Disponible en / Available in: Español
Daniel Rio’s letter
Cystic Fibrosis (CF) always comes me. 24 hours a day, 365 days a year. I am Daniel and I am 18 years old.
The CF is like a backpack that you carry on constantly. When you are more or less well, the backpack weighs somewhat less, but it still means two daily batches of one hour each of aerosols and respiratory physiotherapy. Nor should we forget the pancreatic enzyme replacement pills, Kreon for us, which I must manage and take with each meal: about 30 a day; plus vitamins, stomach protectors, inhalers…
Nutrition is an important part of our treatment. Eating as a child and a half when it is more or less good is possible, but… it becomes very uphill as soon as there is an infection or an antibiotic treatment, since it is accompanied with tiredness and lack of appetite. Who wouldn’t hate hypercaloric shakes if he had to drink at least two shakes a day throughout his life?
Physical exercise is also essential to keep all the muscles in tune and to have the strength to remove those viscous phlegm… Who among you would go to the gym with fever or after a week taking a simple Augmentine? Again, the CF does not give you respite and you have to get those forces and that determination from anywhere, since in the moments when we are worse it is when it is more important that we do more things, more treatment and more exercise to mobilize the mucus and expel it; and when it is more important that we eat better so as not to lose weight.
At first, when you are well, you do not understand why your parents insist that you do so many things. Mom, why do I have to do so much physio if I’m fine? “To continue this well,” is the answer. So there is no truce.
When you have a cold, an infection or a fever, things get complicated. The backpack gets heavier. What if that incessant cough appears and keeps you awake night after night for several days and leaves you completely exhausted? Then to the usual treatment antibiotics are added, more physiotherapy to take out more and better the accumulated mucus, more medical visits, even more shakes and more calories to eat… just when you are more tired and less hungry, but of course, the expense of energy is greater just for living, for breathing and if you do not recover it, lower the weight and, with it, the lung capacity.
And now, when you are admitted to the hospital, CF takes over your life …
Cystic Fibrosis is a disease that does not allow you to lower your guard. When you are well to prevent and when you are not so good to improve …
Do you know how many hours of my life I have spent doing physio and aerosols and I have deprived myself of resting, playing, enjoying, even studying? About 13,140 hours, which is 547 days or at least a year and a half of my life dedicated to the care of Cystic Fibrosis. It is said soon! Year and a half of a life of 18 years!
Still, I am positive and I would not like to leave you with a very bad taste. The CF, in many moments, allows us to make a fairly normalized life: with your classes at school, your extracurricular activities, enjoy friends…
In addition, since last June I take Symkevi, a new medication that is at the root of the Cystic Fibrosis problem and slows the evolution of the disease. I hope it helps me enough and can stop living to take care of me and take care of me to live.
Thank you for reading this reflection and for putting yourselves in my place.