5 months after my PE and anxiety is worse than ever , please help

Hi Steve,

I totally understand. I had PEs two weeks after my leg and knee surgery on 10/20. Hospital for three days. I was lucky to have woken in the middle of the night. Many people die in their sleep from the clots. For about a month I was so paranoid and anxious about every little twinge and pain I felt. I still feel that way, but not nearly as much as I did before. Now that I've weaned off all the opioids from surgery, everything seems to be better. But even still, I worry. I don't have advice for you, really, but just wanted you to know that you're not alone. I have four children between 12 and 18, and I can't help but worry!

Hi Steve, most of us who have had PE's have been hit mentally as well as physically. I think it's difficult to reconcile the seriousness of the diagnosis while trying to recover physically.

My PE's were in February and I'm now looking forward to the year's anniversary. I've recovered well but it wasn't easy to start with.

As everyone's experience is different it's difficult to assess the path you'll now take but I certainly agree with others that the more you understand your particular condition the better chance you'll beat it. I had an appointment with a haematologist and also one with a vascular consultant. I made sure I got all the information I could about my PE's so I could try to work out how much exercise I could do and how I might recover.

id suggest trying to find as much information as possible is a good idea. What we know about is usually less scary.

two of my children are also on anticoagulants as we have a genetic issue. My eldest Son felt that Rivaroxaban was giving him mood swings and he's switched to Apixiban and feels better. My other son seems comfortable on Rivaroxaban.

Here's my thoughts - you're on anticoagulants now - I'd think you're safer than ever. Your body has already survived the PE's so the most difficult bit is over. If you do gather all the information, including genetic testing and understand why you were hit with these you'll have the best chance of beating the anxiety.

in a way it has been different for me as I was misdiagnosed for three months while I got more and more ill and confused as to what was happening to me so it was actually a relief when I was in hospital, struggling to breathe and they found my PE's. I actually thought it was going to be much worse news.

try to stay positive and think about how far you've come since July.

Steve R

Hi Steve,

Sorry to hear of you getting PEs - it's not the best way to spend your summer.

I am afraid to say information on PE recovery is shockingly scarce, so searching online is pretty much the norm. As a researcher in previous times, I can safely say that the information that hits the internet tends to be the more extreme ends of whatever you are looking into, so take heart in the fact it is scary, but perhaps not THAT scary. Also, you almost certainly know the cause - I don't buy the medics' assertion that the surgery may not be the cause..........

For the anxiety, I am given to understand it is one of the symptoms of a PE (I crashed and burned from anxiety a few weeks before being diagnosed) and it lingers afterwards.......I spent 6months leaving the doors unlocked so someone could rescue the dogs when I popped my clogs in the night (now I look back, I must have seemed as jumpy as a box of frogs).

I would suggest you speak to someone about it if you can, but I am afraid you are going to have to push for it. I found haematology tends to be much more forthcoming than pulmanology. Maybe because pulmanary diseases tend to be COPD, athsma and the like, so PEs are more scarce and a bit of a curve ball....  If you do get an appontment, make a list of questions and take them with you (or better still, send them in advance).

Lastly, I found recovery steady, but on the slow side. Improvements came in fits and starts: little for weeks, then a big improvement. Also, I find I have to stay well away from dust.....a good excuse to get out of the hoovering :o)

Anything more you need - just ask away on here. We may not be medics, but we do have first hand experience.

All he best!

Peter

On Halloween I was just short of breath. Slight pressure on my chest not much at all almost felt like a fake, but it was a nagging feeling in my bones no get up and go. A PA who was in the ER that night just happened to be on the ball and did a cat scan. The blood clot was/ is HUGE. They started me on Xarelto and said if I had to have a PE mine was the very best one to have. Because it was low in the lung and not going anywhere. Problem is it didn't come from my legs. They checked a few weeks earlier because of another problem. So they ran a bunch of blood tests to look for triggers. Unless we know where it came from, Stopping my throwing another is going to be hard to do. If we can't stop it we can't figure where the next one will go. So I too am concerned over every ache and pain. What doesn't help is my husband of 41 years died of a brain aneurysm 2 years ago. So I have seen the results up close. What will my sons and grandchildren do without me? I don't get to see the specialist until Jan 20 to start finding results and treatment plans. Know what I'm doing in the meantime? Praying!!!

Hi Steve,

i had had an unprovoked PE back in march and am still suffering from various issues around anxiety and pain.

my haematologist suggested joining 'Thrombosis UK' a support group for people like us, which I did via Facebook.  

On asking questions around anxiety I was sent a paper abou a condition called “Post-thrombotic panic syndrome" which having now read is exactly what I'm experiencing.

you should think about joining and asking about info on it.

It's certainly helpful to know how common it is and also how to come up with a strategy to live with it while working on your recovery x. Initially I thought it was just me

Hi steve im 22 was 21 when i got pulmanory embolisms i had multiple on both lungs now im really strugglingbto deal with day to day life with anxiety depression incase they come back i have factor v leiden witch my blood is to thick so im constantly looking for an excuse to go and get tests done to see if they are back i have been to hospital 7 times in a month now i am seeing professionals to try and help me deal with it maybe you could do the same to try get you thinking about other stuff