Wednesday, May 20, 2015

Stay tuned for whats to come!

I use to love writing on this blog. I still do love doing it but just can't seem to find the time. I want to commit to doing it more often, but it might have to wait a couple more weeks until school is out and we can finally set a new schedule that builds in time to do just that. I'm currently enjoying some R&R in a Bed & Breakfast, by myself, in Sonoma, and oh my is it glorious. A much needed escape from the chaotic everyday.  Yesterday I did a little touring and meandering around town before turning in early for a good night sleep. Today, I woke up late, chatted with a friend, and pulled out my computer with one thing in mind, writing on this blog. Later today I will be heading down to San Francisco for a meeting at Genentech before heading back to my family on Friday. I'll be in town Saturday and Sunday, and then I'm off to DC for the second design meeting at the CFF where we are imagining the CF Care model of the future, and then building it. More on that in a moment!

First, an update on Drew. He is well! HE IS WELL! We aren't sure if he was ever really having an exacerbation or what, but through some digging into my self tracking data I found that we had stopped Prevacid around the time that his cough developed, and when we restarted it, after 10 days on oral antibiotics, 14 days on IV antibiotics and 5 days on a steroid, his cough finally went away, and stayed away. It makes so much sense how his cough was random and sporadic, his appetite was down and his BMI was falling. Was it acid reflux that this kid was experiencing? When we added Prevacid and his cough disappeared and his appetite and BMI improved it sure made it seem like that was the culprit. I'm just so glad that he is better. The inexplicable in CF is often the hardest pill to swallow. I'm hoping some of the stuff I'm working on will help to decrease the amount of inexplicable by organizing what we all have and know just a little bit better than it currently is.

I have shared many times in the past about this C3N work that I've gotten involved with at Cincinnati Children's and the CF Foundation. Over the past 6 months I've been working with a couple dozen other folks who share my desire to see big change in CF care to dream up what the perfect system could and should look like. This isn't just about patients. Its about patients and clinicians and researchers all working together, finding ways to collaborate, do our jobs better, improve health and care. We've come up with some design targets; the new system for CF care must do things like build a culture of generosity, shared commitment and personal agency to improve health outcomes; it must foster strong care partnerships with mutual trust, collaboration and empathy; it must enable easy peer-to-peer support and information/relevant research; allow everyone to get care that they need, regardless of their ability to pay for it; it must encourage everyone to bring their ideas to the table for continuous learning and quality improvement; create joyful work conditions for those providing care to people with CF; and these are just some of the design targets! This is no small scale change that's happening here! We have spent months deconstructing the current system for CF care - what works, what doesn't work, what good ideas do we have for improvement that are either novel or stolen shamelessly from other disease communities doing this successfully. We have interviewed and researched and discovered different programs and tools that can potentially help us to meet some of our design targets, and have brainstormed ways to measure their effectiveness.

Next week, on Tuesday and Wednesday, the team will get back together at a meeting in person at the CFF in Bethesda, to shake out how we can pull together the key components of this new system and test whether or not some of the proposed pieces will be an improvement! What you probably don't know is that YOU are part of the team. If you have CF or love someone who has CF or care for some who has CF or research CF or fund raise for CF, you're part of the team. We all have good ideas to share, and this system will be a dynamic one that allows for anyone to contribute and test out ideas for improvement. It sounds a little abstract right now, but I promise you, it's going to bring transformation change to our community. The success of this model is dependent upon your commitment and contribution. Join Twitter and follow the hashtag #CFBigIdea. Write a blog about what you know and what you love and hate about CF life and care. Start a podcast (I did, you can search CF Matters on iTunes!). Tell the community what you're clinic is doing, and what ideas you have for improvement. Ask questions. And stay tuned for whats to come!!


  1. I'm not a CF parent or patient, but a friend of a family with two dear CF boys. I just wanted you to know that I so appreciate what you are doing. With people like you, and all the research going on for new, effective medications, hopefully life will be much easier for Drew in years to come! Thank you!

  2. Her article is very interesting , and I wait for the newest article article , thanks .