The Best Part of Waking Up

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Morning is my least favorite time of day. I’m not much of an early bird to begin with, and cystic fibrosis has not increased my love for mornings.  I struggle the most with my health first thing. After lying in bed for eight or nine hours, mucus pools in my lungs and I start out each day with a series of breathing treatments and respiratory therapy to help me clear my airways. I take an inhaler to dilate the airways and inhale a saline solution to help mobilize the mucus. I blow into a device that vibrates and shakes my lungs in an attempt to dislodge the congestion from the airways and move it forward so I can cough it out. I inhale a medication designed to help thin the mucus and take a steroid inhaler to control the asthma that I have in addition to the cystic fibrosis. Sometimes I jump on a small trampoline to further loosen the congestion.

Even after doing all these treatments, I can expect to continue coughing on and off for a few hours each morning. First morning coughing is often almost violent in nature and can lead to gagging, vomiting and bad headaches. I sometimes injure muscles in my back or chest while coughing.  I don’t really feel human until I’ve been up for several hours, completed all my treatments, cleared my lungs as best as I can, and had a few cups of very dark, very strong coffee. (No Folgers in this girl’s cup!) Yeah, not a morning person.

I was scrolling through my photos the other day and I started to notice something. I have a lot of pictures taken in the morning. Most of them show a messy-haired, animated little boy doing what he does best–lighting up my life. Lucas is not a morning person either, not in the strictest sense at least. He’d prefer to stay up late and sleep late. But most days he wakes up ready and raring to go, full of joy, enthusiasm and spunk from the minute he bounces out of bed.

Today I’m feeling thankful and encouraged by the gift that is my son and grateful for the joy that Lucas has brought into my mornings. I may feel crummy first thing. I may cough and struggle, but one look at his sweet, disheveled, pajama’d self and I can’t help but feel happy. He’s definitely the best part of waking up!

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Good morning, Sunshine!

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One tissue for you, ten tissues for me.

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This makes it a lot easier to breathe, right Mommy?

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It’s never too early for a dance party…

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…or for dinosaurs and songs.

Early morning stories and snuggles.

Early morning stories and snuggles.

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The world’s greatest pajamas.

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We’ll take care of that hair after breakfast. Maybe.

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My morning joy.

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Stability

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I had my three month checkup at the CF clinic last week and am happy to report that things went well!  My doctor was pleased with my weight gain and happy that I have been able to work up to running two miles. My lungs sounded clear, the oxygen saturation in my blood was normal at 98%, the bacteria in my lungs are susceptible to a variety of oral antibiotics (meaning there are several options for treatment if I get sick), my blood sugar was normal (no CF-related diabetes!) and my FEV1 was up two points to 49% of predicted. I’ve worked hard not to get too caught up in the FEV1 score because it can be a fickle fiend.  But, honestly, I was thrilled to see it go up.  It felt like a pat on the back after several months of working hard on my weight and exercise goals.

Lucas and Jaime both accompanied me to the doctor. Lucas has traditionally been very shy and quiet during my appointments but he was neither of those this visit. He kept loudly proclaiming his desire to stand on the white paper on the exam table.  He said over and over, “The doctor look in MY mouth now.  The doctor look in MY ears!”  I have to hand it to his pediatrician.  She is wonderful, apparently so wonderful that Lucas wants to be examined.  Thankfully the doctor seemed charmed. But I might have to find a babysitter for him next time I go.

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Look at that face…he knows he’s a little rascal!

Overall my doctor said that my health is very stable. Stability is a wonderful thing when you have a progressive disease.  Of course I would love to see a big improvement.  I would love to see my FEV1 jump 10 points.  Occasionally CFers see jumps like that, but that’s usually if there has been a dip due to a serious infection. Big gains can also happen if someone has not been taking good care of themselves and they begin to make healthier choices, like being faithful with breathing treatments, airway clearance, and exercise. Some patients have seen significant improvements in lung function by taking a medication called Kalydeco which treats CF at the cellular level.  However, it is only effective for those who have a gating mutation, and neither of my CF mutations are, making this drug ineffective for me.

Thankfully I haven’t been acutely ill for a long time.  My last round of oral antibiotics was seven months ago.  I am not perfect with my treatments but I do make them a priority.  I’m active with Lucas and exercising three days a week.  I eat healthy foods to boost my immune system and to combat inflammation and infection.  I try hard to get enough sleep.  I’m hanging out around 50% lung function with those healthy habits already in place. Without a miracle or a medical breakthrough, I’m unlikely to see a big jump, but I’m stable.  I’ve adjusted to life at this level with these challenges.

Stability means that if new treatments become available, I will hopefully be in a position to benefit from them.  There is so much research going on right now involving treatments and medications that combat the basic defect of CF.  My doctor is optimistic about what might become available in the next ten years.  I hope and pray that there will be a breakthrough in my lifetime.

