Longevity: I'm worried about rapid progression in lobes

My good friend died within one year of treatment for advanced BE and MAC at age 75. She was otherwise in good health. Her treatment plan was inadequate and delayed. She did not have a team who noticed her decline nor practiced by guidelines. I miss her every day and try to keep educated and compliant with treatment standards. It is necessary to advocate for yourself. I recently had a strong BE flare and sputum culture management omitted re ordering AFB after bronchoscopy, when doc knew I had a positive NTM from Quest 3 weeks prior. The opportunity to know if it is colonization, relapse after 2 yrs or re-infection was lost.

I’m going to be 74 in a few weeks and feel horrible. I’ve tried everything and nothing seems to help. The doctors keep trying new drugs but they really don’t know what will work since this is such a wretched disease. I too have advanced BE and MAC, I don’t know how long I have left but I hurt all the time especially across my chest now. It’s all so sad - I used to be the picture of health, just 4 short years ago, oh how things have changed ……hard for me to believe now.

I’m so sorry you’re suffering like this. It is a sobering reality.
I have moderate BrONCHCHiE exorcist in three loaves, but I do feel weak a good percentage of the time and I am in pain
Maybe you should ask about the new drug that was available finally. I forgot the name. It begins with a B. My pulmonologist agreed to try me on it.
Supposedly it reduces exacerbations
All the best, Jill

I’m so so sorry you lost your friend. I have lost many and I know that feeling it is dreadful. I have lost many in their 60s from other diseases. Very scary.
Are you able to stay home with your flares?
I refused to go into the hospital again
I actually invested in supplemental oxygen in my bedroom, which I have never used, but just in case I need it. It gives me some reassurance. It cost me 150 a month and we’ll worth it.

About two years ago, I was originally diagnosed with pneumonia in my upper right lobe, which eventually develop an abscess and necrosis

I have continued to have recurrent pneumonia’s and infections ever since then and finally was diagnosed with BE
A few months ago
Here’s my question
In one year, the BE spread from one lobe to three, which scares the hell out of me. Has anyone had a similar issue with rapid progression and how do you know it won’t continue at that rate ] THANK YOU JILL

Bronchiectasis spreading to more than one lobe is not an uncommon story especially if you were untreated.

Are you being seen for your bronchiectasis at bronchiectasis center for excellence? There are about 33 as of now spread around the United States. It’s essential to connect with a pulmonologist who can guide you in your treatment. A foundational part of treatment is airway clearance. I know that if I did not keep up with my airway clearance, I would develop bronchitis and likely pneumonia in short order. Our lungs in bronchiectasis do not clear naturally like in healthy people so we need to help it along.

Have you found the thread on the ABCs and resources on bronchiectasis in this forum? It’s chock full of useful information. It is overwhelming at first, but I assure you this disease is manageable once you develop a routine and have an experienced and knowledgeable pulmonologist on your team.

Thank you for your kindness.

Thank you for your kind reply. I am doing ok now, submitting further samples. My best to you

@jillcrawford BE can progress quickly as we know when infections are left untreated. Sorry you are dealing with this now.

Wondering too, were your lungs compromised in some other way besides getting the pneumonia and other illness that physicians may have missed? Were you ever someone who smoked? Suffered with asthma? Family history of lung issues? Work related exposures? Sorry for the litany of questions.

Many on this site might be 60+ age range and any insights are appreciated. That being said, we know everyone’s experience with BE seems to so individualized.

Scoop- I know that we are all different with how and what we experience with BE in general however I have a question for you that is related to getting the mucus out and what I see.
I am nebulizing two to three times a day. I try to do 3 times a day with the last a bit before going to bed. That last session appears to have helped me with a good recovery sleep.
Every day I have mucus plugs, per my understanding of mucus plugs. They look exactly like what the very good Tyler RT said to me about what I had in the sputum vile when she looked at the vile and what was in it.
My question to you: Do you have mucus plugs every day??
Barbara