2 Months post PE diagnosis

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Wow...what a rollercoaster of emotions. Starting in March 2016 I had calf pain for a month. DVT ultrasound came back normal. Then I had my first "asthma attack". Palpitations, fast heart rate and shortness of breath constant. Had an echocardiogram, stress test and holter monitor. All normal. In and out of emergency department (at least 8 times ) my asthma was blamed. Chest xrays clear, D-Dimer bloodwork negative Oxygen sats always 99-100. Given a nebulizer treatment every time (never helped). My dr put me on antidepressants and said the breathing difficulties are all in my head. finally, one dr believed me and gave me a CT scan with contrast and there were my clots. two in my subsegmental arties in the left lung. It's been 2 months and I still feel hopeless in this recovery. Shortness of breath comes and goes, almost as intense as it was pre-diagnosis. I am on prednisone now to try to help with shortness of breath. I just feel so low.

Thanks for listening all!

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  • Posted

    Amanda! Listen up, former PE "survivor", welcome to the club! Anyways, to my story, back in 2013 I had a leg injury, which gave me a clot in my left calf, about 2 weeks later came the chest pain. I'm surprised they waited so long to do a CT scan for you. Anyways I was soon diagnosed with factor V Leiden, a blood clotting disorder. I had chest pain for a longgggg time afterwards, always thinking I had another clot in my lung. Still never had another. About a year went by with random chest pain, and it's been over 3 years now I still from time to time maybe once a month or so I'll have chest pain for a few minutes and it'll go away. That also could be stress idk. But it takes a while for the pain to stop, and it might never stop but you will get to feeling better!

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    • Posted

      Hi Jake!

      Thank you for the encouragement! I know one day I'll look back on this and it will be a distant memory. I guess it took so long because my bloodwork for clots always came back negative and they used my asthma as a scapegoat sad

      I also have no reason as to why a clot should happen (ie. birth control ). Turns out my lupus anticoagulant test???? came back positive....so further testing may show some kind of clotting disorder...they speculate. One thing is always leading to another!!!! I also have alpha one antitrypsin disease...which is a degenerative lung diseas....but not a strong progressing genotype apparently. I have found all this out because of my shortness of breath! UGH!

      I guess it's a good thing to find an underlying cause...but I feel like a hamster running on a never-ending wheel.

      I am happy to hear you are doing well and recovery is going strongly. Thank you again for reaching out..it's nice having the support smile

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  • Posted

    Your stamina and strength does gradually come back. Stay positive. Shocking it took so long to diadnose though.

    My research after I had one suggested as we are all different, it can take anywhere between 2 months and 2 years to get back to normal.

    Mine took 5 months!

    You will get through it Amanda.

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    • Posted

      Hi Don!

      It definitely has been a brutal run thus far. I hope I can recover quickly....but at this stage it's hard to see the light.

      After the 5 months, do you feel completely better? How many PE's did you have? Did you do anything to assist with healing? I am always curious to how others approached their recoveries smile

      Thank you again!

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    • Posted

      Well I feel normal but do get tired if I do some diy, gardening or something similar that is a bit strenuous.

      I also had pneumonia with my clots which went to my lung.

      As for healing I just listened to my body, when it is telling me to lie down for can hour or two, I do. Not having my 2 hour siestas now though!

      I just get on with life Amanda and rest when my body tells me I need to.

      Sounds a bit wishy washy I know but as everyone keeps saying everyone is different.

      All the very best in your recovery.

      Don

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  • Posted

    Hi Amanda

    I was diagnosed june 2016.. i have had to give up my job cant walk kids to school as i find my stocking restrict me.. one pair is far to tight that it cuts circulation off.. i feel low and have a few good days followed by alot of bad days.. im seeing consultant again on 5th oct to find out if i need to continue with my blood thinners ( im on apixaban).

    The pain ive been getting recently in my left calf is bad almost like my bones are hurting.. i too just want an end yo it all..but 2 years wearing my compression stocking i have to look forward too.

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    • Posted

      Laura, June 2016 just wasn't our month was it?!

      I am so sorry that the stockings are such a nightmare, and can agree with the more bad days than good days aspect.

      We can do this! Please keep me posted as to how you are doing!

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  • Posted

    Hi Amanda, 

    Sorry to hear about your troubles. It seems like diagnosing PEs can take a few attempts.  On the recovery front, I am afraid it will probably take a while.

    The good news is, it WILL improve.  It took me around a year to recover, but I did have a lot of large clots so may be at the upper end. Recovery came in jumps, with little for a few weeks, then a big improvement, followed by another plateau.

    Exercise helped a lot and is pretty much self regulating, so you won't overdo it. Walking was the best rather than anything heavily aerobic.

