All about Cystic Fibrosis

Hopes and dreams

By Élise Bouchard
Terrebonne, Quebec
SVB 2013

My name is Élise Bouchard; I’m 33 years old and I have cystic fibrosis. I was diagnosed at birth. I had my first operation 30 hours after I was born because my intestines were blocked with meconium and secretions caused by cystic fibrosis while I was still in my mother’s womb. I stayed in the hospital for several months, and without that operation, I wouldn’t be here today to tell my story.

The doctors told my parents that given the seriousness of this disease, they shouldn’t expect me to live very long since the median age of survival was barely 10 years at the time. However, they indicated that the situation could be controlled with drugs. I am the youngest of four children; the doctors recommended that my parents look after me the same way they looked after the others, but keep in mind that my lungs and intestines were more fragile.

My parents followed the doctors’ orders. I matured quickly because of the treatments and medications, knowing full well that this was for my own good and would help me stay alive. In spite of everything, I grew up like my brothers and sister. In grade school, things were normal apart from a few hospital visits, but nothing more. At the time, in my young girl’s heart, I felt I would be cured of this disease; I had hope.

Then came adolescence. The median age of survival was now between 25 and 29. I wasn’t cured yet, but I still had hope. I told myself: “If only the researchers would find drugs to prolong my life . . . I don’t think I’ll be around long enough to be cured, but at least I could live longer.” Granted, adolescence is hard for everyone. However, it was even harder for someone like me, who has cystic fibrosis. And that is when the disease got worse.

I had to be hospitalized for the first time when I was 13 years old for the removal of nasal polyps, which are common in people with cystic fibrosis. Then my lung infections and hospital stays became more frequent and the missed school days began to leave their mark, especially since I went to private school. Luckily, when I was 15, my doctors told me I could take my intravenous treatments at home using a pump in a waist pouch. My mother and I were trained by a nurse—it was new and exciting! I could attend school and undergo treatment at home instead of in the hospital. This wonderful invention opened up a new way of life for me. No more remedial classes on weekends to keep up with my classmates! Ever hopeful, I graduated from high school without any problems and enrolled in a nursing program in CEGEP.

My early adult years went smoothly; my condition was stable. I changed hospitals and was able to continue my home antibiotic treatments using a different technology—small vials that fit in my pocket! I took part in a few clinical drug trials, and since the results were positive in my case, my inhalation therapy was modified and became more effective, and I had slightly fewer lung infections.

A short while later, the median age of survival was pushed up to 30. There was still hope for me . . . hope that I would live even longer. The thoughts that circled in my mind were as follows: “The next step is lung transplantation. More and more are being performed and they are successful. When it’s my turn, I hope that lungs will be available for me because that will be my only chance of surviving. However, it’s all well and good to have new lungs, but that won’t heal the rest . . . There are no guarantees.”

Today, the median age of survival is over 40 years of age—and I’m still hoping. I lead an active life, while respecting my limitations. I work in a different field from the one in which I studied. I have to admit that it isn’t always easy to take time off work for health reasons. I’m passed over for promotions for a variety of reasons, but I know very well that my disease and repeated absences are largely responsible for these decisions. But in spite of everything, I’m independent; I live one day at a time and this suits me fine. I love life, and I thank heaven over and over that I’m still alive. I smile every day—it does me good and I feel alive.

One day I met François, an extraordinary man who learned to cope with my illness over time. He had so much faith in a future with me that he asked me to marry him a few months after we met. The next year, we were married. My hope for a rosy future is renewed every day, as I experience the highs and lows of the disease. I always smile—we always smile—in spite of my daily treatments, which take several hours a day, in spite of the days when I want to give up because I’m so tired. I smile and tell myself: “Don’t be silly, you’re still here . . . you have a partner who loves you and a nice house, and you’re surrounded by love. Don’t give up. You haven’t come all this way only to give up now. Life is beautiful. Make the most of it!” I inherited my will to live, to see the bright side of life, from my parents. I transformed it over the years in my own way. I now have hope for the future.

A few months ago, life gave me a precious gift: a beautiful baby boy, Éliott. Who would have believed it! I’m already very proud of him. Now I want to increase my hopes for a cure by millions and billions! I’m doing everything in my power to make things work out well.

Before my pregnancy, we had met with doctors from St-Luc Hospital who specialize in general obstetrics and high-risk pregnancies to find out about the risks and ensure that everything would go smoothly during the pregnancy. Since my health had been stable for many years, with an FEV1[i] of 65%, my doctors were confident that everything would be fine. We opted for insemination, and the third attempt was successful. We were elated, but terrified. It’s normal even for women in good health to be worried during their first pregnancy. In this case, however, it was my first pregnancy and I had cystic fibrosis. No one could have predicted how the pregnancy would go because there were no statistics. My husband was worried too, but he was with me every step of the way and encouraged me with all his love. The uncertainty was hard on him, too, but I was happy and that was the most important thing. Our decision was well thought out and had been planned for at least a year, so we were going to make the best of this pregnancy with all its ups and downs.

I was very closely monitored during my pregnancy— we had to go to the hospital every two weeks. In my thirteenth week, I became diabetic. I was losing weight instead of gaining, but I was being properly monitored and all went well, despite three superinfections. However, since I was accustomed to home IV therapy, the fact that I had to be hospitalized and placed in isolation because of an MRSA[ii] infection—no connection with the pregnancy—was very trying for me. Labour was induced at 37 weeks because I had another superinfection and I was starting to become exhausted. The birth went well, though, and I was even able to give birth naturally. I knew that everything would work out; I simply had faith in life.

The postnatal period was planned down to the smallest detail thanks to our relatives. Fatigue, night feeds, treatments the following morning and the need to plan our days—thank goodness I had all the help I wanted. My son is now five months old. I’m currently on intravenous therapy, my first since the birth. I was a little scared I wouldn’t make it, but everything turned out all right. Our helpers (my mother, my sister, my mother-in-law, my father-in-law—each has a shift) arrive in the morning and leave after lunch. My husband comes home at the end of the day and takes over. It’s real teamwork. All that fuss only so my little Éliott will have everything he needs. I’m the happiest woman in the world right now, despite all the hardship. This little creature is giving me more than I could ever have imagined. All of my efforts have been rewarded. I now know that a little boy will soon look me in the eyes and say, “I love you, Mommy.” Just hearing the word “Mommy” from his lips will bring tears to my eyes, I know it.

I want to live; I want to give my son hope. I want to see him take his first steps. I want to drive him to school on his first day. I want to comfort him when his heart is broken for the first time. I want to be there when he receives his diploma and stand by his side on his wedding day. And who knows, maybe I’ll even get to be a grandmother!

I have been fighting this disease, which so far is incurable, from the day I was born. Life is beautiful and everyone deserves to live it to the fullest. I’m 33 years old and I’m a mother . . . I’m 33 years old and I want to be a mother for a long, long time.

[i] FEV1: Forced expiratory volume per second

[ii] MRSA: Methicillin-resistant Staphylococcus aureus

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