Breathing Deeply: My Life With Cystic Fibrosis

As some of you know, this has been a very rough year for me with my health. I've been on disability from work since Thanksgiving. I was due to return in May, but was hospitalized again. In the last calendar year I've been admitted about 7 times.

Because of this, my doc has kept me on a VERY tight leash. I've been having spirometry weekly, and clinic appointments every 3 weeks. At my last appointment I was told that they don't have anymore tricks up their sleeves for me. They had prescribed everything possible, and I was doing all that I needed to. All we could do was wait and see if all the aggressive treatments were going to be effective.

It looks like we're on the right track! My FEV1 went from 2.08 to 2.22. I gained 3 pounds. They are giving me a month to see if I can continue to improve. They would like to give me another round of antibiotics to try to get me all the way up to 2.7 or 2.8L, but they were satisfied enough with my current progress to let me wait.

Like I said, there's still a lot I have to do to be in stable enough condition to go back to work. I have some de-sat issues that we're looking into, and my heart rate is still crazy.

Nonetheless, it was a very encouraging appointment. Brad and I were all smiles, and celebrated with a trip to our favorite Chinese restaurant. My next appointment is in a month. I hope to report even more progress then.

I have my "google alerts" set to let me know whenever CF is in the news. Today's google alert headline said "Medford Newlywed Received Lung Transplant." As I read it, my heart started pounding and lodged itself in my throat.

"Is that Bill?!" I thought to myself.

I read the article and learned that the CF patient in the article was in fact, Bill Senopolous. I had received an email just weeks ago from his wife, Danielle, as a comment on one of my articles about CF and bowel obstruction. She told me about their situation and asked for encouragement and support.

The newlyweds had only been married a day when Bill was hospitalized for extreme complications with CF. He and Danielle weren't even sure if he was going to be able to survive to have the life-prolonging transplant. If a donor did become available, they would have to endure a cross-country plane trip out to USC Medical Center.

I am excited to hear their news, and I hope that many of you will continue to pray for Bill's health and recovery process. Please pray also that Danielle will be able to withstand the stress and emotions that must be going on right now.

I wish them both a happy and fulfilling marriage. I'm glad they have a chance to start afresh.

A month ago we adopted "Thumper." That name seemed a little too unoriginal for us, so we immediately started calling him Gimli instead. At first Gimli was very cage protective and would growl a bit if you tried to reach into his cage. He's sort of stubborn like me, and refuses to do things unless it was his idea in the first place. I've learned that if I just leave his cage door open when it's time to play, he'll come out all by himself.

Play time always starts the same way. Gimli circles the area in a very regimented way. He sniffs at everything, being sure to double back to his cage every now and then. Since rabbits are prey, they are always on the lookout for the safest and quickest way back to their home should trouble arise.

Once Gimli is assured that the loft is a safe area, he skips around merrily. He approaches the doors of all the rooms he's not allowed into, just in case someone forgot to close them. He's already learned what the word "NO!" means, and if he starts to misbehave (chewing something he shouldn't, for example) all I have to do is clap and say "No!" Sometimes he gives me a little attitude about it in the form of flicking his back legs at me. I guess that's the bunny equivalent of talking back.


I've learned by watching him for hours what his personality is like. I can tell which grunts mean "I'm just teasing you" and which ones mean "back off, human." I've also learned when he's running just for the sake of running, and when he wants to engage me in a game of chase. He likes to play hide-and-seek too, but he's not very good at it. Every time he finds a good hiding place he thumps to let me know where he is. His two favorite places are under the recliner (see pic below,) and in the aquarium cabinet.

For the most part he's very well behaved. His favorite toys are towels to bunch up and a set of baby teething rings. Since I've gotten the teething rings for him he doesn't nip at me quite so much.

After dinner I usually pet Gimli's face while holding him on my lap. He absolutely loves this. His eyes almost close and he gets very still. His body language tells me he's relaxed. When I stop petting his furry little cheeks, he always returns the favor by grooming my hands and arms. Sometimes he'll climb up my chest and lick my cheeks and nose with his warm little tongue. It's very ticklish and oh so cute!

