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❤️

30 years ago...

My first grade teacher always used the phrase “patience is a virtue” she repeatedly said this to the class as a whole and the individuals who needed a good reminder. Even tho I may have been too young to really grasp the concept it’s something that stuck with me throughout my life. ⁣

⁣

30 years ago cystic fibrosis made headline news when the CF gene was identified by Dr. Lap-Chee Tsui. This was a HUGE discovery and a very pivotal moment in my life. This breakthrough changed genetic research and led to so many new medical advancements across the board. This was the first glimmer of hope for my family that came at a time when we needed it most. This new discovery solidified our fight and fueled our fire to keep moving forward in hopes that a cure would be right around the corner. ⁣

⁣

Fast forward to today... we are still very hopeful, we are still fighting, and we are still moving forward. I often whisper to myself “patience is a virtue” Some days my patience is tested, its not easy being patient, especially when you see first hand what this disease is capable of. I can’t help but yearn for that day we make headline news again but this time the headlines read “CURE FOUND”. 

There are amazing things happening right now because of that breakthrough discovery 30 years ago. Today we are closer to a cure than we ever have been before, and for the first time in a long time I am filled with more hope than ever. That hope is the virtue that will continue to fuel my fight as we patiently wait for that sought after cure. 

Breathe out love! Xo❤️

⁣

Cheers To 40 Years!!

This is 40! You guys WE did it!!! 

Cheers to 40 years!! 

⁣

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! ⁣

⁣

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. ⁣

⁣

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❤️⁣

Alex Award

I am truly honored to be the 2019 Alex Award recipient, to be honored and recognized for something that I feel like I was born to do is an indescribable feeling. I will remember this weekend for the rest of my life, it truly was so incredible and it meant so much to me! I cannot even begin to put into words or describe everything that I’m feeling. It’s been so overwhelming in the most beautiful, remarkable, inspirational way. Every second was jam packed with so much Love, Hope and inspiration it was so amazing and so powerful!

To have my family and friends once again by my side to experience all the energy that VLC stirs up was unbelievable. This award isn’t just for me, it’s for my amazing support system who continues to keep me going time and time again.

My support system plays such a huge part in my life, I know for a fact I would not be here today if it weren’t for the CF Foundation, my CF family, my angels, my amazing friends, my wonderful family, my babies, and all of you. I truly am so blessed and so very grateful.

Thank you from the bottom of my heart for this incredible honor! We really are stronger together and we will NOT stop until everyone  has a cure! Breathe out Love! Xo ❤️

Five Feet Apart

Just a reminder Five Feet Apart comes out this Friday, March 15!! Go see it!! 

There have been so many different discussions and opinions regarding this movie in the CF community. Whatever feelings you have towards this movie I hope you will at least see it, and when you do I hope it will help alleviate your fears and concerns and you will see how eye opening and well done it truly is. 

I have had the opportunity to see this movie twice now, once last month and again this week, both times the audiences were moved to laughter and tears. I thought FFA was incredibly done and very relatable! Last month I went with my parents and having them both tearing up next to me was an indescribable experience. I try to protect them from CF as much as I can but the truth is this is our reality. I don’t let too many people see the hard parts of CF, I guess my mindset is to always protect and be strong for everyone, I’m not too sure why I do this because it can be exhausting... I feel like it’s just the CF way, because I know I’m not the only one. There are some real, raw moments in this film and having my support system see it with me was a vulnerable feeling but at the same time it was liberating in a way to have them see the emotions I experience and all that takes place behind the scenes. 

As the cast was introduced to us and as they took on life with CF head on as so many of us with CF do I couldn’t help but feel Claire’s presence throughout the film. CF is different for everyone and although not everyone will relate to these stories that were portrayed so well I truly believe we will see a lil bit of ourselves within each character. Human connection is so important and when you live with a disease that prevents you from connecting with the very people that get what you’re going through having more people become aware and understand your world even if it’s just for two hours means more than you know. 

This film is bringing awareness to the forefront of a disease that so many people still don’t even know what it is, it’s going to be so eye opening for people. I truly believe it will help others have a greater understanding and new perspective not just of the CF community but the chronic illness community as a whole. There is so much more to CF than what you will see in this movie but this will get the conversations started and from there we can continue to educate and spread CF awareness. 

