PE breathlessness

Hi, I suffered with unprovoked multiple bilateral PE in October 2014, was put on walfarin lifelong though switched over to rivaroxaban about 10 months ago for ease of management. I still find that I'm pretty much constantly short of breath and often feel fatigued. I'm beginning to lose confidence in my consultant and the NHS in general. I've had a couple of mri, cat and vq scans. The most recent vq scan did not show any blood clots but did indicate "ventilation issues" I pressed the consultant for more information on these but she said she had no further information at that point???

 At my next appointment she still could not shed any light on the "ventilation issues" but would organise a HD cat scan to see if this showed up anything? She then said that if this was clear she was then at a dead end as she had investigated everything available to her and that the next cause of action would be to refer me to a specialist in London and also went on to say there were actually clinics in London for patients that continue to suffer with breathlessness after pulmonary embolism. 

This all seems very vague and a bit hit and miss, is anybody else in the same situation and could offer any advice?

I'm a 46 yr old male and prior to the PE was in relatively good health.

Thanks in advance.

11 Replies

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  • Your right, it sounds very vague. Try contacting the BLF nurses on 03000 030 555 during office hours. They are incredibly helpful. Good luck.

  • Hi Toci and thanks for the reply I will certainly give them a call

  • Hmmm....  All very familiar.  If you look at my profile you will understand why I sympathise with you.  I had an MRI scan done at one of the units that specialise in pulmonary hypertension (a PVD Unit).  They (the experts in the subject!) said there was no thromboembolic disease, (unresolved PEs which can cause PH).  It took another three years for a new consultant in the same unit to look at that scan, and say, in all innocence, that my chronic thromboembolic disease (CTED) had not changed in the intervening three years. Also a year before that revelation I had a CTPA scan in another hospital; the written report on the scan by a consultant radiologist said no CTED. A year later the same new consultant at the PVDU saw CTED in that CTPA scan. A year ago I had a High Resolution CT scan (HRCT), the consultant radiologist saw no air-trapping. I asked for a second opinion: and another radiologist found air-trapping.  A pulmonary function test, a year later has shown severe air-trapping. 

    So , as you will appreciate, I have become very sceptical of the skills of consultants and radiologists at interpreting the evidence on scans. 

    Try politely pushing for second opinion(s).  I believe that CTED may be more common than the doctors think.  

    I think they have a special unit at the Royal Brompton investigating unexplained breathlessness. On reading your past again it looks as if your doctor is thinking about one of the PVDUs in London. Hammersmith has one as does the afore mentioned RB.

    Let us know things go. 

    K xxx

  • Always ask for a scone opinion why you get a consultant who says thy can't say at this point or they are at a dead end.  Glad they are thinking of referring you to London.  Hope they get that done quickly and you get a definitive diagnosis.  We have to remember that we can't always get a definite diagnosis but when they are bouncing around from one thing to another depending on who you ask and when like they are with you you need second, third and fourth opinions.

  • Hi freefaller yes I think I defiantly need a second opinion 

  • Sorry about the auto correct of my over fast typing! 

  • Hi Katinka that's given me some food for thought.

     Not too sure how I would go about getting a second opinion as my GP is just very dismissive, the last time I saw him I explained my concerns and his response was to pull myself together, the blood clots had gone and my recovery time (18 months so far) was par for the course as its a very serious condition. This is also the GP who missed the fairly obvious symptoms of PE telling me it was probably just a viral infection and that I had exceeded my 15 minutes allotted appointment time??? Made me thankful for my nationally recognised under performing A&E department and health trust.

    My initial thoughts after I qualified as a Google based internet doctor was PH but the consultant has assured me this is not the case, your post has certainly made me aware that consultants etc are not always right something that hadn't actually occurred to me. I will now ask them to investigate the possibility of thromboembolic disease. 

    I had the HR cat scan over 3 weeks back and as yet have not been able to find out the results, I called the consultants secretary today only to be told she was covering a different hospital and they were behind with admin due to the strikes??

    Is it possible to bypass my GP and ask for a second opinion? How do you go about arranging your second opinions?

  •  Katinka that's given me some food for thought.

