Breathing Deeply: My Life With Cystic Fibrosis

Shortly after we got married, I asked Brad if we could set up an aquarium. I had been watching "Finding Nemo" quite a bit, mostly because I liked the screen saver on the DVD. It was like watching real fish swim around. The only thing missing was the soothing and steady gurgle of the filter.

We've said welcome and goodbye to a dozen or so fish in those 4 years. I still enjoy the aquarium with its sights and sounds. I like gazing at the colorful little denizens of the deep as they swim effortlessly around the sea grass and the doughnut rock. I think it's cute that they seem to be able to distinguish whose hand is dropping in their food flakes at the end of the day.

Merely the smell of the store brought back a flood of memories. Having grown up on a dairy, my recollections of my animal experiences during child hood included a lot of non-traditional stuff. I bottle fed a baby goat one summer. I gathered duck eggs on a number of occasions. Mom has a picture of me in my high-chair, grinning from ear to ear as my dad dangles a small snake a safe distance from my face. Those are just a few examples.

With the onset of asthma and allergies, interaction with most animals of the "pet" variety has been severely curttailed. Cats are out of the questions. A dog as well. I don't know enough about herpetology to properly care for a lizard, snake, or other reptile.

What I lack in know-how about particular species, I make up for in availability. Now that I'm home more time, I wanted to spend it getting to know a different sort of pet. I had been checking out the animals at the local (non-chain store) pet shop for the last few weeks. They have all sorts of critters--some very classy and others so scruffy they would aspire to ragamuffin status. The bunnies piqued my interest.

I looked on Petfinder.com to see if there were any adoptable bunnies. I found some, and scheduled a visit to the San Diego Humane Society and SPCA. We met "Thumper" a Netherlands dwarf rabbit. He's a little on the shy side, but that's okay. He behaves himself, and is doing well with his litter box. We've got a little bunny playground all set up, and he's liking that. Mostly he's just sniffing everything. He even came over to me to check me out, which was a huge breakthrough. The people at the humane society said that Thumper was not a big fan of being handled. They watched how Thumper and I interacted and said that he was better with me than anyone else they'd seen.

Let's face it, dads rarely get their moment in the spotlight when it comes to receiving gifts. Celebrate what he means to you and the family with a unique and unforgettable gift. Forget the DVDs, ties, and novelty gadgets from The Sharper Image. Get Dad something he really wants and will appreciate on Father's Day.

Read my suggestions for Father's Day Gifts.

Believe in life! Always human beings will live and progress to greater, broader, and fuller life.


--W. E. B. Du Bois







I'm still on home IVs, and will be for awhile it seems. I was up to 2.4L when I was discharged from the hospital on May 14. Since then my FEV1 has been less than stellar. It goes up and down almost daily. My peak flows are fairly decent, but other than that, I'm not producing any wonderful results. Today my best FEV1 was 1.99L. I'm not sure what's going on.

I'm on SO MANY medications right now, that it's hard to keep track of it all. Here's just a PARTIAL listing. Ugh.

• Merrem (IV)
• Coly-Mycin (IV)
• Pulmozyme
• Tazacef
• Hypertonic Saline
• Xopenex
• Zithromax
• Advair
• Sporanox
• Levaquin
• and something for C. Dificile.

With all these meds running through my bloodstream, it's little wonder that I'm so tired. I'm also being exceptionally diligent with my new vest. I'm keeping an eye on my blood sugars, and I'm trying to eat like a horse.

Admittedly, all of this stuff is discouraging. I have trouble understanding why all of these thing that are supposedly "helping me" don't seem to make a difference.

I got some bummer news today too. My favorite person at the CF Clinic has retired. I'll miss her terribly. I had no idea she was going to leave. She just sort of disappeared. That explains why things have been in chaos over there lately. The remaining staff must be scrambling to keep it all together in her absence. This makes me even more reluctant to continue with the adult CF clinic. I haven't been that impressed with them as of late, so maybe this is just the situation I needed to get me to investigate other possibilities.

Nonetheless, there are happy things on the horizon. My e-book, Dear Future Husband, will be available soon. I'm just working on the last bits of editing before I can send it off to the publisher. Keep checking back for updates and for more information about pre-sales.

I'm still off work, and have a long course of IVs ahead of me. In the meantime, I'm passing the time by writing and selling a few articles here and there. Here's the latest that was published along with the following comment from the editor:

Teamwork in the Work Environment

"This is very well written and informative. Be sure to promote this!"

An ancient CFer meeteth three young adults bidden to a care center, and detaineth one.

It is an ancient CFer,
And he stoppeth one of three.
`By thy thin frame and oxygen hose,
Now wherefore stopp'st thou me ?

