Breathing Deeply: My Life With Cystic Fibrosis

Yesterday we received utterly shocking news that our friend, David Matthieu, went home to be with the Lord a week and a half ago. I don't know the exact details other than that he had an accident at home and passed away rather suddenly.

This is the second time in as many weeks where I've received this sort of news. I take comfort in knowing that David was living an honorable life, one that was pleasing to God.

One of David's favorite passages in the Bible was the parable of the sower. It was this parable, visualized in the stained glass of Community Reformed Church, that made him feel at home right away. He took his role as a sower very seriously. He volunteered with teens. He learned guitar just so he could be part of the music ministry at church. He was quick to lend a helping hand at just about anything, often staying well past the close of an event just to make sure it got cleaned up and put away. I'm especially appreciative of his willingness to donate his time and energy to raising awareness of cystic fibrosis. His life was a wonderful witness of God's faithfulness, and I pray that the seeds David sowed in his time here on earth, will take root.

I will miss him and his emails. I will miss his his enthusiasm and encouraging spirit. He was one of the most giving and selfless people I know. We often talked about the ways that God was giving us the strength we needed to live one day at a time. David was a wonderful example to me of what it means to be a prayer warrior. He thought the world of Brad, even though they'd only spoken a few times.

David is now counted among the great cloud of witnesses as mentioned in Hebrews 12. I'm praying that anyone who knew him would follow his example to throw off sin that so easily entangles, and run with perseverance the race marked out for them. David is no longer "chasing the wind" as he used to say.

Glad you made it home, David. Save us a seat; we'll join you when God's finished His work in us here.

"Orphan Drug."

It's a term that appears frequently in medical journals or news articles about cystic fibrosis. You may have seen this word and not known what it is, or even cared.

An orphan drug is one that generally only gets research grants from the government. Why? Because there is no financial incentive for larger pharmaceutical companies to put the time and effort into research, because the drug will only be used to treat a rare condition. According to the FDA, an orphan drug is classified as such because it will only be beneficial to a population of fewer than 200,000 Americans.

Cystic fibrosis is just such a condition. Cystic fibrosis affects only 1 in 3,500 people in the United States. In the present decade there has been a great deal of advancement in the treatment options for cystic fibrosis. Sadly, it is still a killer disease. CF kills children, teenagers and adults. The median survival rate of people with cystic fibrosis has been a scant 36 years. Although the disease is treatable, there are limits to the medications that are available.

In order for the treatment options to become available to me, and others with this life-threatening illness, we need to rely on the Federally funded financial incentives offered to drug companies. One hour of research costs approximately $12,000. Imagine how huge the bill would be for the entire length of time it takes to put a new drug for CF on the market.

You can help foot the bill for life-saving research. By donating to the Cystic Fibrosis Foundation, you are part of the team that enables patients with cystic fibrosis to live and breathe tomorrow. You can make a difference. I'm doing what I can to raise $5,000 before September 15, 2007. Please donate to the Cystic Fibrosis Foundation on my behalf. Your gift is tax deductible and $0.90 of every dollar goes directly to research.

Here is a link to my donation page. Thank you for your help and support.

I first cultured cepacia about 10 years ago. And when I say cepacia, I mean the big ugly version that made my doctors cry when they gave my family the diagnosis.

That was 10 years ago. The extent of my lung disease has dramatically decreased because of this formidable monster. For some, cepacia ushers in an instant death watch. Cepacia syndrome has claimed too many of our friends, and it's vicious, unforgiving, and brutal.

So why am I still here? Why is it that when I should have succumbed to the ill-effects of this heinous little gram-negative bug, I have rallied? Here's a list of what I believe is sustaining me.

1. God's mercy
2. Diligence and compliance with treatments
3. Wonderful doctors who help keep other infections at bay
4. The synergistic effect of antibiotics
5. Tenacity on my part

My health is not in tip-top shape. But I'm in a holding pattern. Cepacia may have colonized me, it may be killing me ever so slowly, but I'm still fighting. My demise will come when there are no longer new tricks to play on cepacia. Then, and only then will my fight be over. No transplants for me. When my body has had enough, I will go peacefully--without protest, without regret.

I refuse to be my own worst enemy when it comes to CF. I can control my own actions and attitudes about this disease. The rest I leave in God's capable hands.

I don't know where to begin. I guess I'll just say that I'm hurting right now. I just got the news that one of my cystic fibrosis pals passed away. It's surreal now to read her last blog post. Only 5 days ago she was writing about how she felt that she was getting back on track. She felt tired and worn out, but overall encouraged. She was especially looking forward to being a part of the Tobramycin Inhaled Powder (TIP) medication study.

