… or not? That was the question.

When you “live in chronicity” (or parent someone who does), you exist somewhere between those people who can make plans and keep them and those forced to mark every “commitment” down in pencil. For example, I recently took a trip out West to visit another CF care center (details to come soon). Up until the very moment I left for the airport I couldn’t be sure whether or not I would be able to go. Would Allison be able to hold out until her doctor’s appointment on Tuesday (and is it okay for me to not go, and send my husband instead?), or would all hell break loose before then? Obviously, my choice would be to stay with her when I know that she needs me, but given the bigger picture, and the task that lay before me on my trip, that was ultimately for her benefit as well. (Okay, I’ll admit a sanity break was in order for me, too.)

I went, I learned, and discovered that, in fact, life can somewhat be managed via Blackberry and conference calls. While I strolled down First Avenue, I got up-to-the-minute details of the doctor appointment and was able to contribute my two cents from thousands of miles away. However, it wasn’t the same as being there.

The news from that appointment: she has to get better in 14 days on oral antibiotics, or we’re putting her in… as in, admitting her to the hospital for no less than 14 days for IV antibiotics, lots of chest physio (to clear her lungs), rest and nutrition. Nothing like a little pressure hanging over your head. You may or many not be home for two weeks in the next several days. Left in limbo, you don’t know whether to buy groceries (watch those perishables), pack your bags, or beg to just be admitted now and get it over with. Get the the laundry caught up, make sure the bills are paid, call your friend and inform her that you may or may not be able to help her out after all (sorry about that ~ I know we set this up months ago, but what’s a mom to do?), and sit and wait. I can’t RSVP for the bachelorette party and bridal shower for a dear friend three hours away because I just don’t know what is going to happen.

Living in chronicity extends far beyond what happens in your immediate family; you learn who your friends are based on their reactions when you have to cancel plans at the last minute and when extended family lives in limbo with you because you just don’t know what could be coming down the pike. Not to say, however, that life is ALWAYS like this. We just hit a pretty rough patch every few years. And the reality is that no one is guaranteed anything. Ever.

So how does someone “Live in Chronicity?” With all of the humor, determination and stamina that one can possibly muster. Fueled, of course, by the lovely and innocent reason behind it all:

These are exciting times indeed!

The CFF wins again… sort of. It’s no small feat for the Cystic Fibrosis Foundation’s care center network to be recognized by The National Institutes of Health as a model for the delivery of care for those with a chronic disease. Even more surprising for some was the bold move to make public the data on each of their care centers. Read the highlights here.

I directly attribute the great achievements and recognition of the CFF’s efforts in providing quality care while using innovative means to search for a cure to the extraordinary vision of the President and CEO of the Cystic Fibrosis Foundation ~ Robert J. Beall, Ph.D. I’ve had the honor of meeting Dr. Beall on a few different occasions and I have to say I’m massively impressed with his dedication to finding a cure for my daughter. I realize he’s the frontman for a much larger team of players, but it means something more when you’ve actually seen his passion up close and personal. Which is why, when I get the form letter email from the Foundation about what Dr. Beall has been up to, I take note of what he has to say. I hope you’ll take this plea seriously, too. Today’s form letter read something like this:

Dear Friend,

Robert J. Beall, Ph.D., president and CEO of the Cystic Fibrosis Foundation, testified today before the Small Business Committee of the U.S. House of Representatives. He urged the committee to support research of rare diseases, such as cystic fibrosis.

Click here to view Dr. Beall’s testimony.

Specifically, Dr. Beall asked Congress to reauthorize the Small Business Innovation Research (SBIR) program, which provides grants to small biotech companies. He also urged Congress to dedicate a portion of these grants to companies interested in building drug discovery and development programs for CF and other rare diseases. Congress must reauthorize the SBIR program before it expires in September.

You too can make a difference—and inspire others to take action—by building a powerful CF Advocacy Task Force. Here’s how:

1. Register to be an Advocate.
   You will be notified when your involvement can make a critical difference.
2. Ask 5 friends or family members to sign up.
   As Advocates, they will help ensure that our agenda makes an impact in Washington, D.C. There is power in numbers.

Thank you for supporting our important mission. Together, we are adding tomorrows every day to the lives of those with CF. Sincerely,

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, MD 20814
(800) FIGHT CF
E-mail: publicpolicy@cff.org
Web: www.cff.org/GetInvolved/Advocate

P.S. Remember—register to be an Advocate and ask others to sign up!

Not being one to leave well enough alone, I’m constantly on the lookout for new and innovative ways to implement family centered care practices into our healthcare settings. Taking a page from the Project DOCC program, I began to contemplate the possibility of taking it to the next step: instead of addressing a broad range of chronic illness, target specific diagnoses and work with those specialists and teams that treat those specific illnesses. I spent several weeks mulling the options over and finally contacted Maggie Hoffman, one of the creators of the Project DOCC curriculum.

