Continued discomfort after a PE

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I had a PE 2 years ago but I still get intermittent chest pain in my upper chest Even now. It is not brought on by exercise and does not go away when I put pressure on the area. I never had this before the PE. Has anyone else had a similar experience to myself?

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  • Posted

    I do get chest pain and had multiple PEs in December. My chest pain seems to be related to asthma symptoms because they started me on Advair and albuterol inhalers and I don't get the chest pain anymore. I'm seeing a pulmonologist next week to see if I'm on the right therapies and am hoping the asthma is not permanent. Have you been to a pulmonologist? Take care, Marlo
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    • Posted

      Thanks for replying, I have not seen a pulmonologist. When I spoke to my doctor about it a while back he said it was not related and that some pains are unexplainable. But that is not good enough for me as I did not have this before. It's good to hear that I am not the only one! I will go back to the doctor and see if I can get a referral. Thanks for sharing. Good luck! Anya 
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    • Posted

      I had a blood lot in thelungs many years ago and have been breathless for years.  I recently went ot another Cardiologist or who is Pulminary hypertesion specialist and he thinks it is scar tissue in the lung from the original blood clot.  There is a Vac procedure that he is discussing with me if the Lung scan or CT scan indicats that there is residulal blood clot or scar issue in the lung.  I would locate a specialist and take a battery of tests to see if this is what is going on with you.
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    • Posted

      hi barbaraG, anyakesh

      why didnt the doctors do the Vac procedure in the first place? How can doctors detach the scar tissue whilst the blood is flowing and catch the old clot?

      anyakesh, you mentioned on a previous post....

      'When I spoke to my doctor about it a while back he said it was not related and that some pains are unexplainable....

      Everything can be explained.

      It's a matter of interpreting, testing and collecting information. Maybe its better for Clot doctors to have clots in the first place, then they could explain the pains & stuff for themselves.

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    • Posted

      Hi

      You know I don't fully understand this yet. This is my first consultations with this specialist.  Up to this point I have been  dealing with my primary doctor who has been insisting I should just excercize which I can not do because of my breathlessness.     I srill have to go for a chest Xray next and a Lung scan.  I can not do not do a Cat Scan (which the doctor wanted)  because I have a Kidney problem/concern.  He said if he finds a blood clot or scar tissue after he examines the chest Xray and lung scan ? he will do this Vac procedure which is ony  a one day hospital stay.  My primary doctor has been saying my breathlessness is nothing and I did go to a cardiologist who found nothing.  This doctor is a Cardiologist also but a Pulmonary Hyertnsion specialist in addition.  This is the first person that has addresseed the breathlessness as a problem

      I am bervus about the Vac procedure.  They go in thru the neck and it is approx a 1 hour procedure.  Its a major hospital and they do have a team.

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    • Posted

      hi barbaraG,

      i think your primary doctor is a dangerous person.

      Today, I think, the whole point of pre & post clot exercise, is to ensure your muscular skeletal system/structure is supported by the relevant small and large muscle groups branching out from the spinal column, and allowing a balance muscle group development (fast & slow twitch/elastic & rigid) to fundamentally allow deep breathing and support for your internal organs to function without restriction or constriction - ie abdomanal wall. Once good posture is attained , ie  via slow relaxed walking, then that is an achievment, even if it takes a year to do. All exercise should be sensitive to blood flow and and blood flow friction of temporary to permanent tissue, abnormal tissue/clot or plaque, fat etc...think about how water can cut through a mountain..

      Any type of exercise that involves impact, racket sports, boxing, mma, self defense classes, jumping, jogging could dislodge new clots that are not dissolving, and may be temporary scars loosely attached to veins etc...are in my opinion a risk not worth taking.

      Cycling is another exercise, i'm not sure of, as there is a lot of blood flow in the legs. When I walk, I am doing full bodyweight exercise, developing posture and I get to listen to music, silence or radio. I try and make an afternoon of it.

      When I was bed bound, I recall gentle tensioning exercises from my extremities to my core, a frequent reminder the bits and pieces are still there.

      As far as breathlessnes is nothing!, it most definately is something. Your primary doctor is unqualified to advise or comment on these matters. He or she is way out of their depth, and dangerous. Change doctor and make a formal complaint. You would be surprised how some things can trigger breathlessness and other stuff. When it happens, it is real and can be disorientating to put it mildly.

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    • Posted

      Hi

      Thanks for the input

      But I don't know if I really understand what you are saying

      I will read it again and see how much I can aborb.

      I believe my breathlessness is coming from another clot fromt he original PE embolism.

      My Cardiologist who is a Pulminary Hypertension specialist beleives my lung scan will show a clot or a scar on my lung from the original PE that I had many years ago.  If that proves to be correct he is probably going to reccomend a Vac instrument going into my neck artry down into th lung to vacumn out th clot.  We will see what that Lung scan that I will get along with the chest X ray shows.