It’s pretty amazing to me that CF is changing before our very eyes with all these amazing modulators and the drugs that are in the pipeline. I believe CF as I know it and CF that is depicted in this film will soon be a distant memory and not the reality for the children that are diagnosed today, and that is worth celebrating! Breathe out Love! Xo❤️

Guest Post: Meet Jesse Da Costa

My name is Jesse Da Costa, and on this day two years ago I proposed to the love of my life my beautiful fiancé Ashley “Bea” Briggs. However, a few months after we got engaged I lost Bea due to complications from Cystic Fibrosis, she was only 29 years old. I honestly didn't know much about CF prior to her revealing to me that she had it.  After she told me I slowly started to learn all that I could about CF and how best I could support her. Unfortunately, I was only beginning to really understand the disease and trying to help her manage her health when she got really sick and ultimately passed away. 

It is my hope that by sharing my story that I can help others who are, or may be, in a similar situation. Being a Spouse to a individual with CF is not easy, CF is an isolating disease for all involved. There really is such a void when it comes to resources and support for spouses with CF. I hope as I share my story it will illustrate to others that you can take a tragedy and try to make something positive come out of it. 

The ensuing days and months after Ashley passed away were incredibly difficult and still are almost two years later, but I knew that I wanted to become active in the CF community and help in any way that I could. CF spouses are in a unique situation, and I think they can benefit from hearing about the experience of others like myself – it certainly would have been a great help to me if I had had it. Being as informed as possible about CF in general and being active in the management of your spouse’s health is incredibly important, something that I learned unfortunately a bit too late.

The one big regret that I have is that, while I was learning more about CF, I wish I had asked some of those important health questions sooner and pushed a little more. However, at the time I knew that Ashley knew more about CF than I did, and I always thought she’d be ok. I tried not to press her too much, perhaps I was also a bit afraid of knowing the answers to certain questions I had especially as I saw her begin to struggle a bit more. While it’s a regret I have, it’s also something I’ve learned to let go as unfortunately there is nothing I can do aside from sharing my experiences with others in hopes it can help someone else someday. I've fought hard to move forward with my life, as I know she'd want me to, and also knowing she'll be with me always, forever.

If you are reading this and are in a similar situation, I implore you to be persistent and ask those questions. Get involved. Ashley was forthcoming with me and had even agreed to allow me to come with her to future doctor’s appointments, but I think she had always felt like CF was her problem and wanted to deal with it herself, which meant refusing to let it govern her life or her relationships... that’s the type of remarkable person she was. As a partner of someone with CF, it’s incredibly important to be involved in the treatment process and to get informed as much as possible. And if you’re someone with CF, let your partner in and allow them to help. We want to support as much, and as best we can. Teamwork is vital to keeping everyone as healthy as possible. 

Staying involved in the Cystic Fibrosis community was also very important to me after Ashley’s passing, despite how difficult it was. I learned that people with CF have to deal with a lot of challenges on a daily basis. It was Ashley’s perseverance and zest for life that sparked something in me to help and do more. So together with Ashley’s family’s we started a non-profit organization called the Breathe for Bea Foundation.

                       
                                 

Our mission is to help make the lives of individuals and their families that are battling this life threatening disease more manageable by providing financial assistance and support, as well scholarships in her memory. We also provide hospital care packages to CF patients who have been admitted into the hospital for an extended stay and are hoping to also provide resources and tips based on our experiences. We hope that we can be a support to the CF population. 

Putting my time and energy into this Foundation really helped me through the grieving process. It allowed me to try and turn an event that was so incredibly heartbreaking, into something positive, by helping others with CF. Hearing from the people who we have helped thus far is incredibly rewarding, and I know Ashley would be so proud of what we are doing. It will never make up for her loss, but it’s fulfilling to know that we can help others who have also been affected by this terrible disease. 

CF MiniCon

I am really excited about the next #CFminicon on Aug 15th and I am so honored to be co chairing it with my friend Laima from LungStoryShort 

Getting a lung transplant can require a lot of preparation and planning. Whether you’re preparing, or have already had one, or just want to learn more about lung transplants this is the minicon for you.

For me living life in ‘limbo land’ and no longer being able to do the things I used to do has been quite an adjustment. As I adjust to my ‘new normals’ with my CF lungs I know a double lung transplant is in my future and I want to learn as much as I possibly can. Although transplant can be pretty daunting, I look forward to the day when my 'new normals' will be adding all the things back into my life that I miss with another pair of lungs that will be perfect for me when the time is right.

I love hearing stories of others and meeting people who are living life how it was intended to be lived with their new perfect lungs. Their stories give me hope and strength for when the time is right for me to embark on the transplant journey. Registration is live so go sign up now. 

https://cff.swoogo.com/minicontx

See you soon!! Breathe out Love! Xo❤️