Reaction: New CFF Infection Control Policy

I had absolutely zero percent interest in writing about this or sharing my thoughts on the matter. I was only going to share the new guidelines as I did this morning, here, and move on. What's sparking this blog is the responses I've been reading, receiving, hearing etc. Maybe what I write here will make it better for some and maybe it will make it worse for some.

[And now the obligatory preemptive strike. Everyone is entitled to their own opinion. How you feel about this and how it affects your life is valid. I respect the views of others. I'm sure there are other pleasantries that I'm leaving out that I will soon be reminded of. This is just my opinion, no more, no less.]

As many of you know who read this blog from time to time, I'm a pretty pragmatic guy. I see the world in black and white with very little grey. I like to focus on the rule and let others worry about the exceptions to that rule. I like facts. I prefer for others to give me straight talk and I appreciate that in return (Just ask my wife). I'm more concerned with the solutions to the problems than the problems themselves. I'm also a pretty visceral guy. Not in an emotional outburst sort of a way, but in an inward, deep-thinking kind of a way. I like to think of unintended consequences. I try to understand someones motivation rather action taken or not taken. I like to debate just to hear the other side, even if I agree with it. I will often not respond during a conversation because I'd rather respond with how I really feel than respond with how I felt in the moment.

Anyway, that's where I'm coming from with this.

So what was my first reaction when I received the email from the CFF regarding the email? Honestly, I said to myself, "Ok," and moved on with my day.

As I started thinking about it more, and with the assistance of the thoughts from others, my opinion has evolved, but maybe not by that much.

Here are the facts about cross-infection:

1. People with CF can get each other sick by spreading different bacteria.
2. New evidence suggests that this may be a bigger problem than once thought.
3. New evidence suggests that the bugs can "hang out" longer than previously thought.
4. New evidence suggests that droplets can go further in the air than previously thought.
5. CFers getting new bugs in their lungs that could potentially make them sick, even with their consent, is not a good thing.

Here are the facts about the CFF:

1. They are one of the best non-profit organizations around.
2. They have changed the way orphan disease research gets done.
3. Their job is to raise money.
4. Their job is to develop materials and provide some programs that support the CF community.
5. I would not be alive today without them doing what they do.

Here are some facts about me:

1. I've been to and spoken at 100's of CFF sponsored events both indoors and outdoors.
2. I've had good friends who happen to have CF my entire life.
3. I have a good relationship with the local CFF chapter.
4. I have no relationship with the national office and have never been to Bethesda, Maryland.
5. I'm not a cheerleader for the CFF.

Okay. So. What does all of this mean?

In short, the CFF can make whatever rule they want to make regarding what takes place at events they are running and/or supporting. There is absolutely nothing I'm going to say that will change the new guidelines set forth. They are not basing these on feelings, they're basing them on science, facts and research.

Do I think it's awesome? Of course not! But it's totally understandable. Who knows, maybe as we continue to learn more and more about pathogens, we'll be wondering why they didn't do this sooner. They are not doing this to protect themselves, they are doing this to protect us. I can understand if a business, or in this case a non-profit, doesn't want any part in putting us in a possibly compromising position.

So how do I respond? Well, at this point, I'm not sure. I know this though. When I don't like something, I don't turn to complaining, I turn to changing. If I think someone isn't doing a great job, I will try to take their job and do better. If I can't make a system run smoother, I'll opt to create a new system. If I think I can be better at x, y or z, I don't talk about it, I just do it. In other words, if I thought that a myriad of people with CF had to be at an event in order for it to be a success, I'd throw my own events with plenty of people with CF invited. But I don't think that. I think the CFF can still have successful events, and raise a ton of money, even while following the guidelines. (In fact, some CF centers have been enforcing some of these guidelines for years at their events [like CF Ed Days] already. Those events are still successful.)

I woke up this morning and these new guidelines didn't change my life one bit. There may be things that will change in the future with regards to my participation in certain events, but that remains to be seen. I'll still take the same precautions as I did before when hanging out with my friends with CF in the real world. Will my approach change with them? Maybe, but not by much.

I woke up this morning with a wife to love. I woke up this morning with a daughter to raise. I woke up this morning with bills to pay. I woke up this morning with a run to complete. I woke up this morning with 4 treatment sets to do. I woke up this morning with Cystic Fibrosis.

I have much bigger fish to fry. Now, maybe I'll just fry those fish 6 feet away from all of my fish-frying peers.

