Pulmonary Embolism Support Group

Yes it's normal..... I read somewhere that anxiety is very common after PE's at the time I was really struggling with the emotional side of things and thought life would never get back to 'normal'. Give yourself time and you'll heal on all fronts - that said don't ignore anything that is causing you pain or is not normal. You take time and be kind to yourself and sorry the Drs can underplay the whole DVT/PE situation it has been traumatic for your body so time to slow down and look after yourself - take care

Agree wtih Mutti1. The anxiety is completely normal, and it's scary and confusing because anxiety can cause chest discomfort, so it's like you don't know what's anxiety and what's from the PE.

It takes a while to recover. And you are right. The docs don't tell you anything about what to expect when you start the recovery process. I think lots of us out here experienced chest pain for months during recovery. But check with your doc if you're not sure.

There's lots of great topics on this site that might help you. This group really is great in terms of support and information.

Ditto the first 2 replies. It always gets worse at night. I don't understand why we are not told what to expect after we go home from the hospital. This site is a Godsend. I am actually thinking about writing something to possibly be used for that purpose. I think it is desperately needed.

I know exactly how you feel. I was hospitalized just a week ago with a pulmonary embolism. I had a CT scan, which was ordered by the pulmonologist that I was sent to just to rule out a blood clot (was thought that I possibly had asthma). I really wasn't expecting this kind of diagnosis (I had just played tennis and ran the day before diagnosis). I was directed straight to the emergency room and spent the night in the hospital. I have been researching the internet like crazy ever since. I just took my last shot of lovenox this morning and was moved from 5mg to 7.5 mg since my levels weren't rising as fast as they had hoped. My breathing suddenly got much better yesterday and was also great today. I still feel pains in the legs and chest intermittently (mostly at night). I am relaxed part of the time, but sometimes get really scared at night. Each day can be better, but I really stress about recurrence and warfarin (I hear the good and bad). I am only 38 and have a husband and 3 children (10, 7, and 5). I have always been fit, but do have family history (my parents are both on coumadin--mom from a PE and dad due to heart attacks/arrythmia). My grandmother on my mother's side and her brother have also had clots. Can you give advice about the best ways to deal with this---great diet tips (other than avoiding salads)? Great exercises or other things you have used? My INR was 1.9 (but was measured on Friday morning--today is Saturday--my doctor left a message today and told me to discontinue my lovenox shots as he was sure that I was above 2 by now). I was so excited to stop the shots, but now am nervous--am I well enough protected? The warfarin must have finally really kicked in. It is so hard to relax---I get anxious & then of course that produces similar symptoms that only make me more anxious. I am getting another test for INR on Wednesday and will have results on Thursday---wish I could actually see what is goning on inside of my body. The doctor at the hospital and my regular doctor have both been so reassuring---they are convinced that I will be fine, but it is hard for me. I love the research on the internet, but sometimes I read too much and it scares the hell out of me---I seem to sleep well only every couple of nights (am keeping my husband up too). I hope that I will get better--I think that time will help. It's funny--I'm a bit scared to ever go off of this drug---my parents have no side effects with coumadin other than bruising more easily and longer time to stop the bleeding after getting cut---hope that I have inherited that & don't get any other side effects.

Thanks for listening to my blog---really helps to find a site with people that know exactly what I am going through.

To Hopper69 especially: Tonight will mark 3 weeks since I had the PE and I still have anxiety. There are nights when it isn't bad but it's always there & I struggle not to let it overwhelm me. My doctor seems to regard anxiety as akin to "Just can't sleep" and suggested I take a sleep aid instead of a Rx for anxiety. He also is concerned that the Rx is very habit forming. I am too, but wonder if we're both too concerned with that when the anxiety is so severe at times. I've never used any drugs or had any addiction issues so feel maybe I'd be better off to treat the anxiety for a while, but for now am not using the Rx that he finally did write for me. I guess anxiety is not very well understood by anyone who hasn't had the experience. It's miserable. I do have a lot of hope that it will lesson and eventually go away, since there is improvement. I just wish the doctors really understood how it feels and that it interferes with our healing. It is difficult to distinguish symptoms of anxiety from possible PE symptoms, so what are we to do but try to figure it out for ourselves. Your family history is troubling, and even though I don't have medical records for all of my immediate family, there is enough evidence to suggest that others in my family have had PE's or conditions that may lead to PE's. I wish the doc's could just assure me that I am safe for now... as long as my blood thinner is testing at theraputic levels. Mine isn't there yet, after 3 weeks. It was when I left hospital but hasn't been since. I'm going to be tested again tomorrow & hoping for the best. Good luck to you, too. I can only offer you my experience that the anxiety seems to get better over time. It seems there should be more that would help but I don't know what.

