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Pulmonary embolism after care😢

Posted , 14 users are following.

Lazeedaze
Lazeedaze

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.

0 likes, 75 replies

75 Replies

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  • steve_1966
    steve_1966 Lazeedaze

    Posted

    Hi Lazee, I'm in a similar situation to you, I'm four weeks in to my treatment. I'm on Rivaroxaban and apart from nose bleeds I seem to be coping with the medication ok. Both my sons have had DVT's and have tried both Rivaroxaban and Wafarin. They seemed generally healthier on Rivaroxaban 

    As you don't seem to know why you have PE's it might be a good idea to pester your GP for all the information they have. How big/numerous are the clots etc. This may help you sort out a recovery plan. 

    My clots were not too large although it seems I had PE's for a couple of months before being diagnosed so they grew slowly and I became less healthy every week. I think that may affect how quickly mine dissipate but I'm not sure.

    excercise-wise, I'm currently walking/light jogging on a treadmill, checking my heart rate every kilometre and resetting the speed depending on how my body is reacting. I have seen real improvements in the last week.

    keep in touch

    Steve 

    • Lazeedaze
      Lazeedaze steve_1966

      Posted

      Hi Steve

      well your comments were perfectly timed. I looked at them just prior to seeing my GP,  I was ready with more questions and asked for a recovery plan. Haaaaa. Well it worked I have an appointment for Respiratory clinic, that will do me fine. 

      I have to say I do not check my heart rate. This week the pain has subsided in my side but am told this may come and go. 

      I am continuing with walking a lot as I have done since day one and now will start upping it with swimming just to make me breathe heavier. 

      Im ridiculously nervous to go back to badminton in case I fall😱 As we all know we mustn't do that.  I think I have to get over these worries. 

      Good luck and yes keep sending the updates on how you are doing. 

      Beth

       

    • -.a-way_forward
      -.a-way_forward steve_1966

      Posted

      for exercise, i think general movement and less impact and shock to the system.

      when I get a bit better, i'll focus on hydration, diet dissolving arterial plaque, cholesterol and any thing that might detach from your veins and arteries

    • steve_1966
      steve_1966 Lazeedaze

      Posted

      Hi Beth, I'm really pleased the pain in your side is reducing. Did you have PE,s in both lungs? I have one in my right and several smaller ones I my left. I've gone from being relieved that I haven't got something worse to being depressed that I've got something serious and have just about every emotion in between. 

      My eldest son has quite bad varicose veins in his non dvt leg and I funded a private consultant fee for him today. I went with him and it was clear that he shouldn't be operated for these veins. However we learnt a lot about his clots just by watching the scans and having them explained to us. He's now going back on Rivaroxaban. I will book myself in next week as the consultant seems to know his stuff. I wish I had done this from the start rather than waiting months for rushed consultations.

      Our family has Factor V Leiden and this is the reason for our propensity to clot. As you had been healthy prior to your diagnosis it might be worth pushing for a genetic test. I now know more about why I'm susceptible to them and I should be able to reduce the risks in the future. I'm certainly more comfortable with lifetime anti coagulants now even though these come with risks.

      Don't give up on the badminton idea quite yet (unless you always fall over). Everyone is different.

      steve 

    • Lazeedaze
      Lazeedaze steve_1966

      Posted

      Hi Steve.  

      I think I have one clot... to be frank I have not looked at the x-ray, scans, since first being diagnosed and the Prof in Singapore did not mention multiples, let's hope it is one.

      Thanks again for your info.  I too will find a private consultant to get proper advice, did you get consultants details from your GP?

      I so understand your emotions, we look normal don't we but have scary thoughts hammering at our brains. I have so many plans but I am at a standstill for some reason. 

      I think I will give swimming a go.... I find it hard work but at least I can't bang my head!

       

    • steve_1966
      steve_1966 Lazeedaze

      Posted

      Hi Beth, if you have a doctor's appointment coming up it would be worth asking. My wife was recently referred by her doctor to a hand specialist who was very good. The doctor I tried to find out who to be referred to for my clot didn't really seem to know and just told me to phone a local private hospital (we went for the Oaks in Colchester, Essex). The receptionist was helpful and got an appointment for the next day. 

      We ended up with a Vascular Consultant, I'm not absolutely sure that would be right as we wanted information on DVT's but I think it would be. He did say that if I had a second PE episode he would consider inserting a SVC filter. Well that has worried me into making sure I take my medication religiously.

      Just to give you an idea of cost - I'm sure it depends from area to area the consultation was £180 and the scan of my son's legs were £150 for one or £220 for the pair. 

      I'll let you know how I get on when I see him for my consultation as the first one was just for my son but with me talking in the corner.

      good luck with the swimming, if you get any worthwhile info from your consultant please let me know.

      Steve

    • steve_1966
      steve_1966 Lazeedaze

      Posted

      Hi Beth, if you have a doctor's appointment coming up it would be worth asking. My wife was recently referred by her doctor to a hand specialist who was very good. The doctor I tried to find out who to be referred to for my clot didn't really seem to know and just told me to phone a local private hospital (we went for the Oaks in Colchester, Essex). The receptionist was helpful and got an appointment for the next day. 