One of the things I thought about that's an advantage to having a bunny instead of a toddler is that I never have to say "I wish he could just stay this size forever!" My bunny will always be this same size, this same softness and the same cuteness. He may flick his feet at me in disapproval, thump at me in anger or growl at me when he's mad, but he'll never say "I hate you, Mom." Maybe I'm over romanticizing the situation, but I am really happy to have this furry little critter around the house.

The following are some questions that were posted in an online forum about CF. My answers and some additional thoughts are included here.



1. At what age did your parents hand over all treatments to you. When did they make your meds and treatments your full responsibility?


By the time I was 10, I was in charge of bringing my enzymes and vitamins with me to the table at mealtimes. It's hard for me to remember my mom or dad ever setting up my meds or anything and then handing them to me. Most often I was just told to "go do your breather." It was like being told "Go clean your room."


2. At what age did they stop going into the doctors office with you?


When I was old enough to drive, Mom went with me to the doc less and less. Most of the time I invited her along, so I'd have someone to talk to while I waited! Also, doctor appointments were sort of a mom/daughter bonding thing. After the appointment (usually late in the afternoon) we'd stop for dinner somewhere.

3. When do you feel your parents made all aspects of CF (meds, calorie intake, setting up doc appointments, etc) your full responsibility?

Like I said before, it was my responsibility from as young as 10. As far as calories go, I've always been a foody, so I took charge of preparing healthy snacks and big school lunches around 5th grade. Basically I learned to cook so that mom would be able to get out of the kitchen now and then! Making appointments was, for the most part, pretty easy to do. The clinic would say when they wanted to see me next (1 mo, 3 mo, 6 mo, etc.) so I'd just make the next appt on my way out the clinic door. In college I started having more problems with my health, so it was up to me to call the doc. Usually after I made an appointment, I'd call mom and dad to fill them in on what was going on,


I'm extremely compliant now, but I was a total butt-head about my meds for awhile in high school--especially the enzymes and vitamins. I'd stash them in the houseplants or throw them away at school. My parents knew this. They weren't dumb. (But as a teen I thought they were!) Most teens rebel in some way. I was too much of a goody two-shoes to be promiscuous or have a smart mouth to my folks, so I rebelled quietly. By the time I graduated from high school, I had my act together and stopped the bad behavior. There was no cathartic moment that made this happen. I just grew up.

If some of you are parents who are having a tough time getting teens to take responsibility is this: choose your battles, and remember that no matter how "adult" your kid thinks s/he is, your job and responsibility is to be a PARENT--not a friend, not a buddy, not a confidant--a PARENT.

My mom and dad let me learn from my own mistakes, but stepped in at the exact moment when my stupidity would have gotten me in more trouble than I could handle. I was given the go-ahead to walk a tightrope of my own life, but when I was under their care (up to age 18) their way of instructing me and helping me learn my limitations served as a great safety net. Had they not been such awesome, attentive parents, I wouldn't be the responsible, well-adjust adult I am today. And I don't just mean in terms of CF.

Dear Future Husband is autobiographical in nature. From the time I was 14 I started writing letters addressed to "Dear Future Husband." I wrote them for 8 years. When Brad and I got engaged, I gave him the entire collection as a gift. It was amazing to see how God had answered the prayers I had been praying from my earliest teen years.

The book contains the letters verbatim, as well as narrative reflections on how they play a bigger role in our marriage. Pre-sales of Dear Future Husband will most likely be available on this blog or the publisher's website by the end of July. The official release date is scheduled for Labor Day Weekend, 2007.

Dear Future Husband will be an eBook. You purchase it through a website, then a CD with a PDF document is mailed to you.

Here's the "blurb" about the book as it appears on the publisher's website:

Chronicles of one young woman's prayerful commitment to finding a God-fearing husband, and the lessons she brought with her into marriage. It presents a compelling testimony of faith, hope, love and a greater understanding of God's sense of timing. Dear Future Husband speaks to the hearts of singles and couples alike, and reinforces the Biblical roles of men and women.




