Monday, July 7, 2014

Vacation

I'm on vacation and it feels so good. We're one block from the bay and two blocks from the beach. The weather is delightful. We're in a "No shirt, no shoes, no problem" kind of town. I'm writing this, only two days into our trip, so that I don't forget by the end of the week, when patience is low because exhaustion levels are high, just how good it felt, if but for a few days, to be on vacation.
Technically speaking, we will be "on vacation" for a whole month. We're not returning to Cincinnati until early August. We've started our trip in Stone Harbor at the beach for a week. Next we will head to Philadelphia, with a sidebar trip to Hershey, where I have a date with a good girlfriend and the Spa at the Hershey Hotel. We will wrap up our month-long vacation extravaganza in southeastern Connecticut before heading back to the midwest early next month, hopefully refreshed.
The lead up to this trip was a bit hectic. We needed new swimsuits and towels, sunscreen and water shoes. Medications needed to be ordered and shipped to arrive at the right place at the right time. I needed to coordinate schedules and hold the mail and pack a lot of stuff. So far, I'd say it's been worth it.
I've taken each kid for a walk, alone. I honestly don't think I've done that since my 6yr old was my only baby, and that was for a mere 18mo. We walked and talked, holding hands and making plans. We discussed favorite parts of our trip, which range from watching Frozen in the car to playing in the ocean with Pop Pop. They've each picked out a new hat and bough a little treat. I'm seeing how different they are individually than when they are together. I wish I had more time to dedicate to this. Often when I have an errand to run in the evening or on the weekend, I grab one kid to take along. This time we are spending together at the beach is different, because we've nowhere to be but here. We're just walking, exploring the island, and I love it.
I'm sure that by the end of July we will be ready for our own beds and our regular routine. There's something settling about falling back into your routine. There's also something real nice about being able to break out of it for a while. Cheers to vacation.

Thursday, June 19, 2014

An update on health and life

Drew had a clinic check up yesterday and I'm happy to report a clean bill of health. He has gained both pounds and inches, which has moved his BMI down to 61%, but it is still above 50th which is the CFF's healthy measure guideline. We hadn't done a culture in a while, mostly because his health has been good and also because we know what bacteria he is growing. I always wonder if something new might be there causing silent harm that we're unaware of, but knowing that an exacerbation is typically the culprit in lung damage and having not experienced that anytime too recently, we've forgone the test. It's a simple test, not unlike a strep throat swab, but the anxiety that accompanies it - the waiting and wondering and worrying, knowing that it's better to know while trying to embrace the bliss that is ignorance - that is the tough part. Drew doesn't even mind the test anymore, happily opening wide while I stick the swab down far enough to induce a cough without triggering a gag. I do the test at home for a couple of reasons. First, I'm perfectly equip to do it. Second, if we do it a week before our clinic visit, then we have the results to discuss when we go in for the checkup, versus having it done at the visit and then waiting for the doctor or nurse to call to discuss the results, catching me at the most inopportune times, like at the grocery store or while giving baths (both have happened).
Yesterday my husband took Drew to his appointment as I was out of town at a conference. The culture report wasn't final at the time that he was there, but it wasn't showing achromobacter, our nemesis and the bacteria that's been rotting his airways for the past year and a half. There was mild H.flu and normal oral flora, but no achromobacter. I knew that it would show up on the final report because it always does, but a little bit of me hoped that it wouldn't. The final report came through today and it did show mild achromobacter. Drat. I mean I knew, but I'd hoped. Such is life. Otherwise he is well and we are happy.
Work continues to move right along with the C3N work. We have patients in the CF Clinic in Cincinnati testing out the Orchestra platform  for self tracking and better communication between visits. We are meeting with the Telehealth Department next week to organize what we anticipate will turn into a pilot, allowing patients to participate in *some* clinic visits remotely. It's truly remarkable what we can do these days!
In other news, it looks like I will be speaking at the very conference where I was told just two years ago that the reason patients aren't invited is because they can be a distraction. The request that I received was in response to an abstract that I submitted called "THE VALUE OF PATIENT PARTNERSHIP IN IMPROVING HEALTH AND CARE IN CYSTIC FIBROSIS" and to quote the request, "We really think it is phenomenally important to hear from parents/patient pov." Yes, sir, it is.
The summer days have been both long and good to us. We are heading out east in a few weeks for a whole month! Our tour begins with a week in Stone Harbor, NJ followed by two weeks in the greater Philadelphia area before heading north to southeastern Connecticut to round out the month. Here's hoping we don't repeat our visits to CHOP in 2013 and 2012!
More news as it breaks!

