Wednesday, August 25, 2010

Keeping "A Yard" Away Is Hard: My Thoughts on the CF "3 Foot Rule"

The CF 3 foot rule (or even further away if desired) is the agreed upon safe distance that the CFers should stay apart from each other since the risk of cross contamination was discovered in the early 1990's. (It may have been discovered before then, but that's when I recall noticing it as a kid.)

The purpose of this rule is to protect the cystic fibrosis community from sharing bacterium with each other, thus creating super bacterium bugs that are immune to our current antibiotic treatments. Think of the movie "Starship Troopers" going on within your body. Yuck.

It also protects us against contracting burkholderia cepacia (AKA b. cepecia) or MRSA from one another. These are two very nasty bacterium that some people within the CF Community have. They can cause a major decline in our health and - in the case of b.cepecia - prevent potential lung transplant candidates from getting on the transplant list! Of course, there are many CFers with b.cepecia and/or MRSA that are doing marvelously, but because these bugs affect everyone differently, people who knowingly have them are restricted from attending CF events. (At least b. cepecia patient are restricted. I'm not sure about MRSA, but I would guess so.)

Had we known about cross contamination sooner, perhaps some of the people with CF that we've loved and lost would still be here. Perhaps we wouldn't have some of the "super bugs" we currently have in the CF Community. It's little bit of wishful thinking on my part because I want my sister back so badly.

Separation from one another is a good thing for our physical health. Unfortunately, it wasn't until the invention of the internet that we'd regain the small piece of our lives that we'd lost. That piece that everyone needs: real life interaction with our kindred spirits. Relationships that only someone who has walked a similar path would truly understand. For example:

Cancer patients are very susceptible to illness while on chemotherapy, so they are kept a part from others. Hopefully, the chemo works it's magic and makes the cancer goes away (which kicks ass because cancer is a bastard that I don't wish on anyone!). If it does, then those cancer patients can reconnect with each other, embracing like long lost relatives, and showing solidarity by walking hand in hand at the Susan G. Komen 3-Day Walk for the Cure.

That's what we USED to do too...

Before the 3 foot rule, CFers were sharing hospital rooms, going to CF camps, holiday parties, and exchanging affectionate handshakes, high fives, hugs, and smooches. A lot of my sister's life was spent as hospital roommate with her CF sisters, swapping war stories, crying on each others shoulders, and holding each others hands during IV pokes and daily blood draws. This was her "CF family" who just "got it." But it's not like that anymore. Now it's private rooms, isolation, and doctors with masks and gowns that look like hazmat suits. It can make you feel like you are some kind of a freak with the bubonic plague. When the isolation protocol happened, it was a pretty tough transition for a generation of CFers who were so used to the close quarters and camaraderie. It's a security blanket that will never be here again.

When we CFers walk at the CFF's Great Strides Event it's at least three feet away from each other, but sometimes it feels like a mile.

To quote A Tale of Two Cities:

"It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness..."

Joshland Note: Is anyone else crying from laughter because I used the terribly cheesy sci-fi movie "Starship Troopers" and the classic novel "A Tale of Two Cities" in the same blog post? Sweet Lord, I hope so because I just realized it and I had to stop writing to compose myself. I'm glad I can amuse myself even while I'm being serious. Now, where was I? Oh yes, 3 feet...

It kills me that I can't give my CF friends a hug when I see them because I love them so much. Anyone who has ever met me knows that I'm the huggiest hugger that ever hugged. And, as I recently discovered, now it's even harder for me when I'm at events because those little CF kids love Moganko and want to connect with this puppet who makes them happy. That means they also want to meet the guy that he hangs out with (That would be me for those of you keeping track at home). Believe me, I'd love to be able to sit down and play with you or your kids without worrying about getting them sick. Sadly, I do worry. That's why I do my best to keep my distance...

But when you're in the moment, mistakes can happen. I'm talking to so many people and someone asks for something so genuine and normally harmless - a quick photo with a gentle squeeze or a handshake to wish you well. All of the sudden we'll remember we both have CF and sometimes say "Oh shit, you have CF!" At that point, I'll back away and politely excuse myself to go wash my hands. Or the CF kids who sweetly reach out to touch Moganko even though we are observing the 3 foot rule (I know we are because I measured my arm with Moganko on it and it's over 3 feet at my full puppet/arm extension). If they happen to touch or get too close for comfort, then I go wipe down Moganko while their parents go to scrub off the germs. I do the best I can, but I ain't perfect.

