Category Archives: cystic fibrosis

10 things I don’t want to hear from my PICC line nurse

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I’m going through man-a-pause. No, that’s not on the list, but it should be.

It was all I could do today to keep from using ALL CAPS in my tweets. The number of tweets I didn’t send was higher than the number I sent. I told CF-mum Lorraine I dug her. I started three blog posts and stopped. Strange day.

I also listened to Captain and Tennille’s Love Will Keep Us Together and enjoyed it.

So, when in doubt, go with frivolity and horseplay.

10 things I don’t want to hear from my PICC line Nurse:

  1. Where did those buff arms go?
  2. Hellooooooooooooo, to my first solo insertion.
  3. Neck or groin? Tongue depressor or leather strap?
  4. Nursing school in Tahiti rocked, dude!
  5. Rambo never asked for a shot of lidocaine, dear. And he had to stitch his own arm.
  6. Does Red Bull ever make your hands shake like this?
  7. Do I feel warm to you?
  8. Mind if my lover, Bart, watches?
  9. It’s okay, 5-second rule in effect for dropped needles.
  10. Cystic fi-what? That can’t be good.
  11. (bonus) Holy crap! It is sticking out of your ear and I just . . . threw up in my mask.

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Monday Musings: Malcolm Gladwell, rapid cognition and CF

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In his book Blink, Malcolm Gladwell explains the importance of thin slicing or rapid cognition in decision making. He states that these terms are not “gut instinct,” but rather an educated decision made quickly based on the conscious and unconscious minds. And, rapid cognition is usually more trustworthy when making decisions than an analyzed decision made over time.

What’s interesting is how Blink applies to battling cystic fibrosis.

One of my favorite books by one of my favorite authors.

What facts do we really have to go on with CF? We have our interpretation of the facts and others’ interpretation. Apologies to Mr. Gladwell, who can call it what he wants, but we need our CF “gut instinct” to help us make decisions.

Example: On cysticfibrosis.com last night, a mother of a CF child asked about the order of meds her clinic was recommending. I replied with my order and logic. A man replied with the opposite order. Who am I to tell him that pulmozyme before HTS doesn’t work as well as HTS before pulmozyme? He says it works best that way for him. Who is correct?

Or, jokingly, who is more correct?

We are given some tools (meds) by doctors with some guidance, and we choose some of our own, such as supplements. Many times, it’s up to us to determine which tools to apply and how to apply them based on our research, our experience and our gut.

The mother was questioning the clinic’s decision because her experience, or gut instinct, told her their decision was incorrect and less effective.

Now guess which group of professionals “thin slices” daily. They’re highlighted in the book – doctors.

Doctors need to make fast decisions. They interpret the evidence and what it tells them, then go with it, rarely second guessing. Bang. That’s it, patient diagnosed. Move on.

Have you ever experienced the moment with your CF doctor when you’re trying to decide whether you need to be admitted or not?  The decision is borderline, hovering, waiting to be made. Some signs point one way, some the other.

What tips the scale one direction or the other?

You sit there thinking, processing, clock ticking, looking at your doctor. Who blinks first? Your gut, or your doctor’s?

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Fox pays me a visit

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The Trickster

Last night, Fox came to visit.

Fox: Why are you sleeping?

Me: I’m not.

Fox: Your PFTs went down.

Me: I know. I was there.

Fox: What are you going to do about it?

Me: Cry like a baby.

Fox: This could be the beginning of a bad trend.

Me: Crying or falling? What can I do?

Fox: You’ve fallen before. Get back on the bike, literally.

Me: I’ll bleed.

Fox: There’s always a trade off.

Fox left.

I sat in the dark, thickheaded, and pondered what the annoying trickster had said.

Do I have any tricks left of my own?

The clock is ticking.

– – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – – –

Post Battle Blues – Please add to the list

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Post not sponsored by Old Milwaukee (though it should be based on my consumption of their product the last three days)

[CF Fatboy’s guest post is in the comment section. Watch out, it burns.]

Feeling tired today from the battle with @cysticgal. It could just be the cipro, day 7, or the Old Milwaukee, bottle 7.

I wish we had added number 11 to the blog throwdown:

11) Describe the perfect hospital stay.

My first answer would be: Not going at all. But considering I’ve been going every four months, here’s my answer for today.

I want everyone to line up in the hallway when I arrive, Nurses, Doctors, techs, RTs. Stand in the hall and greet His Highness, please.

My antibiotics need to be ready to go the minute I arrive, no waiting four hours for the first dose.

