Hi,

I think since you just started these meds, it's too soon to tell if that's what is causing your fatigue. I suspect is more a combination of stress / anxiety and recovery from your PE plus if you're getting a virus, that can be part of the equation.

Don't get freaked out about the meds. Are they serious medications?Sure. Does it mean you have to sit home and do nothing out of fear? Absolutely not. You won't be on lovenox for long and usually it's two injections a day so you're not doing anything above and beyond how most people are treated. Your INR range is standard so just try to trust that even though it's all new to you, what they are prescribing you is very normal for someone who has suffered a PE.

I've been on and off lovenox over the years and have been on warfarin for over 6 years and I pretty much do everything I did before I was on it and I've never have come close to a serious bleed. You take your normal safety precautions that you would if you weren't on warfarin, ie wear helmet when you bike, a seat belt in the car, etc. It's really just a matter of being mindful and don't do anything outrageously dangerous, like knife swallowing or juggling chainsaws. Seriously, the meds are what they are, but they're are closely monitored and are completely manageable.

It may make you feel better to pick up a medical alert bracelet (there are cheap silicone ones you can buy on line) that says your on warfarin so that in the off chance something does happen like a car accident, a paramedic will see that and know there's a potential for a bleed.

Check with your doc if you have any limitations physically or any exercise restrictions and if not, then I suggest you start doing some kind of mild exercise, like walking, stationary bike, swimming. Start slow, and then you'll find your stamina will rebound so that you can move up to more strenuous exercise after a while. That will build your confidence as well.

You're going to be ok!

yes..i like what rmb has to say. They have been such a good support of people here in the group!!

Hi and welcome! Ditto to everything that RMB had to say. I've also been on and off both warfarin and Lovenox and I've never had a serious bleed either. Still do most everything I would have done before: walking, biking, hiking, There's no reason to feel like you have to live in bubble wrap, or you're giving the meds far more power than they deserve. An INR between 2-3 is pretty standard. I've never noticed any side effects from the warfarin, regardless of whether my INR is too high or too low. As for what you can expect when you reach 2-3 INR? I wouldn't expect anything different that what you have going on now.

As for feeling exhausted, I would chalk that up to the fact that you're so over-stressed and not getting as much sleep as you need. Also, exhaustion is very common for PE recovery. PEs tax some of the most major systems in the body (circulatory, respiratory) and its not something you'll bounce back from overnight. You do have an advantage in that you were in great shape before all this started, so you might have a faster, smoother recovery time. There are some people who say that warfarin makes them tired, but at this point, I'd focus on the fact that you've been through a major wallop--both emotionally and physically--than focusing on the meds.

Keep in mind also that these meds are your friends right now. They saved your life; they took the pain away. They're keeping your body from forming more clots so the damage caused by the one you have can start to heal. They're helping you so you can get back to your normal life faster.

Take a deep breath! You're going to be fine. The problem has been found and is being treated and you're on your way back to normal. And there's no reason you can't be normal even while you're on the meds. Keep us posted on how you are doing!

thank you all for the awesome advice.. just a quick update, just got back from visiting the doctor.

after being on lovenox for 3 straight days, and 2 days on warfarin (10mg day1, 5mg day2) my INR was at 2.6 from the first test. They were astonished because they told me it doesnt typically jump that high from 1.1 prior to treatment less than 3 days ago. They tested my left middle finger after, and it showed 2.4. At this point they told me to take half a warfarin (orange 5mg) every day until Monday's prick and see where we are at. They told me to stay on Lovenox injections until Monday, and do not believe i require it anymore after monday. I am ecstatic because i cant stand poking my stomach anymore than i have to.

As for exercising, i was told to stay away from weight training for at least a whole week to give my body some time to settle. They told me walks would be fine, and other non taxing exercises. Good thing today is, its almost 50 degrees for once, and i went for a long walk and it felt fine.

It just sucks prior to this PE, i was still bench pressing, deadlifts, squats tons of other exercises at the gym. I noticed since the last month i've had some light to moderate chest pains but without knowing it was PE, i'd never let it stop me from working out. I hope this helps to my overall recovery. I am a pretty frequent gym goer, so i figured by next week, ill start with minor cardio workouts + stretches, and ease my way back into strength training programs a little bit at a time just so i dont roll over and die on some weights LOL.. :)

Thanks to all the positive advice, i really do feel much more confident about the medication ive been taking. I was more stressed and anxious about the medication im putting into my body and what overall consequences may be that would stop me from living and enjoying life, but from what it seems i am over thinking way too many things when life should be focused one day at a time, in a simple manner.

You might consider visiting the Clot Connect (one of the larger blood clot organizations) page to learn more about working out and blood clots at this link:

http://www.clotconnect.org/patients/faq-frequently-asked-questions/faq-when-can-i-resume-physical-activities

There's also an interesting article about athletes and blood clots here:

http://patientblog.clotconnect.org/2011/03/02/athletes-and-blood-clots/

Many athletes have had blood clots. The argument is that they can sometimes be more at risk because they tend to get a lot of minor injuries, have a lower resting heart rate, and tend to get very dehydrated. The most recent athlete I know about who had PEs is Serena Williams. She had PEs in 2011, but wound up coming back to win Olympic gold, a Grand Slam, and a number of other events.

thank you for the links, i actually read through all the good information

so onto my recent episode today..

