(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

I haven’t posted anything for quite awhile. My husband, who has MAC, COPD & Bronchieactasis had a flair up and was in the hospital for 9 days. He came home with an IV and I was given a crash course in giving him the infusion every 6 hours. It worked out fine for the 4 days that he needed the antibiotic. While he was in the hospital he was diagnosed with pneumonia and pseudomonous again. The pneumonia is gone but the pseudomonous is still present but not active. It must stay dormant in the body until the next flair up. Right now he is not taking any antibiotics due to the side effects. He has gained back his appetite and for the first time in over 1 - 2 years, he has gained 2 pounds. Fully dressed he now weighs 110. He is extremely thin. He is very tired and sleeps about 11 hours at night and then he takes a 3 hour nap every day. I think it is the infections that make him so tired. He has two new nodules in each upper lobe with irregular borders. Anyone familiar with this type of nodules. I am worried that he is getting cancer but we won’t know for sure until the end of November when they do another cat scan.

@windwalker I live 4 and a half hours from Savannah but only 2 and a half from Jacksonville. My little town is in the southwest corner of Georgia 45 min north of Tallahassee. The deep south! I do see where you are being treated at Mayo in Jacksonville. I really think I should go there if they'll accept my insurance, if not there then perhaps Emory in Georgia as @oldkarl suggested. My pulmonologist is super nice but....after my own research I asked for and got an Airway clearance vest. (Not much help but I keep doing) also learned from this group I asked for a nebulizer w 7% saline and that was ordered but I never got the neb because it wasn't covered by insurance and the saline was $70 a month w insurance. I've since found out more info about using a coupon at Walgreens to get the price down considerably. May be able to talk to my insurance and push it thru on Part A or B. Anyway, I really think I need to nebulize because I hardly ever cough. I need to get this gunk out!! Anyway, it's just a blessing to have found this group!

I do have a dental concern/question I haven't seen addressed in the group (or haven't come across it yet). I have several old amalgam fillings that need to be replaced. It's on "onlay" process that covers 2 -4 surfaces of a tooth. Extensive, but not a crown. What if any concerns are there for dental work w MAC? I have had a hip replacement 3 years ago (before any lung diagnosis) and one dentist always has me take Cipro the day before and after a cleaning etc. Another newer (younger) dentist said thats "old school" and not needed 3 years out. I should have probably started a new discusion thread!

@windwalker I live 4 and a half hours from Savannah but only 2 and a half from Jacksonville. My little town is in the southwest corner of Georgia 45 min north of Tallahassee. The deep south! I do see where you are being treated at Mayo in Jacksonville. I really think I should go there if they'll accept my insurance, if not there then perhaps Emory in Georgia as @oldkarl suggested. My pulmonologist is super nice but....after my own research I asked for and got an Airway clearance vest. (Not much help but I keep doing) also learned from this group I asked for a nebulizer w 7% saline and that was ordered but I never got the neb because it wasn't covered by insurance and the saline was $70 a month w insurance. I've since found out more info about using a coupon at Walgreens to get the price down considerably. May be able to talk to my insurance and push it thru on Part A or B. Anyway, I really think I need to nebulize because I hardly ever cough. I need to get this gunk out!! Anyway, it's just a blessing to have found this group!

I do have a dental concern/question I haven't seen addressed in the group (or haven't come across it yet). I have several old amalgam fillings that need to be replaced. It's on "onlay" process that covers 2 -4 surfaces of a tooth. Extensive, but not a crown. What if any concerns are there for dental work w MAC? I have had a hip replacement 3 years ago (before any lung diagnosis) and one dentist always has me take Cipro the day before and after a cleaning etc. Another newer (younger) dentist said thats "old school" and not needed 3 years out. I should have probably started a new discusion thread!

@windwalker Hi Terri, thank you for checking on me. I do appreciate it. Yes, I'm not happy that I'm having to go back and fourth with the insurance company. My doctor is having a phone conference with them tomorrow on my behalf. Either way I will be going to Mayo. I saw that Kate shared her news with you about her appointment with Mayo in October, that's awesome! I don't post much but I do read all of the posts ;). I will stay in touch with you publicly and share. I don't mind helping others so that they can get into Mayo as well. Thanks again for always staying in touch. Take care of yourself....hugs xx Dee

Question for anyone....I just got my first pneumonia shot and have to wait a year for the 2nd vaccine. I came down with pneumonia this past winter. I see that many people on this chat page do get pneumonia...Have you all been vaccinated? Do you come down with it regardless of your vaccinations? Just wondering how effective the vaccinations are for folks with MAC that have had pneumonia in the past. Thanks for any input.

Question for anyone....I just got my first pneumonia shot and have to wait a year for the 2nd vaccine. I came down with pneumonia this past winter. I see that many people on this chat page do get pneumonia...Have you all been vaccinated? Do you come down with it regardless of your vaccinations? Just wondering how effective the vaccinations are for folks with MAC that have had pneumonia in the past. Thanks for any input.