What in the world is NTM?

At the age of 29, I discovered something new about myself.  Something I wasn't really excited about.  I had NTM. 


Let me back up, and tell you a little about myself.  I was born in Fort Worth, Texas, raised in Austin. I've lived in Vegas, and now I reside in South Carolina.  I'm a second grade teacher and I adore my job.  Most importantly though, I love my family.  I have a spectacular husband and a vibrant four-year-old son. 


Throughout my adult life, I was frequently ill, with what I believed were just normal respiratory infections.  I would go to the doctor, get some antibiotics, rest for a day or two, and then get right back into life. Eventually though, these constant visits to the doctor began to wear on me.  I had a young child, a job, family...and I couldn't keep up this charade. I went to an allergist (for the fourth time in my life), and he sent me to a pulmonologist.


This doctor discovered that I had bronchiectasis and possibly NTM.  He ran some other tests, ruled out a bunch of stuff, and began to plan my treatment.  The NTM was confirmed with a CT scan and sputum cultures. I was to do IV antibiotics for 8 to 10 months.  I'm thinking, well this is awful, but by the grace of God, I can surpass this. So I began treatment.


I've always been able to give myself IV treatments at home, which is a blessing.  I can dose while watching TV, playing with my son, reading a book, doing the dishes...It's pretty amazing.  Is it what I would choose for myself, no, but I try really hard to find the glass half full.  (Most days.)


After 8 months of treatment (and a gamut of different drugs tried), and more CT scans, we discovered that the NTM was not cooperating.  My doctor had been certain that he could cure my illness, but it wasn't happening. So, he sent me to another Pulmonologist at the University of Florida. That doctor shared with me that what I have is chronic.  I learned more about my lung infection.  It's called Non-tuberculosis Mycobacterium Abcessus.  A mouthful, right?  And it's not going away.  It's a lung infection that I acquired from who knows where...the doctor said this particular bacteria grows in water and soil, and one day, I just inhaled it.  Sounds simple, huh? Apparently one breath, is creating a lifetime of complicated stuff for me.


I  began to come to grips with my illness.  People live with chronic illnesses all the time, right?


The doctors began me on shorter periods of IV antibiotics (12 weeks), followed by CT, and hopefully an "antibiotic holiday." My last round of antibiotics was every four hours for an hour at a time.  Mind you, I'm still working, being a mom, a wife, a daughter, a friend.  I wish I could devote more time to this disease, but I'm just not willing. 


I finally completed the last round of grueling antibiotics, was "free at last," but here I am two weeks later, sick again.  I'm not talking about 'cough cough,' I don't feel good.  I'm talking about, pain in my chest, body, lack of breath, can't do anything... 


I'm on a war path now.  Currently, there is no cure, but that doesn't mean we can't find the right balance of drugs that can keep me "me."   I decided to take control of my situation and go to a medical university.  Tomorrow I will arrive at MUSC for an overnight hospital stay.  The mission...to get it "under control."


Thanks for listening to my story.  I know there are others out there with this illness, or similar illnesses, that may be able to relate to me and what I'm going through.  


This too shall pass.  I'm sure of it.


To be continued...