UNPROVOKED PE in both lungs and now DVT in arm

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Hi everyone this experience is absolutely horrid and scary. I'm currently going through unprovoked PEs & unprovoked upper-extremity DVTs.  Dr.s are all at a loss because mine were both separate incidents, both unprovoked and all my blood work has come back excellent. I'm hoping someone might have experienced  a similar situation with a similar lifestyle. 

I'm a 36 yr old female non-smoker, never used hormone or birth-control pills, never been a drug user, active lifestyle, absolutely no trauma, have not been traveling, I do not drink, vegetarian,.....

I went to the ER a week ago Saturday with chest pain and right arm swelling. The ultrasound of my arm was negative for any clots and so was my chest X-ray...but the CT dye scan showed I have countless PEs in both lungs. I was put on Eliquis and sent home on Sunday. Wednesday morning my right arm and chest wall looked like The Hulk, all the veins protruding and swelling unfortunately I could not breathe but I made it to the ER. I now have extensive large blood clots under my clavicle, arm pit and down whole arm. After 2 days in ICU and on a Heprin drip I still was not able to get therapeutic. I was switched to Warfarin and Lovanox shots. I spent 5 days in the hospital, now I'm finally home.

I have fantastic Drs but none of them have any answers and because of the severity of my clotting and being unprovoked the outcome is Warfarin for life most likely. I own a horse farm and a hair salon... I can't work for the next month and I'm not sure if I will ever be able to have the active lifestyle with my horses as I did before. We have 4 children and I am in so much pain when I breathe and I'm so so tired it's difficult to move around much.  The pain in my lungs come and go???

 I've never experienced any health issues, I'm extremely health.  This has been devastating to me and my family. I'm so greatful to have found a chat room with other PE/DVT survivers. Hoping someone might have some answers or suggestions for my situation. Praying I don't have to be on blood dinners for the rest my life but it's not looking promising . Thank you in advanced for any replies they're greatly appreciated I hope everyone has a beautiful day. Xxoo

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  • Posted

    Wow, you have been through the mill lately. Thankfully your medics seem to be on the case and trying to find out the cause. You and they need to stick with it, as your presentation is pretty unusual (arm vs leg or abdomen). 

    Given the number of clots, it is going to take a while to recover, I am afraid. It would be senseless to tell you otherwise. 

    The good news is that it will get better and better. I too had a lot of clots in both lungs too and I am back to normal.

    Warfarin is not too bad - I have got used to it over time and it is very well tried and tested. I have been on it for almost 2 years.

    One last thing.... The medics told me to come straight in to a&e if I had any issues. I would suggest you do the same. I did so once and, even though it was a false alarm, they said it was the right thing to do. 

    Good luck and stay in touch.

    Peter

    p.s. anxiety is one of the side effects, so don't beat yourself up about it.

    P

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    • Posted

      Thank you so much Peter it's all so foreign and scary to me and my family.

      Will you be off Warfarin one day?? All my Drs say I will not but if it keeps mehealthy I will definitely accept it.

      Unfortunately everyone who has examined me and looked into my case find it extremely unusual especially since I developed the PEs before my UEDVT. 

      Thank you again, I'll definitely keep you posted on what happens in the future.

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    • Posted

      No, I won't be coming off it - I am on warfarin for life (my PEs were also unprovoked). I also do not conform to the profile for PEs, not on pill (boy), skinny, no recent air travel, never sit still etc. etc.

      I think "unprovoked" means "dunno", but the warfarin isn't a problem, so finding out why no longer matters. 

      P

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    • Posted

      Yes I totally agree with you"unprovoked " is "we have absolutely no idea"...Did you seek medical advice from a speciality hospital as well for any possible answers??

       I'm trying to decide if I want to go Mayo Clinic. I am under the impression that no matter if you get a crazy diagnosis or if one is never found the out come will be the same, Warfarin for life. Thanks again for your replys smile

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    • Posted

      One more strange question Peter, do you bleed and bruise easily?? I have been on Eliquis, which I developed the DVT in arm while taking, then heprin drip, Lovanox shots /Warfarin and now just Warfarin. I had my INR done today I'm at a 5.3 but I have not bruised once not even with the shots and I do not bleed after they take my blood or take IVs out. 

      I know it's an unusual question just wondering if you or anyone else experiences this. I'm little 5'4 100lbs and I'd assume I would have bruised/bled but I just don't...at all. 

      Thanks a bunch, A.

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    • Posted

      No, I didn't seek any other advice, I was getting good care and didn't even think of it.  I am also not sure anyone specialises in PEs. I was under the pulmonary team and seemed to be the only PE patient there. The rest were COPD, asthma etc and I seemed to be improving once on anticoagulants, whereas there treatment was management.

      My recovery was slow, but steady. I own dogs, so got back to walking after a few weeks and suspect it was the best thing for me. Ironically, leading up to my hospitalisation, my walks got shorter and shorter (most likely as the clots were multiplying), so I just reversed the process smile  

      Little and often worked for me, with no long walks initially and no pushing myself. Being stubborn, I tried it more than once, but it just didn't work....

      I always felt that a group meeting up would help, but don't think that could happen due to low incidence and wide geography, so this site is a decent fallback.

      Just don't volunteer to blow up the balloons at xmas (don't ask me how I know......).

