow you to go to places like Mayo. You need to stress the urgency, the fact that it is an orphan disease that little is known about it, and you can remind them that Mayo is a non-profit organization, therefore; the costs will be very reasonable. In fact, lower than private practice medical business. The squeeky wheel gets the oil!

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@ameliar hi I was recently diagnosed after coughing for maybe 8-9 mos or so .Finally went to a Pulmonoligist after seeing a ENT and taking antibiotics as well as an antihistamine .But the pulmonologist gave me a breathing test and I coughed up spectrum and they cultured it .Apoears I have MAC not taking anything yet hope never I stopped coughing and feel great .Where do you live ? It’s pretty scary hope I don’t cough it was loose I also had it after I had the flu strange .Its good to hear others like me but I intend to see a infectious disease and pulmonologist to compare and ask them if I need to take anything do I don’t get it back as precaution .Lets keep in touch you can PM me anytime

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I am an otherwise healthy 71 year old female recently diagnosed with Bronchiectasis. I have minimal shortness of breath and cough very little. I had pneumonia as a child, then not again until 2016. I did have Bronchitis several times in the 1990"s after moving to Virginia. I took allergy medicine for years and stayed healthy and then had pneumonia in 2016 and 2 more times since then. I found a great pulmonary doctor that I feel great about., but I haven't heard back from the sputum samples done 5 weeks ago. Is this pretty normal. They said one test was perfectly normal, but nothing from the other 2. I am optimistic and plan to do everything possible to stay healthy, but I am a bit freaked out about getting around crowds. I work full time and around the public as well as co workers. I wonder how those of you diagnosed with this are managing your health. Thank you for any advice.

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@kksells

I am an otherwise healthy 71 year old female recently diagnosed with Bronchiectasis. I have minimal shortness of breath and cough very little. I had pneumonia as a child, then not again until 2016. I did have Bronchitis several times in the 1990"s after moving to Virginia. I took allergy medicine for years and stayed healthy and then had pneumonia in 2016 and 2 more times since then. I found a great pulmonary doctor that I feel great about., but I haven't heard back from the sputum samples done 5 weeks ago. Is this pretty normal. They said one test was perfectly normal, but nothing from the other 2. I am optimistic and plan to do everything possible to stay healthy, but I am a bit freaked out about getting around crowds. I work full time and around the public as well as co workers. I wonder how those of you diagnosed with this are managing your health. Thank you for any advice.

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Hi @kksells and welcome to the MAC group on Connect. You'll notice that I moved your message to this existing discussion about being newly diagnosed with bronchiectasis where you'll meet other members like @windwalker @tdrell @navylady @egayle187 @auntnanny and others, some new to the diagnosis; others not. Click VIEW & REPLY in the email notification to get to the entire discussion. I also encourage to browse through the other discussions in the MAC group. There's a wealth of information out there.

By moving your message, I unfortunately lost the image of yourself that you posted. I hope you'll post it again in your profile. Here's how to update and edit your profile along with other tips about using the site: https://connect.mayoclinic.org/get-started-on-connect/

Your concerns about being around crowds and the public are not uncommon. I'll turn it over to the members of the group to tell how they manage their health.

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kksells I'm 77 and diagnosed 3 years ago at Rochester Mayo's with bronchiectasis. I had severe coughing with tons of thick sputum. Had been diagnosed by several doctors in my area with asthma, various things — none of which was right. Like you, I breathe well (for the time being anyway). I do sputum tests when the coughing is consistent (and believe me, it can become so difficult to keep coughing all night long). The analysis on the sputum will give your physician numerous antibiotics that will work. I usually take whichever the doctor prescribes for a couple of weeks and then it will dissipate for a few weeks/months. But, I will always have it. It's not curable. Seems to be manageable with the testing. I don't curtail any activities or socialization unless I'm having a "flare"…… Pulmonologist told me it is not contagious. I would not knowingly be around someone with a cold or flu-like symptoms but just doing the things I would normally do and paying attention to someone else who might be sneezing or coughing. If I'm the one coughing I don't think anyone would want to be around me and I try to stay away the best I can until it subsides. It sounds like you are going to be fine and I think you will be able to live a very normal life.

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@kksells Welcome to the forum. I've gained both support and valuable information from this compassionate group. For myself, (diagnosed with bronchiectasis in 1997 at age 55, and diagnosed with MAC in 2007) keeping free of infection has been my biggest challenge. I haven't found much help from doctors when it comes to this. They've just been good about prescribing antibiotics once I get sick. Independently, I've tried lots of over the counter cold prevention products and lots of supplements, most of which have not offered much protection. Until recently I was averaging one infection about every 3 months. The most effective treatment for me has been the use of a nebulizer to inhale 4ml of 7% sodium chloride solution twice a day (recommended by my current pulmonologist). Since I began this practice about 5 months ago, I haven't been sick. (I'm knocking on wood as I write this.) In addition to the nebulizing I take a strong probiotic and a strong multivitamin daily (along with an herbal capsule called Winter Well when I'm going to be in crowds or when I'm going to be on an airplane). I've also learned that I can't afford to be polite when I'm around someone with a cold. I need to get away quickly, even if it's one of our most beloved grandchildren. I just explain to, or remind, whoever it is that I have a lung disease and I just can't risk getting a cold, which, for me usually leads to infection. I hope this helps.

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my sputum samples took 8 wks. MAC takes this long.

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Mayo Clinic documentary is on right now! On PBS.

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windwalker and all My problem is bronchiectasis and pseudomonas……. am wondering if those of you with the same bacterial infection would share which antibiotic seems to rid this pesky ongoing problem. The sputum cultures come back with several recommendations and Mayo doctor usually goes with cipro ….. and then perhaps Levaquin. Has anyone had really good luck with another antibiotic? Thanks much for any help

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@auntnanny

windwalker and all My problem is bronchiectasis and pseudomonas……. am wondering if those of you with the same bacterial infection would share which antibiotic seems to rid this pesky ongoing problem. The sputum cultures come back with several recommendations and Mayo doctor usually goes with cipro ….. and then perhaps Levaquin. Has anyone had really good luck with another antibiotic? Thanks much for any help

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Hi, I was reading your post and wanted to tell you what I’m talking. I did use the 3 antibiotics before but I am now doing saline and that’s helping to clean my mucus. But I’m also using inhaled Tobramycin in my nebulizer. I have only been on this antibiotics for 10 days and I believe this is a great way cause I can’t swallow pills, I’m always having to crush them. I also have pseudomonas and bronchiectasis. Hope this helps. Rita.

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@auntnanny

windwalker and all My problem is bronchiectasis and pseudomonas……. am wondering if those of you with the same bacterial infection would share which antibiotic seems to rid this pesky ongoing problem. The sputum cultures come back with several recommendations and Mayo doctor usually goes with cipro ….. and then perhaps Levaquin. Has anyone had really good luck with another antibiotic? Thanks much for any help

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@auntnanny I am on the same regimen as @america. The tobramycin knocked it out of me in 2016. I have been on the tobramycin every other month since then. I have 'known' you for awhile now; a year or more. I have seen you text that you are on antibiotics for a week or two feel better, then off for several months, then sick again, then on antibiotics for a week or two…..short runs om antibiotics don't seem to be working for you. Like me, you may need to be on them for an indefinite time. A few weeks here and there is not enough to beat it down.

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@windwalker

Mayo Clinic documentary is on right now! On PBS.

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We enjoyed watching that documentary with Mayo Clinic! Amazing!!

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