← Return to Starting the Big 3 - terrified

Discussion

Starting the Big 3 - terrified

MAC & Bronchiectasis | Last Active: Feb 10 1:47am | Replies (15)

Comment receiving replies
@sueinmn

@doberdoo First, please take a deep breath, and know that your are in good company here! I certainly was frightened when I got my diagnosis and started to learn about MAC (also called NTM.) Then I found this support group at Mayo Connect, and learned I was not alone and everything changed for me.

MAC is a very slow-growing bacteria, so delaying a few weeks or longer to get a safe, customized plan in place for you and your other health issues does not mean the infection will grow rapidly out of control in that time.

Let's start with some basics - given your other health conditions, PLEASE consult you primary care provider, cardiologist and nephrologist before you start taking the medications. With all of your other conditions, it is vital to have a pulmonologist on your team who is knowledgeable about MAC and can work with your other doctors to develop a safe plan for you. The ID doc will manage your infection, but there is a lot more to do to get your lungs healthy again.

Not every person experiences every side effect with these drugs. They would not be on the market if that was the case. Some people report very few side effects, like some diarrhea, maybe fatigue... And a lot of the side effects can be alleviated or managed, if not, one drug or another may be stopped.

Many people here with other health conditions choose to try to manage their infections with conservative measures like twice daily airway clearance using saline in a nebulizer to break up mucus - some have even managed to clear the infection this way like @becleartoday

May I ask how your MAC was discovered in the first place? Have you also been diagnosed with Bronchiectasis or COPD? Do you already have a pulmonologist on your team who has talked to you about the other methods of caring for your lungs?

We're always here for you - and we know the path your are walking. Probably when you say MAC to most people, they don't even know what it is!

Jump to this post


Replies to "@doberdoo First, please take a deep breath, and know that your are in good company here!..."

My lung disease was caught by accident during a visit to the ER, heart related, in Aug 2024 so it has been there and growing for quite some time which leads me to think I am at the danger point. They found nodules and GGOs on a routine chest xray and immediate CT a that time. Had a broncoscope on January 6 and it grew the MAC culture. I have not had Bronchiectasis or COPD. I cannot see a pulmonologist for three weeks.

Sue,

This was very helpful to me. I have had mild bronchiectasis for a number of years. No exacerbations, treatments etc.

I had Covid last year and long COVID since.
Coincidental or not I have had a significant change. Lots of coughing, sputum production and significant drop in PFT. I get very short of breath. My pulmonologist here put me on levalbuterol and hypertonic. I do 3 times a day as well as a combo of vest and aerobika. This has helped with breathing.

I saw my pulmonologist the other day and now she wants me to try steroids, go into hospital for two weeks of random IV antibiotics, bronchoscopy. Also prescribed inhaler budesonide and formoterol.

This has me pretty freaked out.my sputum cultures have been rejected. I want to do another. I am uncomfortable with this plan without identifying a bacteria or lack thereof.
I have an appointment at NJH in mid March. What I see is that it is okay to wait a while without a lot of jeopardy in order to gather all the data to create an appropriate treatment plan.

I was panicking thinking maybe I should have the bronchoscopy here, but now it seems I can wait for my appointment there in March.

Am I accurate in this or do I need to do anything now.

I like a watch and wait scenario. I am very drug sensitive. Can not do albuterol or many antibiotics

Thanks

Pat