For now, it’s about keeping on!  I’m thankful for a good doctor’s report and for those two points on my FEV1.  I’m thankful for stability in my health.  I’m thankful that God gives me the strength to live and thrive in spite of my challenges.  I’m thankful for a rascally three year old to make me laugh through my appointment.  And I’m thankful for the bright hope that fills my heart.

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Operation Lace Up Update

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I completed one week of Operation Lace Up and am here to report.  Things went better than I expected!  I knew that running was going to be very hard.  And it was, but it was doable.

The Couch to 5K I’m modifying specified a minute and a half of walking followed by one minute of jogging.  I set my treadmill to 4.2 mph which works out to be a 14-minute mile pace.  I kept it the same for both the running and the walking portions, and completed 21 minutes which worked out to be eight 1-minute runs and nine 1.5-minute walks (a total of 1.5 miles).

Before each workout I did a breathing treatment and airway clearance to make sure that my lungs were as clear as possible.  It’s very frustrating to have workouts interrupted constantly by fits of coughing.  My muscles didn’t have any problem with the walking and jogging.  I must have a decent base level of fitness (thank you, Lucas).  It was a challenge to breathe and I felt each and every breath I took.  I had to work hard to pull in as much air as I could and then push it back out.  It was a very deliberate.  When the airways are constricted due to inflammation, congestion, infection, or scarring, the air simply does not move in and out as easily as it should.  I’m thankful I don’t notice every breath I take during the normal activities of my day, but I sure did while exercising.  It was a challenge but I never felt that I had to stop or that I couldn’t finish.  That was very encouraging!

Usually when I work out on the treadmill I watch TV to pass the time.  However, because I had to watch the the clock so closely, I listened to music this week.  A really good, upbeat tune sure helped me push through.  Does anyone have specific songs that they like to listen to when they work out?  I’d love suggestions as I haven’t updated my music for years!

This week I am supposed to do a 2-minute walk followed by the 1.5-minute run.  It sounds manageable.  I’ve got to get my first workout done tonight so I’d better go lace up!

Improving Airway Clearance by Leaps and Bounds

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Airway clearance is a very important part of staying healthy when you have cystic fibrosis.  Because of the basic defect, CFers have thick mucus that can build up in the lungs.  I do respiratory therapy twice a day to combat this problem.

There are a few different methods of airway clearance.   One method is called P&PD, percussion and postural drainage.  With this method, the body is angled to help the lungs drain and the lungs are percussed with a cupped hand to loosen mucus so it can be coughed out.  I remember my mother doing this daily on my sister Sheri when we were young.  We called it thumping.  I also utilized this method during and after my CF health crisis in 2007, but it’s a bit tricky to perform on yourself.

A second type of airway clearance is to use an airway clearance vest.  I can’t knowledgeably report on this method because for various reasons, my doctor feels that other techniques are more effective so I don’t have one.  However, I understand that the vests use air compression to increase airflow in the lungs and loosen mucus which can then be coughed up.  One benefit of this method is that you don’t need someone to perform it on you like with the P&PD and you can do other things simultaneously like complete breathing treatments, read, or blog (who doesn’t love multitasking?).  Some patients do vest treatments for hours each day.

A third method is called PEP therapy.  PEP stands for positive expiratory pressure.  In this method, the patient breathes into a device which provides resistance and vibration.  The positive pressure generated by breathing through the resistance opens the airways and helps air to get beneath pockets of congestion and the vibration helps loosen the mucus so it can be moved to the larger airways where it can be coughed out.  This is the method I use most often.

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You might think that asking your husband to take a picture of you doing airway clearance is a simple request, but this photo shoot deteriorated rather quickly…

I do this twice a day after using a bronchodilator to open my airways and saline solution to lubricate them.

Recently, I have implemented a new technique for airway clearance…jumping!  I stumbled upon some articles that reported that jumping is an excellent way to loosen and clear congestion.  It has been researched mostly as a method for children because other types of airway clearance may be difficult or unsafe.  Plus, jumping is fun so kids like it.  Enjoyable airway clearance is not a bad idea for adults either.  I decided to try it and I am loving it!  We bought a little trampoline and put it in the basement.

imageI have been doing my normal breathing treatment followed by the PEP respiratory therapy and then jumping on the trampoline for about 15 minutes each morning.  I have been surprised at how much congestion I’ve been able to bring up.  It’s not uncommon for me to cough up as much or more than I do performing the PEP respiratory therapy.  If I need to cough hard, I just hop off and sit on the side.  It is great exercise, but because I’m not using it in that way, I don’t get frustrated if I need to step off for a moment.  I feel exhilarated and joyful when I jump.  Maybe that’s because it makes me feel like a kid again, or maybe it’s just adrenaline and endorphins, but either way, it sure beats lying in an awkward position and pounding on myself.  It may not be an official method of airway clearance, but it works great for me!