20 year old son with DVT and pulmonary embolisms in both lungs

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5 months ago my 20 year old son fell while skateboarding.  It took a month for the drs to find a DVT and pulmonary embolisms. He is currently on Eloquis twice a day. He is so exhausted that he barely gets out of bed. He lays in his bedroom watching TV, has zero energy, headaches and some shortness of breath. Is this normal?  I keep thinking he’s possibly depressed and he says he’s just exhausted. He sees a primary care dr, but I’m wondering if he needs to see a pulmonary dr. What are your thoughts and experiences?  Thanks in advance for your idea. 

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10 Replies

  • Posted

    I was exhausted for months also. It was a combination of recovery, and the medication. I'm a year and a half out and just starting to feel normal again. The Eliquis also made me tired. I switched to Savaysa and it helped.

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  • Posted

    Shortness of breath is normal. I was on eliquis for 6 months from bilateral pes in November 2016. Eliquis made me tired my chest hurt all the time. My back. It is typical for people who have had pes to get depressed and have anxiety. Maybe your pcp can give him something for that. But he needs to get up and move. It is the best thing for him. It take some people 6 months, a year or even longer to recover. It took me 6 months. Walking as hard as it is he should try. Being stationary for so long is not good for the body. His body has experienced a traumatic event but he should try and walk around the house to get strength back. If he's having to many side effects to eliquis maybe you can ask your doctor for xerelto. I would see a pulmonologist if I was him too.

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  • Posted

    Hi julie,

    I had a clot(s) in the lung after a hip replacement, which left lung damage and a question mark on my heart. I was put on apixaban (eliquis) for 3 months but, it made me so ill after a month I stopped taking it. Headaches, feeling sick, very bad anxiety.

    As your son was not diagnosed for a month the clots may have done slightly more damage to his lungs even his heart which in turn would make him tired. I know it is hard but he does need to be active, it keeps the blood flowing.

    He is so young to have to go through this, I really hope he has a quick recovery.

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  • Posted

    The headaches and anxiety I experienced on Eliquis were unbearable. Also it didn’t help the symptoms of the PEs at all. My chest pains, breathlessness and palpitations were horrendous and I am convinced they were worse. Ask to change medication it isn’t the best of the anticoagulants.
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  • Posted

    I didn’t find much knowledge anywhere in the medical arena - PEs don’t seem to be owned by anybody, so no-one seems to collate any information. Don’t get me wrong - the care was good, just every question I asked seemed like a new one to them.

    Exercise will help enormously, little and often but don’t overdo it. Depression is possible and not getting out will amplify that. 

    Also, my first anticoagulant didn’t suit me (Rivaroxiban), switch to warfarin an improvement. 

    Lastly, if you are in the UK, the current hot weather will likely be making the breathing harder. Get him to go somewhere a/c, it will help.

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  • Posted

    Hi Julie,

    Sounds normal, I had the same symptoms even worse... my sinus would be blocked to the point where I had to get surgery to flush them out. Remember he can't be doing any hectic physical exercises, he can take short walk but anything hectic will put pressure on his lungs. I couldn't exercise for the 6 months I was on treatment. I had depression and anxiety and I was in denial about it, he could be going through the same thing. If he likes reading, get him a book by Joseph Murphy "power of your subconscious mind. It helped me deal with the depression I had. He does need to rest, but also keep his mind busy. Maybe get a hobby he can do with his hands.

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  • Posted

    Please get him to someone like a vascular surgeon who specializes in this. Or a a pulmonologist as those are more likely to be practicing where you live. I am on coumadin and I had to lungs with clots and a DVT in my groin 19 months ago and had a wonderful regular doctor but I needed more and after 4 months of been under this vascular surgeons, I am now being able to travel and when I come back from Israel the end of October he will evaluate me again, do more scans on my leg just to be sure and will probably take me off of Coumadin. I so feel for your son
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  • Posted

    Julie, I forgot to say that I am also 74 and was nearly 73 when this happened. Coumadin has worked very very well for me but you have to monitor it very closely but it is worth it. But please tell him that even though he is tired to at least walk around the house to keep his legs going so his blood will circulate. And he also needs to drink a lot of water ,a lot, because that helps thin your blood. I was depressed also but I was also on a high because I did not die. I have been a long-distance Walker and had done things like the 500-mile Camino de Santiago by myself, had walked across England three times and so on and so on. and I tried to walk to my mailbox and stood up there and cried until my husband could come and help me back, to the house a distance of about a hundred feet. And this was about a month after my PEs. But tell him to hang in there and the more physical things he can do the better his mental state will be. My doctor put me on an anti-anxiety medicine and said that they put all of their patients on in an anti-anxiety medicine who had these clots because everyone is scared and rightfully so. Please let me know how he does.
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  • Posted

    Thank you everyone for your support and kind words. I really appreciate it. Zach is going to the dr this next week and he is going to run tests on his lungs and heart to make sure there isn’t damage. I’m sure there is a lot of worry and maybe it will ease Zach’s mind if we get good news. If not, then at least we know and can deal with it. I wish you all a full recovery and good health.  I will let you know what we find out. XO
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    • Posted

      I hope and pray that there is no damage to either. If he is having another CS Scan it will show if the clots are gone or not and the heart function test will do the same. My prayer for you and your precious son is that both will show no damage and what he is experiencing is normal healing. I do hope that he will began to move around more and keep that blood flowing!
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