I’d like to tell you the story of an extraordinary person. You will discover the surprising story of Michel who, despite his illness, which accompanies him from his tender age, can manage his enemy making sport, his favorite ally and making the impossible possible! An incredible lesson in life with a unique determination!
(Once upon a time …)
That night, I managed to sleep almost peacefully without having to get up to blow my nose. When I woke up, I was surprised to remember my dream. A rare thing because in general, I never remember it. I dreamed that my father had offered me, for my 13th birthday, a fantastic red bike of the Italian brand “Campagnolo”, one of those with 5 speeds, a real innovation at the time.
I was already awake when my mother came softly into my room and kissed me on the forehead. She said “Honey, it’s time to go, Dr. Verdier’s appointment is at 10:30.
After my ritual and indispensable preparations, I went to the kitchen where my mother had already prepared my breakfast.
My mother was already ready and my father was waiting for us in the car.
We arrived at the clinic 15 minutes before the appointment time. Sitting in a corner of the waiting room, there was a child much smaller than me with his mother waiting his turn.
“Mrs. Lopex, come in, the doctor is waiting for you,” the nurse said firmly.
My mother and father sat in front of the doctor and I by their side.
“Hello, as the nurse has already said, the results of the examinations have arrived. Now we can say for sure that Mickey’s disease has a name: Kartagener syndrome,” said the doctor, biting his lip.
“What do you mean, doctor?”, replied my mother in a trembling voice, as my father held her hand.
“This is a rare disease of 1 in 32,000 cases of genetic origin,” said the doctor brutally.
For me, it was like a kick in the belly. I started to sweat coldly, I felt like an iceberg was stuck in my stomach. I wanted to cry and scream.
“Bronchial dilatation, mandatory physiotherapy, life-long medication, oxygen therapy, aerosol and bronchi-dilators,” the doctor continued. Words that resonated in my head like a jackhammer. It was terrible, inexorable …
“It could happen, if it was really necessary, that a double transplantation of the heart and lungs would be required,” continued the doctor.
My mother squeezed my hand and looked at me, saying, “Honey, do not worry, we’ll always be here!”
While trying to keep a cool head, a thousand thoughts crossed my mind “But why was I sentenced to such a life at only 13 years old?”, I asked angrily.
The doctor, seeing the tension that had developed, declared: “We will do all that is necessary so that everything takes place under the best conditions.I invite you to make an appointment with the nurse to define the treatment that suits you best,” he continued.
“Hey young man, you know we need you and your collaboration and you’ll see that everything is going to be ok, force and courage!”, the doctor concluded. I nodded, waved and left the clinic, my parents followed.
The thought (and especially the fear of having to finish my days still young, perhaps with a bottle of oxygen in a wheelchair waiting for a transplant of the heart and lungs), that the slightest effort can to be transformed into a real test, destroyed me.
Ravaged by tears, I ran quickly to the car. Once back home, my parents hugged me in a vigorous embrace and they told me : “We will always be there!”
Michel Lopes is a hairdresser and was born in Paris, September 29, 1979. A few months after his birth, on the occasion of a visit to the pediatrician, he was diagnosed with arrhythmias and criticalities on his cardio-circulatory system. Everything was then confirmed by more in-depth exams a few days later. His childhood was punctuated by an exhausting medical pathway consisting of weekly series of visits to the ENT specialist, the pediatrician and mastoidectomy hospital procedures (to open and drain the mastoid ,to drain the pus and eliminate spongy tissue infected with acute mastoiditis). Very long and heavy antibiotic treatments. From his early years, Michel realized that unlike other people, he only had 4 senses, as the smell was nonexistent. He never had the pleasure of feeling a fragrance, an aroma or the smell of hot bread. Not knowing the meaning since birth, he has always tried to understand and imagine what it meant to smell.
Years went by and Michel got used to this abnormal state.
But what is Kartagener syndrome?
It is a rare genetic disease, one in 32,000 cases, characterized in the specific case of Mickey by:
- DDB (irreversible dilation of the bronchi) -> Cystic fibrosis cousin, because the symptoms are similar.
- Chronic bronchorrhea: abnormal secretion of thick mucus in the bronchi.
- Situs inversus (complete): inversion of the localization of the thorax-abdominal organs and viscera (the lungs, heart, stomach and spleen are on the right, while the liver and gallbladder are on the left).
- Serious cardiac damage (surgery was required to correct these congenital heart defects).
- Chronic nasal rhinitis: permanent and thick discharge, with very troublesome nasal obstruction and development of nasal polyposis (impression of cold with permanent nasal voice).