The PICC line nurse needs to be waiting in my room and gowned up. No more temporary peripheral IV sites. I’m tired of the 24-hour IV site in the fatty part of my forearm that takes every o.z. of my inner reserve not to cry out like Mel Gibson at the end of Braveheart: FREEDOM . . . . . S**T, THAT HURTS.

I want a workstation. No more putting the laptop on the bed and pulling the chair up to it. Think Marriott.

I want a massage every day. You truly want me to feel better? Massage is the Disney Fastpass to good health and Heaven, my friend. Heaven. I’ll cough up mucus from 1969 if you do this for me.

No RTs. That’s right. Unless I can’t move my arms, give me all of the meds I need and come back in 14 days. I can do it myself, LIKE I DO EVERYDAY OF MY LIFE. Most of the RTs I know should be wearing brown UPS outfits because their only job is to deliver stuff.

So, what do you think?  What did I miss? Feel free to add some of your own in the comments section. It’s interactive today cause I’m feeling lazy and I have have to go wash the Bird (that’s guy code for Tran-Am).  🙂


CF BLOG THROWDOWN: Dude Versus the Lady

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Are you ready for the CF Rumble in the Jungle?

In the pink corner, we have CysticGal, sensitive and kind, who adores pictures of bunnies and anything  pink.  She is loving, caring and the perfect model of CF womanhood – A poet of the highest order. And, fan of fuzzy animals and all things “chic.”

In the blue corner: me. I don’t take showers in the hospital; I smell of man musk most days. Raw, nasty and gross and 110 percent CF man. Defective chromosome and mucus-filled lungs ready to roll in my “Smokey and the Bandit” black Trans-Am.

Bring it on, CysticGal. Respect for showing up.

1. What is your favorite thing to spit your sputum in?

CysticGal: I’d prefer you call it “yucky.” I spit the yucky in a pretty blue cup.

UnknownCystic: An Old Milwaukee beer can so I can shoot it off a fence post later.

2. Things you’d like to say to your Nimrod RT:

UnknownCystic: Is that my inert pulmozyme in your body-temperature-heated pants pocket? Or, are you just happy to see me?

CysticGal: If you hit my boob again, we’re done.

3. What do you think about when you’re at the gym:

CysticGal: That’s right, I’m naturally thin and walk this slow on the treadmill. Suck it. And stop staring at me.

UnknownCystic: I don’t like cardio or being a thin guy. No matter how many weights I lift, I won’t look muscular. Where’s the radioactive spider that turns me into Spiderman?

4.What excuse do you give to avoid taking the stairs?

UnknownCystic: Sorry, my knee is acting up again. Old bear-hunting injury. But we ate like kings that night. We ate like kings!

CysticGal: These heels are killing me! I’ll meet you up there. (Said while wandering off toward the elevator.)

5. What is your biggest worry about your body?

CysticGal: That others will be jealous of my supermodel thin bod. Poor ladies!

UnknownCystic: I worry about the inside of my body. Don’t want to be coughing up blood when I’m hanging with supermodels, do I? BTW, the bag over my head helps in those situations.

6.  What is your most attractive CF-related quality?

CysticGal: My raspy voice gives me that Demi-Moore-esque quality… or is it that I’m sleeping with Ashton Kusher?

UnknownCystic: I have no attractive qualities, hence the bag over my head. CysticGal, digging your choice of Demi. I’ll call you late one night for a . . . talk. You can call me . . . Ash, baby, Ash.

7. What would you change about your CF Clinic?

CysticGal: I’m not saying that it’s okay to use prescription drugs for the wrong reasons, but I am saying I’d like to be high the whole time. I think its best for all involved.

UnknownCystic: My clinic experience will be similar to eating at Hooters. I want hot wings and ESPN in every exam room. The nurses, well, you get the idea. And can you tell the “high” woman in room 7 to pipe down, please.

8. What line of poetry best describes living with CF?

CysticGal: “A good day ain’t got no rain, and a bad day is when I lie in the bed and I think of the things I might have been.” I don’t expect UC below to understand that. So I’ll offer him this: “Genetics: It’ll screw you every time.” That is not poetry but just a phrase I like to incorporate into all of my explanations of CF.

UnknownCystic: I don’t understand either one. Hey, this is a chick question. I read “Hunting Dog Monthly.” But here’s one from my hardhat to impress. And it’s from a woman, Sylvia Plath. “Her blacks crackle and drag.” I think that’s what she wrote, but I’m a dude and too lazy to look it up.

