Totally happened to me- my husband was a gem when I was in the hospital. And then when I got home, he didn't understand why I was still so tired and wheezing and limping and what not. And he certainly didn't understand the anxiety.

He heard the doc tell me that I can go home and resume your normal activities. Well my husband took that completely literally. So when I got home after 7 days in the hospital (4 in the ICU and 3 in the cardiac unit), during which I had a clotbusters in the ER so I didn't die, a blood transfusion, an vena cava filter inserted, 2 CTs scans, a doppler , an echocardiogram and whatever else occurred during those 7 days, my husband helped me into the shower and then I crawled into bed and I swear to god, he got in with me and wanted to fool around. I said, I are f-ing kidding me? And he's like, what? Not a clue. It took him a while to realize resuming your normal activities does not mean you are even physically or mentally capable of doing it, particularly an hour after being discharged from the hospital.

And I do believe my husband cares about me and was worried out of his mind about me. He was just incapable of considering what I might be going through.

Tell him to knock it off. They're such self absorbed a-holes sometimes.

It is common and normal to fear for your life at this point. Difficulty sleeping may happen for the most practical health reasons, such as intense pain, or due to the concern of drifting off with no wake-up. We tend to be unaware that as dangerous as PE is, it is quickly responsive to treatment. The most life-threatening danger falls upon those who do not make it to the hospital, or do not get timely diagnosis. For those who do make it past hospital admission and correct diagnosis, Merck puts the survival odds at 95%, with the first hour or two being the critical time.

http://www.merckmanuals.com/home/lung_and_airway_disorders/pulmonary_embolism_pe/pulmonary_embolism.html

The fear factor almost universally lasts much longer than the danger itself. Making the situation worse is that the recovery often brings odd things with it, including intermittent symptoms as normal lung circulation becomes restored. Many of us have been through the rite of a worry-driven second trip to the ER.

As our own survival becomes ever more secured, our cause, hopes, and our prayers well belong with those who come after us, that they benefit from our efforts to raise awareness of this oft-undiagnosed malady by which thousands of lives are lost, that there be more lucky ones who get this treated or even prevented.

We could run an entire forum here just on the subject of how this affects others in our lives, both near and far from the heart (in the figurative sense). Some find a comfortable level of support from those around them, some do not. Even some of those who are well-connected in this world feel alone with this, just as if they had no one. It often extends to work situations and casual social situations as well. In recovery we tend to be the most healthy-looking sick people, whatever may be going on inside.

Yeah, the first night I was home from the hospital I slept like I'd never slept in my life. I don't even remember my head hitting the pillow. The next night I woke up at about 2am and could swear I could feel the clots moving around in my chest. That was my last good night of sleep for another 3-4 months.

The anxiety is just intense. I don't know if knowing it is coming helps, but it is still really hard to deal with. I made two return trips to the ER and they both turned out to be anxiety just causing symptoms.

A lot of us feel pretty isolated with this, although I have found some comfort talking to others who have been through life-threatening issues. My best friend survived breast cancer diagnosed when she was 30 and she has some of the same fears about it "coming to get her" like do about clots.

I also used to work at a bank and would have conversations sometimes with customers who were fighting something health wise. This whole experience gave me compassion and understanding I didn't have before. It is such a relief sometimes to find someone else to talk to who feels afraid of their own body ... and frustrated ... and exhausted ...

Best wishes tackling this whole thing. I would be totally honest with your doc about the depression and anxiety. If he/she blows you off or doesn't answer your questions (and write the questions down before you go in), find another doc.

Keep us posted!

More2be I couldn't agree with you more! Most people see me and they see a seemingly healthy person, but they have no idea what's going on in the inside. This PE business has definitely put things into perspective for me. I am so grateful for this forum.

Lifeat27- Welcome! Im about 3 months out and while symptoms like chest pain and SOB have decreased signifantly they still rear their ugly heads from time to time. Although the chest pain usually comes after I've done too much (ie playing xbox kinect with my younger brother for a couple of hours) and the SOB I swear is usually brought on by anxiety but never lasts more than 5-7 minutes. And honestly when I stop thinking about how short of breath I am, it usually subsides.

