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Good News at Last

3 Oct

Finally, some good news to report!  Jody has been home from the hospital for a little over a week and at last he is on an antibiotic regimen that seems to be working; he’s feeling a little better, and his kidney function is stable.  After two months without much improvement, it’s wonderful to see things turning around, however small or short-lived they may be.  I don’t mean to give the impression that things are great, but we have come to appreciate small improvements, and don’t expect greatness.  All things considered we had a good week, with our stress level thankfully a little lower.  Best of all, this week I didn’t feel like I was watching Jody suffer as I had a few weeks earlier.  How refreshing it was to watch him a little more “active.”  I’m so thankful these antibiotics are doing their job!

We had a follow-up appointment at Hopkins on Tuesday and unlike other times over the past two months, we didn’t pack a bag expecting to stay.  It was wonderful to ride home with my husband (since I’m accustomed to leaving him there and driving home alone).  The plan for now is to continue on these antibiotics for one more week.  Truthfully though, I’m nervous for him to come off them.  I love this small turn-around and am scared to see him turn back around in the opposite direction.  The fact that we are heading into cold and flu season also makes me quite paranoid.  I wish the only thing I had to worry about was our girls picking up colds at preschool.  Period.  Instead, I worry about the way that these simple colds will wreak havoc on Jody’s lungs and in turn, our lives.  As much as I would like to keep my family in a bubble of protection, I know I can’t.  All we can do is practice good hand hygiene, and pray that this fall/winter will be merciful on us.

You might remember from a previous post that the doctors wanted to do an overnight study on Jody to measure his oxygen level while he sleeps.  Well, the results are in.  As we suspected, his oxygen level is dropping too low when he sleeps.  This is most likely the cause of those headaches he wakes up with nearly every day.  To fix this problem we’ve welcomed a new member into our home, and Jody has affectionately named her, “Flo” (aka an oxygen concentrator).  This means that from now on, he will use oxygen while he sleeps.  Adjusting to the nasal cannula (the prongs that go in his nose to deliver the O2), wrestling/getting tangled up in the tubing, and the noise of the concentrator are taking some getting used to, but this morning he woke-up headache free!

“Flo”

In addition to oxygen at night, the doctors recommend Jody begin using it with activity as well.  While at our appointment on Tuesday he did a six-minute walk study with a physical therapist, which was required as part of the transplant work-up.  As we expected, it revealed that he is dropping his oxygen with activity too.  The question then becomes, what is activity?  Does he need oxygen just to walk up the stairs at home?  Is it warranted if he picks up our daughters from preschool?  Does he need it to walk into church, even if he won’t need it once he’s there and sitting down?  The thought of going out in public wearing oxygen is not easy for Jody.  He feels self-conscious, and fears the looks, the sad faces, and the fact that he can no longer hide the battle going on between him & his lungs.  Please pray that God would give him the courage he needs to take this first step, and that people would be kind and accepting in return.

As you can see, even though we’ve had a small turn-around this week, we’ll never really go back to the days when CF was a distant thought in our minds.  Instead it now plays an active role in our lives, often dictating what we do and don’t do.  Even so, we continue to enjoy the small moments in life and give thanks to God for each and every day!

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Are You Aware?

5 May

Do you remember the first time you learned about Cystic Fibrosis?  It has been my experience that unless you work in healthcare or have a personal connection to the disease (most likely through a friend, family member, or acquaintance), the words “Cystic Fibrosis” have little or no meaning at all.  This needs to change!  The month of May is Cystic Fibrosis Awareness Month.  Consider these statistics from the CF Foundation website:

  • 30,000 children and adults have CF in the United States.
  • More than 10 million Americans (1 in 31) are symptomless carriers of the defective CF gene but do not have the disease (you could be one of them).
  • About 1,000 new cases of Cystic Fibrosis are diagnosed each year.
  • The predicted median age of survival for a person with CF is in the late 30s.
  • There is no cure for this disease.

Since 1955, the Cystic Fibrosis Foundation (CFF) has been the driving force behind the pursuit of a cure.  This foundation has been crucial in advancing an understanding of what was once a little known disease, creating treatments and standards of care, as well as fighting for a cure.  The CFF invests aggressively in drug development research.  We personally are looking forward to a new drug that just received FDA approval and will soon be available for patient use.  This drug will significantly reduce the time it takes for Jody to do his treatments each day.

Here is what you can do to increase awareness:

  • Talk about CF in your social networks (i.e., Facebook, Twitter, Google+, etc.).
  • “Like” the Cystic Fibrosis Foundation on Facebook for the latest news on what’s happening in the CF community.
  • Take some time this month to educate someone about Cystic Fibrosis (and if it’s easier for you, share this post with them).
  • Participate in a “Great Strides” fundraiser walk (thank you to the friends and family we know who are already doing this).
  • Donate here to the CFF in honor of Jody or someone else you know who is fighting against CF.

Finally, I’d like to share this short award-winning video, “Adding Tomorrows.”  This video gives you a small glimpse into the lives of those with CF and the importance of spreading the word so that one day we can say Cystic Fibrosis is a disease of the past!

One day CF will stand for Cure Found!

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