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CF=Confusing Factors

Long time since I have blogged again.  =0 I really do have the best of intentions but time seems to so easily get away from me.  However, I must make time to blog for me.  It is so freeing and therapeutic for me to write.  Plus, as the days and years ZIP by way too fast, I can use my blog to remember what so quickly slips my memory.

This week I have been pondering the mystery of CF a little.  I have a CF friend that had a transplant a while ago who is struggling with rejection, but by all outward appearance looks fine, going in and out of the hospital, but still carrying on with daily life and events.  I recently watched a clip of a reality tv show with a person with CF who was getting a transplant and literally “ran to the car” when she got the call about the new set of lungs.  Then I think of a friend of mine that goes into the hospital at least 3, sometimes as many as 5 times a year to get a “tune up” of 20-30 days at a time when he doesn’t look, act or feel sick.  Just starts to “feel” not his best and knows his lungs need some relief and a pick me up via iv med’s.  SO CONFUSING.  It seems like Cf is a disease that is quiet and yet some how sneaky in its ability to tirelessly focus on destroying a persons lungs and life if not attended to constantly.

Little closer to home, Rachel has started coughing this week.  I really think it is allergy related as everyone in our house has had the same clear running nose, itchy eyes, sore throat.  Regardless, our protocol through our dr.’s if she has had an increased cough for more than 2 days to start on an antibiotic.  She started with a light cough on Saturday.  By Tuesday night it seemed to have come full blown and she had several coughing fits that seemed to last forever!  Wednesday I called the dr’s. to get an antibiotic and she clearly needed it that night (long story, but we were not able to get it until the next am).  Next morning, sounded fine.  Very little cough.  All day, I heard nothing!  It wasn’t until the evening when Rachel said that her chest felt a little tight.  She said she thought she needed the medicine.   This is was a first.  For a while now we have been talking to her about the fact that it is her body and she needs to be able to communicate how she feels to us so we and the doctors can know what to do.  We try to “ask” with out suggesting or inferring anything negative.   So to hear her state several times that she thought that she needed the medicine was quite interesting.  I went ahead and gave it to her with a little hesitation (really hoping that God had just miraculously healed her as He is so able to do).   After her treatment she had another coughing fit.  She smiled and said, “I told you I need the medicine”.   This morning same story.  HUGE coughing fit for the first hour or more after waking and doing her treatment. Her treatment is designed to shake up the mucus so she can cough it out.  The confusing part for me is and has always been is coughing good or bad.  I have asked this question over and over to doctor after doctor.  Each time they say, it is good and bad.  Wonder why I am confused?? =)  The coughing is symptomatic of what is going on in her lungs, but only sometimes.  There are times that CF people are quite sick, only do not have any real signs, and maybe only a clearing of their throat.  When they do PFT’s those numbers are likely down, but you would necessarily be able to tell by looking at the person.  AND what is even worse, is that often times CF people are so stinking strong and stubborn that THEY don’t know they are sick because they get used to feeling like crud, or being a little short of breath.  HUGE key is being aware!

So knowing this about the way CF disease works, and the strength and fight of many of the CF patients…it seems hard to be able to read little Rachel at times.  It feels weird to tell people that she is “sick”, because if they see her or hear her, they would think…she does not look or act sick.  She is still running around, smiling and by all outside markers, looking healthy.  However,  I know that she is clearly not “baseline”, the catch word that we use in the CF community to express the normal “trend” in health. For example, if your normal is little cough, then you expect that to be where you are most times unless you are sick then you might have a more pronounced or more frequent cough.  Still others cough all the time and that is there baseline.  Rachel’s baseline is no cough, or a little cough when she does her hypertonic in the morning to get the ickies out from laying still all night.  So while it feels weird to ask friends to pray for her while looking good, I hear those early and late night indicators that intervention needs to be made to keep her well.   It is hard, and I second guess myself a lot.  Even yesterday, not being sure if she “needed” an antibiotic.  But praise the Lord that He walks with us every step of the way in this journey and gives us wisdom.  He is so good!!  We (Rachel and I) made the right call.  Early treatment is also extremely helpful.  We know that her body will need to fight the ?? whatever, but the bigger issue is that when your body is fighting off offenders wether allergies or colds, it makes more mucus and the mucus is what breeds bacteria.  So it becomes an issue of dealing with the secondary infection that is much more likely to form under those circumstances.  So, we now pray that her cough and lungs are able to battle these allergies/or whatever she has going on quickly and efficiently with little effects from the antibiotics.

Lastly, here is a shout out to all of the brave and strong CF people in our community that battle this disease with such grace and dignity.  You amaze me!  I am honored to learn from you and fight alongside you.  Thank you for sharing with me and taking the time to answer my many questions about issues that I will never fully understand because it is not my body.  I have just said a prayer for all of you.  Look to the Lord for your strength and keep the Faith!!

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