Multiple Embolisms

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Hello, I am really looking for some friendly advice and support. On the 19th May I was taken to hospital with severe chest pains, I could not walk and had shallow breathing. I had an ecg, bloods taken and a chest xray. The bloods showed that I potentially had a clot so straight away they injected me in my tummy with heparin and admitted me into hospital. 

I had a CT Scan the following morning and they confirmed I had multiple embolisms, I was heart broken. They reassured me that I was receiving the correct treatment and the clots were already breaking down due to the heparin the day before.

I was discharged after three days as they were happy I was stable and just needed rest at home for a while. I was still very weak and I had to go back home to live with mum and dad whilst my husband was at work. I couldn't brush my own hair, shower myself and I needed someone to support me when I walked. Now, a month on, I am doing much better. The Dr's believe that this was a combination of me being on the contraceptive pill and my weight. I have made some life changes, I work full time and am also completing a degree so I have postponed this years exam and I am taking next year off to give myself time to focus on myself and recover. I also joined slimming world and have lost over a stone, I make sure I get a 30 minute walk in every day, although sometimes it can be too much and I get out of breath.

I have been prescribed apixaban which so far I have not had any bad effects from. I saw the nurse last week and she was happy with my progress. She has asked for another blood test to check my liver or kidney function, I can't remember which. 

It's been an anxious month for me, I am trying to focus on the positives but I suffer from severe anxiety and this has just pushed me over the edge. I have had so many break downs, when I was in the hospital I cried like a baby, looking back on this it is embarrassing. I feel crazy!! I am a 33 year old lady and I have never been in hospital before so I couldn't gauge how worked up I would get until it happened. 

I have been feeling pain in my left lung which I'm sure is normal and I have also developed a cough. It is also very hard to find any position that is comfortable to sleep in. I am experiencing a strange feeling in my lung, it doesn't hurt but it feels like I can actually feel the air brushing against my lungs - that probably doesn't make sense, sometimes it feels like a creaking and it worries me. I tried to explain to the anti cog nurse when I had my appointment nurse she didn't seem concerned. I also can't lie on my back, when I wake up I have a sharp pain in my left lung and can't inhale fully. I have to walk around for a few minutes and push past the pain until I can deep breathe again - after this the pain is gone,

Has anyone else felt these symptoms? I am going to see the GP tomorrow just to check that this is normal but I have searched the internet and can't seem to find anyone that has felt this so it's a bit worrying. Aside from these issues I can breathe fine, I get the odd chest pain and my lung feels sore and a bit below it but I guess that's to be expected.

Thanks 

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14 Replies

  • Posted

    Hello, I was diagnosed with multiple blood clots last year, in my legs, bowel, kidneys, spleen and my aorta! Anxiety is also a problem for me, I think every ache or pain is me going to die! It really does get better however nearly a year on I still have bad days! I also still get chest and lung pains and my last ct scan two months ago showed I’m now suffering from pulmonary hypertension!!! I would suggest that you mention your symptoms and concerns either to your doctor or your consultant! It’s really good that your clots are dispersing which means you are on the mend but exhaustion and walking will take time, I still can’t walk to the top of my road and it’s been 8 months, I’m still exhausted every day, things will get better for you x
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    • Posted

      Paulette, I know exactly how you feel. I think every twinge or pain means I’ve got another clot or im going to die.

      The hospital have sorted out some therapy sessions to help me cope better.

      I’m so sorry about your clots and how alarming that one was in your aorta. It sounds like due to the locations of your clots it may be taking longer for you to recover. 

      Thank you so much for responding. Now I don’t feel so alone xx 

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  • Posted

    Hi Elizabeth.

    Sorry to hear what you've been through. You are very early days into recovery if you can walk 30min you are actually doing really well! I Can't do that yet and in 4 months into recovery from my 2nd lot of PE s. (First time was 2016)

    It sounds like you are being really positive losing weight and making positive steps going forward. Taking time off to rest whilst your body recovers is very sensible.

    One thing is say is expect recovery to be very up and down. You can have a good week followed by a rough few days and even months into recovery you can have bad days where your symptoms relapse. It's so strange like a rollercoaster. One day you can walk 30min another day having a shower is a struggle! But as time goes on the bad days are less frequent, and not so bad as they were, until eventually they are few and far between.

    Recovery time is different for everyone and listeni g to your body and taking it day by day is the most important thing.

    I really recommend the PE recovery group on Facebook for further advice and support from patients. It helps me alot there's always someone there who will be supportive or help with questions and discuss experiences of recovery.

    I would push for a genetic screen. Whilst they have blamed the contraceptive you were on they can't be certain you don't have a genetic risk, so I would request a genetic screen when you come off your apixaban to make sure you are at no further risk.

    I get a weird feint when i breathe sometimes too I k ow what you mean. It's impossible to describe, just a weird feeling in my chest, not pain, just an odd feeling, almost like something is causing a slight vibration when i breathe in my chest, very odd and hard to describe. I onky get it when my breath feels bad.

    Mainly early recovery tachycardia (fast heart rate) was the worst thing and breathlessness.

