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CF-Not As It Seems

Zero Cough.

Every clinic appointment we are asked what Rachel’s normal cough involvement looks like. Thankfully, it is currently zero when she is well.  WE know that this “normal” will change.  But for now that is a blessed normal.  Ans so anything other than that gives evidence that we need to be watching and aware.

About 4 or 5 days ago Rachel said her eyes were really itchy, tons of sneezing (often when we first heart the lung tightness in those sneezes, because they sound different to my mama’s ear), then the nasal congestion started. The weather had changed from super hot to cool and humid with lots of rain and I immediately recognized the allergy symptoms (mostly because I had also been experiencing the same).  I, fortunately could take an Allegra D and feel better immediately (the doctors do not like her to take certain allergy meds because they have an anticholinergic affect which further dries her already dehydrated lungs and airways). Sadly, I watched Rachel’s crud start to go to her lungs. By Friday morning, I asked Rachel to really pay attention to her body and let me know if I needed to call in an intervention of medication for her as we are trying to help her understand and know her own body better.  Currently we are the watchdogs for her, but we are making the shift.  And she will have to fully take on this roll as she knows better than anyone else what is going on in her body.

By 10 am she asked me to make the call. We started the antibiotic that evening.

Saturday was a rough morning.  Lots of coughing and her lying around on the couch saying that she felt terrible.  She literally was coughing nearly every other minute. Exhausting to listen to, but more so to her sweet body.  So Paul and I did what any good parents would do…we made her get up and exercise with us much to her dislike.  Exercise is one the best airway clearance there is, if you can handle it.  We put the challenge out there for her.  And, praise be to the Lord,  she rose to the challenged.  Exercised and it actually worked that she stopped coughing and went on to have a wonderful rest of the day.

We went to church on Sunday, and ball games throughout the day.  I had asked for prayer for her the day before with all of the coughing. BUT SHE LOOKED FINE most of the day. Honestly, there were times that I second guessed the choice to start her on abx.  Sunday afternoon she even mentioned that she hated that she had to take the abx. for another 12 days when she feels so good. I know several people looked at her throughout the day and likely thought I was crazy. When we say people are sick, as a society we expect them to “look” sick (I always envision the “man cold” type when he looks like death warmed over).  BUT CF IS DIFFERENT!! Rachel was active yesterday, and smiling and happy throughout the day.  But…

Upon getting in the car from the last ball game, she had NON-STOP coughing all the way home.  After treatment, it was worse.  And then all through the night last night she COUGHED, and COUGHED!! =( Poor girl.

For those of you that don’t know, there is often a progression to lung issues, especially for Rachel.  It starts with a “hidden” cough.  Meaning that I hear the crud first with treatments.  Treatments and nebulizer are made to clear out the junk in the lungs.  On healthy days it is there, but sounds different. On days where things are “brewing” you really hear it!   You might not see or hear any signs throughout the day, except during treatment time. BUT it almost ALWAYS gets worse before it gets better.  The abx. is not to make the cough go away.  It is there for the bacteria infection that is certain to come with time and the thick mucus sitting in the lungs unable to move.  We give abx. to prevent the much more series secondary bacteria infection.  The tricky part is knowing that the body and lungs take a hit with every abx., but we have to avoid the more serious lung infection because it can turn to pneumonia, or damage the lungs if you don’t intervene.  Even with intervention, there is still a possibility that whatever she already has going on in her lungs (staph for sure and perhaps some more series bacterias) will feed and grow with the “allergy induced addition”. Such a tight rope to walk.  The progression of coughing involuntarily (or through the night) is part of that progression and says that it is definitely in Rachel’s lungs.

The crazy part to me every time is just how quick this all happens.  Yesterday, Rachel was a ball of smiles and the picture of health (so it seemed to those around).  Not one person that she encountered could have been able to tell that her body was struggling.  Sadly she and most with cf compensates so well because they are used to not feeling 100% that it is tough to tell.  As a mama, and a cf detective, I was watchful and prayerful.  CF sick is so very different that regular sick. I say it all the time, but…boy does it STINK!!  Praying for my girl today!

If you want to take a moment to “see” what and how the cf lungs looks different from the health lung, this is a great video!

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