Thursday, June 28, 2012

Kalydeco Update and other Random Collections

First off, since I'm a terribly inconsistant blogger, I thought I would give you my 1 month Kalydeco update, about 2 weeks late.

Basically all the side effects I've experienced have finally passed... except for maybe the increase acne. Oh what joy! I still have an amazingly productive cough, and I cough less frequently. Very similar to when I get out of the hospital. I have a great supply of energy but still no weight gain. I'm thinking I may need to start checking my sugars once again since that could be the culprit.

I had a clinic appointment 17 days into my first Kalydeco month. My lung function went from 2.33 L (fev1) to 2.63 L (fev1); also known as 70% - 76.6%! Amazing. I haven't seen a number that high since High School... 17 perhaps? 6 years ago! Also, please note that 76.6% and/or 2.63 L is about 2% .2L higher than my post hospitalization numbers, which never stick around for very long before I'm back down hovering around 68-70%.

I've noticed since switching over from cayston to Tobi, that I cough more on tobi, and I cough more gunk up during this tobi month. It's pretty consistant with my behaviors without kalydeco. I respond better to Cayston for puesdo killing than I do on tobi. However the difference is a lot more noticable on Kalydeco.

The only annoying thing I can think of about Kalydeco is I find myself needing to clear my throat of mucus ALL the time. Almost everytime before I speak, I find myself *ahem*ing. Tremendously annoying when you're trying to softly hum sleepy sounds to a tired baby and you all of a sudden can't hum anymore because the mucus in your vocal cords has made you mute. enter *ahem* and then you're good to keep humming but baby is also now awake. Sigh.

Next order of business:this article. The one about parents suing and being awarded 13 million in damages for their child born with CF. Ronnie Sharp- over at Run Sickboy Run- posted this on his facebook page and it received quite a few comments. The majority of commenters all had something to say along the lines of "That poor girl! Knowing her parents think her birth was a mistake" or "those parents are so selfish!" "messing with god's plans" and so on.

For a long time I've struggled with accepting that some people just don't mind their CF. It makes them stronger as a person. Tough for me to swallow but to each his own. Yet, when I read this article and then the comments afterwards all those pent up opinions wanted to break out. I wrote a comment, and then deleted it, not having enough courage to click 'enter.'

I truly believe that when people with CF claim 'they wouldn't trade their CF because it's made them who they are today," blah blah blah, that it's a coping mechanism similar to denial. No one would choose to be born CF, no one would wish their loved ones had it, no one would wish this children had it... so why, do people keep telling me they wouldn't trade their CF for the world? If they were truly honest about not trading CF, why would they be so excited for advancements for a cure? You wouldn't trade it, yet if a cure were to roll around you probably would be in line to rid your body of CF. So why not admit that you would love to trade your CF?

These parents are suing the company because they believe they were wronged. I agree with them and support them. If I had the chance to be born without CF, but due to perhaps some negligence on the labs' behalf, I was born with those 2 mutations, I would want to hold the company who messed up accountable. That little girl's life will greatly differ from her twins' life. No matter how much they try to 'normalize' her CF, it just isn't normal. It is a genetic mutation. A mutation. Something that should not be existing and function in nature, but because of advances in technology it is. I am terribly grateful for these advances, but Cystic Fibrosis is not something I would ever choose to have.

These parents aren't selfish. This little girl shouldn't be horrified about the 'wrongful birth' suit, she should be grateful that her parents cared that much, and put that much effort in to help alleviate some of the cost associated with CF so that perhaps the margin of difference between her twin brother or sister, can be that much smaller. I think we need to support these parents just like we do all the other CF families.

And that's that.