Breathing Deeply: My Life With Cystic Fibrosis

An optimist stays up until midnight to see the new year in. A pessimist stays up to make sure the old year leaves.

--Bill Vaughan





Tonight we bid an untimely farewell to my little fish, Othello (an African tetra, get it?) Apparently he was in a rumble with the other tetras, and was mortally wounded. I happened upon my scaly friend's near-lifeless body about 11:00 this evening. There he was, floating listlessly, suspended by wisps of sea-grass. I watched with sorrow as his ravaged body gave its last attempt to move water across his gills for oxygen.

Then it was over.

Gently I lifted his lifeless form from the water using the green net. Then Brad and I ceremoniously paraded to the master bathroom. After all, what could be more fitting than to send brave Othello to his final resting place than to do so via the master bathroom plumbing? With a silent splash, he was laid to rest. The silver handle of his porcelain chariot was tipped once with reverence. We closed the lid and stood in silence.

Such was the closing of this final hour of 2006. Farewell Othello. You will be missed.

Those who refuse to make New Year's resolutions because they always break them anyway miss the point. Making resolutions is a cleansing ritual of self-assessment and repentance that demands personal honesty and, ultimately, reinforces humility. Breaking them is part of the cycle.

--Eric Zorn

As the calendar page turns from 2006 to 2007, many of us will once again seek to remake ourselves into a better, happier, healthier person in the new year. We resolve to cut back on certain guilty pleasures and pursue those that are more fitness oriented. Local gyms will experience an influx of new members. However, come February many of those members will have settled back into their old habits and old routines, frustrated by their lack of stick-to-itiveness.

Studies have shown that a person who does not engage in activities that are “others” oriented is much more likely to experience bouts of depression. The good feelings that arise from helping others or contributing to something meaningful are enough to make even the chronically ill feel better.

With the freshness of 2007 still in your mind, consider making a resolution to help others and avoid the self-deprecating feelings that settle in once the initial surge of will-power has died out. Those who live in the San Diego area are encouraged to spend their energy helping the local chapter of the Cystic Fibrosis Foundation this year. There are dozens of ways to get involved. Here are just a few of special events to consider.

• March 10, 2007

Breath of Spring Guild Gala

This black-tie event, held at the Hyatt Regency La Jolla, includes a lavish meal, live and silent auctions.

• March 24, 2007
  

StairClimb

This year is the 25^th annual StairClimb. Participants raise awareness for Cystic Fibrosis by climbing up all 32 stories of the tallest office building in downtown San Diego. Food and fun at the Survivor’s Party round out the event; awards and presentations are also made to the group.

• April through September, 2007

Take me out to the ballgame! The 65 Roses® Sports Club has partnered with the San Diego Padres to raise money to cure cystic fibrosis. A nominal membership fee is required to join, and entitles members to 4 tickets to each of 6 games. Members are asked to pledge to donate $15 for every homerun the Padres score. Buffet food, snacks and the opportunity to have autographed photos with the players make for a winning combination for the participants and the CF Foundation.

Everyone who volunteers is of special importance to the Foundation and the cystic fibrosis community. Volunteering is a wonderful way to meet new people, make an impact in someone’s life, and ultimately, bring a little bit of something better to your particular corner of the world. The ways to volunteer are as unique as the volunteers themselves. It has been said that 90% of the work is just showing up. Imagine how far into the new year that remaining 10% can stretch.

Don't forget, you can also donate online to Great Strides, the largest CF Fund raising event via my Great Strides page. I plan to participate as an "Angel Walker" again this year and hope to raise more than $5,000 in for the CF Foundation through my letter writing campaign. If you would like to donate, please do so by following this link.

For more information about these events or other ways to volunteer your resources and time, please contact the San Diego CFF office at 858-578-2945 or stop by at 9820 Willow Creek Road, Suite 245, San Diego, CA 92131. Office hours are Monday through Friday, 8:30 a.m. to 5:30 p.m.

