Hi and welcome! Glad you found us! It definitely sounds like you've been through the wringer. Having clots is hard enough but coming on the heels of having a baby (and, I'm sure, coping with a newborn), you've got to feel so overwhelmed!

I'll tell you first off, that everything you're describing sounds pretty normal for the first few weeks/months of recovery. The pain, the palpitations, the anxiety. The first few weeks can really be awful as its hard to tell what is just healing and what is something that ought to require another check from your doctor.

First, I think I'd be really skeptical of the high d-dimer during pregnancy being "normal." I mean, a lot of things can cause a high d-dimer, sure, but combining a high d-dimer with a family history of blood clots, leg pain, and pregnancy (which can also make women hyper-coaguable), I really think they should have checked you out a little bit more. Might have prevented the clots in your leg from breaking off and getting to your lungs. (My guess ... I know they didn't check for a DVT, but it certainly sounds like you have one.)

Also, many doctors seem to think that you need to have ALL the signs of a clot to have a clot, but I'll tell you that isn't true. My first DVT, I had swelling and pain, but no discoloration. My second DVT, just the faintest of pain that reminded me of the first DVT but nothing else going on. When I had my PEs, I had no leg pain at all and no symptoms except for severe SOB (shortness of breath) and the most mild of coughs. No spitting up blood or any of the other symptoms that they worry about. Sometimes you really only have one or two symptoms ... and, based on that, some docs will tell you that you don't have a clot and they're idiots.

So, I'd imagine that the pain you feel in your leg is either your existing DVT (if it hasn't dissolved or it didn't all break off and go to your lungs) or it is where the DVT was. Blood clots leave tons of damage behind them: starving parts of your body of oxygen and blood while flooding other parts with oxygen and blood. The ones in your lungs tax both your respiratory system and your circulatory system. I mean, they are *really* hard on the body and it isn't something you'll bounce back from overnight. That pain in your leg could come and go for a while and the same for the pain in your chest.

The chest pain, palpitations, and etc. are probably a result of the clots in your lungs. I think most of us deal with those, for sure. It can come and go for quite a while. For me, it always tended to get worse for a few days if I had been pushing myself too hard or had been out in really hot/cold/humid weather. I'd spend a couple days lying around and resting and I'd start feeling a little better after just taking it easy.

It could also be anxiety, which most of us also deal with after diagnosis. (I did two repeat trips to the ER and both times it was anxiety causing the SOB, chest pains, etc.) Either way, its no fun having that going on and it definitely can make the anxiety levels go up, especially after getting totally blown off by your doctor.

And, let me say, your doctor is a jerk. I'm not sure what part of the world you're in, but you'd do well to find a new doctor if you possibly can. Preferably someone who has dealt with a few clot patients and understands the symptoms and anxiety that tend to come and go during recovery.

He is partially right that once you're on anticoagulants, there isn't much else they can do. Clots in your leg are treated by anticoagulants, clots in your lungs are treated by anticoagulants. You'd get pretty much the same treatment that you're getting now. It is very, very rare to get another clot while on anticoagulants. It can happen, but it is pretty darn rare. It was more common with the older anticoagulants, since you had to "stay in range" to safely prevent clotting with those. The Rivaroxaban should be more one size fits all, and you ought to be covered.

BUT, I think you should definitely be checked for a DVT (or at least signs that one was there). You should be given advice on keeping your leg elevated (try that, and see if the pain reduces), whether to keep light heat or cold on it (different doctors recommend different things), and whether a compression stocking might help with the pain you're having.

Also, if the pain is really getting severe, your doc should talk to you about pain killers that you can use for a while to help get through the early stages of healing. And, if your anxiety is starting to take over your life, he should be able to offer suggestions to deal with that. (I did both therapy with a specialist in patients who had survived traumatic events, and I took anti-anxiety meds ... but ya gotta find what works for you.)

I will say also that a lot of doctors really think that blood clots are an acute event. You get diagnosed and get on the meds and they think you'll be find it a week or two. For some reason, they don't think about the level of trauma clots can cause and how long it will take to recover from that. You'll see them and they'll be baffled that you have ongoing symptoms or that you're dealing with anxiety. If that's the case with you, you've got to find a new doctor. Having someone who you feel like is ON your side can really make all the difference.

Definitely take some time to read around here on the site, both here and in the DVT group as well. There's lots of good help here and lots of good people.

Hang in there! Keep us posted on how you are doing. And congrats on your new baby!

