Tag Archives: CF Foundation

Three wishes

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[No medical advice is given in this post or any other post on this site. Please see disclaimer in left column.]

Last night I fantasized that I had three wishes for cystic fibrosis.

I wished for a cure for all CFer’s, our lung function and digestive issues restored to normal, and lost warriors returned to life. These wishes came to mind in a heartbeat. But as my mind soaked in the warm bliss of fantasizing that all of these could come true one day, I changed my mental game to think up more immediate and practical wishes. (There will be a cure one day.)

If only it were as easy as rubbing a bottle

So with my brain-game rules changed, I wished for the following:

1)  BITC gets tested, launched, and becomes the most effective CF treatment ever. What would be more fitting than Melanie Childers and Sharktank.org delivering the grassroots knockout punch to CF? Karmic justice at its finest. My fear here is that BITC with its great potential will take mainstream science and medical companies too long to get moving. Hello, CF Foundation or rich donors? Time to step up with some research cash and get BITC  fast-tracked, as you don’t want to say “would have, could have, should have” years from now on this potential game changer.

2) All CF clinics deliver a high-standard of care. Years ago, my clinic had really lax standards – they used a peak flow meter to test lung function. As a result, my numbers went down and I lost some of my lung function forever. In came a new, excellent team with mandatory quarterly visits, PFT testing at clinic, and I.V.s when PFTs drop 10 percent or more. I’ve read others’ blogs and discovered that some clinics sound like my old clinic and are not being aggressive in treating CF. Thank you to the CF Foundation for setting higher standards for CF Centers. My wish is for them to push harder and ensure all CFer’s get the same high level of care. Oh, yeah, how about getting trial drugs out sooner? Please.

3) Every state automatically enrolls its residents in the organ donation program. Individuals should have to opt out of the organ donor plan, not in. This would help a lot of CFer’s and others waiting for organ donations. It seems like such an obvious change and I read that some states may move in this direction. Yay. Move faster, please, as a country.

X) This one is complete fantasy. I wish CF had a physical presence and I could hunt it down and kill it. But I wouldn’t kill it right away. I would torture it. And I would have no guilt about doing so. Imagine the worst, most painful torture scenes you’ve ever seen. I would do that and more to CF and it would feel so good to make it pay for the suffering it has caused to CF’ers and their families and friends.

Those were my immediate wishes. Now all I have to do is find a genie bottle, rub it, and make my wishes. Don’t be surprised when you wake up one day in perfect health and you hear screams coming from the other room. It’s just me with an ice pick engraving names into CF’s flabby skin.

Stay well.

Day 1 in Jail and Fox Looks at the Sun

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I’m in jail.

I had a choice: Spend a few days driving back and forth for outpatient tests or go to jail and get them done there.  I turned myself in. And what a fun first day it’s been.

The day started with a tease. They brought me to a room in the new hospital wing. Excited, I was. Alas, reality crushed that dream hard and fast when they realized I needed telemetry.

“Don’t unpack,” the nurse said.

There was a silver lining. The nurse usually worked on the intensive care floor, so when she asked if I wanted her to start an IV before I transferred, I almost got down on my knees and kissed her feet.  Yes, please.  Start away, O wonderful IV Goddess. Stick me, stick me good.

She aced the IV insertion, of course, like nurses from that floor do. No tapping veins or doing rain dances to summon a vein or calling another nurse to do it after you’ve screwed the pooch three times. Bingo, bango, bongo, she was in and blood was coloring the towel placed on my knee bright red. Afterwards, I almost wanted to see if she could do it blindfolded. I bet she could have.

As this nurse doesn’t deal with CF patients, she cracked me up when she told me meds from home would have to return home. Yeah, sure thing, babe. I’ll get right on that.  Where’s my carrier pigeon? I hope it can carry a large bottle of enzymes, two packs of the xopenex dosage they don’t stock here, and the myriad of other meds I brought. Welcome to CF World, Ms Nurse; it’s different from any other world you’ve ever been to. We have our own rule book and it’s 9,023 pages long. Rule #5,879: Always bring back-up meds.

