That should have read numerous clots in my LUNGS

Hey philid - your story sounds very similar to mine. We're almost the same age, and I had no risk factors except the pill either (although I had been sick with food poisoning, so very dehydrated as well when I got PEs). Prior to diagnosis, I was super-active and a recreational athlete. Never smoked, and rarely drink. So, who knows hey? :) It is a mystery. They will run a bunch of tests on you to see if you have some identifiable genetic or other cause for clotting...but it's quite likely they'll find nothing.

As far as your symptoms go, they are TOTALLY normal. Pain, exhaustion, difficulty breathing, anxiety, major freak-outs over leg cramps or leg pain, check, check, check. Lots of people here will tell you the same thing. As far as when you'll feel "normal" again...honestly, it varies a lot. Some people seem to recover fairly quickly, and others take months or years. I'm at (almost) 6 months, and feeling pretty crappy. But I've had some good days and weeks in there too, so there is hope.

It's impossible to tell you what to expect, because it will really depend on *your* recovery cycle. But you'll hear lots of encouraging stories (and helpful advice) from people on here who are experiencing the exact same thing. Take care...and you WILL get better, eventually.

exhaustion, SOB, chest pain are all side effects that we all have experienced post PE's. Even once the clots are gone, many have these symptoms at different times and year or two post PE's. I would be looking for another doctor if yours it telling you you should be back at full strength 3 weeks out. That is BS. Try to do things in small doses to build up your stamina. This week is my 1 year anniversary and I let SOB and chest pain dictate what I would do - which was nothing. All of my pain disappeared April 1 and I started limping a few weeks later. Tore the ligaments in both hips because my core muscles were shot from 10 months of inactivity. The recovery from this injury can make the 1 year recovery from PE's look like a day in the park. I knew that I could do things with the chest pain - that it didn't make it worse but I chose not to do it - like walking and getting some exercise. I am now paying for that mistake. Am doing intense physical and pool therapy for 2 months to start with. good luck to you and listen to you body. Only you knows what you are feeling.

Hi philid. Everything you're feeling is normal. I'm fairly new to this (2.5 months since diagnosis) and recovery for me thus far has been up and down (with chest pain, SOB, fatigue, anxiety), which appears to be par for the course for most people.

Try to be patient and ride this thing out whilst taking care of yourself and building up your strength slowly. And try to engage in some of the things you love to do. I think this helps to take your mind off things and probably speeds up your recovery.

Looking at the experiences of others, and hearing their stories, gives me confidence that I too can overcome this, or at the very least learn to cope with it.

Philid exhaustion is most definitely a side effect. 3.5 months out I still get exhausted. Your body is working hard to heal itself and it needs rest. INR is a tricky thing and it can take time to regulate. It did for me. I wasn't interested in doing anything outside my house and still get somewhat nervous at the prospect. But I am going to try today actually to get outside since it is beautiful out.

You are only 3 weeks out so be kind to yourself.

You have been through a lot, listen to your body. Pace yourself space tasks out so that you can have rest time in between. Try not to worry about the coumadin level. Your level is going to bounce around. The folks from this support group have helped me to live my life and let the doc figure the right dose of medication needed to keep the coumadin level between 2 and 3.

You have been through significant phyical and mental stress and it will take time to recover so be patient with yourself and know it is ok to feel tired. It is a good thing that your doc is working you up to see what might have caused the PE. Just understand that they might or might not find a reason for your PE. We our here for you and take care of yourself.

Hey! Welcome to our little club! Glad you are here to join us.

It really sounds like your docs don't know what they are talking about. Exhaustion is a very common after-effect of PEs. Your heart is tired from pushing blood past the clots. Your body is tired from not getting quite enough oxygen. Your lungs are possibly damaged because of lack of oxygen. Basically, there is a lot going on to recover from.

My cardiologist compared it to getting a cut from a knife. Even after you take the knife away, you still have a lot of healing to do! So, be prepared for a slowish recovery. Some of us bounce back faster than others.

And, seriously, birth control (BC) can cause clots all by itself. I know they are being thorough investigating all the possibilities, but BC has a long history of causing clots and I'm always surprised when docs are knocking themselves out trying to find the "real" cause. Some folks just don't do well with the hormones (myself included) and we get clots.

As for your INR, this is a pretty common problem. Lots of us have trouble getting it regulated, even if we've been on it for years. We'll have times when it drops or bounces up. As long as you're getting your blood draws regularly and have a doc who is good at making dosage changes, you'll get it right eventually, but it can take time.

