Thrombosis testimonial: “I felt like I was being stabbed”

At 28, Charles made a thrombosis that progresses to pulmonary embolism following a long-haul flight. “In 2018, I am going to the United States by plane. You must know that I am 1.91m tall. Leaving the planemy legs hurt but I’m not worried, Given my height, it seems normal to me.Charles recalls.I was tired, then the leg pain has gone up into the lungs. I didn’t know what pulmonary embolism or thrombosis was, so I still didn’t get suspicious”. A few days later, Charles went to Singapore (Asia), by plane for professional reasons. “When I landed, the pains had intensified. I was limping and felt like I was being stabbed“says Charles. 2 days later, he goes to the hospital but has not taken out health insurance for the trip.”The hospital didn’t want me to have a CT scan, it would have cost too much.” 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 from the calf and goes up in the buttocks. “It was a very sharp pain like after a big blow that then goes up in the lung. I felt like I had a Side stitch which made me suffer as soon as I moved.”

“My leg had tripled in size, it was paralyzed”

To emergencies, doctors give him an x-ray and diagnose pneumonia, prescribe him antibiotics and a visit to the general practitioner. “In fact, it had been a week since I had a developed pulmonary embolism. The embolism can get confused with pneumonia on an x-ray and only a scanner can detect it effectively. I found out later” he explains. After a week, “my analyzes were catastrophic. The GP is worried and immediately calls 15“. Back to the hospital. Charles spends 2 days in intensive care. “My leg had tripled in size when I got to the hospital, it was paralyzed“. It is then sent to cardiology for a week for a pulmonary embolism and venous thrombosis in the right leg. Once the pulmonary embolism is under control, the stakes change: 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 thrombosis, almost 1 month passed. “I have been very lucky. I survived the backlog.” The hard work begins. Charles goes to the physiotherapist three times a week for 3 and a half years to reactivate the veins and restart the circulation of the blood. He will put 6 months before walking again without assistance (crutches).

“I wear compression stockings every day”

The doctors make him pass genetic tests and the verdict is in: he has a very rare genetic disease, antithrombin 3 deficiency, which increases the risk of developing thrombosis. If the disease is well known, this specific mutation was not yet listed medically. Antithrombin 3 is a protein that regulates coagulation, Charles lacks 45% of it, which implies over-clotting of his blood. “I have a 50% chance of transmitting it to my future children. But they will not necessarily have to be on treatment until they have had a thrombotic episode like me. We will have to be vigilant”.

He has a very rare genetic disease.

How to live with? “I had to learn to reclaim my body. When I left the hospital, I was mentally shaken. I experienced a period of professional hollow. I only had 28 years old, I didn’t smoke, I didn’t drink and I was athletic. I certainly did not expect to have a health problem. Since then, I have chronic pain and I wear compression stockings every day. I am lifelong anticoagulant therapy since my genetic factor is not treatable”. Charles can still fly but he must wear compression stockings, drink plenty of water and stretch his legs. Every year, he goes to the Pompidou Hospital for a check-up appointment. “I can no longer practice certain activities such as those at risk of falling (gliding sports) or involving frequent shocks such as contact sports, combat sports, racket sports, ball sports, running is also impossible due to chronic pain… but I can ride a bike, swimming and walking“.

Thanks to Charles Riche for his testimony. Interview on June 15, 2022.