TossNTurn is right on. I really agree about the importance of having a doc you can work with. It makes a huge difference. I am so fortunate that I have doc that is so responsive. I had all kinds of assorted aches and pains after I got out of the hospital. It was a huge help that I could call her and leave a message, and she'd call me back the same day to help me figure out what was going on. I really hope you can find another doc. Like TNT said, you've experienced a huge trauma to body and soul. Don't be afraid to seek help for the emotional fall out of such a stressful event. Also, I have to say thank goodness for this site and all the wonderful people who post here. They've helped me so much.

Hope things are better for you soon.

Wow thank you both for such great replies. It really helps when someone says you aren't over reacting. I really am in pain and I really am anxious and sometimes I think people around me think I'm being a bit dramatic but it's been a scary time for me and they don't get that. It's not exactly a bundle of fun being told you've suffered something which could have killed you, especially after having a new baby and 2 older kids at home. Every time I think about what could have happened I am in bits but slowly coming around to myself then this pain starts up again.

I did see a great doctor in my practice last week. He was very supportive and said it can take a long time to recover and anxiety is very normal. He also ordered some more blood tests and is writing to the haemotologist (sp) so see what the follow up plan is as he agreed that the hospital discharged me with no advice or information and he wants to see me again in 2 weeks to see how things are. The appointment yesterday was with another doctor in the practice (there are about 5 doctors there, I see whoever can see me quickly if it's urgent and I felt it was urgent yesterday) and he just wanted to get home (last appointment of the day) and did some quick checks and ushered me off. I'll be seeing another of the doctors next week for the post natal check up so I'm hoping she can help me with the anxiety part of all this.

To me it was just strange to go through this, given very limited information about what had just happened while in hospital and then sent home after 2 days with no mention of after care or recovery. I've had to google information about PE's, recovery, rivaroxaban (although I was given an info leaflet on that at least) and anything else I need to know as there's no medical person I can turn to. Thankfully I've found this forum now and I am going to read as much as I can here.

Thanks again for taking the time to reply x

Hi Ella- I am a recent newcomer myself to this page and I feel as lucky as you to have found it. If it puts your mind at ease, I am 7 weeks to the day (I am still charting it like it is a special anniversary or something :P) since my bilateral PE. I have definitely experienced all the symptoms you are talking about. I am definitely having chest palpitations and, as TnT, said, it is often when I am doing more activity. I can imagine with a new baby, you are doing plenty of activity! I am also having a good deal of pain in my calf, where my blood clot originated. Also like you, I have met plenty of doctors along this new journey that have come off as dismissive that once you are on the anti-coagulants, there is nothing further to be done. Doesn't feel good to get this information in this way, but I have a feeling they deal with the aftermath anxiety a lot and have gotten somewhat resigned to it. Fortunately, I have a GP who is very interested in my diagnosis and my post-PE health. During a regular check up she asked if had any pain at the moment (this was last week) and I said I still had pain radiating from that calf (down almost to my ankle and up almost to my hip) and she immediately ordered an ultrasound of both of my legs (not just the one I said was hurting). They definitely found clots when they did the ultrasound, but couldn't tell if they were old or new because the ultrasound they did in the hospital didn't show the entire area that the new ultrasound did. My doctor took that info and consulted with a pulmonologist and a vascular surgeon, both of whom told her there was no additional treatment that they would recommend, So even with another doctor asking the specialists and with tests showing a possible additional blood clot, the answer was still the same as we were told as patients. This weekend, I took on the rather stupid job of making 400 cookies for a wedding and by Saturday afternoon I was having such chest pain that I thought I was headed for the ER. It is now Tuesday and I feel "normal"...my post-PE normal. I hope this helps in any way Congrats on your newborn and I wish you well!

Sorry everyone else is suffering but it is really good to know I am not alone. Wilsteph, they didn't even scan my legs at the time I complained of the pain during pregnancy, nor did they scan them when diagnosing my PE so they would definitely not be able to tell if any new clot WAS new for me! Your GP sounds brilliant.

It definitely can be hard for the first few weeks. I think many (most?) of us are let out of the hospital without much idea what to expect. I'm not entirely sure that this in the doctor's fault though ... as I said, many of them only see clots as an acute event that isn't a big deal after it has been diagnosed and treated. The doctors in the emergency room or the hospital probably very rarely deal with people who are recovering from PEs and they probably have no idea what most of us go through ... so they can't tell us what to expect. Still... I do wish they'd make a handout or something to give us!

