Hospitalization on MAC

Posted by daughterofmacmom @daughterofmacmom, Dec 7, 2022

Hi all, I am terrified to be on here but I need help. My mom has MAC and has been taking the MAC meds and Arikayce for a few months and it’s been hard to say the least but for a bit, we thought things were improving. Due to getting sick a little over a week ago, we went to ER and she has been admitted.

There seems to be rapid decline of lung function and respiratory. I am trying to hold it together and get help or more info because all nurses and doctors in ICU seem really unfamiliar with MAC and didn’t event carry Arikayce meds. They advised us to bring it and continue treatment.

While we have been here, they are administering 5+ abuteral treatments a day and during morning, it seems to help but the nights have been bad to pit it mildly. They keep asking about intubation and advanced directives and keep administering morphine for
pain and Tylenol for fever.

I know we need to get over the rough part and am praying we do. The fever needs to break, and I know oxygen use may be permanent moving forward (oxy was as needed before) but I’d rather that than the alternative.

I need to know, should we be discontinuing the Arikayce and other MAC meds at this time? To focus on breaking fever and getting to better quality of life for the time we do have?

I know the MAC meds can be very much like chemo with harsh side effects. So should we stop? What could help right now? The day was really good and I just want to get back there.

Any advise would truly help.
Thank you.

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

gej53 | @gej53 | Dec 7, 2022

`Is there an infectious disease and pulmonology doctor consult on your Mom's condition? I would think there would be to advise on treatment.

Sue, Volunteer Mentor | @sueinmn | Dec 7, 2022

@daughterofmacmom - I am so sorry to hear of all that your Mom and your family are facing right now. It is never easy to face a crisis in a loved one, but much worse when the experts we rely on seem as unsure of whet to do as this sounds. Do they know what is causing the current crisis?

You are right when you say many doctors and nurses are unfamiliar with MAC - you would not guess to read about it here on Connect, but it is a rare infection - maybe 40,000 cases a year throughout the US, compared to over 1/2 million cases of lung cancer and 12 million cases of COPD.

As for whether to stop MAC treatment to deal with the current crisis, we're not medical professionals and cannot give you medical advice.

There are many moving parts to this equation, including your Mom's age, overall health, the condition of her lungs, other medical problems. It would seem that the hospital should have a team working together to help her.

Can you get a consult with a pulmonologist or infectious disease specialist, even one outside your hospital network, to get some help? If not, is there a possibility of transferring her to a larger, regional medical center with more specialized help?

I will be waiting to hear what more I can do to help get you.
Sue

cate123456 | @cate123456 | Dec 7, 2022

I agree with finding a pulmonary or infectious disease doctor Consultation if possible.
Do you know if they’ve done a sputum sample since she’s been admitted?
This may be from a coinfection and not the MAC.
I have MAC but my worse episodes and hospitalizations have been from serious coinfections. She may be too sick for a bronchoscopy, but a deep cough sputum sample culture can tell if there’s a coinfection in about six days or less.

What a GREAT daughter you are!!

daughterofmacmom | @daughterofmacmom | Dec 8, 2022

In reply to @cate123456 "I agree with finding a pulmonary or infectious disease doctor Consultation if possible. Do you know..." + (show)

Thank you all so much. This disease has been so scary. We got sputum test done via nasal because she hasn’t been bringing up any sputum at all for
the past months and the doctor finally
started her on antibiotics and steroids. We had to discontinue Arikayce anyways because there was no way for them to administer on Bi-pap machine which they escalated her to last night. We started at 100% on bipap and they have brought her down to 70% and hoping to wean her off.

I am praying so much right now for healing.