My 14 year old daughter had PE after long haul flight

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In July 2016 my daughter and I took a 12 hour flight and upon arrival she collapsed! We thought she was just feeling weak, so thought nothing of it! She kept complaining of shortness of breath and chest pressure and we thought it was a cold coming! 7 days later she starts perspiring and then collapses again with umcontrollable heart arrhythmia! Taken to hospital they did a CT scan with contrast and could see two clots in the entrance to her lungs! We could not believe this! A team of doctors including an haematologist started treating her with heparin injections and after 10 days in intensive care she was ok and treated with Rivaroxaban for 6 months. They performed various tests to find out the cause of this as they have never heard of a 14 year old healthy girl with PE! All tests came back negative! Upon our return to the UK, 2 months after her PE, Great Ormond Street Hospital started a long investigation and after one year found no underlying problem with my daughter and we still don’t know, apart from flight, what caused her PE! The anticoagulation was horrendous and she felt quite unwell and would bleed terribly during her periods, which was very scary! She has been psychologically scared as she is always scared of another PE! She was an ice skater and had to give it up, also devastating! I must say that since then she had issues with heart arrhythmia once and was admitted to hospital and no clue as to the reason of it! She now has issues with her breathing, lack of air, now and again, which is also worrying for all of us! The doctors, at the time, told me that part of her lung walls had collapsed due to the PE so it makes me think that this is causing her breathing capacity! It is a horrible thing to go through and I feel for everyone who has had a PE! We still do not have a cause for hers, which is even more terrifying but we try to live with it and deal with it on a daily basis! 

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  • Posted

    Hi Monicap

    My son aged 19 has had multiple pes in both lungs. It started with shortness of breath and pain in his shoulder. I thought it was muscular after a couple of days he went to Gp who said to go to A&E. After four days in hospital then released they said it was Pneumonia. He didn't improve so we took him back after advise of Gp. He was hospital to 2 1/2 weeks. They haven't found cause and we still don't know if he will be able be on Apixaban for life. He's doing OK he gets tired easily and still suffers with a tight chest. It's a scary time and often very little support. I hope your daughter continues to improve and get support x

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    • Posted

      Hi Jt2872,

      I am sorry to hear about your son! Every hospital visit is a struggle and I have to put my foot down! We are taking my daughter to hospital this afternoon as she is short of breath, muscle pain, lethargic and sleeping 14-15 hours a night, which is scaring me a lot! My heart is constantly tight with worry! Thank you for your comforting words! 

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    • Posted

      Spent 7 hours in hospital, D-Dimer negative, ECG and x-rays and luckily all good! We were advised to consult a pulmonologist to find out the reason for her being breathless! The story continues! I guess along PE sufferers go though similar paths! I really empathize with you all! 
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  • Posted

    That is unusual but my guess would be from the long plane ride. If she was stationary for so long. I'm not on blood thinners anymore either it's been almost a year since being off thinners and I worry every day I may get another one. There not 100% on how I got mine they think because I kicked a door 20 30 times but had no dvt. My bilateral pes where small I was told and did no damage. Some people depending how massive the pe or the persons body could take 6 12 or even 2 years to get back to normal. Is she still on thinners?

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    • Posted

      Hi! Thank you! Yes, I guess it was the plane ride! Agree with you! She is no longer on blood thinners! I guess some damage was caused to her lungs and she needs time to recover! It is a scary thing not knowing and it is always on the back of our minds! You are not alone!
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