      We ended up with a Vascular Consultant, I'm not absolutely sure that would be right as we wanted information on DVT's but I think it would be. He did say that if I had a second PE episode he would consider inserting a SVC filter. Well that has worried me into making sure I take my medication religiously.

      Just to give you an idea of cost - I'm sure it depends from area to area the consultation was £180 and the scan of my son's legs were £150 for one or £220 for the pair. 

      I'll let you know how I get on when I see him for my consultation as the first one was just for my son but with me talking in the corner.

      good luck with the swimming, if you get any worthwhile info from your consultant please let me know.

      Steve

  • steve_1966
    steve_1966 Lazeedaze

    Posted

    Hi Beth, if you have a doctor's appointment coming up it would be worth asking. My wife was recently referred by her doctor to a hand specialist who was very good. The doctor I tried to find out who to be referred to for my clot didn't really seem to know and just told me to phone a local private hospital (we went for the Oaks in Colchester, Essex). The receptionist was helpful and got an appointment for the next day. 

    We ended up with a Vascular Consultant, I'm not absolutely sure that would be right as we wanted information on DVT's but I think it would be. He did say that if I had a second PE episode he would consider inserting a SVC filter. Well that has worried me into making sure I take my medication religiously.

    Just to give you an idea of cost - I'm sure it depends from area to area the consultation was £180 and the scan of my son's legs were £150 for one or £220 for the pair. 

    I'll let you know how I get on when I see him for my consultation as the first one was just for my son but with me talking in the corner.

    good luck with the swimming, if you get any worthwhile info from your consultant please let me know.

    Steve

  • SamP23
    SamP23 Lazeedaze

    Posted

    Hi Beth,

    I went to see the haematologist yesterday and had a very useful discusion. She told me that my repeat Ddimer test was back to normal..... 200 as opposed to 8000 in September. She said that I was in the low risk section of this happening again. However she said she would understand if I wanted to remain on the rivaroxaban due to the severity of my condition initially.

    I asked about various issues concerning my breathing and she confirmed that most patients with PE are very reluctant to exercise for fear that something may happen and that really we all need to exercise and help improve our lung capacity.

    I was also told that if I came off the rivaroxaban at the end of my 6 month course but then went on to have a recurrence it was very likely that I would stay on rivaroxaban for life.

    I think you ought to speak to your GP and ask to be referred to a haematologist and see what they say.

    She also gave me another forum to contact with others who suffer from DVT and PE

    http://www.thrombosis-charity.org.uk/home.php I think this is it but haven't had a look at it yet.

    I am going to think long and hard about coming off the rivaroxaban but it does work as my tests show we just need more support.

    Hope this helps a little.

    Sam x

    • Lazeedaze
      Lazeedaze SamP23

      Posted

      Hi Sam

      Thanks for your info.. It certainly does help. I am building up my knowledge ready for my appointment with a Haemotologist in 3 weeks. I insisted on it which seems madness. I have no idea of the severity of my condition as no one has looked at the results since diagnosis abroad!   Ignorance is my problem. Another forum member benefitted from a private consultation which I may do too.  I have so many questions. 

      Phew, relief for us that the problem was found, it has removed my love of a B&C  I don't want to feel any more light headed than I 'occasionally' do.  I hope that is not perminent😝

    • SamP23
      SamP23 Lazeedaze

      Posted

      I am sure a private consult will not be necessary. I had bloods done the first time when they checked my ddimer score and my iron etc. They may give you a ct scan if you have had nothing. Your light headed Ness may be because you are slightly anaemic. Try not to worry. X
    • steve_1966
      steve_1966 Lazeedaze

      Posted

      Beth, I saw the vascular consultant today, I had my calf scanned (as did my son) before we saw him. 

      I got different information from both the scan and the consultant and it's still a bit confusing.

      I'm due to see a haematologist in April and I'll wait to see what they say.

      headlines appear to be that I still have a blocked superficial vein in my calf which might clear and I need to stay on the medication for life and wear flight socks. Same for both my children.

      i'm moving over to Apixiban as I'm getting nose bleeds. The PE's may or may not have come from the blockage (that was helpful)

      Anyway, the consultant says that  should exercise as much as I feel I can and we chatted through options.

      I'd set myself the goal of Cycling from London to Paris on my 50th birthday (in July (taking four days)) and I've decided to still give it a try.

    • Lazeedaze
      Lazeedaze steve_1966

      Posted

      Brilliant...what a challenge.

      I have one in mind too...you are inspiring me. before this blip everything was possible, that attitude should not change should it.

      My meds are Predaxa dabigatranetexilat. 😜 Apparently banned from use in USA, due to sudden deaths😳

      My dr seems to think ok for use in UK if you aren't over 75 and have no kidney problems!! I insisted on a blood test, I know my age but don't know the health of my kidneys.

      consultant info is interesting... I am armed with questions.

      Keep in touch

      Beth

  • Supertractorman
    Supertractorman Lazeedaze

    Posted

    It does concern me reading these columns to see so many people having nose bleeds with Rivaroxaban yet my Doctors did not want to know, and only after extreme pressure did they change me to Apixaban and now no nose bleeds and generally I think a better tablet for me regarding side effects.
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