- No sense of smell.
- Chronic otitis.
- Hearing loss (initially, feeling of a blocked ear and progressive and intermittent pain that can lead to final hearing loss).
Concretely, this syndrome in everyday life is manifested as a great bronchitis with a persistent cough, especially during the day and the nose stuffy.
Michel learned to live with these problems. He was followed at the hospital Foch of Paris and more particularly by the department of pneumology (specialized in the cystic fibrosis and the DDB). The more time passed, the more he realized that even his sense of hearing began to deteriorate, little by little. Regular examinations confirmed this. But hearing aids can help a lot.
The following 5 years have been quite heavy: 2 mandatory aerosol treatments for very long periods associated with antibiotic treatments. In January 2014, he underwent a nasal polypectomy (surgical procedure for the removal of polyps in the nasal cavities).
In his daily life, he tries to lead a rather normal life with frequent physiotherapy sessions and a lifelong treatment of Bricanyl and Serevent.
As for the irreversible dilatation of the bronchi, it must be periodically checked because when a zone of the lungs is too dilated, it must be removed. Unfortunately, frequent bronchitis only worsen the situation, and surgery could be considered.
Learning to live also with this perspective, knowing that things can very quickly move in the wrong direction, allowed to appreciate the good results obtained : he learned to live more intensely the present moment.
SPORT was for Mickey his strength to fight the disease having, in addition to a mental benefits, a draining action for the lungs. It has become indispensable for him now!
Five years ago, he discovered running – running!
And like all the things he does, he is totally committed to it!
He began with 10 km, then with half marathon (just over 21,097 km) and finally with the marathon: 42,195 km.
These are challenges that allow him to mentally motivate himself. His strength and ability to reach them despite his “fragility” make him grow into an inexplicable force.
“Never give up” becomes the motto of his life.
Always with bright eyes, full of joy and gratitude, he said to me:
“It is thought that with my health, the distance of a marathon would seem impossible to reach. Imagine the tears of joy when I reached the finish line on my first marathon. My victory against this “fucking” disease!
But that’s not all, because it was the beginning of a long series! I embarked on an even more crazy challenge!
Two and a half years ago, I decided to overcome my water phobia and wanted to learn how to swim. A new challenge!
The goal was to register for the Triathlon (1500m swim, 40km bike ride and 10km running).
Challenge accomplished in 2018! “
As expected, Mickey has continued his challenges and here are some of the races he has competed in over the years:
– 1 triathlon of Deauville
– 1 Saintélyon (trail of 2100 m elevation gain, 81 km completed in 15h50min)
– 4 Marathons of Paris (personal record achieved in 4 hours and 35 minutes)
– 1 New York marathon
– 1 London marathon
– 12 semi-marathons (in the Paris region with a record of 1 hour and 51 minutes)
– 4 km of Paris
– 16 km (personal record achieved at the Foulées de Vincennes: 48 min and 44 sec)
He goes on to say:
“If one thought it should be physically impossible for me to go that far, at every step, I am convinced of the opposite. I have always had the character of a fighter and that fortunately gives me the strength to move forward.
My motto is: ANYTHING IS POSSIBLE! NEVER GIVE UP (nothing is impossible, never give up!) “
Given his state of “complete situs inversus” (the heart is on the right and the other organs reversed) with each radiology or computed tomography, he is always obliged to point out that he has inverted organs, otherwise doctors make several times the scan and watch the radios convinced that they are wrong.
“During specific medical visits to general practitioners, I must always warn them, otherwise they start with the stethoscope to move quickly up and down, from right to left and have funny smiles.
I like to see the expression when a friend puts his hand on the right side of my chest and feels the heartbeat. I often say that I am one of the few people who can kiss someone I love and at the same time be HEART against HEART. But who can boast of having such a thing?”
As you can see from the pictures, Michel is a great person who has managed his illness with dignity. He was able to overcome this state of extreme difficulty and realized that “step by step” these sad and tearful thoughts lost more and more importance. He discovered that the race made him feel free and pushed him further and further away from the disease. He began to enjoy his environment: the song of birds, the beauty of lawns covered with dew in the early hours of the morning, the hammering of the pic-vert …
How many times has he wondered “Will I be able to reach the end?” The more time passes, the more he realizes that challenges take on another flavor.
Strength, courage and determination form are a threesome that accompany him in his fight. For the last five years, he is also supported in it by the presence of a beautiful person who accompanies him in all that he does with love, without ever separating from him.
Thank you, Mickey, for giving me the opportunity to tell your story!