Finding a cure

"Walk with the dreamers, the believers, the courageous, the cheerful, the planners, the doers, the successful people with their heads in the clouds and their feet on the ground. Let their spirit ignite a fire within you to leave this world better than when you found it"
The other day I found my self daydreaming about what this life would be like if CF weren't a part of it. I was imagining playing after dinner instead of setting up for treatments, or waking up and taking a day trip without time constraints. I imagined making the kids all the same thing for lunch, not spending time pouring vegetable oil onto fruit and trying to mentally calculate how many grams of fat he would be consuming to appropriately distribute enzymes. I imagine what I would do with the time that would become available, previously spent refilling prescriptions, fighting with insurance companies over why we need a certain medication. I imagine counting weeks and months as weeks and months instead of 15 and 30 day on-again off-again antibiotic cycles. Maybe the constant fear and worry and anxiety that I have and try my hardest to suppress would melt away, or maybe I'm confusing the emotions of parenting with the emotions of parenting a child with a chronic medical condition. I really don't think the days that we're experiencing are all that bad, but I was dreaming of better. 
I keep myself pretty busy these days and a lot of it centers around Cystic Fibrosis. The C3N work that I'm doing is amazing. I am involved with different groups and committees at the hospital and at the CF Foundation, related to everything from adherence to advocacy. I am a caregiver, so I order meds, administer meds, clean medical devices, manage insurance issues, track symptoms, and the list goes on. However, the list of things that I do that aren't related to CF is longer. CF isn't our life, it's just a part of it.
We are exactly one year out from the first time I approached the CF Foundation about embracing the value of collaborative care - care involving patients and clinicians and researchers all working together to test and improve tools and systems to better manage health and care. Next week, we are going to Bethesda, MD to the headquarters of the CF Foundation to discuss the scope of work that we are about to partner on and I could not be more excited. How did all of this happen? What did I do to get here? Could my dream of collaboration for a cure really be coming true? 
I'm often asked what I did to get here, or what I even still do. I talk about it. I talk to everyone I meet and tell everything I know to everyone I know. I gather information and I curate information and I share information. I ask a lot of questions (I mean a LOT of questions). I identify problems in the current system and share opportunities for improvement. I pay my own way to conferences and am forward in suggesting that others pay my way to more. I'm energetic, passionate, and persistent because it is in my nature to be so, but also because I don't have a choice not to be. He is my child and my job is to keep him alive and well, and to guide him in the directions that his life takes him. It is my job to protect him at all costs, so I take the risks that I probably wouldn't otherwise take with the hope that I will find the missing puzzle piece that will cure this disease. One of these ideas will work, and I will keep trying until I find it. 
I'm in disbelief that it's all happening, honestly. I heard about it and I asked questions and I shared what I learned and I nudged and nudged some more, and at times I pushed and at others I pulled, but we're getting there and I can't believe it. I go to bed at night sometimes annoyed by my own optimism and excitement. It's a sheer and giddy joy knowing that this is all happening because I had the courage, and the responsibility as the parent of a chronically ill child, to speak up and encourage the re-design of a system that has the potential to save my sons life. I'm no longer imagining that potential because I'm working with other patients and clinicians and researchers and all stakeholders and I'm living this change. 
I cannot wait to share about all of the awesome things that will come out of our collaboration with CFF next week when we visit their headquarters in Bethesda! 
"Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has." -Margaret Mead

Every day is a long day

We just found out this week that Drew's secondary insurance decided not to renew us for the upcoming year like they have every year for the past 3. Instead, we have to save receipts and prove to them that we spend a certain amount out of pocket on our medical expenses on a monthly basis and then fill out a gazillion and ten forms and send it back to them for review to decide if they will cover us. It's as though they think that this disease gets cheaper to manage as time goes on, when the exact opposite is true. There are more medicines and treatments, taking more time and costing more money, and none of it keeps him from getting any sicker. The co-pay on Drew's monthly medicines is around $6,000, monthly, so hopefully we will be able to get their decision changed fairly quickly, but it's just something else that's been added to my plate, something else that I have to fight for, and I hate fighting all the time.

We're into our 15 day on/off cycles of inhaled Ceftazadime. When we finished our first cycle, Drew's cough was nearly gone and his appetite back up. We've been off for a week now, and just this morning he decided he didn't want to eat again. My gut (and the data that I have been collecting on his behaviors) tell me that that means he's getting sick. I hate that he's always sick. I'm always fighting with him to eat, to drink, to take his meds, wash his hands, use the bathroom. He takes a multivitamin that he recently started refusing because they no longer make the kind that he'd been on his whole life. They changed the flavor to orange and now he won't eat it. My husband tried it and said that it tastes like vomit with a little citrus flavor, so I can't say that I blame him, but he needs it and so I fight with him to take it. I fight with insurance over whether or not certain medications need prior autohrization and then fight with them again when I don't get what I need in time because there are so many stupid policies and procedures in place, that,  I might add, are direct barriers to adherence. 

Patients and caregivers dealing with chronic conditions need a break! If it weren't for our fight, nothing would ever get done. Yet we are the ones with the least time and the least energy left at the end of a long day, and every day is a long day. I'm tired and I'm annoyed. I'll be appealing the decision but it won't be without a fight.