In my earlier posts I shared information and details about my husband Bruce's MAC infection and treatments and asked many questions of this group.
Bruce had an appointment with his Johns Hopkins' ID/Pulmonologist on Friday and I am delighted to tell you all that the information and responses I got from this discussion group were extremely helpful in guiding us through what was a very tough couple of hours.
Bruce came away from the session saying he felt like he had been run over by a Mac truck, no pun intended.
But, it would have been far worse without the knowledge and guidance from this group that we used to upgrade our own MAC information.
The doctor listened to all of the updates on my husband's condition, asked and answered a lot of questions, and brainstormed some alternative treatment and testing options to perhaps get a better handle on why Bruce feels so much worse.
The Arikayce treatment has been suspended with the intent to switch to Amikacin in a liquid form that would also be inhaled through a nebulizer. The doctor suspects that the liposome suspension used in Arikayce may be irritating Bruce's lungs and attributing to his shortness of breath.
We hadn't heard of the liquid form for neb use, only the infused version which Bruce did at the start of treatment using a PICC line.
Has anyone had any success with the Amikacin liquid inhalation?
According to the doctor, the one culture that was positive for MAC (following 3 negatives and preceding what looks to be another negative) will undergo a sensitivity analysis to test for drug susceptibility. If nothing shows up we are keeping our fingers crossed that it was just an aberration.
The doctor is also trying to get the less acidic version of 7% saline for Bruce's neb treatments. I raised that (thanks again to this group) with the suggestion that less irritation on the lungs may also reduce the sob.
Thanks again for all of the constructive suggestions and guidance. This group is a blessing.
Melissa,
Great update on your husband. I moved your post with your update to this discussion where you were sharing about his sitution:
- Newbie MAC caregiver with questions https://connect.mayoclinic.org/discussion/newbie-caregiver-with-questions/
I did this because I wanted to be sure that @egayle187 @crepass @cmi @sueinmn @coco1970 @becleartoday @raney @rits @gej53 @migizii @cayenne @thumperguy and others who shared their tips and support saw your update and the high praise you have the knowledgeable and compassionate members of this forum.
You ask about Amikacin liquid inhalation. Here are a few related discussions that you'll find equally useful:
- Inhaled Amikacin: What works for me by @katemn https://connect.mayoclinic.org/discussion/inhaled-amikacin/
- Any good results from taking Amikacin?? and what were side effects? https://connect.mayoclinic.org/discussion/any-good-results-from-taking-amikacin-and-what-were-side-effects/
How is it going with the PICC line?