My journey with 3 CF brothers
First off I want to say my heart goes out to ALL battling CF survivors and loved ones that were taken to soon! I had 3 brothers with CF, my oldest who received his wings 1 week after I was born, he was 3 years old. Then my youngest brother with CF got his wings right away after being born which I was only 1 yr old. So I don't have much memory of them only from what my mom has told me before she passed in 2016.
My brothers mean the world to me
My most memorable brother who is 1 yr older than me received his wings in 2019 at the age of 53. He was my rock, my inspiration in life, my fighter & my very BEST friend! Growing up I remember he was sick most of the time & lots of trips/stays at the hospital. He wanted to be like others so bad. He wanted to enjoy things like they did. As he got older his health got worse. I remember so much even when he made the double lung transplant list & getting his new lungs!
It was scary but oh my he was a new person once he had them. He was playing tackle football with his nephews and enjoying life as he wanted all his life! Toward the end of his life he started getting more sick again and was afraid to leave his apartment as he was afraid of getting sick from others.
Things started to turn for the worse
He stopped doing things as he always felt sick or had migraines. At this time he end up with a fungal on one of his lungs. Tried treating it with antibiotics with no luck. Only way was to have surgery to cut it out. His worse fear happened. He had complications with the surgery as the scar tissue from the transplant had attached to other organs in his body. He had to have a chest tube put in as there were leaks in his lungs and were not healing.
Talked about doing another surgery called a flap to take a muscle from his body to put over the leaks. My brother mind you had to be less than 100 lbs at this time. Never happened. He probably would not of made it due to his weight and health not being up to par. I and my son stayed at the hospital for almost 2 weeks straight hoping and praying things would get better but they didn't. His body started to shut down- my worse fear!
My brothers will always be in my heart
I knew I was losing my best friend but had to be his rock now like he was for me growing up. Not what I had wanted to see or happen but tried my best to stay strong for him. Unfortunately, he lost his battle and I had to say my goodbyes. Hardest day of my life! I still have all the great memories of us being together but sad due to we are unable to make more. I have always shown my support for my brothers and for CF by raising money or attending walks.
The importance of raising awareness for CF
Since he has passed I still feel the need to help others so I have created an annual motorcycle Ride/event (In memory of) to help raise money to help others who are suffering to give them a better life just like my brother! I know they are smiling down on me and helping me lead the way to help others. RIP my brothers- always in my heart and always have my love!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?