Tuesday, January 20, 2015

Creating the CF Care Model of the Future (for real, y'all!)

For many, many months now (as in enough months to make up years), I've been talking about how we can improve the current system for cystic fibrosis care. I've been testing and trying new things on my own, and dreaming about what CF life and care could and should look like. Here's a collection of blog posts with my thoughts on the topic (in chronological order) that also help to put into context some of what I'm about to tell you about:

The Difference Between Improving a Process and Creating a New One - http://66roses.blogspot.com/2013/04/the-difference-between-improving.html
A Collaborative Chronic Care Network for CF- http://66roses.blogspot.com/2013/09/a-collaborative-chronic-care-network.html

This is actually happening! Last week, I spent 2 days in Bethesda with 40 other folks - CF parents, patients, clinicians, researchers, industry innovators - all with the same desire: to improve both life and care in the CF community. 

The first step in creating this new system is to deconstruct the current system to better understand the components - whats currently working in CF life and care and what's not. We got (and continue to get) this information from the community - from blogs and Facebook groups and testimonials from the patients and families in the room. Then with all of this knowledge, we imagined what "the perfect system" would look like and collectively came up with our dream list which included things like:
  • 100% of patients and families feel that there is research happening relevant to their needs
  • Everyone has access to own personal data and a personalized treatment plan that is accessible to whomever they choose to share it with
  • There is mutual trust, collaboration and empathy where all patients/ families/ professionals think that their skills and knowledge have contributed to the decisions and actions that matter to them
  • No more waiting rooms
  • Doing your treatments should be like brushing your teeth. It’s a habit and there is no hassle.  It’s convenient and portable.
Over the next couple of months we will figure out if some of the targets we laid out are the right ones that can lead us to better life balance, health management and care coordination by finding or creating different solutions and tools to see how they might help to achieve some of our "perfect system" goals. There are many good parts about the current model of CF care that either aren't known about or aren't implemented properly, so we are going out into the community to learn more about what works, what doesn't, and what we need to do to create the CF Care Model of the Future. 

My goal of 2015 is to blog more, share more of this work that I find so amazing, and connect with people whose perspectives need to be heard. Twitter is an amazing vehicle for sharing, and the project is using the hashtag #CFBigIdea. Join us!! Another platform that we are using (which I will talk about in more detail in another post) is called Smart Patients.  The recent creation of Learn from Smart Patients creates a feedback look where clinicians can learn from the conversations that patients are having with one another, in a safe and privacy respecting way. The real value in this platform versus something like Facebook is that the conversations aren't happening inside of an echo chamber; we're starting to talk with the people that can collaborate with us to help us overcome the barriers we face [that they don't know we are facing if we only talk about them within a closed group]. Don't get me wrong, there is tremendous value in the empathy and support that comes from a group like CF Mamas. I in no way want any of this to replace that.

I want to talk to you, fellow CF mama warriors and amazing patients and patient advocates. The best way to reach me for questions/comments/concerns is through Twitter, I'm @ekeeleymoore (I'm into learning out loud so that others can reap the benefit - chances are someone else is wondering the same thing you are, and we can all learn something through having that conversation together) or via email at erin(dot)moore(at)cchmc(dot)org. 

Keepin' on keepin' on

It's been so long since I've blogged that I don't even know where to start! I guess I'll tell you a little bit about what's been going on with Drew, and then either after that or in a separate post share a little bit about some of the work that I've been doing lately.

I think I left off with the PICC that Drew had for IV antibiotics in November (seriously, how is it already January!). While the antibiotics didn't seem to make much of a noticable difference in his cough, the cycling of inhaled Ceftazadime and Tobi constantly since the PICC was removed has seemed to help. We are now at 3 hours of treatments a day. Every. Single. Day. Sitting through all of that with little to no complaining is Drew's superpower.

We saw the doctor in January for a clinic visit, and while our cough was nearly non-existant, nasal congestion was at a epic high since his sinus surgery when he was two. The doctor said that he was full of nasal polyps and it was likely time for another surgery. She referred us to his ENT for another opinion and likely scheduling of the procedure (less than pleasant I tell you).