Winter lies too long in country towns; hangs on until it is stale and shabby, old and sullen.













Here in San Diego we don't experience the joys of winter weather in quite the same way that other parts of the country do. As a coastal region, the temperature doesn't fluctuate much, which is generally a good thing for my health. Today however, I'm struggling with my allergies thanks to the windy weather.

During the night it rained a bit, and Brad told me that even for awhile this morning it was raining. Now it's blowing like crazy and doing so quite loudly! I thought there was something weird going on with the traffic on the street in front of our home. I looked out the window expecting to see a big piece of construction equipment or something, but all I saw was all the trees nearly bent in half under the force from the wind.

The screens are rattling fiercely against the windows and the rain gutters are shivering violently too. It's creating quite a racket. They sound like an empty flatbed diesel truck struggling to drive uphill through gravel. Really. It's that loud. Fortunately, I have a sturdy set of earplugs that will come in handy when I decide to take another nap (which is probably in the next hour or so.)

Healthwise I'm still not doing much of anything spectacular. I'm still trying to take it easy on my stomach so that I don't scare it. I'm adding Scandical to just about everything so that I can boost my caloric intake even though my appetite is slim. I did come up with a good smoothie recipe yesterday. I call it the "Soothing Smoothie". It's 2 containers of Yoplait strawberry yogurt, 4 tablespoons of Scandical (120 extra calories), and 3/4 cup of Dole Pine Orange Banana juice. The whole thing fit nicely in the Magic Bullet and I drank a nice tall glass of it. I also snacked on a slice of banana bread, liberally spread with real butter. If that's not a high calorie snack, I don't know what is.

My concentration is slowly improving too. Ever since I was admitted to the hospital back in November, I've been so out of it that I couldn't even focus enough to read a book. I got some good books for Christmas that I'm looking forward to finishing at some point. Last night was the first time in quite awhile that I spent time reading. I got through almost an entire chapter of "Sisterchicks in Gondolas" (by Robin Jones Gunn) before my brain got tired. I think I'll give it another shot this afternoon.

Other books on my reading list during my recuperation include The Proof by Austin Boyd (I strongly recommend his work for any of you who like realistic science fiction) and Paradise Lost by Milton. Yes, I know, that last one is a bit heavy, but I think it will be good creative writing fodder. We live just a block away from the local library, so I know I won't be hurting for literary stimulation over the next while.

Now if you'll excuse me, there's a nice toasty electric blanket all warmed up for me. It would be a shame to let it go to waste on such a day!

With all the craziness that's been going on in our lives lately, I never got around to sending out any Christmas cards. Here's a photo that I took of us at our Christmas party earlier this evening. The angle is weird, but so what. The point was to capture our smiles in photographic form, and I succeeded in doing that.

This Christmas has been particularly meaningful in light of all that has happened. It's a sobering thought to realize that I almost wasn't around to see this day. I'm awestruck to think back over the past month and see how dramatic my progress really has been. A month ago I could hardly walk across a room without stopping to rest. Two weeks ago I woke up in a strange room with all sorts of wires and tubes hooked up to keep me monitored. A week ago I was struggling to eat an entire meal that wasn't primarily made up of liquids.

All I can say is that God has brought me this far, and it is God who will lead me in the days to come.

This Christmas has been a celebration of joy in many forms. Ultimately it has been the celebration of the joy I have in knowing that centuries ago the Messiah came to earth in human form as a helpless infant. That tiny child was part of God's plan to ensure my place in eternity. No matter what I go through on earth, I know that my future is spoken for--I belong heart and soul to God. Not even death can sever that bond.

May the true spirit of the season be in you heart and may you find the peace, hope, and joy that I have.

Merry Christmas,

Lauren

Raise your hand if you like free stuff. Okay, I see a lot of hands there. Here's how you can you can flex your creative muscles and do something positive for the CF Foundation's Annual "Great Strides" walk. Oh, and you can win a free t-shirt too.