Only 5 days ago her lung function was beginning to improve. Only 5 days ago she felt she was at least starting to be on the mend. Then her oxygen saturation dropped. Her lung function dropped. Her coughing increased. She worried about sounding like she was whining about not feeling well. Just like a strong CFer--not wanting to complain about health.

I'm choking back tears and remembering how lively our last conversation was. She was almost always online at the same times I was. We craved the same snack foods and would often interrupt our IM sessions with "BRB, need snacks." My heart is heavy and I'm sure the moisture in my eyes is going to spill over my lids at any moment. I'm trying to do something constructive with my grief. I wrote a horribly insufficient note of sympathy and condolences to her mother. I read and re-read her last few blog posts looking for any clue that may have said she knew the end was near. Her second to last blog post was a lot about how she hoped she would go when her time was up. I suppose we should be thankful that her last hours were peaceful and she merely slipped out of this world and into the next.

My heart is breaking as I wonder what she's seeing in the next life. From what I knew of her, she did not have a relationship with Jesus. That's the most tortuous thought in my mind right now. Only God knows what was in her heart. Battling cystic fibrosis is it's own sort of hell; I want so badly to know that her suffering has ended. I'm fearful that it has only just begun.

Five days ago she was flesh and blood, interacting with the world around her.S he shared her wit, her smile, and her love of shoes with all of us. And like that...she was gone.

It's now late evening and after a good cry over losing a friend and letting my husband hear my fears about my own mortality, I've decided to honor Debbie's memory by sharing a little more about her. Here's just one example of her sense of humor: the image she used to adorn her signature in all her posts at cysticfibrosis.com

She was always ready to send out the Welcome Wagon whenever new members joined at cysticfibrosis. com. Her hospitable nature influenced me to make sure that I was welcoming of new folks too. She didn't just do a "throw away" note that simply said "welcome to the group." She offered to open up and share herself with people so as to let them know that they were truly joining a support community. One of the things she did was take it upon herself to post a little "get to know you" questionnaire every so often.

Debbie had a quick wit. Some of my favorite online conversations were the times when she and 2 other gals our age met up in the chatroom on the website. We'd "ROFL" over just about anything. The later it got, the punchier we'd get. Eventually we'd all be coughing our guts out from laughing so hard. For CFers, laughter isn't just good medicine, it's good airway clearance! Debbie shared in my enthusiasm when I became the proud owner of "The Shoes." Those black patent leather Steve Madden peep-toes are the crown jewel in my shoe collection. She understood that.

We talked about deeper stuff too. We helped each other comb the social security administration's website in search of info about how disability benefits are applied to CFers. We griped about incompetent lab technicians. We encouraged each other to eat, eat, eat and breathe, breathe, breathe. I had only known her for 11 months, but I'll remember her forever.

My husband is, as my extended family says, "a gem." He began a relationship with me knowing full-well about cystic fibrosis. Although he couldn't possibly have understood it in all its mucus-producing glory, he took it upon himself to learn what he could about it. Throughout out dating years, he was introduced to more of the day-to-day aspects of managing the disease. If there was ever anything about it he didn't understand, he asked me.

I did my best not to overload him with information or frightening statistics. I often reminded him (and myself!) that cystic fibrosis can be quite different in presentation from one patient to the next. Some people are able to enjoy a long period of mild symptoms, while others are hit hard by infections early in life and experienced a rapid decline of health. For the most part, he and I were learning alongside one another about my particular form of the disease.

When we got married four years ago, we had more things to learn about how to manage cystic fibrosis together as a couple. For most of my life I had been utterly discrete about many aspects of it. For example, it wasn't until we were married that my husband actually saw me take my enzymes before meals. He knew I took them, but I had developed such a stealth system of taking my medication that I was able to have that part of myself proceed virtually undetected. One of the other things that he didn't see until we were married was the whole tune-up (IV medication) regime and all it involved.

Once we were officially husband and wife, we not only learned about all of each other's idiosyncrasies, but also the ways we expressed support and encouragement. Brad had to learn that I didn't want him to say "are you okay" after every cough. I had to learn to let him help me do the things that I had previously been very independent about. Together we have learned that a successful marriage requires that we each allow ourselves to be completely vulnerable to the other. I feel most supported by my husband when he listens to me. I can admit to my husband when CF frustrates, exhausts, or depresses me. These are thoughts and feelings that no one else in my life has access to. Whenever he thinks I'm being too pessimistic or stubborn about my never-ending parade of treatments and doctor appointments, he says so. He never passes judgment on my feelings, but simply allows me to express them.

