I had a huge pulmonary embolism nearly 2 years ago and have scarring on my lungs. Still nearly 2 years on I can’t do much like I used to. I get so tired and can’t breathe if I stand too long. Hoover, walk. Anything really. I also feel dizzy if I do too much. Sometimes I feel I’d rather not be here than feel like this all the time. Having a bad day today. Does anyone else feel like this?
Tired n breathless all the time - Anticoagulation UK
I was on holiday during September, after being diagnosed with several small clots back in July, and found that whenever I did too much, I paid for it next day in exhaustion. Normally, if we are out and about, I walk with trekking poles to enable me to go that much faster and keep up with my husband, who is one of those infuriating men who runs everywhere, even when they think they're walking slowly! This time, though, I found that my lungs simply wouldn't keep up with my legs, so after the first walk, the trekking poles were left behind. The consultant said it would take at least three months to begin to feel better, and I think he was right.... I'm now waiting for the results of further tests to see what improvement, if any, there has been.
All of which to say, hang in there, and tell your consultant about it. They may well be able to give you something to help - after all, they give things to people with asthma, so who knows?
You have my sincere sympathy Caztratt. Thirty years ago I experienced the effects of having an enormous PE, followed by two more within 2 years of the first. The largest one remained in my lung and has now become fossilised or whatever the medical term is. It will remain there now forever and is the reason why I have never had the stamina to do the things I used to do. Do what you can do and try and enjoy life around the physical difficulties you have. Anne x
Hi Anne. Thank you so much for your reply. I didn’t realise you can still have another PE even though you’re on anticoagulants. My sincere sympathy goes out to you too. It is so hard to come to terms with after being physically fit. I really don’t feel right so I’m going to docs today. I really do hope there isn’t another one lurking there. Thank you. Carol x
Hi Carol. I hope you got on well with your GP and that they can offer you some comfort and confidence. There are many things I learned about PEs since I had my first in 1987.
1. PEs need not have any symptoms. Mine didn't and they are called Occult Pulmonary emboli
2. It is vital to have confidence in your haematologist. Has he/she set your INR target correctly and in line with your physical history and perhaps family history of vascular problems.
3. Has your haematologist taken a full family medical history to see if any other members of the family have had clots. If so, has the haematologist tested for a genetic problem causing the blood clotting.
4. If there is a genetic cause do you inform the medical team treating you in hospital so that they are aware of your need for special blood clotting protection.
Lastly, when someone asked me what it was like to have a PE I told him it was like going 10 rounds in the boxing ring with Mike Tyson and I lost all 10 rounds!! My local hospital was not at all good and should have kept me on Warfarin for ever after the first PE. It was only when I had had three PEs that I realised that my father and his brother had died very suddenly and very young and without the attendant pain of a heart attack. I warned my daughters to raise the query of familial PEs if they needed medical treatment. When they tested one of my daughters at a leading London hospital and found a genetic flaw, plus an antiphospholipid syndrome component that I was then tested and found to have the same problem. It was not the usual Factor 5 Leiden gene but another which was only discovered in 1993. For the sake of our children and future generations and I do feel that people who have had serious PE problems should have a genetic test so that our children don't have to suffer what we have gone through.
I am sure that even if I had lost out in a boxing fight with Mike Tyson in 1987 I would have recovered and would not be in the frustrating and depressing physical state I find myself in now, Carol. PEs pack a punch. Anne x
Thank you for your reply. I’m going to see my doctor today. I hope you are feeling ok. If you want to talk I’m a very good listener x
I suffered this too. It has taken me a year to get to a point where I now accept that I will not be able to do things anymore. Some days I feel useless.
I’ve been dealing with Spindylotheisis for some years. I’m tired of the pain. Im tired of being poor, being punished for being disabled. The fact that I cannot walk much, am breathless, in pain. Makes life difficult enough.
It’s even worse when your alone, because the DWP will punish you by taking away your income if you fall in love. They expect your partner to take on fulm responsibility for your finances leaving you with just the PIP income.
All the time. Good days, not so good days. The way I look at it is that something will get us sooner or later. PE is the silent killer - at least we know what the signs are and what to do if it comes back!!
Hi there, yes I feel like that too. I had clots in both lungs back in Feb 2018 and I've been waiting for my body to feel like normal ever since. However, this has just never happened. I feel like all my stamina drained out of me the day I was admitted into hospital and now I'm existing as a shell of what I once was. The only thing that keeps me going is my family and the knowledge that there are good days where I feel a little better and so make the most of these times. I had major back surgery in 2012 and was back at work within 3 months. I have never worked a day since having the PE. I accept that this is my life now, that I'm lucky to be alive - a close friend passed away this year from a PE, at the age of 53 - and that it is alright to feel down/frustrated/angry, but also to enjoy - perhaps more than I did before - the little things in life and to take each day as it comes.
Hi Angi. I’m so very sorry about your friend. I can totally relate to how you feel. I hope things get easier for you over time. It’s not fair how it changes your life but as you say take one day at a time xx
Thanks for all your replies. I have spent the day at hospital following a suspected PE. Luckily they never found one but I now have to go for a CT scan and have been told I may have COPD. How on Earth can this happen 😳😳
Hi Caztratt. I too have spent the afternoon in hospital for PE tests and X-ray - they think it's a PE or COPD. My father had the first and my brother has the second. I'm just hoping I haven't got the full set! It's all very scary. 😳
Hi Musicelf. It is very scary. I do hope the tests find the problem and they sort you out quickly. Let me know how you get on
I'm the same. Had multiple large clots in both lungs just over 2 years ago, unprovoked and I didn't present for PEs - took 2 weeks to diagnose me. Got out on warfarin, and long story short, 4 months later they discovered all the large clots were still in place. I was then switched to rivaroxaban, but I've been left with mobility problems and 'multi-faceted' breathing problems. I too sometimes wish I'd gone out in a blaze of glory with the clots rather than live as I do now.
It can be very hard some days. Permanent scarring is crap!! I have had my inhalers changed and I does seem to be making a difference. Not been able to do what you used to do is very very frustrating!! I suppose I’ll never get used to that but at 46 years old I’m gonna have to. Hope you’re ok
I get very breathless too, and can’t walk very far! Even round a shop! Take it easy.
Yep. I know how that feels. You take care too. It’s nice to talk to people on here that you can relate to, as people look at you as though there is nothing wrong with you cos you don’t look physically ill and as tho “why are you walking soooo slow” 😔
Hi MuzzyB, i was told to have PE follow a chest pain, but trough investigations I was told I suffer of COPD, at medium stage that I find hard to go up stairs & walk long distance, warts still after a meal. I use an inhaler INCRUSE, and a Ventolin spay in case I get breathless. If I sit, with a minute a fall a slip, so I thought it was to do with my present situation, but no, i also suffer from APNEA, another prob that is due to a blocked airflow that stops me of breathing during sleep. This is a new illness to my knowledge and need to be investigate.
I hope that something can be done for this, but from my understanding at moment no very much can be done to cure it..
I also have a really bad back! So do use a walking stick! But totally agree if I had to sit down when breathless people do think like that! It’s really poor!
Yes, after having a PE, 4 years ago now, I remain heavily fatigued and get breathless , even doing basic chores. I can't do what I used to.
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