What CFers Do

We Don’t Understand Deep Dislike of Doctor Visits

January 26, 2012

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

CFers (as a whole) have to overcome a lot of the rest of the world’s fear or dislike of visits to the doctor while every kid would rather be playing outside than going to the doctor. We go every quarter, or even more often, so we have to be used to it and just see it as a part of life. Those who have CF centers who put them on IVs at the first sign of PFT drops have to get used to the hospital. It’s called “life” for us. Heck, I get excited to see the doctor when it is not a CF-related issue.

Then there is the rest of the world. We’ve got the stereotypical man who won’t see a doctor until the bump on his neck is the size of a softball, he is in advanced stages of prostate cancer, or any other number of ailments that can be fixed easily if attended to early on. My dad is somewhat like that, but I think life with me has rubbed off on him a bit so he doesn’t take it to the stereotypical extreme.

Then there is Beautiful. I thought it best for everyone’s sake to get her approval for this, since this is almost as much about her as it is about me now (all clear – good!). She loathes going to any doctor. They make you take your clothes off. They look at every freckle like it’s cancer. They put instruments in uncomfortable places. UGH! Did I capture your disdain accurately, Honey? She says, “almost… continue.”

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You Puked How Far?

November 23, 2011

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

DO NOT read any further unless you want to read about the funniest, most amazing account of the above subject you’ve ever read or are likely to read in the future. Okay, maybe I’m just the only person crazy and confident enough to write about it.

Yesterday was another typical day in Emergency Room Hell that is called TGH. I may or may not write about it later, though I’ll likely do an educational piece about my 10th or so visit as an adult CFer with a bowel obstruction. As some of us are familiar with our surgeries at birth that involve a high blockage, throwing up is often a part of the event. One time I was in a rush and forgot to take my meds while eating a 12″ baked sub with melted cheese on it. It wasn’t the last time I saw that sub.

Well, I managed to have an all-new experience yesterday at the ripe old age of 32.94 years. After my last 3 blockages, I’ve been quite tender after my treatment for several days. It’s actually alarming the next day how sore and distended I am, but I know my body well enough to know I’m clear and it’s all a part of getting older with cystic fibrosis. Last night was no different. I was still very tender as I left the ER, but I proceeded to the car as Beautiful pulled up to the ER drop-off and pick-up after going to the garage for me.

We had barely left the hospital as I felt a couple of waves of nausea. I’d been feeling the worst heartburn of my life all day and assumed it was because I’d missed 2 doses of my Prilosec. When I’d cough, the burning got worse and I almost lost it a couple of times laying in my tiny bed. It got worse and worse all day until it hit its max at Kennedy and Ashley. Down went the window, probably for dual purpose. If the light hadn’t been red at the time, I wouldn’t have had time to recover and it would have been “game over.”

A little info about Beautiful… she hasn’t puked since she was a wee one. When she gets sick, she sits as still as possible until she feels okay enough to move. When I start to feel sick, she has done everything from run away to get a bucket and run away to run upstairs and call her mom to put her on alert that she might need to come over. I have only lost it once since we’ve been married and never in our house. It’s an old apartment memory about 4 years ago. I’m doing pretty good, eh?

So, back to the drive. I was constantly falling asleep all the way home because I still had an hour-old dose of morphine in my system. She stopped in the driveway to let me out rather than clamber around the front of the car beside the chest freezer while I was so disoriented.

How sweet.

How fortunate.

I stopped by the freezer for a second to regain myself after another wave of nausea hit. I took another step in front of the door and paused again. Beautiful saw that and waited until I was inside before pulling in.

Inside and with the door closed, I stood there for a solid 5 seconds before it hit again. HARD! This was it. You know, that time you have to decide immediately what to do.

Front door? No, mess on the sidewalk after dark is no fun.

Upstairs bathroom? I won’t make it.

Downstairs bathroom? I won’t make it now – I wasted too many milliseconds and the target is too small.

Kitchen sink? There are clean dishes on the left side, but I think I can ma

I took one step toward the sink and felt it start. I got a second step and saw a pink/orange fountain erupt in front of my face, gently arcing upward. I made it to the sink at the same time as the projectile. With the exception of the washcloth hanging from the faucet, the one little bit on the breakfast bar edging, and the small splatter on the baking sheet on the left side of the sink, it ALL made it in the empty side of the sink!

