Friday, May 3, 2013

CF doesn't just affect the lungs

While most of the discussion about CF revolves around the lung issues our CFer's have that is not all the problems they can face. (I must add quickly that I am having a hard time not saying "CF kids" as that is what I deal with a CF kid, but I want to include all CFer's in my posts not just kids). CF is a whole body issue. It affects so many organs due to the underlying gene mutation that causes it. (which I just realized I think I missed posting about that whole thing so I am going to go into that later). Here are a few of the possible other conditions that can affect CFer's. (our experiences will be under the pics in purple)

Due to all the lung problems Zach had as an infant and toddler he already has slight clubbing in his fingers and toes. It isn't to the point where it is extremely obvious to the untrained eyes, but will get worse as he gets older and has more problems.
 We have been dealing with "acid reflux" all of Zach's life. To help deal with it he has been on prevacid for years. When he was a baby he would only eat really bland foods (oatmeal was his favorite) and as he's grown up he has become a very picky eater and is very hesitant to try new food for fear that it will bother him.

Ah....malabsorption...this is the best part of CF (NOT!!!) This was my second clue that something was just not right with my son. This is why so many CF babies deal with Failure to Thrive. Our kiddos pancreatic ducts are clogged full of mucus and can't secret the enzymes needed to digest their food....which also causes some very, VERY disgusting foul smelling poops. This is also why my little man looked like an Ethiopian baby when he was little(and that's what we jokingly called him)
This has been one of our biggest battles. Zach has had 2 sinus surgeries so far to have polyps removed and to clear our his sinus cavities (it's like a rotor-ruter they put in there to break up the hardened mucus)I think the kid has only been able to smell good for a total of 6 months or so of his life. It seems we are always dealing with blockages in there. He loves it when they clean him out because he can smell all the wonderful smells...and some bad ones he wishes he couldn't smell!
Those are the related problems we deal with at the moment. With each annual set of blood work and chest xrays we worry about finding any of the following.

We watch very closely for this. Zach battles a lot of respiratory infections as he has MRSA in his lungs, so once the coughing starts we are on the look out for hemoptysis.

This is one that I dread having to deal with. Even at 12 Zach knows he wants to be a father. And he will be able to be, it may just take more work.

Zachery's liver enzymes are monitored very closely because he has had funky test results in the past.

These are a few of the complications that can occur with CF. Because the lungs are so greatly affected it also can cause heart problems (like pulmonary hypertension). A good portion of CFer's have to have lung, heart and liver transplants. As you can see, health care for these people is a HUGE issue. But when you are blessed with a child like our Zach, each day you are given is a gift and you wouldn't trade it for all the healthy kids in the world.

**I apologize for how small the graphics are in this post. For some reason I can't get them to resize.









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