Healthy with MAC: What's your follow up like?

I was diagnosed six years ago with MAC and bronchiectasis, took the big 3 that first year. I think it came back but I changed to a specialist in bronchiectasis in Charleston SC. In 2018 I got the flu and it almost killed me but that brought a hideous cough that has never left and it's been 4 years later (I was totally asymptomatic the first two years). The cough has calmed down a little but now I exercise six days a week, nebulize once a day with 7% saline solution and have had no progression for almost four years (two CAT scans). I do airway clearance once a day just with postural drainage, sometimes twice. I just have constant inflammation in my upper trachea/throat area that I live with because I don't want to take steroids but other than that I feel pretty healthy. Nan

I was diagnosed with bronchiectasis in 1997 and MAC in 2007. The pulmonologist I was working with over those years was unwilling to treat the MAC with the Big 3 because he felt the cure was worse than the disease. I had to change docs a few years later because of insurance changes. At the time of the change I was experiencing more lung damage caused by MAC and revealed by a very bad flare up and subsequent x-rays and CT scans. My new pulmonologist started me nebulizing 7% sodium chloride twice a day for regular lung clearance. She also sent me to the ID doc who put me on the Big 3, which I took for 2.5 years. It did nothing for me but make me sick 3 days a week and destroy my appetite. I quit the Big 3 meds last summer but continue to nebulize the sodium chloride twice a day religiously. I don't know where I would be without daily lung clearance. Even with the nebulizing I become congested every day and the congestion negatively affects voice and breath. All things considered, I'm functioning quite well. The lung clearance and regular exercise are the things that keep me pretty safe. Unfortunately, the lung damage due to MAC is slowly continuing. I so wish scientists would produce meds that can kill the infection without terrible side effects.

Auntnanny

My situation is close to a match for your question. Over a period of a few years I reached the land called “flare-up-free”. My Pulmo is a “Crusty” old guy; probably equal to, maybe greater, than my 82 years. My care migrated to him when his younger colleague bailed a few years ago.

I initiate a contact with him every 7 to 8 months. He has never suggested altering the schedule. Initially he continued to Rx 0.09 Saline (Nebulized) following the “impotent” approach initiated by his former colleague. (Impotence defined as failure to control febrile exascerbations).

Happily, on this forum, I eventually learned of the “kick-butt” properties of nebulized 7% saline solution which, when inhaled faithfully twice daily led me to the promised land of “flare-up-free” living with plenty of time to concoct these breezy verbal excursions .

My route to learning of an effective
way to manage my lung problem occurred not at a suggestion from the pulmo but from learning of “The 7% Solution on this forum. Don

Hi, I'm 67 and had to make that same decision. I decided on traditional Medicare with a Plan G supplement. I am so thankful I did. I am currently trying to get an appointment with NJH and would not be able to easily do so if I had an Advantage plan. The other thing I am learning is that your Plan D (for prescriptions) is also critical. Being on Medicare consumes a lot more of our budget than when my husband and I were both employed. Using an insurance broker to help you pick a plan is a good idea. Check your medical group to see if they have seminars that explain Medicare. That will help you wade through the details. 🙂

Good for you! That is an encouragement to someone like me. I've battled pseudomonas for over 10 years but was just diagnosed with MAC last week after a bronchoscopy. I'm a big believer in the nutrition piece and have eaten well for a long time but probably have not consumed as much protein as I should. Have you adjusted your diet in some way that may have contributed to your good news? Thank you!

needed to loose weight...did...also finally got a electric bed where head can be elevated to deal with my Gerd....have a friend who had lot of pseudomonas infections....had intense IV meds for it....now on daily oral preventative meds....as l recall

Hi, @pjas972j - I was diagnosed with bronchiectasis in 2020 and have also just begun my battle with pseudomonas. It was found in a sample from a bronchoscopy I had done in October 2021. I have had two rounds of Cipro that has not knocked it out. I was also put on inhaled Tobramycin with the second dose of Cipro but was not able to tolerate it and had an allergic reaction that required a tapering dose of prednisone to clear up. The next step will be IV Ceftazidime. Do you have any experience with it? Any words of wisdom from someone who has lived with this bug for 10 years would be much appreciated 🙂

Hi, I'm sorry that you have to go through this, but know it is not the end of life as you knew it. Yes, there's a battle but it's not all-consuming. I have been told that I am colonized with pseudomonas in both my lungs and sinuses. I can knock it down, but will probably never get rid of it - barring a miracle. I've had two sinus surgeries to open them up and that has helped tremendously. I may have to have one more but nothing in the immediate future.
As far as my lungs go, I tried the inhaled Tobramycin but couldn't tolerate it. I can't use Cipro because it interacts with my heart meds. I have had five PICC lines since my first diagnosis and those have helped the most. I've been on Doripenem, Cefapime, Meropenem (2x) and Zosyn. They don't like to use the same one often because of the resistance build-up. Each round lasted three to four weeks and I had a few months in which the cough decreased and I had more energy.
The PICC line feels daunting the first time but after a couple of days the soreness goes away and you get comfortable doing the injections. (That is assuming you don't have to go to an infusion center. I would push hard for that! One, it takes SO much time and two, it increases your Covid exposure since there are Covid patients at the infusion center getting monoclonal antibodies. Most insurance plans will pay for a home health nurse to come to your home to teach you how to do the infusion, then come once a week for labs and dressing change.)
I hope things go well for you!
Jennifer

Thank you for all this information, Jennifer. When I talked to my doctor about this last week he mentioned both options so I am glad to have some input on the PICC line as it initially sounded scary. I am waiting for results on a sputum sample but I am fairly sure I am not rid of the pseudomonas. My mucus production has really increased. I can feel it bubbling up into my throat even when I am not doing any active breathing or airway clearance.
Echo