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.

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lakotajo2 02/27/2010

Hello there. I found this group in my search of the internet for some answers to what happened to me and what is going to happen.
I am 48, and I have no risk factors for PE which is why I suppose it went undiagnosed for a couple of weeks. I kept going to the dr telling them I couldn't exert at all without becoming SOB. Finally, I was very near collapse on Feb 11 when my family dr told me she was 90% sure it was PE and sent me to the ER with a phone call that I was on my way. Massive bilateral PE both large and small I was told.
Over and over I have been told I was lucky to be alive from this. I spent 6 days in the hospital, I haven't ever been admitted to a hospital for being sick before and my two ER trips were my first in over 20 years.
I continue to be a mystery as far as WHY the PE, although I have more tests the dr wants to do when I am feeling better.
I guess my biggest question at this point is my recovery. I have noticed that many of you said that it was like 6 months or more before you felt like yourself again.
I want to know how long before I am able to resume some sort of normal activity. I am still on Oxygen and I am having a hard time gauging if I really "need" it or not. I spent the other day off O2, but I had a pounding headache all day that didn't go away until about 4, when I thought maybe the two things were connected. Five minutes later, the headache disappeared.
I want to get better, I know I need to be active to the point of strengthening my body, without debilitating myself. How do I find the balance>
I am so glad you are all here, I am learning a lot and I am grateful for all your stories and advice.
Jo

deleted_user 02/27/2010

Welcome to our little PE club :)

In terms of striking a balance between resting and strengthening yourself, I think you need to start with LOTS of resting. PEs are incredibly traumatic to your body, and you need to give yourself a chance to heal. Do the activities you feel comfortable with, but listen to your body and let yourself rest when you need it! It's frustrating, but taking baby steps back toward your normal routine seems to be the best way to go. Keep in mind that we're all different and there's no "normal" recovery period!

I'm almost 2 months out from my PE diagnosis and I'm almost back to my normal activity level already (I've been slowed down by some complications along the way, like severe anemia and internal bleeding). But in the beginning I was exhausted and basically didn't get out of bed for 6 weeks.

deleted_user 02/27/2010

I had my PE in October 09, massive multiple ones in my left lung with serious lung infarction or tissue death. I was lucky to survive as well. I have no genetic risk factors, none of the high risk factors such as smoking or obesity, injury or surgery. They attributed my PEs to a switch in BC pills I had taken for a decade. For the first several months I was very fatigued and tired, and had many side effects from the warfarin that made things worse, hair falling out, extreme vomiting, weight loss, memory loss ect. I honestly felt like hell all the time. I couldn't function at all. I stopped warfarin in December and now that i'm several months off it, I feel tremendous. My strength has returned, I am able to walk farther, do events like snow shoeing, and normal daily life activities. I do sometimes get out of breath still if i push it too hard or too far. I've learned to pace myself, not feel bad if i have to rest while doing something as simple as grocery shopping or walking up stairs (that seems to be my nemesis). I think every PE survivor is different. We all heal from the emotional and physical trauma at different rates. For some people 6 months is normal, for some it takes a year or longer. Listen to your body, set small milestones and tasks to accomplish. Definitely this group is a life saver in terms of connecting with other survivors. You're not alone.

best wishes in your recovery.

More2be 02/27/2010

My empathies for your having to join us, but welcome aboard. With it still being within a month of diagnosis, the recovery is in the early stages. Your medical advisors will best guide you for continuance or cessation of O2, as well as how the anticoagulation treatments best fit the particulars of your case. For something that is so life-threatening, the chances of a robust recovery are in your favor once you make it to treatment.
The WHY part may come in time. Often the first visit with the hematologist is most helpful for that. Meanwhile, be patient.

TossNTurn 02/27/2010

Welcome to the PE group! These guys have been SO helpful to me in my recovery. (I'm 5 weeks out now.) I'm really sorry that you have to join us, but I'm glad you're here. The moral support is invaluable.

I'm different I think than a lot of PE survivors in that I wasn't very sick when I was diagnosed and things have been up and down since then. Be prepared for anything for a while. Pain will come and go; SOB will come and go; panic/anxiety will come and go; exhaustion will come and go.

I've had to be very careful in pacing myself. I thought I was doing really well keeping things slow and then got walloped with exhaustion about a week or so ago. I've had to be very careful since then. If I feel like I can "probably" do something, I dial the activity down a couple of notches and then do it. My mantra for the last week has been "When in doubt, stay in bed."

