KALYDECO!!! and My passion =)

Describe a Passion you have - Day 18

Of course I have many different, very deep passions. I am a very passionate person and everything I do is because of passion. I think my passion changes daily; maybe even hourly. It truly all depends on my mood and what stikes me as the most important thing at the moment.

Why do I think this?

Because this morning as I was babysitting and the little one was watching her morning cartoon, I wrote out a blog about my biggest passion in life being working with children and helping them. My second biggest passion was just helping people in general. And I had my third biggest passion as finding a cure for CF.

But I think that has all just went down the drain tonight.... I think my number one passion, for the moment, has changed....

Why do I say this? What changed my mind?

Well because I am beaming with excitement and hope because KALYDECO WAS APPROVED BY THE FDA!!!!! (This is a new CF treatment that is LIFE CHANGING! - I will talk more about Kalydeco further down)

So one of my passions? Finding a cure for Cystic Fibrosis. Helping people who are fighting CF live a better life. Working with families who are struggling financially to get treatment for their loved one. Supporting those going through the transplant process needing to raise hundreds of thousands of dollars. Spreading awareness about Cystic Fibrosis and getting it noticed.

I want to make an impact; not just a little one - but a big one. I want to help. I want to change lives. And more than anything I want a cure to be found.

Ever since I joined in the battle of fighting for my husbands life about 5 years ago I have been passionate about raising money and awareness for CF. I've raised money for Great Strides. I've done my best to share projects and videos of CFers to help spread awareness. I've been trying my hardest to share and spread the word about The Moganko Project so CF can be spread to a bigger audience. I didn't want to see my husband suffer and struggle for every dang breath he took. I wanted to go out and live out lives instead of being stuck inside and in the hospital nearly every day. I wanted to be "normal". I was envious of those CFers who had better health than Spencer. We desperately needed something more for him, something I could not alone give him - but, unfortunately, it just wasn't available in Spencer's much-too-short life span. When he was sick for those last 4 months in the hospital, my sole concentration was raising money for him to get a transplant and to help him succeed in his therapies and treatments and to keep him positive. I had no view outside of saving my husbands life. My passion for helping other CFers and their families got buried.

Spencer's passing put a new spark of life into me. It resurfaced my passion to help others living with CF fight, survive, and thrive. I made SO many friends with CF or related to CF in some way this last year and I am determined to help them so that they do not go down without a fight. Since I lost Spence, I have been very driven to use what money was left over from medical and funeral expenses to help others going through the transplant process, and needing a boost financially to help with treatments and medications. I want to do whatever I can to help. I just need to find the right way in going about this - but it WILL happen.

I have thrown myself into trying to figure out new ways to spread awareness about CF and try to raise money. All of this is a work in process an won't happen over night. but it will!

And then today's news of the FDA approving Kalydeco THREE months early... Wow.

That fueled my fire even more. Gives me an even bigger passion for fighting for my lovely CFers.

Kalydeco is a new treatment for CF that treats the root cause of CF. It targets the cells. This is breakthrough for the CF community as it is the first medication to do this. This is a HUGE step towards finding a cure.

We

are

so

close!!!!

The thing about Kalydeco is that it only treats a mutation present in 4% of the CF population - that is great news for them! But it also leaves 96% of the CF community without this life saving and changing medication. They are still working towards developing a treatment for more common mutations. But these more common mutations prove harder to treat and it is VERY expensive.

Did you know that the Cystic Fibrosis Foundation gets NO government funding?? Every single penny that is used to produce treatments, help, research, and eventually a CURE comes from those affected from Cystic Fibrosis in some way whether it be the patient, the caregiver, the friend, or the families. It is ALL up to the public to fundraise to raise this money. I heard that it takes approximately $12,000 with every HOUR of research that is done. WOW! That is a heck of a lot of money. And that is why it is SO important that we raise funds. We cannot get to a cure without doing so.

These reasons are just a few of why I am SO passionate about this. I know, I know... I went on a spiel about all of this - but I hope you learned something about CF, Kalydeco, and myself.

