Monday, October 6, 2014

Don't. Tell. Anyone.



I have a great idea. Let's have a meeting. Let's invite all of the brilliant minds in CF - the scientists, the care providers, the people who dedicate their lives trying to understand the science to make this life better. Let's bring them all together, all roughly 4000 of them. Let's ask them to present what they know, to talk to one another, to create posters that display all of their amazing and literally life-saving work. And let's not tell anyone else about it. If you want to know about it, you have to have a medical degree. And even then, don't talk about it. Don't take pictures of what you're learning. Don't tweet what you hear. This is a closed meeting.

How will we learn more? How can we grow? How can we collaborate with the real experts, the patients and families who have their heads in the clouds and their feet on the ground! They're the ones willing to do anything! When they do get their hands on a medical journal, it sits at their bedside where they read it and re-read it and then read it again. They're the ones who have funded this research. They should have a right to it! They should get to decide what everyone gets to see and how everyone can share it. Even the work funded by drug companies! I am an investor. I need to take control of my kids outcomes. I have a right to this information. If anyone is going to accelerate the pace of this, it's us! Show us the damn data. I cringed when I saw a "no photos disclaimer" on the app for the upcoming meeting I'm attending. I wish it also said what would happen if you were caught breaking this rule so that I could make a educated decision on whether it was worth it.

Wednesday, October 1, 2014

Non-Compliance Anonymous

My name is Erin, and it's been 4 and a half months since our last clinic appointment. Why haven't we been to clinic? It depends who you ask. When patients aren't doing what the doctor tells them to do, it's usually identified as a lack of understanding, or a time or money issue.  For us, it's not any of those reasons. I think it's fear, mostly. Fear of what else we could catch in the hospital.
I meant to make an appointment for August, but it wasn't on the top of my "To-Do List" because Drew had been well. Then he got sick, but we handled it remotely - I emailed the doctor, we went back and forth a few times, sent a video, decided on a treatment plan, Drew got better, no need to go into the office. Then I actually scheduled an appointment for October. Next week in fact. But I don't know yet if we will make it or not. I have a babysitter lined up for the other kids. I think about going frequently. I guess I'm just afraid. I'm afraid to go and I'm afraid not to go, paralyzed in between putting his health at risk either way.
I've spoken with his doctor about this many times, with her explaining that she needs to know him when he is well so that she can better assess and treat him when he is sick. She tells me about the value of good infection control practices and how the risks have been lowered even further by moving patients at our clinic under age 5 to a separate floor where they are taken directly back to a room to avoid other CFers. She tells me about the CFF guidelines, and how being seen quarterly is known to be associated with better health outcomes. I know all of this. No one has really validated my concerns and offered to work with me on a solution that meets my needs.
I don't think that I'm better than anyone else, and that by working at the hospital I should have special privileges, not at all. In fact, I very much try step out of my role on the team when I am talking with my sons healthcare providers about an issue pertaining to his well being. That's tricky though, because the very expertise that I have as a mom is what helped to develop the role of Family Partner, and the entire premise of the position is one of patient & family real-life experiences and interactions with the healthcare system. I think that we're just in a different place than we were 10 or even 5 years ago, when a face-to-face clinical encounter or a brief phone call was the only way to communicate with your care team.
What I'm struggling with is the idea of non-compliance. I'm labeled by the CF clinic as non-compliant because they cannot check the box that confirms that I have been in to see them in the last 3 months. The box was created by the CFF, and is associated with better health outcomes. That's the part I'm pushing back on. There is no doubt that staying connected with your care team will help you manage your disease and achieve more of what you want to in your life. I just don't think that it always has to happen in real life in the clinic, especially given the new infection control guidelines.
I would bet that my sons doctors know more about him than many of the other patients in that clinic, regardless of whether they are seen quarterly. I have put a lot of time and effort into making sure of this. I track everything about him. I weigh him weekly. I contact them regularly with updates and questions and concerns. I use the tools that they have empowered patients to use to identify things like an exacerbation, and I work with them very closely, as his primary caregiver, to do what we need to do to keep him well.
They tell me that the risk of him catching something in clinic is low, but no one appreciates the impact that taking that risk, and failing, has on my life. He has complicated airways that may or may not make him more susceptible to pathogen acquisition. I believe that those complicated airways are directly associated with the complexity of treatment and eradication. It's flu season now, and we just got him over the 40lb mark. Excuse my language, but that was fucking hard work. Constantly thinking about, worrying about how to get more calories in, invisibly, and sticker and star charts and frustration and praise. If he gets the flu, we're taking two steps backward. I'm already operating at capacity, and my reserves are bone dry. And this new enterovirus 68 that's floating around everywhere, making some kids really, really sick. Not only do I fear for his life, quite literally, if he were to acquire that, but the quality of life for the rest of the people in this house that need me when I have to spend more time than I already do caring for my son if he should get sick.
I think that there is merit to my fear, data that shows how these harmful bacteria have been known to travel indirectly from patient to patient. Unlikely to happen with good infection control precautions, but this whole risk assessment thing is where I'm stuck. If your kids life were on the line, what kind of risks would you, should you take? Is the first step here admitting that I have a problem? Or is it identifying that there is a problem with the way that we think about compliance. I need to find a way to break the stigma associated with non-compliance, and I don't know that being compliant, taking part in something that I don't necessarily agree to be the best option for us, is the right way to go about that. I just don't know what is. Thanks for listening.