I was overjoyed to find that she not only understood the concept I was proposing, she had already begun working with other groups with various diagnoses to implement presentations specifically geared toward certain medical conditions. Maggie Hoffman, my hero and esteemed visionary, has agreed to partner with me to develop programs appropriate for Cystic Fibrosis Care Centers across the country. What a phenomenal endeavor we have agreed to undertake.

There remains a tremendous amount of work to be done – all in due time.

It comes as no surprise that Germany has been on the benchmarking bandwagon with regard to CF care and their numbers are consistent with those that we find in the US.  You can read here about the similarities.

But what about the countries who have little access to specialized care for those who desperately need it?  Keep up with this family’s journey to obtain proper medical treatment for their sons.

After the tragic (and possibly preventable) loss of their daughter, this courageous family is stepping up in Ireland to push for quality care for the cf population.

So from the Gaza Strip, to Ireland, and back to the US, we see families and caregivers advocating for quality care to obtain a better quality of life.  No matter where you’re from, who you know, or what you believe, as parents of children with CF, we are globally united in one mission:  to improve the lives of our children.   Together, we make a powerful force!

I’ve been “involved” in the world of CF for over four years now. In that time I’ve assembled a broad range of experiences that have helped to shape and define what I believe my role should be in this journey. In addition to my “regular” duties as a primary caregiver, pharmacist, nurse, doctor, respiratory therapist and Mom, I have taken on the additional responsibility of being a (volunteer) “patient and family advocate” within the hospital and community settings. I believe that without continual input and observations from those using our medical systems, we cannot continue to make progress in the delivery of family centered care and quality medical management of chronic illness. This is never more apparent to me than now, specifically pertaining to the level of care within our Cystic Fibrosis Care Centers.

The Cystic Fibrosis Foundation accredits 115 CF Care Centers across the US. These Care Centers must meet some basic standard requirements and follow general guidelines prescribed by the Foundation to maintain their accreditation. However, the specific methodologies surrounding the actual delivery of care and standard treatment protocols vary widely from one Care Center to the next. While the Foundation has taken on the enormous task of compiling “best practices” out of some of the top care centers (as defined by FEV1 and BMI numbers, among other measurable variables), they have neglected to include the parent/patient perspective in their benchmarking process.

It is imperative that we continue to raise the bar for CF care within our care centers by not only implementing those practices proven effective within our “healthiest” (on paper*) care centers, but also by focusing on education, parent support, and promoting healthy living activities. I believe that we can increase our position among other CF Care Centers (with regard to the measurable variables used to rank each center) if we consistently offer ongoing support our families, give them the necessary tools to increase and/or maintain their adherence and help them make the appropriate choices in order to lead healthier lives. With the movement toward family centered care in full swing across the country, it is nearly considered irresponsible to address medical issues only without first considering the implications that those issues have on our social, financial, educational, personal and professional lives.

I recently attended a conference in Anaheim, California for the Learning and Leadership Collaborative (LLC V). It is a consortium of CF care centers that have dedicated themselves to standardizing their clinic processes to implement quality improvement initiatives. It was really an eye-opening experience to have an entire room full of staff, physicians and families working so diligently in so many different ways to bring new ideas and fresh perspectives to the table. This year-long commitment involves establishing a core group of key care team members, holding regular meetings, having conference calls with coaches who have been through the process before, and focusing on breaking down and re-establishing standard protocols for specific and global aims. It’s a fascinating process from which our team has certainly benefited. We are highly encouraged to interact with other care centers and “steal shamelessly” from them what works, as well as learn from their failures.

As a CF parent, it became increasingly obvious that the “little” things that I felt had an impact on the type of care we receive from our center were not even on the radar of the Care Team as being issues for families. Every aspect of each appointment ~ from the physical space we are required to use during check-in to the forms we need to fill out to having vitals taken ~ contributes to your perspective of whether or not you feel satisfied with the level of care you receive. As caregivers, we need to have consistency, feel as though all members of the Care Team can anticipate and meet our routine needs while also being able to handle any emergent or unanticipated issues, and know that we are being heard when we have something to say pertaining to the health of our loved ones.

From my involvement in the LLC group and my own desire to have a direct impact on quality care, I began to establish a plan to connect with other care centers on a parent/caregiver level. My thought is that by physically experiencing what a typical visit is like at other Care Centers from a parent/caregiver perspective and by meeting with the core group of volunteer/parent leadership, I would be able to discern a set of “best practices” from each location and compile them into a final report. Thus, I prepared a “Traveling Parent Proposal” and presented it to our CF Care Center LLC group, some members of the CFF, our hospital administration, among others. The response has been positive and the plans for my first site visit will be final this week.

I am excited to embark on this new adventure and will post a synopsis of my findings after each site visit.

*”on paper” refers to the fact that although certain care centers have numbers that look better than other places, this could largely be due to the demographics (and challenges) of the population being served in that specific area as well as their ability to maintain patients waiting for lung transplants, etc. All measurable variables are, in fact, variable!