Monday, August 22, 2011

CF venting...just gotta do it sometimes!

Since I've started blogging, I haven't really vented about CF here. But after visiting a friend in the hospital today, I just feel the need to get some things out...

I met a young girl through her dad, Joe. Joe was a sweet man and adored his two daughters (H and S) and his wife (T). His youngest of daughters (S age 25) has CF and when I met her she had some mild complications but nothing severe.

Joe died a couple of years ago and if he were alive today he would be very sad. S has started having more complications within the last year and is in the hospital again. I finally went to see her. She looked tired but was in good spirits. Her mom was with her. I gave her a big hug...I can't imagine how she's feeling right now. Well, I can imagine...I guess that's why I'm venting, right?

The doctor's told S that she needs to start thinking about a lung transplant. They were also planning on sending her to stay at the University of Iowa hospital to get care from the adult CF team, since we don't have one in Des Moines.

I stayed about an hour and we talked lots. I hugged them goodbye and went to pick Andrea up. I knew I had to tell her about S and it just made me sad. You see, we really work hard at staying upbeat. At not letting the beast that CF is get to us. But alas the beast wins sometimes and today is one of those days of defeat.

Andrea took the news so-so. She asked some questions but she had that look like she didn't really want to hear what I was telling her. You see, last week during her CF clinic she learned more about the cirrhosis in her liver. The GI doctor had to increase the dosage of her liver medication since she's bigger and weighs more. Andrea waited a few days, then asked what all that meant and if it will get worse. It was hard explaining it to her, but it had to be done. She understands better but I know it must be difficult at her young age to absorb all of this. And now our friend S is possibly going to need a lung tx? It's a lot to take in in such a short time.

Lately there have been more hospitalizations of kids' that I know because I'm friends with their moms. Andrea knows most of them and has even friended one of them on Facebook. She asks about these kids often, so I know she thinks a lot about how CF affects them, and I'm sure she worries if what happens to them could happen to her. Oh how I hate that she has to worry about things like that!

My profile picture on Facebook is FUCF because that's what I keep repeating lately. I rarely say Fuck You's usually just Eff U CF. But I can honestly say that right now and probably for the next few days it will be...


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