Brad is becoming increasingly knowledgeable about cystic fibrosis and how it affects me. He offers to pick up dinner when he sees that I'm not quite feeling my best. He tolerates my inability to be a perfect homemaker. He understands that sometimes it's more important that I take a nap than spend time folding the laundry. We work together as a team to ensure that our household runs smoothly. He does everything in his power to support us on the emotional, spiritual and financial levels. He encourages me to put my gifts and abilities to good use in the workplace, but he knows that my health will always come first.

My husband is a blessing to me. He and I have made a lot of difficult decisions together. We've laughed, cried, smiled, grimaced and even dropped our jaws in awe at the things that have happened in the short time we've been married. My husband is a man of incredible virtue and character; he demonstrates that in the way he handles himself in our marriage. Even if I didn't have cystic fibrosis, I believe he would still amaze me in how he manages the variable aspects of life. The presence of cystic fibrosis in our marriage has, in many ways, served as a means for God to allow Brad's character to shine brightly. This is why he's a gem. This is why I'm proud to call him my husband.

I love you, Brad.

About three weeks ago I posted the news that a fellow CFer who happened to be a newlywed, received a double lung transplant. Today there was an update in the Los Angeles Downtown News online about his story and how things are going.

I spoke on the phone with Danielle a little while ago and she said that things are really going well. She sounded very much at peace and quite chipper! Even though she's not the one whose body is recovering from major surgery, I'm sure she has experienced quite the surge of emotions since their wedding day. Being a caregiver to a CFer is, every bit the wild ride that CFers themselves face. Although I have never met them personally, I am so proud of how they are handling themselves. Danielle was extremely gracious on the phone and I could tell just from our brief conversation that she is a woman of substance.

Danielle has been staying downtown while Bill recovers at USC Medical Center. It can't be easy to be on the complete opposite coast from your family, friends, and extended support group. Please join me in keeping them in prayer as they provide encouragement and support to each other. Pray especially for Danielle that she will have stamina and strength to help Bill get settled once they return to Massachusetts.

They hope to be leaving the hospital soon and heading back home to a fresh start as a married couple. All the best to Mr. and Mrs. Bill Senopoulos! I wish them both all the blessings life has to offer.

Ah, another fun date night in Escondido! This time we thought it would be fun to invite another couple with us to enjoy the Saturday Backyard. We decided to rendezvous in the church parking lot at 6:00, then go out to dinner before the performance.

Dinner at Coco's proved to be a good move. It was great to sit down together and get to know our new friends in a casual, neutral territory. Brad and I are so glad we met Jeremy and Allison. We enjoyed hearing their stories of what it was like during their courtship, how Jeremy proposed, and how things are going for them now.

At the concert we heard Katie Christine. I had a chance to speak with her after the performance. She is a genuinely sweet gal. She told me she has only been playing guitar for two years. I was impressed at how gutsy she was to get in front of a group, sing and play her original work with only a little bit of experience behind her. Although she's a fledgling musician and vocalist, her ambition is admirable. Her voice carried well throughout the amphitheater, and despite losing the power to her guitar, she did a great job of blending the vocalizations while strumming an accompaniment. Also lending some rhythm and texture was the use of congas, played by her friend. The tunes she has available for download on her MySpace page are quite catchy. They're a good quality recording and worth a listen.


It never ceases to amaze me how energized I feel after spending time in the company of other believers who make God an active, living part of their relationship. A marriage built on Christ is one with the surest foundation. I only wish more young people would understand that. There's so much needless drama and heartache in the world, especially when it comes to dating and relationships. God has really put it on my heart to do what I can to encourage young women to trust God with their love lives, and seek His best, even if that means no dating for a period of time.

Brad and I have such a blessed relationship. It's fun to have entered into this new season of life together. The transition to a new church and the forging of new friendships is going as well as can be expected. I'm praying that God will continue to guide us in His paths as He shows us where we fit best in our new church family.

I managed to get a fairly decent amount of sleep last night. We stayed up way too late, but amazingly I'm not tired today. I think I'm getting better at pacing myself and spending my energy wisely, being sure to keep some of it in reserve.

Tonight my husband and I are heading up to Escondido to share a meal with friends. We'll also be attending tonight's show at "Saturday Backyard." Katie Christine is the featured artist this evening (that's her in the photo.) If you haven't checked her out yet be sure to do so. She's got some great tunes available on her MySpace page.