At the NACFC this fall, Drews doctor and I had also talked a little bit about HGH (human growth hormone). Kids with CF often tend to have lower than average levels of this hormone and sometimes need a supplement. The supplementation is often useful in increasing appetite and weight gain, and during the conference we also discussed how it may be useful in promoting lung growth, something that we want and need. Drew has always had low level of HGH, but his growth is mostly on track, with BMI falling in the 50th percentile or above since he was about 6mo old (I still have the growth chart from the dietician from when he hit the 50th!). Well, a few months ago with his annual labs we found once again that his HGH is low. Prior to our visit, his doctor had consulted with his endocrinologist about whether HGH supplementation was necessary. This comes in the form of a shot (I'm not sure if its daily or weekly?) but I was dreading having something else to manage, even if it could help him. The even bigger headache, I feared, was the rumors that I'd heard about the difficulty of getting this approved by insurance. I've fought the good fight, and i'll do it again if I have to.

To my surprise, the endocrinologst almost laughed at the notion of putting him on HGH given his current growth curve. However, when our doctor shared some of what she had learned at the NACFC about it helping to promote lung growth, we all decided that it would be best to have a follow up appointment and look at all of the different things that go into making this decision. That appointment is coming up in March.

After the appointment, I started to think about Drew's sinus congestion. We hadn't been doing the nasal sprays as often as we should, but quite frankly given the new 3hr treatment times that we make him sit through, we have decided to spare him the nasal cleansing, which his absolutely hates. It sounds silly, but almost worth an awful one day surgery and a long span of no issues to forgo 30 seconds of screaming and squirming and spraying a series of medicines up his nose.

Then I had an "ah-ha!" moment. After Drew's last surgery, his doctor suggested that without regular cleanses he would likely need this surgery every 6-12mo. In thinking of alternatives, I signed him up for swim lessons. Drew has been swimming, at least weekly, since his last surgery, and then in November when he got his PICC and was out of the pool for 8-10 weeks, all of this sinus stuff returned. Well, I got that kid back in the pool faster than I've ever done anything in my life, and wouldn't you know, the sinus issues disappeared!

Because we had already scheduled the ENT appointment, we went, just this past Saturday, and the doctor said that he has no polyps and there is no reason or need for surgery. I told him about the pool, and he [who has poor bedside manner] not so politely stated that there is no scientific evidence that chlorine can shrink polyps. Now I'm no doctor, but 3 weeks prior there was a nose full of polyps, so many in fact that we were getting ourselves ready to schedule a surgery. We had tried some sprays and antibiotic drops that didn't so much, and it was not until this kid was in the pool that his nose cleared right up. I'm not suggesting that this will work for everyone, but I also don't want to dismiss the fact that it worked for us. I bet my YMCA membership would cost my insurance company less than a sinus surgery. Just sayin'.

Overall, Drew is doing really well. I would like to get off some of these inhaled antibiotics and get some of my time back, but right now it's working, so for the foreseeable future we shall keep on keepin' on. With registration right around the corner, the thought of Kindergarten lurking in the back of my mind makes me nauseous (thoughts for another post).

Saturday, January 17, 2015

Happy belated new year!

The blog is still a thing. Everyone in the house has a stomach bug. I have a longer story about how we're avoiding another sinus surgery, but the punchline is that we're avoiding another sinus surgery. My resolution was to blog more, even if it has to be just a few sentence update, I want to blog more. That's all i've time for tonight. Stay tuned!

