Symptoms

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Why is it that after being diagnosed with large PE in both lungs in November and since being discharged from hospital in December after also getting Pneumonia there are days now where I feel worse that when i was discharged.

After going for lung function tests on Thursday, the last few days I have felt quite breathless at times and a heavy feeling on the chest.  I feel like I am going one step forward and three steps back. It is so worrying and frustrating.

Am seeing respiratory consultant Wednesday so hopefully he will be able to advise.

 

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11 Replies

  • Posted

    Hi Debbie01,

    I was diagnosed january 2016 and was only found clear in July 2016 with a follow up clear in December 2016 with further testing.

    The effects of pulmonary embolism does have an effect on your body. I was in zeralta until July 2016 and then was switched to baby asprin, if which I still take today.

    It takes 6 months minimum to have the medications work on your body properly and you have to keep yourself "calm" and in the mindset that you will get better. I recognize my body still reacts to stress (extra work hours, not enough sleeo, etc.) That causes me shortness of breath sometimes and chest/ soreness. Keep yourself positive, after 9 months i was allowed to go to the gym again to do light cardio and weights that does help reduce stress and anxiety. Keep your doctor posted if your conditions as they change. Others do not know what you are going through, people on this site do

    Be strong and have faith.

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    • Posted

      Hi InVinceable

      Thank you for your message.  I really try to stay positive but it is so difficult at times.  This forum has been so very helpful and it is great to be able to speak with people that are / have been through the same.

      Take care x

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  • Posted

    Clots in both lungs diagnosed in August. Had no follow up appointments. Just left with apixaban blood thinners. I know what you mean. I had felt better a month or so ago. Now I am breathless again with pressure on my chest feeling. Just getting really fed up now. So many jobs to do and can't do much at all. So tired and rapid heart beats. You are amongst friends. We will have to help each other through this. I have family and friends but this makes me feel alone. xx

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    • Posted

      Hi Lizzie

      I know exactly how you feel, I too get rapid heartbeats that just seem to come on for no reason and then this makes you feel terrible.

      I get really frustrated that on one day I can go for a short walk and not feel too bad and then the next I can't do anything, even pottering around the house is difficult.

      It is so good to know that we are among friends.

      Take care x

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    • Posted

      Thanks Debbie. Yes exactly. Take care. Keep in touch. So nice to be able to talk to somebody that knows how I feel. xx
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  • Posted

    Hi Debby,

    I am afraid that what you describe is often the case. Some people do recover quickly, some take longer. Much probably depends on the extent of the damage and the individuals' capability to heal.

    I would try to correct what I think is a misconception about drug treatments (not an expert here, so if somone knows more, please jump in). It is my understanding that most of us get no treatment for the clots/damage - the anticoagulants are preventative [of further clots] not a treatment to heal exisiting clots. The body itself clears the clots away. If any remain (maybe where the blood flow is cut off??) and these can form scars. 

    So, you are left in a situation where there are a number of things that can make you feel worse:

    You are healing, so the body is using resources to carry this out.

    Lung capacity is reduced whilst the clots are present.

    The underlying cause of the PEs may still be present.

    If you are still taking anticoagulants, they make you feel less than 100%

    You are getting less exercise, so will get less fit.

    Not trying to paint a gloomy picture, just drawing attention to the fact it will take time. I am about a year ahead of you and the people who replied above and I am a huge amount better than I was. It just took time. My memories of recovery are fading, but it was something like:

    Months 1-4 I was unable to walk far and found a number if activities difficult. 

    Months 5-8 I was able to walk twice as far, could do much more (although mowing the lawn was a no-no).

    Months 9-12 I was back to normal on walks, many activities also back on the menu. Still got the occasional chest discomfort, but generally felt pretty good.

    Months 13 to now: hit winter and found transitioning from cold to warm air was a challenge. Otherwise stayed about the same as before. With the warmer weather aches are less, so I am guessing spring will bring continued improvements and maybe summer I will be back to 100% (although as a "lifer" on warfarin, I will have to stop riding fast bikes and stay away from sharp knives.....).

    I am probably at the extreme end of the problem, as I had many large clots in both lungs and I am no youngster. Most of you should see a faster recovery.

    Hope that helps.

    Peter

    p.s. When I recently asked some questions about PEs at the warfarin clinic, I drew a blank on answers. This was because they have almost no PE patients (because it is fairly rare occurrence).

    P

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    • Posted

      Peter thanks for the information on your experience. It explains so much more than I had been told by doctors. Take care. lizzie
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    • Posted

      Hi Peter

      Thank you so much for your excellent reply, it is really helpful to know your time frame and how you felt at different stages.

      I am certainly getting hardly any exercise and I know that this is making me feel frustrated as I don't like being stuck at home, just going out for a short walk on a good day does help.

      Take care 

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    • Posted

      Hi guys, u all seem to be very knowledgeable and help full. I was diagnosed with multiple pe's bi lateral as well as a big cluster in the center of my chest in Nov 2014. Nov 2015 I was cleared. I do get some pain n rapid heart beats every now and again as well as those deep breaths. I sometimes think it's in my head cause I was mean hrs from deaths door. And until I collapsed n passed out on my living room floor with issues breathing. I had 2 episodes like tht in 45 mins and then nothing. Spent 8 hrs in the e.r. the doc was ready to send me home n she did one last test n sent me directly to icu for 5 days n then reg room for 3. However I was talking the same as I am right now the whole time. Aside from passing out 2x tht morning. Anyway my point to this is the last 4 or 5 months everytime I get my monthly cycle, I have alot of bloodclots. Every single time I go to the restroom I see them. Is this or could this be a symptom of returning PE. I'm worried and have been unable to get in touch with a pe doc. I hope someone has an idea good or bad. Thank you in advance. I'm so glad everyone has been doing good, I send good thoughts n prayers to those still battling through theses difficult waters. Hope everyone has a great day$!!!

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    • Posted

      Hi Jess

      It is so worrying when you get all these different symptoms and can't seem to find an answer anywhere, this forum though has and is brilliant...I do get a few small clots when I am on my period although I have never mentioned them to the GP.  If you are worried then please seek advice from your doctor who will hopefully be able to put your mind at ease.

      I think the psychological aspect is really difficult to get under controol, I know that I suffer really badly with anxiety and at times it seems to totally control me and my life.

      Take care and get checked out, you will feel better for it smilesmile x

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    • Posted

      Hi Debby, i can agree with all i am reading here, i feel your pain and just want to try to be back to normal.  I am so lethargic on the apixaban and feel depressed with the whole scenario. Some better days but since moving off warfarin feel worse. Ill have to discuss with gp what to do next. Anti depressants do not go well with anticoagulants which is a problem. I see Jess is suffering too with anxiety and i dont think the psychollcal side is dealt with well by the drs. 
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