    That has improved and now it's really breathlessness that troubles me and my heart feels glittery and odd when i don't feel well. Thus comes and goes and good days and bad days very wildly still. My recovery is much longer the 2 d time around though as last time inwas back at work within 10 weeks doing 8 hour shifts in my feet.

    This week 4 months in I did 2hrs at work and really really struggled.

    Anyway, you aren't alone.

    And you will get better

    It just takes time.

    You are not a baby for crying by the way! Its healthy to let your emotions out, having a PE is terrifying, shocking and traumatic, not to mention feeling bloody awful, like you are thrown into a nightmare you cannot escape!

    I too was tearful in hospital when this happened to me again. And on bad days I'm still shedding a few tears, cause it's tough, and you have to let it out. It's important to remember you can be positive for the future and remain positive, whilst allowing yourself to feel sad.

    Take care and lots of luck for your recovery

    Victoria

    Xxx

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    • Posted

      Hi Victoria, 

      Thanks for your response. How awful that you’re going through this for the second time. 

      It’s interesting to hear that symptoms will come and go, otherwise I would probably think my blood was clotting again. 

      I’ve got an appointment with the haematologist in six months to look more into the reason as to why I got the clots and I will also be seeing a respiratory professsor at the same time to assess the damage. 

      I think the feint is what I’m feeling too. No pain but feels strange in the lungs and when I breathe in. 

      I had to go back to work after two weeks as I don’t get sick pay. It was too early for me to go back and work aren’t very understanding so I find that part of my life stressful. Aside from that I’m doing everything I can to improve my health whilst my body repairs itself. 

      I do hope you start to feel better soon and your walks can start beyond your road, everything I’ve read states that recovery is very successful xx

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  • Posted

    Sorry to hear you have had such a bad experience. My first DVT was due to contraceptive pill, while on holiday, spent all week in hospital. Second time 4 years ago, no cause was found for pulmonary embolisms, incidentally had a cough for a year and was fobbed off with "a virus", asthma, whooping cough! Eventually I became extremely breathless, booked GP appt, walked in, he said "you need to be in hospital now". Afterwards I was very weak, walking was so difficult, even shopping holding a trolley was painful and debilitating. I also had pain on left side when in bed, and had several weepy sessions as it was such a shock. For 5 years we have lived next to smokers who delight in coming out to smoke each time I appear because present one thinks I have a "fake cough". Had problems since Nov last year all GPs thought it was chronic bronchitis until I went private. Overall I saw or spoke to 13 doctors from Nov to March. Eventually another episode of PEs in March, thankfully suspected by private respiratory consultant as NHS chest physician told me he did not know the cause, the time it would last and would I get it again, then kept moving my appts further in the year, originally March then July now Sept. Saw haematologist after starting on Apixaban said no DVT but could be again caused by second hand smoke! Still gets me down as I worry if I start coughing or sneezing it might develop into bronchitis or SHS will aggravate my lungs as the intensive coughing for 4 months affected my bladder, badly. This time I am on Apixaban, Warfarin after the 1st, only had one issue, nose bleed while simple gardening last week, husband does the heavier stuff. Was told my energy levels would recover in 3 months, but a blood test showed my Folic Acid level was low, 1.5 instead of 5, another reason for lack of energy. I am sure you will start to improve soon, your clots must have been numerous to have such symptoms. Please listen to your body, if it tells you to rest, then rest. Well done with losing weight, wish I could, put on 10lbs recently. Lost 3 stone when had to go gluten free, kept it off, now lacking energy has caused a gain! Best wishes.

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    • Posted

      Hi Cathy,

      Are you saying you were carrying around a PE for an entire year or have I misunderstood? 

      Your neighbours sound horrendous, how very judgemental of them. They have no idea what you’ve been though. It really does sound like you’ve been through the mill with this condition, so many doctors and getting fobbed off makes me feel lucky mine was sorted within hours. 

      What kind of tests do the haematologist do apart from blood? I’m dreading any needles or those awful CT scans that require a candula thingy. 

      I really hope your energy levels sort themselves out. It’s not surprising really when your body has been through so much. I just feel so awful for you.

      Please take care xx

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    • Posted

      Hi I am not at all sure when the cough developed into blood clots the 1st time but I did the 2nd. I was coughing and breathless for some time before I saw GP 1st time) by which time my face turned waxy coloured and my lips started turning blue! Seen after my shower in the mirror on the Monday but not the day before! This time I reacted quicker by contacting private consultant who saw me in 3 days, was "only" breathless for 4 days as I started to get worried. I had numerous blood tests which showed high d dimer levels, cxr but this does not show clots, 4 days of self injecting heparin then scan with dye passed through a cannula which finally proved it. The nurse put the cannula in the wrong vein so had one pulling it out and another putting one in the other arm! Not too bad really. Only saw haematologist once again, a month later, he showed me the scan, thankfully although several, they were small unlike the time before. No further follow ups needed on Apixaban. My energy levels go up and then plummet. I try and walk, in fact on a recent cruise walked several times round the jogging track and actually lost 3lbs but soon back on as back to snacking due to stress. Our current neighbour said I am old (80 when I was 66 at the time) and will soon die and why don't I go now! She is in her 4th pregnancy and has smoked through at least the last 2 like a chimney. Needless to say there are not many she gets on with as several of us are "older", young child free and we all get along fine! Been here 18 years + they have been here 3 and we don't belong around here, those of us who are older of course. Anyway thank you for your kind words. Hope you get answers soon. Take care.