      All the best.

      Peter

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    • Posted

      Hi Again,

      Ask away, don't think there are any strange questions on this subject.

      I have been on heparin, rivaroxiban (Xarelto) and warfarin.  I bruised on the heparin, bled on the rivaroxiban and am fairly stable on the warfarin.

      Strangely, like you, there seems to be no relation to inr to bleeding. When my inr is the highest, often the pinprick for the test doesn't bleed much.  I am also quite slight - weighing around 150lbs, but at 6'2" .

      Maybe we just can't spare the blood cheesygrin

      I have been on warfarin for about 18 months or so and fluctuations get less and less. So much so that any thought if switching to a modern onehas gone out of my mind.

      Cheers

      P

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    • Posted

      We must have super duper goopy blood running through our funny veins😃

      Thank you for all your help. Our situations seem very similar especially with our life styles and body build. 

      I have a farm with all kinds of critters so hearing about changing the walks with your pups, shorter but more often, really means a lot to me. The thought of having to give any of it up is detrimental. 

      It's a very strange realization to process, one I believe might take me a bit to accept but like you I've got a great team of Pulmonologists and a fantastic Hematologist...life is good!!!

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    • Posted

      Glad to be of help. Also sounds like you have a good team watching you back.

      It may be gloopy, but since I am English, you do know my blood is blue  lol

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    • Posted

      Blue bloods are always the best!! 😁😁 Thank you again look forward to having a good update in a few weeks.

       Enjoy those nice walks with your pups...They make everyday beautifulsmile

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    • Posted

      Ugh...Had my INR done Wednesday it was pretty high, 5.3.  Unfortunately it dropped to a 1.8 this morning,  which of course isn't too far off my target of 2-3 but still frustrating it plummeted so much in just 2 days. I've been so good about my diet too.

      It's been a bummer of a day shortness of breath and my arm has been swelling off and on all day. 

      This new life is very unpredictable... 

      All the best, A.

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    • Posted

      "I'll see your 1.8 and raise you a 3.6"

      Mine's just gone the other way and I am at 3.6 now rolleyes  In theory, it should be nice and stable, but warfarin does like to throw in the odd curve ball.

      In your case, it does sound like the early stages when it fluctuates quite a bit. Just make sure you are not being told to change the amount too much, as the long half life can make it pendulum from high to low inr as you chase down ever changing doses.

      Generally, the dose you take on a Friday will influence the inr on Sunday/Monday (ish).  I am afraid I can't advise about diet, as I don't tend to monitor mine (naughty step for me redface wink.

      Sorry to hear about the bad day.....the breathlessness is unpleasant but kind of expected. That arm, though, sounds very uncomfortable.

      I hope the weekend brings some improvement.

      P

       

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    • Posted

      Tricky situation we're in!!

       I am definitely comfortable being a habitual creature so this whole Coumadin curveball is completely throwing me off😳 

      I have been seeing 3 different Drs so everyone is switch my dosages constantly but Thank goodness I see my Hematologist next week and I will be able to work  primarily with him and get my levels where they should be.

      I hope you have a lovely weekend, next week is going to bring great news and a positive outcome! smile

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    • Posted

      I guess I am lucky to have been born on the chaos end of the scale then. Process has never been my strong point....

      I did some analysis of the dose to inr ratios in the early days and it really is quite tricky to find a correaltion between dose and inr.

      They use a computer system here that is very basic. It takes your median dose (in my case 5mg/day) and adjusts up or down for the week or month based on the last inr only.

      i.e. I was on 5 a day and my inr was 2.9. So they adjusted to 4mg on the Thursday and 5mg for the other days of the week, to stop inr overshooting 3.0.

      The next week it was 3.6, so program said 3 days at 4mg & 4 days at 5mg for the next week.  Very crude and simplistic system.

      Your problem, I suspect, is that they don't know what your median daily dose is.  That will come with time and the best people to find it are the haematology specialists and nurses.

      I am sure next week will be a good one!

      all the best

      Peter

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    • Posted

      My Coumadin team tells me to go ahead and eat all those leafy green vegetables and fruits that have vitamin k in them. (Not mango and papaya). They said just consistently eat them. Then the Coumadin will be adjusted to what I normally eat. But, I'm new to all this,too, and I don't eat them and then I do. Just finished my first week on Coumadin and Lovenox for unknown reason of PE a week ago. Just bought my first big batch of bandaids after bleeding heavily in the shower from a Lovenox injection site. Sheesh! And I'm not at therapeutic INR level yet!

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    • Posted

      Hi Sue,

      I also tend to eat green stuff sometimes, then leave off for a while. It does affect my inr, but not drastically. What really makes it spike is any sign of an infection or cold etc.   I eat mango on occasion and was unaware it had any effect (!?).  Papaya is not easy to get in the uk (not where I live anyway, maybe in London).

      Reading your post - did you say you got another pe a week ago?  That and heavily bleeding doesn't make sense....no wonder you are struggling.  The only ray of hope I can give you is that everything got much easier when my inr settled down. (Interestingly, I feel significantly better when it higher (c3.5). No idea why).

      Keep posting and I will throw in any thoughts or experiences I have. 

      Let's see if we can help get you on an even keel.

      All the best

      Peter

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