CF Workout Warrior
May 2020
Sebastião Hibon

Athlete Name: Sebastião Hibon

Tell us a little about yourself

I’m Sebastião, I’m 28 and I was born with cystic fibrosis.

I was diagnosed at one and a half years old and until I was 16 I lived well, without any major problems (besides some infections from time to time, treated with IV antibiotics), and much of that I give to my incredible parents who did everything to ensure I lived a normal and active life, doing all my therapies right, taking all the medicines every single day and practicing lots of physical exercise without feeling the burden of the disease.

An active healthy life was the main reason for my parents to move from the city to the coast side when I was a child. My Dad has always been very active and practiced lots of sports. Naturally, I felt attracted to those same sports – surf, tennis, snowboard, ridding the bicycle – and some more to add: skating, swimming, basketball, yoga, and many many more.

"For me, exercise was never an obligation. In fact, it was always (and still is) one of my greatest pleasures, one of the things I love the most."

For me, exercise was never an obligation. In fact, it was always (and still is) one of my greatest pleasures, one of the things I love the most.

When I turned 16, CF started to gain more expression in my life. That’s when I had my first real threatening and scary episode of hemoptises. Since that, I was forced to slow down a little. Physical exercise was starting to become a risk, and the fear of making too much effort was becoming a reality. I didn’t stop practicing sports, but gradually I had to adapt and push less and less as the years went by. From that first episode of terror and the consequent decrease in activity, infections became more frequent as my lung cleansing was compromised.

6 years ago I had an even more serious and very dangerous episode that required immediate surgery. From then, my health and lung condition were never the same. And 2 years ago, with a similar episode, things got even uglier and I was forced to get into the transplant waiting list. Balancing the need to stay active (because of my disease) and to be in shape for the transplant with the threat that exercising represented to my lungs was very hard. I had to put all sports on hold and to find simple and safer ways for staying active, so I mostly went on small walks by the ocean, which made me feel happy.

Luckily, last year I received a Double Lung Transplant! I’m very grateful for this beautiful opportunity to be born again!

However, a Double Lung Transplant isn’t easy and definitely not simple!.. An extremely complex procedure with a tough recovery. Intubation, IVs, some broken bones, 6 chest tubes, bronchoscopies, lots of daily exams, rehab (my favorite part and a crucial part of the recovery!), everyday half a hundred medicines, extreme food/hygiene cares, drugs’ side effects, and the list goes on…

I’ve had some post-transplant complications too. I had 2 rejections and I’m struggling with a bronchial stenosis which still prevents me from breathing well.

Tennis is one of my biggest passions and in the middle of the mist, I managed to get back on court and playing tennis as soon as I could and as often as possible too.

I didn’t grab a tennis racquet since a year and a half before the transplant (except in my living room, just to feel the love for the sport in my hands!). I stepped on the court just 2 months after the surgery (not actually playing at that time but still…) !!! Can’t even express the happiness I felt!!!

One of the things that gave me strength to go ahead with my Double Lung Transplant (besides saving my life) was to think about all the things I would be able to do after it – and getting back to my sports was a big part of that! I never needed motivation for exercising, the exercise itself has always been the motivator for me!

I’m still fighting post-transplant barriers and dealing with some transplant complications, having a hard time breathing every time I do any kind of physical activity, but I am giving absolutely ALL to face the immense overwhelming challenges life throws at me, always with the support of my loved ones and the CF/Transplant teams, and with a huge passion for life all along! What gives me strength to play tennis is also the passion that I have for it. I’m having a blast on court!

Now my future goals are to continue to be happy, to be healthy and to have the energy to enjoy time with my loved ones, to do the things I love, to make many more meaningful future projects and to practice sports limitless!

CF manifests itself in many different ways across patients, and many times there are no exact answers to how it will evolve in each person. But one thing I could control was my response to it, my determination, perseverance, faith, courage, and my will to do, to be active, and even more importantly, to be happy! In my experience, that is what plays the biggest role in a life with CF and I’m 100% sure that if I didn’t have this attitude, I wouldn’t be here right now! Our lives impose us all an endless cycle of recoveries, and it’s game over when we can’t do so. Movement is the keyword to start and keep going the full process of recovery and therefore leading us to live a healthy and happy life !

Beside my disease and my double lung transplant, I’m just a compassionate, happy, peaceful soul, who enjoys life to the fullest and is driven by love and creativity.

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