Thank you EastTN. I felt wonderful (breathing-wise) the past couple of days, but woke up this morning feeling kind of bad. It is hard because it is a bad time for allergies right now (something that I have always struggled with). My kids' noses are running and my husband is also complaining about his allergies. My head is congested and I am coughing some (so hard to tell what is from allergies and what is from the PE). I still use asthma inhalers and a type of claritin medicine as well as nasonex (I am a walking medicine chest :) I was told by the nurses in the hospital that it was still okay to use all of these things (& by a friend that is a pharmacist). Does anyone have experience with allergies/asthma while taking warfarin (have to control both I guess). I seem to be struggling more with leg pain (more than before I think). I just try to walk around a lot & want to get an exercise bike that I can hop onto for at least a bit every hour or two. I am really trying to do everything right & am hoping the anxiety will slowly start to disappear. I had a glass of wine today (it was so relaxing). I've researched that as well and seemed to find that a little is okay---does anyone have experience with that (I have no intentions of downing a six pack :) just a little wine to relax and enjoy the taste sometimes). My doctor mentioned a sleep aid if I needed one too. I don't know yet---it's tempting some nights. I will see how the next week goes before calling him about it. I am seeing my pulmonologist on Tuesday---so will get even more specific information regarding my lung/PE. I am thinking that I may go back to playing tennis in a couple of weeks (I want to be a good patient & will always listen to my body, but I have to live a life too). I am so thankful to have found this site & really love the support and information that is here from people that have gone through this.

Thank you. Take good care of yourselves,

Hopper69

Hopper69,
Everything you are describing is perfectly normal. Some days will be better than others. Your body needs time to heal-so don't overdo it. Make sure , as far as diet goes, that you are consistant -if you are used to eating salad-ea salad-just do it consistantly. make sure to ask or tell your dr. about the wine. It makes your INR go up- I would imagine if you weren't doing too much, and were consistant in your intake, it wouldn't be a problem. Everything as far as anxiety seems to get worse at night. I was afraid to go to sleep for awhile-afraid I wouldn't wake up. counseling and antidepressants may help if it ges really bad. Write again if you need more support -this is the best place I have found with the most accurate information about how life really is after a PE.

This is a great site. I got out of the hospital on Wednesday after 5 days. The warfarin was 1.9 when I was released and two days later was at 1.3. My husband has been giving me levanox shots all weekend and I am keeping my fingers crossed that I am over 2 by tomorrow morning.

It is nice to see that there are a lot of other people out there with similar issues. Makes it all a little less scary.

I'm now at about 4 weeks since the PE and finally the anxiety has decreased tremendously. I never did take the Rx for anti-anxiety meds but would support anyone else in making his/her own decision about that. I'm feeling better, still have some chest pain & was actually at the ER two nights ago for that - because when I called my MD to ask if what I felt was normal, he told me to go to the ER. I'm very glad I did, if only because I was fortunate to have a repeat CT and learn that I have absolutely no clots remaining! Now, that's an anxiety-reliever! Of course I'll remain on blood thinner for some period of time and I'm ok with that as long as things go this well for me. I wish as good a recovery to each of you. Keep me in your prayers, if you are a believer, and in your good thoughts otherwise. Even though I don't know any of you I have you in my prayers daily. Take care best you can and trust your own instincts as to what is best for you. Sometimes, it seems like our own best judgment is about all we have - but this forum is a valuable place to learn from and support one another, and I'll be here for a while. Thanks to each of you for your continued support.

Wonderful news EastTN! I am now 4 1/2 weeks past my hospitalization for PE. I also went to the ER last Monday. I was having leg pain in one leg and just so many unexplained pains that I finally relented and went to the ER. They did an ultrasound of my leg (no clots) and did another CT. The radiologist that looked at the CT said there were no new clots and the clot that I had was dissolving. Great news! My INR was low at the ER (only 1.56). So they had me take an extra half tablet of my warfarin and sent me home. I saw my pulmonologist the next day and he increased my dosage a bit (he had just decreased it the week prior b/c I was at 3.7) Guess he decreased it by a bit too much---we will see where I am at this Tuesday.

I am feeling much better--still getting massages from my husband (lots of tightness in back and neck), but feeling much more relaxed--getting more sleep the past few nights. I am starting to figure out that some days I will feel a bit of pain and others I will not. I really do seem to notice pain more when my INR is on the low side. Hopefully we can get my perfect dosage figured out in the next couple of weeks.

Wishing everybody the best of luck, health, and happiness.

Hopper69