I am 3 weeks into my treatment.. i am still on 2.5mg of Warfarin and it has been doing great keeping my INR between 2.3 - 2.8. The doctor has me visiting for INR tests once a week now, instead of every few days. The chest pains has subsided and if i were to rate the pain it would be 1/10. Today, I headed to class for the first time in three weeks. I felt great until i reached my class. About an hour into the lecture, the chest pains that i was no longer feeling much of, randomly hit me on my righter portion of my chest. This lasted for about 5-10 seconds, and got me extremely anxious. I turned pale white, and got nervous which did not help the situation. Once i took a few deep breaths, and walked out of class to drink a ton of water, i felt alot better. At this point, i realized my very first episode that landed me to the E.R was similar, but this time it was not as EXTREME where i couldn't breathe. Does anyone know if this is just me overthinking the situation and having an anxiety attack?

I have been walking everyday, and doing minor stretches and have felt absolutely great. I can even tell the treatment is working as the pains are no longer medium to severe. Could this be a very minor heart attack that I feel? No way right? Am i just overthinking this..?

On the plus side, i feel alot less exhausted when i do cardio and stretching excercises, but after today, i dont know if this anxiety/minor episodes will kick in randomly

i dont have the confidence to live my life normally if these episodes show up sporadically and randomly where i cant anticipate it

i mean.. it shouldnt be fatal to feel minor pain on & off? some days better than others? I do feel extremely tired, and dizzy after the minor episode earlier.. what do you guys think? thanks in advanced

It honestly sounds like you're making good progress. There are often many episodes like this in the weeks/months following diagnosis (starting treatment) and while it can feel frustrating that things are not "cured" immediately, you've got to remember that the anti coags simply stop your body from producing new clots and that its left to your body to recover (heart, lungs, ...) which may take several months.

Its good that you feel able to do some exercise and go to class a few weeks after your PE, so look at those positives rather than concentrating on the times when you feel worse.

Yeah, I agree with Rosiethecat, that it all sounds kind of par for the course, and it's true if you're getting stressed and anxious about it, that's just amping those symptoms up even more.

Check in with your doc if that would give you some peace of mind.

Also, what you're describing occurring during your lecture sounds like a panic attack. I mean, I can't say that for sure, but about a month after my PE, I had one, the first time I'd ever experienced anything like that in my life, just sitting at the dining room table taking to my husband and then BAM, I went dizzy, my chest hurt and my heart started racing and I literally felt like I'd left my body. So freaky and so scarey. I thought I was having a heart attack, stroke, another PE, you name it. And then it was over.

One thing I had periodically for the first couple of months after my diagnosis, was sudden on set of chest pain. They only way I can describe it is that it felt like someone kicked me in the chest, or like a lightening bolt when through my chest. It would go away as quickly as it came. Scared the crap out of me. I'd be laying in bed and it would happen. Not sure what that was about.

Make sure you're staying well hydrated. I have trouble with that myself and I've had to go to the ER because of it, thinking I was having a heart attack because my chest and neck hurt and I was dizzy. The docs would run some tests, determine I was dehydrated, pump me with fluids and I'd then feel like a million bucks. That happened a few times to me when finally occurred to me that I may need to take better care to drink more water.

You are so recent to your clotting event. It really does take some time for things to even out. I think you're doing really well too. And you have to accept that you can't predict these episodes. They may happen so what can do is recognize them when they do happen as part of your healing. That's where you have control. And the more you remind yourself that you're going to have some days where things are great and some where things sort of suck for a while, then it won't feel so unnerving when you have moments where things feel out of whack.

What you describe sounds pretty normal to me to. I had "episodes" like that up until about 11 months after diagnosis. I mean, I started feeling better and better, but every so often I guess I was just too active or had done too much or the weather was too hot/cold/humid for my healing lungs. I'd wind up with increased pain, SOB (shortness of breath), and exhaustion. A little bit of rest for a few days and I'd be much better, but I really did have to rest and give my body a chance to heal.

I'll tell you that the first time this happened, I wound up having a repeat CT just to look things over. Turned out that my PEs were completely gone at about five weeks, which made it clear that I was just feeling healing pains.

I have to agree with the others that it sounds like you're doing really well overall and bouncing back pretty quickly in a lot of ways from the PEs. But, yeah, it sounds like now you might be dealing with some anxiety (and most of us do!). It might be worth talking to your doc and seeing what he suggests ... maybe some anti-anxiety meds would be helpful for you. I did anti-anxiety meds for two years after my PEs. I also saw a therapist who worked with people who had survived traumatic events. Both very helpful. If that's not your thing, consider other ways of dealing with the anxiety like meditation, journaling, etc. It is important to recognize and deal with anxiety (which is another medical issue, after all) before it takes over your life.

