Pneumonia, MAC and Aspergillus ?!?

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?
Sue

@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.

-Jane

Jane, my heart goes out to you! I understand your Dad being tired. There were days when I was battling MAC and the treatment for it that I was beyond tired. You (or his sister) might have to directly give him permission to say "No more." My sister and I had to do this with my Dad when he was battling cancer. My Mom was brave enough to tell me herself that she was ready for hospice and no more interventions. But then she left it to me to tell all five of my siblings and all 18 grandkids.

I love that you are willing to accept and support his decisions. And that you recognize that your advice may be unheeded, but you still don't turn away.

Since you are so far away, and further there is a language barrier with his wife, do you think there is any way to get a palliative care person (bilingual) involved? Sometimes instruction on issues like caring for his equipment would be better observed if an "outside expert" instructs and arranges a home visit from a respiratory therapist to demonstrate. If that was clean, it would be easier to overlook the condition of floors and corners!

Another possible option is to have the doctor order all disposable tubing, masks, mouthpieces, etc - with written orders to be changed weekly. You might have to call every week to remind them...

I agree that it is imperative to get his end of life paperwork in order - maybe talk about how difficult it will be for his wife, with the language issue & her not driving, to handle this by herself. Talk about what a kindness he will be doing to get things ready for her. Maybe ask her to have a bilingual friend or family member she trusts to be there so she understands everything that is going on. If you bring the necessary (California) forms, and you have 2 people to witness them, just maybe you can get it done during the visit instead of him saying he'll do it later.

I'll be holding you in my thoughts feel free to ask more questions, and please let me know how your visit goes.
Sue

Thank you Sue. I agree that a bilingual professional would be ideal. Remember that old saying “two hens in 1 henhouse” that’s the hard part, although I did write her a rather long letter in hopes that Google translate didn’t butcher what I was saying. I gave her tips and ideas in a gentle way to remind her she isn’t alone and it’s absolutely ok to ask for help. Unfortunately unless my dad faces what is the new reality of his life and stops trying to pull the wool
Over everyone else’s eyes. I fear not much good will come from our visit. I did already make many copies of different paperwork that if he wants to fill out he can and it will be available, I also found a mobile notary incase he doesn’t want witnesses to sign his paperwork. My dad and I have always been close so that’s the hardest part. I don’t have biological siblings. I do have a step-sister here in the states and a step-brother who is still living abroad. Neither of which are my dads children other than by marriage. I cannot count on the step-sister to help at all. Good gracious I’m really airing all
My family drama aren’t I ?

I appreciate everything you’ve said here and I will keep reading other posts as I find it both informative and comforting. I will definitely let you know how everything goes I’m hopeful that even in the moment if not taken well in time and separation over the time I’m there we can revisit and talk more about the hard stuff.

-Jane

My husband (83) first Temporal Arteritis (2020) followed by Aspergillosis a few months later which was difficult to diagnose. He was very athletic and in excellent health prior to this. Aspergillosis was treated by Infectious Disease Dr but that also involved a Hematologist, a Rheumatologist,
Endocrinologist, Pulmonologist. IFD treated him with Veraconizol (not sure of spelling) which was effective. It was a long process that required commitment on the part of patient and family. He was on oxygen 24/7 to start with; had walker and wheelchair at first. Was very determined to survive and comply, Not pleased with in home visits from nurse or PT as they spent most of time on laptop. Were referred to hospital PT who devised plan he could do at home which was changed regularly as he progressed. Appetite changed drastically and lost weight. Was also on a lot of prednisone and currently and under supervision of endocrinologist getting off steroids - no more prednisone but low dosage hydrocort. Following end of aspergillosis chronic cough began and still persists. Started with cough specialist in Jax (2022 -
getting anywhere because if COVID was hard) who diagnosed
Bronchiectasis a result of the aspergillosis pneumonia for which there is no cure. There is light at the end of the tunnel. Don’t give up! My husband has never had pain with these. He has chronic fatigue.
We have quality time each and every day. We read a lot and listen to books on devices. We go fit drives. I failed to say that we have lived totally isolated in our home since the aspergillosis
diagnosis and are this month again seeing others who are vaxxed and boosted with extreme caution. We are so fortunate to have all of the doctors that have been involved and have great respect and appreciation. I hope you are in an area with good medical center. We were short drive from one. You become your father’s best advocate! Take notes; do research;
keep up the faith and share it. We have a good life and came out of that dark tunnel. Good luck!

Jane I had not read all of the other posts today - only yours when I responded. My response is not applicable to your situation I don’t think; attitudes and current situations entirely different but the love and desire to do what the patient wants is the same. I will hold you in my thought daily abs hope your continue to seek support here. It helps!

I thought that even though your situations are s bit different that your post was thoughtful and encouraging. Thank you for taking ti.e to tell us how the two of you are coping. I love how you have found a new normal.
The people here on Connect are so empathetic.
Sue

@totty i appreciate everything you have said, it does help to hear others battles and how they are doing day to day.

I think the hardest part for me is being so far away from him, and his lack of seeking second opinions or even allowing me to take him somewhere that has a team fighting for him. I believe I said it in a post prior but I believe in my heart he is tired. He has been fighting lung issues more than 3/4 of my life. I think with each new diagnosis he feels more and more defeated. He had been ordered pulmonary rehab which he simply couldn’t do. He can’t walk more than 10 feet even with his O2 on, which is on all the time. I just think how discouraging this must be for him. A giant of a man who is, was and always will be my greater than life hero.

Again, I very much appreciate your story, it helps so much to know we are not alone.

-Jane