If you live in the San Diego North County area and would like to spend a relaxing evening listening to a local musician, here's your chance. The Saturday Backyard Concert Series is going on every Saturday evening through the end of September. It's a great venue, very intimate. The address is 777 Felicita, Escondido. The show is free, but I encourage you to consider supporting these talented local musicians by purchasing their CDs.

Need directions? Here's a map!.

Hope to see you there!

Although I didn't need it spelled out for me, my adoring husband had this little love note waiting for me when I came downstairs the other night.


How sweet is that? My husband is so wonderful to me. He demonstrates his love in creative and unexpected ways. He knows just what it takes to make me feel like most valued and treasured woman in the world. He is truly a man of honor, and someone whom I respect in the utmost. I'm ever thankful that God brought him into my life.

I think I need to get out more. Now that my energy level has picked up dramatically, I'm filling my time with things that border on embarrassing. For example, I look forward to a good game of hide-and-seek with Gimli. I'm content to spend a good 20 minutes laying on the floor nose-to-nose with him in a "Frasier vs. Eddie" style staring contest.


Something tells me that Gimli might be hiding behind that basket.

Silly bunny. Maybe his old pappy never told him "never sneeze when you're hiding, and never smile when you lie." Or was that "smile when you're sneezing and lie about where you hide"...










This (under the aquarium cabinet) would have been a great spot if he hadn't made so much noise pushing those boxes aside. Shhhhh...I don't think he knows I found him...







I'm so glad to be feeling better, that's for sure. I've reached a personal best in the number of mornings that I have been awake at the same time as Brad. This morning I was even up before he was. Too bad the only reason that happened was because I got a charlie horse, but hey, it got me up. I put my effusive energy to work and I cleaned the car. I bought some of that "car wash in a can" stuff awhile back, and I'd been itching to try it out. Quite impressive. Next time I think I'll have Brad help me though, because elbow grease is one thing in short supply for me.

After taking care of the car, I folded a load of laundry. By that time Brad was awake and dressed, so I invited him to take a walk with me. Together we moved at a fast clip toward the local drug store for some sunscreen. I couldn't believe they make SPF 60 now! Wow. I didn't think I'd ever see that outside of a Dutch Bakery, let alone in a largely Latino part of town.

Now we're back in the house and my tummy is crying for some food. I think Eggos are in order this morning. And perhaps a little parsley for Gimli.

Brad and I had a great time celebrating our anniversary. We took advantage of the fact that most of the San Diego population was out at the beach for the holiday. The mall parking lot was emptier than I had ever seen it, so we were able to park nice and close to the movie theatre for a change. Since we were in a wedding frame of mind, we bought tickets for "License to Wed." It was very entertaining, but it was disappointing in how certain pre-marital activities (i.e. shacking up) were glossed over. There was the redeeming fact that it mentioned that the divorce rate is higher for couples who live together before marriage. At least they got that right.

But I don't want to dwell on the negative. I want to think about how much fun we had. We spent the morning and early afternoon just lallygagging around the house. I don't think I had ever stayed in my pajamas that long outside of being in the hospital. It was SO relaxing. Brad spent some time online playing backgammon, and I did a bit of exercising.



We went to the movie around 5, and decided to eat dinner afterward. Red Lobster. Mmmmmmm. I think I packed away about 6 of those cheddar bay biscuits. At the end of the meal there was still one left in the little basket, and Brad commented on how unlike me it was to leave food. So I picked up a napkin, grabbed the thing and put it in my purse. It made for a nice midnight snack.
On the way back to the car we walked passed a lovely flower bed. I didn't want our anniversary to go undocumented, so we took pictures of each other with Brad's cell phone. They aren't the sharpest, but I'm really glad we have them. I like having something to look back on with fondness. I still enjoy looking at our wedding album. That was a beautiful day. We've added so many beautiful memories to it over the last 4 years. Lord willing, we'll celebrate many, many more anniversaries together.

It's hard to believe that four years ago we were rehearsing for our wedding ceremony! Sometimes it seems like only yesterday that we were engaged; Other times I feel like I've known Brad my entire life. Either way, our relationship makes me grin from ear to ear whenever I think about every part of it. There's no doubt in my mind that God hand-picked Brad to be my husband.

God blesses us in so many ways when we put our life in His hands. Being able to share my life and my faith with someone who loves me is wonderful. Brad and I have shared a lot of ups and downs and in betweens. We have pretty much run the gamut of what the wedding vows encapsulate. Honestly, I don't know how some couples can experience a meaningful and fulfilling relationship without Christ in their lives. I can think of no more effective "glue" to hold a marriage together than the strength that comes from the Holy Spirit.