What about CF clinic appointments? CF readers, how many times have you gone to your clinic and wondered how often they really clean the waiting rooms or who was just sitting in the seat you are sitting in right now? What about touching the elevator buttons? What about the door handles? Holy hanna, if you were to dwell on it too much it would make your head spin! I don't usually wear a mask when I go to clinic, but I watch what I touch and where I sit because of the high traffic of CFers and sick people going in and out of there on a daily basis. It's so frustrating to live in "red alert mode" during those CF-related situations. When the first words out of my mouth aren't: "Hello, nice to meet you!", They're often: "Do you have CF and are you sick?"

I'd rarely ever act that way under normal circumstances. Do you think I'd say something like this to a waiter at a restaurant:

"Say there sir or madame, what do you think of the chicken here? Oh, and by the way, do you have cystic fibrosis? If so, could you make sure not to touch anything on my plate or slobber on my chicken? Thanks."

Sorry, I'm not that big of a germophobe. I have to live my life, for goodness sakes! I could get sick anywhere I go, but not going to fret about going to a public place just because I MIGHT get sick or run into another CFer. I can't control my environment, I can only control my reaction to it and do my best to prevent illness by washing my hands, covering my mouth when I cough, and keeping my distance from sick people.

If you have kids with CF, you need to take care of them. I get that. While I think it's really important to be cautious with your kids health, they also need to live their lives! They will get sick. It's a certainty. Find your boundaries by letting them explore the world. Let them build their immune system. Let them go play and get dirty. Let them be in sports or after school activities. Let them have sleepovers without worrying about germs at other people's houses. LET THEM BE KIDS! You only get one crack at that in life. I'm so glad my parents let me be a kid. It's one of the best things they ever did for me. Love you, Mom and Dad.

Joshland Note: I fully realize that some of my readers and/or their kids have immune systems that are compromised for one reason or another and, therefore, they have limited public activity. I have nothing but respect for you because I watched a life similar to yours through Angela. She was restricted too, but she did her best to be social when she could because she needed to live her life and feel normal. Be smart and do what's best for you.

The "living life" state of mind is why there are CFers that don't necessarily follow the "3 foot rule". They just live for each day and feel like if they don't give energy to things like cross contamination, then it won't happen. I see their point. Who the hell wants to live there life in fear? I used to be that way too. Most of the CFers I know who don't follow the rule are VERY RESPECTFUL of those that do. That's all we can ask of them.

Here are some of the well-meaning questions I've been asked regarding the CF 3 foot rule:

Q: Why can't you be around other CFers? You and Angie lived together and you both had CF.

Yes we lived together, but we were brother and sister, so cross contamination happened by circumstance. This happens with all relatives and it can't be avoided. However, CFers outside of our family circle have different bugs surrounding them that our immune systems might not be able to combat because it's new to our environment. It's like introducing an new animal into ecosystem that can't sustain it's needs. It wreaks havoc on that environment and can wipe out a whole area if it's not controlled.

Q: Can you (insert activity here) together?

We CAN do anything our hearts desire as long as we maintain that three foot distance. Sometimes we'll even don masks so we can get a little closer, but more often than not we stay away from one another to protect ourselves. The invention of the internet has given us blogs and social networking sites like Facebook, MySpace, Skype, and - the CF social networking site - CysticLife to keep connected to one another. Thank goodness for all of them! However, nothing will ever replace that face to face contact and those moments where all you need is a hand on the shoulder or an embrace to shelter you from pain that only another CF patient can understand.

Q: If cross contamination is so bad, can CFers get married?

Yes, but you run the same risks of swapping bugs and such as a family with multiple CFers in it. There are CF adults who have gotten married to one another. I say more power to them. Sometimes the heart wants what it wants and we can't control who we fall in love with. If they are happy, that's all that matters. They are adults and can make their own decisions.

Q: But weren't you all in the same studio for the "Breathe Song Event"?

Yes, but on different days. Each individual would record their part and then the crew would go through and sterilize the begeezus out of everything in the studio several times over before the next person came to record a day or so later. We were never really supposed to meet each other in person, though I saw Tess in the lobby as she was leaving and Rose and I had a drink one night at the bar where we sat at opposite ends of a table, which was very hard for both of us to do because she is a hugger too.

In closing, If you have CF and you ever get to meet me out and about, it's my top priority to be safe around you. It would absolutely break my heart if we got each other sick. I stay three feet away from you because I love you. Again: I'm not a germaphobe. I'm just taking care of myself. You would too if you lived my life and you've seen what I've seen.

Your best rule of thumb as a CFer is to use the "3 foot rule". If you choose not to follow that rule, please respect others who do and ask before giving that great big hug or firm handshake you want to give. Respecting boundaries is an important part of life, CF or not.

