Mac with or without Bronchiectais. Antibiotics number of sessions

My husband had mac. He started the meds 3 times. It made him so sick each time. He lived for 7 years with mac. They said life existed was 5 years. The last 2 year's were awful. He stayed so sick. The last 3 months he was completely bed riden. I lost him this February. I hope you have a great support system. Praying for you

Cindy-
Thank you for your reply.
Losing family members is so very difficult and time is the only thing that helps, but much time is needed. I hope you are finding your way through the days. February was just like yesterday I would imagine.
Medications for anything are not pleasant and can change everything one way or another. Your husband must have been so frustrated.
That's somewhat of what I feel now. Frustrated. The frustration is due to the constant need to clear my throat of the substances that come up to the throat mucus, saliva, mucus plugs etc. It limits my social life and the freedom to just do things on the spur of the moment.
Overall my blood work comes out on the good side. Just need to drink more water with having to visit the bathroom day and night. Overall I get around just fine and also, overall, I feel fine and strong.
As I said I am weighing my decision as I tenatively prepare to take the meds. Azithromycin and the Ethambutol. The BE specialist doctor indicated no to all three. the big 3. Several pulmonologist recommended I start them and one did not. One of the doctors mentioned that if after a few months if I don't see improvement I could decide to come off them.
For me up to now, I have not had problems with the few medications I have taken in my 82 years so I am, somewhat. leaning towards at least trying to see how I and they work for me.
Your husbands experience was not pleasant and disappointing for you both.
I do want to hear the good and the not so good to fully understand what does happen for others. So THANKS, for sharing the journey you both had and please know I appreciated your post.
Barbara

I was on the big 3 antibiotics for 20 months. I did not experience any side effects. Unfortunately, they did not get rid mac. There are two types of mac - nodular and cavitary. Nodular is the milder version of mac compared to cavitary. Men typically the cavitary version of mac. Mac is a very strange disease and impacts everybody differently. I was a patient at NJH then Mayo. My treatment experience was bittersweet. I'm glad I tried the antibiotics, but I was sad when I was told they didn't work.

Yes, I can appreciate your words "I m glad I tried the antibiotics. but I was sad when I was told they didn't work."
As we know, we are all so different in our health, our abiliities etc. and in our personality as well.! All do actually come together in many matters of our lives.
You tried for sure, Mayo, NJH.
My journey so far, visits with five pulmonologists to find the one for me and as well my week at NJH (glad I went to NJH and for me it was like a medical vacation in Denver) and then my decision to see the BE specialist in Tyler, Tx, my primary pulmonologist. The last pulmonologist I visited with, this last week, to help with Tyler doctor and I in my journey. I really like and am so happy I finally found a local pulmonologist I can connect with, this last Edmond, OK pulmonologist, my secondary pulmonologist. He took time with me, was personable and answered all my questions.
From all that has been said to me I do not have cavitary and not sure I have nodular. Hopefully not either, BUT, I need to remember to put it on my list of questions for the doctor.
If you have time, how are you doing and what do you do for yourself to help with the BE/MAC etc.?
Thanks, Barbara

Thanks for the kind words.

I nebulize daily and walk the dog for one hour every day. I have "dry" mac - no sputum. Don't cough.
I don't let mac stop me. I flew around the world in January - Minneapolis - Amsterdam - Hong Kong - Tokyo - Minneapolis.

So glad you told me that....."flew around the world in January."
I want to travel yet, again. I have been hesitant for various reasons but getting comfortable with the thought. For me it is not only the BE but what is happening on flights and the world....but....I am giving myself more positive talks about it all. Those were some long flights. What a wonderful time you must have had. I love hearing travel stories, some of the little things done or found are the most memorable.
Thanks for your time and replies.
Barbara

Cindy, my heart breaks for your loss. (Irene5)

Big 3 28 months, amikacin iv, arikayce, big 3 again for 12 months. Fungal infection and voriconazole for the last 24 months. 8 years of symptoms with 6 years of treatment including NJH. All this medical care and the rest of my body is very sound so I feel fortunate

I had mild bronchiectasis for 13 years before I got mac. 14 months on the big three, with inhaled amikacin (not Arikayce) for the first six months. Treatment was successful, finished end of 2021. Mild tinnitus from the drugs, has not gone away. Stenotrophomonas started showing up in my cultures while on the big three. It has not gone away. I did lose weight and was fatigued during treatment, but do not regret my decision.
Good luck to you

Good morning Rick. You mention fungal infection- if you can, share what it was and what symptoms you had. My sputum culture comes back for the last months with yeast abnormal. Just that. Doctors are not concerned. How was your situation? Thank you