It's easy, painless. Remember, nothing ventured, nothing gained. The deadline is January 4th, so put on those thinking caps and get moving! Even if you don't enter the design contest, please consider making a year-end donation to the CF Foundation.

This contest is part of an ongoing effort by my friend Allie, a CF widow, and her late husband's mother, to generate awareness and raise funds for the CFF's annual Great Strides event. Below are the details for getting involved. All purple text is directly from Allie.

I finally broke back into my cafepress account, after having some trouble, and uploaded brand new designs! I you want to see them, they are in morbid humor, loved ones, and Cf shirts. If you've never seen the store, or can't remember the address, go to http://www.cafepress.com/rys_shirts.


We've raised 310 dollars so far for the CF walk in May, and thank you guys so much for supporting me and the store!


In another effort to give back to those who support us, Hannah and I are having a design contest for December. Send in your fully formed design to ryallieahava@yahoo.com, for a chance to win. Entry deadline is Jan 4th, and the winner will have thier design featured in our store, with a note saying it is your design, as well as a free t shirt with your design on it! Entries will be judged by January 15th.


Rules :
* No copyright infringement

* Sent in a windows bitmap format, preferably.

* must be a ready to roll design, not a design idea.

* We reserve the right to distribute your design through our store.

* you may enter as many or as few designs as you want.

* We are the sole judges of the winner.

So please, send in your entry! We'd love to see what idea YOU have.

And mamma in her 'kerchief and I in my cap,
had just settled down for a long winter's nap,














We've had plenty of activity over the last couple of days, but nothing too strenuous. I've been doing a good job of pacing myself and not expending every ounce of energy as soon as I get it. Last night my side of the family came down to celebrate Christmas. It was a real treat to host the festivities for the first time since we've been married. We set the table with our wedding china (the pattern, incidentally, is called "Wedding Band") and Mom let me borrow her Christmas stemware with the holly branches on it.

The party didn't go too late, but even so, it was more exertion than I'd had in awhile. Before long I had fallen deeply asleep on the couch. Brad said I looked like I was sleeping so soundly that he didn't dare wake me up. I stayed down there all night and didn't wake up until well after 10. Ahhhh...finally, a night of uninterrupted sleep.

For breakfast/brunch we tried out the new Belgian waffle iron. Wow! That thing really cranks out waffles in a hurry. I think it took less than 2 minutes for each one to be fully cooked. After that we got ready to go up to Mom and Dad B's for their Christmas party. Unfortunately, that one didn't go as planned. There was a big problem on the freeway (a police standoff and a hostage situation), and the rest of the family couldn't make it down so they ended up turning back. We were disappointed not to get to see everyone, but that didn't mean we didn't enjoy the time to ourselves with Mom and Dad. There was more than enough food for us. I think I have a new favorite jell-o dessert. It has fresh fruit (like strawberries) in the bottom portion, and the topping is a combination of sour cream, marshmallows and whipped topping (I think.) Now I know what to say the next time my mother-in-law asks if she can bring anything when we get together! Yummmmm!

Before dinner at Brad's folks, I had a chance to take a nap in the spare room. At first I felt weird taking a nap at someone else's house, especially when we were there for a party, but the rest did me good. I know they didn't mind at all that I needed a little break. I'm finally getting to the point where I'm not ashamed or apologetic to ask for what I need. I don't like to appear wimpy, but needing to promote good health is not a wimpy act--it's a wise one. Besides, the nap gave me the recharge I needed. I even felt good enough to drive home.

The drive home was nice and peaceful. The freeway was relatively empty. We made it home in a decent amount of time, and got some excellent mileage too. Since we drive a Prius, it's fun to see which routes are the best for achieving high MPG. Our current average is 54.3. Not bad, eh?