    Good luck with you recovery.

    Peter

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    • Posted

      i know from personal experience, exercise can send you back into hospital, and potentially get you into big trouble. I've inadvertently done it a few times as I tried to 'move on and get on with my life'

      Exercise starts with either being horizontal, seated or vertical, with relaxation and gentle breathing - this gives an opportunity for disturbed clots to settle in its new destination and dissolve with the aid of thinner blood, hydration and good dietary nutrition, vitamins & minerals. 

      In retrospect, during the first 6months of anticoagulation

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      ______

      The next 6months could be....

      Very slow gentle walking with two hiking poles (walking sticks), feeling the sun & wind and some relaxing music could possibly be amongst the first types of exercises depending on location and size/description of clots you may have. It'll take your mind away temporarily from pain, worry & unease. 

      Using hiking poles and walking on flat ground/pavements supports structural integrity & utilises all your limbs and extremities - fingers, toes and thumbs (should you be able bodied); this supports and encorages circulation slowly, gently and naturally.

      _____

      _____

      So after the first year, you'll be re-learning your body after clots, anticoagulation, emotional & physical changes and also experience general inputs such as weather- (humidity, temps, wind/rain, atmospheric pressure fluctuations), common colds, chesty coughs, flu, heartburn, heartache, lack of energy whilst lung/s are repairing/adjusting, life stresses & anxieties - relationships, work, money, faith etc...

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    • Posted

      Hi Peter,

      Your words are very encouraging! I wish it all stopped at the clot...turns out finding what caused the clot and new possible health diagnoses are looming overhead sad

      I am looking forward to being able to exercise, how did you go about this? Did you walk for a specific time and continue to increase it etc?

      Thanks again, Peter!

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    • Posted

      Hi Amanda,

      I started from a very low base - across the room. I then gradually increased. I checked with my specialist and he told me exercise is good, just listen to your body and don't push too hard. After 6 months, I was up to a mile or two and thought I was fine....until I came across a small gradient and had to sit down! rolleyes  Specialist said that was normal, so I kept going. I am up to a mx. of an hour or so, so still a way to go, but happy with progress (it's probably more to being out of condition than the PEs now).

      Given you have asthma, it would be wise to check with your specialist, but for me it was all positive.

      All the best.

      Peter

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  • Posted

    Hi Amanda.

    I think i have had a similar experience to you.

    ?I have had emergency referrals to the hospital (by GP) on four occasions over the past year. Every time I had shortness of breath and sharp pain in my ribs. In the hospital they did a number of tests including D-Dimer, arterial blood gases and a chest x-ray. All of these came back negative for blood clot indications. I received the following diagnoses:

    ?First time - pneumonia

    ?Second time - asthma attack

    Third and fourth time - muscular pain

    ?I think that because I have asthma and exercise regularly the doctors were able to find an excuse for my symptoms easily.

    ?However this month i have been diagnosed as having a DVT in my subclavian vein (arm). My consultant is now questioning the previous four diagnoses as he thinks that i probably had a PE on those occasions but because the doctors didnt do a CT scan they couldnt diagnose it.

    I'm so relieved ish that a DVT has finally been diagnosed but also scared out of my mind!

    ?Just so you know that you are not alone in all of this.

     

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    • Posted

      Hi Holly!

      We have definitely had the same experience. My asthma is also now being questioned....as they think I don't have it at all. But like you said, asthma was always used as an excuse. They have done some more tests, I may have lupus coagulation. ...and will probably be on thinners for life.

      How are your symptoms now? Any shortness of breath?

      Thanks again Holly!

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    • Posted

      Thank you sooo much! You are right, listening to our bodies is key. I often forget to do this as I am a mom of yound children and work full time. Luckily for me, my husband is amazing. I am a fighter and will get through this!

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    • Posted

      Hi again

      ?It's good news about your asthma - you dont want to be taking medication if you dont need it!

      ?I havent heard of lupus coagulation but I will have a nose around now.

      ?I'm preparing myself for being on thinners long-term or maybe life depending on the results.

      ?At the moment i have been told that i have antithrombin deficiency, elevated factor viii levels and thoracic outlet syndrome.

      ?I'm waiting for tests to come back for factor 5 and factor 2 mutations. have you had these tests done too?

      ?No shortness of breath really. I get a tight chest sometimes but i think that is a combination of asthma, stress, cold weather etc. My main symptom is pain in the arm - it is getting on my nerves.

      How are you doing in terms of symptoms?

       

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    • Posted

      Hi Holly,

      Sorry for the late reply. I am always short of breath. ...it sucks. My quality of life is not great but I'm trying to stay positive. I am currently going through some tests...no answers yet though!

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