A story from the trenches (2015 NACFC - Infection Control Guidelines Session)

I remember the day a nurse walked into my sons room in the NICU in a gown and gloves, before we ever knew what cystic fibrosis was, before our official diagnosis. I remember feeling like something must be wrong with him if the nurses wouldn’t care for him without wearing a gown, gloves and a mask. I came to learn that those measures were precautionary, meant to protect him.  I came to wonder so innocently what exactly it was that we were protecting him from. Shortly thereafter, I learned the harsh reality of this disease.

Drew is 5 now, and I want to share with you what it feels like to live with CF and the ever-present threat of a new infection. The anxiety of bringing my son into clinic is great. We put on a mask before we exit our car in the parking garage and we push the buttons on the elevator with our elbows. My mind is racing as we stand in line at registration between two families that I know from the CF community. Immediately after we sign in, we are roomed for infection control protection. Its such a relief to be in there. I trust that the room that we are in has been cleaned before we are in there because I trust my care team, though no one explicitly tells me what has been done to ensure my sons safety. As the mother of a young child, I wonder if they’ve wiped down every button that he finds, the floor that he will inevitably be on at some point because he is a 5yo boy.  I worry about how the acquisition of a simple, easy to treat bacteria will change our treatment plan, how it will impact our schedule. I wonder about how we would handle the news that it wasn't a simple, easy to treat bacteria. I wonder what it would feel like for something to just remain the same. Where do I get to share my concerns? How can I join the conversation on how to make things better?

I want to tell you about my struggle with this as a mom, a CF mom. I'm always in a state of wonder about whether the choices I'm making are the right ones, for my son with CF, for my other kids, for my marriage, for our life. The information that I receive from my clinic is just one piece of what I use to shape my opinions and make my decisions. Patients don’t often see the slides that Adrienne just shared, the profound impact that infection control measures can have on outcomes. Patients don’t always know that a special negative pressure air filtration system has been put into place in their clinic, and if they do, the clinical benefit that is being recognized. They see more limits placed upon them, more boundaries that they are forced to work within. How might we change that? If we can both contribute, we both learn more.

When I Google Infection Control in CF, my options are to read an 80+ page document from the CFF, some outdated journal articles,  or a handful of blogs with information varying from totally in line with to totally against the CFF recommendations. To be clear, i’m totally in line with the recommendations. Knowing that we have data on what can help to reduce the spread of bacteria which ultimately translates to a higher quality of life for my son is good. Understanding how it’s being implemented and learning together with my care team where we can improve would be better.

For our family, we've identified priorities and built life plans and work plans and treatment plans around them.  And with an upcoming appointment or new test results hanging in the balance,  I wonder how our priorities will have to shift, who will be disappointed, how we go forward.

It could be something small, easily treatable, that he acquires next. My heart aches when I have to break the news that we have a new medication. I'm feeling guilt for adding to an already overflowing schedule. I'm thinking about the 5 phone calls over two days it will take to coordinate the arrival of the medication to treat it, and how I will have to put the daily school report from my kids on hold due to an untimely callback despite my best efforts to coordinate this while they are at school.  I feel shame from having to cancel volunteering in my daughter's classroom or miss a field trip. I'm so disappointed that he is so disappointed that I have to change our sport schedule so that we can add just one more thing to our day. And I immediately wonder what I could have done differently. While I know its almost impossible to ever know how a bacteria was acquired, I wonder. What if I had made a better effort, done something differently. These are the things that are going through my head when we go in for an x-ray and the technician isn't wearing her contact precaution gear. This is what I worry about when we have to go into the PFT lab, having read the research available on infection control that seems to indicate that most outbreaks of infection have happened inside of that PFT lab. These guidelines certainly limit the spread of infection, but they don’t eliminate. I don’t want my son to be part of the next outbreak that we are reacting to.

I have to carry the weight of the risk, even if its a low risk, against the impact on my life. This is the constant struggle of a CF mom, rebalancing of priorities, trying to normalize our life thats far from normal. There is almost always more to do and never more time to do it.

If we have information available on how to limit the spread of infection in our clinics then we must take action to implement. Where you live and what you know should not determine whether or not you survive. We have an obligation - you in this room, and me, and the folks who might be watching this livestream - we have an obligation to do all that we can, because my sons life depends on it.