Once back home Brad promptly changed into his lounge pants and t-shirt (we call this "the jammy-ish). "The Sound of Music" was playing on television and we watched part of it together. Before long "The Sound of Snoring" filled the room. I looked over at the recliner and was not surprised to see that Brad was all sprawled out, contentedly sawing logs. His glasses were still on and the TV remote was secured beneath his folded arms. I couldn't resist--I had to take a picture. Isn't he cute?

Of course, one picture wasn't enough for me. I went off in search of Christmas ribbon and proceeded to decorate my sleeping husband. First I just put one bright purple bow on his head. "Click" went the camera. Stifling my giggles, I grew a bit braver. I went downstairs and retrieved a garland. I wrapped that around him but he began to stir just as I was about to snap a picture. I managed to photograph a very sleepy and disoriented Brad lifting the garland off his shoulders. After that he mugged a little for the camera and I did get a pretty cute one of him.

We do silly things like that together all the time. A lot of our best memories are of times we've spent just goofing around. We have a whole vocabulary of made up words that mean nothing to anyone except us. From the night we first met, humor and good-natured banter has been a big part of our relationship. Even though we've faced some very somber issues head-on in our time together, God always gives us a reason to smile. Not only do we smile, but we have the true joy that comes from a relationship with Jesus. As we continue to celebrate and create fun memories this Christmas season, I look forward to seeing what else God may have to teach us.

Why do they call "taking it easy" but it still seems so difficult?

Flutter Valve

The Flutter Valve is one of the first portable devices invented for lung exercise in CFers. Its main purpose is to aid mucous clearance by providing positive pressure and a vibration within the lungs.

The most notable downside with the Flutter is its overall comfort. The entire thing is made from sturdy, unyielding plastic and is difficult to hold easily in the mouth. It is not a "hands-free" device, which is cumbersome for "on-the-go" types. Another disappointing aspect is that there is no way to increase or decrease the positive pressure exerted on the lungs.

Despite its aesthetic shortcomings, it is a nice small unit; very discrete. Comprised of only 5 separate pieces, taking it apart for cleaning/sterilization is a snap. A prescription may be required in order to obtain a Flutter Valve.

You can purchase the Flutter Valve here.


Acapella

The Acapella functions in much the same way as the Flutter Valve. It generates vibrations and which aid in mucous clearance. It is a hand held device and a great deal larger than the Flutter.

A positive aspect of the Acapella is that the amount of resistance/oscillation is adjustable. The range of resistance is excellent, which makes it useful for most any degree of lung function. This product is pricier than the Flutter and has more pieces when it comes apart, making it more difficult to clean/sterilize. Like the Flutter, this is not a hands-free device which makes it less suitable for working in those treatments on the go.

There are 3 varieties of Acapella, each designed to accommodate a different level of air flow. In order to select the right one, the user should be relatively familiar with his/her present lung capacity.

A prescription may be required in order to obtain the Acapella.

Purchase an Acapella here

Expand-A-Lung

This product is not generally used for CF patients. However, research has been conducted on its efficacy for use by patients with chronic obstructive pulmonary disease (COPD). The Lung-Expander was designed for athletes who want to increase their ability to breathe effectively.

Unlike the Acapella and the Flutter, the Expand-A-Lung does not have a built-in functionality for loosening mucus. Its sole purpose is to increase lung capacity. According to the published studies, it does this quite well.

Positive elements of the Expand-A-Lung are its price, size, and design. It costs half as much as the Flutter valve, and comes with a set of recommended breathing exercises. Satisfaction is guaranteed and it can be returned within a trial period of 30 days. Because it is only 4 inches long, the Expand-A-Lung is discrete and portable. The silicone mouthpiece looks quite comfortable and naturally prevents the user from breathing incorrectly (i.e. puffing out the cheeks.)

Like the Acapella, the Expand-A-Lung is offers varying resistance settings, which makes an individuals progress more easily detectable as lung function improves.


In order for this product to be maximally beneficial for a CFer, it would probably have to be used in conjunction with a vest treatment.

No prescription necessary.

