Tag Archives: cystic fibrosis

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.

“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.

Not so deep thought of the day – The X Factor in fighting CF

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The CF Foundation states that the median age for CF is over 37. They and thousands of volunteers and doctors and CFers and CF families have worked very hard to raise that number.  Every one of these individuals deserves major kudos, including anyone who has contributed financially to fighting CF.

Now here’s my “not so deep thought of the day”: What would the median age be without the Internet?

Would it still be over 37 years?

Think about how complex this disease is and how opinions vary on treating it. Think about how important sharing information is in fighting CF. Think about how comforting it is to communicate with others who have this isolating disease.

Without the Internet would we know the best order of nebs? The best CF Centers? The best alternative therapies?

Here’s my question of the day: Have we realized the full potential of the Internet in fighting CF?

I don’t think we have.

I believe the Internet will help us fight this disease in new and creative ways we haven’t yet imagined, or yet implemented.  And I wonder what they will be. I wonder. I truly do.

Fantastic Mr. Fox didn’t have CF, but if he did . . .

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My family and I watched Fantastic Mr. Fox Thursday night.  Great movie.  My daughter and I loved it. My wife fell asleep and would have loved it had she stayed awake (living with me is a tiring experience no doubt).

The movie, or more specifically Mr. Fox, reminded me of what it takes to fight CF successfully – you have to be a fox. You have to be crafty and quick on your feet. You have to have animal instincts that constantly monitor changes in your environment (or your health). If you stop being vigilant, you’re liable to get shot by an angry farmer, or stomped by cystic fibrosis.

Also, always have an escape plan.  Mr. Fox escaped some tight situations.  Each time I get out of the hospital, I feel like I escaped the buckshot to live another day.  And I savor life, sweat the little stuff less, and appreciate my wife and daughter even more after these close calls.

Based on the CF blogs I read, there are a lot of foxes out there fighting CF, using any edge they can get to outfox the disease.  It’s not just CFers who have this skill.  Parents of CFers outwit the disease, too, using clever tricks to keep their children healthy. And, like Mr. Fox, these fellow Vulpes vulpes are doing it with style and class.

Long live the fox.

The fear of hemoptysis

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I can’t say that I’d choose hemoptysis over the fear of it – coughing up blood rocks my world and I hate it.  The fear of hemoptysis, however, is starting to impact my life.  The last two times I sprung a leak were related to walking up a hill and stairs.  In fact, the latter happened walking to clinic, which allowed me to pass “GO” and move directly to “x-ray” on the CF Clinic Monopoly board.

Both recent episodes have come as a surprise, as always, but during events that in the past didn’t cause bleeding.

Now I adjust my activities due to a fear of bleeding.  I haven’t done cardio for months; I avoid stairs or walk up them slowly. Disneyland last week caused me great fits of stress when I walked up hills (not as flat I remember when I didn’t worry about drenching Mickey with blood, which would ruin a few photos but end up a hit on Youtube.com).  The thought of bleeding in the Magic Kingdom and disrupting my family trip was a heavy weight to carry around.

I know I’m lucky and have no reason to complain, but isn’t it human to always want more? Or at least to want to be normal and not worry about coughing up blood  in public places?

Genie in a Bottle? No, Broccoli in a Bottle

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Thanks to a twitter friend who told me about vegetable tablets, I discovered my dream supplement – broccoli in a bottle.

Found these little goodies at a health food store today and started taking them with real broccoli tonight.

Soon, I will fill large vats with broccoli and stamp them like grapes into a green paste, which I shall rub all over my body.  Then the Isothiocyanates will overwhelm my cf and I’ll be cured.  Nice.

“Say hello to my little friends – broccoli and coleslaw”

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If you read my earlier post on broccoli, then you know I’ve been shoveling in tons of the stuff.  I also added cole slaw for the cabbage and occasionally cauliflower.  Soon, I will find broccoli sprouts and start eating those, too.

All in the name of searching out sharktank.org’s mysterious Isothiocyanates.  That’s why I’m eating cruciferous vegetables.

I won’t repeat my earlier post.  But here’s the latest. After 40 plus years of taking enzymes, first the powdered form with applesauce when I was a child and now capsules, I can’t find the correct dosage. I’m constipated a lot and my digestion and the results of it have been smaller and perfect.

Last week on a business trip, I forgot to refill my enzymes for dinner and had only three for a large meal.  I thought I would pay the price, but all was fine.

I don’t get it and don’t know if it has anything to do with the Isothiocyanates.  I’m not used to this level of good digestion over such a long period of time.

I’ll be calling my CF Center this week to discuss enzyme dosages.  It’s been a long time since I had that conversation.