I know you will find this site helpful. I'm new here, too. Just (4) weeks out of the hospital (DVT & 5 PEs). I was afraid of my medicine, too, but now I focus on the fact it is helping me. I have the anxiety, too, but it is already getting better.

Others on the site who have more experience with the recovery process will give you good advice and their words are very comforting. Even on days when you don't feel like posting anything, it is helpful to read about others' experiences. It will help you realize the emotions you are feeling are normal.

Be kind to yourself during this early stage of healing.

Thank you for the support and I'm so sorry we're both here! I'm trying to be kind to myself but my husband keeps pushing me. He's afraid I'm going to turn into a recluse and never leave the house again. I keep telling him I need time to sort it out. He even came with to my regularly scheduled therapist appt yesterday and the therapist assured him that I would push through it - in my own time.

I don't have too much sick time to use at work so I was going to go back on Monday but I'm feeling unsure. How soon did everyone else go back to work?

Forgot to mention, I already have an anxiety disorder and this has just made it worse. I have to work as I'm the main breadwinner, but the thought of traveling the hour and 15 mins downtown is terrifying.

I was released from the hospital on a Wednesday and went back to work full-time on Monday. That was a mistake for me. It was way too early and I didn't have the physical stamina, even though my job is sedentary. That was my experience, but everyone is different. Make sure you get your doctor's opinion about it. I had only been at my job for two months when this happened. But you have to put your health first. There are some days I still don't feel like leaving the house or I'm afraid to be alone when I'm driving or shopping. That's getting better. You will work through it and have ups and downs. Try not to get discouraged. There is the initial elation at getting out of the hospital, but then I quickly had some depression once my new physical limitations became apparent. It's better now. You will have to find your new normal. I'm glad you are getting help with the anxiety since stress is not our friend right now.

Since I was nervous during my initial driving experiences, I found it helpful to listen to something soothing during my commute, either music or someone speaking positive messages. I also thought about what I would do if I got too panicky while driving (where I could pull over, etc.). I know that's not always possible with every commute, but it made me feel better to have a plan, like I had more control.

Thanks. I was going to call my doctor in the morning and see if I can get a message to him asking about the best timeframe for returning to work. My GP, cardiologist, and hematologist all told me in the hospital that I had no restrictions on my activities other than the normal "don't take up contact sports" advice. Basically I just need to listen to my body. Although the main clot was very large and in a main pulmonary artery, my blood O2 levels were never lowered. I didn't really have much shortness of breath either. My right ventricle (I think?) has minimal enlargement, which will be rechecked in a few weeks. So I guess that means I don't really have any residual effects from this ordeal for now? Only physically speaking, of course.

You might want to see if your employer wants a written release for you to return to work. My employer requested one. My leg DVT was massive and unfortunately I had a delayed diagnosis, as my initial venous Doppler was negative, or so I was told. So, I had horrible pain and swelling from the DVT, but no respiratory symptoms at all, so I was shocked to learn I had (5) bilateral PEs. My right-sided pulmonary pressure was only slightly elevated and my O2 level was always normal. My PCP wants another echocardiogram six months out to check it all again.

The physical symptoms I am experiencing now are extreme fatigue, residual pain in swelling in my leg and foot, occasional nausea and rapid heartbeat and panic attacks. My doc said this is my body healing and anxiety.

She says it is too soon to gauge what effects I will be left with, as I had a vena cava filter implanted and had to undergo an emergency uterine artery embolization and blood transfusion during my hospital stay, as well. I am slowly starting not to worry about the long-term effects. I am paying attention to what's going on with my body and taking my medication, trying to reduce stress, etc. In my mind, I have run through every scenario that ends in my demise. I think it's probably natural to do that right after such a traumatic event, but it is not helpful. I have come to realize that I feel better when I think positive, but I am a work-in-progress on that front. :)

Just wanted to say hi and I'm in the same boat as you are right now. I was diagnosed on July 12th, so I'm just in the beginning stages of figuring it all out. I had chest pain today which was completely terrifying but doc ruled it was just muscular and nothing else.

I'm feeling a lot of guilt and anxiety about the stress this has placed on my husband, who was already dealing with way too much, and how my kids (8 y.o. twins) are reacting to and dealing with the information we are sharing with them.

So... you and I will be going through this together to some extent. So glad we both found this community.

Wow, Ippgh it sounds like you went through A LOT! I'm nervous about the thought of after effects that have yet to develop. I'll definitely try to work on the positive attitude but it's certainly tough sometimes.