I look forward to many, many more years spent at Brad's side, loving and honoring him as his wife. God holds us in His mighty hands. I have tremendous peace knowing that we are in His grip.

We finally got out of the house to spend time somewhere other than at a doctor appointment! Our friend David invited us up to Escondido to check out the "Saturday Backyard" concert series he put together at his church, Community Reformed Church. When Brad and I were dating we attended several concerts at the Redlands Bowl. In fact, Brad proposed to me one night before a performance of The Barber of Seville. Ever since, outdoor concerts (and concerts in general) are something of a very fond memory for us.

When David invited us, we couldn't say no. We packed up a little tote bag with some bottled water, Rice Krispy bars and grapes, grabbed the plaid picnic blanket, our sunglasses and hopped in the car. We arrived early to say hello to David, then headed over to Subway to share a pastrami sandwich for dinner. Mmmmm. (Not every Subway has the pastrami, so it's extra special when we find one that does.)

After dinner we went to the church to stake out our places in the outdoor amphitheater. It was much nicer than I expected. I had envisioned it as something from summer camp--creaky wooden benches in semi-circles around a charred fire pit. This place was nicely done up with white Christmas lights lining the awning over the stage area. Two high-backed barstools stood centered on a round rug where the musicians would position themselves. As the sun set and the moon rose, the Christmas lights proved a wonderful touch. David said that there was a problem with some of the lights, but honestly, I don't think anyone noticed. The mics were a little hot too, but that was a minimal issue. Overall the sound was well balanced and carried well.

David has drummed up some local talent to showcase their stuff throughout the summer. The venue is delightfully small and intimate, almost like a coffee house setting. The only thing I found disappointing was that more people weren't in attendance. I sincerely hope that by the end of the summer the size of the audience at least triples.

Here's what David has to say about "Saturday Backyard" on his MySpace page about how it all came to be:

Sometime during my first visits to CRC, I noticed the quaint outdoor amphitheater. As the weeks went by, I had conversations with CRC Senior Pastor John Bales about it. With his blessing, I began talking with local musicians about an idea for a summer concert series. It turns out, they've been searching for just such an environment to perform in.

Brad and I enjoyed the evening together on Saturday night. It was fun to be there to lend our support to David and the artists he invited to play. Since Brad and I are very enthusiastic music hobbyists (well, Brad's a music professional and I'm the hobbyist around our house) we often find ourselves attending things like this. It's always interesting to hear and independent artist and wonder about who their influences are, what their songs are about, and what they might get to do with their music in the future. When the musicians are people we know personally, it's even more exciting to watch their talent develop and have their goals materialize. The guys playing for the July 1 "Saturday Backyard" were Caleb Jude Green, and Ivan Cheong.

Caleb is from Encinitas has some of his music available for download and available for purchase on his MySpace page

Ivan Cheong is an 80's enthusiast and likes to sprinkle his original work with sampling of cover tunes. Saturday night he managed to include a short riff from the "Growing Pains" theme in one of his songs, as well as a Radiohead cover. What's on the horizon for the rest of the "Saturday Backyard" series? The schedule is below along with links and photos of the artists. If you're looking for a relaxing, no fuss event to occupy your time on a Saturday night, please consider stopping by Community Reformed Church in Escondido. It's such a laid back atmosphere and well worth the price of admission (which, by the way is FREE!) Brad and I will be sure to include "Saturday Backyard" in our future summer dates.

Oh, and by the way, it took me upwards of two hours just to construct this blog post with all the photos and links and stuff. You can imagine how much more effort David put into arranging to have these musicians perform, getting some publicity going about "Saturday Backyard," setting up the lights, the sound, and so forth. And let's not forget the musicians themselves, taking time to rehearse, go through sound checks, and ultimately put their best foot forward for a new audience and potential fans. I hope you'll find time to reward their hard work by coming to check them out at Community Reformed Church, 777 Felicita Avenue, Escondido, CA. If you find a sound you like, please consider supporting them b y purchasing their available audio tracks and CDs.

I hope to see you at the shows!



July 7: Jamie K. Crawford



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July 14: Katie Christine












July 21: Rheanna Downey (opener) and Gayle Skidmore and the Eskimo Friends









August 4: Brenda Xu










August 11: Lindsey Yung with special guest, Dave's Son












August 18: Josh Damigo of Josh Damigo and the Pickpockets








August 25: Ian Gallagher













September 1: Free Air






September 8: Len Guarzon & Friends













September 15: Matthew Blake



September 22: Jordan Reimer









September 29: The Larson Sisters with Chris Clark

Labels: escondido, free concerts, local, musicians, San Diego talent