Purchase this product here

Unless we make Christmas an occasion to share our blessings, all the snow in Alaska won't make it "white".

What's the good of a home, if you are never in it?



Hello everyone!

I got to come home on Friday night already! The whole ordeal spanned three long, sometimes worryisome weeks, but that's behind me now.

The doctors tapered my TPN dosage throughout the day and by dinner time I was already able to eat soft foods with out any problems of the gastro-intestinal variety. My appetite is still a bit small though after so many days without "real food."

My lungs still have a ways to go to be fully functioning at baseline, but my doc is convinced that I made enough progress on the IV antibiotics to be able to reach that point soon at home. Home. What a great word. It's so awesome to be home and not dealing with all of the home infusion hubbub. No home healthcare nurses or pharmaceutical deliveries at odd hours, no portacath dressing changes...just me, Brad, some comfy pajamas and a cozy warm bed.

The first thing I did was soak in a hot bath while attempting to scrub the adhesive residue off my arms, neck and face. Why is that stuff so persistent? Why does the gunk that accumulates first around the edges take so long to go away? I shall forever be perplexed by this phenomenon.

This entire experience has, again, stretched my faith to its limits. Still I know that God is mighty. Without a doubt he has used this particular incident to make me stronger again than I ever thought possible. I came through things I never dreamed I'd need to face. I dodged surgery, endured one of my longest hospital stays on record, and even came through a code blue. Each of those things took its toll. No matter what lingering effects I may have, what matters is that I'm THROUGH them. God is faithful; God is mighty.

Thank you to anyone out there who has held me in their thoughts and prayers over the last few weeks. I am truly blessed by the outpouring of support and encouragement that I've received.

In His Steadfast Grip,

Lauren

I seem to get very little done that I want to do... I get so homesick some days.

It has been said that idleness is the parent of mischief, which is very true; but mischief itself is merely an attempt to escape from the dreary vacuum of idleness.


--George Borrow




The above quote couldn't be any more appropriate for my experience last night.

I've been in the hospital now for 12 long and boring days. I'm still feeling too sick to do much of anything other than write and do Sudoku puzzles. I haven't been glum or crabby, like other times when I'm in the hospital. Having some of my familiar things from home helps a lot with that.

Yesterday afternoon/evening I had a little more energy than usual and I didn't want to waste it just channel surfing all evening. I called Brad and asked him to bring over some of my Christmas sheet music. I was bound and determined that I was going to play the grand piano that sits downstairs in the atrium.

I put on clean pajamas, brushed my hair, donned a red sweater (to get in the holiday spirit). IV pole in tow, Brad and I proceeded down the hall and toward the elevator. While in the elevator we discussed our mischievous plan. Brad would pull the plug on the player piano while I seated myself on the piano's bench.

*ding!*

The elevator doors opened and we simultaneously sucked in deep breaths. There was no turning back. Onward to the piano!

We thought we timed it perfectly. It was just late enough in the day that there weren't many people milling about to spot us. It was early enough in the evening that we weren't afraid of violating any quiet hours or something like that. We thought our little plan was going to come off without a hitch.

No such luck. No sooner did I sit down at the piano than a burly campus security guard barked at me. I told him I had my nurses permission to play the piano. He disagreed. For about a minute we argued about whether or not I had the authority to play such a fine instrument. He was convinced that my playing it would somehow disrupt the MIDI files that it runs when it's functioning as a player piano. He asked my name and I showed him my patient wristband. I don't know if he can't read or what, but he asked me to spell my name. I wanted to say "m-y n-a-m-e" but I kept my mouth shut.

Bitterly disappointed, I slunk back to my room on the 3rd floor. I told the nursing staff what had happened and they confirmed that "Barney Fife" of campus security was just a jerk.

Mark my words, I will play that piano. It's just a matter of time.

Be as a bird perched on a frail branch that she feels bending beneath her, still she sings away all the same, knowing she has wings.