Visit Shulamite Publishing's website

Also, don't Miss From Hoochie to Holy by Joyce Leggette

A hard hitting book which boldly and honestly deals with how to bring the Lord into the area of our sexual wounds and sins for healing. Women who are ready to get off of their backs and onto their knees to get their deepest desires met are the very women who will benefit most from this book. Birthed in a radio series and expanded, and written by the host of the original radio program, this book is for overcomers.

Note: This book is being expanded to a multi-volume series of books written by multiple writers including the host and the guest of the original radio program. More volumes are in the works.

While browsing the greeting card aisle, searching for a light-hearted note of congratulations for my recently wed friend, I laughed out loud at one sentiment in particular. I don’t remember the exact wording but the front of the card said something to the effect of how nice it is now people quit asking about the impending wedding date. The inside read “So when are you going to have a baby?”

Assuming that a couple has committed themselves to abstinence prior to their nuptials, it seems only natural that the next step in a Christian marriage is to “go forth and multiply.” Whether driven by pressure from anxious in-laws, friends or well meaning church family members, the Biblical concept of “leaving and cleaving” (For this reason a man will leave his father and mother and be united to his wife, and they will become one flesh. Gen. 2:24, NIV) has somehow morphed into “leaving, cleaving, and conceiving.”

We tend to bristle ever so slightly when we hear the phrase “start a family,” when those who utter it really mean, “start having babies.” Our personal preference is to say that couples are expanding the family, not starting one. It is our understanding that a family begins at the altar on the wedding day.

As Walter Trobisch points out in his book I Married You, the commonly held belief that marriage is for procreation, is a slightly off target premise. The book is about his experience conducting a lecture series designed to facilitate a more appropriately complete view of sex in marriage. Originally published in 1971, his target audience, not to mention the small Christian community to which he lectured in Africa, was initially confounded by his ideas. One of the most profound statements in the book occurs when he challenges Christians to think about the “full stop” that takes place immediately after the wedding.

The “full stop” as Trobisch calls it, is his most compelling argument demonstrating that a marriage without children is still a blessed one in God’s eyes. The full stop concept is based on Genesis 2:24. Man and wife become one flesh. This verse says nothing about bearing children or populating the earth.

Interestingly enough, this is hardly a new interpretation of the purpose of the union between man and wife as one flesh. When God declared that it was not suitable for man to be alone (Genesis 2:18), the reason was not because Adam had no means to procreate without a partner. Eve was created as a helper, and a source of sexual fulfillment and enjoyment as man.

Together Adam and Eve were naked and felt no shame. (Gen. 2:25). As only a married person can attest, there is nothing as mysterious and wonderful about being unabashedly ashamed to be naked with a spouse who loves unconditionally. There truly is no shame there. A healthy marriage becomes more deeply fulfilling as husband and wife discover their sexual appetites for one another, and partake of such willingly and regularly. In doing so, Christian couples are wisely and wonderfully heeding Solomon’s words “May your fountain be blessed, and may you rejoice in the wife of your youth. A loving doe, a graceful deer— may her breasts satisfy you always, may you ever be captivated by her love.” Proverbs 5:18-19 (NIV).

Even before my husband and I were married, we discussed frequently and seriously, what it would mean for us to be a family, and whether or not we would be parents. When we first expressed our thoughts on the matter with friends and family, we got a lot of smirks and comments like “you never know…birth control isn’t fail safe,” or “you say that now, but you’ll want kids later.” God has made it abundantly clear to us that we are not to be parents.

My husband and I have wrestled mightily with our decision regarding children. The decision has been in the works for us as a couple for nearly 5 years. For me personally, the benefits and consequences have been weighing on my mind for 12 years. I have cystic fibrosis, an incurable genetic condition that wreaks havoc on nearly every body system.

