How Educating Myself About Treatments Probably Saved My Lungs (If Not My Life)

The day I was diagnosed with MAC lung disease, alarmingly, my pulmonary doctor's first question to me after confirming the diagnosis was,"How long do you want to live?"

She explained the reason for her scary question had to do with whether or not I would want to immediately begin the long and typically grueling treatment of at least 3 antibiotics for 18 to 24 months or might instead choose to wait until it progressed.

Out of fear, I signed on right away for treatment.

I thought I was lucky to be her patient

This doctor was the head of pulmonary disease for a statewide health maintenance organization (HMO), so I put my faith in her right off the bat and counted myself lucky to be among her patients.

The thought of being lucky vanished over time, though, due to serious medical errors she made, that I only discovered by educating myself about my disease.

Where my care went wrong

The first major error she made was prescribing me a steroidal inhaler. I learned via a research article posted in a MAC lung support group that steroidal inhalers are a no-no for MAC patients. I thought that maybe she wasn't aware of this… so I brushed it off.^1,2

Then, the second error happened. She put me on oral montelukast as a substitute for the inhaler, telling me that "it's been around for decades and is perfectly safe." Well, after a while on it, I ended up having night terrors every night and then suicidal thoughts; it was truly horrifying.

At the time, I had told myself that I was probably just scared by the health issues and life changes I was going through. After being in agony for months, I felt desperate and thought that maybe, just maybe, the drug was the culprit and that perhaps I shouldn't have ignored the pharmacy pamphlet after her verbal guarantee of "no serious side effects."

Taking matters into my own hands

My heart sank when I found and read the pamphlet. UGH. It warned that major mental health issues could occur with montelukast. I was immediately angry that my doctor told me that it was a safe drug.

I found a montelukast support group on Facebook and learned from others that the night terrors would likely leave me within days of discontinuing the medication if it was the cause. I stopped taking it and within 3 days, all terrors stopped. I could finally go to bed without fear. All thoughts of suicide magically vanished, too.

The last straw finally breaks

I joined a group of patients who submitted signed testimony to the U.S. Food and Drug Administration (FDA). Because of our testimonies, a black box warning was put on this drug, meaning pharmacists must now verbally inform patients of the potential serious mental health effects. I was so proud to help prevent the horrible fallout for others, as it sadly included multiple suicides being traced back to the drug.³

At the same time this was happening, my white blood cell count fell below normal. I told my doctor what I learned from watching a YouTube video produced by experts in nontuberculous mycobacteria (NTM) lung disease at National Jewish Health (NJH) about the side effects of MAC medications. No surprise, I learned about NJH through the MAC support groups.

Unfortunately, even after I pointed out what I learned from top MAC lung experts, my doctor denied the possibility that rifampin, a MAC lung disease drug could be the cause. Well, THAT was the last straw. I realized she was a terrible doctor, and I effectively fired her by asking for a new provider.

Where I am now in my MAC lung disease journey

That was all back in 2018.

I recently finished 17 months of MAC antibiotics and am now in remission. The successful treatment plan was given to me by MAC/NTM experts at NJH. Not only did the NJH experts do an amazing job with my treatment plan, but they also put me through 6 days of clinical testing to try to find out WHY I got a rare lung infection.

Their testing led to the discovery that I have 2 pathogenic mutations and they diagnosed me with cystic fibrosis (CF), another rare disease.

The first sentence out of the CF doc's mouth was, "I'm going to change your life!" Hearing that was SO MUCH better than "How long do you want to live?"

I was prescribed a medication that thinned my body's mucus and finally helped me purge the thick mucus in my lungs. I now expect to live a long life.

My own determination may have saved my life

When I reflect on my healthcare journey, I realize that if I had not been determined to learn everything I could about MAC lung disease, including the various treatments and who the experts in MAC lung disease are, I might never have survived the mental health crisis from the montelukast, or been diagnosed with CF – both life-saving realities.

I hope my shares help reinforce how important it is to seek out as much information as you can about your rare disease to best advocate for yourself.

Please feel free to share about your journeys or additional advocacy ideas in the comments below or in the forums. We need to share and encourage one another… our lives may very well depend on it.