Wednesday, December 10, 2014

Talk is cheap

I read this fantastic article the other day called Why We Are Getting Patient Engagement Backwards and it is so spot on I can't stand it. If you haven't read it yet, go read it now, I'll wait. .....waiting..... Now I will quote:
"Our healthcare system inadvertently, yet potently, discourages engagement. It ignores the fact that the patient is already the most engaged person in healthcare."  "As physicians, we expect patients to bring test results to an appointment – because patient information is often not shared throughout our complex and fragmented systems. We expect patients to remember their entire health history, and repeat it ad nauseum as our unconnected systems fail to share. We ask them to recount the complex names of the all the drugs they are taking – and at what doses. And it’s not uncommon for these questions to be asked many times in a single hospitalization, during outpatient visits, and again each time a patient encounters a new caregiver. The reality is that patients have no choice but to be engaged. They are provided these details in an inefficient way that causes a lot of frustration, worry and fear on top of already stressful medical concerns." "We need to think less about the patient being more engaged, and focus on how we can simplify, encourage and automate engagement tools on behalf of the patient."

I'd like to share with you why I've been missing from this blog for the past ~6 weeks. It is because I have been stuck deep in the muck of this broken system that I rely on for more than I should.

A few weeks ago we had made a plan with Drews doctor to start IV antibiotics, not for an exacerbation, but for a changing baseline. I am able to quantify his cough frequency through self tracking, and I've noticed that over the past couple of months he has shifted from having no cough to having a slight cough. Our plan was to be aggressive and to get him back down to his baseline while he wasn't exacerbating. So we spent two weeks running IVs around the clock from home. I had to share the "emergency kit" with school and our babysitter, something that must be with Drew at all times and emphasizes the seriousness of having a PICC line. I had to organize syringes and medications and equipment. I had to program IV pumps and order medications and supplies. I had to remember the dosing schedule and a list of things to look for that would alert me to a problem. I had to do all of this in addition to the rest of the CF care - 3 hours a day of breathing treatments, dosing 30 pills at mealtimes through the day, mixing our M-W-F medication and remember to clean out his once again polyp-y nose - and parenting of my three other children.

Unfortunately the IVs didn't make a notable difference, and we were distracted from the issue at hand by an exacerbation that followed our two weeks. Drew was up all night coughing. I was now calling the nurse who calls the doctor who calls the nurse to tell me that she agrees with my assessment that we should start a steroid. I told them that I thought he should be seen, and they saw him. In the midst of this crisis, it was time to reorder our regular monthly meds. We had plans to go to Philadelphia for Thanksgiving and I would need this delivered before we were to go. I made the call 10 days prior to us leaving, yet 3 days before we were still without. I called back and they were waiting for new prescriptions, only no one had called to tell me that. I called the doctor and then I called back to the pharmacy when the new prescriptions were placed. They couldn't open the prescriptions when I had called and said that they would have the appropriate person call me back. They didn't. I called back the next day, the day before we were to leave, and I insisted that the medication be overnighted with morning delivery so that we would have it before we left. I had to figure out how to get everything that I needed in between breathing treatments and calls with my sons doctor about his declining health.

We decided together that we could make a trip to Philadelphia for Thanksgiving, and with a nebulizer plugged into our car outlet we made the 9hr trip. Thankfully Drew got better.

We returned home to a letter from our secondary insurance letting us know that they were dropping us because we exceeded the income guidelines. I have to wonder if they looked at the cost of CF care - medications alone adding up to around $90,000 a year (thats before insurance, not our out of pocket cost). And that is when he is well! That doesn't include hospitalizations and procedures and antibiotics - don't even get me started. Our secondary insurance covered the cost of anything related to CF that was not covered by our primary insurance. And now, they would be happy to accept my challenge if I can collect receipts and show them that we spent $14,000 on our families medical expenses over the past 12 months. The best part is that I have to HAND WRITE THEM on a chart they sent and attach copies my receipts. Because I have nothing else to do with my time....

This brings us to today. I've got the flu. I haven't left my bed since Friday night. My doctor prescribed Tamiflu and we decided with Drews doctor that he and the rest of the family should be on it prophylaxis. We spent $250 getting this medication for our entire family, which now sits on the counter in my kitchen looking like a black market pharmacy, each child with their own dosing schedule, not to mention my husband or myself. We have medicine syringes to clean and more times to remember. We have it written out on a whiteboard in our kitchen that use to contain our grocery list but was hijacked when health needs overtook life needs.

