It's been a while since I've found the time to write a blog post. I'm writing for Eli Lilly now, and you can check out some of those posts here ---> https://lillypad.lilly.com/?auth=76 I find a lot of the content I'm sharing over there to be stuff that I would also share on here, so no sense in duplicating!
We decorated for Christmas the day after Thanksgiving, marking the start of my most favorite holiday and time of the year. Christmas music is being piped throughout the house (and car and headphones) and reflections of the past year have inevitably begun. We had a tough go for the second half of this year, and we're sort of still in it. If you recall, Drew lost a significant amount of his lung function over the summer before we identified the culprit - a fungal infection. We treated him with anti-fungal medication and he thankfully improved until there was a second unexpected drop near the start of the school year. He had gotten back up to 91, and then in September dropped back down to 78. We had discussions about what might be causing it and what we should do to treat him, and decided to temporarily stay the course on the anti-fungal medication until he reaches and maintains a baseline on it, giving us confidence that it is both working and that the infection is under control. You may recall (or maybe not) that he had a fungal infection last year around this time. We started the anti-fungals for 3mo and he improved, so we stopped the treatment, and then by June he had lost 30% of his lung function, maybe not so mysteriously after all. I suggested that perhaps we hadn't had the infection under control as we had originally thought and, like fungus does, it slowly crept back wreaking silent havoc. I want to make sure that we are confident that things are under control this time before we change course, as a newer article suggests that fungus can become quite resistant if treated, if the medications used to treat it aren't used properly. The options seem to be, per this article anyway, treat the fungus and increase its adaptive skills, or not treat it and allow the pathogen to settle in the lungs. Not treating wasn't an option for us because of the impact that it was having on his lung function.
It's complicated, this disease. We seem to have the bacterial load in his lungs under control. Most research shows that bacterial exacerbations are a leading cause of lung function decline and lung damage in CF. But once we finally got the achromobacter under control with years of treatment on inhaled antibiotics and steroids, we seem to have traded it for a fungal infection. Did we cause the fungal infection? Perhaps we did, there's not really a good way to say. Is it better to have a bacterial infection or a fungal infection? I would probably argue that a fungal infection is *better* given that these is little research that shows the impact of a fungal infection on the progression of disease. I do not know if there is evidence to support the contrary, or just lack of research on this altogether. Either way, I'm interested to learn more and hope that the CFF will continue to study this.
He's got a cold now, coughing in his sleep and when he's running around and playing. We've added extra treatments which has him crankier than ever, but it's necessary. We've been going in to clinic for PFT's every two weeks and his numbers are remaining pretty consistent - 78, 81, 82 - but I'm not so sure how things will look with this new cold, perhaps something he picked up when we were in clinic for one of those appointments. Despite their best infection control practices - recently even declaring that the spread of infection among patients in our clinic had come to a halt with new infection control practices, which is great news - going into the hospital remains one of the most dangerous places for Drew to be. There are lots of sick people coming here for care, and even though we wear a mask and don't touch anything, he always seems to catch something when we have to come here. We should be able to use home spirometers to monitor our lung function. We should be able to track our weight from home, and other symptoms, and communicate what we learn with our care team, eliminating the need for unnecessary visits, saving everyone time and money, and perhaps even improving health. Machine learning can enable this, and should. While our center was using the Orchestra platform (which is no longer), we did start to see a longitudinal view of patients health shared with the care team. We did improve inter-visit communication, and intervention at more appropriate times rather than just when we happened to have a visit scheduled. It didn't reduce the number of times that we *needed* to come into clinic but it could have. I highlight the word *needed* as this is an evidence based medicine metric, a guideline put forth by the CFF for all patients, and embraced by all clinicians, regardless of whether its the right thing for the patient. The care teams aren't interested in reducing clinic visits below the required 4x a year. Or maybe they are interested but just can't becasue the CFF uses this as an accreditiation metric, requiring them to do this or find a way to improve rather than working to understand, from patients, why they aren't coming in 4x/yr and how we might work together to optimize care and outcomes according to the patient priorities. Hopefully our learning network will fix this. I digress.
I hope he's well for the holidays. I got this crazy idea to take my family to NYC to see some cousins the week before Christmas. What crazy person wouldn't want to drive 24hrs over 3 days to spend a night in a matchbox sized hotel room to see family and New York City at Christmastime?! I'm sure traffic will be delightful. At least we can stream Christmas music in the car!
I hope he feels well enough to open gifts with excitement and delight on Christmas morning, and that we don't have to pull him away from new toys to do extra treatments. I'd love to, for just one day, forget all of the medical stuff. I'd love to wake up and not have a schedule. I'd love to go out to dinner and not worry about hand sanitizer and enzymes. I'd love for him to run around outside, maybe in the snow, and not come back inside having a coughing fit, and rather than breathing treatments, have hot chocolate while all of the clothes defrost into a puddle in my foyer.
I've declined antibiotics for him since September because I don't think he needs them. Maybe I'm wrong, but I'm trusting my gut this time. We will go there if we need to, but for right now, we will do our treatment and take our medicine and listen to our Christmas music and enjoy this holiday as much as we can.