All about Cystic Fibrosis

Life goes on!

From SVB2017

By Odile Lefrançois
Montreal (Quebec)

Seventeen years ago, a little girl was born. It could’ve been any common story, only this one wasn’t. When two days old only, the little girl had to be operated because her digestive system didn’t work properly. First sign to the doctors, they made some tests to confirm their first hypothesis and brought a name to her parents that they did not know before: cystic fibrosis.

Today, many years later, the small scar is still there on my stomach, among others. That of my feeding plug, which artificially fed me for years. Those of my many antibiotic perfusions, which dotted my arms in my childhood. That of my old catheter, higher up, when my veins weren’t enough for perfusions. That of my lung transplant, when everything else wasn’t enough.

I was thirteen years old when my state started deteriorating. Even with daily treatment, countless vitamins, antibiotics and others, despite regular visits to the cystic fibrosis clinic, I had to spend some time hospitalized at Sainte-Justine Hospital. I left less than a month later, reassured about my health.

Only a year went by between that moment and when I started sleeping every night with oxygen. For the first time, we were talking about greater measures, more important than simple medication. The word transplant was added to my vocabulary, and while I was conscious of the necessity to resort to an operation someday, I didn’t expect it to happen so soon.

That same year, I was in class for only two of the ten months in 9th grade. Then, I had the precious help of an amazing university student even when I didn’t see the importance anymore. I went at least half a day to the hospital every week, to make sure my state didn’t worsen too fast. I saw a friend, amazing also, and the rest of the time I could only sleep, exhausted.

It is difficult to realize the energy that breathing requires. At the end of my school year, I kept my oxygen all day, totally dependent on these little O2 molecules. I never left it and, despite this help, I still had difficulty breathing. Between long coughing fits and rest periods, in little time I was drained at the least effort.

Parallel to that, my appetite was ruined by the enormous quantities of medication I was administered each day while I needed more calories than ever. With a feeding device that I had since I was eleven years old, I could now have access to a greater nutritional value. In total, I received 4,000 calories daily, less those that I vomited. I still had to gain two kilos if I wanted to be accepted on the waiting list for a transplant.

My 10th grade just didn’t happen. I followed some classes, tried to stay up to date, but I didn’t have the energy anymore. I watched many series, of which there are many seasons. I read a lot also, many novels, but I was quickly tired. During the day, I did everything to stand up the least, and I took many naps, not even going back to my bed to sleep.

In the beginning of the month of December, I started using a new machine to help me breathe at night. That way, I could have many hours, each night, where I would have real rest. In the beginning, I wasn’t a fan of this big mask, but I quickly accepted its presence. Sometime after, I was in a hurry to wear it, putting it as soon as possible, and always waiting as much as possible to take it off.

I had become evident: breathing by myself was now a difficult task to accomplish. At that time, my lungs were working at less than 20%. It was impossible to know how low I had come down to because, under that limit, measures aren’t accurate enough to calculate pulmonary capacity. Nevertheless, I knew it had worsened to far less.

After the Holidays, I was admitted for another stay at the hospital. That time, my status had deteriorated too quickly, to a point where it was worrying. Climbing stairs, or simply walking down the hall, everything exhausted me alarmingly. I liked reading so much, but I couldn’t concentrate on a page for more than a few seconds. The words, the ideas, everything was mixed up in my head.

My body had, more and more, become resistant to normal antibiotics and I had to test some new, less traditional ones… Some hadn’t been used for many years, due to their sides effects that were too numerous and important. Regardless, they had very good results on me and, by monitoring them, we avoided any complication.

After two months in a normal unit, I was transferred to intensive care at the hospital. We couldn’t wait anymore, my doctors completed all the steps necessary and I was admitted to the emergency transplant list, passing all others. From then, I only waited a short time, even though it felt like eternity.

I have very little memories of that period, drugged by medications I received. Tubes in my small hand veins would burst after only a few hours, with pain coming with it. The book purchased by my parents, placed against the sink, stayed new and abandoned, words being confused in my eyes. These short instants, awoken in the middle of the night in the hospital’s relative silence, which I hadn’t left in two months. My two younger sisters’ eyes were full of incomprehension and sometimes breaking tears.

I was transferred again 15 days later to an adult hospital. I had imagined that it would be a great change, but I was barely conscious enough to notice the difference. At one place or another, my main activities were to sleep, stare at the ceiling and talk out loud without making sense. The day after I arrived, my surgeon came to tell me he had lungs for me, and it must be the only thing I remember that well.

According to my attending physicians, two weeks later, I would have been dead.

I spent a little more than a month hospitalized before finally going home. I had to relearn everything; talking and eating despite my irritated throat due to intubation, to walk despite my leg muscles having suffered from all this time without exercise, to socialize even though my only company for moths was my family and some rare friends. But I succeeded, and fully enjoyed my summer before going back to a normal life.

Two years after having left them, I was back on school benches. Like any normal teenager, I worried about my grades in math, complained about some teachers and argued for anything for reasons I forget. I am only a year late compared to my friends, but I also made some new connections. Next year, after getting my high school diploma, I will join them for college studies, in a field that I am passionate about.

Of course, I still take many medications to avoid my body rejecting these new lungs, and I have to take care of my health as I have no or almost no immune system. Having come all this way, I think it is very little for me to be here. I also started reading again, losing a lot of time watching television and procrastinating with homework until having no choice left but to do them.

As we say, life goes on!

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