I read this great memoir last week called My Foreign Cities where the wife of a man with cystic fibrosis shared about her role in their life, and a comment she made about care giving really hit home: "My field was large and nebulous - I had no idea how to do most of the things in it, and all I could do was try anyway."

Trying anyway! That's what we are all doing and are doing the best that we can! We are the most engaged in our health and care, knowing more about stuff that we never wanted to know than we will ever want to know. We are not the problem in this healthcare system to be fixed! Amazon knows when I run out of coffee and it shows up at my door, but it takes 5 phone calls and a headache to get a prescription refilled, one that we have taken and will take for the forseeable future. I am the one tracking my sons health, knowing which protocols work for him and which do not. I am contributing to his health, and I am rewarded with more burden, as he remains unwell. I cannot even coordinate a visit to see two doctors at the same time, despite the fact that they work together, because of a billing system. It has nothing to do with their schedules, or more importantly mine.

This summer I participated in a project sponsored by the Agency for Healthcare Research and Quality. The report is out and it addresses some of these issues as they relate to data connectivity. I don't believe that technology is the answer, but I do think that it can help. To quote the acting Assistant Secretary for Health, Dr. Karen DeSalvo, "Data sharing is a critical piece of this equation. While we need infrastructure to capture and organize this data, we also need to ensure that individuals, health care professionals and community leaders can access and exchange this data, and use it to make decisions that improve health." Here's the report if you're interested in checking it out.

There has got to be a better way folks, and talking about "Patient Engagement" is not the answer. I want to see action. I hope that some of the recommendations put forth in that report will be taken seriously and help to start the change that this healthcare system, this country, and most importantly my family so desperately need.

Tuesday, October 28, 2014

At least we have a plan!

I think that our baseline is changing. Every time Drew gets sick, with some combination of antibiotics and therapies we seem to be able to get him back to his baseline, which is cough free. In CF, this is important, because one of the most recognized causes of lung damage is exacerbation, and symptoms typically mean that something is going on. We've been off of IV antibiotics for as long as we have ever been - last time was January! - but I think that it's time to start them again. I had a long talk with his doctor yesterday about new symptoms that I have noticed. He is not sick right now, but I have noticed an infrequent cough  happening, just a few times a day, but it's been around for the past 2-3 weeks. I have wondered if it is seasonal allergies, or perhaps a touch of asthma that could be treated with an inhaled steroid, but with some small changes the cough seems to remain.

So what do we do? Some people would suggest that his baseline has changed and he now has a little cough as his baseline. I'm not "some people" and I'm not ready to settle for that until we have exhausted our options in an attempt to return him to his cough-free state. We could try oral antibiotics, or even inhaled, but the bacteria that Drew has in his lungs (achromobacter), is highly resistant to just about all antibiotics. IVs are stronger than oral, and if we want to give it our best shot, we feel that this might be the way to go.

You might ask why we treat when he's not sick. Here's the best way to explain it. Imagine a barrel that we will pretend is your lungs, full of water that we will pretend is bacteria. The barrel can only hold so much before it begins to overflow. Usually, overflow is point where we would treat because we see symptoms. Antibiotics would reduce the amount of bacteria in the barrel and take it down to a level that is no longer overflowing (let's say half full since CF lungs usually have some kind of funk in them causing silent damage). So now imagine that we are in that silent damage phase, perhaps more than half full but not overflowing. And now if we treat with antibiotics, we might be able to lower the level even below the half full point and help to keep those symtoms or overflow from coming back for a longer period of time. Of course there is the possibility that this won't work and he will just have a cough from now on, but there's a reasonable chance that it will and that's what we're going with. I talked to his doctor about this for a long time yesterday, and we decided that being aggressive is in his best interest. It's certainly not what every doctor or patient would choose, but we're going to give it a try.