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    • Posted

      Hi Cathy,

      Your current neighbour sounds really basic, I know it must be very hurtful but just think of all the wonderful people in your life that want you there. I think that this toxic person must have a lot of negative things going on in their life so they are taking their bitterness out on the closest thing - you. Just try your best to ignore them.

      Stay positive, your body has obviously been through a lot and the older we get the longer it takes us to recover. Soon you will have more up's than downs and hopefully get back to your former self. 

      I will be thinking of you xx

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  • Posted

    Just an update, I went to see the GP today about the symptoms I mentioned in my original post. He listened to my chest and took my BP, unfortunately due to my white coat syndrome my heart was galloping at 140 bpm and it was showing high BP. My fitbit has been averaging daily of 70 bpm though, he took it again and it had come down so not too concerned. I explained my symptoms and he didn't seem to think it was normal (his exact words in fact) that I still be feeling pain as he said the clots were getting smaller. The GP played the anxiety card and said I should try to relax because I told him I felt it more at night and when I woke up. I did say that I feel pain through the day but I am upright and everything is stretched out lung wise, I still get back pain and that funny feeling in my lungs. It's just when I relax and try to sleep it hurts a lot.  I don't deny that I am anxious but I know what I feel. Everything I have read from people suffering from PE'S have said that the pain can come and go and last a very long time but this GP really didn't think it was normal.

    Any thoughts?

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    • Posted

      Hello elizabeth,

      Are you feeling better now, are your symptoms subsiding, you had so much going on and I appreciate how frightening it is.

      I was diagnosed with clots in the lungs 4 weeks ago.

      I had been breathless for a few days, then got an incredible pain under the breast, went to the doctor who thought it might be clots, I had a hip replacement 8 weeks previous, he said it was unusual after 8 weeks but possible. Doctor sent me for an x-ray but on the night, had to call an ambulance as the pain went all around the body. A strange thing happened then, the pain swopped sides! The pain was so bad when I tried to breath in.

      The following day after a CT scan I was put on apixaban for 3 months. Double dose (2 x 2) for the first week. I still feel breathless at times mainly when I get anxious or I get anxious because of the breathing, feel sick, and get dizzy. The doctor at the hospital said part of my lung had collapsed but that will recover. I am hoping it has not damaged my heart as they said there appeared a problem on the ECG.

      I am normally a fit and healthy 61 year old who does not take any medication, exercises most days so this has really upset me and I wish I had never had my hip done, I could have lived with it. It is a very scary thing to happen, having my hip replaced was my first time in hospital sadly, not a good outcome.

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    • Posted

      Hi Jen I’m so sorry to hear that you’ve had to go through a hip replacement and now a blood clot! Apixaban is an incredible drug and I have been on it for six weeks with no side effects to date. When I was diagnosed I felt extremely sick and breathless too, it was a good week before I could eat again. I asked the Dr why this was and he said it was because My body was in shock and I would feel better when I was more comfortable at home. They gave me anti sickness tablets, have they given you some? If not then ask. I am doing better thanks, I have had bloods took last week and been told all normal levels and I saw the GP again who told me my chest is clear and the clots are getting smaller. I still get paid, feels like I have to break through to part of my lung when I breath in and panics me when I can’t - usually when I’ve just woken up. I have extremely bad mental health issues as a result of what’s happened and have spent a long time on the phone to the Samaritans at all hours of the night. My GP has put me on anti depressants to help me get through this dark period and she is monitoring me, the hospital has also referred me for counselling. With regards to heart damage I believe it’s natural to have occurred to some extent, they said my lung and heart is also damaged and I have to see a respiratory professor in a few months to check things. Whilst you’re recovering just be kind to your body, rest when you need it and don’t push yourself. Trust in the medicine and if you aren’t sure about anything just ask, I’ve found the hospital and even pharmacists to be extremely reassuring and helpful. I hope you feel better soon! 
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  • Posted

    I have just read your posts and would like to say I was on apixiban and I was very symptomatic from my PEs. I had the constant fight/flight fear feeling, severe chest pain, breathlessness and rapid heartbeat as well as bad headaches and nausea.

    I was swapped to tinzaparin (innohep) injections and within a couple of days my symptoms were much better. The major anxiety feeling got better as well. I hate injections, but I would take them over major anxiety and bad pain any day. I still get symptoms but much less extreme and they tend to be at certain times of the month. Keep a period diary and you will probably notice when you ovulate and just before menstruation your symptoms are worse. I still struggle to take deep breaths in occasionally but that is probably down to the inflammation. 

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    • Posted

      I think I’m feeling the same

      Thing at the moment. Inflammation in my lung as it feels like I have to break through to that part of my lung when I deep

      Breathe x 

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    • Posted

      I remembered this thread and I was wondering how you were getting on because you were struggling a lot. I hope it is getting easier for you. 
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