Good luck! Take it easy and keep us posted.

lakotajo2 02/27/2010

Thank you for the kind replies. They really do help and let me know I am not being a big baby, but taking care of myself. I haven't ever been this sick before, so it has me kind of at a loss. Others who have been there, done that, are so helpful at this point. Thanks!
Jo

shachar 02/28/2010

Welcome aboard! I agree with what the others are saying--this is a real blow to the body, especially if it's "massive". Give yourself time and be patient--easier said than done, but it's the only way to go. Rest is key, and building up activities at your comfort level will take time. My experience was that when I pushed myself too hard, I "paid" for the next few days with exhaustion and weakness. Now, seven and a half months later, I am feeling almost like my old self. But even now, I'm cautious. I make an effort not to overdo (hard for me, since I was crazily active before the PE). A lot of it has to do with allowing yourself to heal and not trying to be superwoman. Wishing you better health!

deleted_user 03/01/2010

First off " WELCOME"!!!
Second, take a tiny breath and kick somebody.... oops I meant kick your feet up. LOL.... My story has some similarities but the most noteworthy, like you, are the why and the when. When I first began looking in on this forum I was seeking quick numbers. In my pursuit I learned soo much that the thought of an exact time is humorous. I'm approaching 4 months and by golly, I wish 6 months is the time for me. My reality check..... A Pulmonary Embolism lives next door to a heart attack and cross the street from a stroke. We have to recover with very similar patience and precaution. {here's a gumdrop for you......I have heard numberous people jump back into their lives in a month} I wish you speedy healing .

deleted_user 03/02/2010

Welcome aboard! I suffered massive double pulmonary embolisms in September! I can relate all too well with what you are feeling right now and this site helped me so much along the way. If you feel like you need the oxygen, it surely isn't going to hurt at all! I was scared and felt the oxygen helped me along the way - even though my oxygen level was at 97% without the oxygen. As far as the headaches go, I had so many headaches at the beginning and honestly there hasn't been a day go by where I haven't had a headache yet. My doctor figures it is from the warfarin. I wish you luck with everything and if you ever need to talk or ask questions everyone is here for you!

Take care!

deleted_user 03/05/2010

I'm new also. I am so happy to have discovered this discussion group. I now know that the pain and heaviness in my chest is normal. I had several clots in both lungs, but a very large one that caused an infarction in my right lung. I was in the hospital for six days and have been home for a little more than two weeks. I'm supposed to go back to work on Wednesday which would be three weeks since I left the hospital. Am I going back too soon or is that a reasonable time frame? I still get tired and have the discomfort in my chest. Any advice would be appreciated.

lakotajo2 03/05/2010

Kbloemkr, I got out of the hospital on the 17th and there is no way I would be able to go to work right now. I am not even up to my regular routine around the house. My dr told me I am recovering really well and quite fast considering the severity of my PE. I would think you might be pushing too hard, is there any way you can either put it off for a longer while or just go part time? No use pushing yourself into an illness, and I say listen to your body. Mine says, I am tired!

deleted_user 03/05/2010

Jo, I thought I just posted a reply but I don't see it. I must have done something wrong. Anyway, I think we were in the hospital about the same time. Great Valentine's Day, huh? Although our cases sound similar, I did not need oxygen after coming home, and I did have the "perfect storm" to produce these clots. In addition, I may have Factor V. I should find out next Thurs. whether I have to be on Coumadin for the rest of my life. As far as work is concerned, I am an elementary school librarian so I am on my feet a lot. However, I have a flexible teaching schedule that I have some control over so the two days I'm working next week (Wed. and Fri.), I only have a couple of classes. I figured I would see how I felt after those two days to determine if/when/what schedule I would return to the following week. My principal and her boss are giving me lots of leeway in my return date, even telling me to stay out longer. I guess I just feel guilty about not returning when the doctors seem to think it's okay. I'm not used to sitting around but when I do too much here at home, I really feel it. Even if I don't do much, I still have the heaviness in my chest and some discomfort--must be from the healing. I also tire easily. How long do you think it will be before you resume normal activities? The pulmonologist says I can start walking, but again, I really get tired.

Karen

lakotajo2 03/05/2010

Karen, my goal is to stretch myself everyday without overdoing it. I want to get stronger and heal and not debilitate myself. Problem is, it doesn't take much to wear myself out! My doctor told me today that I need to listen to my body and do exactly that.
For now, I still a nap everyday and my activity is pretty darn small. But, at the same time, I am feeling much better than I was and I can tell, even though I might get really tired, I am overall doing so much better than I was.
My gift to my husband on Valentine's Day was staying alive!
Take care of yourself, and there isn't any guilt in doing what is best for your body.

TossNTurn 03/06/2010

kbloemker--I would be very cautious about your activity level when you go back to work. I started work again on a Friday after getting out of the hospital on Tuesday. I was working short days (starting at four hours) and gradually working my way up. I was great for about four weeks and then one day I was working 8.5 hours (a normal day is 10 hours) and got hit with total, extreme exhaustion. Barely made it home and spent the next day on the couch. Two weeks later, I'm still not where I was before. I made myself worse while thinking I was taking it easy and slow ...

Moral of the story is that even if you are doing well, take it very very easy on yourself. I, too, was worried about leaving my job short-handed and I also spend most of the day on my feet (I work in a bank). But, you're doing no one any good if you wind up exhausted and set yourself back a couple weeks in recovery. Better to take it really, really slow. If in doubt, take another week off and work only partial days. If you think you "might" be overdoing it, dial the activity down a couple of notches. Just be careful and take really good care of yourself.

Keep us posted!

deleted_user 03/06/2010

Thanks so much, everyone, for the advice. I will have to rethink my plans. The part about having a relapse, TossnTurn, is really making me reconsider. Sounds like none of us are used to sitting around! I hope I'll be able to take care of my gardens this spring--that is my therapy!

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