CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

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CF Clinic day!

Today was my regularly scheduled 3 month CF check up.  I am seen every 3 months for check ups unless I am sick and need to be seen sooner.  It seems to be a rarity that I can have an actual check up that doesn’t turn into a follow-up from IVs or being sick.  Well good news is, today was just a check up!!!

First stop was the scale.  I am holding stead and actually gained a few pounds which is good for me.  Holding stead or gaining is what we want to see.  I know most women want to lose and complain about their weight.  Well when you have CF and have a pancreas that doesn’t work right you are thankful for every pound you keep on.  I burn a lot of calories just breathing and coughing everyday so that is why it is important for me to eat a lot of calories and good fats.  It is best that I have a reserve tank for when I get sick so that I have that to pull from when I can’t eat well due to nausea do to meds and such.

Next up PFTs (lung functions).  I am happy to say that I am up a tad bit which surprises me.  My FEV1 was 1.50/50%, which is basically the amount of air I am able to move.  Another way to look at it is that I’m basically using the equivalent of 1 lung or 2 half lungs, mind you they are diseased lungs but they are still working.  haha  Last time I did PFTs my FEV1 was 1.39/47%.  When you do PFTs you do the text 3 times and they take your best one.  Well my best one was my first one.  The last 2 were below the 1.50.

The rest of the appointment was good.  My lungs sounded a little coarse but good.  My heart is still beating and I do have something between my ear and it’s called a brain even though it malfunctions at times.  They drew my yearly labs which check my vitamin levels, liver function, kidney function, A1C and a few other things.  Vitamin levels are important because my pancreas doesn’t work correctly to send enzymes to digest my food.  That is why I have to take enzymes when I eat so that I can absorb all the nutrients that I can, vitamins being one.

I will take this good report and enjoy it while it lasts.  I have been off of IVs 6 weeks (as of this coming Saturday).  I have been averaging IVs every 6-10 weeks maybe, give or take.  I would not complain if it was longer spans that’s for sure.  That is always the goal, to stretch it out as far as we can.

Until next time…

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2 responses to “CF Clinic day!”

  1. Margaret Avatar
    Margaret

    Great news!

    Reply
  2. Carolyn Nunes Avatar
    Carolyn Nunes

    Hello Dear Shannon. I was just thinking of you and thought i would drop a line.
    I am very excited to see you still advocating for your fellow sufferers.
    Ya know, I never knew that we had so much in common (pancreatitis and CF).
    I too have just started an organization to help my fellow Pankiers.
    Its called Project Purple Umbrella and it is to help both drs and patients by gathering together for speaking engagements.
    Our first one kicks off around the end of August/early Sept. in the Durham, NC area with Duke and I am so excited and honored to be speaking out for Pancreatic Awareness.
    I wonder, could you share any pancreatic issues with us that I could include in my presentation, as this disease is so rare and varied…???
    Please email me at johncarolynnunes@yahoo.com or visit the website
    http://www.purpleumbrella.org and share your story about any journey involving pancreatic problems as I want to help all who suffer with this disease.
    Those with Crohns have also had their disease amplified, so I want to include them also.
    I never realized how mih suffering went on in the world until I experienced this firsthand and I will not go down silently!!!!

    I hope you are well and are enjoying your summer although I know the heatwave had more than likely had an adverse effect on your breathing.
    I will pray for you and ask that HE comforts you and lightens your affliction to HIS will.
    GOD BLESS🌹

    Reply

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