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28 Year Old - PE Recovery

Posted , 11 users are following.

lcn1988
lcn1988

Hi, I am a 28 year old male. Back in early march i had a very serious PE very suddenly which was then rooted to a DVT in my leg. However the cause of the DVT is has not been resolved by the doctors. I have been placed on a course of 5mg Apixaban for 6 months of which i have seen no ill effects and started to exercise again.

I just wanted to know if anyone knew the likelihood of me coming off the medication after 6 months or whether i will have to stay on these potentially for life?

As a very active/social male the meds are preventing me from enjoying a lot of social activiites. Just wanted to see if i need to prepare myself mentally for the fact this could become a life change rather than a short term.

0 likes, 36 replies

36 Replies

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  • steve_1966
    steve_1966 lcn1988

    Posted

    Hi, it's a difficult choice and strange that it ends up being one for the patient. Specialists don't seem to agree with the right way forward for young people with DVT's or PE's.

    My sons are a similar age to you and have both had two DVT's. One remains on Rivaroxaban and the other has just taken himself off as he was geetting side effects. 

    As a parent i wish he was staying on the medication as it seems that for our family it is a case of when we will clot again, rather than if we will. 

    It will,come down to how bad the side effects of the medication are compared to,your own view about your likliehood of clotting again.

    its good at you're exercising again. Both my sons are and I,meeting back to running etc.

    try to get genetically tested so you can understand why you had the PE's. 

    I found mine frightening and I really don't want another. The decision for me to be on lifetime medication was quite easy.

    • lcn1988
      lcn1988 steve_1966

      Posted

      Hi Steve,

      I didnt realise the option came down to the patient i thought that was taken out of my hands. It's good to get information about people of a similar age to me having this too.

      I completely understand from a parents perspective you would want that to happen, i imagine similar discussions with my parents if the choice was there. For me it might come down to doing the things i enjoy and having a better quality of life.

      I have had some blood tests on my last hospital visit that will also cover gentics too so again trying to cover all the bases.

      Thanks for your comment though has really helped and makes me think that i may have the chance to come off these.

    • steve_1966
      steve_1966 lcn1988

      Posted

      There doesn't appear to be consistency across the medical profession about how long to stay on the medication. My consultant and my son's consultant are not in agreement. 

      One son was put on warfarin for 6 months after his first DVT and then Rivaroxaban for life after his second one.

      My older son was put on warfarin for 3 months after his DVT and then Rivaroxaban for 3 months after his second one.

      I was given the choice of warfarin or Rivaroxaban for either six months or life after my PE (which we think came from a clot in my calf). I chose lifetime Rivaroxaban but I'm moving to Apixaban. 

      I can see your point about contact sports, it's good that your lungs have recovered so well - my PE's have added 5 minutes to my 5k run time (I'm just pleased that I can still say I have a 5k run time).

      There is a Facebook group for people who run after PE's which might be worth joining. There's not much info on there but if you're exercising to a good level again you may be able to pick up something there - a few of them are ultra marathoners etc.

      I must admit, in all the information I've read about the medication I'm on I've missed the bit about no alcohol... I've been drinking away quite merrily (a bit less than before) and it doesn't appear to be having a negative effect. I'll read the leaflet again... 🤔

  • ksun
    ksun lcn1988

    Posted

    I had my first PE over 3 years ago, initially in the hospital they put me on heparin and then put me on warafin.  I had one other occurance and have stayed on warafin.  I have to have my levels checked once a month and the dose is changed accordingly. When I started seeing a specialist after the first time it occured they did extensive testing to see if there was a genetic or other component that would continue to keep causing them to reoccur.  My size and my lifestyle (which I'm in the process of changing) is the reason for mine.  I have a friend that has the gene component and she will have to be on them for life, she takes a newer drug.  I recently asked about the newer drugs versus warafin, thinking maybe I should change, but I learned even though it is a pain to watch the vitamin K I take in and have my blood tested frequently, the side effects are minimal compared to the newer ones.  The most important thing that I learned which I now would never switch because of is, if I had an emergency and I was loosing blood they can quickly give me something to counter the blood thinner effects, but with the new drugs there is no counter medicine to be given.  I think this is really important for people to know when choosing the medicine they take.  I would definitely recommend talking about all your concerns with a specialist and if they can't answer for your circumstance find one who will.
    • lcn1988
      lcn1988 ksun

      Posted

      Due to my age the suggestion was for me not to be on Warfarin. Nearly 6 weeks into taking apixaban I have seen no ill effects and do not have to go for regular tests.

      I was talked through all the pros and cons around the different types of medication and felt the newer meds were a better choice for me.

      The only concern i have is if i can come off the medication after the 6 months as it is restricting me a little socially. As i play football at a reasonablly high level and ofcourse on blood thinners your told to avoid contact sports. Also i find that being only 28 years old the lifestyle of not being able to consume alcohol is a little frustrating as nowadays socialising is almost non-existent without it. But hey ho you crack on and enjoy life.

