Thank you for responding. The more the merrier!
My husband Bruce's breathing is much worse than before he started the full drug regimen, with shortness of breath coming with the slightest amount of exertion. He uses a finger oximeter to make sure that his oxygen levels are okay and they always seem to fall within the normal range at 94-97. This from a guy who walked 8 miles a day without fail a little more than a year ago.
He's also experienced weight loss, 10 pounds since January (182 down to 172), too low for a guy who is 6'6" with an already slim build. He has increased fatigue, and decreased appetite coupled with a complaint that various foods don't taste like they used to.
This may be too much information but here goes.
His Hopkins' team introduced the antibiotic regimen one drug at a time over a three month period with adjustments made following sputum cultures and blood tests. In September 2021 he began taking Azithromycin, followed by Rifampin, then Ethambutol. He also had a PICC line put into his upper arm in early October for infusions of Amikacin 3 times per week.
The infusions lasted about a month, and were subsequently discontinued following measurable hearing loss.
In early December, after several rounds of testing, the Azithromycin was also stopped due to its ineffectiveness in his treatment. In late December an inhaled version of Amikacin, Arikayce, was introduced as was a new oral antibiotic, Clofazimine, in substitution for the Azithromycin.
That's been the antibiotic regimen Bruce has followed coupled with a sodium chloride nebulizer and Aerobika device that he uses twice daily, along with a couple of inhalers.
Any insight or shared experience welcome.
As for me, thank you for asking. It's a challenging time. We spent several years prior to the MAC diagnosis trying to figure out, with our primary care doctor and other specialists, what was going on in Bruce's lungs. Much, much testing resulted in the MAC diagnosis and a shift to the Hopkins' pulmonology team, all of whom are excellent on the clinical side. Not so much on the hand holding.
With the advent of the Covid-19 pandemic we isolated and have continued to do so through the various Greek cousin variants and sub-variants. Our life is a layer cake of anxiety that is more worrisome on some days than others. We have tried to maintain our mutually quirky sense of humor and stay connected to our kids, family and friends in ways that lessens exposure for Bruce to the Russian roulette impact of any potential ailments, Covid or otherwise.
As Bruce's "care partner", a Hopkins' term, my day to day handling of his treatment protocols, tracking progress and doctor visits, coupled with managing household tasks, can be overwhelming. But we persevere.
@melissa08... It is no wonder you are feeling discouraged. Success didn't lead to hurrahs and "let's stop this awful regimen". This group is the place for you!
I had MAC and lost one lung lobe completely. No surgery to remove since I am "too old" at over 70. I got rid of MAC and got off the Big 3 after 14 months. However, I had copious amounts of mucous and shortness of breath. Candida caused the excess mucous and I got rid of it with "Candida Cleanse herbal treatments in 6 months. My doctor was amazed. Taking antibiotics for so long causes new problems, often candida.
I also have asthma and nebulize 2 times a day. Postural drainage once a day has made a big difference in getting the mucous out. See You tube for ideas on positions based on where your infections are located.
I have GERD which is a major contributor to mucous and asthma. I have found that clear Ensure nutrition drink goes down well when nothing else is appealing. Once the fluids are up, the appetite often comes back.
Now, we want you to take care of yourself while taking care of Bruce. Do something you enjoy. If you are too discouraged to think of something, we'll have many ideas,