Thursday, September 18, 2014

Waze

Get the best route, every day,
with real–time help from other drivers.

Waze is one of the world's largest community-based traffic and navigation apps. Join other drivers in your area who share real-time traffic and road info, saving everyone time and gas money on their daily commute.
If you're not familiar with this app called Waze, I highly recommend it. We discovered it this summer when we drove from Cincinnati to New Jersey to Pennsylvania to Connecticut and back to Cincinnati. The reason that I bring it up is not to discuss traffic, but to think about something like this in the context of healthcare.

How can we create a Waze for healthcare? I think that it's everything that we need. It's consistent in that it always gets us to where we need to be. Waze understands my goal - to get from point A to point B. I have input. I can tell it to avoid highways, take the shortest route, or pass through certain cities. It recognizes that we have more power when we're moving together, and doesn't suppose that it knows all the answers. It's collaborative and iterative. Issue identification and solution creation is ongoing. And then there's the rewards! In the Waze app, you earn points for reporting accidents or confirming that a suggested workaround has achieved your goal. They're truly inconsequential in my life, but it feels good to get them, and they keep me engaged and contributing to the system, trying to find my way to the next level. 

I need a healthcare system that is consistent. What's "best" is relative. I don't always know what's best for me and for our situation, but the ability to plug in my goals and have confidence that there are many paths that will all lead me to achieve them is important. I need a healthcare system that I can learn from and that can learn from me. We all have very valuable knowledge and experience to share, and when we combine it all, together we can do great things. I need a healthcare system that gives me access to real-time, trusted, reliable information, from my community, my care providers, from other stakeholders with goals similar to mine - to improve health and care. I need a system that shows it's appreciation for my participation. Recognize my proactive approach to managing my health and reward me by taking away pre-authorizations or co-pays or other barriers to access and engagement and adherence.

The best part of this story is that I'm doing it. This is actually happening. This is what a Collaborative Chronic Care Network (C3N) for Cystic Fibrosis will facilitate. Email me if you want to be a part of this. I'm completely serious - erin (dot) moore (at) cchmc (dot) org. 

Sunday, September 14, 2014

Pushing the train

My life is not like your life. I doubt that many of you wake up everyday to the reality that you might outlive one of your children. We've been spending 4 hours a day doing breathing treatments because Drew is sick. We spent 4 hours a day every single day since last Saturday doing breathing treatments and chest percussion to bang out the mucus that is clogging Drew's airways. I emailed his doctor to give my diagnosis, and after some back and forth, and a shared video of his cough and breathing sounds, we agreed on a treatment plan. I went to CVS for prescriptions 3 times on Friday. I had to tell a 4yr old that he couldn't go to school two days this week because he needed to do his "breathies". It's the second week of school, and the weight of his disappointment was heavier to hold than the worry about his declining health.