New Cross-Infection Control Guidelines

From the CFF...

We are writing to let you know that the Cystic Fibrosis Foundation recently implemented a new infection prevention and control policy for all Foundation events, meetings and offices to protect the health of people with CF. We took this step based on increasing medical evidence that the risk of people with CF spreading destructive germs to one another is greater than was previously thought. Our new policy reflects the advice of leading medical experts on this subject.

The health and well-being of people with CF is our topmost concern — it is at the heart of all we do. We have long had infection control guidelines in place to promote the safety of people with CF. With this new policy, we are acting proactively and immediately to reduce the risk of cross-infection among people with CF. 

The key elements of the Foundation’s new policy are: 

• At any CF Foundation-sponsored indoor event or meeting, including gatherings like committee meetings, only oneperson with CF may be present and he or she will be designated in close consultation with event chairs and key event volunteers.
  
• At Foundation-sponsored outdoor events or gatherings, people with CF need to maintain a distance of at least 6 feet from each other.
  
• Under no circumstances shall individuals who have ever had a confirmed positive sputum culture for Burkholderia cepacia (B. cepacia) complex attend any CF Foundation events, meetings or offices.  

We understand that these changes are disheartening and difficult for many in our community. Among the many burdens of CF is that of social isolation. We also recognize the unique challenges that our new policy poses to adults with CF, whose full engagement is vital to helping us better serve the entire CF community. The Foundation embraces and owes so much of its success to the active participation of people with CF in all our activities, from major fundraising and advocacy campaigns to informal meetings in chapter offices.

Fortunately, there are alternative ways we can make Foundation events more accessible to people with CF. We are expanding our use of teleconferencing and live videocasts so people can take part in group activities remotely. We are also exploring other new technologies to help us engage people with CF more creatively and draw on their talents and experiences to strengthen our collective efforts.

You can find more information about our new policy, including FAQs, in a new section on the Foundation’s website:http://www.cff.org/aboutCFFoundation/InfectionPreventionControlPolicy/. We will follow up with more information and resources as we implement these changes.

We are confident that, with the right tools and in a spirit of partnership, the Foundation will be able to put our new policy into practice successfully. Thank you for your help as we take this important step.

Thankful Thursday: Dwee Dwee & Dog Parks

It's thankful Thursday time! We all have so much to be thankful for and we love to take this opportunity just to write down each and everything that comes to mind. Please take this time to share with us what you're thankful for as well. If you have a blog expressing your thankfulness, please share the link! Without further ado, here's what we're thankful for:

Mandi's List:

I'm thankful for Josh and Chrissy living so close. We live about a half mile apart in the same neighborhood. It is SO awesome. We are able to ride our bikes to their house. What's so cute is now every time we take Mckenna on a bike ride (which is every morning) she says "JAAAAHHH" and "DWEE DWEE" (which is how she says "Josh" and "Chrissy"). The other nice thing is Josh and I are able to go to the gym together in the morning (4:30AM BABY!). So instead of going by myself in the early mornings, Josh and I go together! Ronnie hasn't been able to lift because of his elbow, so I just lift with Josh, instead of doing my core class I used to do at 4:40). It's really great time together. 

I'm thankful for my parents getting to enjoy life together. My dad is "semi-retired" (we don't know what to call him because he kind of is done working and could be retired, but is still looking to work/consult/something....soooo we're not allowed to call him "retired). Anywhoo, my parents have been having a blast together traveling, hiking, golfing, you name it. It makes my heart so happy to know they are able to spend so much time just having fun together.

I'm thankful for new words. Mckenna learns new words (what feels like) daily. She is such a little talker with a vocabulary well over 50...I'd guess if we counted it would be at least 75 words. She is so adorable to hear talk. My favorite is how quickly she learns people's names, remembers them, and asks about them later. Mckenna saw her cousin (well Ronnie's cousins' daughter) named Emi for the first time in a long time a couple weeks back, and now she asks for Emi ALL the time. Last week we saw our neighbors' daughter who's 4 weeks younger than Mckenna a handful of evenings in a row, and now every time we pass their house she says, "TEEGA TEEGA" (for Teagan). It is just the sweetest thing to hear her want to see other people and hear how she says their names!

