Wednesday, October 19, 2011

New drug for CF - mixed feelings.

This gives me so much hope:

This is actually a drug that treats the CAUSE of Cystic Fibrosis - not just the symptoms like other drugs currently available. They have made such huge strides with the treatment of CF. Spencer doesn't have this mutation, to my knowledge, but they are working on a drug combination for the Delta mutation - in which he has. I have so many friends with CF and I am excited that they might get a new chance at life, a longer and healthier life because of this medication.

But even though this is very exciting news, part of me is really sad - just sad to know that it is probably a discovery too late for my husband. I sooo wish that he could get better and could IMPROVE instead of just getting better enough for a transplant. Every time I think of this my world shatters.... each and every time. I badly want him to be able to take this medication and live a better life. Just thinking about the effect it could have on the way we live our lifes - he could improve, be able to do things he's never been able to do before... I just wish he had that chance.

Of course new lungs and a new liver give him that chance - but we aren't even close to being able to get him new organs. And NOTHING is saying that he will even get approved to be listed. I want to believe from the bottom of my heart that a transplant is going to happen - but I am getting soooo very discouraged. All the What-ifs cross my mind constantly.

I'm having a hard time dealing. I think the thought of losing him is really just a numbing thought anymore. I used to cry and get extremely upset every time the thought crossed my mind - but now... It's numb. I don't feel anything. OF COURSE there are times when my world comes crashing down and it hits me like a brick wall... but with my every day thoughts that he might not pull out.. I don't feel.

I don't want to believe it.. I don't want to accept it. I want to think that this hospitalization is just like the last. That he's super sick now, but he's some kind of super man and will pull through. But I don't have that guarantee. this hospitalization ISN'T AT ALL like any of the others. His lungs were not failing. He would improve, come home, improve a little more, and get sick again - that was our life. At first it was hard; but then I learned to accept it. But now - I have to accept a new reality. A harsh one. That he might not get to come home =( I don't even know how to handle it. Taking it day by day. It's all I can do. Hanging in there. I have to - there is no other choice.

What really gets me is how much better he was getting. How much he was improving. We started Cayston and he'd been trying to be a lot more active. He was doing his treatments just like he was supposed to.... 2-4 times a day... And most every single day he would do it 4 times. When he wasn't feeling well - he would just sit there on his vest for hours at a time. He said it took away some of the chest pain and helped him breathe better. He was/is a trooper. But it just proves that this disease is SCARY. terrifing. You NEVER know what is going to happen. his PFTs were the highest they've been in a year... 30%.... kind of crazy that FEV1 of 30% is really good for him.. but he was IMPROVING. slowly - but surely. WE COULD SEE HOPE. We were FINALLY starting to see the light at the end of the tunnel. And then one morning he wakes up, in critical condition... How do you deal with that? How do you deal?

My advice for anyone is turn your life around while you still have the chance! Spencer started to -and I wouldn't necessarly said that it was too late - because it is NEVER too late to turn things around.... I just wish he would have done it sooner for a possible better outcome. Don't let that happen to you. Every day is a new day, live it up.... Enjoy and love...

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