I got to the “heart” floor and was joined to a heart monitor.  Now they can watch every beat and “misbeat” while I’m in my room working.  How exciting that job must be. One lead was off for an hour and no one broke down my door to see if I was still alive, so someone’s not paying close attention. At some point, I’m going to switch all the leads just to see if they notice. That’s on tomorrow’s agenda.

The RT came along with her high dose of Xopenex that makes my heart race. I was prepared for her. I had my low dose in my pocket ready for the switch. I excused myself to wash my hands, placed her dose in my pocket and then pulled out the low dose. That’s how the magic works, my friends. No conflict or arguments about it with the RT or doc, just smiles and fun. Suckers.  You didn’t even know there was a magic show going on, did you, people? 

The guy in the room next to mine must still ride a horse and buggy to work and write with a quill and ink. He kept yelling “Nurse, Nurse, Nurse.” I’m thinking, did they not show you the big red button on the remote for calling the nurse?  The same remote that you’re using to change the channels of the blaring TV in your room? He must of screamed it a dozen times. This is why some people get a pillow placed over their face Godfather-style in the middle of the night. Holy cow.  Somebody tell that guy what century he’s living in.

Many thanks to everyone for the kind thoughts and messages. They make a difference. When I wrote that CF drove me crazy, I wasn’t making it up was I?  You won’t see the CF Foundation posting any videos of me on their web site. No, I’m the poster child of what you don’t want to do when you have CF. Someone has to set the bar low. Happy to do the job.

Stay well.

The real truth from Fox.

There’s one part of the adventure Unknown left out. When they brought him to the Heart wing, his heart almost fell out of his pants. The most smoking hot of hot nurses got assigned to him. His worst fear. We’re talking stripper hot with long brown hair and green eyes. A nine out of ten, like looking at the sun.

Unknown’s a gentleman and averted his eyes. Not me. I’m a fox. I looked and my eyes burned. But it was worth the blindness.

I prompted Unknown to suggest they bring a pole into his room to see her moves, or just drop a couple dollar bills on the floor to see what might unfold. No luck. This Unknown is the wuss of all wusses. I’m stuck here because his little hearty heart did go pitter patter a little bit funny. No one hooked old Fox up to a monitor when this nurse walked in, but they should have. I’m still dazed by what I saw.

The other terrible part of this current adventure is that there is no beer to be found.  None, not a drop. A little AC/DC playing, some beer and tonight’s post would have had a much different tone. Unknown would have titled it “A letter to my wife: I’m so sorry for what I did in the hospital.” 

This is when I need to be hanging with Tiger, not Chicken Boy.

Someone send a six-pack, a boom box, and a stack of dollar bills. This party needs a jump start.

Fox out.

Fundraising, regrets, and Lewis Black

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[NOTE: This post discusses CF warriors no longer with us. You may want to skip this post or skip to “LEWIS BLACK” below if the subject makes you uncomfortable.]

I once served on a committee for a local CF event for six years, probably more. I forget the exact years, but it was an honor. The team of individuals I worked with, well, they were amazing people. One was a CF parent who lost his child back in the day when there were few treatment options. He and his wife continued to fight CF after their loss. Friends of this couple joined the event committee to support them.

I learned a lot about courage and strength of character on that team.

Another family that sponsored the event had a daughter in her teens fighting CF when I joined the committee. She graduated college during my tenure on the team. I never met her, for reasons we all know well – stay away from each other, just one more nasty twist of having CF.

Their daughter passed away in her early 20s. I felt terrible for the family, and a little odd because here I was, living proof of someone older surviving with CF. There was nothing I could say or do to make it any better for them. I tried many times to write a letter, but the words weren’t mine to give. I’ve always regretted not penning it. I just couldn’t.

The event ended soon after that and the family, showing great courage, kept fighting CF with another event. I tried to write them again to thank them for that. Again, I could not do it. I don’t know why.