There, I discovered the source of my heartburn: the pulp of the orange slices I’d had at small group the night before, a small shred of cheddar cheese, and a bit of ground beef from the chili right before the oranges. Apparently I was already in deep trouble before dinner, meaning dinner was a really bad idea.

Then the horror hit me. Beautiful was going to come inside to this mess. Quick! Clean it up! Nope, I wasn’t done. She took at least 30 seconds to come in and I was still standing there over my filth, completely aware of how acidic it smelled. She walked in, asked if I was okay, and said, “I’m going upstairs to take a shower. When I’m done, I’ll have fresh clothes for you to put on after your shower.” 😉

I got out of the shower and all of the dishes and the counter top had been cleaned and Windex’d. She told me this morning that she’d sprayed the whole downstairs and stairwell with Lysol and was afraid the smell was going to make me cough. It didn’t.

All in all, I got 98% of my puke in a 12″x12″ sink from at least 8′ away. That has to be some sort of world record. It’s at least a personal record.

CFers Have Odd Smells

June 27, 2011

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

This 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.

Open Talk: Most Embarrassing Coughing Fits

May 22, 2011

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

Today was the coughing fit of all fits: publicly. I didn’t even have the “luxury” of having this grand mal fit at someone else’s house. It happened at church, thankfully after the service and while waiting for a meeting to start. Here’s what happened.

My best friend’s dad came over with his camera for us to take to California with us, so I was sitting there opening the case with Beautiful to my left, my mom-in-law in front facing us, and my bro-in-law and his girlfriend on my right. There was a note on the camera that said he’d switched the camera out of shooting in RAW format, so I was going into the menu to do that immediately. I didn’t remember it until later, but Mom2 was telling me about the photos on the server for me to look at and we were in the middle of a conversation about photos for the new website.

Then I had one of my coughs that sends the world black, my tongue numb, and everything goes away. Everything.

It came on without warning, no pre-coughing or anything. Blackness.

The next thing I knew, Jose, one of the elders and a family practice doctor, was over my right shoulder, Beautiful was back on my left, and Mom2 was having a clear freak-out along with her about what just happened. What did just happen? “You dropped the camera on the lens,” they said. “You weren’t answering us and you were shaking like you were having a seizure.”

“Okay, answer me this, what is her name?” Jose asked me pointing at Mom2 after I insisted that I was alright, though I freely admitted to flat-out blacking out. “Mary-Lynn,” I replied. “OK, he isn’t disoriented, which is one of the main symptoms after a seizure. Can you walk to the kitchen with me so I can test your gait? A lot of people behind you are concerned for you and I just want to be sure you are really okay.”

I have rarely ever been that embarrassed in my life. Certainly never at my home church where I’ve been since I was 16 and most people know I have CF. At that point, I still didn’t know what had happened other than blacking out and dropping the camera. “It’s not like I fell,” was all I was thinking until we started for the kitchen and then I started thinking, “what did they see? Why is that person smiling at me now?”

I’ve never felt so at the mercy of my damaged body before in my life. I had lost complete control of everything, making me extremely glad I didn’t have to go to the bathroom at the time.

In the kitchen, he took my pulse and blood pressure. Both were elevated, but within reason for such a coughing spasm. He would have been concerned if I had lower blood pressure. His O2 meter hadn’t come to life because it was too hot from being in the car, but since I was carrying on conversation fine, he let it be.

What really happened

So on the way home, Beautiful told me what I did. We were talking and I started coughing, but really badly. She was shaking my shoulder asking me if I was okay, but I didn’t respond. She shook harder and yelled louder. Still no response. That’s when the freak-outs began because people look to her to know if things are OK. Things were not OK. She got up to go get Jose, and the others rushed with her. They were only gone 10 seconds, but I’d gone into a slouch back with my head looking up and my tongue out and my arms down at my sides in stiff-fashion, still coughing hard and my whole body was shaking.

Then it was over.

I hope that never happens again. Ever.

Has anything like that ever happened to you?

We Don’t Understand Deep Dislike of Doctor Visits

You Puked How Far?

CFers Have Odd Smells

Open Talk: Most Embarrassing Coughing Fits

What really happened

Time Elapsed Since IVs