Charles didn’t know what a venous thrombosis was, much less an embolism. It almost cost him his life.
In Europe, about 550,000 people suffer from venous thrombosis each year. It almost happened to Charles. At the age of 28, Charles suffered a thrombosis that developed into a pulmonary embolism following a long-haul flight.In 2018, I’m going to the United States by plane. You should know that I am 1.91 m tall. Getting off the planemy legs hurt but I’m not worried, given my size it seems normal to me” remembers Charles. “I was tired, then the Leg pains went up to my lungs. I didn’t know what pulmonary embolism or thrombosis was, so I still wasn’t suspicious.”. A few days later, Charles surrendered in Singapore (Asia), by plane for business reasons.When I landed, the pain had intensified. I was limping and I felt like I was being stabbed” says Charles. He goes to the hospital but has not taken out health insurance for the trip.
“My leg was paralyzed”
“The hospital didn’t want to do a scan on me, it would have been too expensive.” Charles returns to France. He is very thin, very pale and has difficulty breathing.Tying my shoelaces took as much effort as running 100 meters.“. The pain starts in the calf and goes up to the buttock.”It was a very sharp pain like after a big blow which then went up into the lung. I felt like I had a stitch in my side that hurt every time I moved.”
Misdiagnosis of “pneumonia”
At the emergency room, the doctors gave him an X-ray and diagnosed him with pneumonia, prescribing antibiotics and a visit to the general practitioner.In fact, I had had a pulmonary embolism for a week.. Embolism can be confused with pneumonia on an X-ray and only a CT scan can detect it effectively. I learned this later” he explains. After a week, “My tests were catastrophic. The GP is worried and immediately calls 15“. Back to the hospital. Charles spent 2 days in intensive care.”My leg had tripled in size by the time I got to the hospital, it was paralyzed.“. He was then sent to cardiology for a week for a pulmonary embolism and venous thrombosis in his right leg. Once the pulmonary embolism was under control, the challenge changed: to recover the functionality of his leg. He spent a week in vascular medicine at the Pompidou Hospital (Paris) to follow physiotherapy sessions. Between the first pains and the diagnosis of the thrombosis, almost 1 month had passed. “I was very lucky. I survived the delay in care.” The hard work begins. Charles goes to the physiotherapist three times a week for 3 and a half years to get his veins working again and get his blood circulation going again. It will take him 6 months to walk again without assistance (crutches).
An unexpected verdict after further examinations
Doctors gave him genetic tests and the verdict was: he had a very rare genetic disease, antithrombin 3 deficiency, which increases the risk of developing thrombosis. While the disease is well known, this specific mutation had not yet been medically listed. Antithrombin 3 is a protein that regulates coagulation, Charles is missing 45% of it, which means his blood is over-clotting. “I have a 50% chance of passing it on to my future children. But they won’t necessarily have to be treated until they have had a thrombotic episode like me. We’ll have to be vigilant.” How to live with it?I had to learn to reclaim my body. When I left the hospital, I was mentally shaken. I went through a period of professional decline. I had only 28 years old, I didn’t smoke, I didn’t drink and I was athletic. I certainly didn’t expect to have a health problem. Since then, I have had chronic pain and I wear support stockings every day. I am on lifelong anticoagulant treatment since my genetic factor is not treatable”.
Charles can still fly, but he must wear support stockings, drink plenty of water and stretch his legs. Every year, he goes to the Pompidou Hospital for a check-up. “I can no longer do certain activities such as those with a risk of falling (sliding sports) or involving frequent shocks such as contact sports, combat sports, with rackets, ball sports, running is also impossible due to chronic pain… but I can cycle, swim and walk“.
Thanks to Charles Riche for his testimony. Comments collected on June 15, 2022.