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monkeysmom (@monkeysmom)

Pneumonia, MAC and Aspergillus ?!?

MAC & Bronchiectasis | Last Active: Aug 22 5:38pm | Replies (8)

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Hello, and welcome to Mayo Connect. As you may already have seen, both MAC and pseudomonas are very big topics of discussion here.

I am sorry to hear that your Dad is suffering from so many serious lung issues. But I am happy that you are taking an active role in his health care. You provided a great summary of what is going on. I'm going to talk a little about MAC, pseudomonas & aspergillus, and then ask a few more questions.

First, all three of these infections are "opportunists" – they are pretty much everywhere, and most of us harbor some of the bacteria in our body without noticeable effect. (Don't worry they are not contagious to those around you.) BUT, for anyone with lung issues like COPD, asthma & fibrosis, they prey on our weakened bodies, especially taking up residence in our damaged lungs. Diseased lungs cannot eject the bacteria through normal lung action like a healthy lung can. This becomes even more of a problem when an oxygen concentrator or CPAP are used, if they are kept meticulously clean, they can also harbor bacteria.

Second, the story of numerous antibiotics, knocking down the infections, but never knocking them out is familiar to many of us. Each of these separate bugs needs to be treated with different antibiotics. Due to their prevalence in people with lung issues, many have become resistant to usual antibiotics and require either combinations or IV antibiotics.

Pseudomonas & Aspergillus have relatively short treatment periods – a few weeks each, but I am not sure of both can be treated at the same time. These also grow much more quickly than MAC bacteria, so are generally treated first, with a goal of eradication, before potential treatment for MAC. Each can be treated with oral, IV or inhaled antibiotics, or a combination of them.

On to MAC – Mycobacteria Avium Complex – it can have many strains, some of which are not harmful to humans, and may not be treated, most of the treatable ones are slow-growing and each responds to a different multi-drug routine. One, M. Abscessus, is more virulent and needs quicker treatment. MAC is diagnosed by taking the original sputum specimin and growing it in culture in a specialized lab to determine if it is MAC or something else. It takes 4-8 weeks for the culture to grow, be diagnosed as to it's strain, then tested against all the antibiotics to see what will kill it.

We like to call MAC infections "slow to grow and slow to go" – which means the treatment window is long, and there are options. The regimen calls for 3 or 4 antibiotics, taken over a period of at least a year, sometimes longer, and prescribed either 3 times a week or daily. The routine can be difficult, with some people having a lot of side effects from the meds. So, sometimes people who don't tolerate them well, or who don't have a lot of symptoms from the MAC, or who don't have a high level (colony count) of MAC choose not to use the antibiotics. Some people concentrate on airway clearance, using saline solution & coughing exercises, to get as much mucus out as they can, and hope their lungs can begin to heal.

Now come my questions – seeing your Dad's age & conditions, is he a veteran, and is he being treated at a VA facility? It seems many guys from the Viet Nam era have these conditions. If not, did he work in an industry where he was repeatedly exposed to environmental hazards – dust, chemicals, fumes, etc? And is/was he a smoker?
How confident do you and your Dad feel in his care team? This is a complex diagnosis, and really needs to be managed by the same doc or team to get the best results.
Finally, what does your Dad want, given that he is tethered to oxygen 24/7 and has already lost part of a lung? By that I mean, does he want aggressive therapy, and is he up to following a strict set of protocols? How much help does he have at home to handle the routines day to day?

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Replies to "Hello, and welcome to Mayo Connect. As you may already have seen, both MAC and pseudomonas..."

@sueinmn Thank you for your reply. My dad is not a veteran, we did however work many years in our family’s citrus and Olive farm- hence the dirt and massive amounts of pesticides (many of which farmers including us used even after taken off the market) he was a long time smoker I want to say he finally quit around age 45 or so when his health concerns became too much for my mother to deal with and their divorce.

I like his pulmonologist pretty well, he isn’t one to really talk about the bad and long term what that means. That’s extremely frustrating for me as I am a firm believer in knowledge being power and try to educate myself the best I can. When the lung fibrosis diagnosis came my dad stopped me from speaking with the doctor and until now 4 years later I am able to speak to the dr again. I’ve preached until the cows come home about changing tubing and keeping O2 and CPAP clean. I feel for the most part it falls on deaf ears.

He doesn’t want any heroic measures taken, unless he will be able to regain his health and sadly I do not see that happening.

I live 2,000 miles away from him and I have no problem jumping on a plane at a moments notice if my dad needs me, I sometimes don’t think he understands how much I still need him. He gets scared and comes to terms with what is happening to his body and then with the snap of a finger he is back in denial. Maybe he doesn’t want me to know he is scared or maybe truly he believes he will get better. I just know that I need to support him with whatever he chooses to do with his health issues. It does not matter what I would do, what matters is he is heard and his wishes are respected in order to make that happen. He is remarried and I love my step mother but they have a serious language barrier, she doesn’t drive and she is 70 herself so getting on her hands and knees scrubbing and cleaning just isn’t going to happen. He has kept his health issues from her for many years so he doesn’t “worry” her. I have told him I don’t agree with that and he needs to be honest with her so they can help one another.

I am going to Ca in 3 weeks along with my aunt and cousin (his sister and his other sister’s son) in hopes we can talk to him
Face to face and get him to listen to how we feel and help him with anything he needs such as a PULST, DNR, power of attorney etc. he knows I am coming but doesn’t know that they are. We hope too that he sees that we are a support system and maybe he will confide in us. I just know I feel helpless. I truly believe in my heart he is tired, and he doesn’t have the fight in him. Being a mother myself I don’t know how I would tell my children that. So it’s no shock to me that he hasn’t said that to me. I just know that I need to love him and help him if I can.

I’m happy to answer anything else that I can if you have other questions.