Drew has been culturing Achromobacter, an antibiotic resistant bacteria, in his lungs since January. We have had several hospital stays, a couple of procedures, endless antibiotics and even more cultures done in our quest to tame this beast. It's not causing any terrible harm, as far as we can tell, yet. His CT scans don't look any different than they did two years ago and he is growing well. It just seems to cause this little, annoying, lingering cough to pop up from time to time and it won't go away without antibiotics. And when it comes, he doesn't want to eat. But he needs to eat, and a lot. Drew has been off of antibiotics for no period of time longer than 2 weeks since last January and that's terrifying. You see, he's only three years old, and if we pull out the big guns now to fight this, I'm afraid we won't have anything left in our arsenal when we really need it. There is an abstract in the 2013 North American CF Conference Program that states, " Once colonized, achromobacter appears to lead to a significant decrease in FEV1 and increase in hospitalization rate. An average decrease of 16% of FEV1 over an average of a 48-month period was observed." He's too young to do PFTs to determine his FEV1, but let's suppose he's at 100% today. By age 7, his lung function would be at 84%. By age 11, down to 68%. Before he is 20 years old, if Drew continues to grow Achromobacter, his lung function would, theoretically, be down to 36%, low enough to place him on the transplant list.
As I've spoken about many times on here, I track everything about Drew in an attempt to learn more about him and about his CF and how his CF compares with the CF that other people have. It's such a unique disease in that everyone is affected differently. I've been tracking using PersonalExperiments since early this spring, and have gotten some very useful data. This data, in fact, even helped to prevent an admission at CHOP this summer. I scour the internet and medical books looking for answers that could help to explain different aspects of this disease that I don't always understand or don't agree with. I look for novel treatment options and I take what I find to his doctor. When I ask her questions, she does her best to answer, and always offers to help me to find the answers that she doesn't have. I go to conferences, I talk to everyone I meet, desperately hoping that someone will mention something that brings me to my "Ah-ha!" moment and I can solve this mystery and put CF behind us. I push our team at Cincinnati Children's Hospital to move faster and work harder to try new techniques that, for me, have provided insights that are changing things for us. If they work for us, they can work for others, and the new learning that will pour forth could be eye opening to even the most distinguished doctor or scientist. I'm talking about insights that I, the patient, bring to the equation.
When Drew first grew Achromobacter last winter, we immediately tried IV antibiotics. Even though this bacteria is antibiotic resistant, sometimes some antibiotics work. For Drew, the IV's didn't. After the IVs we tried an inhaled antibiotic for 30 days, to no avail. From there we repeated our course of IVs with different antibiotics followed by a bronchoscopy, a CT scan, and more IV antibiotics. The achromobacter remained. At this point we were resigned to the fact that Drew was colonized with this bacteria and it was unlikely to ever leave him. That did not mean that we would stop our fight against it. We decided to start cycling him 30 days on/off an inhaled antibiotic, as many with CF who are colonized with a bacteria do. The idea is that if we can't get rid of it, we try out best to suppress it and keep it from causing more damage.
When Drew was on an antibiotic he was symptomless, but once we came off, the symptoms quickly returned. During one of our early 30 days cycles, we noticed that his symptoms would go away for about 15 days and then start to return, even as we remained on our antibiotic. It was easy to keep track of this with the tools I was using. We decided to try another angle, 15 days on one inhaled antibiotic and then switch to another for the next 15 days. That technique managed to suppress symptoms for almost 30 days, but the cultures were still showing that achromobacter was there.
At this point, we were no longer really trying to eradicate, but rather trying keep Drew symptom free. The 30 day cycles split between two antibiotics seemed to be our best bet, but after the 30 days was up the symptoms would immediately return. We took another angle and thought that maybe because of the severity of his tracheomalacia and the propensity of these inhaled antibiotics to cause bronchospasms and a degree of airway reactivity that he wasn't actually inhaling as much of these medications as we thought or as necessary to control this bacteria infection. We decided to do 90 days on inhaled antibiotics, alternating between two different drugs every 15 days. For 90 days, Drew was symptom free (except for a brief stint during the summer when he got rhinovirus). When we cultured in early September, the achromobacter was still there. We decided that it was time to just run with the idea that we would keep this bacteria suppressed as best we could by cycling 15 days on/off of an antibiotic that seemed to really best control his symptoms, despite his achromobacter being totally resistant to it in the lab.
We began our first 15 day cycle in early September and Drew was happy and symptom free. He started school without incident and continued happily about his days with his cough nearly non-existent. On the last day of our 15 day "on" cycle, I happened to be looking over the data that I had been collecting on him and realized that the only combination or course of inhaled antibiotics that we hadn't tried was this one particular drug for a straight 30 day course. We had done it on and off for 90 days in 15 day increments with a second antibiotic mixed in. We had tried other antibiotics for 30 days straight. But the use of this particular drug for a full 30 day course hadn't been tried, and I, with agreement from his doctor, decided that we needed to at least try. I was the one who had decided to cycle him 15 days on/off because there was evidence in the data that I collect on him that his symptoms seem to return after 15 days. I was also the one who, desperate to try anything that we hadn't already tried, decided at the last possible second, to continue our first 15 day "on" cycle and turn it into a 30 day "on" cycle. I had agreed with the doctor that if this didn't produce different results that we would have to turn to either 30 days on/off or 15 days on/off, that he couldn't simply remain on antibiotics nonstop, forever.
So we pushed through, for 30 days, 3 times a day for 30 minutes on top of the 3 times of day for 30 minutes that we were already doing for normal, routine, maintenance medications. We were spending nearly 3 hours a day every day doing treatments. Drew hated it. We hated it. But we saw a clean culture!
We got a clean culture, a culture that showed no growth of achromobacter, our first since last January.We weren't going to announce this initially. We thought we would keep this information to ourselves until we had a second confirmed culture free of achromobacter. But in the world of chronic disease, we celebrate the small things.
The next day Drew got the cold that everyone else in this house had been fighting and the achromobacter came back. I know it wasn't really gone, but it was suppresed, and the extra mucus from his cold just stirred everything up and the bacteria is back and causing problems once again. We're back on the antibiotics, going to cycle now 15days on/off indefinitely. Because we were able to suppress it to the point that it wasn't showing up on a culture, albeit for short period of time, I will push forward on my mission. I will continue to try in whatever ways reasonable to keep it from causing him any harm. I will not accept a lung function decline of 16% every four years. But a clean culture is a clean culture, right? A small win, even for just a very brief period of time, is still a win. We will fight on!