Its starting to get cold here in Cincinnati. That means two things - first, that I better get my act together for a long winter inside with 4 kids. And second, that the germy season is among us. Drew has been on antibiotics for the past 10 days for a junky cough. It seems to get better, but there are mornings that it still sounds gross. I'm worried that when we go to clinic on Wednesday that he will grow pseudomonas again. Of course we won't know what he grows until probably Monday at the earliest. We've been doing airway clearance 4 times a day, which has kept us pretty much homebound. Its definitely nice having the Pari Trek now which I keep in the car and can do breathing treatments when we are taking Ella to and from school.
During this time of antibiotics and increased treatments and stuff, I got thinking about the adherence problem that many CFers struggle with. I saw many presentations at the NACFC about why doctors think people don't take all their medications regularly. While we haven't skipped an airway clearance or a breathing treatment or a single dose of an antibiotic to date (okay, maybe once), I think that a big part of the problem for many people is simply forgetting. In the morning, we have to give Drew 1ml of Vitamax and one Prevacid pill. We have to give him enzymes with his milk, and then more with his breakfast. We do Atrovent, Hypertonic and Pulmicort after that. That's on Mondays. On Tuesdays, Thursdays and Saturdays, we add a Vitamin D to the morning mix. If Drew is on Omnicef, we have to skip the morning Prevacid because you can't give an antacid within a certain amount of time of giving the antibiotic. So now we have to remember to give the antibiotic and also to give the Prevacid after lunch. After nap we do another Atrovent and Hypertonic, and in the wintertime when Drew is often sick, we do his airway clearance then too. Between gymnastics on Tuesdays and the occasional story time or lunch out with friends, we need to remember to pack our enzymes because those get dosed regularly throughout the day (roughly 25/day). After dinner we do Atrovent, Pulmozyme and Pulmicort and then can't forget evening Vitamax and Prevacid when he's healthy, or Vitamax and antibiotic when he's sick. And when I'm talking antibiotic, I mean an oral one that we give him from here. When he's on IV's, the whole story changes as the two IV's need to be given every 8 and every 12 hours (one 3x a day and one 2x a day) very precisely to avoid damage to his kidneys. On top of all of this, we try to make sure that he's getting a billion calories in a day and plenty to drink to avoid dehydration, which can happen very easily to people living with CF. All the while, we try to live our lives as normal as possible and not let CF run them. Its a very time consuming disease, and the prescriptions for more to do just continue to pour in.
Honestly I think that people simply forget to take medications sometimes. We are diligent about it, but I know that not everyone is. Perhaps they don't fully understand the importance of such diligence, or perhaps their schedules are busy and the burden of the disease and all that it requires just makes them forget sometimes. I don't know why it is really, but I would love to work on a project with our clinic to try to improve adherence or at least better understand the problems with it and figure out ways to make it work for everyone. Here's a link to the big presentation on adherance from the NACFC for anyone interested in checking it out - https://www.nacfconference.org/art/plenaryarchives/2012%20Riekert.pdf.