Hi, Sorry to hear about the PEs/DVT and while there are many scare stories on-line, there are also some good places to go to find out info. Have a look at:

Clot connect (front page and the "for patients" menu)
http://www.clotconnect.org/
Stop the clot (patient stories, videos ...)
http://www.stoptheclot.org/
Both are on facebook etc and there are many other sites with similar/useful info on.

The patients stories may be a useful place to start as many are survivors (some are not) and many get back to a near normal life. Both sites have excellent information about what PEs are, what anti coagulants are available, ... etc

Don't worry too much about what will happen in 6 months now (coming off anti coags). Being on Yaz and falls are possible risk factors, but you need to discuss this with your doc. Stockings are usually there to ease the swelling etc associated with DVT, so if you find this a problem in the coming weeks/months, it may be worth considering. I wore them initially, but didn't have many problems and so they had little effect. There is an article on one of the sites above discussing whether they're actually that useful.

Having large, bilateral, saddle PEs can be a large hit to your body in terms of meaning it may be several months for lungs/heart to sort themselves out. Give yourself a break at this stage, make sure you get some rest and see what you're capable of in the coming weeks.

Hi and welcome! I think you'll find some folks here that can relate to what you're going through. I had PEs in both lungs when I was 35.

Truthfully, it could have been just the Yaz that caused the clots. BC (birth control) has been causing clots since the 1950s and it still does. I know there have been class action lawsuits around Yaz and blood clots here in the US, but I don't know about Europe.

Hard to say if the fall might have caused a DVT. They might be able to do a ultrasound on your leg and look for any remaining clot there, but it also might have all travelled to your lungs, so you still might not know for sure. (And, I've never heard of anyone who got clots in their deep veins that were related to their varicose veins which are more surface veins.)

Right now, you've been treated for your clots and you're already on the road to recovery (even though it might not feel like it). Right now, you're protected with the meds and you shouldn't be at risk for any more PEs while you're on the meds.

It's hard to say what'll happen after you come off the meds. Tons of people clot once, recover, and go on with their lives and never clot again. If it was the BC that caused your clot, you've stopped taking it and you're unlikely to clot again. In a few months, you might consider talking to a hematologist, if you're still concerned about your chances of reclotting. There are genetic clot disorders out there that you can be tested for (although you have to be off the meds for that to happen) that can help clarify future risk for you.

Right now, however, that's all down the road. In the meantime, you'll need to refocus on getting yourself some support and babying yourself for a while. For me, at least, the mental recovery from PEs was much, much harder than the physical recovery. I dealt with really bad anxiety for a while and you should make a plan for how to deal with that so it doesn't wind up taking over your life. Maybe meds, therapy, meditation, exercise, or whatever helps you decompress and feel better. Also, make a plan to get help with the normal stuff in life for a while. The support from friends/family can really be helpful

Also, just my own two cents, but I would look into finding a new doctor. I wouldn't trust her again after such a grave misdiagnosis and it makes recovery much, much easier if you feel like you have your doctor on your side and looking out for you.

Hang in there! It does get better. Keep us posted on how you are doing!

Hi, Anders. I'm so sorry you are going through this. Just know that you are on blood thinners now and you are protected! I think your clot could have either come from your fall, or if the injury you sustained from the fall contributed to a period of inactivity. If you were laying down, or resting a lot due to your leg injury, that could have been a major contributing factor in your DVT/PE. You should be fine now that you have stopped taking birth control. A lot of people get clots because of the birth control, but do not have any further problems once they stop taking it. Also, your doctor will send you to a blood specialist and they will test you for genetic clotting disorders. So, you will, over the coming weeks and months, receive a lot of answers to your unanswered question. I know how overwhelming it can be for you. The day they released me from the hospital it was like a daze. It took me a while to come to terms with everything, but then it got better. The worst is behind you now! It can only get better from here. Don't be afraid to post your questions and concerns on this board. We've all be where you're at! We know what you're going through. I hope you feel better soon. Hugs.