I can tell you that things will slowly get better at least they have for me so far at 3 months, but I'm giving my body time to heal. Heck it been through a lot and deserves a break!

This forum has gotten me through some tough times so far and I'm so grateful. Definitely search through the discussions and posts they have been extremely helpful for me so far. And keep posting! :-)

You guys all make this so much easier. I have made a complete list of about 25 questions for my primary care doctor visit tomorrow, since she is supposed to be the one monitoring me while I am on Coumadin. The questions range from "can I give you my sharps container to empty?" to "how to we manage my hypertension to prevent the increased risk of cerebral hemorrhaging while on Coumadin". Hopefully I won't overwhelm her with questions, but damn it, I need some answers!!!!

Doing more research of ways to change my lifestyle to hopefully prevent blood clots in the future (fingers crossed that I can some day get off Coumadin), right now they are telling me I am a lifer because of the numerous clots). My way of trying to think of it positively is to think of my time on Coumadin as my preparation time to get used to this new lifestyle I need to live of being more active, quitting smoking and not over indulging in Vitamin K rich foods (because I ate ridiculous amounts of spinach and broccoli before I was diagnosed). Any other suggestions to improve my chances of not getting another PE in the future without being on Coumadin would be appreciated! I know it is a ways down the road (if even possible) but it is lifted my spirits to plan for it. :)

rmb - Thank you so much for sharing that with me. I was beginning to think my husband had changed from someone I knew to an insensitive a$$hole overnight. I had especially thought he would understand because of his experience, but it made sense when he said that his experience was so long ago and he has had to "suck it up" for so many years that he has completely forgotten how horrible it was emotionally at first. Tonight he actually offered to go with me to my appointments tomorrow, whereas before he had just told me he didn't want to go when I asked him if he would go with me. Progress!!!

My boss has actually been the one supporting me most, she rushed to the Urgent Care and spent 5 1/2 hours there with me after my diagnoses and getting all the meds and information. She just hugged me and told me we were family and there was no reason I should have to go through this alone. Made me feel all warm and fuzzy inside. :)

Heather7957 - Yeah, I sometimes wonder if I am creating my own SOB because I start thinking about it in fear and then it seems worse. It is such a weird feeling not being sure if it is in my head or happening sometimes.

TossNTurn - Were you taken off Coumadin after each of your experiences? Are you now a lifer? Two years later.....how would you rate your anxiety and what do you do the prevent future clots? So interested in your experience and truly appreciate you sharing!

Lifeat27--

First, understand that Vit K does not cause clots on its own. It is a very healthy Vitamin and most critical. Eating a lot of it does not cause clots, otherwise we'd have vegetarians dropping like flies. The problem with Vit K is that it causes the warfarin not to work. If the warfarin doesn't work, you get clots (if you're susceptible). The Vit K doesn't cause them on its own. You're fine eating spinach every day for the rest of your life, if you want!

I came off warfarin after both of my DVTs because we though they were caused by birth control (both regular BC and then progesterone-only). The PE's showed up only four months after I came off warfarin the second time. They told me in the ER I was a lifer and I was totally fine with that. I wouldn't wish PEs on anyone.

My anxiety at this point is mostly under control, although I'm still on Lexapro. It rears its ugly head sometimes. I had surgery in early November and was hyper-alert and jumpy for most of the month, worrying that I might have thrown a new clot or two while off my meds. So, the anxiety does come back sometimes. I'm better at recognizing it now though and not worrying so much about my health, as just thinking that I just have to get through the anxiety and I'll feel better tomorrow.

It really does get better, but it can be a long process.

I did not realize what SOB was either so thank you! lol :) I am 18 and have several PEs. I was admitted to the hospital 9 weeks ago and stayed there for 5 days. My chest still hurts a lot some days, but definitely not as often as it used to. I never know for sure when to worry and go to the doctor. Definitely do not worry too much. Worrying only makes the chest pain worse.
My doctor diagnosed me with anxiety in March I believe. He didn't do any tests or anything. And as I was having a panic attack I had no reason to wonder if something more was wrong. The chest pain continued to get worse and worse though and one day as I was sitting down doing nothing I took my pulse and it was at 178 per minute. It was definitely scary enough to make me go to the doctor.
The most important thing is that the doctors know what is going on now and I am getting better, as I'm sure you will. :) I'm very glad to read posts from other people that are going through the same thing. It most certaintly makes me feel better. Best wishes and prayers :)

Just got home from a doctor visit and coumadin clinic visit. Stupid INR is still only 1.4 and I am at 10mg right now. Ugh. So, as you all know, this means another weeks of Lovenox shots. The doctor also put me on a beta blocker for my high BP and gave me some Norco for the chest pains.

