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CFers Have Odd Smells

This entry is part [part not set] of 19 in the series What CFers Do

Sweet SmellsThis post may not be for everyone, but I know my CFers and their spouses will know what this is all about: those CF smells.

We have a lot of them. Some are bacterial and you can smell it around our noses and mouths, some are medicinal and they build up and ooze out of our pores or exit in the bathroom right next to someone else, while others are just obscene bodily functions. Am I right, CFers? Am I right?

Here’s my run-down, and I’d love to hear if you all have different smells or different sources that create them.

  • Sweat – after enough time letting things grow after exercise or just a hot day, I take on a sweet, onion-y smell. It’s rather similar to a Subway sub with onions or a Philly cheesesteak sandwich. It’s not bad, but not something you want to smell all day, you know?
  • Sinuses – I get 2 smells out of my nose. One, I can smell, and I call it “wet dog” smell. That’s what happens when a certain bacteria up there takes over and signals that it’s time to get sucked out again. The other, Beautiful can smell, and she calls it “tomato soup.” We are pretty sure that’s Pseudomonas creating that smell, and it’s most prevalent in the morning when she wakes me up.
  • Lungs – I also get “soggy Corn Chex” in my lungs with good spasms that bring up gunk that smells like a breakfast gone bad. Another sign that I need more antibiotics. I’d say the hemoptysis situation is more of a taste than a smell, but it does have its precursors before it presents itself in a more outward fashion, as I got to test once again in California.
  • Skin – after a few days on IVs, I begin to smell like my medication all over. Just sitting on the couch and I get a whiff of Zosyn or something, only I haven’t had my does in 3 hours.
  • Number One – the docs always put me on tobramycin and one other med. That other med, not matter which one, does horrible things to my fluid excretions. When I was working in the office and would go to the bathroom, if someone else was in there, I’d walk back out and go to another one, because the smell is that strong. I didn’t want to have to get drug tested because I was on IVs – who knows what would show up in my tests?
  • The obvious: Gas – CFers almost universally have bloating issues. With how much intestine I had taken out at birth, I really experience bad bloating, but it’s gotten better since using Zenpep. My youth pastor growing up in Ohio called me woodsmoke – one of my many “flavors.”

Do you have different flavors or sources of the same flavors as me? This is definitely something that binds us. Parental stories not appropriate for mixed company will be moderated, as “poop” has been a favorite topic recently.

Ever-Improving CFers on the Rise

CelebrateIt’s been three months already, so it’s time to make my trek back to Tampa General to see if I’m still improving with age. My numbers have gone up since going completely compliant in March, so that trend should continue unless I’ve just come down with something this week with Beautiful being sick. The goal this visit is to blow a 40% FEV1 and a 42 would make me ecstatic (it’s a “Hitchhiker’s Guide to the Galaxy” thing). She is coming with me on a very rare trip to clinic because she has to be at work at 8am and my clinic appointment is always at 7am. She just told them matter-of-factly that it is my clinic day and she is going with me. After work, she has an appointment with an ENT/Allergist to see what is ailing her.

I’ve seen a lot of clinic visits being posted and tweeted about with great results with my new-found friends with a couple of unfortunate hospitalizations and a bad case of c-diff. It almost seems like everyone is doing a better job taking care of themselves and the meds are working. Go figure!

It doesn’t come without sacrifice on one end or another, though. For us, it’s co-pays out the nose, making budgeting impossible. For others, it means being on disability (which means you darn well better be compliant if you’re just sitting at home, right, right?). For others, it’s just a hard life that I used to live with a split life of work, school, family, and treatments. I’ve only crossed off school from that list, but once you enter into the family part, it’s a whole new world.

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What CFers Do: Gross Normal People Out

Maybe Gross

Careful, she may be gross...

This was by request from Beautiful after watching a Twitter conversation I was having with another CFer about our ENT visits. This conversation happened to be going on with a seemingly “cute and regular” young woman as far as her sinus surgery pre-op photo with pigtails and a big grin showed the world.

Before you know it, we’re talking about boogers and other gross sinus/nasal stuff. Quite a shock from the cultural norm, but CF girls aren’t like other girls that way. Sure, they don’t like to talk about this sort of stuff (at least I don’t gather that from our more normal conversations that happen every day), but they aren’t bothered by it. I haven’t found a guy yet who didn’t like to talk about bodily functions, so I’ve got that spectrum of the global population covered.

Topics CFers bring up that gross out others:

  • mucus
  • snot
  • boogers
  • polyps
  • enemas
  • blood (especially hymoptysis)
  • injections
  • puking
  • surgery
  • puss
  • diarrhea
  • particular things that happen that are gross as they happen

I think this should stand as a generally good reason why 2 CFers should not marry, aside from the whole issue of getting each other sick constantly and not being able to rely on the other person to be somewhat healthy enough to care for them if things should turn for the worse at some point. Can you just imagine the conversations that would go on in that house? Not to mention a number of other gross things that our spouses have discovered after moving in and realizing what they go themselves into. 😉

Sometimes you just have to say, “trust me, you don’t want to know, so you’d better stop the questions before you get details you don’t want.”

Feedback Request on Meconium Ileus Scars

I put out a special request tonight for a topic about Fatboy or CF and got this one in from Jessica – a.k.a. @chronicuriosity:

“Fatboy…the Early Years” or more on why your illieus issues @ birth still cause issues (I’m a illeus baby, too – hot dog scar!)

I’ve promised to stop talking about my bellyaching for now, so here is another angle that I didn’t cover in my posts on my scar or any of my blockage posts. I’m turning this into a personal/community request for information and feedback.

Fatboy - Meconium Ileus ScarI’ve always noticed that my scar (shown again for your benefit) seems to be directly attached to the abdominal muscles beneath it. You can try to grab my scar and pull it outward, but there is nothing to grab onto because it’s so tightly pressed to my muscles, which were totally raped by the surgeon. I have a 3 1/2 pack, even though you could roll a car over me with my strong abdominal wall. This photo was taken before I got a nice layer of fat from my additional 15lbs of weight, but all you can still grab is fat.

It has been cosmetically bothering me because my added weight gain has created a crease running across my gut that is visible to all because my shirts are all tight now. I look like a fat slob with two beer guts instead of one. I know it’s petty, but it is also uncomfortable because I know my stomach and intestines could expand more if they weren’t being held back by the scar.

Do any of you have an attached meconium ileus scar or do you have “freedom” between your scar and underlying tissue? If you have “freedom,” do you agree with my issue or do you wish you had my problem because your stomach just keeps getting bigger and having the scar keep things in check would be nice? Let’s get the CFers chiming in here, since only 10% of us are born with meconium ileus.