Pulmonary embolism after care😢

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Hi, I am generally fit in my 50s and been travelling for six months and now I have a PE, 4 weeks on.

My doctors give me little information and I feel a total nuisance so I am hoping someone on here can assist or share similar problems. 

I have been on blood thinners for 4 weeks, initially the pain went but now it has gradually returned.  Not horrendous just constant. Has anyone had similar experience?

many thanks 

ps 

i intend getting on with my amazing life and look forward to hearing from you.

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  • Posted

    Hello there

    I had a large saddle P/E just over a year ago after a long haul flight.  I'm afraid to say that I still have chest discomfort and slight pain in the leg where the original DVT was....also the affected leg still swells.  From what I have managed to understand, (mainly for the experiences of others on sites like this), it is quite usual for this to happen.  The doctors that I have seen seem very dismissive of this - their attitude being...'just keep taking the tablets!'.  Will you be a 'lifer' on the thinners?

    Good luck with your travels

    Alex x

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    • Posted

      Hey, hi thanks for responding.

      They never found another site where it may have originated from, not sure if that is good or bad. 

      I am on thinners for 6 months. I agree with you re Drs attitude, just take the tablets!  I have resorted to Google for advice on exercise etc  not a good move. 

      I am 4 weeks in and felt better 2 weeks ago, change of tablets and now have side, back discomfort, muzzy head most of the time. I wondered if anyone else found it got better and worse?  I am concerned re any underlying factors as no further checks have been done since the CT scan, ultrasound and X Ray that I had done on diagnosis abroad? 

      I know we are lucky it was found. life is too good to mope for long. 

      Good luck to you too, are you on pills for life?

       

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  • Posted

    In my experience if you only have 1 PE you will be on blood thinning tablets for 6 months, have another and then it is life.  There are a few different tablets, Warfarin which has been about a long time and has to be regularly checked and monitored, Rivaroxaban with no checks or antidotes but for me had a number of side effects, regular nose bleeds and heartburn. Have now been on Apixaban for 2 months with no side effects to date. Chest Pain can be off and on with visions of heart attacks etc, but this I think is partly in the mind.  My PE started off in my calf of the left leg and I get more worried when pain is there. Just get on with life and keep smiling plus "taking the tablets", quite a few would like to do this if you know what I Mean.
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    • Posted

      Hi, thanks for your comments, especially side effects. I also took Rivaroxaban but was always dizzy so changed to Pradaxa (hark at me talking tablets!!)

      cant believe how good it is to talk to other people in same boat.

      Lack of sleep as it can be uncomfortable plays with emotions on occasion but life is too good to worry.

      Thanks again, keep popping the pills.

      If anyone is thinking of joining this I recommend it.

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  • Posted

    Hi again, very interested to hear your comment re feelings of dizziness when on Rivaroxaban.  I'm a lifer on thinners and changed about 3 months ago from Warfarin to Rivaroxaban.  I had my 6 month check up last week, (only 7 months late!!), and mentioned to the specialist about being dizzy and lightheaded all the time only to be told that it is not a normal side effect of this medication.  It's funny that quite a few people seem to experience it tho.  It seems we are very much on out own with P/E's.

    Alex x 

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    • Posted

      Yes, my dizziness was quite bad, it was not muzzy head which I have a bit now, this side effect did not show itself for the first three weeks.  I was with the Dr when he looked it up and it was shown as a KNOWN problem!!  I did find drinking a lot of water helped reduce symptoms.

      Can I ask why you are on them for life?... I assume you have seen a specialist?  I have not been referred at all since being home.  My GP had limited specialist knowledge on the subject, a quick google and that told her the dosage.

       I mean that tongue in cheek but it was a case of looking on the NHS website for GPs.

      I find it interesting to know that a lot of people are being  advised the same vague info as I am given. 

       

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    • Posted

      Hi

      There is such a lot of conflicting info us clotties have to deal with...its quite infuriating!  I looked up the side effects of Rivaroxaban myself and it clearly said dizziness.  It was a respiratory consultant who said it was not a normal side effect....so who knows!!!  The dizziness has caused me to lose my balance a few times...I fell into the bath once....fortunatley it was empty at the time....tee hee.  I'm a 'lifer' cos I had a DVT about 20+ years ago, previous to the DVT+P/E a year ago and I also had cancer about 10 years ago so they reckon I would always be at risk if not on thinners permanently.  I guess popping a pill once a day is better than the possible alternative!

      Alex x

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    • Posted

      Hi Alex, Hell you have been through it.. Suddenly my aches and pains are fading. ¬†No effort in popping a pill or two is there. ¬†I have just read that Pradaxa was banned in the US, I may have to request a change or stop readingūü§ź ūüôą

      i am not sure if the strength of your dizziness is exceptable.  My GP did say he would send feed back on my reaction to it. There surely must be alternatives?

       

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  • Posted

    From what I can understand Warfarin was one of the only drugs they could use for these conditions and I understand it is becoming costly in time due to all the monitoring it needs. I was told it was not so long ago that Rivaroxaban and Apixaban where approved for use, but that monitoring of side effects would have to be done for a time yet before fully approved. I know nothing of Pradaxa.  I must admit with Rivaroxaban I did have a couple of experiences of being light headed, but put that down to tablets associated with my Prostate, so who knows.

    The one thing that does concern me is do all Doctors feed back info on reactions to new drugs otherwise we could all be at risk even when driving with some side effects that may exist.

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    • Posted

      My locum Dr said he would report my findings. Pradaxa was apparently an expensive drug to use, I stupidly googled this medication and won't make that mistake again. Ignorance can be bliss.