Recognizing it ... and figuring out how to deal with it ... put you back in the driver's seat. Hang in there!

thanks for the input guys, as rmb said, i think i had a similar feeling, where it felt like it could been anything but the fact that i tend to overly think things right after a mini-chest pain session, didnt help

i just figured after few weeks on treatment, i have been feeling great, no pain until i reached my class.. almost like it scared the living crap outta me

i really thought i would have to head to the E.R to do another CT scan just to make sure i was good, but im glad i held back, before they start calling me paranoid or what not

prior to me having this P.E, i am a well laid back guy, not the type to ever be anxious, nervous but ever since this P.E, it has created this anxiety randomly that i wish i never had. I am usually in control of how i feel especially with stress..i'd go out and walk it off

it has been much nicer out, almost ~60 degrees, starting to do my daily walks a bit more and i know for a fact the anti-coag therapy is working, as i can tell my breathing is definitely much deeper, its weird to say i can feel my lungs/chest are clearer than ever.. its just hard to describe that its working

also i forgot to mention, in the event they told me where even if my P.E is gone.. they still need me on warfarin for up to 3-6 months and told me there is no need for a follow up CT scan to make sure my clot is gone.. how will i know if it's definitely gone and not something i should worry about in the future? Should i just follow the symptoms now that i know what to expect should another clot arrives? Do you guys follow up with yearly CT scans? This could get pricey.. my last 3 ER visits alone were almost 7 grand.

No, most docs don't do a follow up CT. They will sometimes do it if the clot was massive or they have concerns they're not resolving, but usually, you stay on the meds for however long they tell you and then you stop and go on an live your life. Pretty anticlimactic

Your doc may recommend genetic testing after your done with warfarin to determine if you have any genetic clotting factors that prompted the clot. So I think that's something you'll want to discuss with your doc as you get closer to the end of your treatment.

Not many people wind up having repeat CTs before coming off the warfarin. Some do, but it kind of depends on the doctor and the patient.

The thing is, there has been a lot of publicity and studies in the last few years about the dangers of being exposed to too much radiation. A CT is 200-300 times more radiation than an x-ray and it is a good idea not to have more than you need. At this point, I've had quite a few (both for PEs and for sinus issues) and I avoid all radiation that I can if it isn't absolutely necessary for treatment at this point. And, no doc would recommend yearly CTs "just to see." The radiation is just too much and there are other long-term dangers from that.

The thing is, by six months, the clots are considered pretty much resolved, regardless of whether they're still there or not. The "perfect storm" that happened to cause the clots is well past, the meds have given your body a six-month window to work on healing without the pressure of perhaps dealing with more clots, and any clots that are left are usually greatly reduced in size or have stabilized and become part of the vein wall. After six months of treatment, clots aren't considered dangerous any more, even if they are still there, so it isn't something you need to worry about. For the most part, I don't think most PEs last that long anyway, but DVTs can (I still have remnants in my leg from DVTs in 2005 and 2009, but they don't cause any issues.)

So, yes, the way you'd know if you had more clots is by the symptoms. Most of the time, that's the only way any of us know. There are a few stories of people finding PEs when being checked for other things, but that's pretty rare.

Just a quick update, got to speak to a doctor today finally after 3 whole weeks. Last few weeks i've only checked in with nurse practitioner who pricks my fingers.

I was given Xanax (0.25mg) to only use when needed to deal with anxiety since i been having random panic/anxiety attacks on and off when i feel any kind of minor pain. I have told myself to stay away from using it unless i feel an urgent need for it. But for now, after being able to speak to the doctor, it has help eased my stress/anxiety just a bit. Got my fingers pricked and i'm at 2.9 (been on dosage of 2.5mg everyday). So far my last 5 results have been all around 2.4, 2.6, 2.7, 2.8, 2.9. The doctor has seen a steady upward trend so they're thinking about putting me down to 2mg coumadin depending on my next testing.

Onto the good, the shortness of breath has still been there. And noticably so, but i have decided not to let it consume me. I've been going out for more walks than ever, and doing minor cardio activities such as biking around the neighborhood, and shooting the basketball around. it has helped ease my tension off anxiety/stress.

Also, yesterday i was cleared to go back to the gym and train, except for the fact that i must stay away from weight training, and not over-exert myself. I figured since i know exactly what i'm doing, i started doing 1/3rd of the weights i normally start with. I was still able to bench press, tricep extensions, mid rows, and curls. I kept most of these exercises at a bare minimum. I also lost about 7 lbs since the diagnose. Still a little bummed out, but i feel like this will help me and keep me sane considering i havent been to the gym in almost a month. The SOB was a nag, and persisted but i took everything wicked slow and its sad to say that it felt like an achievement.

Little by little, i will slowly get back to my normal self. I feel like minor activities have helped get my mind off thinking about our condition. As long as i have something keeping me busy, it has helped. Has anyone felt dizzy, or like minor vertigo when they attempted to be a little more pro-active? I'm not sure if all this exercises are helping because i still feel minor pains on and off but, i figured its a start, and what worse could it possibly be, than to sit around feeling helpless and let a clot consume me.. i refuse to let it take over my life ... LOL