Waging War

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It’s time for a health update and this is not the one I thought I would be giving! I had a really great winter, getting only two viruses that I was able to recover from without excessive difficulty. I was so excited as the calendar flipped from March to April, and as we sailed through May I thought for sure I was in the clear. I was dreaming of reaching new heights and regaining some lung function this summer after not battling with a myriad of bugs all winter.

A few weeks ago, however, I started to notice increased shortness of breath. I was keeping up with all my normal activities, but suddenly exercise, yard work, chasing Lucas around, and other things of that nature became more difficult. My seasonal allergies are bad at this time of year so I assumed those allergies were irritating my asthma and I wasn’t too concerned. I headed to a routine pulmonary appointment the last week of May and was surprised when my breathing test revealed that my lung function had dropped from 38% to 34%.

I had no other signs of illness or infection, so my doctor put me on five days of steroids hoping that would reduce the apparent inflammation and get me back on track. I experienced a little reprieve while on the steroids but still wasn’t feeling right, so I contacted him again last week. He put me back on the steroids and added oral antibiotics to address any infection that might be locked up and hiding in my lungs. On Friday I went in for a check and was dismayed to see that my lung function, rather than rebounding, had dropped an additional four points to 30%.

Cystic fibrosis can be puzzling. Most of the time when my lung function drops, it’s because I’m sick and I know it. Usually it starts with a virus and moves to a CF-related secondary infection. My lungs fill with mucus, my airways swell, I struggle to breathe, and I can’t wait to get relief. But this time, I feel pretty decent. I do have the shortness of breath that I mentioned earlier and my lungs have been achy, but overall I have been feeling fine and handling all my regular activities. There was nothing obvious to account for this big drop and that makes it even more unnerving.

My doctor explained that although I wasn’t exhibiting any classic signs of infection, infection is still the number one cause of a drop in lung function. The fact that I wasn’t responding to steroids probably means that although my asthma is always a component of my struggles, it wasn’t the main player in this situation. My doctor ordered a chest x-ray to rule out anything else unexpected, but that came back clear. So we have circled back to the notion of an infection.  This one is hidden, yet waging war on my lungs all the same.

To quote Farmer Boggis, “Dang and blast!” Dang and blast and a lot of other emotions too. A kind of numbness settled in at first. I just couldn’t understand it. Next, frustration. Moments like this shatter any fleeting feeling of security I may dare to believe I have. Getting through the winter unscathed was such a victory–a victory I was reveling in and so grateful for. Yet here I am with my lung function lower than it has ever been before. After a bit the frustration moved aside and the grief set in–waves of sadness swelling up and washing over me as the fears gripped my heart. My lungs are functioning at only 30%. It’s so scary.

Times like this always bring emotional struggle. It’s never just a physical battle. It’s necessary to experience the disappointment, the frustration, and the sadness and face the fears. The emotions never fit into a neat little box. There is no scheduling myself 36 hours to get over it. Friday night was rough but Saturday I felt better. Sunday I woke up in the wee hours of the morning feeling heart-broken. But in the midst of the sadness and frustration I knew it was time to get to work. The tables need to be turned. It is time to wage war against this infection.

This battle has two fronts: the physical and the emotional. Waging war means doing everything in my power. Jaime and I started doing manual percussion on my chest in addition to my normal airway clearance. Monday afternoon I headed to the hospital to get a PICC line placed and I started an IV antibiotic on Tuesday morning. My buddy the treadmill and I have been spending time together each day as currently, brisk walking has been the only thing that makes me cough mucus out.

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Attempting to show this infection who’s boss!

To balance off the treadmill work, I’ve been resting more in the afternoons. These afternoon rests are made possible by the arrival of my sister Julie from Tennessee! She got here Wednesday and will be staying through Monday to help me with chores, play with Lucas, give me moral support, and make a bad situation a heck of a lot better. She’s helping me with the physical aspect of this war but also helping all of us get through it emotionally.

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Aunt Julie is an awesome playmate and Lucas is thanking her with hundreds of hugs and kisses.

Fighting on the emotional front means a few things for me. First of all, I am committed to continue on with as much of my life and daily routines as possible. The PICC line is so great that way. There are some restrictions, but nothing too limiting. I’ve been spending time in my garden. Nature feeds my soul. I’ve been picking Lucas up from school and running an errand with him here and there.

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Lucas, holding the door for his class at pick up!

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A quick stop for some groceries and an orange balloon.

We’ve been keeping up with his school work.

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A special secret school project to thank his teacher.

I’ve continued my normal work schedule.

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Tutoring with my PICC.

I may have to cut back on some of these activities depending on how the next weeks play out, but as long as I have the strength, I want to continue on.

Most importantly, I’m trying to keep my eyes off my circumstances and on my Creator. He is the one who calms my fears and speaks peace and comfort to my heart. While I was on the treadmill the other day, a song came on that I haven’t heard for quite some time. The words were fitting. They go like this:

I will lift my eyes to the Maker
of the mountains I can’t climb
I will lift my eyes to the Calmer
of the oceans raging wild
I will lift my eyes to the Healer
of the hurt I hold inside
I will lift my eyes, lift my eyes to You

From “I Will Lift My Eyes” by Bebo Norman

These troubling circumstances are a lot to handle. These mountains are too high for me and these oceans too rough. The hurt and fear are at times more than I can bear. But none of it is too much for God, and I know my life is safe in His hands. He holds me and watches over my life. And best of all, He has already won the war.