DaisyWarrior, I too feel that guilt for putting this stress on my husband! I've been very much MIA for the past year as I've been studying for my CPA exam and that's put extreme stress on us both. Now, with my last test scheduled for August 8 we have this to face. I feel awful for doing all this to him. I absolutely help when I can, if not just to spend time with my little guy, but it's still a huge burden on him.

Hi and welcome! The first few weeks after a PE can really be freaky. Trying to sort out what you can and can't do, dealing with the emotional fallout, figuring out work.

First, I'm not sure where you found the statistic that you mention in your article, but I'm pretty sure it isn't that high. People post incorrect information here all the time (much like the rest of the internet), so be careful to see if there is actually a link to the statistic and if the provider of the statistic is at all reliable. It's so easy to believe the worst this early in recovery, but the truth is that most people clot once, come off the anticoagulants in six months or so and go on with their lives ... and nothing else ever happens with regard to clots. There's no way that 33% of us kick the bucket in a few years from more clots ...the number is just too high.

Now, some of us do re-clot, and a lot of us multiple clotters hang around these boards. Keep in mind that just because there are a lot of us here, that doesn't represent the norm. Most of us are the medical weirdos and we're considered exceptions, not the norm. Do not get caught up in the thinking that because a lot of us have clotted more than once, you're definitely going to do it too. The people who only clot once aren't hanging around these boards ... they're off living their lives.

As for a cause, not everyone does wind up with a definite cause. Sometimes it is a "perfect storm" of events ... dehydration, a long car/plane ride, birth control/HRT, falling asleep in tight clothes, ankle/foot injury, all sorts of things. And, even you don't have an exact cause, that doesn't mean you have cancer. I don't have a cause either and I don't have cancer.

Also, do know that not all clotting blood tests can be done while you're taking anticoagulants, so you may still have some you need to do, depending on when your blood was drawn for the texts.

Also, just because you didn't have a lot of SOB (shortness of breath) and your oxygen stats were good, that doesn't mean you won't feel some physical aftereffects. That big clot may take a while to fully dissolve and in the meantime, your heart and lungs are going to be compromised and your body may not be getting on the blood/oxygen that it needs. In addition, even if that clot dissolved five minutes after you were diagnosed, it does leave some damage behind it and that takes time to heal.

It's hard to say what physical effects you'll experience, since every clot is different. For me, I had no pain, but severe SOB. I didn't have the really bad fatigue show up for about 4-5 weeks after diagnosis, when I was just pushing myself too hard to get back to "normal." Things will change in how you feel as you recover, and you might feel great for a while and then lousy for a while more.

As for work, I went back to work four days after getting out of the hospital, but I was on a reduced schedule for a while. You might check with your workplace to see if you're eligible for FMLA, which should allow you to take some time for health reasons without putting you at risk for losing your job. However, you don't get paid for taking FMLA time, so that could be an issue if you're the sole breadwinner.

Also, try to shift your thinking toward the blood thinner. Right now, that medicine is preventing more clots from forming and it is letting your body dissolve the existing clot and start to heal from that damage. The longer you're on that med, the further you get from the perfect storm that caused the clot and the less likely to are to clot again. That medicine is keeping you safe and helping you heal and it is a GOOD thing in your world right now.

I'll also say that, for me, the mental part of recovery was SO much harder than the physical part. I've wrestled with anxiety-based insomnia for 15+ years and had it pretty much under control at the time of my PEs ... however, with the PEs, it came roaring back and I had a terrible time sleeping for eons. I couldn't even try to fall asleep in a room by myself, because I was convinced that I wouldn't wake up. I did therapy, meditation, and also two years of anti-anxiety meds to help me sort it all out. If you're already taking meds, you ought to contact whoever prescribes them for you and talk about getting your dose adjusted for a while and/or adding meds for more immediate panic attacks. Anything you can do to help yourself out with the mental part of things is a good idea and I'm so glad to hear that you're already talking with your therapist.

Hang in there! Read around on the site and ask lots of questions. We've all been where you are and it is a freaky place, to be sure. But, you'll make it through, and things will get better and you'll absolutely be there for your husband and child. I'm more than four and a half years out from my PEs (multiple, bilateral) and I'm pretty much back to normal and have been for a while. It'll be rough for a few months, but it DOES get better.

Yeah, what Toss said!

Thanks so much for your kind words. I can't find the link I was referring to but I try to be cautious with statistics because so many things must be considered. When I'm sitting in the middle of it though, it's so hard not to focus on the worst. My anxiety has often focused on my health in the past but I've never had a solid reason to be anxious. Now I do and it's difficult coming to terms with it.

