TRIKAFTA!!!

 

November 6th, 2019 I swallowed my first dose of Trikafta!!!!! I have felt every emotion, some I didn’t even know existed. We have waited almost 40 1/2 years for this moment! 

Heres to hoping for a prolonged future, the chance to take a deep breath with ease, and ditching this damn leash... a girl can dream and I am dreaming BIG!!! I have really high hopes for this drug. I am putting every single egg in the basket and really it’s because I don’t have any other choice. I think it’s ok to want big changes and to want them instantly. But in reality I think it will take time and my continued hard work and determination. Trikafta has a lifetime of disease and damage to work around and I just have to remind myself of that.

I can’t help but feel excited and nervous, I am hopeful, and I am beyond grateful for the opportunity to take this drug that I have been waiting my whole life for. It does come with a heavy heart knowing that I have friends who need it now and don’t have it yet, and that I have friends who don’t even have this as an option. I see you guys. I love you guys. I promise you right now that I will NEVER stop fighting until everyone has a chance at something like this! When I say ‘Until It’s Done’, know that I say it with all of you on my mind and in my heart.

Today as I swallow my first dose I will be focused on visualizing a positive outcome with minimal side effects. I want to be able to live fully each day and not just survive. Im envisioning stronger lungs and deeper breaths. 

I swallow this first dose for all who have gone before me, my special angels watching over me that I can’t help but feel had a hand in all of this. For my family and friends and everyone who has gotten me to where I am today. Thank you! This is for all of you! I have to quote my friend Gunnar “I am holding in my hands 30 years of cystic fibrosis research, millions in fundraising, hundreds of thousands of volunteer hours, and tens of billions of dollars of drug development funding. It’s surreal.” I am incredibly grateful! Breathe out Love! Xo❤️

Cheers To 40 Years!!

This is 40! You guys WE did it!!! 

Cheers to 40 years!! 

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I celebrated my 40th birthday over a month ago and I think I’ll just keep celebrating all year long!! 40!! I can’t stop saying it!! I know that the odds haven't necessarily been in my favor and getting here hasn't been easy, but it has definitely been SO worth it!! I just keep saying it over and over again. I am 40!!! It’s hard to believe!! I know what a privilege it is... I’m beyond grateful! ⁣

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More than half the CF population is over 18 now which is so incredible. However, the reality is only 15% of the CF population is over the age of 40. This statistic hits a lil to close to home, it’s very sobering to me, and frankly it scares the crap out of me... 15% is NOT ok. A cure is so close, but we just aren't there yet! That is why raising awareness is so important to me. We can’t keep losing people to this disease. ⁣

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I am truly grateful for every single breath I breathe. Hitting these milestones is so special to me, I know growing older is a privilege denied by way too many. Each year it is an honor to turn another year older and in some way I hope that I am honoring ALL the friends I have lost to CF. It really does take a village to live this CF life and I couldn’t be more thankful for all of you! 

Thank you from the bottom of my heart. I am happily grateful for it ALL!! Cheers to 40 AMAZING years!! 🎉 Breathe out Love! Xo❤️⁣

CF Awareness Month

Sometimes we often hear "But you don't look sick"... If only people had X-ray vision.... May is Cystic Fibrosis awareness month and it just happens to be my Birthday month...coincidence?! I think not!! 😉 

So please join me this month and let's make everyone aware... CF needs a cure! 

What is CF?! Well, CF is a genetic disease that primarily affects the lungs and the digestive system. It causes our bodies to produce a thick sticky mucus. The mucus builds up in the lungs and can lead to life threatening lung infections. 

This is my actual lung X-ray, I call these my pearly whites. The white is irreversible scarring from the thick sticky mucus and the many lung infections I have had. Both the mucus and the lung infections have resulted in loss of lung function over time, my lung function currently hovers around 27-28%. I literally think about every breath I take. 

A CFers day consists of hours of breathing treatments, airway clearance, exercise, and handful of pills, and that is just the regular maintenance for when we are healthy. We work so hard day in and day out. 

CF is inconvenient, CF is exhausting, and CF will never be easy. However, I believe CF has made me stronger, it makes me fight harder, love more, and truly appreciate life one breath at a time... CF is a blessing in an ugly disguise, it's my reality and its made me who I am today, for that I am grateful. 

