l'm new and very worried

l was diagnosed with bilateral PEs following a keyhole shoulder surgery 6 weeks ago. This changed my life upside down and has left me very worried. l was not given any blood thinners during surgery as the consultant said the surgery was upper limb and low risk. A few days after surgery, l developed stabbing chest pains and shortness of breath, my locum GP sent me to hospital straightaway for examination and l was given clexine injection albeit too late, as they found bilateral PEs. I was prescribed rivaroxaban for life and when l asked if the PEs will dissolve, l was not given a straight answer, but they told me it was important to take the blood thinners to prevent further clots forming and l sent home with no further information or support. I had no knowledge of PEs other than they can kill you and l thought l had been given a death sentence and was going to die any minute. Following days were a nightmare as l started to dig out my life insurances and my pension documents and wrote notes and messages for my children as l thought l was dying. Chest pains continued and was in and out of A&E. l had bad reaction to rivaroxaban and was changed to apixaban which was much better. I still experience chest pains and this is worse at night and unbearable and been to hospital again. Anxiety? Not knowing what to expect causes stress and fear of uncertainty. Question is when do the chest pains stop? Will my body breakdown the PEs or not? If so after how long? Will l be able to go back to work and live my normal life? Will l be able to fly long overhaul journeys of 10hrs? My shoulder recovery has taken a back seat as l deal with this life threatening situation and l am at my wits end as there is no support, advice and l am angry and in a dark place at the moment. I have asked my GP to refer to chest specialist with the hope that l will get some information, GP appears to be limited. Has anybody had something similar and have any idea what l should do or ask my GP to do. Prior to this l was ok, pre op assessment was ok.

12 Replies

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  • 98% of people who get PEs make a complete recovery. So the statistics are on your side. The crisis point is over for you as they passed through your heart without killing you. Sorry, that is maybe a bit blunt? I consider that the surgeon was negligent not to give you anti-coagulant therapy at the time of your operation. The same happened to me, but my op was high risk for PEs, hip replacement, and I had told him there was a history of thrombosis in my family. If you are still getting pain I think you should be followed up. Have you got a consultant and follow up checks? It is generally understood that the body goes into anti-thrombosis mode and clears up the clots in about 21 days. Maybe another CTPA scan to check that the clots have gone? I can only stress that it is very unusual to have permanent damage from PEs. But that won't stop you worrying.

    Nudge for more help and advice.

    All the best

    K

  • P.S. I am by no means an expert but my story is similar to yours and I am happy to keep in touch.

  • Thank you, how are you keeping on? What are your experiences?

  • The chest pain eased but the breathlessness continued. Because for me the damage was largely in the tiny blood vessels, extensive, multiple, bilateral PEs, it took some sorting. And when that happens it does not show on CT scans. Unfortunately, as well for me, the damage in the blood vessels caused damage to the small airways. If you look at my profile you will see a very brief history. I have to say it took a very long time in my case to get a diagnosis but if the doctors are vigilant and do the right tests then you should have some reassuring results. But, please, take on board the fact that my case is very unusual. And nobody has ever come across a case where PEs caused Obliterative Bronchiolitis. Unique, me. And I'd rather not be!

    It may feel like an age since you were originally diagnosed with PEs but in the timespan of these long term conditions it is still early days. There is every chance that things will improve.

    What doctors have you seen?

  • l am sorry for what you went through, l hope that you are getting the right treatment after a long time. 6 weeks of nightmare and now trying to live my life around the PEs. l am grateful for this site as we can share our experiences.

    The only doctors at the moment is either my GP or A&E doctors. l would like to be under a clinic for Pulmonologists who understand what is going on and who will carry out test and examinations to monitor every step of the way.

    Mel

  • Hi K,

    Thank you for your reply, it made me feel better. l have no consultant at the moment, however a referral has been made to a chest specialist and still waiting for appointment, hopefully l will get a consultant. l hope l am not referred to the mobile clinics as they are limited what they can do sometimes. With the new anti cougas tablets (riva and apixaban) there is no follow up or review/clinics and when l asked my GP, he said no follow up scan will be carried out again. So not sure how to find out. Thank you for your reassurance, there is more clarity in your reply than from my GP and treatment centre. l will press on being checked as l am still getting pains 6 weeks later, Once again thank you.

  • There are two tests that you may have had. One is a V/Q test, good for seeing where the blood is not flowing properly in the lungs. And the other which you should have had is an echocardiogram to check to see if the clots caused Pulmonary Hypertension.

    K x

  • Echocardiogram was mentioned by A&E during my last visit, and they said that there will recommend to my GP in their discharge letter. l had an echocardiogram as part of pre op assessment. Who do l ask for these tests. Sometimes it feels like l am being dismissed and expected to have these chest pains because of the PEs, however, doctors do not feel our pain and might miss out on something different that may have been caused by the clots.

  • When you see the consultant ask for an Echocardiogram. There are some tests that GPs can't request. That may depend on the area. Was it an Echocardiogram or an ECG you had pre-op? ECG would be routine for pre-op, but not an Echocardiogram unless you had some underlying heart issues. There is one route they might go down: you are obviously finding the situation extremely stressful. And PE chest pain does affect the way we breathe, I found it painful to breathe deeply and so I was using the upper part of my lungs. Which can lead to hyperventilation, and dysfunctional breathing. If they suggest this is happening then they should refer you to a respiratory physiotherapist for help to breath properly. Take the opportunity if that happens, good breathing will always help, especially anything panicky. And it won't do any harm if that isn't the problem.

    Good luck

    K x

  • I had both ECG and Echocardiogram during pre op. No heart problems were mentioned they told me that l needed an echocardiogram due to age and weight. l am 54 years old and a bit overweight. l still have shortness of breath and its worse if l climb up and down stairs and when chest pains are severe l get palpitations, hence l go to A&E frequently. l will visit my GP again and find out if there is anything they can do or more test, however l am not holding my breath as they are likely to say that l should discuss with the chest consultant. l am in Manchester area and just got a letter to book appointment with integrated care gateway? l would have preferred hospital appointment and not mobile clinics. Thank you for your comments and advice.

    Kind regards

    Mel xx

  • Hi, good idea to phone the BLF helpline on Monday as they can be of great help to you.

    Phone no. 03000 030 555

    Good luck xxxxx

  • Thank you for your advice, will call BLF helpline on Monday

    Kind regards

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