My husband suggested seeing if we could increase my anxiety meds for a while. It probably isn't a bad idea. I'm facing going back to work tomorrow and we'll see how I do. I am eligible for FMLA but, as you noted, it's unpaid and that's a problem. We do have an emergency fund we could dip into but I'd prefer to avoid that if at all possible (still haven't seen the bills yet for my hospital stay). I'd rather see if I could arrange a work from home situation at least part of the week. Thankfully my employer tends to be rather understanding with these types of situations and I've been there 5 years so I have some level of seniority.

I can't tell you how comforting it is to have you all. Actually. I'm sure you understand! There's so little information about how to emotionally cope with this. I never so much as lost consciousness but I still feel like I had a brush with death and being able to chat with others who truly understand is amazing.

Something to consider with FMLA is that you don't have to just taken 12 weeks off work. It can also be taken here and there to cover things that pop up during recovery.

I had FMLA and I used for a while, but I didn't just stop working, I was working 10-hour shifts at the time of my PEs and I started back at work doing 4-hour shifts. The rest of the day was covered by FMLA. I slowly increased my work time to five hours, six hours, etc. The few times that I felt really lousy (had just pushed it too hard), I could use the FMLA to go see my doctor or go home and sleep.

I guess what I'm saying, is that you might consider signing up for the FMLA as a backup. If you need to work shorter days for a while, it'll help with that. Or, if you can work full days half of the week, but need afternoons off Thursday and Friday, it's got you covered. Or, if you're working full days, but need occasional time off for doctor's visits, you can use the FMLA too.

I mean, FMLA will cover you for 12 weeks off, unpaid. For me, I used probably less than a fourth of it, spread out over 8 months or so. It was just helpful to have notes on file with HR from my doctor and to have the option of being able to take some downtime if I absolutely needed to.

Also, you might be able to get a note from your doctor that encourages the working from home part time, and that might help you out with your employer, as well. For me, at the time of my clots, I was working as a bank teller and was required to stand all day. My doctor wrote a note asking that I be given a stool until I got better. That, plus the FMLA, gave me some flexibility during recovery that helped put my mind at ease.

Also, I did make a point to be available to my employer during difficult situations. When I first started back working four hours a day, I made a point to be in during the lunch hours so I could help cover as people took breaks. If people were out on vacation or sick, I tried to be available a little more to help with coverage. Doing stuff like that will help your employer feel like you're still an asset, even if you're not able to work 40 hours a week.

The FMLA has helped me immensely with peace of mind. I use it to make up the hours I don't work (I started off at 4 hours and am up to 6 now) and to go to the doctor and to stay home if I've overdone myself or my mom is sick. Then I don't have to put my job at risk. I'm also like Toss. I've made myself available for the weeks we didn't have a secretary on 4 hour desk shifts and I schedule myself for the 6 hours so that I work 9-3 and straddle all the lunches (I don't get a lunch on 6 hours, just a 15 minute break). Almost everything is wrapping up when I leave, and I'm there by the time the emergency patients and inpatients start showing up. I make a big effort to try as much as possible to schedule my doctor visits at mid-week when there's more staff and near the beginning or end of the shift so I only show up a bit late or leave a bit early.
I work for one of the biggest healthcare organizations in the country, and I personally was glad to get the job protection the FMLA gave me. I have 11 years in this department, 22 years service total and I feel I could have been a high pay/expensive grandfathered pension and benefits victim of termination otherwise. It's all according to what size company you work for how much you need the FMLA.

Yeah, I would definitely fill out the FMLA paperwork, if you're company size falls under the applicability of FMLA. You may never have to use it but it's good to at least have the ground work completed in case you do need it. I never had to use mine, because I had a lot of vacation left to draw from when I had my PE. Also, my boss is evolved in her management style as far as flexibility, but I think me just keeping her informed of what I was planning on doing, when I was going to be in the office, when I had to leave for appt , how I planned on meeting my deadlines, etc helped my cause as well.

And yes, if you can work something out with a flex schedule, that can be really helpful. I went back working from home about 2 weeks after I diagnosis, and then went back in the office full time a few weeks after that.

You're going to be ok.

I made it through my first day back well enough. I was also able to arrange to push back my starting time so I don't have to get up at 5:30 and I'll be working from home 2 days/week for a while. Hopefully those measures will work. I'm waiting to see my dr now bad will have her fill out the FMLA paperwork just in case. I still have over a week of sick time but I agree it's nice to have that option if I need it.

Btw, I read a similar statistic today that I mentioned before with one VERY important difference. This one said that about 1/3 of PE sufferers that go UNTREATED will die of another PE within years. The untreated part is key. It was highlighting how often these go misdiagnosed or even ignored. I'm guilty of it as I initially thought I had just pulled a muscle.