We hope to go in for our PICC on Friday, November 7. I am going to be out of town most of next week, and running IVs from home is both mentally and physically exhausting. It's definitely not something that one parent who is in charge of 3 other little kids in addition to the one on IVs should have to do alone, so we will wait until I get back. I don't know yet what antibiotics we will be on, but have another post coming on quality improvement type stuff where I will talk a little bit about that. I hope that they're every 12 hours because those every 8hr treatments are so draining. In an effort to avoid even more antibiotic resistance, I think we are going to try inhaled Tobi or Cayston for the week leading up and the two weeks following so that he doesn't get 6 weeks straight of Ceftazadime, the one antibiotic that this miserable bacteria still seems to respond to.

This sucks, but I feel like going into this with him well, and having a week to mentally prepare for a PICC and our crazy hectic life when Drew is on IVs is a nice way to do it. When he is sick and we get thrown into a tailspin, it is much harder to find our footing and regain composure. I don't know if this all will work or not, but I'm hopeful that it will, and at least we have a plan!

Monday, October 20, 2014

A day off

I have today off. Well, mostly off. I have set a regular work schedule for myself in an attempt to accomplish all that I want to while maintaining the much needed balance in my life to feel at ease. I have a nanny who comes on Mondays and Wednesdays and I've been trying to schedule most of my meetings and work during the times that she is there. I have some afternoons as well, when most of the kids are at school and the ones who aren't are sleeping, that I'm happy to take calls and roll up my sleeves. The problem for me with all this work that I've been doing (which I must add that I do love) is that I'm a stay at home mom. I already had a full time job when I slowly acquired a second one. I found myself working around the clock, quite literally, answering emails and taking calls, and my kids noticed. Patience was low, stress levels were high, and time-outs were reaching epic levels. That's when I realized that too many time-outs were the result of not enough time in. All these kids want is my time and attention, and if I didn't figure out a way to balance all of my new work with all of my current work, we weren't going to be a happy bunch.

The kids were off school on Friday, so we packed up the car around 9am and headed to the Children's Museum, followed by lunch and an afternoon trip to the Nature Center. The weather was beautiful and we just wanted to be outside, with no agenda. That night, there was a fall carnival at their school. We had dinner there, and then  played enough games to fill us up with carload of junk for the ride home. We had friends over to play on Saturday, and a birthday party with more friends on Sunday. We all spent 3 days together. I'm not going to lie and say that it was all fun and smiles, but I noticed an improvement in attitudes and a drop in our time-out rate. If I could put this into a pretty little chart, the Quality Improvement folks that I work with would be proud.

I hadn't opened my computer once since Thursday afternoon until last night, and even then, it was only briefly. So when this morning rolled around and our nanny knocked on the door at 9am, I had plans to find a quite place to sit and get back to business. But my calendar was free! I had nothing scheduled today, and it has turned out to be just what I needed. I ran a few errands, I did some things just for me, I spent the last hour sitting in Starbucks plugging away at the blog, and it feels so good. I am refreshed. I am not short on time today. I'm not rushing anywhere, and I think the kids will notice. When I pick them up from school in 30 minutes, I won't be fresh off a conference call or trying to tie up loose ends while they vie for my attention to tell me about the picture they drew or the game they played or the homework they have. We have a birthday party for a stuffed animal taking place today at 4pm, and I want to be there, in body and mind.

I feel guilty about working, about being away from them, even though I absolutely love what I do. They aren't going to be little forever, and they need my time and attention and I want to give it to them. In talking to a friend a couple of weeks ago, she used the term "mission path" to describe the way that she remains focused on the work that she wants to do. I've thought a lot about that, and have tried to focus in on what it is that I want to do. In work and in life, if I'm asked to participate in something that is outside of my mission path, I think seriously about the implications of choosing whether or not to participate. I don't think my mission path is well defined just yet, but I think I'm getting there. I actually said no to a couple of really great opportunities in November because my family is my priority, and I think that's a step in the right direction.

I am going to schedule a day off from time to time, and I'm going to appreciate how it refreshes me.