CF 2.0: Living Life As A Pariah

ready for the day

ready for the day

I’ve already ranted here about a new Cystic Fibrosis Foundation (CFF) policy, infamously termed the “one person rule.”  If you don’t want or have time to ready the previous post, here is the policy in a nutshell:

If you have CF and are attending an outdoor event sponsored by the CFF, you must stay 6 feet from another person with CF.  How you are to know whether another has CF or not, I have no clue.  Listen for coughs?  Look at fingernails?  Just ask everyone in your vicinity for their genotype? Sarcasm intended.

If you have CF and are attending an indoor event sponsored by the CFF, you had better have been invited by the sponsors, because only one person with CF can attend such a function.  It doesn’t matter the size of the venue…convention hall or boardroom.           ONE PERSON ONLY.  Oh, and you have to be invited to be that one person.

I obviously have an opinion about this but I won’t go into it again.  I am not the only one opposed to this new policy, however.  Here is an excellent discussion of the matter in podcast form, between one of my CHEST article co-authors, Steve Shepherd, MPH, and one of the members of the CFF infection control committee, Dr. Manu Jain.  If you are inclined to read journal articles, here is the complete CHEST point/counterpoint debate:  Complete Point Counterpoint Chest April 2014.

Now then,  at last I will come to the topic at hand.  There are definite unintended consequences to this policy, AKA collateral damage.  Not too much coverage is given to the psychological effects such policy will have on those of us with CF.  I think it is important to consider such effects, and I would hazard to guess that these were not discussed much amongst the infection control committee members,  only one of which actually had CF…alas, a former employee of the Foundation.

Just this weekend, it was made clear to me that my handling of “snack duty” for my son’s team was a concern to a mother of a child with CF who was also on the team.  Snack duty.  As in, putting Gatorade bottles into a cooler, along with whatever I buy at a grocery store or bagel shop.  I certainly understand this mother not wanting me to drive her child in a carpool, which was also made clear to me  (like I would ever do something so completely stupid), but…snacks?  Really?  Is it  more likely that her son would catch a bug from a Gatorade bottle wrapper that I might have touched than if he drinks from a public water fountain? I am trying to put myself into her shoes, asking what I would do if my son was the one with CF.  The thing is, I know that resistant bugs, dangerous to people with CF, are everywhere! They are in the ground, in your sinks, in houseplants, in air around construction sites, in medical clinics, in nursery homes, in hot tubs, swimming pools, dishwashers, drinking fountains, shower heads, they are EVERYWHERE!  But instead of taking practical measures to minimize all of these risks, we are being told to fear each other…and  people are freaking out.  Case in point, snack duty.

The end result was that I indirectly assured this mother that of course I wouldn’t drive her son anywhere, and that I will have my sister do all of the foodstuff “touching” that must occur on my snack day.  So I am a pariah.  Again.  This time, for a reason that I honestly think is complete over-reaction, and directly an effect of the infection control policies of the CFF.

This being a pariah isn’t new to me.   I’ve been a prohibited from attending CF events for years now due to growing MRSA in my sputum (which I got from visiting my father in an assisted living center…NOT from another person with CF).  MRSA is a very common problem for those of us with CF, as are several other multi-resistant bacterial “superbugs.”  These bugs are everywhere, because of the overuse and abuse of antibiotics.  Sadly, our lungs are like petri dishes from heaven for these infectious agents, and once they take hold, they are almost impossible to eradicate. Because of this, I can no longer physically attend research advisory board meetings (I take part by phone), give talks at CF education days, or go to the annual CFRI conference, which I used to love going to, not just for the information, but to meet and relate to others with my same CF issues.  No longer can I coach kids in person the way I used to. In short, I’m not invited…because of the bacteria in my lungs.  So I’m used to being that kind of pariah…not invited to be around people with CF.  But it seems to have reached a whole new dimension now.  Now, things that I have touched are uninvited…

I get it.  Cross infection is a big deal.  Nobody with CF wants resistant bacteria growing in their lungs. But what message are we sending children with CF?  As a former kid with CF myself, I know firsthand that they already feel…different.  They have coughs that turn heads. Their fingernails look odd. They have to take weird pills whenever they eat.  They miss school more than their friends.  Sometimes, they even have to go into the hospital…not to mention that they can search online anytime they want and learn their prognosis.  So now let’s throw the idea out there that they really can’t be around others with their disease.  Oh, and these “others” are really the only people in the world who know what they go through and understand their feelings about it.  They could be contagious to others and their friends with CF could make them sicker. Will there come a time when they are asked to use their own special drinking fountain?  Will their gym towels or team uniforms have to be laundered separately? Hell, will they even be allowed to be on the same team as another kid with CF? I wonder who’s going to pay for the psychotherapy?

