Tuesday, November 13, 2018

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 fiancĂ© 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. 

Wednesday, August 8, 2018

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. 


See you soon!! Breathe out Love! Xo❤️

Saturday, August 4, 2018

Nobody Fights Alone



There are approximately 70,000 children and young adults like myself world wide that have CF. We fight day in and day out to stay as healthy as possible, our fight makes us strong!

“Maybe life isn't about avoiding the bruises. Maybe it's about collecting the scars to prove you showed up for it."

I believe life is what you make it. So make sure you keep showing up for it time and time again. Don’t give up, get back up and keep trying! Life can be frustrating whether you have CF or not, we all have struggles. So show up, collect your scars and continue to give hope to others. Show them that if you can do it so can they, you just never know who will be watching. We are all fighters in our own way. Some of us just have to fight a lil bit harder. One thing I know for certain is we are all in this fight together...Nobody fights alone! Keep fighting! Breathe out Love! Xo❤️