The clinic's doors are opened wide,
And I am next of kin ;
The patients met, the stage is set :
May'st hear the merry din.'

He holds him with his skinny hand,
`There was a neb,' quoth he.
`Hold off ! unhand me, cepacia'd loon !'
Eftsoons his hand dropt he.

The young adult is spell-bound by the eye of the old CFer man, and constrained to hear his tale.

He holds him with his glittering eye--
The young adult stood still,
And listens like a three years' child :
The CFer hath his will.

The young adult sat on a stool :
He cannot choose but hear ;
And thus spake on that ancient man,
The bright-eyed CFer.

`The meds was cheered, the airways cleared,
Merrily did we cough
Below the kirk, below the hill,
Below the lighthouse top.

The CFer tells how life progressed with a good wind and fair weather, till it reached the new baseline.

The peak flow came up upon the left,
Out of the tidal breathing came he !
And it shone bright, and on the right
Went down into the FEV.

Higher and higher every appointment,
Till one day, too low to believe--'
The young adult here beat his breast,
For an "oyster" he had to heave.

The young adult heareth the receptionist ; but the Mariner continueth his tale.

The CF team hath paced into the hall,
and masked and gloved are we ;
Nodding her heads before them goes
The nurse and lone R.T.

The young adult he beat his breast,
Yet he cannot choose but hear ;
And thus spake on that ancient man,
The bright-eyed CFer.

The meds flowed by gravity from an IV pole.
`And now the Psuedomona came, and he
Was tyrannous and strong :
He struck with his o'ertaking wings,
And made me cough so long.

With sloping posture and dipping brow,
As who pursued with yell and blow
Still treads the shadow of his foe,
And forward bends his head,

The docs drove fast, loud roared the blast,
To the hospital aye we fled.
And now there came both mist and vest,
And it grew wondrous cold :
And sputum cups, mast-high, sent out for tests,
As green as emerald.

Disabled Christianity

Christians with disabilities deal with an entire different set of trials than just those presented by the disability itself. Although we understand that physical suffering is the result of sin in the world, we find it difficult in our lowest points to hold tightly to faith. Even if our hearts know that God does not give us more than we can handle, we question Him.

I found this blog the other night, and thought I'd share it with my readers. I received a very nice email from Prof. McNair when I asked his permission to link to his site. There's a lot of good stuff on it. Plenty of food for thought as well as encouragement.

Please take some time to visit it, and if you're so inclined, comment on your experience at the site.

I have a new vest,the inCourage version from Respirtech, and I am demo-ing the Thayer Quake to see if I can't improve my FEV1. So far I'm REALLY pleased with how much gunk is coming up during and after each vest treatment. The vest I had before never did that.

Today as I was relaxing in the bath I felt a few oysters on the rise, and I was SO comfortable that I didn't want to have to move at all just so I could go spit into the trashcan. The toilet seat was still up from my having cleaned it earlier in the day I thought...hmmmm..."I wonder if I could make that shot?" I horked up a good one. Nothing but net! er, I mean water. Instead of a swish I heard a splash and silently congratulated myself on hitting the target.

With the taste of victory (and a salty mucous wad) on my tongue I arched my neck and tried it again. 2 points! I played this silly game for a few minutes. Out of 15 shots fired I only missed 2. One I overshot and had to wipe off the wall, and the other caught some sort of tail wind from the bathroom fan and went rogue on me.

Airway clearance has never been so exciting! I'm thinking of installing a scoreboard above the toilet tank. Then again, maybe I've been watching too much Home Improvement.

I'm a O80-C92-E93-A32-N43 Big Five!!

I'm a Fieldmarshall (ENTJ)

Of the four aspects of strategic analysis and definition, it is marshalling or situational organizing role that reaches the highest development in Fieldmarshals. As this kind of role is practiced some contingency organizing is necessary, so that the second suit of the Fieldmarshal's intellect is devising contingency plans. Structural and functional engineering, though practiced in some degree in the course of organizational operations, tend to be not nearly as well developed and are soon outstripped by the rapidly growing skills in organizing. But it must be said that any kind of strategic exercise tends to bring added strength to engineering as well as organizing skills.

Fieldmarshals will usually rise to positions of responsibility and enjoy being executives. They are tireless in their devotion to their jobs and can easily block out other areas of life for the sake of their work. Superb administrators in any field -- medicine, law, business, education, government, the military -- Fieldmarshals organize their units into smooth-functioning systems, planning in advance, keeping both short-term and long-range objectives well in mind. For the Fieldmarshals, there must always be a goal-directed reason for doing anything, and people's feelings usually are not sufficient reason.

