So breathless when will it improve?

[Dizzysal]

Just over 2.5 weeks since diagnosed with pulmonary embolismd and discharged same day. Frequently breathless for hours, lousy sleep and runs of fast heart beats occassionally. Oximeter 95 to 98. Blood pressure ok. Any feedback appreciated with ideas of length of time for recovery

[Hidden]

Alas, it takes longer than you would believe possible. You just have to take it one day at a time and lean your limits as best you can.

[Dizzysal in reply to Hidden]

Many thanks for response. Have you suffered similar problems? Details about symptoms/recovery are not easily found either from hospital or online.

[Hidden in reply to Dizzysal]

Alas, yes. I had unprovoked multiple bilateral PEs about 19 months ago - not life-threatening, thankfully, and then had high blood pressure (which I might have had anyway) and tachycardia, but all tests were normal, so prism just a result of the PEs. Do get breathless very easily and have to pace myself or I get exhausted, but it does improve over time. Mostly I'm fine now, except when I overdo things and then I'm not.

[Dizzysal in reply to Hidden]

I have the same and it has taken 5 weeks to diagnose only came to light due to tachycardia and a visit to A&E before that it was diagnosed as asthma/respiratory virus. I realised PEs could be fatal but never realised the long-term suffering people went through. It seems no wonder there is little on line about recovery issues. Did however read about respiratory exercises being tested and proving good results. I can't see that being standard procedure here in UK. I am glad to hear you are slowly feeling better and hope this continues. Thanks for the help much appreciated.

[mestala in reply to Dizzysal]

Well,how long is a peice of string.I'm sure everyone is different.I had multiple emboli in 2012,and was in intensive care for 8 days,''life threatening''.truth is I've never recovered fully.Mine was probably an extreme case,everyone is different.I was 59 when it happened to me whilst living abroad,I was as fit as hell,and to this day knowone knows what caused them,just got up one morning and short of breath and down I went,that was the only warning,''feeling a bit faint''.

I think when you talk to many people,quite alot had them come about in different ways,and some recover quicker than others depending on the severity.

I do know sometimes you need plenty of patience,which I didn't have at the time.It can be life changing,''was for me'',and still get frustrated.

It plays mind games with you,and I get paranoid still sometimes,because I never want that feeling again of what I refer to as dry drowning.

Sorry for my slight pessimistic outlook,but it does really affect people in different ways.

Just try and be patient...take your time...and good luck

[Dizzysal in reply to mestala]

Thanks for the reply I can associate with the dry drowning. I think the hospital gave me the impression of take the tablets and you'll be getting much better in a couple of weeks. I know better now and have to go with the flow.

[AndySD]

I have to agree with mrsredboots and mestala. It takes a long time to recover.

I am now two years since my first symptoms of extreme fatigue and breathlessness. Over the two years I have recovered to a new level then stalled, recovered a bit more then stalled, recovered more etc etc.

I can now ride a bike for short distances, travel on planes for holidays and work a full day and commute. However it has taken months of patience and slow building up. Psychologically it has been tough. I was very fit and full of energy. Now I have learned to take things slower. I dropped to four days work per week.

The good news is you will recover! Support from family and friends and this chat room too is invaluable.

Good luck. Take it slow. Take the tablets. And keep in touch 😀

[SpeedyH]

Exactly the same with me. Two years on and I am still breathless and exhausted. However, I have recently seen a respiratory physiotherapist and really recommend this route. When you have a condition like pe your body learns to breathe with a different pattern to compensate. This becomes established and carries on long after the original cause has improved. One very common pattern is hyperventilation syndrome, which results in a huge range of symptoms like pins and needles, memory problems, sleeping issues etc etc. Just as it takes a while for the bad breathing patterns to become established, it takes even longer for the brain to become retrained to good breathing through exercises. Perhaps google ‘breathing exercises for hyperventilation syndrome’. Dinah Bradley has written ‘hyperventilation syndrome, breathing pattern disorders, and how to overcome them’ which I recommend.

[AndySD in reply to SpeedyH]

Very interesting I will take a look, thanks for the information

[Dizzysal in reply to SpeedyH]

That sounds completely understandable. I have been monitoring my oxygen levels whilst breathless and they are 95/97 which makes me think there is something else at work here on top of PE. Exercise seems to help and not getting anxious (haven't quite cracked that!) There has been some research to show that survivors are still breathless despite good recoveries - hope this leads to more understanding of the condition and better aftercare.

[SpeedyH in reply to Dizzysal]

Yes, I’m the same with good oxygen levels. I have recently been diagnosed with ‘webbing’ in my pulmonary arteries which are fine fibrous structures which develop as a result of the clots. I was told this is very rare but I’m not sure that that is the case - most people do not have a follow up ct scan after clots so this condition probably goes largely undiagnosed.

[motorbike in reply to SpeedyH]

I have only had one lot of blood since last April , not going to scan . I had PE mass and DVT in leg . Strange isn’t it

[Kravco]

It does take a very long time to recuperate. I had bilateral Pe over two years ago and I still feel tired all the time. I have difficulty sleeping and have periods of breathlessness periodically. Take one day at a time.

[nossib]

We are all different in our recoveries but like many of you, even 5 years later from my PE, I suffer daily from breathlessness, doing chores, walking, can't hurry

Has anyone heard of Vocal cord dysfunction, where one has SOB & difficulty getting air into the lungs, cough. A friend who was diagnosed wth asthma 40 yeas ago has now been told she never had asthma, she had this! Wondering if even ths can be triggered by other things, even a clot.....with health, anything is likely!

[motorbike]

Hi . I had Pulmonary Embolism. Mass plus a DVT inLeg . I was breathless for months, also if it’s windy , I still get it . It’s much better, it’s a Year next month . Hope you feel better soon

[Hidden]

It's different for everyone how quick you recover but just take it a day at a time.

I found the psychological impact was worse than the physical one myself.