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 Support Group.

Terri Martin, Volunteer Mentor | @windwalker | Mar 30, 2019

In reply to @kpost2 "nebulizer seemed to mess with my eyes. Had a hard time focusing. Was told to stop..." + (show)

@kpost2 Albuterol made my heart race too. My dr changed that prescription to 'Levalbuterol' it is albuterol minus the racy heart and shakes. Are ypu nebulizing sodiym chloride (saline) at all? It really helps most of us with lung clearance.

franthony | @franthony | Mar 30, 2019

I had three days of sputum induction this week, which meant the nurse administered a saline nebulizer, then we sat and waited for me to cough. A tiny bit. I don't even know if it was enough for AFB samples. So that must be an individual isefulness sort of thing.

Sue, Volunteer Mentor | @sueinmn | Mar 30, 2019

In reply to @franthony "I had three days of sputum induction this week, which meant the nurse administered a saline..." + (show)

It seems like my productive cough magically disappears about 3 days before sputum collection time. Before I do the saline neb, I use Mucinex to thin the secretions and drink LOTS of water. Sometimes a levalbuterol neb before the saline helps too.

jengelage | @jengelage | Mar 30, 2019

In reply to @sueinmn "It seems like my productive cough magically disappears about 3 days before sputum collection time. Before..." + (show)

Which Mucinex do you use?? Thanks.

Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 2019

In reply to @pfists "@tdrell I'm in Minnesota It was a regular bronchoscope. But my doctor checked off to check..." + (show)

@pfist Hi Shari. Do you live near the Mayo clinic?

Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 2019

In reply to @kpost2 "I get 300ml of Privigen every four weeks." + (show)

@kpost2 Hi. I just looked up privigen. I see it is to boost your immune system.

Terri Martin, Volunteer Mentor | @windwalker | Mar 31, 2019

In reply to @tdrell "@pfists...being in Minnesota...with Mayo nearby ...has it appears an influence over the thoroughness of medical care!!!..." + (show)

@tdrell You live near the Mayo there?

Merry, Volunteer Mentor | @merpreb | Mar 31, 2019

In reply to @kpost2 "It was Albuterol. Twice a day." + (show)

@kpost2- Good morning. I'm with you on Albuterol. I hate the side effects. I feel like in one of those old fashion shaking machine. But they work and their effects become less over time. I have a tendency to stop meds that I don't like because I want to feel "normal". But that's really being short sighted for me. I have had to be patient and "put up with things" for a short while in order to feel better in the long run. There is probably a barrier that you could put up for your eyes. or close them and rest. It only lasts a short time and it helps over time. I do hope that you will reconsider. It helped prevent a bronchitis into developing into a full blown pneumonia for me and let me stay at home.

Merry, Volunteer Mentor | @merpreb | Mar 31, 2019

In reply to @windwalker "@kpost2 Albuterol made my heart race too. My dr changed that prescription to 'Levalbuterol' it is..." + (show)

@windwalker- Good morning! I had no idea that there was an Albuterol minus the shaky side effects! I'll check into that. Do you know if the inhalers have that too?

Merry, Volunteer Mentor | @merpreb | Mar 31, 2019

In reply to @danielad "@tdrell; @kpost2; @brigby; @pfists; @marylink; @windwalker -- All: I have a light case of Bronchiectasis, discovered..." + (show)

@danielad

@tdrell; @kpost2; @brigby; @pfists; @marylink; @windwalker -- All: I have a light case of Bronchiectasis, discovered via an MRI at least 9 years ago. I suffered from continuous allergies, asthma, and sinus infections, also severe and frequent bronchitis. My test results were in the normal range, but I was not getting any better, so my Pulmonologist said -- "What if you have bronchiectasis?" I didn't even know what that was! But I found out in short order!

I would like to emphasize the following -- After being diagnosed, I searched for a Pulmonologist specialized in caring and managing Bronchiectasis and I found a superb one! I am now being followed by her, at a University Hospital near me. I also agreed to be on the "Bronchiectasis Register". I would encourage everyone to find a "Bronchiectasis" Specialist and get on the Register.

The benefits of being followed by a "Specialist" are obvious, not so those of getting on a "Register". Well, this is an opportunity to do "something" for others, because while getting on the Register may not help "you" (though it could), it will hopefully help others -- I can tell you that I derive a great sense of happiness from knowing that "my case" can contribute to helping others!

Management of my case is as follows: Mine is a light case; however, I still need to be treated with a strong antibiotic when I get any sort of upper respiratory infection; I use Albuterol (others have mentioned it), but have not had any issues from it. I only use it when I must. Also, I get all the vaccinations in a timely manner (flu, pneumonia, etc.); and avoid contact with people who may have the flu, or other contagious upper respiratory virus. I see my Pulmonologist every 6 months, and have a "Breathing Test" every year. So far, so good; sure hope to continue in this way.

Last, but not least -- I have "Latent Tuberculosis (TB)" -- So I REALLY want to stay healthy! In case anyone is wondering -- Latent TB is NOT contagious; it simply means that the virus is in my lung(s) and "may" become active IF my immune system became compromised by another health condition such as cancer. The same pulmonologist does NOT want me to take the "standard" prophylaxis used for Latent TB; she tells me that the "cure" is too dangerous after a certain age, thus unwarranted at this time.

Wish everyone good health!

-- Dee

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@danielad- Good morning. You have made me smile. I love your attitude! We all need to do research about better care. When I found out that I had lung cancer we researched who my surgeon would be, possible outcomes for my cancer and anything else that we could think of. I find it part of gaining control of things that we can and helps lessen fear. So good for you and thank you for sharing all of this wonderful information.
I like your pulmonologist. She definitely is being cautious with your health. I hope that your latent TB stays at bay. Hope that this spring is kind to all of us!

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