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CF Appointment Update 3-26-14

We went for Rachel’s appointment today and it was again full of unexpected twists.  We were told we were going in to check for diabetes, however upon arriving and having the Dr. assess the situation a little more clearly, she was pretty sure the symptoms that she was concerned with were not as they seemed.  That was a huge relief for me!!  My heart breaks for all of our little cf kiddos/adults who have to deal with those issues on top of cf.  (We may have to deal with diabetes at some point, but really glad it wasn’t today!!  And truthfully hoping for never!)

We did pft’s.  They were 7 points down from last Tuesday.  Not great, but not a huge deal.  The Dr. wanted a pre and post test of her lungs.  She gave her super dose of a broncodialator to see if some of the coughing was asthma related.  Amazingly her pft’s went up 13 points.  Dr. said anything under 9 is minor and 10-14 is significant signs of asthma related cf.  She was diagnosed with asthma several years ago when her pft’s were constantly hovering around the 70’s.  When we did this same test her numbers jumped 18 points!!

Some concerns the Dr. expressed were that she still wasn’t sure that we aren’t dealing with pseudomonas (PA) hiding in those sweet lungs.  (She’s cultured it twice 7 years ago and then again about 18 months ago.  Most believe once it is there, it is always there, just hiding.)  We will wait for the culture and this treatment plan to assess again.  If no improvement start tobi, an inhaled abx.  Also not sure where this new level of asthma is from.  Could be this time of year with all of Rachel’s allergies?  Could be from the last cold/virus, that possibly caused some damage?  (Have to wait for X-ray at next appointment.) Or it could be a change in her body/lungs that just needs a little help to get over the rough patch.  Won’t know until we try a few things and see how her body responds.

I think we developed a good plan of action for now.  We are to double up doses on her broncodialator at all 4 treatments daily (and through the night if needed).  Dr also started her on a high dose prednisone.  (Please pray for us and her on the prednisone.  She has a REALLY, REALLY tough time on it!  The term “roid-rage” is manifested when she is on them in crazy ways.  =( Tough for her, tough for those around her aka siblings in particular.  She doesn’t sleep and emotions are EVERYWHERE!)  She added abx (cipro) too.  And finally, her inhaled steroid is doubled in strength, twice a day.  Whew.  Seems like a quite a bit of changes, as I write.  But truly just so thankful that we are not dealing with diabetes.  Asthma rather stinks too!!  And there are definitely some serious concerns with that component to her cf that could prove tricky.  But for now, we will pray that her body just needs a little help to get back to a good spot (on the lowest amounts of medications that she can do successfully).  CF once again giving us amazing ways to praise the Lord for His love and care.  

God is so good!!  We could feel the prayers of our family and friends today in awesome ways!!
Thank you so much for your prayers!!  Now we just need to get our girl feeling better…quick!


2 Responses

  1. Wow – you always have so many things to adjust to! So glad diabetes isn’t in the picture for now. Hoping and praying she is already feeling better!

    • Liz,

      Yes, this mama is very, VERY glad that diabetes is not one of them for now. She has had a bumpy last few months. Praying for some smooth sailing waters. Thankful that spring/summer is coming! =) Miss you, friend!

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