So I go to pick up my prescriptions, because I only have one Lovenox shot left for tonight at midnight and nothing for tomorrow....and my stupid Blue Shield PPO plan won't cover them because they say I have reached my maximum quantity (I have been on them for two weeks). The insurance company says that the doctor must call them and then they might possibly cover them. Well this all happened at 4:30pm....so they were closed by the time my doctor could call them. Frustrating! If a week of the shots didn't cost damn near $700 I would have just bought them and fought the insurance afterwards, but I am gonna keep my fingers crossed that my doctor can get this resolved early tomorrow morning.

Tomorrow I go back in for a echocardiogram to make sure my heart is doing alright from all the high blood pressure issues I have had, long before my PE. Definitely nervous to be on yet ANOTHER medication for my BP, so if anyone else here is on a beta blocker in addition to Coumadin I would love to hear your story.

Hugs to all of you!

I take beta blockers for a tremor and my thrombosis clinic doc said there's no issue taking it with coumadin. Hope that helps.

melmobarrie - Are you also on a hydrocodone pain pill? I just took all three (Coumadin, Hydrocodone and the beta blocker) and that just seemed spooky to me!

Also - did your heart/chest feel weird after you first started the beta blockers. Getting weird (not painful) feelings, but they could just be in my head.

@Lifeat27 - I actually had my first Vitamin K/Coumadin interaction last week. I was feeling a bit better so was getting back to cooking a bit. One night I roasted a head of broccoli and split it with my husband; two days later we had a bunch of roasted Brussels sprouts. At my next INR test, I was at 1.4 after having been a fairly steady 2.1-2.5 for the previous couple weeks. I told the nurse that I was back to more normal eating habits, and she said "no problem; we will just adjust your meds accordingly." It'a nice to know they can work around this.

@TossNTurn - I am definitely feeling my anxiety build. I can already tell it's becoming a problem, and I am going to have to make an appointment with my GP. I'm really not a huge fan of therapy or of drugs, but I can't walk this edge very long. I had depression issues about ten years ago, and I fear getting back there. It helps knowing that so many others experience these feelings, though. It's hard to explain to people in regular life. (Seriously, though - what did people do before the Internet? This forum has been such a comfort to me!)

Just wanted to jump in. Sorry about your diagnosis. I echo what everyone is saying here. My DVT/PE was June 3rd. I still deal with the anxiety and I am lifer as I have been diagonsed with Antiphospholipid Syndrome.

As for the smoking, it is VERY hard to quit. I was a chewing tobacco addict for 15+ years until this past June. I quit June 7th. I wouldnt call it cold turkey as I did chew a piece of Nicorette here and there the first two weeks. However, it was the best gift I could give myself. I think we under estimate the amount of power or feeling of control it gives you at a time when everything else seems out of your control. Here I am 6+ months later and have not touched tobacco since. The next focus will be weight and exercise. I need to drop about 75 pounds......

Good luck and feel free to talk anytime. This board has truly made a huge difference in my life. I am mostly a lurker, however, I will chime in here and there.

B

@lifeat27 The beta blockers kind of numb me, that's why they work for the tremor. No pain or aching with them though. It could be described as a weird feeling though.

Sorry to hear about your diagnosis. I was diagnosed at 22 and was definitely stunned. At the time of my diagnosis they found one PE and a DVT in my arm. Two months later another PE was discovered. Just make sure to get your INR's checked regularly. Doctors initially had a hard time keeping me therapeutic due to my inconsistent diet as a college student, but now I've mastered the art of eating a consistent amount of Vitamin K. I take 10mg of warfarin daily, but was recently told that I should be able to come off of this soon. I also have high blood pressure now so I take metoprolol for that and haven't had many problems. It does get better but definitely takes some time and patience.