The weather finally changed in Cincinnati, and while most kids were at the park or outside playing with friends, we were still inside doing breathing treatments. We walk this fine line of needing rest and needing exercise. The fear of the new respiratory virus in the community has kept us isolated. For many, it would just be a bad cold. For us, it means a likely hospitalization and who knows what else. 

We are overdue for our quarterly check up, and my non-compliance to the protocol has been noted. But let me try to articulate why I haven't taken Drew into clinic. He has a multi-drug resistant bacteria in his lungs. That is the reason that we spend so much time doing breathing treatments. These aren't optional treatments. He needs this medication to keep him alive. I believe that he got that bacteria from the hospital. And so while the risk of taking him into clinic for a well visit may be low, given the new infection control protocols and the fact that he wears a mask and grabs the first appointment on a Monday morning when there has been no CF traffic in the office for a few days, I struggle. I don't want to put his health at risk either way, by taking him or by not. But the implications that the acquisition of that one bacteria has had on our life has been profound. Even when Drew is well, he spends 2 weeks at a time doing an hour and a half of treatments a day, and then the next two weeks we add an inhaled antibiotic which takes our treatment time up to 3 hours day. When you add up those 3 hours, that is literally an entire day of every week that we spend hooked up to machines trying to keep him healthy. And then there's the impact that that has on the rest of our world! Marker on the walls? Mom and dad must have been busy with Drew. Forgotten homework? A "quick" call from the insurance company turned into something longer and even less valuable than agreed up when we picked up the phone and now there is a disappointed 6yo who got tired of waiting to show me her latest artwork. Playdates? Anyone sick? Our kids can't come. Exhaustion? An 8am meeting means we are up for the day by 6 so that we can get all of his treatments done, kids fed, lunches packed, babysitters briefed, and out the door on time. Schedules are rearranged around when treatments need to be done, and we try to do treatments around the very few activities that we are actually involved with. I wish we could be in soccer and dance and gymnastics and swimming, but remember we only get 6 days a week as cystic fibrosis has stolen our 7th. Those are the implications.

I worry about our other kids. Luckily, no one has known our life any differently as they are all so young and this is such a routine for us, and our people are sort of go-with-the-flow, but friendships are made and confidence is gained in some of those extracurricular activities that we just can't seem to find time for. We'd love to meet friends for dinner, but we never announce our plans prior to them taking place so as to avoid the disappointment that would inevitably come when we receive a text that one of our dinner guests has a runny nose and we have to cancel. It's exhausting to make it up as we go, changing plans on the fly and turning a relaxing night out with friends into a homemade pizza and movie night, complete with popcorn and sleeping bags. We, too, would like a break, where we get to socialize with friends over a beer while the kids act like maniacs in a restaurant where we will leave a big tip to thank them for allowing us to break free for a few hours. I'd just like to watch the news one night, or go to bed early and read a book. But before any of that can happen, we need to clean up. We have medical equipment that requires nightly sterilizing. It would free up my time if my pharmacy could work with my doctor to coordinate when pre-approvals would be needed, or to "God forbid" make an exception for someone who has a genetic disease that does not have a cure. For the foreseeable future, we will need these medications, and it would be nice if it was acknowledged that this is not a way that I care to spend my time. 

I worry about Drew's health when we need to replace a piece of drywall where a toilet leaked. While some moisture in the wall might not be harmful to most of us, mold could cause some serious complications for Drew. And then there's the super fine particles of drywall dust. As contained as we may think we are keeping them, I know that they're flying through our house. I hope that they don't cause any trouble. Traveling is another wild card. We are hoping to spend time with family next weekend in Chicago, a trip that has been planned for many months. Will the exhaustion of a long but no doubt fun weekend give way to another exacerbation? Is that worth it? 

