Concerned about my dad’s new Mac diagnosis

Posted by candee444 @candee444, Aug 31 6:22pm

Hi everyone, I’ve been reading discussions in this group on behalf of my father. This past month he was diagnosed with MAC during hospitalization due to low oxygen levels and difficulty breathing. He had a cough before that didn’t seem to bother him much until one day he suddenly couldn’t catch his breath. He was put on oxygen and was treated with several antibiotics while they awaited results from sputum cultures. He also had a bronchoscopy that resulted in a pneumothorax and was treated for an air leak for about a week before it finally resolved. Now he is on specific antibiotics since his cultures confirmed mac and they sent him home with an oxygen tank and told him to follow up with the pulmonologist and infectious disease Dr in 1-2 weeks. My mom and I brought him home with us as he normally lives alone. He is barely functioning. His cough attacks are terrible and sometimes he vomits during them. We can’t leave him alone and am surprised that the hospital was willing to send him home to fend for himself in this condition.
I’m posting this because it seems that most people who are dealing with MAC are not suffering to the extent that my father is. The hospital specialists basically told us we just have to wait to see if the meds work. We feel he has declined in the past week since we brought him home. We have follow up appts tomorrow but I am now searching for a pulmonologist who specializes in MAC and am not even sure where to start. It’s quite discouraging how little is known about this infection. He seems completely exhausted and depressed and the cough attacks are very scary. Is there anyone out there who has it this bad??

Thanks in advance🙏🏽

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

Did they tell him which species of MAC he has? Did they do a susceptibility test? Does he have nodular MAC or cavitary disease? Which meds is he on?

My recommendation is you take him to a COE (Center of Excellence) such as National Jewish Health in Denver or UT Tyler. The top 3 MAC/NTM doctors in the US all work at NJH. They may have a wait of a couple of months (I had to wait 6 months for my initial appointment), BUT it is well worth it to get the opinion of experts.

Very few community doctors have any experience treating this disease and most of them are not up to date on the latest guidelines and research (87% don't follow treatment guidelines at all).

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@candee444 The very first thing I would like to advise in a situation is "trust your instincts." If you and your Mom feel your Dad is going downhill, get him back into the hospital – via his doc if possible, or through the ER if needed. DON'T wait for a crises please.
Pneumothorax recovery is not easy, nor is dealing with MAC. Keeping hydrated & getting nutrition while on multiple antibiotics is crucial.
Does your Dad have other, underlying medical conditions, like asthma, emphysema, a history of smoking or other exposure to toxic substances? Is he being treated by doctors familiar with him, or in a system that has little continuity of care (or maybe VA)?
Please don't wait for his appointments if he is failing now.
Sue

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