Pregnancy and parenting are not a reasonable or responsible choice for us. We have willingly sacrificed part of what our bodies and marriage were designed to do, in order that we not harm an innocent child.

Getting pregnant was never a question in my mind. Women with cystic fibrosis can and do could get pregnant. Some actually do quite well with it. However, simply getting pregnant was not (and is not) the point for us. The point is that being pregnant is only the beginning. 9 months out of an 18+ year commitment.

I do not have the capability or wherewithal to parent a child. It's not about my overall health; it's not about whether it's "only natural" to want to be a parent. It's not about me at all. It's about what a child would not receive from me or my spouse because of the constant demands of cystic fibrosis in our life. Our physical, emotional, financial and spiritual resources are already tapped.

I feel like a woman when my husband tells me he loves me. I feel like a woman when I make him happy just by making a lunch for him to take to work. I feel like a woman when I look at my beautiful wedding band and engagement ring. I don't need my uterus to stretch in order to feel like a woman. I am a woman because of how God wired my emotions and my ability to fulfill my husband.

We do not align ourselves with the “childless by choice” camp. The word childless seems to suggest that we are lacking something, the same way that the words homeless or penniless do. We are not on the bottom rung on the ladder of blessed marriages. On the contrary; God blesses us tremendously as a family of two. We find great joy in being a special part of the lives of our friends’ children. As members of the body of Christ, we have every bit the same responsibility to bring up children in the fear and admonishing of the Lord—even if those children are not biologically related to us.

Our commitment to God and to our vows as husband and wife take precedence in our life as a family of two. Occasionally we wonder what it would have been like to be parents, but we know that God’s plan for us does not include children. It is a calling that we do not share with many other couples our age, but that is not the point. What matters is that we are obedient to God and glorify Him. We can do that most effectively as a family of two.

Tonight's one of those nights where I wish I could just fall asleep and forget everything about CF, missing work, being exhausted, etc. My mind is "working overtime" as my dad would say. The lyrics of Patty Lovelace's song "I Try to Think About Elvis" pretty much sum it up. My brain jumps from topic to topic, but no matter where it takes me, I keep coming back to the fact that I'm stuck at home because of stupid CF. I'm not at work because of stupid CF.



I try to think about Elvis, Memphis, Oprah in the afternoon;
I try to think about palm trees fig leaves the creature of the black lagoon;
I try to think about high heels, and good deals anything to get me through...

I just can't concentrate you're all I think about these days

I try to contemplate the cosmos, what goes round and round the sky at night;
I try to think about champagne, freight trains slowly rolling out of sight;
I try to focus on the headlines, street crimes, everytime I think I might.

I just can't concentrate you're all I think about these days

My mind wanders where it will when it settles right on you.
I forget what I should say I forget what I should do;

I try to think about Shakespeare, leap year, the Beatles or the Rolling Stones;
I try to think about hairdo's, tattoos, Sushi bars and saxophones;
I try to think about the talk shows, new clothes

But I guess I should have known;
I just can't concentrate you're all I think about these days;
You're all I think about these days

An Open Letter to My CF Clinic Dietitian Regarding Supplements

Dear Dietitian/Nutritionist,

As you well know, managing cystic fibrosis requires a great deal of effort on the parts of patients and the team clinic. Cystic fibrosis is so multi-faceted and complicated that not all treatment plans work the same way for each patient. You know this. This is nothing new to you, as you see a great many patients in the course of your workweek.

It seems that there is a lack of information or options to offer me. No matter what my food diary looks like, how much insulin I take, or how many pancreatic enzymes I ingest, your recommendations are always the same. Your first line of defense is to offer me Scandi, Boost, or Ensure. CFers have been given these non-palatable options for more than a decade, and I wonder, why aren’t dieticians like you getting the hint that we completely disdain these products?

I know that weight gain and proper nutrition is of utmost importance for me. Why else would I go to the trouble of observing my stools, keeping track of my caloric intake, and refilling my enzyme prescriptions? The problems I have with weight gain are probably not for a lack of trying, but for a lack of options.