LEWIS BLACK

Helping to fight CF

One highlight of our events was seeing Lewis Black perform live. He did a great job and brought humor to a serious subject. He is a giving individual and still involved in the battle to cure cystic fibrosis. I saw him recently in a CF Foundation video, which is excellent. Here’s the link.  http://www.cff.org/aboutCFFoundation/Publications/Videos/MyDream/

If you’ve never heard of Lewis, please check out his work at http://www.lewisblack.com/ or watch his videos on youtube. He’s in the middle of a tour that may come to a city near you soon.

Stay well.

Monday Musings – School, Dreams and a New CF Narrative

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I applaud@cffatboy’s recent college graduation. Three cheers for his hard work and dedication. No one will ever steal that accomplishment from him, except old age when he’s 101.

I watched many movies here

His journey reminded me of when I graduated college at age 32.

I had experienced a difficult time in high school because I lacked guidance, was foolish, and CF had taken its toll on me mentally. I didn’t think I’d need a degree.

Why put the effort forth when you are going to die? CF told me.

Partying and having fun sounded better, though I did those poorly, too.

One day, walking to a movie in Westwood Village – I spent my time in movies escaping – a story on the cover of USA Today jolted me hard. It stated that the CF gene had been discovered and a cure was possible.

Now had this been a movie, zoom to a close-up of my stunned face, sound effects like car brakes screeching and the camera panning around me quickly, 360-degree style, as my world spun out of control.

That simple newspaper story redirected the missile that was my life.

Can't thank USA Today enough

For the first time, I believed there was hope and that my thesis about CF killing me might be flawed. It was a revelation in an “oops, what have I been doing with my life” kind of way. I earned my college degree because of that life-changing moment and started believing in the future.

The role school plays in my narrative and the narrative of having cystic fibrosis is interesting to think about. My mother decided she would help me live to graduate high school. I became determined to graduate college. And my current goal is to live to see my daughter graduate high school.

Great work CFF!

I’m not foolish enough today to think my story is unique. How many of us now living with CF learned at a young age from a doctor that we wouldn’t be here today. That is the old narrative of cystic fibrosis for many now. Thousands of volunteers, parents, CFers, the CF Foundation, and the Internet came together to defy and change it, to elevate the average life span to 37 years.

So, my friends, my question today is: If a new CF narrative exists, what is it? And, drum roll, will it be as wrong as the one the doctors told years ago?

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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.

The New Army of CF Fighters Waiting in the Wings . . .

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There is a new army growing, destined to fight this disease – an army that proves we are winning the war against cf and who may help us win it.

The children of adults with CF.

I am lucky to have one, a daughter.  I wish I had two, but it just didn’t work out that way.  The one my wife and I have is perfectly imperfect.  Every day and moment watching her grow up is special.

What will be challenging to watch, however, is how cystic fibrosis affects her life.  We know her dad, me, has it.  Her mom is not a carrier (we checked before having her).  So, my daughter is a carrier.  She is physically touched by cf.

My daughter and the rest of the children who are growing up with CF parents have automatically been drafted into the battle.  And just as life reveals itself each day to her as she ages, so will cf in three ways:

1) My health and weeks in the hospital.  Not every kid spends weekends visiting their parent in the hospital, getting prompted constantly not to touch the floor with bare feet and to wash their hands constantly. Though, we do sneak to the roof of the hospital parking garage sometimes and scooter down in covert fashion, making the day special and unique.

2) How will she react as she gets older?  Will she want nothing to do with cf?  Will she join the battle and raise funds and blog about this terrible disease?  When she’s a rockstar traveling the country, will she paint “fight CF” on her guitar and hold benefit concerts?  Or, when she’s POTUS, will she direct more funds to cf research?

3) How will it affect her choice to have kids?  What if her mate is a carrier?  My hope is that by that time, cf has been cured.

Perhaps it will be this new army of kids with cf parents who joins the many cfers, hard working volunteers and CF Foundation to finally defeat cf – ending its terrible reign over children and young adults.

Wouldn’t that be beautiful? The ultimate middle finger to this disease.  Our children standing with others over the grave of cystic fibrosis.