      So little info and no back up at all. I'm grateful hearing your experiences, thankyou. 

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  • Posted

    I had a PE after cervical fusion - which apparently is very rare. But they didn't know where the clot came from either. My father passed away from a PE after surgery too so what a shock to be in the same scenario 25 years later! I had every genetic test done for  PE and all were negative.

    ‚ÄčAfter the few few weeks I felt much better. But then¬†symptoms started up but they were different.¬†Shortness of breath was persistant for 5 months as was pain in my chest.¬†It just came out of the blue.¬†Finally now that has pretty much subsided. Don't have all my energy as of yet but that is coming back. I just had a VQ scan and all the emboli are gone!

    So it does take time to feel better.

    ‚ÄčI see¬†a pulmonologist every month and a hematologist every month.My care has been excellent. I get my blood checked once a month.¬†I think it is important to be proactive and if you don't feel like you are getting the care you need then try to see another doctor. I had another CT scan at three months and as I was still having issues was sent for a¬†VQ scan.

    ‚ÄčMy pulmonologist told me there is usually some permanent damage but it often goes unnoticed unless the person is an athlete. You do have to watch for the PEs not dissolving over time as this can cause further issues.

    ‚ÄčI ended up having to go on an antidepressent as a few months after the diagnosis as¬†I started getting overwhelmed with anxiety. My pulmonologist thought it was PTSD from my experience.

    ‚ÄčThe illness¬†effects everyone so¬†differently.

    I am on Rivaroxaban ‚Äčand have done okay other than being tired.

    ‚ÄčTake care!

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    • Posted

      It seems if you are seeing a pulminologist once a month and a  

      hematologist once a month you are doing everything right.  

      What do they each do at your monthly check ups???

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    • Posted

      The hematologist does quite a bit of blood work once a month. Not quite sure why but as they don't know exactly why I got the PEs they are keeping watch. Also I imagine being on a blood thinner they want to make sure everything is where it should be blood wise.

      ‚ÄčMy pulmonologist had sent me for a CT scan and a VQ scan as I was feeling tired, had chest pain, etc. I know there can be issues when the clots don't dissolve so she is seeing that I am progressing.

      I am now on every three months to the pulmonologist as the clots in my lungs have dissolved. (Yay!)

      ‚ÄčFeel very grateful I got the care I did as we are not out of the woods until they are dissolved. And after that it's getting the energy and stamina back we lost.

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    • Posted

      Hi there did you have to push or ask for the appointments as I have multiple pe in both lungs and am on rivaroxeban, have started my stable dose this week and no one wants to see me until 3 months have passed ! I don't know if I have to chase anything up but that's it so far !

      The major side effect so far has been I am dog tired after a few hours working each day , but I hear that's pretty common so hey ho

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    • Posted

      Hi.

      that does seem to be the way it is handled. Once the PE's are discovered you go straight on the pills and are left. The medication will stop the clots causing any further problems I was told.

      You may also find that pain (for me it was my side and back) is intermittent too. I was calling my GP surgery a lot with concerns. Don't be afraid to do that. Ask for a recovery plan... Sounded good when I said it to the Dr and got more advice.ūüėĚ

      i was extremely dizzy on Rivaroxeban so changed to another anticoagulant, there are options out there.

      good luck

       

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    • Posted

      Hi

      I was very interested to read your comment about how you were 'extremely dizzy' when on Rivaroxaban.  A 'lifer', I switched from Warfarin about 3 months ago and am experiencing dizziness and feeling light headed to the extent that I have toppled over  a few times which is very worrying when thinking of possible head injury/bleeding!  My pulmonary consultant insists that dizziness is not a common side-effect of Rivaroxaban but my GP looked up the possible side-effects in his 'big book of words' and it was the first thing on the list!  I was just wondering what you changed to and how you have found the new meds?  I know we are all different but I just don't know if it is worth persevering with Rivaroxaban in the hope that things settle down eventually or look to changing to something else.  I do find both the experience and the management of this condition so frustrating and infuriating!!!

      Many thanks and best wishes

      Alex x

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    • Posted

      If you had no dizzyness when you were using the warafin what would be the negative to going back on the warafin that you tolerated??  With the warafin of course you do have to get tested monthly..
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    • Posted

      Hi barbaraG

      Thanks for your reply. On Warfarin my INR was all over the place and never settled properly.  I found the dietry restrictions a bit of a problem too and as for the frequent testing - I was being sent to a different clinic practically every time...sometimes 20 miles away and as I do not have transport that was a major problem.  I allso experienced some hair thinning and loss.  The NOACs seem so much easier to cope with if they suit you.

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    • Posted

      Hi Alexie,

      Yes the travel time would be a big problem and not something anyone would or should do if can be avoided.

      Negative side effects are dangerous and  if present I would definitly not continue to use that medication.   I would never try to get used to negative side effects as it is too dangerous.

       

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    • Posted

      Hi Alex

      There are other options to Rivaroxaban. Yes, I too had awful dizziness, not all the time but it was scary and often started when I was laying down - so odd !!!  Standing didn't help it would last for ages.  

      I asked for an alternative and was given Pradaxa 'Dabigaranum'.... I am reading it from the box and trying to give you the medicaiton name rather than the company.  

      I still get a little light headed but not much to worry about.  I find if I drink a lot of water any symptoms are greatly reduced.  

      Don't settle for the side effects.

      Good luck 

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    • Posted

      Thank you, that is very helpful.  I'm going to go and have a chat with my GP about it all as he seems far more on the ball with things than the pulmonary consultant!

      Best wishes

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