How Do You Protect Yourself From Encountering Another Person With CF

If someone with CF and I cough around each other...

“Being a person with CF, how do you protect yourself from encountering another person with CF? You don’t wear a sign on your forehead and you’re a really active person”

My Reply:

"This is honestly a really brilliant questions and many that most don't think about.

I try to not talk about my illness with others in person unless it's relevent, but I find that I name-drop having 'recent spine surgery' more than anything else because that's most often the thing causing a 'visible difference', whether not being able to bend down to pick up something heavy, or to sit in the ground in a certain way, or having to choose a booth at the restaurant instead of the painful chair.

If I could never talk about my illness at all in person, I would.

I would write about it here and no one in my 'real life' would ever know, because somehow that makes me feel like I'm 'containing' something that controls so much of what I don't want it to control in some nonsensical way.

Sometimes, I don't even explain that I'm Deaf to people if I know I'm never going to see them again, or if I can tell that the environment is one where I'll be able to fake it well enough (like if it's just a one-on-one conversation with a clear lip reading set up), because the energy it takes to bring up something that doesn't seem relevent in that moment becomes astronomical. Repeating the same elevator pitch over and over feels like being on a press tour, promoting the same movie.

The fact I can say everything I just said above IS, to many, something worth judgement. Being 'hearing passing' is not something I like or want to brag about - the societally-deemed privilige of being a speaking Deaf person comes with equal amount of hinderance (a thesis for another day, though I’ve perhaps written about this “too much” in the past).

We view being a Deaf person who doesn't "seem Deaf" through a Hearing lens, which is not how it feels or is for those who are profoundly deaf.

So, when it comes to the visibility around Cystic Fibrosis, I sometimes feel like a 'healthy passing' person to the naked eye (except for when I'm naked) because a lot of my scars are notable just when I'm in a bathingsuit or dance clothes, and the ones I can't hide as easily (my ICD scar and very prominent portacath on my chest) are covered depending on the neck line.

Even the scar on my actual neck from my cervical disc replacement is not super obvious (the first one, that is. I now know that scar is about to get a lot more interesting, as they'll be going back in through my throat for two discs, and I will have a neck drain sewn to my neck for a short time after, as well).

I have the benefits of having olive undertones to my skin yearround, which means a lot of scars and a lot of bruises blend in when they would be vast in vastitude on someone else. This could be seen as an advantage, but in thinking about this question... Then, in a way, none of the above is.

I used to be a lot sicker (before a surgery that helped my lungs a lot, a better arrangement of medications thanks to a better clinic, and a few other things that helped get me to become more active and less terrified of my own decline).

This means that, for a long period of time, my family could identify me in a store a few aisles over by the sound of my cough, and occasionally, they still can. For the most part, however, I have been able to maintain the miracle uptick in my lung function and get on top of new infections quickly enough that my numbers have not taken too large of a hit for many, many years now.

Although other things have declined (my liver, for example), and I slowly became worried about an increase in shortness of breath over the last couple of years, we are working towards a surgery down the road that should help the latter (I have to make sure to keep these lungs healthy at all costs), and I've continued to stay lucky overall.

I take antibiotics for sinus infections every couple of months, and I know I can't push off this lung-protecting surgery for long given all that it gave me last time (so much life, so much dance, so much improvement)... I am someone who is simply impacted much more in my digestion-related organs than I am via my airbags.

Does this mean I can keep ignoring the increase in negative symptoms?

Or that I shouldn't fight very hard to stay as active as I can, while I can, since it benfits me so much?

Or that I shouldn't always be worried about getting sick, because when I do I pay the price (sometimes permanently)?

I must be careful... Much more than I normally am. Frankly, even just when I had Covid a couple of years ago, it took me down so much more than those around me back then, and I was a scared, whiny puppy at my CF clinic days later because I had forgotten how bad it feels to not be able to breathe.

For those who don't know: Those with Cystic Fibrosis are not supposed to be more than 6 feet apart from one another, because if we cough or sneeze (which is pretty much our primary verb), we could spread deadly bugs to one another that would not harm someone without CF in the same way.

If I cough near my partner, for example, his body will filter out what it can, and he’ll be okay.

If he coughs near me, I might end up on oral antibiotics for months, or even intravanous ones through my port using homehealth.

If someone with CF and I cough around each other... One of us could accidentally contract a "super bug" we've been haboring for years inside (something that normal lungs rarely do, so don't worry), and thus give the other person a new condo of Cepacia they can't get rid of.

It's the long term housing of these superbugs that slowly breaks down our lungs or leads to continual sinus surgeries, and eventually recquires many CF patients to need a double lung transplant... If they are lucky.

I am the luckiest that I have not had a lung transplant before (just an experimental stem cell transplant, long before it become somewhat commonplace medicine - though it's still not covered by insurance) and I am not even orbitting that possibility, but most of us are one short-straw of an acquired germ away from a sudden and surprising delcine that leads to needing so, to put it too simply.

But have I answered the question in any way, shape, or form?

No... But I will tomorrow.

For today, I hope the exposition helped expose something educational to someone out there kind enough to skim this far, and I have to ask (for those to whom I promise to steadily work towards answering in this fashion):

What is a medical question you've always wanted to ask to someone but felt like it'd be too invasive?

Unless your name is B.S. Cepacia..

Your invasion won't feel bad at all.

Part One. More Tomorrow. (They connect)

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