Monday, November 18, 2013

I am grateful for CF.... Wait?! What?!!

Yes that's right, I'm grateful for my daughter's disease that I despise with every fiber of my being. Makes no sense right? 

Well, I had a really crappy appointment with Molly's CF Specialist this past friday. She seems to be doing ok but her weight gain was only and ounce and a half. Booooo. They aren't too worried about it but that wasn't even the tip of the scale this time. Remember how in my last post I mentioned my worry about insurance not covering her medications? Well.... So it begins. I've been using samples that they have been giving me and haven't needed to fill any perscriptions yet. Except her inhaler. She has been starting to get super 'rattly' in her lungs. Not horrible. But just more noticeable. I mentioned this to the Doc. She decided to be proactive and start her on pulmozyme. 

Here is a little info:
Pulmozyme® is an inhaled medication used to treat the symptoms of cystic fibrosis (CF). It helps thin the mucus in the lungs so people can cough it out more easily.

Pulmozyme, along with other CF therapies, improve lung function in people with CF. Taking Pulmozyme every day has also been shown to reduce the risk of lung (respiratory) infections.
Pulmozyme acts like “scissors” in the mucus. It cuts up the DNA strands outside the cell that can make CF mucus thick and sticky. This DNA is from the white blood cells that work to fight lung infections. Even if a person with CF has not had a lung infection, the white blood cell DNA is still in the mucus.

So a 'typical' CF treatment goes like this:
1. Bronchodilator - like albuterol inhaler
2. Mucus thinning medicines, like Pulmozyme
3. Airway clearance-like chest percussions
4. Inhaled antibiotics


Pulmozyme is something that is going to be part of her survival in life. Even with this drug, CF will continue to damage her lungs but this drug helps extend the health of her lungs. Well.... my insurance doesn't cover it. They don't even cover the machine (nebulizer/compressor) in order for her to take the drug. They also don't cover her vitamins. Common seriously. Vitamins people!!! I'm waiting to hear back to see if I get my 'special' approval. These are things she needs to survive. These things are not optional, and they aren't covered!!! This is wrong, and it's only the beginning. I.... We are going to be constantly battling 'the system' trying to get the things she needs for survival. 

As I was sitting there in the parking garage of the hospital, having just left their pharmacy empty handed, I just sat and cried. I was being slapped in the face, again, with the reality of CF. Its such an ugly, horrible, cow pie and bologna sandwich, stupid disease. I drove home with this dark cloud full of thunder and lightening, just hovering over me. How? What? How? Why? When? Why? What the heck? So many things storming in my mind. 

Wait.... And your grateful for CF?!

Why yes I am! Let me tell you why. 

I teach Relief Society in my ward and it was my week to teach. I had been going over my lesson but had been struggling with where to go with it. So I kept putting off writing it up. Saturday, I decided instead of staying home and working on my lesson I would go help my friend who was in desperate need. I love this girl. Seriously. She's an amazing mom and friend. She has some major trials going on and I was ever so happy to go and help, even just a little. I left her house that night feeling on top of the world. Serving had put some of my broken pieces of me back together. And what do you know... That's what my lesson was on. Doing good in the world. Serving one another spreads happiness. It makes the person your are serving happy and in turn it makes you happy. We get so wrapped up in ourselves sometimes and forget that the best way to be happy is by serving others. 

Our happiness increases when we help others find happiness.

We should have before us a strong desire to do good to others. Never mind so much about ourselves. Good will come to us all right if we keep our minds outside of ourselves to a certain extent, and try to make others happier and draw them a little nearer to the Lord. … When you find yourselves a little gloomy, look around you and find somebody that is in a worse plight than yourself; go to him and find out what the trouble is, then try to remove it with the wisdom which the Lord bestows upon you; and the first thing you know, your gloom is gone, you feel light, the Spirit of the Lord is upon you, and everything seems illuminated. -Teachings of Lorenzo Snow, Chapter 22
So what does this have to do with CF? I would've never learned this lesson if it wasn't


for my daughter's CF. I would have never noticed the difference in my happiness or how to get my broken pieces back together if it wasn't for the experience I had at the hospital the day before. I am being forced to grow, wether I like it or not, and it's because of my children. The Lord is working through them. Especially my sweet little Molly. I am grateful for Molly because she is a major blessing in my life and I wouldn't want her to be any different than she is now.

So yes..... I am grateful for Cystic Fibrosis.



Not even 3 months! She's such a strong little girl! 

5 comments:

Cortney Twila. said...

I really hope your insurance will approve your medicines! They are definitely a handful to work with. I know at my house we get our vitamins for free through the CF CareFoward program. (http://www.creon.com/CFPatients/CFCareForward) I can't remember if she is taking enzymes or not already, but if she ends up on Creon this program will send you some vitamins and nutritional drinks (like PediaSure) for free every time you get Creon filled.

Brianne Houston said...

It's a crazy thing being grateful for something that can be as mean as CF. There will be many times throughout your families journey, and especially Molly's as she grows up, that you find yourself being grateful for CF. There is so much you learn, so many experience and so much you appreciate in life that others may not when you are faced with a disease like CF. I'm sorry your insurance company is being a pain!! If you ever need advice on that my Mom is an expect when it comes to our insurance company and might be able to help!

Cassandra said...

I completely understand your frustration with insurance! It's a constant battle and endlessly obnoxious! The CF Care Forward program is really good but if you don't sign up for that you can usually buy AquaADEK vitamins on Amazon believe it or not. Also Pulmozyme has a copay assistance, so if it does get covered you can use that to help with cost (http://www.pulmozyme.com/insurance/copay-card.html). I can't believe they won't even cover a nebulizer, how ridiculous! If you're desperate you should be able to just buy one outright online or from a pharmacy, theyre not crazy expensive. There might be other nebulized meds (like Pulmicort) your DR could start her on in the meantime to get your little one used to nebulizer treatments and try to combat the junkiness. We started around 4-5 months, it was a pain at first but now that we have a 3 year old I'm glad he was trained early! Good luck!!

Kaela Beach said...

Insurance is the worst! Fighting with them to cover basic medications and watching Derek get kicked off in the middle of both transplants, leaving me with hundreds of thousands in bills is really tough. But it is the tender mercies in life where we get to catch a glimpse beyond our sufferings that put things into perspective. You're doing great.

Shalyse Rogers said...

Thanks, Everyone!!