Ronnie's List:

I'm thankful for dog parks. Mckenna and I spend many of our daddy dates taking in the various dog parks that our city has to offer. It's funny though, because although we have a dog, we don't take our dog. Nope, just Mckenna and I. We walk around the perimeter of the play area as she points out different dogs and giggles randomly. Her day is made when a dog actually comes over that she can pet. It's such a great way to spend some time!

I'm thankful for a better gardening season. This last gardening season was better than the season before. We successfully grew 3 different types of lettuce, spinach, carrots, cilantro, broccoli and cauliflower. It's amazing to me how much better garden-grown vegetables taste compared to their store bought peers.

I'm thankful for new experiences. I had my first ever adjustment with a chiropractor yesterday using a deal I secured via Groupon. He was a friendly guy, very funny and he cracked me up (cue audience laughter). Seriously though, he was very excited that I had never been adjusted before and was amazed by how many joints he was able to unlock. He was aiming to unlock 24 and I'm pretty sure I heard 24 pops.

So, what are you thankful for today?

Looking for some inspiration?

I've had the honor to present you guys with many guest posts over the years from various booty kickers in the CF community. If you haven't had a chance to read them, or maybe you're new here, I would highly recommend checking them out!! I've highlighted a couple below to get you started, but you can also use the "tag cloud" on the lower right side of this website and click on "guest post". After you've read a couple, come back here and tell me what you think! Any favorites?

Kicking Cystic Fibrosis!!

My "Declaration of Compliance"

Want to live a "normal" life? Inquire within.

"I can never imagine myself running!"

These are great examples of what some cysters and fibros are doing in our community to stay healthy. You'll see that they all have something in common too, but I won't spoil it by giving you the answer.

I can't thank the peeps who have contributed to this blog over the years enough. Their stories are always inspiring and it gets a little dull for all of us if we only post about me and my family. With that said, if you are interested in being featured on RSBR, please shoot me an email at ronnie@cysticlife.org. Let me know what you'd like to write about. Can't wait to hear from you!!!

Altered Couch to 5k Running Program

Since it's been so long that I have ran consistently, I decided to get back to a running program that slowly introduces mileage. This is adapted from the Couch to 5k program as it is a little longer in length with a more gradual increase in time and therefore distance. It can be altered further, and if you find that your alterations work much better for you, please let me know what they are!!

Enjoy!!

Random Ramblings

We don't really have anything new going on around here to report, but it's Mandi Monday, so by golly, I'm going to write a blog...rambling and random as it may seem.

Ronnie and I both posted recently about stepping up our exercise. We both have followed through. I have been lifting in the mornings with my brother at 4:30am 4 days a week, and then in the afternoons Ronnie and I do some cardio together or on our own at the same time. As we've probably posted before, Ronnie isn't the biggest fan of running with me (yeah, I know, it sounds harsh, but I get it. I am quite the peppy exercise mate, and when you're feeling like you want to die, peppy isn't who you want to see! HA!) So on running days, we do something independently (usually), and on cross-training days we do something together. It's been going really well and feels really good! I am so proud of Ronnie for pushing himself in his runs and feeling really good that I've been able to push myself to be up and at the gym at 4:30am!

Mckenna is a bundle of energy and emotions. It is so fun to watch her grow and change. Last week was a bit rough, full of tantrums. But we may have a solution (for now). Mckenna has been stuck between needing 2 naps and 1 for awhile now. Last week we tried going to just one nap, and man was it a long week. She was only sleeping for 1 hour for her 1 nap, and that was simply just not enough sleep. As of Friday we decided to just try for 2 naps again and see if she wouldn't protest the naps and sure enough, she did a great job. She went down for naps sooner after getting up and slept longer. I think she was just thankful that she was getting to sleep and wake up happy! YIPPEE!! Our little monster is at least better rested and is having only 20% of the tantrums...thank goodness! Oh terrible twos, how I'm not looking forward to you!

We are total Bachelor fans. Yup. I said it. We record it. We usually watch it with Josh and Chrissy on Monday's as soon as I'm home from my high school girls small group (that I lead...not that I am in..ha!) Josh usually sleeps or works through it, but comes to hang out. Although the last few weeks he has just stayed home to sleep since we've been up at 4:30am. All that to say, I'm SUPER excited to talk The Bachelor tonight. For those of you who don't follow it, tonight is the night he picks the final girl that he will be with forever...or the next 2-3 months :) We know it's silly and we know the show never finds love for these people, but we love it anyway! HA!

Other than that, everything is pretty much business as usual!