“Look where I am, do not lose hope”, insists Alexandre Allain, transplanted lungs

Suffering from cystic fibrosis, Alexandre Allain saw his strength decline inexorably before he benefited from a double lung transplant on July 17, 2017. Now 26 years old, the Sarthois, who has just published a book on his career, will try Sunday morning to complete the 42.195 km of the Paris marathon. An extraordinary and oh so symbolic challenge on the occasion of World Organ Donation Day. Maintenance.

How do you feel on the eve of the marathon?

I can not wait to be there ! There is the excitement of finally being close to D-Day. I’ve been preparing for it for ten months, it’s a long time. At the same time, I am also a little apprehensive. This is my first marathon, I will discover new sensations, I obviously expect to suffer. It’s an opportunity to put my mind to the test and see what I’m really capable of.

Why embark on such a physical challenge?

Since my double transplant, I have already toured Europe with a Renault 6, then crossed the Atlantic by sail. In both cases to raise awareness about cystic fibrosis and organ donation. I was looking for a new challenge with a more sporty dimension and, this time, alone. The marathon is the main event of running. And when I learned that the one in Paris was taking place this year on the same day as World Organ Donation Day, it was obvious.

Is it perilous given your state of health?

Honestly, I don’t think it’s riskier than any other. The lungs are there, they are well hooked. I have recovered a good breathing capacity and I am supervised. It was more the preparation to resume sport that was difficult because my body was no longer used to it. I was accompanied by two sports coaches. I did interval training, long distances, climbs… It was hard but I gave myself the means by going to training even when I didn’t want to. At the start I only held 5 km. Now I am capable of much more. Being able to accompany friends while running without being excessively out of breath is great.

What do your loved ones think?

My father is no longer too worried. He is used to my projects and knows that I am well surrounded. And then he’d rather know me on a marathon than on a boat in the middle of the ocean! My friends support me. Some will take the start with me, just like the surgeon who operated on me for the transplant. It’s really touching.

You are becoming a symbol for a lot of people …

Yes, I know, but that’s the goal of my actions. I take on this inspiring side. Media coverage can be a burden, but I use it as an engine. To people who have been transplanted and are experiencing difficulties I want to tell them “I have been there too, but look where I am now, do not lose hope”. It is the same for people waiting for a transplant: “keep fighting, it will be fine”. Afterwards, of course, I do not water down the reality of a transplant, which is a very heavy operation. But, moving forward, positive messages are much more useful than statistics.

You have also chosen to recount your journey in a book, ” A breath of hope », Published on September 16 …

It was not my will at first. It was the Hugo Doc publishing house that suggested that I get started. I wondered about my legitimacy, I also wanted it to speak to anyone, suffering from an illness or not. Once convinced, I wrote the book in three to four months. I wanted to address different themes such as the difference vis-à-vis others. I also wanted to give keys to the sick. The path I have taken has not always been rosy. I did the exercise of confiding in myself while most of the time I spoke of my illness with modesty. It was not easy. There is a whole part that even my relatives and my best friends only discovered through this book.

What memories do you keep of July 17, 2017, the day of the transplant?

I didn’t want to be on the national waiting list until my sister’s wedding, scheduled for June 2017, had taken place. After that, I waited 30 days, which is very short for an organ donation, even if it was starting to get long. When the time comes, these are very strong feelings. We say to ourselves that we finally see the end of the tunnel, that we are going to get out of it. But there is also the fear of the unknown, the fear of operational risks, of convalescence. This transplant was vital for me. I think I wouldn’t have seen 2018 otherwise.

In your book, you also address your anonymous donor …

At first, I ignored it. These new lungs seemed to have always been a part of me. But, since preparing for the marathon, I think more of this deceased person. I tell myself that she could not live all her dreams and that it is thanks to her that I am here. There is a part of this project that is for her. I want to thank her and her family. This donation brought a lot of happiness, it is the most beautiful act of generosity. I will think about it strongly on Sunday.

What is the daily life of a person with cystic fibrosis in 2021?

These are hours of physiotherapy, aerosols, tube feeding at night, hospital stays, intravenous antibiotic cures… It is an invisible disease that does not leave any respite. Fortunately, it is better and better taken care of, there are new drugs. At some point we’re going to get out of it. For me the transplant has radically improved things, even if I am not cured. My life is not the same. I’ll almost forget I’m sick. The only reminder is how many medications I must continue to take, but they have always been part of my daily life.

You will run on Sunday under the colors of the Grégory Lemarchal association …

And I am very proud of it. Grégory Lemarchal was an icon. You have to say thank you. Without him and without the association created by his parents, we would not be as advanced in the management of cystic fibrosis today. They have also done a lot for the recognition of this genetic disease. All French people know the name, even though they often reduce it to lung disease or early death. Few people know, for example, that it also affects other organs, such as the pancreas. There is still a lot of work to be done.

What will your next projects be?

I am preparing another sporting challenge, even more ambitious, where I will be paid by partners. It will be unveiled in January 2022 for a deadline in September 2023. In parallel, I am setting up an audiovisual production company. I am especially not going to settle down. People are receptive. I got a lot of thanks after the book was published. I want to continue to spread messages of hope.