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.

@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

@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.

Liked by Dee

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.

Liked by Dee, noahs

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.

Liked by Dee

@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.

Liked by Dee

@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.

Liked by Dee

@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 You might find this website helpful. https://www.bronchiectasisandntminitiative.org/Bronchiectasis/Bronchiectasis-Resources/Basics-Of-Bronchiectasis?utm_source=BronchandNTM+E-Blast10.2018&utm_campaign=+e-Newsletter&utm_medium=email

Liked by Dee, alleycatkate, noahs

@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 this forum. You'll find information and support here that is not available anywhere else in such a convenient package. I was diagnosed with bronchiectasis in 1997 — had never heard of it. It's taken many years and lots of independent research and lots of personal experience for me to feel that I know what it is, what it means in my life and in my future, and how to best protect myself. People around me have no conception of the condition, and I've had to work with a couple of pulmonologists who understood it less than I do! Fortunately, I'm with a knowledgeable, proactive pulmonologist now, but you can't assume that "the doctor knows." Arm yourself with information. Plenty of it can be found right here. You will be empowered by it.

Liked by Dee

@ginak …Thanks for posting on bronchiectasis….Very informative. I just found that I have bronchiectasis along with my MAC after having an updated catscan done in prep for a Mayo Clinic second opinion appointment. (My insurance does not typically cover Mayo and therefore I am unable to have testing done at the hospital.) I am beyond thrilled to go to Mayo and get their expertise as I have been left in the dark by my diagnosing pulmonologist….maybe I should just call him my X pulmonologist. 🙂 Thanks again. Kate

@onana

@jweisser, Welcome to this forum. You'll find information and support here that is not available anywhere else in such a convenient package. I was diagnosed with bronchiectasis in 1997 — had never heard of it. It's taken many years and lots of independent research and lots of personal experience for me to feel that I know what it is, what it means in my life and in my future, and how to best protect myself. People around me have no conception of the condition, and I've had to work with a couple of pulmonologists who understood it less than I do! Fortunately, I'm with a knowledgeable, proactive pulmonologist now, but you can't assume that "the doctor knows." Arm yourself with information. Plenty of it can be found right here. You will be empowered by it.

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@onana, I received a message on My Chart from my PA, she said…………….. RE: Visit Follow-Up Question
Message body:
Your symptoms are very consistent with bronchiectasis. I have referred you to pulmonology. He wants you to proceed with a PFT. that will be useful for the pulmonologist.

So I guess we move on, I'm still trying to think this is only a chest cold that won't let go. My PFT is Monday, after that she will have an appointment with a Pulmonoligist in Rapid City. Thanks to everyone who offered information and support.

Liked by Dee

@auntnanny

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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@auntnanny, I do have access to Mayo Clinic in Rochester. My two sister would go with me for a road trip if I decide to go. That would leave my husband home with the animals. We live about 12 hours from Rochester and have been to Mayo clinic a couple of times. Not for this. The first time I was seeking treatment for Fibromyalgia the second time we went was for my niece who had colon cancer. There was nothing they could do, but we had the reassurance that what they were doing in Rapid City was what they would be doing. I will wait for my other two appointments then we might make an appointment with Mayo. Then I know I've had the latest and greatest. Is it possible this could be from radiation after breast cancer?
Thanks for this group, I've received a lot of info. Jweisser

jweisser ……. I'm curious. What did Mayo's recommend for fibromyalgia? My doctor has long told me I have it and I tried Lyrica once. Did not get along with that.

Liked by Dee

@jweisser

@onana, I received a message on My Chart from my PA, she said…………….. RE: Visit Follow-Up Question
Message body:
Your symptoms are very consistent with bronchiectasis. I have referred you to pulmonology. He wants you to proceed with a PFT. that will be useful for the pulmonologist.

So I guess we move on, I'm still trying to think this is only a chest cold that won't let go. My PFT is Monday, after that she will have an appointment with a Pulmonoligist in Rapid City. Thanks to everyone who offered information and support.

Jump to this post

@jweisser Thanks for the update. I would urge you not to be afraid of the tests. You want to know for sure what's going on in your body so you can get the best care, to maintain the highest quality of life, no matter what. The PFT will yield good information. For me the definitive test that provided the basis for a solid diagnosis was the CT scan. Ask the pulmonologist how many cases of bronchiectasis he/she has treated. Some pulmonologists are very inexperienced when it comes to bronchiectasis. You need someone who is up on research and treatment. Please keep us informed. I join others in the forum in sending best wishes and hugs.

Liked by Dee

@windwalker

@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 Terri, I am have major reflux since I’m using Toby! And I’m wondering if you have that problem too. Is there something that’s on the natural side I can you? Thanks Rita

Liked by Dee

@auntnanny

jweisser ……. I'm curious. What did Mayo's recommend for fibromyalgia? My doctor has long told me I have it and I tried Lyrica once. Did not get along with that.

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auntnanny, I didn't have time to stay the extra 3 weeks to go though the program at Mayo for Fibromyalgia. I tried Lyrica but didn't work for me, I now take Cymbalta which I don't think helps either.
The drug I now take for my fibro is Naltrexone 4.5 mg. In much bigger doses it's used to help take people down that are addicted to hard drugs. It helps more than anything I've tried and that's a lot. The most help I get is just know what is going to make me hurt and not overdoing. I'm wondering if this is part of my fatigue too.

Liked by Dee

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