Sunday, February 8, 2015

CF: The Bully

One miracle please:

I know my next post is supposed to be about CF & Marriage (and I actually started writing it). However, I'm saving it until tomorrow, because this is more important.  Also, quick update: I'm off IVs and now doing double doses: Tobi & Colistimethate nebs to try to increase my lung function.  I added this blog entry today, because I got to thinking...Where to begin...

Well, Cystic Fibrosis is tough and mean. It may seem like a lot of work (and it is...). Doctor's appointments every few weeks,  doing 9 nebulizer treatments a day, doing vest therapy twice a day, doing stomach tube feedings, surgeries, constant coughing, fighting infections, etc. BUT, none of that bothers me and isn;t why it's tough. Why? Because its just something I have to do to live and be healthy. I think of it as the same as eating or sleeping. It just means the amount of time in our day that is dedicated to keeping our bodies healthy is a lot more than the average person.  Sort of like a full time job.

CF  isn't tough just because of the work it adds, but because it is like a bully. Side Note: I've never been bullied, but I do know some CFers are because of their CF.  CF reminds me of a bully, because you never know when its gonna pick on you or beat you up. It can attack you when you least expect it, or tease you by thinking you are getting better when you're not.

It's an emotional roller coaster, "I'm getting healthier", "I got a lung infection", "I'm up in weight", "I caught a cold", "oops lost 5 pounds while sick, etc. Its never ending.  While I try not to live in fear of what will happen, you can't help but think about what the future holds and when your "bully" is gonna attack your happy bubble.

Imagine being a young kid and having CF. You need a lung transpant and you receive those life saving lungs at the age of 12 years old. Now think about the Rehab and work you go through in order to get healthy and go back to school the following year. You're excited get to go back to school, you have a stomach feeding tube (its helping you grow and gain weight), you're happy. You get to be around friends, sing in the school choir, and are starting to think life is good. Then within a year and a half from getting your new lungs, your body rejects them. You're taken out of school, hospitalized before Christmas and by Feb you are told you can not receive another lung transplant. I simply can't imagine how that would feel.

It is infuriating, 13 years old... 13!!!!! This is what Cloey & her family faces right now, so please think about her and her family (and if you pray, please keep them in your prayers). This little girl is simply a beautiful, sweet, fun, talented little girl that needs a bit of a mircale. , I've been thinking about her & her family & keeping them in my prayers.

It's really hard to see others with CF struggle, its tough to know there is nothing you can do, all while knowing this situation is a very real and that it happens all too often.

Just in the past 7 months I watched as another (online) friend, Alyssa rejected her new lungs. She was hospitalized for pretty much the entire year before her body couldn't keep up with her smile and spirit. Laura (my best friend, from childhood) passed away shortly after Alyssa this September. Laura never received a transplant. She was denied during the two years she fought to receive them. CF just kept picking on her and wouldn't leave her alone. If Laura wasn't fighting an infection, she was fighting her gastroperesis. If it wasn't that, then her blood sugars were crazy. She was constantly being beaten up by her CF. But, she was still pretty upbeat and trying to enjoy everything around her. It's beyond sad to see all these beautiful people struggle for the ability to breathe. Something I will never take for granted.

 If you never read about Laura's Journey, She was pure heart and I shared her story here!  

Watching CFers struggle is the single hardest part.

This is probably the main reason I'm so intense when it comes to CF fundraising. Every time I watched a friend either struggle, get sick, or pass away my "fight response" became stronger. It's one of the main reasons I started the CF Great Strides Walk in Princeton. During that time I was watching Laura struggle to survive, after she was denied for new lungs.  You feel helpless when this happens, so all you can do it hope, pray, support each other, and fight like heck. It really does feel like you're in lifelong battles against an "Evil CF Bully."

We have to fight. We do it for ourselves, other CF friends (both with us & gone) AND I like to think we do it for future generations. I know I do. Who knows maybe my future nieces or nephews or another future family member will have CF.  Fighting & fundraising: It's all I can do, so I'm gonna keep on doing just that!

So for now all I can do is hope & pray for a miracle for this amazing 13 year old who once sent me a video interveiw for my Grad School Project (where she explained how she felt having CF, getting news lungs, etc.)!

(and I will be posting my regular entry tomorrow, I just wanted to share about what was going on & how it makes me (maybe even other CFers) feel...)

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