Wednesday, May 28, 2014

"The Opposite of Loneliness"

I've started reading a great book called "The Opposite of Loneliness", and while it has nothing to do with chronic illness care or even health, I couldn't help but feel like these two quotes describe the spaces online where patients are meeting other patients and talking and sharing and learning and growing.
"It’s not quite love and it’s not quite community; it’s just this feeling that there are people, an abundance of people, who are in this together."
"We don't have a word for the opposite of loneliness, but if we did that's how i'd say I feel right now. Here, with all of you. In love, impressed, humbled, scared."
Does this not  feel like Smart Patients? It's not just for CF patients and caregivers. Patients and caregivers from any disease group, can join (if you're not CF, use this link). These are the groups that are going to change the face of chronic illness care. Patients, often known as the most knowledgeable and underutilized resource in the healthcare system, are in this this together, and we're going to change the world. 

Wednesday, May 14, 2014

Bigger, better, faster, stronger

Don't worry, i'm not about to break into a Kanye song. What I want to talk about is something that attention must be drawn to.

A few months ago, I was sitting in the waiting room at our CF clinic for a quarterly appointment and I was overcome with anxiety. As a believer in the importance of the new infection control guidelines, I worried that my son would pick up a new bug that would be as detrimental to his health. I started to tweet about it with the undertone of "there must be a better way". From across the world, someone in Australlia shared an awesome paper and subsequent link to a telemedicine study that was taking place in Australlia. I dug into a little, and then went back to Twitter, sharing my frustration that not only are we not utilizing these tools, but we're not even aware of them! Some colleagues saw my messages, directed at them, and shared them with the CF Care Team. They went back and forth over email, sharing the opportunities that they saw or concerns that they had with a novel tool like telehealth. After quite a few messages had been shared, the email chain was forwarded to the department chair who said "We will bring this to the CF center at CCHMC to be best in class". As it turns out, our hospital had just started a Telemedicine Department, and we scheduled a meeting to figure out how to start testing this model.

The total elapsed time from my first tweet through the commitment of the department to move forward with this model to the scheduling of a meeting: 2 days.

On Saturday afternoon, I was having a conversation with Roni Zeiger. Here's what I said:
" I'm thinking about novel ways to do research and disseminate useful info to patients and caregivers, and also to sort of advertise valuable research opportunities so that patients are aware of them. Right now, if someone wants to do research on CF patients, they [typically] go through the CFF and then they direct them to the centers where the center directors can pluck out who might be a good candidate for a given research opportunity. I hate this because the doc is deciding what I get and don't get to participate in through awareness alone."
Today, this was launched on Smart Patients: https://www.smartpatients.com/cystic-fibrosis/trials. It took only 5 days from the birth of this idea to design and implement the tool. (high five to Roni!)

While these happen to be examples of work that I've done, patients throughout the healthcare system (like Stacey Lihn and Justin Vandergrift) are innovating the exact same way. WE DON'T HAVE TIME TO WAIT. As I stated in an earlier post, I have a hard time leaving the fate of my kid up to researchers alone. I know and appreciate that a ton of great research is being done to find new and novel treatment options to help patients with Cystic Fibrosis, but it's not happening fast enough and that's not okay with me. It's especially not okay when we (patients and caregivers) are showing ways that we can do it bigger, better, faster, stronger....and for less money. The knowledge and expertise that we hold is under appreciated and under utilized. We are desperate to partner with doctors and researchers to create new treatment options and cure diseases, but they seem to be hung up on the fear of what could go wrong rather than looking at the opportunity for what could go right!

There's a great book that I read my kids from time to time called "The Whatif Monster" that i'd like to share some words from:
"Some Whatif Monsters like to hang out and fill up our heads with worry and doubt. They are sneaky and quiet and quick as a blink and the words that they whisper can change how we think. Jonathan James heard those words full of dread and all of those "what ifs" got stuck in his head." 
It goes on to show Jonathan in a number of situation that are influenced negatively by his fears: Climbing a tree - what if I fall? Jumping into the pool - what if it's cold? Playing baseball - what if I'm bad and the other kids laugh? Painting - what if it's ugly? Trying a new food - what if it's yucky?