I will continue to fight and do my part until that one day CF stands for CURE FOUND!!  Breathe out love! Xo ❤

Back to "real life"

As I sit here and reflect on the last couple weeks and transition back into "real life" I am truly humbled!! Hospital life is tough, and it can be frustrating, CF is definitely something you can't fight alone. Having a support system is so important when it comes to facing any battle, no matter the size. 

I am blessed beyond measure to have the support system that I do.... From the medical staff, my CF team, my CF family, to all of you that follow my journey, my amazing friends, my wonderful family, and to the two that started it all and that have been with me every step of the way, my parents. You ALL play such a huge part in my life and continue to keep me going time and time again. 

When I was diagnosed with CF at 11 months old my parents were told to take me home and love me because I probably wouldn't live to see my 10th birthday. Right then and there my parents chose to fight and fight like hell. When I was old enough I adopted my parents philosophy and joined the fight.

I fight so hard day in and day out, not just for myself but for ALL of you. These last couple weeks have served as a good reminder why I fight so hard. My numbers weren't really where I wanted them to be when I left the joint this time around. I left at 27%, numbers are so frustrating and I try not to pay to much attention to them, which is easier said than done. 

The most important thing is that I feel better, my mucus is beautiful, and I am HOME!! Healing at home and being in my own environment makes me feel like I'm practically cured. ; ) 

I am confident when I go to my hospital follow up appointment I will see that 30 again. I am going on 7 weeks now of the full dose of Orkambi, I am noticing lil changes and I am still very hopeful. 

Thank you from the bottom of my heart for all of your support. I'm not sure you know how much it truly means to me. You ALL make fighting CF that much easier, and for that I am forever grateful. Breathe out Love! Xo❤️

A Lil Glimpse Of My Life With CF

The video that was played at Taste of Utah this weekend.... 

https://www.facebook.com/lovetobreathe/posts/1183137438381135

We are so close to a cure, but we aren't there yet. We have to keep the momentum going!! 

Breathe Out Love! ❤️

Taste of Utah

With each breath roses grew. 

My garden gave me the most beautiful view.

The world can be so scary and dark. 

I'm thankful this rose allows me to see with my heart. 

-Somer Love 

This rose of mine has blessed me to see so much beauty in this world. Tonight my heart is overwhelmed with gratitude. As I looked around tonight I couldn't help but notice I was surrounded by a room full of beautiful people who gave so selflessly. It takes a village to live with CF and I couldn't be more blessed and proud to have the village that I do. 

There is so much work that goes into events like Taste of Utah. I thank every single one of you that had a hand in making tonight the success that it was. It's people like you that will make CF stand for CURE FOUND. I wish I could of spent more time with each of you that attended or volunteered tonight. This event takes all year to prepare for and it is seriously over in a blink of an eye. 

The donations for bid for a cure brought tears to my eyes. I am so very blessed!!! CF doesn't stand a chance with all of you fighting for a cure right by my side. I promise you we will see that day soon.... We just have to! I want nothing more than all my lil CF kiddos to have long healthy lives, and I promise you I will never stop fighting for that day we find our sought after cure. 

Breathe out Love! Xo❤️

Grateful For This Moment

I saw this quote and I can't stop thinking about it so I wanted to share it with you.... 

"Letting there be room for not knowing is the most important thing of all. When there's a big disappointment, we don't know if that's the end of the story. It may just be the beginning of a great adventure. Life is like that. We don't know anything. We call something bad; we call it good. But really we just don't know."-Pema Chödrön 

I guess we don't really know anything and that's ok. We say things are good and we say things are bad, but do we really know? I guess not, and that actually makes sense. All we can do is be in the moment, and take every moment after that as it comes. So for now, just be grateful for this very moment. 

Breathe out Love! Xo❤️

Orkambi

Although it may not be easy, there are times  where you just have to be okay with not knowing what will happen next... 

For the first time in a long time Orkambi gives me hope. Hope for a prolonged future, and hope that maybe I can live just a lil bit longer. I still have a lot of things I want to do here... I love my life. 

