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!