I noticed the other day when we were leaving school the look that we had gotten from a group of teachers who heard  Drew coughing to the point  where he almost threw up. Yes, three seconds prior he was running around and laughing and playing, and then his little lungs couldn't keep up. That's the blessing and the curse of this wretched disease; he looks perfectly normal, but no one realizes what it takes to keep him that way. He hadn't been to school that day, but I had to bring him with me for pick up. I know a judging look, as I've given them before. I think people often judge that which they don't understand. These will be his teachers next year. Will I be able to help them understand? 

I'm going to quote a piece from Kelle Hampton's blog about fitting square pegs into round holes, because I feel a lot like a square peg in a world full of round holes.
Remember the movie Apollo 13? The astronauts’ lives literally depended on fitting a square peg in a round hole. Technically speaking, the lunar module’s round receptacles didn’t fit the command module’s square filters for carbon dioxide disposal, and CO2 levels were near toxic. There’s this scene where these NASA engineers go into a room, dump everything to which the astronauts have access on the table, and are given the challenge of using what’s on the table to transform the round receptacle to fit the square filter. It’s an impossible task, but these people are solution-based thinkers and their friends' lives are at stake. And they figured it outThey walked out victoriously an hour later carrying a contraption that was once a non-existent solution. They used duct tape and cardboard and creativity and determination and never once said “we can’t do this.” They did it because they had to. And as if fitting a square peg into a round hole wasn’t problem enough, you know what else happened on Apollo 13? They had to conserve power on the shuttle to get it home, so they cut all their resources down. No cabin heaters, no instrument display, no guidance computer, no ground control. No map of where to go and no one to tell them how to do it. Sound familiar? It’s called parenting. 
This is where I question whether all that I'm feeling is really because of cystic fibrosis. I can't differentiate between parenting and care giving because both were new to me within a relatively short period of time, and the role is all I've ever really know. I'm caring for my kids, sick and health, happy and sad. I don't deserve a badge of honor. I made a conscious decision to have children and it is my responsibility and honor to raiser them. Are others as overwhelmed as I am by our goals and ambitions and the lack of time to complete them? Do families not pressed with a chronic illness worry about what influences or shortcomings are shaping their kids? Am I the only one who feel like a square peg?

I know that I'm not the only one who feels this way. I know that because of the many wonderful people that I had the privilege to spend last weekend with at a conference called Medicine X at Stanford University. Many of them are also dealing with different health conditions. I also met many who were not. I met the people who weren't given nearly enough credit for being there - the care providers. It seems there could be no more two different groups that could collide in such harmony. The doctors who chose this path, spending years and years and lots of money and energy, making personal sacrifices just so that they could help others, and the patients, who never dreamed of being a part of the healthcare system and who want out of it worse than any of them can express. It's the humble awareness of a shared humanity that brought us all together, and was expressed so eloqently in a quote shared by Pam Ressler during one of the most captivating panels at Medicine X: "Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Thank you to the clinicians, for being there and for caring enough about the patients to dedicate your time and energy into improving the system. 

Before I end this ramble, I want you to try to put into perspective what it is that I'm trying to do in healthcare. I want you to imagine that I'm pushing a train. It's my train, and I've got two hands on it and I'm behind it, pushing it. And everyone that sees me, or even hears about me, will probably have something to say about me and my train. "Wow, that's amazing that she can push that train!", or, "I bet the train would go faster if she asked others to help her", or, "She shouldn't be wearing that to push her train", or, "What a fool for thinking she will ever get anywhere pushing that train." But what if the only way that you were allowed to talk about my train was if your hands were also on my train. And it's not about moving faster, though that could happen. It's about moving forward. I need to keep moving forward. I need to continue toward my goal, and when people say "Wait! We need to stop and make a plan!", or, "We need to have a meeting about this before we can move forward", I say no. I need to keep moving forward. Stopping does nothing but halt my forward progress, and once I stop, it takes a lot more energy to get my train going again. I am going to keep pushing my train and I invite everyone to join me, because I refuse to let my son become the victim of a broken system.

