Bronchiectasis: New Diagnosis

@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

@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?

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!

@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’!

@brigby
I too had mycobacterium Abcessus....but by the grace of God it is gone without antibiotics. To my understanding its a fast growing one which is treated more aggressivly with maybe Iv's at first and longer treatment.
I had really bad sinus problems then upon a sinus scan we decided surgery was needed. Not sure if this is an option for you if you have an active infection with myco Abcessus in the sinus cavity sinus surgery may not be an option.
But the surgery was the best thing ever I don't have sinus problems anymore. The sinus canal was made larger to help with any drainage. My sinus area was completely blocked off before surgery. I could not smell anything for years prior. Now I can smell things again.
Be careful of the water you use in the sinus area to my understanding even distilled water can have mac. Hope this info helps and you and your Drs find a successful course of action.
Shari

@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’!

@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