But there are other more ominous unintended consequences.  What we can all agree to is that the most dangerous place for a person with CF to be is in a CF clinic or hospital ward with other patients with CF. This is historically where infectious outbreaks have occurred (not in convention centers), along with CF camps of old, where kids with CF lived in close proximity and shared everything from respiratory equipment to food to tents, etc.  The CFF has included numerous suggestions about how to minimize the risks in clinics and hospitals, and all are very good policies.  Yet, I have heard from more than one person who is now afraid to go to their clinic because of the “one person rule.”  And I can hardly blame them.  So the policies that are intended to protect us are scaring us away from healthcare.  Huh…maybe not so good.

Perhaps I am just thin-skinned (ha…that’s an understatement), and this shouldn’t bother me.  But it continues to bother me, and events like the one over the weekend (I’ll call it “snackgate”) does nothing to quell my fears about how this new policy will cause others to act toward people with CF.

What say you, CF world?


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Operation Exacerbation

Rule Number One that I hear myself telling people who are bummed out about their illness, whatever it is, is to remember, “there is more right with you than wrong with you.

And that’s true, right?  Think about it, by some miracle you are here on this earth, breathing, most likely able to walk around, enjoy food, listen to good music, pet your dog, watch Survivor…

Why is that?  Because most of the 100 trillion cells in the body, each of which are probably performing thousands of events per second, are actually doing their jobs perfectly well right now.  If not; well, you would not likely be reading this.

Now I’m not preaching here.  I am mostly writing this for my own edification, because I just learned that I am now infected with MRSA in my lungs.  I really can’t convey in words what happened in my consciousness when I learned of this last week.  Maybe you know the feeling that really bad news carries with it.  The sinking feeling in the pit of the stomach, the tight chest and throat, the heart racing and the blood draining from seemingly everywhere…  Sh_t!

Then the anger, and the self-pity arrive.  Sh_t (again)!  Why me, why now?  This is a REALLY bad time for this.  I’ve got plans, Universe!

And then, the tears.

So, now I’m officially a CF Pariah.  Gown, glove and mask everyone…here comes Julie.  Man, I’m pissed.  And of course, really what I am is scared.  What does this mean?  Is my CF going to get worse?  Will the freakin IV’s even work this time?

So, I allowed this to go on for a couple of hours.  Then, I was better.  Then, it came back with a full and serious vengeance over several days.  And now, finally, I’ve decided to respond instead of reacting.  Or at least…to try.

The first thing that came to my mind was to write the post I was going to write before the fateful telephone call.  It seemed to me that writing about having a “positive exacerbation” could only be credible if it were to be created during an exacerbation.

So, even though this is a slightly unusual (for me) situation, it is most certainly a “CF adverse event” and just as certainly would be best handled with a positive attitude.

Here are a few things I do to make my three weeks of IV’s…my “home vacation:”

1) First, since I can’t exercise strenuously, I don’t.  I legitimately and compassionately stop pushing myself.  A gentle walk every day that I feel like it is about as hard as I’ll push these days.  After the port goes in and the PICC comes out today, my arms will be free at last, free at last.  So as I feel stronger…I’m back to those kettlebells!  Have I told you about my favorite new exercise?  Something else to post about.

2) I have incredible friends who have been incredibly kind.  I will appreciate them every day, in some way.  By telling them what they mean to me, I will add positive energy to their world and mine.

3) Sometimes it takes a real blow to the illusion of stability to wake me up.  This has been a great one.  I will resolve to appreciate what is good in my life.  The best way I’ve done that in the past is to keep a gratitude journal, and vow to write in it every night three good things that happened that day.

4) I have a post that I have been writing in my head for weeks now about the growing importance of meditation in my life.  I have been trying to figure out how to stress this without sounding like a preacher…hence the silence about meditation.  But it has been SO key for me this last week, that I will write this post.  It will be the next one.  I will pour my soul into it, for both myself and for those two or three readers I have:-).

So if you like this plan, or if you have some suggestions, or if you’d like to share how you deal with your own “operation exacerbation,” please leave a comment!

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