Need Advice Please!

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I am an active runner. I ran a marathon on March 4, 2018 with no problems. The next morning I felt symptoms of a cold. 3 days later on March 7 I pretty much had a sinus cold or something. I went for a run that afternoon and suddenly had severe chest pain and could not breath. My husband took me to the ER. Said I had bronchitis and gave me an antibiotic. I continuly got worse. I went to my PCP and told her I cannot even do as little as 10 minutes of a walk without chest crushing pain and cannot catch my breath and it will last about 15 minutes at rest. Told her all of my symptoms; persistent cough, shortness of breath with minimal activity, fingers and feet cold and turn blue while sitting. Headaches etc... She did a chest x ray which was normal and a ddimer blood test which was normal. Sent me home with steroids!!! I was driving from college 2 weeks ago and I started feeling very weird. I got an overwhelming since of fainting in my head and fuzzy feeling. My fingers and lip starting tingling like pins stuck in me and then my face went numb. Went straight to ER. I was admitted for 5 days. CT scans were normal, echo normal, spirometer test normal, ddimer normal, VQ scan showed 90% probability for blood clots in my lungs. The doctors were shocked. I was released and put on blood thinners and told to follow up with heart and pulmonologist. So I made the calls. Finally got calls back and I have appts on May 30 and May 31.!! I still am having terrible breathing problems. Even while sleeping. I keep getting episodes of wheezing for no reason at all. Yesterday I was typing at work and I started feeling very light headed. I noticed my breathing becoming very shallow and then hard to event take a deep breath. My feet and fingers started getting very cold and tingly and then my right hand starts crippling up and my fingers were all stiff and bent in different directions. I left work immediately and got in car and went to ER. Symptoms still the same and breathing getting worse. Got me to a bed and started hooking me up to heart monitor. Symptoms starting going away, breathing slowly getting better. 10 minutes later I felt so much better???? x ray normal, blood work normal, ekg normal! Doctor said I had a panic attack and that is what caused all of this. I told him again what I was doing at the time it all started. He just brushed me off and said I was probably stressed and didn't realize it. Nurse came in to discharge me and take out my IV they had started. To add to everything I am in room waiting for nurse to come back in with my paperwork and my arm felt warm under my sleeve. I looked down and blood is dripping! When nurse came back in she said oh my gosh that's right you are on blood thinners. I should have applied more pressure! Seriously?? Anyways, please someone give me some advice.

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  • Posted

    Depending on the size and where your blood clots where. I had relatively small bilateral pes in November 2016. They were in the veins I was told not the arteries. Everyone is different. I recovered in about 6 months and was taken off thinners. Some I've heard takes 6 months to a year or longer. The breathlessness is normal. You have to take it slow and let your body recover from something this traumatic. Do they know what caused yours? Are you on BC or anything? That can cause it.

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    • Posted

      Thank you for the reply. All the doctors that have seen me are all very confused at what caused the clots. I am not on BC. Never have a problem until March 7! Ever! One doctor says he thinks its vocal cord dysfunction, but then the cardio doctor ordered the VQ scan and that showed the blood clots. My fingers and feet constantly tingle now and turn blue. I just am not getting any answers. So frustrating.
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    • Posted

      Have they tested you for a blood clotting disorder such as factor v or protein c deficiency?
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    • Posted

      Have they looked at raynaud's syndrome? ? I know you have other issues but this could also explain fingers and toes, it apparently can occur with people who suffer prinzmetal angina as well, but please don't quote me on that. It's just another train of thought.

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  • Posted

    Very strange. It took them a few months to diagnose me also when I had my clots. I would also suggest a neurologist. Many times the blue and tingling in the hands and feet are a neurological issue.
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  • Posted

    Hi Tara,

    You sound like you have been through the mill, sorry to hear that.

    Many PE type symptoms in there, but the tingling?   Not so sure...

    I am surprised they have said “90% probability” and just taken it as read. Normally, that would prompt a contrast CT scan to establish the extent of the clots.  I think that’s a must.

    On the bleeding side - I suspect it depends on which anticoagulant. Many have experienced heavy bleeding with Riveroxaban (Xarelto) myself included. It is administered as “one size fits all” but doesn’t seem to suit everyone.  If your anticoagulant is prescribed and dosed correctly, you should NOT expect heavy bleeding.

    Hope that helps and hope you get to the bottom if this soon.

    Peter

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  • Posted

    I had unprovoked PE in right lung in 2017. Six months on Coumadin. I thought mine was asthma and we treated asthma with steroids. Except steroids and breathing treatments didn't help. Took me over 3 months to be not short of breath all the time. Awful, scary time. The times I called my doctor's office and had a EKG which was normal when I was having chest pain. Each of us are different. I'm thankful I'm alive. A large percentage of us die initially of our PE's. I drew on strength of my friends and the calming care of my providers. Hang in there. Things do eventually get better and we learn to live with our new reality. With me, my heart didn't get injured but I do live with some pulmonary hypertension now. Take one day at a time.....and don't hesitate to call your providers when you are needing help, are worried about something. You're a survivor.

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  • Posted

    Hi,

    ?I find your story interesting, I'm very interested to know if they did a blood test called Troponin, I'm guessing it would of been way past the cut off point, the reason I say that is because this is common with marathon runners, most times there are no consequences but sometimes there are. Troponin is a heart specific enzyme, when the heart is under stress it releases this enzyme, I.E.... heart attack or as in your case marathon running.

    ?Another thing, the day this occurred was it a hot day ? the reason I also ask this is because I had similar symptoms 30 odd years ago, it was simply panic/anxiety attacks , I thought it was heat stroke, the next day I got similar symptoms as you, felt all fluey , tingly, passing out , breathless, the works.

    My symptoms weren't text book, early last year when I was diagnosed with pulmonary embolisms, I had my usual angina chest pain and lots of shortness of breath, it was a real effort to have a shower or even just getting dressed. Took me 12 months to come right from the P E.

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  • Posted

    hey, i am having 24/7 breathing issues for over a year now, and really feel for you!

    i am here to support you, i am pretty much in the same boat.

    go to the doctors and after x-rays, ct scans, the whole nine-yards... They just say that its all in our heads....

    we know our own boddies, and we need to fight untill we heal ourselves through power of will and determination.

    please keep me updated and feel free to message me about anything.

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