My name is Martina, I am 38 years old, suffering from birth from a “rare” genetic disease called cystic fibrosis. I have always had to deal with long inflammations and lung infections due to this disease, which causes an excess of mucus in the lungs that often becomes infected causing even severe pneumonia at worst.
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Cystic fibrosis, what it is and what are the drugs to control symptoms
by Maria Teresa Bradascio
After a long path of illness, at the age of 31, in 2016, I started my path towards bi-lung transplantation; after having undergone a whole series of tests aimed at finding out if I was suitable for such an intervention, I was put on the transplant list and then I had to wait for four years for the call, which coincided rightly with the first wave of Covid in Italy . I was operated on May 22, 2020 with the reopening of the operating rooms that had been temporarily closed due to the pandemic.
Two years in bed
After the surgery I had a lot of problems “getting back on my feet”, I had spent the last two years practically in bed, in pain therapy with fixed morphine, as well as being treated for cystic fibrosis, with continuous antibiotic infusions for all four years of waiting, and forced parenteral nutrition for 12 hours a day for the last two years of waiting. I was also addicted to oxygen and NIV, b-pap, which later became infamous for Covid cases, which I used all day at high flow to allow me to breathe while still.
And then, Covid arrived
I had finally got my life back in my hand, after very hard months after the transplant in which I literally had to relearn how to move, walk, redo all the muscles that were non-existent, re-train myself daily for body and breath. I started working again, not in the same place where I had worked before, but I liked a new challenge! And finally I had the chance to take my dog back with me, to start going out with friends again, to even organize a trip in the summer of 2021 … in short, things seemed to normalize, when Covid arrived for me too. …
My dog, an incentive to do better and more
Out of the disease I am a person who loves traveling very much, and who has been lucky enough to be able to do it often despite physical difficulties. But I also love reading, writing, taking long walks in the mountains with my dog called Breath, in honor of the shortness of breath that must be found for the things you love to do. He has always been a bit of my spur to try to do better and more, to train even when I didn’t feel like it, and he always kept my morale high, in the hope of being able to embrace him and bring him back home with me (in this moment is entrusted to the care of a friend of mine because I do not have the possibility to keep it with me due to my health situation).
33%, that’s the breath I have left
Lately, after the discovery of the rejection in March of this year, I opened a facebook page. It is called 33%, it is the number of lung capacity that I have left after the covid tsunami and with which I have to “get by” by re-learning to live at low gear. It is a kind of diary that I am keeping on my difficulties, small victories, and my new daily life.
Cystic fibrosis: a possible personalized cure from stem cells
by Valentina Guglielmo
