CF Sucks

That last post was how I think about CF when I'm in my happy and hopeful mode. But I won't lie, as much as I try to keep up a good attitude, I can't do it all the time. CF sucks! As much as I hope Gwena will stay healthy for a long time, I know that she may not. Since I joined the online CF community earlier this year, two girls with CF that I knew of have died, young women in their twenties.

So far for Gwena, CF means enzymes, albuterol, saline, checkups, coughing, Haemophilus influenzae infections... but I have read about all that CF can mean and all that might be in her future. Pseudomonas aeruginosa, Burkholderia cepacia, home IVs, hospital stays, G-tubes, PICCs, Ports, bronchoscopies, sinus surgeries, hemoptysis, oxygen, lung transplants..... so many things and I hope she never has to face any of them.

Yes, I do try to keep a positive attitude, but it's hard to be positive all the time. There is so much to fear that sometimes it is overwhelming, paralyzing. Most of the time I don't dwell on these things because I don't know what the future may bring, and we may never have to worry about any of this. I will do my best to never let Gwena see the times the fears and worries do overcome me, and to focus on being thankful for how healthy she is now, rather than dwelling on the possibilities of her future.

But sometimes, it's hard.