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.

@danielad

@windwalker — Hi Terri, at which point and why would one get a bronchoscopy to get the sputum out? Is it to get a sample or is it used to get what is stagnating and obstructing breathing? I have been asked to provide a sputum "sample", but I was never able to do it and my pulmonologist has not suggested doing a bronchoscopy. Thanks — Dee

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@danielad You may want to ask your pulmonologist, not your GP, about whether a bronchioscope would be a better option for getting a good sample for mac or pseudomonas testing.

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@windwalker

@danielad You may want to ask your pulmonologist, not your GP, about whether a bronchioscope would be a better option for getting a good sample for mac or pseudomonas testing.

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@windwalker — Thanks Terri; I will do that. By the way, how often would you need a sputum sample? Only once, or more? Thanks.
–Dee

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@windwalker

@franthony If one cannot get sputem to come up from deep down, then a bronchoscopy may be needed.

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Yeah, we've discussed that as an option when I hit the 12 month mark.

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@windwalker

@pfist No, Shari, it will be a conference for Mayo Mentors and Moderators. I was just putting it out there in case you or any other members wanted to meet up.

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@windwalker888
Terri just checking in case it was something open on MAC. Thanks for all you do for this board…I really appreciate all the time and effort you put in here!!!
Let me know when we get closer to that date and Hopfully it works out.
Shari

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@tdrell

@america rita…a side note….great you felt well enough for shopping…I read years ago that a study showed that for some people…women in particular …going shopping released endorphins and resulted in an elevation of mood!! “Retail Therapy” terri aka tdrell

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Yay shopping, makes you feel great.

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@windwalker

@tdrell Wisconsin. That's right, I remember that now. So, how have you been doing??

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@windwalkerTerri…good report from NJH in January…then 5 days after return….bronchitis just like last year…so good bye to February…started weekly allergy shots ( dust and mold) last July…so maybe that’s why I had only one round of bronchitis this year vs last year having 3!thanks for asking😀@tdrell terri

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Everyone….National Jewish Health on Sept 21st 2019 is having annual NTM lecture for Patients and Families in Denver. It probably will be videoed so in future, non attendees can see on line. @tdrell

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Newly diagnosed and waiting for results from bronchoscopy 6 weeks ago. On average, how long does it take for results? Not coughing much but becoming short of breath more often. Becoming more aware of my surroundings and staying away from sick people, then my husband comes down with a terrible cold. What a challenge. Thanks!

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@lnduh66

Newly diagnosed and waiting for results from bronchoscopy 6 weeks ago. On average, how long does it take for results? Not coughing much but becoming short of breath more often. Becoming more aware of my surroundings and staying away from sick people, then my husband comes down with a terrible cold. What a challenge. Thanks!

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@induh66

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@janovr

Sorry you are here, but welcome! It takes at least 6 weeks to grow. Wash your hands often and keep them away from face. Great advice here you will not here from your dr….. which BTW, I pray is a good one. My first was a medicine happy
pusher. 😀 Jan in Fl

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@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 @windwalwindwalker @pfists @tdrell

Good morning! 😃 I thank God for another day!

Two questions:

1) How many folks have been diagnosed originally with mild bronchiectasis, then have it progress to moderate or severe, and over what period of time? I know we’re all different, but just curious.

2) I’ve been diagnosed with mild Bronchiectasis & colonized with MAC since 2016. This year m. Abscessus, Candida albicans and now Mucor have shown up. But I’ve never been AFB positive until this last sputum culture. Any thoughts on this? Is the AFB + a sign disease is progressing? I’m waiting on CT & sinus scan results right now.

Thanks any and all for your input. Keep on steppin’!

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@@brigby– Good morning- I am sorry that your lungs are growing with more bacteria. Unfortunately with a warmer earth molds, fungi and spores and bacteria, etc. flourish. If you garden you can pick up a multitude of things and inhale, along with strong winds that come with a warming Earth. Candida can show up in multiple places, it's a fungus caused by different yeasts. Mucor is also caused by molds too.
Have you been put on any new meds for these? A bit of caution about Candida- your diet is important so google what can exacerbate it.
What symptoms do you have? What kind of climate do you live in?

Liked by Dee

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@merpreb Hi there, thanks for your response! I’m a Biology teacher so that plus what I pick up from scholarly articles give me a baseline understanding of bacteria and fungi contraction and growth.

To provide you some scale, I could barely walk across the room when diagnosed in 2016. Yesterday, I was able to walk and even jog a little for 30 minutes. I used to love exercise, now most of the time I hate it because it is such an effort, but I keep pushing as I know it is helping my lungs! By God’s grace, I’m still able to work full-time, since I’m only 57. I live in Fresno, California and the climate here is arid. We have some of the worst air quality in the world, so I do my sinus & lung hygiene each day. I also have CRS, and mycobacterium abscesses colonized in my sinuses, an extreme rarity evidently.

My current symptoms are fatigue, temp spike in the p.m., A little bit of yellow sputum each day, very little cough, No Hemoptysis, but dyspnea is increasing. I’m on a budesonide nasal rinse, Bid, and Gentamicin, also taken as an inhalant through my Navage

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@brigby – I'm so glad that you are still able to work. It sounds as if you have things pretty much figured out, except the question that you originally asked. Have you asked your doctor why things have progressed so rapidly? Are others on here seeing the same changes?
Your navage is for irrigation. Wouldn't an spacer allow a more deeper inhale? I find that when I don't use my spacer I don't get as much meds into my lungs. There's a difference in both apparatus as far as usage goes. Do you inhale the inhalant through your nose? You might be contaminating your self?

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@merpreb

@brigby – I'm so glad that you are still able to work. It sounds as if you have things pretty much figured out, except the question that you originally asked. Have you asked your doctor why things have progressed so rapidly? Are others on here seeing the same changes?
Your navage is for irrigation. Wouldn't an spacer allow a more deeper inhale? I find that when I don't use my spacer I don't get as much meds into my lungs. There's a difference in both apparatus as far as usage goes. Do you inhale the inhalant through your nose? You might be contaminating your self?

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Thanks again for your concern and quick response. I’m not familiar with what a “spacer” is?

I currently use a nebulizer daily and recently increased the saline from 3% to 7%. I had handfuls of brown sputum when diagnosed, now I have to work very hard, with vest, postural drainage and huff cough simultaneously to get even little bits of sputum out. I have thoracic pain all the time, and intermittent chest pain, but only in small, specific spots. No night sweats, chills, or those blasted muscle aches since my most recent lung infection (HIB) in January.

I add both the Budesonide and the Gentamicin to distilled H2O in my Navage. After years of using Neti pot, and WaterPik with a rubber tip, I feel the Navage delivers the meds better than anything. You kind of get a little mini sinus endoscopy with each treatment!

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