Will Orkambi be the right drug for me? Will it help me get off oxygen? Will it thin out my very thick mucus? Will I see my 40th birthday? Will I soon need a life saving double lung transplant? These are all questions I ask myself all the time. 

I have asked so many questions and I have read countless stories of everyone who has started Orkambi before me and the truth is everyone has had different experiences. We just don't know the answers to all of my questions because we simply won't know if Orkambi will help me until I give it a try. 

I have lived a very blessed life, having the opportunity to take this drug that I have waited my whole life for is just one more blessing I can add to my very long list. I am happily grateful for everything life has thrown my way and beyond grateful for all of you. I'm not sure if I have ever been more nervous about something, so if you have time or if you think about it if you could send some love, positive vibes, prayers or anything in between my way it would be greatly appreciated. 

As I swallow my first dose on Wed Sept 23, 2015 I was and continue to be focused on visualizing a positive outcome with minimal side effects. My heart is filled with hope that I will come out on the other side of these next couple weeks with stronger lungs and deeper breaths.... and most of all hope that I can stick around here just a lil bit longer. 

Sending you all so much love and from the bottom of my heart thank you, thank you, thank you for your continued love and support, you truly keep me going! So here we go.... Cheers to Orkambi and getting some answers to all of my questions. 

Breathe out Love! Xo❤️

Just Love

"And in the end, we were all just human... drunk on the idea that love, only love, could heal our brokenness."  

Hard to believe it was 14 years ago. A day that started out with so much hate, finished with so much love. We all came together, we were all ONE. From first responders to all those who lost their lives we will never forget. This day 14 years ago forever changed us ALL in some way. 

Never take anything for granted, love a lil more, and live life to the absolute fullest. Remember that where there is hate, there will always be LOVE, and LOVE will always win; it will heal our brokenness. 

Breathe out Love! Xo❤

Happy Birthday BC

Happy Birthday to this amazing woman.... 

It takes a village to maintain CF and I can't imagine growing up without her advice and expertise. I am blessed to call Barbara Chatfield aka "BC" a friend, not only is she a great friend but she was my pediatric CF Doc. I'm pretty sure I am responsible for a gray hair or two... Ha Ha!! I mean, she did have to put up with me throughout my teenage years. She deserves an award for that alone, so naturally in November of 2009 she was awarded the Love To Breathe® Award. 

"They say you have never really lived until you have done something for someone that can never repay you" and this quote couldn't be more true, I truly believe she is one of the many reasons why I, and I am sure many others are still here today. Happy Birthday BC! I hope your day is absolutely wonderful! 

Breathe out Love! Xo❤️  

 

 

 

Approved!!!

I have been waiting for a day of this magnitude for quite some time.... I am beyond grateful. Today's news for the CF community brings many emotions but most of all happy tears, I am so happy for all those who will benefit from Orkambi. I am grateful for all involved to help make Orkambi possible including the patients who were in the studies and for the patients who went before the FDA in May to tell their story. We are SO close to that sought after cure, but the reality is we aren't there yet. We need to continue to fight and fight hard! I will not stop until everyone will benefit from a drug of this kind, or even better when headlines read CF stands for CURE FOUND! 

Breathe out Love! Xo❤️ 

Trust your story

I'm grateful for my struggles, without them I wouldn't have found my strengths... Trust your story! 

Breathe out Love! Xo❤️ 

Taste of Utah!

"They say you have never really lived until you have done something for someone that can never repay you"                  

Ricki Lander and Robert Kraft consider it done.... You have lived!! Thank you from the bottom of my heart! Your generous donation last night of $25,000 will help pave the way for that sought after cure for me and all my Cysters and Fibros. 90 cents of every dollar goes towards funding research. A cure is so close I can "Taste" it!! Thank you Torp for being my beautiful BFF inside and out, I truly am so lucky!! Torp and Roberino it was so amazing to have you both be a part of Taste of Utah last night. I'm pretty sure everyone's mind was blown!! I love you both SO much. You're the cheese to my macaroni Torp... and that's the blue box Roberino just for you 😉 Ha Ha!! Thank you guys so much for your generosity and your commitment to finding a cure!! Tonight's Bid For A Cure alone raised $69,000 the best year yet. Thanks for helping to make that happen!! I can't wait to get a grand total of the evening. Xo infinity! ❤️