When I recently returned home from short trip away from my family, it was the middle of the night and I was exhausted. As I always do, I went in to the rooms of my sleeping children to kiss them goodnight before going to bed myself. As I pulled up the covers and touched his sweet forehead with my lips, I could taste cystic fibrosis on my son. He was sweating in his Toy Story pajamas, and a little crust of salt had formed around his hairline. Its this. Its the simple kiss on his forehead that reminds me that he might not be here forever. Its the cabinets full of medical equipment and the medication nestled between the wine and chocolate syrup in my fridge that serve as a constant reminder that despite my best efforts CF is not something that I can control. I implore you to do what you can with what we know. Lets take the evidence that we have now try to get ahead of whatever might be coming next.

Fight Song

Fight Song from Erin Moore on Vimeo.

Letting Tomorrow Wait

This post originally appeared on the CFF blog

It's 10 a.m. on a Sunday and we have received notification of new test results. My son had the CT scan on Friday and I'm surprised the results are available so quickly. While I'm overly eager to enter my username and password to see what the report says, I'm equally hesitant knowing that these results might change our lives. I worry about how the results will change his treatment plan; how it will impact our schedules; how we will handle one more thing. I wonder what it would feel like for things to just remain the same.

This is my struggle as a CF mom. I'm always in a state of wonder about whether the choices I'm making are the right ones for my son with CF, for my other kids, for my marriage and for our lives. We've tried to normalize something that's so far from normal -- and while that's perhaps not the right thing to do, it's what we've chosen for our family. We've identified priorities and built life plans and work plans and treatment plans around them. And now with test results hanging in the balance, I wonder how those priorities will have to shift, who will be disappointed and how we will go forward.

The results could show something small and easily treatable. But I'm the one who has to find the time to manage that small thing. I'm the one who has to make five phone calls over two days to coordinate its arrival, keeping me from volunteering in my daughter's classroom. I'm the one who has to change our sports schedule so that we can add just one more thing to our day. I'm the one who has to reorganize carpool when we have to return to the doctor for a follow-up, and then have to pick up dinner on our way home because we just don't have time to do it all. I'm the one who has to answer the tough questions asked by my boy about why he has to do just one more thing.

And that's if the results tell us it's something small and easily treatable.

I'm really not complaining about all I have to do, because I often consider it a privilege to see the world through this lens. I'm simply highlighting my capacity to do so.

My time, energy and emotional capacity are not infinite and the cognitive burden of this disease is great.

It's Sunday, and I'm stuck between knowing and not knowing. While I usually have a "glass half-full" attitude, I've decided to wait until tomorrow for the change that may be coming. Regardless of the results, almost nothing can change today, so I'll live in this life for one more day and take whatever tomorrow brings ... tomorrow.

Curated Content for Your Viewing Pleasure

I've recently read some seriously amazing articles and blog posts from friends that I want to share with folks who read my blog. These people, though they may not have CF or even know what CF is, speak my language. They've found a way to put to words what so many of us, across disease boundaries, experience but simply cannot articulate. They're a bit all over the map but they're all so good. I've tried to include a preview from the posts, to share with you why I love them so much. I hope you'll enjoy them too!


A Mom Advocates for Wholeness in Health Care
“Health is woven into the cloth of life, and to divide it into separate pieces labeled ‘school’ and ‘work’ and ‘family’ unravels the entire fabric,” said Cristin. “Yet the very systems meant to support my son, Gabriel, often tried to do just that. Accessing and coordinating his services became a greater challenge than his actual condition.” "I’m not a doctor or a systems expert or a policymaker. I’m a mom. My only expertise is my experience."

Trapped in the System: A Sick Doctor’s Story
"There is no bad guy here. I love the drug company that created this medication. The price is more than reasonable. I love the doctor who prescribed it to me. My insurance company has never refused to cover my care, and has always been honest with me. The laboratory personnel are professional and competent. It’s the system — the way all these things work, or fail to work, together — that’s the issue."

How can I minimize my chances of having a disabled child?
"I am grateful to my "disabled child" for teaching me one of life's most valuable lessons: the importance of using our hauntingly brief time on this planet to do the things that matter, the things that will make a difference -- the things that are inspired by love and guided by knowledge."

Remember the mothers of sick children
For the rest of us who look at these mothers and think, “I don’t know how she does it,” know this: It’s not their abilities that are superhuman, it’s their love. It is this intense love for their child that pushes them out of bed every morning and forces them to keep going, no matter what odds are stacked against them.

