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.

@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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A few years ago, before getting this diagnosis, I was put on levaquin.. cough went away for 2.5 years!! Be careful tho, levaquin is known to cause achilles tendons to tear.

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I had an ultra sound that showed Bronchiectasis, my doctor ordered blood tests that all show normal. I'm so fatigued and dizzy, not sure if it's from bronchiectasis or something else going on. Five years ago I had breast cancer with chemo and radiation. I still have a couple of pulmonary tests that might show a reason. I don't even know what bronchiectasis is. All new to me.

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@jweisser

I had an ultra sound that showed Bronchiectasis, my doctor ordered blood tests that all show normal. I'm so fatigued and dizzy, not sure if it's from bronchiectasis or something else going on. Five years ago I had breast cancer with chemo and radiation. I still have a couple of pulmonary tests that might show a reason. I don't even know what bronchiectasis is. All new to me.

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@jweisser welcome to Connect. I moved your message to this existing discussion by the same name so that you can meet other members newly diagnosed with bronchiectasis as well as those who have been there. Click VIEW. REPLY in the email notification to read past posts. There is a great wealth of information shared by extremely knowledgeable and supportive members in this group. I hope you’ll read through some of them. You may never know why you got bronchiectasis, but you will learn how you can manage the condition. Please ask questions and then ask some more. We’re listening.

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@jweisser

I had an ultra sound that showed Bronchiectasis, my doctor ordered blood tests that all show normal. I'm so fatigued and dizzy, not sure if it's from bronchiectasis or something else going on. Five years ago I had breast cancer with chemo and radiation. I still have a couple of pulmonary tests that might show a reason. I don't even know what bronchiectasis is. All new to me.

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@jweisser Thank you for posting. I was diagnosed at Mayo's Rochester three years ago. I was terribly ill before the diagnosis and had eventually lost a lot of weight. Had been to 7 different specialists and none came up with the problem. Mayo's found it in a couple of hours. Your note caught my eye because I, too, had never heard of bronchiectasis and apparently that showed on my face when they told me. So, they went on to say "You do not have cancer — you have bronchiectasis. It is not curable but we can manage it". And…. they have. I wasn't aware of ultra sound being used to diagnose it. That was news to me (but of course, I don't know much). I hope you have a doctor with good knowledge of this disease and if so, I believe you will soon be feeling much better. Do post again so we'll know how you are doing and many of the patients on this site are extremely helpful. They have had great experience and will surely help you through this.

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Dear friends i am here first time i dont know how to start but i am very sick and diagnosed significant tracheobronchomalicia( week windpipe anyone facing same problem please share with me hope you all feel better

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@colleenyoung

@jweisser welcome to Connect. I moved your message to this existing discussion by the same name so that you can meet other members newly diagnosed with bronchiectasis as well as those who have been there. Click VIEW. REPLY in the email notification to read past posts. There is a great wealth of information shared by extremely knowledgeable and supportive members in this group. I hope you’ll read through some of them. You may never know why you got bronchiectasis, but you will learn how you can manage the condition. Please ask questions and then ask some more. We’re listening.

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I'm mostly confused if I actually do have Bronchiectasis. The blood tests all came back normal, the only thing that suggested Bronchiectasis was the chest ultrasound. I have most of the symptoms but not the weight loss. I'm in denial until after the two pulmonary tests. My main problem is the fatigue and coughing. I will keep following your messages and see what I can learn.

I'm slow to learn how to post messages and hope I'm not messing up anything.

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@auntnanny

@jweisser Thank you for posting. I was diagnosed at Mayo's Rochester three years ago. I was terribly ill before the diagnosis and had eventually lost a lot of weight. Had been to 7 different specialists and none came up with the problem. Mayo's found it in a couple of hours. Your note caught my eye because I, too, had never heard of bronchiectasis and apparently that showed on my face when they told me. So, they went on to say "You do not have cancer — you have bronchiectasis. It is not curable but we can manage it". And…. they have. I wasn't aware of ultra sound being used to diagnose it. That was news to me (but of course, I don't know much). I hope you have a doctor with good knowledge of this disease and if so, I believe you will soon be feeling much better. Do post again so we'll know how you are doing and many of the patients on this site are extremely helpful. They have had great experience and will surely help you through this.