     Not too sure how I would go about getting a second opinion as my GP is just very dismissive, the last time I saw him I explained my concerns and his response was to pull myself together, the blood clots had gone and my recovery time (18 months so far) was par for the course as its a very serious condition. This is also the GP who missed the fairly obvious symptoms of PE telling me it was probably just a viral infection and that I had exceeded my 15 minutes allotted appointment time??? Made me thankful for my nationally recognised under performing A&E department and health trust.

    My initial thoughts after I qualified as a Google based internet doctor was PH but the consultant has assured me this is not the case, your post has certainly made me aware that consultants etc are not always right something that hadn't actually occurred to me. I will now ask them to investigate the possibility of thromboembolic disease. 

    I had the HR cat scan over 3 weeks back and as yet have not been able to find out the results, I called the consultants secretary today only to be told she was covering a different hospital and they were behind with admin due to the strikes??

    Is it possible to bypass my GP and ask for a second opinion? How do you go about arranging your second opinions?

  • To be honest it isn't easy. I am not very forceful. But I am clear, rational and my experience of the nightmare of the past six years has taught me to clarify what I want from doctors. I was very pleasantly surprised by the reaction of my LLC (Lovely Lung Consultant) when I very tentatively suggested a second opinion.  He was so quick to agree that it seemed he already had another radiologist in mind to assess the HRCT. "you can have third and fourth opinions."  

    Keep a record of all appointments, notes on what was said, insist on copies of the results, and written records of them. 

    I think eighteen months is too long for recovery from PEs. There are two possible conditions: 

    CTED, chronic thromboembolic disease

    and CTEPH, chronic thromboembolic pulmonary hypertension. 

    98% of people who PEs make a complete recovery, so doctors tend to assume that will or has happened.  If the clots do not resolve then most people develop CTEPH. I think CTED without PH is less usual. I think some doctors do not realise that you can have CTED, and dismiss a patient's concern if there is no apparent PH. 

    I was repeatedly told I did not have either, but I was convinced I did, and I was right. 

    Bit of a bugger about the consultant's secretary.  They are so often key to all progress and can be invaluable. You can usually email them. Some people can email their consultants. Haven't asked to do that though I should dearly like to.

    The second opinions I have sought are to do with interpretation of scans, ie the radiologists.  To get a different consultant you would have to through your GP. I think you need to start by getting a new GP. Are there any others in the practice who would be more sympathetic and helpful?

    What are your symptoms?

    K xxx

  • I thought that a CT scan is not accurate for detecting chronic non-occlusive blood clots. I also suffered Saddle PE a few years ago and still suffer from chest pain and shortness of breath. I just failed a lung function test and have severe restrictive lung function. Even with this, the doctor does not believe it is CTEPH. My PCP kept telling me for four years that lungs do not feel pain and that I should not be experiencing complications this far out from a PE, but I am. I take pain medication for my DVT leg that has post thrombotic syndrome, and even when the meds dull the pain in my leg, my chest still hurts enough to make it hard for me to sleep. I also have to continually fight off the urge to run back to the ER every time the pain cranks up for fear of another blood clot. I really hope to find something out soon. All I wanted was a lung function test and a echocardiogram. I finally got the lung function test after years of asking. I also have some abnormal ECG's that show non-diagnostic left ventricular hypertrophy. There is something going on, but it keeps on being dismissed by my doctor. I hope the rest of you fund some answers soon.

    J

  • Morning Sirclotsalot

    Only by saying that did I realise the significance of your user name! Very clever. Are you on Warfarin or come sort of anti-coagulant? If so then there should not be any risk of further clots. What is Saddle PE? CT scans can show CTEPH and CTED, but a normal scan does not rule out these conditions. As you can see from my response to Agius, radiologists differ about what they see.  The first radiologist who failed to see evidence of CTED in my CT scan even now still can't see anything, but wrote to apologise to me for failings in his department and was prepared to bow the superior expertise of the super-specialist radiologists at the PVDU in Sheffield.  The tests for CTED/EPH are V/Q scan which would show areas of non-perfusion with normal ventilation. An entirely normal V/Q rules out CTED/EPH. The tests for Pulmonary Hypertension (the PH in CTEPH) are Echocardiograms, which may show a distended right heart, raised pressure in the right atrium from observing the tricuspid regurgitant jet, and dilated inferior vena cava. ECG may show abnormalities which would be consistent with PH. 

    It does not seem right that you are still suffering from the PEs so long afterwards. 

    Push for more information. 

    All the best

    K xxx

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