Manifesto of the Brave and Brokenhearted

MANIFESTO OF THE BRAVE AND BROKENHEARTED 

by Brene Brown, Rising Strong

There is no greater threat to the critics and cynics and fearmongers 

Than those of us who are willing to fall 

Because we have learned how to rise 

With skinned knees and bruised hearts; 

We choose owning our stories of struggle, 

Over hiding, over hustling, over pretending. 

When we deny our stories, they define us. 

When we run from struggle, we are never free. 

So we turn toward truth and look it in the eye. 

We will not be characters in our stories. 

Not villains, not victims, not even heroes. 

We are the authors of our lives. 

We write our own daring endings. 

We craft love from heartbreak, 

Compassion from shame, 

Grace from disappointment, 

Courage from failure. 

Showing up is our power. 

Story is our way home. 

Truth is our song. 

We are the brave and brokenhearted. 

We are rising strong.

Hope as a primary motivator

School is finally off the ground and other than one mid-day pick up of a puking kid and a handful of forgotten lunchboxes, we seem to be off to a good start. I've had a lot more consistent time to work and to think about my work and what it is that I'm doing or hoping to do and how I'm hoping to do it.

MedicineX is coming up next week, and along with a panel of colleagues, I've been invited to share of my experiences with the C3N and the opportunity that I think it presents for the future of medicine. Reflecting on this - what is the C3N? What does it mean for me? And for you?  - really got me thinking about the purpose or value of all I'm involved with. What is the power of all of this? Why do I believe in it so strongly? And why haven't I been able to help others see what it is that I see with such clarity? 

So what is a C3N (Collaborative Chronic Care Network)? In my opinion, it is a way to organize new and existing stakeholders and resources in a disease community around a common vision to amplify value and improve outcomes. And what does that mean? That's the tricky part. I first thought that it was about tools; what do I have and use and know about that helps me, and how can I share that so that it can also help you. This is no-doubt valuable, but thinking deeper, how did I learn about those things, and how do you learn about those things. Or finding "the best" tools and resources and making them available in a different way. But much like clinical research, the value is not in the published paper buried inside of some journal or identification of what is "best", but in how that knowledge is applied, modified, learned from and spread. 

Perhaps one of the most valuable statements I've heard in regard to this C3N idea was a diabetes dad [sidebar: who is amazing] who said something to the effect of, "We (patients/parents) always need to know whats next, and no matter how much medical information the medical system gives us, we turn to our peers. We need their experience and their stories to heal us so that we can move forward." And then, I was reading this book by Brene Brown called "Rising Strong" (go buy it right now), and she talks a lot about how hope is or can be a motivator; "I’ve found that moving out of powerlessness, and even despair, requires hope. Hope is not an emotion: It’s a cognitive process—a thought process made up of what researcher C. R. Snyder called the trilogy of “goals, pathways, and agency.” Hope happens when we can set goals, have the tenacity and perseverance to pursue those goals, and believe in our own abilities to act." And I thought YES! Yes! That is it!

For a long time when I was one of the only parents involved in the CF group, we talked about needed more people like me. I remember hearing Paul Batalden at one point say that hope is the primary motivator for co-production and I think I’ve always had a lot of hope. But how do we help others to hope? I don’t think it’s that others don’t have hope and that’s why they’re not involved, but rather they feel powerless. C3N provides an opportunity to move out of that powerlessness, allowing that hope to help us to move forward. This is what I think we need to really pay attention to. If hope is the key, and I believe it is, then goal setting, tenacity perhaps through empowerment, storytelling and people connection,  and belief in our ability to act are where we should be focusing our attention and effort. 

Maybe this is where the power of MedX really lies. Maybe its not the cool innovators and disrupters who fascinate us with the novelty of their thinking, but the connection, the empathy, the shared humanity, the hope. Its the people like me in the trenches with our feet on the ground and our head in the clouds, both patients and clinicians and researchers, all sitting at the same table focused now on what we need to do next, knowing that we'll support one another no matter what and in any way we can. I cannot wait to be among my people next week!! I cannot wait to learn more about what their hope is motivating them to do, and how I can build on their hope in my only life. I cannot wait to laugh and cry with my friends from the internet, the people who I see but once or twice a year, yet feel closer to than some people I see everyday. Everyone deserves this feeling, and I believe everyone is capable of achieving it. We are the hopeful, and we will prevail! Here we go!!!!