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auntnanny, I'm still reluctant to accept this quick diagnosis, I will wait for the two pulmonary test later in the week. I don't know how this is usually diagnosed but I should have more info later. As yet I don't have a pulmonologist, this is all through my PA, who is very good and working through all the tests. I'm thinking this might be from chemo and radiation treatment. My throat always feel full like pressure and into my head. I just feel there is something else. However years ago I was also exposed to asbestos, because my husband worked in the plumbing business for our Veterans Hospital. He ground asbestos covering from pipes in a hammer mill, mixed it with water and put it back on the pipes to insulate. He came home with this asbestos dust on his clothes and I did the laundry. He has asbestosis and I keep worrying about that. But this was 45 years ago before they knew it was dangerous. I will know more after my next two tests. Thanks

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@jweisser

I'm mostly confused if I actually do have Bronchiectasis. The blood tests all came back normal, the only thing that suggested Bronchiectasis was the chest ultrasound. I have most of the symptoms but not the weight loss. I'm in denial until after the two pulmonary tests. My main problem is the fatigue and coughing. I will keep following your messages and see what I can learn.

I'm slow to learn how to post messages and hope I'm not messing up anything.

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@jweisser I have bronchiectasis also. I was diagnosed in 2016, (it showed on a CT scan). I don’t think any of my doctors mentioned anything about it showing up in blood work. That’s when I was also diagnosed with MAC/MAI. I don’t have any symptoms either. I believe the symptom of bronchiectasis is shortness of breath. The weight loss comes from the MAC infection along with night sweats, fatigue and I think fever. The bronchiectasis causes an ideal breeding ground for many types of lung infections because our lungs don’t clear themselves of mucus. That’s why I use the Aerobika, 50 breaths, twice a day, with huff coughing. Others use the nebulized saline. I am not an expert on ANY of this, and I’m still trying to figure it all out myself. But you will definitely get lots of info, help and good advice on this forum.

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jweisser.….. My bronchiectasis was diagnosed from a cat scan of lungs and confirmed with sputum test. The sputum test tells which bacteria is there at the time and therefore, they know which antibiotic to prescribe. When the bacteria is killed, you still have bronchiectasis because that is the condition of your lungs but you will not be ill when the infection is gone. (My experience). I continue to have flares — often at first but as time as gone on the flares are now months apart instead of weeks. If you can get to a Mayo's anywhere, it will be your best bet. We drove 10 hours to get there and worth every mile of the trip. The pulmonologist there to whom I was assigned is Dr. Moua (Rochester)…… he continues to keep track of me. I can write him a note any time or call him. I just write because he is very busy. He answers right away. I send him results of sputum tests done at a local lab and he prescribes from that. I've never had to go back to see him. I have medicare and blue cross/blue shield and I've never paid a penny for anything. There are no charges for his continuous care. It's a great place. I can't say enough good. I was very ill when I went — very hard coughing night and day with no let-up. I'm so grateful.

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navylady —— get to Mayo's in Florida. They will be able to diagnose you quickly and you will be given the proper antibiotics to rid the infection. Certainly Advair is not the answer. Don't wait….. call them. You will feel better soon.

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@jweisser

I'm mostly confused if I actually do have Bronchiectasis. The blood tests all came back normal, the only thing that suggested Bronchiectasis was the chest ultrasound. I have most of the symptoms but not the weight loss. I'm in denial until after the two pulmonary tests. My main problem is the fatigue and coughing. I will keep following your messages and see what I can learn.

I'm slow to learn how to post messages and hope I'm not messing up anything.

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2jweisser It took several years…maybe 5 before the weight loss kicked in. I've gone from 126 to 102 pounds and find it very hard to gain.

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@jweisser

I had an ultra sound that showed Bronchiectasis, my doctor ordered blood tests that all show normal. I'm so fatigued and dizzy, not sure if it's from bronchiectasis or something else going on. Five years ago I had breast cancer with chemo and radiation. I still have a couple of pulmonary tests that might show a reason. I don't even know what bronchiectasis is. All new to me.

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@jweisser Most of, if not all, people in this discussion group have bronchiectasis. Some have more serious symptoms than others. I understand how scary it can be when you don't know anything about it. Here are links to some websites that provide information on bronchiectasis. In the mean time, you'll find a lot of helpful ideas, advice, tips, etc. on this site to help you manage this disease.
https://www.thoracic.org/patients/patient-resources/resources/bronchiectasis-pt1.pdf
http://www.lung.org/lung-health-and-diseases/lung-disease-lookup/bronchiectasis/symptoms-causes-risk-factors.html
https://www.nhlbi.nih.gov/health-topics/bronchiectasis
Come to this site often and feel free to ask questions. You'll get a lot of help and emotional support from it. Good luck.

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