We, quite unfortunately, are immersed in the kingdom of the sick. I think that my mission in life is to launch our many experiences out into the world, so that I can both help others and in turn, help myself. 

Monday, September 8, 2014

"They don't care that you know until they know that you care."

Medicine X wrapped up yesterday, and my soul is full. What an incredible experience, to bring together all of the patients and doctors and researchers and drug companies and technologists who all share a vision for a better future of healthcare and are doing something about it. I'll be sharing lots of stories on here in the coming weeks, stories that were told and that need to be heard. In the meantime, here's a Storified version, or highlights reel for those unfamiliar with Storify, of what happened over the past 4 days:

Saturday, September 6, 2014

Medicine X Ignite Talk 2014

Good morning. This is Drew. He is 4 years old and he has Cystic Fibrosis, a genetic disease characterized by chronic lung infections and impaired digestion. He has a 50% chance of living to age 41, and I am here today for two reasons. First, because I am determined to beat those odds. Second, because I know I can’t do it alone.

Cystic Fibrosis is a progressive and fatal genetic disease that does not have a cure. I wake up everyday knowing that I could very well outlive my son. Think about that for a minute.

Receiving that diagnosis, and hearing those words “progressive and fatal”, thats tough. I was scared. I am scared! Terrified actually. But being sad and scared is not a productive place for me to stay.

Once we adjusted to our new normal, a life of medications and doctors appointments and hospital stays, wondering and worrying and praying, I set out on a mission to save my son. I listened to what the doctors were telling us, taking notes and asking questions. I searched online and read medical journals and news articles. I tracked everything, trying to learn anything new, something the researchers might have missed, and stumbled upon other parents and patients online who were doing the same thing. I joined advisory groups and quality improvement committees that I not only learned from but started to contribute to. I was becoming empowered by my peers, and I began to see how patients, working together with clinicians and researchers, true participatory medicine, could improve both health and care.

My son has a multi-drug resistant bacteria growing in his lungs that has had us in and out of the hospital for the past two years. The medical journals suggest that he will lose roughly 4% of his lung function every year. What I need is access to real-time, trusted, reliable information on everything from novel approaches to eradicate that bacteria, to reasons why having a certain pet could be detrimental to his health. I want to know what other parents know and have tried, and I want a doctor to weigh in on why those options may or may not be good for me. I want to hear about what tracking methods people use and how they connect with their doctor between visits, but even more, how its improving their care. I want other patients to feel empowered to ask about alternatives and suggest trying something new to their doctor, no matter how novel it may be. And then I want to work with the research team to develop the research agenda.

I’m here because I am trying to save my son’s life! Access to information like this, to people, to life saving treatment options, should not be left to the chance of a desperate parent or patient stumbling upon it on Facebook. We have a moral obligation to work together and organize this information!

To the doctors and researchers here:
I want you to appreciate that patients are more than just patients and that our lives are more than just our disease. I am a mother, a wife, a daughter, a sister, a niece, an aunt, a neighbor and a friend. I have experience as a marketer, a researcher, a photographer. I have sold Tupperware, makeup, knives, linens and Girl Scout cookies. I have served coffee and cosmos and jury duty. I am a volunteer, a blogger and an advocate. I work on our clinical care team as a Family Partner so that the perspective of patients and families who experience care in a way that you may never fully understand, is present in all clinical discussions. What patients and their caregivers bring to the table should be appreciated. We want to work with you. I implore you, let us help!

To the patients and caregivers: 
Be brave. This isn’t an easy life. It is tough, there is no doubt about it. But you are very capable and the rewards are great. There are many people like you. You can find us online, in support groups and wandering the halls of the hospital. You have so much knowledge to share, as you are an expert on you. Share that rich knowledge with your doctors and other care providers and with everyone you meet. Let your voice be heard, and lead the change that you desperately need.

This is Drew. He may have cystic fibrosis, but cystic fibrosis does not have him.