9. Who would you be if you didn’t have CF?

CysticGal: Clearly, Angelina Jolie. Without all the adulterous and bizarro family stuff. Just the kids and the famous actress and Brad-Pitt-as-husband parts. Oh yeah, and she’s dead sexy- like me. I’m sure if you asked Angelina Jolie who she would be if she had CF, she’d say, “Cystic Gal.”

UnknownCystic: That’s funny, CysticGal, because I’d be Brad Pitt. Actually, I don’t like Angelina’s tattoos. I’d be Brad Pitt but with my wonderful wife and daughter. Sorry, love is love and hard to find.

CysticGal: Awwww, that’s sweet. And lame! Just kidding.

10. What career would you have if you didn’t have CF?

CysticGal: If CF exists, I would be a child-life specialist at a hospital. I think that job is the best but can’t really do it because of all the infection control issues. If CF doesn’t exist, I would be . . . ME, but with lungs that worked.  I think I’ve done a pretty good job along with having CF. And maybe I’d be fat, which I wouldn’t like, but, you know. Win some, lose some.

UnknownCystic: If CF exists, a scientist to help cure it. If CF doesn’t exist, a Chippendale’s dancer to help cure something else. Does anyone have change for a dollar?

(Thanks to everyone for reading and to CysticGal for her wisdom, charm and grace. I can a learn a lot from her, I think. I’ll ponder that question right after I finish playing Wii all night, eat a California roll or two, and drink a six pack of Old Milwaukee. What was the question again?)

PFTs, Body Blows and Advice from the Fox

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Sometimes a CF punch doesn’t knock me down.  Sometimes its a good punch to the body and takes my breath away,  but I regroup.

That’s why I hate PFTs.

Today, at my post hemoptysis appointment, I took a punch. Not a terrible punch, but I felt it.  PFTs were down a bit but not terrible. Not enough to warrant a jail sentence.

The psychology is tough though: Can I regain the lost lung function?

What would the fox do?  I ask.  “Benzyl Isothiocyanates,” says the fox.

Oh, well. I’m still in the fight. That’s the good news. Not sure what I’m going to do about the hemoptysis in the long run. Got the “1% chance embolization can cut off blood supply to your spinal cord” speech.

Wet my pants and went home. Ate my broccoli and slaw and strategized my next punch.

Monday Musings – Looking back in the future

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Someone once thought it was a good idea to hire me as a junior high English/literature teacher. LOL. I still can’t believe it but I thank them for their trust.

The good news is that I don’t think I harmed any young minds. I thought I was great teacher.  Now, in hindsight, I’d say I was good at best with potential. Not great.

I enjoyed teaching, but gave it up because of the parents and pay. The kids were great and getting paid to discuss language was pretty cool. However, dealing with some parents reminded me too much of my “eating sh** days” in retail sales. Add that to the small paycheck and I gave it up.

During my days teaching I made exactly one comment I thought was interesting – one that is also relevant to cystic fibrosis.

Here it is: What is happening in the present day that we will regret in the future? Past examples: slavery, the red scare and the internment of Japanese. How did these happen?

And that’s my question today: When we look back years from now, and hopefully we’ll all be alive to do just that, what will we regret about cystic fibrosis in the future? The fact we lost so many before the cure was found comes immediately to mind.

Other thoughts: Why didn’t scientists know sooner that cruciferous vegetables held those secrets? Why did we bother taking a certain medicine?

Or will be there be no regrets in the future?

That’s what I’m thinking about tonight. What do you think?

The blood volcano blows

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My daughter had a track meet today, which is 7 hours of sitting for us to see less than three minutes of competing by her. I don’t want to know what the ratio of sitting to action is.  Regardless, it was worth it. She did well. We were very proud.

While the other parents sat and waited for their children to compete, I wondered how many of them were sitting there wondering if their lung was going to spit blood without warning. Everyone who was, please raise your hand (my hand is raised).

After the special gift CF delivered last night when I coughed up blood in our friends’ bathroom sink – a joy cleaning up the splatter – I wondered when the volcano would go off again.

In order not to wake the angry giant, I walked up the hill to the track meet very slowly.  Then, when walking up stairs, I pretended to look at my video camera. This way no one wondered why it took me five minutes to walk up 20 stairs. One pause. Two pause. Three pause and look intently at the camera. Step.

Nothing like sitting there for hours swallowing bloody mucus.  Oh, well, it can always be worse; I just wish it was better and I didn’t have to think about things like this. I’d much rather be showing my daughter how to get a good start out of the blocks or fly in the long jump. Ah, CF, the gift that keeps on giving.