BUT THEN, Jonathan looks that Whatif Monster straight in the eye and says "What if you're wrong?"! What if I made it to the top of that tree and I never slip or skin my knee? What if I jump into that pool and everyone thinks I look really cool? What if baseball is nothing but fun and I end up hitting a triple home run?

You get the idea. I fear that the Whatif Monster has infiltrated the system, and I spend my days trying to allay fears. The most admirable scientists and doctors, device manufacturers and insurance providers need patients to hold their hands and share their stories to allay those fears. We need to do this together.

Smart Patients

For the past couple of weeks, I've been working with the folks at Smart Patients to start a community for Cystic Fibrosis patients and caregivers. Smart Patients just launched this clinical trial search tool (https://www.smartpatients.com/cystic-fibrosis/trials) that I think is fantastic. While researchers and scientists may not love the idea of patients talking to one another about trials, it is happening and in my opinion it is critically important for them to both be aware of and appreciate. This peer-to-peer awareness and recruitment can improve the quantity and quality of participation by empowering patients. We can easily search for clinical trials, and rather than waiting for our doctor to decide to make us aware of one, our community can. And we talk about it! Smart patients is innovating around ways to help the rest of the healthcare system learn from patients. Imagine working alongside doctors and researchers to design clinical trials instead of just being participants in them! We can help to advance the learning!! If you're a CF patient or parent or caregiver, join us on Smart Patients  and lets get ready to change the world.

Tuesday, May 13, 2014

Striving for Ordinary

(This post was originally shared on the Smart Patients Blog 5/13/14)
“Courage is never to let your actions be influenced by your fears.”  ~Arthur Koestler
Last week I was invited to participate in a meeting in NYC with some of the CF centers in the state. I’ve been traveling more lately than I had ever really intended to as a stay at home mom, sharing our story and journey from awareness to participation, contribution, and finally ownership. I had the great fortune to have lunch with another amazing CF mom, whose children are now in college.
She spoke about how back in the early 90′s, right after the CF gene was discovered, she had created scrapbooks for her children to chronicle the cure that was about to be found. She clipped headlines from the NY Times and Wall Street Journal, magazines articles and photographs about the cure that was right around the corner. She shared her intentions to rent out Veterans Stadium in Philadelphia when they finally announced that a cure had been found.
And then, even with all of that hope, blow by devastating blow the realization came that there might not ever be a cure. The novel treatments that they were exploring weren’t working. The gene therapy that had promised to end this instead ended the life of the first person that it was injected into. The excitement about the discovery of the defective CFTR gene slowly died, as did much of her hope. She ended her scrapbooks and put them away. She’s still fighting, but it’s a different fight now.
When I returned home from my two day trip, 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. He was sweating in his Toy Story pajamas, and a little crust of salt had formed around his hairline. In fact as far back as 1857 a passage in the Almanac of Children’s Songs and Games from Switzerland warned that ‘the child will soon die whose forehead tastes salty when kissed’, an idea that was proven in 1953 when Paul di Sant’Agnese revealed the increased salt content of sweat in people with cystic fibrosis.
I got into bed and was unable to sleep, having just experienced a moment of real clarity. When I’m away, speaking at conference about cystic fibrosis, telling people that we don’t have time to wait, that my patience is not an option, I consider myself all consumed with this disease. But the reality is that these trips, these times away from my home, these are times that I get to live without the disease. I’m not administering medicines or listening for a slight change in his breathing or cough, fighting with insurance, or remembering to pack enzymes or hand sanitizer. I had considered myself to be completely engrossed in the disease when I’m willing to leave my family and take time away to share our story with others… but I was beginning to realize that these trips, subconsciously, were an escape from it.
It was a really humbling awareness, and then it hurt because I realized that I wanted to be away from it all the time. Not from him, but from the disease. I’m happy and energized and hopeful when I’m advocating. At home, I’m working all the time, frustrated and annoyed at how little control I have over the path this disease takes. I started to think about how my advocacy is perhaps providing important balance for me, allowing me to be a part of the disease while separate from it. While this is a healthy escape, the way that I wanted to escape again after kissing that salty head made me feel terrible. I love this family more than anything. I strive for ordinary, but the subtleties that make us extraordinary aren’t invited and add so much complexity. How can something that brings so much joy also bring so much pain?
Balance is important and it comes in many forms. Experiencing these emotions is helping me understand how I can achieve balance. I make it through my days with a humble awareness of shared humanity. While it feels good to run away, ignorance will swallow up the best parts of us. We are all fighting battles and we all need balance.