They prefer decisions to be based on impersonal data, want to work from well thought-out plans, like to use engineered operations -- and they expect others to follow suit. They are ever intent on reducing bureaucratic red tape, task redundancy, and aimless confusion in the workplace, and they are willing to dismiss employees who cannot get with the program and increase their efficiency.

Although Fieldmarshals are tolerant of established procedures, they can and will abandon any procedure when it can be shown to be ineffective in accomplishing its goal. Fieldmarshals root out and reject ineffectiveness and inefficiency, and are impatient with repetition of error.

A: Attached or Single?: Attached to Brad till death do us part.

B: Best Friend: Danielle

C: Cake or Pie? Mmmmmmmm, pie. Especially the banana cream type.

D: Drink of Choice? Cranberry juice

E: Essential Item: My Bible

F: Favorite Color: lilac

G: Gummy Bears or Worms: Worms

H: Hometown: Ontario

I: Indulgence: Carmel filled dark chocolate espresso.

J: January or February? February. It’s when Brad and I had our first date.

K: Kids: None. We have fish.

L: Life is incomplete without: Brad

M: Marriage Date: 7/5/03

N: Number of Siblings: 1

O: Oranges or Apples? Apples. They can be dipped in peanut butter.

P: Phobias/Fears? The dark, and elevators.

Q; Favorite Quote: 1 Corinthians 1:8 He will make you strong to the end so that you will be blameless on the day of our Lord Jesus Christ.

R: Reasons to Smile: Brad, God's goodness in our lives, friends' babies always make me smile

S: Season? Spring

T: Tags: Huh?

U: Unknown fact about me: takin' it with me to the grave, folks

V: Vegetarian or Oppressor of Animals: Definitely a meat eater.

W: Worst Habit? Worrying

X: X-rays or Ultrasound. Neither. CT scans

Y: Your Favorite Foods: Belgian waffles with strawberries and whipped cream. Heavy whipped cream.

Z: Zodiac? Phooey

Cystic fibrosis is a devastating genetic disease. Research and care supported by the Cystic Fibrosis Foundation is making a huge difference in extending the quality of life for those with CF. However, we continue to lose precious lives to CF every day. That's why your help is needed now more than ever to ensure that a cure is found sooner - rather than later. To learn more about CF and the CF Foundation, visit www.cff.org.

Allow me share some facts about CF with you:

• The median age of survival for patients with CF is 36 years
• CF is a progressive disease, and requires daily maintenance that includes vitamin supplements, chest physiotherapy, dozens of medications like antibiotics (some inhaled and some taken orally)
• Pneumonia and bacterial infections are a common occurrence. This leads to hospital visits and intravenous antibiotic treatment.
• Approximately 30,000 people in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene

The severity of cystic fibrosis symptoms is different from person to person. The most common symptoms are:

• Very salty-tasting skin
• Persistent coughing, at times with phlegm
• Frequent lung infections, like pneumonia or bronchitis
• Wheezing or shortness of breath
• Poor growth/weight gain in spite of a good appetite
• Frequent greasy, bulky stools or diificulty in bowel movements
• Small, fleshy growths in the nose called nasal polyps

If you would like to help cure cystic fibrosis and provide hope for a cure to those who battle this devastating disease, you may donate to the Great Strides campaign. Your donations are tax deductible. 90% of each dollar donated is used to fund cystic fibrosis research. HELP CURE CF! And spread the word that May is CF awareness month.



Did you know that 1 hour of research costs $12,000?


So far I have raised 30% of my goal for Great Strides Donations. I'd like to raise $5,000 or more! Please help me succeed

You can read more about CF at the following links:

Blogging about CF
CF and the Battle Against Bacteria
Progression and Treatment of Bowel Obstruction in CF
A Day in the Life of Someone with CF

YouTube Video of a Day in the Life of Cystic Fibrosis

I've been home now for almost 2 hours! I came home with 2 grocery sacks filled with meds. There's something not quite right about spending all that money just to be able to function as well as possible. Ick.

This time I had antibiotics on top of antibiotics--7 all together. Cepacia was flaring up, and my IgE was 1400, indicating that ABPA was raising its ugly head. Top it all off with a case of C. Dificile, and you have one sick puppy.

Amazingly, my spirits remained high this time, especially since my FEV1 upon discharge was higher than it's been in a long time. I still have some ground to regain, but that's okay. I'm continuing IV meds at home, and will check back for another round of PFTs next week. Yippy Skippy!

I have officially launched my latest blog. It will be more of a resources page/e-zine than a play-by-play journal about my personal experience with CF. I will continue to post the personal stuff here. For more clinical information and useful links, I invite you to check out the new site.

Blogging About CF