Please do not offer me Scandi, Boost, or Ensure. Although these products may have a nutritional content label that satisfies all your requirements for vitamins, minerals, carbs, and calories, they fail to meet with my approval. They taste awful. Truly, undeniably awful.

The best thing you can do to help me and other CFers is to do some research as to what people actually eat. Ask around. Listen to your patients who are gaining weight and see what is working for them, but don’t just assume there’s one good answer for all of us.

Please, for all of our sakes, try to remember that supplements are not the answer. I will no longer take you seriously as a member of the medical community if you continue to foist such products on me.

There was a little girl named Lauren who wanted to be a veterinarian. Even when she was in first grade and people asked her what she "wanted to be when she grew up," she always had an answer. She rarely met an animal she didn't like, or that didn't like her. She was the first one to try to catch a grasshopper, the most likely to pick up a lizard from the flower beds, and the bravest one when it come to the creepy crawly creatures like slugs and worms.


Her daddy introduced her to the members of the animal kingdom even before she could call them by name. Whenever he found a harmless little snake out on the dairy, he'd catch it and bring it into the house to show her.





Living on a dairy meant she learned a lot about animals. Sometimes she helped Daddy feed the calves. Other times she just liked playing in the front yard with her kitties, "Giggles" and "Yo-Yo."



When the little girl was a bit older, Daddy showed her how to take care of bigger animals. He taught her and her sister how to ride "Buster" the horse. At first it was scary being up so high, but "Buster" was so calm and gentle that she didn't have to be afraid. Before long, she could ride him all by herself without Daddy pulling the lead rope.

Most of Lauren's friends had pets like dogs, cats or even turtles and hamsters. Lauren's family had a few dogs over the years, but mostly they were just strays that showed up on the dairy. One of her favorites was "Fred," who had very tiny, short legs. He was really good at jumping though! Fred mostly stayed outside, but sometimes when Mom wasn't home, Dad would let Fred come in the house for a little while.

One summer, Lauren's Daddy set up a big pen next to the house where they could keep lots of different animals. They got 5 ducks, 2 Chinese Silky hens, a billy goat and a nanny goat. The billy goat was sort of mean and liked to chase after people who tried to pet him. The nanny goat was very little--so little that she still needed a bottle every day.

Since Lauren wanted to be a veterinarian, feeding the baby goat was her job. She got up early in the mornings to microwave some milk, then climb into the pen to give it to the nanny goat. Nanny goat grew up fast, and soon she was going to have babies of her own!

Lauren loved taking care of her animals. She would sit in the pen with them even when it was raining, just to make sure they weren't scared. When Daddy was out of town, she helped feed the horses.

She even had a little rabbit for awhile named "Jet." His favorite thing to do was wiggle out of his hutch and dart back and forth across the lawn. One night he got loose and burrowed away forever.

Lauren would have made a fantastic veterinarian. She even started college planning to attend vet school at UC Davis after she earned her bachelor's degree. Unfortunately, Lauren started having more problems with cystic fibrosis as she got older. Her allergies became more of a problem, and being around animals was making her so sick that she had to think of something else to do "when she grew up."

Because she loved science, Lauren stayed in school and became an environmental scientist. This way she's still involved in taking care of ecosystems and animals, even if it's indirectly. She would love to have lots of pets like she used to, but she can't. Instead, she has an aquarium of tropical fish, and a house rabbit.

The moral of the story is this:

There is more than one way to keep doing the things you love, even if you have limitations. You just have to look for an alternative route.

I say ... and you think ... ?

1. Savage :: Garden
2. Warrior :: Basketball
3. Daisy :: Chain
4. Schedule :: eat, sleep, poop
5.Rock, paper, scissors :: wouldn't flipping a coin be simpler?
6. Medical :: Insurance is a necessity
7. Jade :: "I'm the one that jaded you" Aerosmith
8. Elevator :: YIKES!
9. Drain :: My enthusiasm seems to be circling it.
10. Goldfish:: meh. Tetras are way better.