NTM-A — YOU CAN DO THIS!

Thank you for sharing your many experiences with NTM Abscesses. This is a really hard infection to deal with. I’m so happy to share some good news.

We met with my husband’s ID doc today at Penn and she confirmed that, after many years, Ed has successfully cleared this infection. There has been no evidence of continuing infection for a year so he is functionally cured (or as close to being cured as can be determined.) We’ve moved from weekly to monthly to three month to six month and now to annual checkups with the ID team.

It took a long time to get a diagnosis but we kept moving from doctor to doctor when efforts failed. Once diagnosed, we finally connected to a fantastic team at Univ. of Pennsylvania led by a team of ID doctors (Dr. Palacio took lead), supported by pulmonologist, pharmacist, audiologist, cardiologist, optometrist, phlebotomist, and home care nurses. A journey of regular doctor visits, weekly labs, a bronchoscopy, CT’s, EKGs, hearing tests, eye exams, sputum cultures, fights with insurance, taking antibiotics that we can’t pronounce, inhaled Amikacin for a year, waking up at 5:30 every morning to take Nuzyra on an empty stomach, a picc line for 3+ months, 120 bags of IV fluids (each week) administered at home, home nurses and so much more.

The journey is finally over and Ed is doing amazing. We wanted to give up so many times but the support from our extended family, notes from the grand kids, encouragement from our medical team, support from our faith community, reading your experiences and the support we give each other helped strengthen us - no matter how hard it became.

So, I want to say thank you for sharing your stories, tips, recommendations and research studies. We’ve read them every day and will continue to do so.

If you are struggling with this terrible infection, I hope that our journey gives you some courage to continue and to follow this hard regiment to the letter. YOU CAN DO THIS!!!!