Jeremy

Toss, it simply amazes me the amount of doctor who misdiagnose DVT/PE. If I ever become a doctor (highly unlikely) the first thing I will do for patients with swollen leg is ultrasound. If they have breathing problems, then it's off to the MRI for the lungs, I think it is much more prudent to rule out DVT/PE before you start trying to make any other diagnosis. Sometimes it can be hard because "like me" some patients have normal vital signs, and normal oxygen saturation levels. That is why ultrasound and MRI are important to rule out clots, or at minima a D-dimer test. I had large saddle PE and my pulse, blood pressure, and oxygen saturation levels were all within normal range. They misdiagnosed me for over two months because of this.

We're all here for you! I was diagnosed with two small clots, one in each lung - luckily none in my legs. We are 99% sure that they were caused by my birth control pills, which I have since stopped and will no longer take them. That alone already makes me much safer than before, and the blood thinners are the icing on the cake when it comes to treatment. It's really sad that hospitals release you only with information on what causes PE/DVTs, how it is diagnosed, and how it is treated, but little to no information on what recovery will be like. Luckily there are people here than can hopefully ease the anxiety and stress. I know that this board has saved me at least two extra unnecessary trips to the hospital (I went back a week after I was released because I was having shortness of breath again, yet nobody at the hospital told me that it was going to be like this while my body is still recovering). Don't be afraid to ask your questions, we may not have all of the answers, but we will certainly try! *hugs*

Stephano, you did the right thing by going back to the hospital. My new vascular surgeon told me to go to the ER if I have any chest pains. I was like "how do I know what is new and what is old with regards to chest pains?" He seemed adamant about me going to get checked out if I suspect another clot. I went back to the ER last October and it turned out to be a false alarm.

Man the entire ER was "hoppin" when they saw that I had a previous PE. It was like someone pressed the code red button! They had my leg ultrasound, MRI, INR test results, blood work, and diagnosis in under 2 hours. I apologized to the ER doctor for wasting his time. He looked me in the eye and said that if he was in my shoes, he would have made the same call!

I have since felt like going back to the ER a few times, but I think a lot of my pain is just residual pain and not acute. Any how, you need to do whatever it is that you need to do for your own health when it comes to getting checked out when you feel it is a necessity.

Hi there,

Thank you all so much for the kind replies! It helps me a lot to realise I am not alone.
I was not aware of any lawsuits about Yaz birthcontrol. Class action law suits like you are talking about are not very common in Europe or my country. I will Google about them and see what they come up with. I have made a posting in a popular womens forum here in my country to warn other people about Yaz and symptoms they should be looking out for. Maybe it helps someone down the line.

I will stay online and keep reading. It makes me feel a lot better.

Thanks!

I forgot one thing to the above.

I did not get a ultrasound of my legs or send to a hematologist. From what I've been reading in the USA the doctors do many more standard tests than they do here. The tests are available, but my doctor said the outcome doesn't matter because the treatment is always the same: 6 months of Acenocoumerol medicine.
I will try to insist on the tests to rule out any disease after 6 months. Getting to see the doctor at the end of June. So plenty of time to think of new questions.

The Yaz clot risk is fairly well known but don't just assume that this is the cause without getting the normal tests done for genetic ... causes. Again, some of these are done after you've stopped your anti coag as they affect the result (you mention this).

If they've found PEs, its probable that they won't scan for DVT because, as your doc says, the treatment is the same and PEs are usually regarded as more serious than DVT. That;s pretty much what happened to me (UK). If you have future leg problems, you may have an ultrasound at some point.

One thing I've found out is that the docs will rarely provide exact answers, so don't expect too much when you see them. The symptoms etc sometimes move at a snail's pace and you don't keep getting rescanned to provide new information.

It sounds like you're not too anxious about all this, which is good. Make sure you get enough rest.

:-) It is good that I don't sound too anxious.

Right this moment I am not very anxious since I am now on the medicine and have faith that they will work just fine.

I am very anxious however, what will happen when I come of the meds in 6 months. Makes me cry daily just thinking about it.

The worst thing I think about: my husband finding me dead one morning and him staying behind all alone. That just makes me cry and cry. :(

But trying to stay positive is important; I know....