      Pulminary Hypertension does not occur to often and the Cardiologist I went to a few years ago bacause of my breathlessness found nothing that alerted him to any problem

      My primary doctor apparently just thought that if I was on Coumadin I could not be having a blood clot problem 

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    • Posted

      hi barbaraG

      "I believe my breathlessness is coming from another clot fromt he original PE embolism."

      i think levels of stress can sometimes cause your windpipe-to-lungs & internal respiratory muscles to tense up, making it hard to breathe, and may also coincide with reminders, weather, humidity, diet, hydration and inadequate rest and sleep. It's really difficult to rest when you have this condition - its full-time inside you, and at times overwhelming.

      Before i had dvt/pe/vte, i occasionally had tense neck and shoulders due to work stress. Exercise and taking my mind off work etc..

       

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    • Posted

      Well I have been under enouromous stress this last year and 4 months.      More stress then I have had in my entire life  but I don't think  my breathlessness  is from  the stress I think it must be this risidual clot  or Scar tissue left from my 2 PE eposodes

      I don't know this positevly but the lung scan I am taking next week might tell me more.

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    • Posted

      i'm sorry, i'm going through some stuff, myself. I've been through varying degrees of anxiety, stress and possibly mild depression before.

      Sometimes, i feel like i'm losing it, but i know deep down there's nothing wrong with my head, but could a little clot brake off from another circuit and get logged in my brain?

      For some reason, i can't explain, i've developed tunnel vision and I can only do one thing at a time, and even the simplest things take a lot of effort. One minute, you think you can solve the biggest problems, the next minute, you forget where you left your keys, parked the car, or even attending to your most important resposibilities.

      Living with VTE isn't easy, and it affects people around you, No-one should be witness to it.

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    • Posted

      Hi, it's my local doctor's opinion that the residual pain following removal of blood clots- after 4 months on Sintron( Warferan)

      is caused my scaring on the linging of the lungs. I had multible small blood clots in each lung and now I can breath easy enough but if I take a sudden deep breath or get to exvited I ferl a stabbing pain under my breast. Does anyone know if it's possible to come off Warferan in time or is it a lifetime crutch as my pulmonic doctor says here in Spain. It is hard as I've sever arteritis in all my joints and can't take the natural green vege and spicy curries that used to keep arteritic pain at bay. Any help with be greatlfully received.  

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    • Posted

      Hi, it's my local doctor's opinion that the residual pain following removal of blood clots- after 4 months on Sintron( Warferan)

      is caused my scaring on the linging of the lungs. I had multible small blood clots in each lung and now I can breath easy enough but if I take a sudden deep breath or get to exvited I ferl a stabbing pain under my breast. Does anyone know if it's possible to come off Warferan in time or is it a lifetime crutch as my pulmonic doctor says here in Spain. It is hard as I've sever arteritis in all my joints and can't take the natural green vege and spicy curries that used to keep arteritic pain at bay. Any help with be greatlfully received.  

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    • Posted

      Jesus Christ i've never heard a better reply in my life...NOBODY KNOWS THE PAIN....I am definitely going to use everything you guys are saying to help my situation i just had a PE 3 weeks ago and the presumption of pain is high every time i feel something in my chest/lungs and the doctors can't give me any info

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  • Posted

    I had a PE following birth of my daughter 2 years ago and still get the chest pain and shortness of breath etc. First couple of times I panicked and went straight to hospital and thankfully told I was fine although was made to feel that I've wasted their time. On the second visit the doctor told me that if my body picked up a virus like a cold etc then this would go into the scar tissue in my lung and can give me same pain but not as severe. Never seen/read anything to back this theory up but here I am woken up by chest pain and googling if others have same experience as me and found your post. My pain is every now and then not brought on by anything specific like stress, exercise like you might expect as it woke me up this morning after a good night sleep. Hope your ok and not suffering too much and this post helps a bit x
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    • Posted

      Hi Laura, so good to hear you are having a similar experiance to myself. I actually went to the doctors this week and have been told the same as you about the scar tissue and picking up a cold or a virus could bring it on. He also said that it was probably a bit of pleurisy and that it is quite common after a PE. Disappointingly he said I would probably suffer on and off for the rest of my life! But at least I understand it a bit better now. Good luck and i hope this info has helped you too. Anya 
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    • Posted

      Just found this site!  I too had PE in both lungs 2 years ago following an undiagnosed blood clot in my leg.  I too was made to feel as if I was wasting the doctor's time when coughing up blood, he reported that I was an "over anxious patient"!  A year to the day I was again checked for PE, seems like it was chronic bronchitis.  This year, again in April, I had another episode, another attack of the bronchitis.  A different Gp (sadly retiring in August), gave me an inhaler, which helped this time around short term.   Seems like if I pick up a cold, it is like the symptoms of PE, now I just don't worry the GP, as I feel the first one would dismiss my worries again.  I feel worse if the wind is strong when I am walking, or going uphill in the open air around the village where we live; stairs are fine though?  
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