At some point in the eighth grade in 2008, I drank some bad water. Later, I vomited and some of that yuck liquid aspirated into my lungs. That invasion carried with it a battalion of crack marines, nontuberculous mycobacteria (NTM), to join the well-weathered forces already battling in my lungs — Pseudomonas and Stenotrophomonas, at the time. That’s the theory my doctors floated after finding out that NTM invaded most CF patients connected by a water source on the island of Oahu, Hawaii, where I lived. The bacteria usually comes from swamps, certain water sources, and soil.
My species was a particularly vicious one called Mycobacterium abscessus complex. As the name suggests, it’s extremely complex. Let’s call it Myco Ab.
The superbacteria is resistant to most antibiotics. My team had to special order a leprosy medication because it was one of the only slightly effective treatments. I was treated with four simultaneous antibiotics (including IVs) for extended periods — a year in 2009 and nine months in 2011, I think — before I decided the losses inflicted by side effects were too much to bear.
Doctors practically begged me to continue treatment. But I was stubborn in high school, and I wasn’t willing to continue with the treatment that had left me half-deaf and vomiting several times every single day. However, by my college years, the Myco Ab created extensive scarring (bronchiectasis) and cavities in my lungs, plus I was down into the 50 percent lung function range (FEV1). Not good. So, I resumed treatment in 2015. I was treated with another four-antibiotic cocktail for about a year before needing a lung transplant.
Myco Ab causes, on average, a -2.22 percent change in FEV1 each year for a CF patient — the worst decline of all bacteria for CF patients. For reference, Burkholderia cepacia causes -1.95 and Pseudomonas causes -0.95. Death or lung transplant is expected for patients within 14 years. I lasted nine.
Big problem: Most teams in the U.S. don’t want to screw with transplanting a Myco Ab patient. If Myco Ab colonizes the new lungs, it increases the chances of organ rejection.
Every transplant center my team tried said no. Many didn’t even want to see my records to make a context-supported decision. Well, every center except the University of California, San Francisco (UCSF). These beautiful, beautiful people took a gamble with me for reasons I can’t explain without using the word “miracle” over and over. The gamble paid off.
UCSF recently published a study about six patients, including me, who had Myco Ab, and were transplanted between 2007 and 2017. One died, but from causes unrelated to the bacteria. The others are living.
Other transplant centers believed I wouldn’t even survive my surgery, much less months after it. Yet I was told I had one of the fastest and smoothest transplant recoveries seen at UCSF. I continued treatment of Myco Ab for six months after transplant “to be safe,” but it never reappeared in my lungs.
Myco Ab is ripping into the CF population. The American Thoracic Society reports a prevalence of 6 to 13 percent of CF patients having NTM. Of those, Mycobacterium abscessus appears in 16 to 68 percent of cases. The rate of infected patients is rapidly growing, and so is the proportion of Myco Ab patients within the NTM community. (There are other forms of NTM, such as the less-lethal Mycobacterium avium complex.)
I’ve invested heavily in the NTM community, both socially and emotionally. I’ve seen person after person get rejected for transplant. Child after child. A parent. Some friends. A few have already died. People who fought this bacteria for years, some on 24-hour IVs. We know how to fight. Many are perfect candidates for lung transplantation when it comes to mentality. But most centers don’t even want to glance at our records. Because it’s a risk, and centers have two key priorities among many: get a good survival statistic reputation and don’t “waste” donated lungs. So, they see “Mycobacterium abscessus” and duck for cover.
This, despite the Cystic Fibrosis Foundation publishing NTM clinical guidelines that state in the very last point: “The presence of persistent M. abscessus complex or M. avium complex infection despite optimal therapy is not an absolute contraindication to lung transplant.”
Do you know how much it sucks to be dying in a bed with your loved ones crying, denied a life-saving treatment via cold, professional emails simply because you drank some bad water as a 13-year-old? I do.
The case studies regarding transplant with Mycobacterium abscessus are small and don’t prove it’s always a good idea to do the procedure on someone who has the bug. But case studies, like UCSF’s, like my life, are proof that it can work.
Next week, I’m going to present some more statistics and an interview I conducted with Dr. Tavs Qvist of the University of Copenhagen, who has publicly advocated for lung transplantation of people with Myco Ab. This bacteria is tearing through our CF community at an increasingly rapid momentum. Transplant centers can’t ignore the problem anymore.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.