Today, sitting there in the hot sun, I thought about a quote from one of my favorite movies, “The Hustler,” with Paul Newman and George C. Scott. In one scene, Scott  says to Newman’s character, Fast Eddie, (I’m paraphrasing here) “World’s greatest indoor sport, kid, feeling sorry for yourself.”

I discovered today that it’s a sport you can play outdoors, too.

Solitary Confinement, the 60s and Bob Flanagan

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I read an article about the damage solitary confinement does to prisoners. One might say that’s not a bad thing, a little payback for their horrific crimes. I won’t debate that here. What was interesting and relevant to CF was how much humans need the company of other humans. Without it we literally go mad, as evidenced by solitary confinement research.

That’s the closest I can get to describing growing up with CF in the sixties and seventies. I wasn’t isolated from other people, just other people like myself, which is one of many cruel ironies about this disease. Mask up and stay a certain distance away from each other, symbolizing separation even when together.

Thanks to the Internet a younger generation of CF kids can grow up knowing there are others out there like them. And, more importantly, some of us grow old with CF. I felt like a zoo animal at times growing up, different and apart, which was occasionally reinforced by the neighborhood kids through statements such “you’re going to die” or the rocks they threw. Being skinny didn’t help the situation.  (Sorry, crying like a baby here.)

And then there was Bob Flanagan, CFer, performance artist.

I speak of him for three reasons: to keep his warrior memory alive; I respect him; and because I wonder what his life would have been like had he grown up in the age of the Internet. Did he feel the same isolation?

I was lucky to see Bob perform one night in Venice CA at Beyond Baroque in a room painted all black, which was quite disconcerting in itself. Bob’s dark performance fit perfectly in the suffocating space and created a sense of disorientation.

He and I had a mutual acquaintance in a local college professor, a great writer who I still owe an apology to for monopolizing his office hours with my crying about my life with CF. (Sorry, JK.)  He told me about Bob’s show and I took my future wife to see him. (I’m surprised she married me after that night in Venice.)

I won’t go into detail about Bob’s performance because there is plenty of web content about him, including a documentary. And I offer this warning: Most of Bob’s performances are beyond Adult Content. In fact, some of his material might be the type of thing that you wished you’d never seen.  So, you may want to read about Bob. Proceed with caution before entering his tortured world.

How would the Internet have reshaped his life and mine? People are more knowledgeable about CF and understanding these days than they were when I grew up, and Bob 10 years ahead of me. Most realize we have more to catch from them than they from us.

Even today, with my friends, Twitter friends, and family, I still feel a sense of isolation.  Is it from my youth, or is it that I learned very young not to talk about CF, to hide it from people, and rarely discuss it?

My thoughts on this now: We all have challenges in life. Are mine really that different? I don’t know. Maybe.

I do know this: Solitary confinement won’t be punishment enough for cystic fibrosis and its crimes; Judgment Day is coming.

“The Matrix” and Pulmonary Function Test (PFT) results

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I love “The Martix.”  The first film, not the sequels.  I remember looking over at my wife when the movie ended and we didn’t say a word; but our eyes said it all.  Holy s**t!

Yesterday, a CF blogger I just met online posted her PFT results from 1982 to 2006.  And I had a Matrix moment.

At the end of “The Matrix,” Neo’s sees the world in green code (picture to the right).  When I looked at the PFTs, I saw more than just numbers – I saw the code behind her life with CF.

I saw the story of a warrior – a mother – who has drawn a line in the sand she won’t let CF cross.  A woman battling over the decades to maintain her lung function, fighting for every percentage point and a life with her son.

There were 92 entries on the list and it’s not complete. Over 92 times she sat with a PFT tech or nurse and blew into a mouthpiece until her face turned red and her lungs were drained of air.

And, if you know PFTs, you know that you usually don’t blow once.  You blow three times on average, depending on your clinic and how long ago it was. (How many computer candles have you blown out in your lifetime?)

I had never thought of PFTs in this way before – that they tell our CF stories in code.  They reveal the low points in our lives when we wondered what we had done to lose so much lung function. (How did it happen? What did I do wrong?) They showcase our victories when new drugs were introduced or we exercised more or we found a supplement or treatment that helped us outfox the disease.

I wish I had a complete running record of my PFTs.  I know what they would show and it’s painful. It would show that I was hotheaded and made more mistakes than I did correct decisions.  That code would rip open old wounds.

I find it more comforting and motivating to look at others’ code and root them on.

What will our PFTs look like when a cure is found?  Like Neo at movie’s end, that will be our victory for years of hard fought battle. The code will no longer matter and we can go on with our lives.

Roll credits.