Multiple Embolisms

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

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.

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?

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.