"I am very anxious however, what will happen when I come of the meds in 6 months. Makes me cry daily just thinking about it. "

I can tell you how I felt at 6 months. I celebrated the day. I felt like a survivor, and I was excited to get on with my life. I felt much more equipped at that time to recognize the symptoms and to know that if something happened again I would know what to do.

I didn't get rechecked at the 6 month mark. I had a couple of pains / swelling in my leg in the first year, so I went to the doctor and had an ultrasound done to double check that I was OK and everything turned out just fine.

It's OK to cry and feel your emotions. They will evolve over time.

Sometimes going through the stats can make you more worried than helping. PEs are very easy to misdiagnose and this is probably the main cause of death. You sound like you had several days when you were misdiagnosed and while that isn't good, it isn't unusual and you survived.

Once you've had a set, its not surprising that you're (hyper)vigilant about anything similar happening in the future. If it happens a 2nd time, you're often very aware of the symptoms (I know!) and you get it sorted and you're on anti coags for life (typically). It would be very unusual that you simply die without there being any symptoms (breathless, coughs, back aches, heart beats, headaches ...). You may have a couple of false alarms ... but you know your own body and as Jeremy mentioned, the hospitals typically treat you more seriously once you've had an episode like this. It felt like I had a "go to the front of the queue" card for A&E in the NHS :-).

There are some stats about recurrence on the clot connect, stop the clot websites, some in a fairly academic paper and a few threads on here. It is very dependent on the cause of the clots and its really not worth being too concerned about at this stage. Your body typically needs 6 months to recover from the clots but there are no real tests which can predict whether you'll have clots that recur.

I have had a DVT and a PE . DVT in rt leg and a PE in both lungs. I am 4 weeks out. I am on 20mg of Xarelto and have an IVC filter in place. Does anyone know what the recovery time is? I am ready to feel better now. Am I asking to much?

HI, and welcome to the group, but so sorry you had a PE. All the messages are right on track.

I have had 2 PEs. The first was 7 years ago on New Years Eve/Day. I had been short of breath for a little while, and climbing a flight of stairs (getting to the bathroom) literally tired me out. For that one my O2 level was 90% sitting. I had a VQ scan, which is a variation on an x-ray, to diagnose it. I also found out from a nurse that a VQ scan is actually the "gold standard" - meaning it will definitively diagnose it. However, CT scans (also called a CAT scan) will also diagnose it. For my 2nd PE, this January, I had a CT

You are likely to feel tired for a while. That happened to me alot after my first PE. My 2nd PE was a little tired, but that is now gone. If I push myself I do tend to tire easily. The CT scan for my 2nd PE showed some infarction in the lung, meaning some of the lung tissue has been damaged. I am going for a follow up with my pulmonologist soon, and will follow up with her on that.

There is also a piece of exercise equipment to help you exercise your lungs. It is called - I believe - an incentive spirometer - or something like that. It has a big plunger and you suck in through a breathing tube. As you inhale, the plunger rises up, thus exercising the lungs.

With my 2nd PE the first symptoms was when I was taking the garbage out, which tired me out. The male ego had to come into play, and I was at work before it dawned on me to get some help. I called the Doctor answering service, and he told me to follow up with my Dr. The nurse met me at the door with an O2 meter, and it dipped to 86%. By the time the ambulance got there it was back up to 100%. The EMT asked the Dr. if I needed to go to the hospital. The Dr. insisted. CT showed multiple bilateral PEs in both lungs, as well as the infarction. (Think of the term myocardial infarction - aka heart attack. mycocardial = heart, infarction = death of tissue, so a heart attack means that the heart tissue was deprived of oxygen for too long. Pulmonary = lung, so a pulmonary infarction means the lung tissues were deprived of O2 for too long, resulting in the death of lung tissue.

I am now on coumadin for life. My INR is now stable between 2 and 3. For the coumadin to work a consistent amount of vitamin K is required. For me I put spinach in my morning omelet. I also had some green tea, which my hematologist told me about. The green tea thickens the blood, which means you need more coumadin. As the green tea wore off (I'm assuming it takes a couple of days), the blood will thin more, which when added to the coumadin, thins it even more. My INR spiked at around 3.8. Normal range for theraputic affect is 2 to 3.

I think that about does it. Welcome to the group and be sure to ask those questions.
Mike