Pulmonary Embolism Support Group

Gamer,

You have found the right place! If you peruse the discussion list on this site, you will find that everything you are experiencing is quite "normal" for life post-PE. I'm about 5 weeks out, and found this site about 2 weeks into the extreme anxiety, sleepless nights, and panic attacks that are very common for us all it seems. The people here were (and are) a godsend.

The good news is: you're young, you found it, and it's being treated. I'm assuming you're still on anticoagulants? From what I've been told it is extremely rare for anyone to develop a subsequent PE while on anticoagulant therapy, so you can rest easy a bit there. And the pain is totally to be expected - one of my docs said several weeks if not several months of healing - but you will see some folks on this site 6, 9 even 12 months later and still experiencing pain and/or discomfort. I myself can have a few really good days, only to be slapped around a bit by the pain again for the next few days. I just had 4 good days in a row only to wake up this morning with an odd crampy feeling in the exact spot where I felt pain in the beginning (a little worriesome!). That being said ... if anything doesn't feel right - go to the ER. I know - probably nothing feels right at this point - but if you're in extreme pain, or have extreme shortness of breath - just get yourself in to see someone. It's a little bit of a mind game - okay, a HUGE mind game - since anxiety/panic symptoms (racing heart, difficult to breath, sweating, etc.) also mimic those of a PE, but ... you'll recognize the difference and it will get better. Even if you have a few false alarm trips to the ER, who cares? My docs flat-out told me they didn't care how many false alarms I had, they just told me to get myself to the ER if anything made me worry (but this may be because I walked around in agony for 4 days - almost no sleep - before I was diagnosed, just trying to "tough it out").

As someone who has always been fit, active and healthy (I rarely even come down with a cold!), this has definitely thrown me. I went back to work (I have a desk job) about a week after being released from the hospital (where I spent 3 days), and while I might have been physically able, I now wish that I would have taken another week off. I wasn't mentally ready at all.

I asked upon my discharge, what my physical limitations were, and they literlly told me "none." Just take it easy, and if it hurts to much, then stop. My docs advised me to get back into the swing as much as I was able as respects exercise and work, and I'm getting there. I used to push myself with exercise before, but now if I hurt, I take the day off!

It sounds like a good idea to switch docs. I've been really, really lucky in that regard, too - every single doc I've had has been really supportive and taken me seriously. The one area they are lacking is letting you know what to expect once you're released. The mental side of it is hard. I guess they don't want to freak you out with the power of suggestion, but I wish they would have mentioned finding a support group like this one - I was a prisoner in my own mind for two weeks until I found this site. It sounds like once you get set up with a new doc you will have plenty of questions to ask and hopefully your new doc will be a lot more responsive - I think once you get some answers that will really help with the anxiety. The rest just takes a little time - you'll get there!

(As you can see, I write novels, too - everyone on here is probably so sick of me by now! ha ha!)

Good luck!

Gamer,
I'm right beside you! I'm a 46 year old single woman that has worked two jobs for years out of necessity. It's beyond frightening wondering how this is going to change all we know.

I am two weeks out from my diagnosis ~ one week in the hospital, four days at home and then three days back to work part time (4 hours) but I do have a non-taxing desk job. I don't know if it's a result of not being healed or the effects of the Coumadin, but I am EXHAUSTED all the time! I was hoping to get back to work full time this week but I'm not certain if I'm going to be able to do that. My employers have thus far been understanding but I don't know how much longer their understanding is going to last (just one more stress added to the anxiety!)

I'm thrilled to have found this site today because even though my doctor (a general practitioner) seems to be very understanding and informed, it always seems like I'm not asking the right questions or at least not asking him the questions I need to know when I have him there in front of me.

I've experienced much the same anxiety that you have only I have the added anxiety of unceremoniously been forced to stop smoking the day I entered the hospital too. I'm certain that the withdrawals of not smoking have added to the anxiety of the P.E. and I'm hesitant to question every single little thing I feel because I don't want to be a hypochondriac either.

I think that Khurney1 offered some wonderful advice and isn't it comforting to know that others have experienced (are experiencing) much the same thing. I too was assured by a neighbor (that is a nurse and was on Coumadin for awhile herself) that the chance of recurrance while on anticoagulant therapy is rare. That alone has given me some peace of mind in being able to sleep at night. The fact that she is now off the Coumadin and had to be on it less than a year is encouraging to me too.

As for the pain, I have been told to expect at least a month, but I'm hoping that others on the site that have gone longer aren't the norm! (bless their hearts for all they've been through though) The oddest thing I find about my pain is not only does it come and go, but it shows up in different places. I was told that I had several clots in both lungs. It appears that the ones in my left were not as big or serious and it seems they have dissapated as the pain has been gone for over a week. The ones on my right were the ones they were more concerned with and those are the ones that continue to cause pain.

I don't have any advice to offer you other than to let you know that someone else is out here going through the same anxiety and fears as you are. It seems there is much good information on this site because as much as the doctors are learned, finding someone else that has actually gone THROUGH this or is going through it is SO much more comforting.