Check out my buddy Colleen's blog about cross contamination. She's much less wordy than I am. :-)

Peaceful Things, Lots of Love, and "Safe Distancey" Things,

Josh & Moganko


  1. ^_^ I loved this post! I must tell about the 3 foot rule to the big family (my parents and brothers now about them very well) people seems to not understand us too much, but we must have patience I guess ^_- post more please :) thank you so much for everything, you bright our days a lot!

  2. Good write Josh (thought provoking as usual)! I love the pic of you & Moganko at the top :)
    My little guy has MRSA, and I asked about cross-contamination and whether it was okay to bring him to CF events. I was told it was not a problem (only for b. cepacia). So we have gone to CF walks, but we too always maintain the 3ft rule (okay, really it's often more like a 6ft rule because I have become a bit of a germaphobe now...but for his protection and others). I would LOVE for it to be different, for him to get to really be friends and play with kids who have the same struggles. I can't imagine how much more isolated one must feel with b. cepacia. :(

  3. Love this always make me laugh :) So funny that I read this the day after Matthew's (he's 12) clinic visit because yesterday as we are getting off the elevator (no accessable steps to this office)another child and his family were getting on the elevator. Normally I would not notice this but the little boy in the group was coughing into his elbow but his elbow was not really covering his mouth. I could "see" the germs coming out and couldn't help but wonder if he had CF. Matthew has never cultured anything but staph aureus and I would love the keep it that way for a long time.

  4. I never knew the immune risks with CF and you that I really think about it, I should probably be more careful with germs myself with Celiac...I get EVERYTHING that comes around and I probably wouldn't if I wasn't so un-careful about germs and closeness--thanks for posting this..

    The internet Was the best invention for people like you CFers that have the 3 foot can talk for hours and never have to worry about germs! Hope you are doing well!! haha I LOVE the photo with the shoes..cute idea!!

  5. great post. i love your thoughts on the "shared environment" with your sister and how that makes a difference than cross-contamination with other cfers. I think about that often having 2 kids with cf. Your words may help me explain this to others who have asked me about the sibling thing! but i actually do wonder ALL the time when we are at the park and the kids start playing with strangers "how would i know if those kids had cf too!" --- what a complicated life we all live!!!

  6. Beautifully written. I was almost brought to tears due to my frustration in this particular area of the CF life. I'm very much a people person and I love connecting with people. I met a cyster a few weeks ago and it took every bit of will power not to hug her!

    I would say, for me, this is the worst thing about this disease... the isolation is worst than anything else it can throw at me.

    But you're right: thank God we have the internet.... it's almost the same. :]

    Keep posting!

  7. You're an amazing writer, Josh :).
    I love this post because it is EXACTLY how I feel.

    I'm a sophomore in high school. Last year, upon entering as a freshman, I learned that there are TWO other people at my school with CF; one my age, one a junior (now a senior).

    The one my age, who is a boy named Cole, is a really cool guy. I met him face-to-face once, through my school nurse, and we were like 10 feet apart. So anyways, he's really cool BUT he wasn't really educated on the cross-contamination thing. Need an example? A couple days after meeting him he invited me over to his house to go swim in his pool.

    No offense, Cole, but EWW.
    All I can imagine is pseudomonas everywhere.
    Needless to say, I'm smart enough to deny that request :)

    So we connected on facebook and update ever so often on our health and stuff. I've also told him how mportant it is that we stay away from each other, for our own health (believe me Cole, I want to hang out with you SO bad.)

    But yeah, there are those times where I want to invite my CF friends over and have a long, venting sleepover, because I feel very normal. But I can't. I'm extremely cautious when it comes to cross-infection; I carry hand-sanitizer everywhere, I wear masks when I'm in clinic, I'm constantly washing my hands. I guess its working, because my last PFT's were in the 90's.

    Anyways, this reply is getting long and drawn out. So, thanks for this blog post. It makes me feel less like a germaphobe :)


    P.S. *hugs to you*
    P.P.S. Say hi to your wife Carly for me! From Carly :)

  8. Great post, Sir Josh of Moganko Land.

  9. I just love you and all you do for our community. thank you

  10. I give the ol' "CF High Five" to all my CF friends when we meet up. Very much like the high five except we stop about 12 inches from each other's hand. It works :)


    1. This is so awesome a you are such a wonderful role model for us parents and our kids. Thx for being you!!

      AND- the CFF found that 3 feet is not enough. Sputum droplets travel further than that so they increased the guidelines to SIX feet now. Here's a link from Hopkins with the guidlines on page 4 under Ambulatory:


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