Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hello.. This is my first post in any kind of support group, but I'm looking for a bit of guidance/reassurance if anyone can help.
I am 25 years old, and one month ago was taken to A&E with chest pains. I was subsequently diagnosed with multiple bilateral pulmonary emboli and started on Rivaroxaban. I have my first appointment with Haemotology this month so they can do tests to try and determine what's caused it/if there's an underlying condition.
I'm trying really hard to stay positive but I'm finding it so difficult, I already suffer with depression and anxiety and have done on and off for around 7 years. I take medication (Sertraline) and felt fairly okay in myself up until this happened, but I feel the two together are really impacting on my health.
Essentially, I'm signed off work for the forseeable future, waiting to start a new job (who may or may not take me on now my health has changed), with no income, and I'm quite scared for the future. Has anyone else had this so young, if so what is the outlook? Will I feel absolutely fine and get my life back in a few months, or is this likely to affect me for a while? I understand it's different for everyone, but the thought of struggling for the rest of my life is very daunting.
I feel really silly admitting that I'm struggling to my friends and family as I feel like I have no reason to be worried/that my concerns aren't really valid. A lot of people have it much worse than me so I should just shut up and get on with it, right? Typical depression style thinking kicking in there.
Thanks so much in advance.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
I am on Xarelto/Rivaroxaban too for 6 months then they will take me off for 2 weeks & do gene testing to see if I have anything hereditary that could have caused this.
I also suffer from depression & anxiety & am on quite a few meds for this.
My mum is a nurse so she has been a good source to sort of rebound off to check if I'm being silly with concerns or if its justified.
I said it wasn't an option to not work, I simply couldn't afford to, I live on my own with my dog so I can't just not pay the bills. I reached an agreement with my GP of max 4 days a week work so I've been having Wednesdays off so work 2 days, Wed off, work 2 days, weekend off. It's still been utterly exhausting. Apparently this exhaustion can last up to 2 years while our bodies heal. I sure hope it doesn't take that long though!!!!!
I can imagine work is so exhausting. And 2 years?!?! Fingers crossed you feel better much sooner than that.
Thanks for your reply. Hope you feel loads better soon.
My concern with work is that my last job has now ended and I am due to start a new job in the next few weeks (this was all planned before I became unwell), however after speaking with my new job they now seem reluctant to take me on as my health has changed.
I was given the ok to go back to work as soon as I wanted because I had an office job. I went back to work within a couple of weeks after diagnosis, part time for a week and then full time after. Not going to lie. It was hard. I was exhausted and by no means back to normal. But it was good for me psychologically, plus I think too much down time makes it that much harder to get your conditioning back. Also, chest pain post diagnosis is not uncommon post diagnosis. I had more chest pain after diagnosis than when I was diagnosed.
If you wait to start feeling a 100% back to normal to work, you will be waiting a while. I started feeling pretty good at about the three month mark, and felt very much back to normal except for some residual breathing issues due to weather, by 6 months.
The anxiety and stress is a bear. You have to really take control of that because it will amplify any chest pain, shortness of breath, fatigue etc you are experiencing as part of your recovery.
Recovery is hard but you will recover. I was almost twice your age when I was diagnosed and I’m completely fine. My PEs were 10 years ago and seriously, I’ve lived really well since. It’s those first few months after diagnosis that are a struggle.
Hang in there. Try to reclaim some sense of normalcy. It’s really important.
I do think it's more my mental health I'm struggling with more than anything at the moment, which is then impacting on how I feel physically. Due to my existing mental health issues I do tend to view things quite negatively (as hard as I try not to!), which I know is making me feel worse. I was adamant not to have too much time off work as I knew it wouldn't help me mentally, however my previous job involved supporting vulnerable adults with complex needs which was emotionally and physically demanding, and my doctor did not want me to return. The worry of my new job offer being withdrawn is also making me feel very anxious, but I guess that's something I will have to deal with if and when it comes to it.
However, talking about it and hearing other people's experiences definitely helps. I think I've struggled to deal with the shock of it happening too, as it happened during a weekend away so I ended up in a hospital 200 miles from home and on my own, which was daunting in itself. I feel like I haven't really had anyone to talk to about it all so even just writing it down here makes me feel that bit better.
It's great to hear that things have been good for you since, and it gives me that bit of hope and reassurance that I'll feel fine in a few months. So thanks again, I really appreciate it.