    • ksun
      ksun lcn1988

      Posted

      I hope you can fully get off the blood thinners so you can enjoy football and your life.  Good luck to you!
  • -.a-way_forward
    -.a-way_forward lcn1988

    Posted

    Try and find cause of the clot, or your body's tendency to clot.

    You've got plenty of time to be active & social.

  • terri39234
    terri39234 lcn1988

    Posted

    Hi Icn1988

    I went into hospital and discovered i have PE yesterday after a week of pain in ribs, chest and shoulder (all on the left side) and I am also only 27 year old female so to say i was scared was an understatement!

    How long was it until you was comfortable exercising again as i train 5 days a week usually and im wondering when its safe for me to do so again, onviously not now I'm in too much pain but just wondering how it was for you being similar age?

    Did you also find it near impossible to sleep? This is a real struggle for me right now and could really do with some advice

    Thanks

    • lcn1988
      lcn1988 terri39234

      Posted

      Hi

      Really sorry to hear about your PE hope your doing ok. I was told I hate wait around a month before exercise partly because they found my original clot was in the leg. So I started off swimming and cycling on a spinning bike.

      I'm now about 3 months into the recovery and I'm now doing 5 mile runs 3 times a week and going to the gym. I've learnt though no two cases to be the same with this so it's really hard to research it. As I'm the same I wanted to get back to exercising as quickly as I could.

      Erm initially I struggled with sleep but I think that was something in my medication. I'm now sleeping fine.

      Hoping this helps a bit

    • terri39234
      terri39234 lcn1988

      Posted

      That really does help thank you. Just bit hard to ascertain what to expect when everyones experiences differ
    • lcn1988
      lcn1988 terri39234

      Posted

      No problem I know exactly what you mean. I've sent you my email address as I don't look on here much anymore. Any more questions just let me know

    • laura2208
      laura2208 terri39234

      Posted

      Hi i was diagnosed monday with PE in my left lungs.. but the pain is all on my right side..chest,back shoulders makes me wonder if they got the lungs mixed up.

      I too am worried as father died of them and cancer..

      Having the grade 2 stocking ordered in july.

      No idea of do's and don'ts. Or time ill be off work

    • lcn1988
      lcn1988 laura2208

      Posted

      Hi

      How long was you in hospital? I was in about 4 days and got told everything after all my scans etc.

      I didn't get my stockings til about a month after.

      In terms of dos and donts I was told initially to take it easy and then ease myself back into normal life.

      I think barring drinking alcohol (due to my apixaban blood thinners) and playing football I'd like to think i'm back to normal.

      I learnt as I went along what to do and not.

      Most of it comes down to what if any damage happened to your lungs which may effect your breathing after.

      I've gone through lots of blood tests since to look for blood/clotting problems etc. I think they do that as a process of elimination. I think less than a week into it your doing the right thing looking into it. But from my experience 3 months since it gets easier

    • laura2208
      laura2208 lcn1988

      Posted

      Hi

      Well mine started with me having emergency appendix removal. I was put in iv anti biotics straight after surgery but suffered with temperatures and high blood pressure during hospital stay. On discharge i was sent home with nothing.. no stocking, no anti biotics or dvt injection which you are supposed to carry on with a week after surgery.

      Since ive been back to A&e 4 timeswith infections, pains etc. Then i caught flu so more anti biotics but pain in chest just got worse. Then monday just gone on another hospital visit and tests,scans found two clots in my left lung..although the pain i feel is in right side.

      I have normal stocking but i need to have the grade 2 which i will have to pay £16.80 for in july.

      I cant see when i will be back at work at this rate. I havent been in since 21st april and now i have to deal with this.

    • -.a-way_forward
      -.a-way_forward laura2208

      Posted

      you need to establish the sizes, numbers, locations and causes of your clots first
    • laura2208
      laura2208 -.a-way_forward

      Posted

      I was only checked and scanned by my lungs.

      I have two clots in my left lung.

      They would have originated from calf but i was not checked there as already in lungs.

      Im getting pains in my calfs tho.

      I had surgery plus was on contraceptive pill so they think that is the cause.

    • -.a-way_forward
      -.a-way_forward laura2208

      Posted

      i've had four recorded instances of clots in the last two years of different sizes and locations - i come from the Unprovoked VTE category. 

      I personally believe DVT & PE clots can come from anywhere along the pulmonary circuit including aorta and all its major systemic artery branches 

      I don't know about contraception provoked clots, but i guess they could occur where ever blood pumps. 

       

    • terri39234
      terri39234 -.a-way_forward

      Posted

      I dont think contraceptive pill can cause them but it may contribute because the hormone in the pill cancause thickening of the bloody. When i was diagnosed i was told straight away i needed to stop the pill but they suspected my clot came from long haul flights and i did singapore and malasia a month back
    • laura2208
      laura2208 terri39234

      Posted

      It wasent just pill.. i had surgery a month before and like i said they stopped all dvt injections and wear stocking from discharge later i have discovered injections shoukd have continued a week longer and stocking also longer while at home..

      This along with pill made it higher risk.. but not once did they suggest i stop my pill

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