An Update and a First

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It’s update time, and boy do I wish I could tell you I was footloose, fancy-free, and feeling fabulous.  (Too much alliteration?) But alas, that has not been my story these past few months.  I told you in my last update post about a month ago that I was on oral antibiotics and steroids after contracting my fourth virus for the winter, and was beginning to feel much better. I did feel great while I was on those treatments and for a week or so once I was off.  I then entered what I thought was an adjustment phase where I didn’t feel as good.  My body had to readjust to fighting the colonized bacteria in my lungs and inflammation without the help of the medications.  I was still running on the treadmill and even got to the point where I could do a combination of jogging and walking for two miles in 28 minutes.  The exercise definitely got harder once the medications were ended but I still thought I had made some sizeable gains as I was tolerating a much higher level of activity.

Imagine my shock when at my follow-up pulmonary appointment last Thursday my breathing test (FEV1) was down an additional three points from where it was when I was sick. I knew I wouldn’t be back to the 49 I was at before virus number one in December, but I thought surely, surely I had made some progress.  I couldn’t believe that it was even lower. My doctor was surprised as well, enough so that he scheduled a repeat test just four days later to make sure it wasn’t a fluke.  I wasn’t showing any signs of an overt infection–my temperature and oxygen saturation were normal, my lung sounded clear, my congestion was unchanged in color, texture, and quantity, my exercise tolerance was up, and my weight was up.

Over the weekend I did notice the advent of some increased cystic fibrosis symptoms–more coughing, more wheezing, more windedness, more tiredness, but I still thought for sure the test was wrong.  On Monday I had my retest and the FEV1 dropped another point, for a total loss of 17 points. Sometimes you just can’t win.

After a frustrating winter, this latest development was incredibly demoralizing. I have worked hard exercising and eating right and trying to take good care of myself, but those FEV1 numbers just don’t want to budge. My doctor was very concerned as well. We simply cannot leave a number in the low 30s alone, so it is time to get a bit more aggressive.  I had a chest x-ray which didn’t show anything unexpected, and will have a CT scan early next week.  I’m back on steroids, just a low dose this time, and for the first time, I started IV antibiotics.

I know, the other CFers out there are probably scratching their heads.  I’m aware that most people with cystic fibrosis have their first round of IV antibiotics well before age 36, but that hasn’t been my experience.  Because I didn’t struggle much with my lungs until my late 20s, I have not required frequent antibiotic usage and oral antibiotics have always been very effective. However this time, the oral antibiotics didn’t make a lasting difference, so my doctor felt that using IVs, which are more potent, was a must as we aim to get my lung function back to baseline. Although it’s disappointing to have this first, I’m very grateful for a stronger treatment option and feel blessed to have made it thus far without needing them.

Yesterday I got a picc line placed.  Picc stands for “peripherally inserted central catheter” and is a thin, flexible line that runs through a vein in my arm towards my heart. It allows me to do my IV antibiotics at home. Last evening the visiting nurse came to teach me how to administer the drugs and I will be infusing them for the next two weeks.  It will be a bit rigorous as the medications need to be infused on a strict schedule, and I will have four infusions a day.  One set of infusions is back to back which will mean an hour and a half of being attached to a pole. This schedule will mean also missed hours of sleep.  But I hope and pray that this will get me back on the upswing.

Lucas checking out my picc line.

Lucas checking out my picc line.

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First he “fixed” the tubing (with his flashlight)…

...then my line!

…then my line!

I was a bit concerned how these treatments would affect Lucas. He is a pretty sensitive little guy.  So far it is going well.  He seems to think the line is some type of accessory (it is purple after all!) and he told me he likes it. He has asked me many times today if I’m okay and if the sick is gone, and has been showering me with hugs and kisses and love, so I know he’s aware. There have been a few signs of stress but overall he’s doing great.  And I’m not gonna lie, the extra love and affection has really helped me get through this day.

Yesterday as I was getting my line placed, the nurse asked me if I’d like to listen to any music on Pandora.  I asked for some soothing classical music.  Just as they were about to make the incision and place the line, a piano rendition of the hymn Great is Thy Faithfulness started playing on the radio. The title of my blog, Bright Hope, comes from verse four of this hymn (written by Thomas Chrisholm in 1923):

Pardon for sin and a peace that endureth,
Thine own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

This perfectly timed reminder from God of His faithfulness was just what I needed. I have been struggling to remain hopeful as this current fight has seemed long and hard. I feel at times that I am pushing against an impenetrable, immovable force. The feeling of defeat is poignant when those FEV1 numbers drop and drop without any clear explanation, and none of my efforts seem to matter.

But I have experienced God’s faithfulness over and over in my life. I know this current struggle will be no exception. He does give me strength, and hope.  His mercies are new every morning. I don’t know exactly how this will all turn out, but I’m hoping and praying for complete healing.

My sweet little lover boy. (Yes, my IV is hanging from a lamp...but that's a story for another day).

My sweet little lover boy keeping me company during my infusion.

In the meantime, you can be sure I won’t give up. The “blessings all mine” are so worth fighting for.

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
Great is Thy faithfulness, Lord, unto me!