Good luck switching to the new doctor and with your progress. Please keep us up to date how it's going :)

(oh yeah, a novel writer here myself! haha)

That is one main factor I failed to mention, I was a smoker for 15 years, but the day this happened I have not touched a cigarette since. I am very thankful for that, but also it has added to the stress factor. But everyday I am finding it easier not to have the smoke that I was addicted to.

Thank you for all of the advice and story. It is very comforting to see that I am not alone in what I feel here.

As for my employer, they want me back at 100%, but that is just talk too. I am on short-term disability at this time so at least I am protected in that department. Thanks again.

Hi and welcome. I am 5 months post-PE. I know the anxiety you are feeling. My PE caused me to develop Post-Pardum Depression. My newborn son was 19 days old when I was diagnosed.

Everything you are feeling is normal. I too was a smoker for 15 years(yes I am only 24, I started when I was 9), who quit the day I was diagnosed. The first week was easy for me. Of course, I was also so drugged up on pain killers that I didn't know up from down. As time went on it got harder and harder, then it started to get easier and easier. It will eventually get better. Now, every time I get a craving I just think of the giant blood clot in my lung. I think about how smoking increases my chances of clotting again. Smoking a cig now could actually put me in the hospital. I promise it will get easier. Yes, it does help increase your anxiety. But eventually you start to feel better.

Hang in there. Oh and to whoever mentioned tiredness. No doctor is going to admit that its a side effect of the Warfarin, but it is. Just ask anyone here. It sucks!!!

My advice would be to not go back to work too soon, even if you have a desk job. I went back a week after being in the hospital for 7 days with a DVT and massive bilateral clots. Felt sort of ok when I got home, so I thought, why not go to work. I have a desk job but it's pretty stressful. Going back kicked my butt! I was just exhausted. So, listen to your body and be good to yourself!

I totally agree with the exhaustion comments. I was dragging for sure those first few weeks. And I was so tired - not remembering the words for things, forgetting how to spell certain words - to the point that I wondered if I hadn't also had a stroke! But, it got better. Now I feel (almost) normal. I should have also pointed out that I think I was really quite lucky to be feeling "ok" physically within about a week or two. From what I've been reading here, lots have had a much more difficult time. I agree with those here who said to take it easy with work. Some days I can't believe I'm sitting at my desk like nothing happened. I think I do myself a disservice to appear so capable when inside I'm still a mess at times.

Good luck, you guys! Thanks so much for being a part of this discussion - you all help me so much every day!

Unfortunately my job requires shift work which how they do it is going to blow your mind:
Work 4 nights, off 2, work 3 days, off 1, work 3 nights, off 2, work 4 days, off 7. All 12 hour shifts too. I have been at this company now for 18 years; however, there is not room for myself to be moved to a desk job or anything with stable hours.

Right now my wife and I are discussing the possibility of quitting this job and starting over.

Khurney1, I too had major brain fog for a several months. Couldn't spell, couldn't remember the names of certain things, couldn't form words in my mouth, it seemed. It started impacting my work. I think there's an old thread out here on this, as a lot of people experienced this same thing. I thought it was a side effect from the warfarin, but in hindsight, I think it was fatigue and stress.

Dear gamer,
I'm so glad to see that you are getting lots of support from this board.... what an amazing group of people and it gives me hope to see PE stories from people of all ages..... Everyone has been so amazing with their hugs and sharing their personal experience.

I want to encourage you that I have had my days filled with anxiety about the aches, pain in left lung and fatigue. I try to focus on the fact that I have really made it through the worst part- I survived a pulmonary embolism when so many people die from this each year (especially the ones that don't seek treatment and get blood thinners).

I also have had emotional and financial stress because I am self employed as a personal fitness trainer. No desk job for me.... so I don't know what I'm going to do. It's been a month for me and there is NO WAY I am ready to start training people.... I might take a temp job to help pay the bills... I think by law (at least when I worked in a salaried position) that a company has to accomodate your illness and should make an effort to provide some type of desk job or you might want to check out your companies short term disability program. I pray that each day will get better for you my friend.....

Well, had my visit with what I would call a "REAL" doctor. I spent more time yesterday meeting and discussing with him everything about me than the entire 9 days in the hospital with my original Pulmonary doctor.

Lucky me, my wife had all of my hospital records and a copy of the CT scan. After he reviewed it, he truly believes that I had Pulmonary Infarction. Now, he did expain this to me in great detail. It truly explains why I am having so much pain in my right side (lung). He said the clot was larger and did more damage than what was originally told to me. I broke down mentally cause the guy actually walked over, put his arm around me and told me that I was a very lucky person.

His name is Dr. David Walker and for once I came across a doctor that treated me like a human being instead of a paycheck. He has ordered another CT scan to be done as he could not believe I was released from the hospital without having another one done. This will be done Thursday morning and I am to meet with him on Monday morning to discuss the results.

As for my employment.....lol, he said "Well, you are on pain medication that prevents you from driving. So, you can't drive you can't work." Looks like I am going to be off for awhile, thank god for short term disability leave.

And thanks to all of you for your support. All of your words have truly been helpful to me and my family.