As for the leg cramps, I used to get those all the time after my first DVT. After my PEs, I developed orthostatic hypotension and part of the treatment was to increase my liquid and electrolyte intake. So I started drinking more water, added a magnesium pill to my diet, and started eating a banana a day. Not only did the otherostatic hypotension disappear, but so did the leg cramps. And I lost weight! I would make sure that you are staying hydrated and getting enough to eat. It can be hard following a traumatic event like this, but it might help you out.

Hang in there .... you're in the right place! Keep us posted on how you are doing!

What kind of doctor primarily treat you for the PE? I was surprised I have never seen a pulmonologist, particularly bc my clots caused necrosis in my lungs and I have permanent lung damage, and I have asthma. I've only seen an internist...both in the hospital and now that I'm out. I don't even feel like I know what questions to ask. I'm confused about vitamin k and my diet. I feel like bc the docs have said it's a mystery ....bc I have so many lots an my genetic tests were normal. I understand they may never know what caused it, but I don't want to be a mystery . I had a horrible stressful month bf me PE (stalking ex boyfriend, work stress, and a fire where the fire dept busted my door down with a hatchet to rescue my pets)...and bam 5 days later, I'm in the ER. So I think it's too coincidental and will always believe it's stress.

Meant to add..bc they don't really know why I have so many, everything is trial by error

Oh my,
You have been through a lot. Are you still on medical leave or trying to work? As far as the doc issue goes it is your life and do not be afraid to be asserative and ask for a consult/referral to see a specalist.

I'm working half days. I'm a lawyer and not working at all is more stressful. So I work until about 1 or 2 and when i start to get tired, I leave. If I do too much, I get a lot of pain in my upper back and lungs. Bf this I was working 11 or 12+ hour days.

That is great because you are doing the right things. Your building in structure and your not over doing it. Good for you.

Honestly philid, you may never get a clear answer on "cause", and as TossnTurn says, the birth control pill might have done it all by itself. I'm certainly hoping that's true in my case because there really is no other clear factor! As for stress, I got my PEs while on vacation after a short bout of food poisoning. It was a great stress-free vacation too :)

I hear you on not working at all...the only thing that's helping me feel somewhat "normal" through this whole thing is work, and so I haven't missed a day so far (other than a few hours here and there for doc appointments). Interesting that you're getting pain in your upper back and lungs...I've had that pretty bad for the last 3 months, but I never linked it to doing "too much" at work. Hmm. Something to think about.

Talk to your doctor about your diet etc. Many people with PEs or DVTs see a hematologist and/or a respirologist. I'm surprised they're telling you already that you have permanent lung damage, 3 weeks out...I had a number of areas of lung infarction initially as well, and a *ton* of clots, but those have mostly all healed or resolved over the last few months. Your lungs have an amazing capacity to heal themselves.

Take care & keep posting with any questions.

Hi philid....my story is quite similar to yours. I'm 34, healthy, non smoker, occasional drinker, and had been on BC for 16yrs. I am blessed with two gorgeous kids.
I'm 2mths on from my PE diagnosis and by gosh I have struggled, emotionally, physically, mentally. But I am comfortable with the way life is right now. There's nothing I can do about it except go with it.
I think because I had to go off BC, that is the emotional part. I'm horrible to be around, but physically it was the aches and pains in my body that got me. I went through the headache stage for 2 weeks or so. My period pain has returned with a vengeance too.
I guess what I'm trying to say is that you get to know your body really well. I've learnt when to worry and when not to. SOB and chest pain comes and goes but I don't stress anymore.
Just take your time with this. Your body is healing the way it should. I still do karate and work full time, only taking time off for medical appointments, but I am one of the oh so very lucky ones. And I know I should slow down but this was my life pre PE's and I'm going to continue it!!!
Take care philid, and this group is great to just read and know that you're not alone :-)

Bursts of energy and bursts of exhaustion are normal for PE. I remember the day after I got out of the hospital I cleaned the whole house; 2 days later I couldn't get dressed without help to go to a doctor appointment.

I would suggest seeing a pulmonologist, if you aren't already. My internist treated me this whole time and now that I'm getting ready to get off of meds my internist NOW wants me to see a hematologist, pulmonologist, cardiologist, etc. (He doesn't want to make the decision to pull me off of the meds, even though its been over 6 months and a CT Scan came out clean.)

After seeing the pulmonologist last week, I realized that I should have been seeing him all along - he was SO much more knowledgeable about PEs. When I'd see my internist every week, he would say he doesn't understand why I'm so tired. But I knew from folks around here that being exhausted is part of the game and I would be the for a few months. Ultimately, I just use/d the internist to get my INR numbers and all of the other info about the diagnosis, what to expect, etc came from the internet and the people on this message board.

Take it easy. :)