Want to help out? Donate to the Cystic Fibrosis Foundation. www.cff.org =)

CF girlfriend

Man.. being the girlfriend of a CFer can suck sometimes. Don't get me wrong, I love my boyfriend more than anything in the world, and I'm so glad that I'm with him. But more often than not, it brings frustration that is most definitely unwanted.

The past year has been really rough on Spencer, and I as well. I don't know if it's because I'm actually living here, finally, so I'm actually experiencing what it's like to be around a CFer the majority of the time, or if it's just been a more difficult year then most. Spence has been in and out of the hospital... but way more in then out. He had 3 near-death calls in 2009 alone.

1) Hemoptysis - Severe lung bleed, he was in ICU for several days. This was the first really big call that things are very serious with his health. He got a will lined up and had some big talks with his family.

2) Pericardial effusion - fluid around the heart. That was very scary. he went into the hospital for routine stuff, his kidneys were acting up a bit, and then all of a sudden he had this fluid surrounding his heart - and A LOT of it. They had to cath it to drain it all out and it just kept building up. If I remember right he was in ICU for a little bit there too. They found out it was some kind of virus and it finally all straightened out.

(Note that for these first two I was still living in Kansas. Both events were extremely scary for me, but I wasn't there with him and so it didn't have as big of an impact on me as this third one did.)

3) Bowel obstruction. Wow this was the closest call of all. He was inches away from death here. Hearing about this from all the doctors and nurses time after time again after the fact, it makes me realize how serious this was and how close I was to losing him. He was in the hospital for a clean out, was discharged, and 2 days later landed himself in the ER due to spiked fever and severe abdominal pain. Long story short, he had a severe obstruction which caused his ammonia levels to build up to a dangerously high level. He acted out very violently and landed in the ICU, restrained and intubated for a couple weeks. He was in a drug induced coma as they tried to free the blockage that he had. I was in Utah for this and I saw him in ICU, intubated and unresponsive. This was the most sobering moment for me. Even though I knew he wasn't dead, it felt like it. It was the most scariest experience that I have ever went through. I had to travel back to Kansas during this all. After his levels dropped, from various reasons, they let him wake up and extubated him. It was so good to hear his voice. The first thing he did when he was extubated was call me. =) Turns out it was a MUCUS PLUG that was obstructing him.. and it was way high in his small intestine. -shakes head- What an experience.

With that all said - you can see how rough it's been over the past year. In and out of hospitals constantly. Battling life threating incidents to minor lung infections. This really got Spencer's outlook down - I honestly can't blame him, though. It effected mine a little bit too. But I've recovered from it all and am on the path of, well... fighting, again. I just wish I could get Spence in the same boat with me.

It's hard when only one person of the two person team is on the page. I can't do it for him, and I can't force him to do it. I would trade my lungs for his in a heartbeat, but I can't. I really wish I could get him motivated to start walking, biking, ANYTHING. I really wish I could get him to take all his meds, every day, morning and night, like habit. If only he did his treatments 100% - albuterol/pulmozyme, vest, pep, exercise.... Every single time, twice a day if not three times. I think we could have it made if this happened... But again, I can't do it for him.

I'm hopeful, I really am. I'm determined to get his PFTs up and get him to ween off the oxygen. It's going to take time, and a heck of a lot of work. But it can be done, through smiles, laughing, and even tears (and lots of them) it can, and will be done.

This year is going to be a year of not looking back at past mistakes. I'm in it for the long run, and he needs to get his mind in the same place. This year we're making some big changes. We're finding an apartment and moving in together around August of this year. Main reason - for his health... His home environment as it stands, is not a good place for him. He needs constant support and a partner to stand by his side constantly.. get up and exercise with him, just constant encouragement. He needs a better environment - and I can't be more excited. Granted some of this is more me, and my health, too - but it's mainly for him. Even though it won't be easy - I'm going to make this the best year possible =)

So despite all the frustrations and down days... I think i'm going to make the best of everything.. I just needed to talk about this past year, as it's been really rough. -deep breath- blogging really helps =) takes my mind off of some of the rougher issues.

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