That's why it really is helpful to have a doctor that you like. I'd make a point to get appointments with the doctor at your clinic who responded well and treated you with empathy. That can really make all the difference in recovery ... to have a doctor that you have a relationship with and who knows you and your situation.

I swear, the most helpful thing my doctor told me during recovery was, "I'd be surprised if you *weren't* anxious." Like you said EllaBella, sometimes you just want to know that you aren't going crazy. And my doc was good about that.

Don't be afraid to be a "bad" patient and be a little assertive if you need to in getting answers from your doctors. No one is as invested in your recovery as you are...

Just wanted to ask something else here (after trawling the net trying to find this site again as I'd forgotten the name of it!).....

Ok since my initial post I've seen my GP a few times and he followed up with the hospital and I was finally seen by the blood specialist who pretty much dismissed the whole event as just something that happened because I had been pregnant and that the fact that my sister had a DVT during her pregnancy that made him even more sure it was just hormone related. I would have thought it would have made a stronger case for something actually being wrong in the blood but he wouldn't even consider it and basically told me 'you'll be fine, it's done with now' even though there's been no tests, scans or anything done since except a few blood tests my GP had done which were just for checking thyroid etc. I just felt a little miffed that they didn't want to do any further tests as both GP and the doctors who dealt with me at the hospital said they would have thought some investigation into it would likely be done simply because both me and my sister suffered the same thing.

Anyway that's not what I came here to ask (seeing as there was no question in there lol) but I thought I'd update while I was here. The thing now is a crawling or tingling sensation in my back which I am assuming is my lungs. It feels like there's spiders in there clawing at my back and my GP said he has no idea if it's related to the PE. It's not constant but it happens a LOT and right now my left lung is tingling while my right lung hurts a little. The tingling itself is just distracting, not sore. I'm just wondering if this is normal? It's been happening for about 4 weeks now and I'm 12 weeks post PE.

I remember when I was ~ 3-4 months out from my original PEs and it felt like someone had a spiky roller and was rolling it across my chest/lungs whenever I did a tiny bit of exercise. Different from what you describe, but PEs affect people differently. I'd just keep an "eye" on it and if things seem to be getting worse, go back to your GP. If not, things should improve a bit in the next couple of months.

What @rosiethecat said is pretty much right on. You'll get all sorts of odd aches and pains after clots. Keep an eye on them ... if they get constant or suddenly get a lot worse, that's the time to head to the doctor.

As for getting your blood tested, pregnancy is a noted cause of blood clots. Genetically, women tend to get "clottier" around the time of giving birth since it would have helped all our female ancestors keep from bleeding out while giving birth in log cabins in the wilderness.

Many times, if you've only clotted once, doctors go with the obvious cause (and there's no reason to assume it isn't the obvious cause). If you clot a second time, that is usually when they start running the tests. My first clot, I didn't get tested. But, my second one I did, just because at that point they wanted to figure out if there really was something going on with me.

Some people will get tested after only one clotting event if the event is unnecessarily severe or if they have no plausible reason to clot at all. But, I think most people don't until they start showing a pattern of reclotting.

It's possible that you and your sister are just both particularly susceptible to the clotting factors in your blood during pregnancy. If you get pregnant again, something to talk to your doc about ASAP. If you don't, then I would agree with your doctor that (hopefully) you're good to go.

I mean, there's no guarantees, when it comes to health on anything. Odds are, you may never clot again, but there's no one who can guarantee that. Hopefully, at this point, all your have to do is recover from the clots and you'll go on with life, clot-free.

I also agree with what the other ladies here said, it's really not too uncommon for thrombophilia testing not to be done after just one clotting episode. Some doctors do it, and some don't. I have pretty mixed feelings about testing myself, since I've been tested several times after clotting several times and am negative for everything. I mean, obviously there's a problem, but they can't detect what it is. It's a growing field, so that means there are still a lot of gaps. Still I would tend to think like you do, that your sister having clotted also, it seems to make a stronger possibility of a genetic issue. However, even if a thrombophilia is discovered, it doesn't necessarily mean any change in treatment, and that may be why the hematologist doesn't feel it's necessary to test.

However, I did want to add one thought, although I would imagine this was something which the hematologist would have considered as part of your history. But have either you or your sister had any miscarriages? There is at least one thrombophilia that I know of that they know is a factor in miscarriage, so if either of you has experienced that, especially in the early part of your pregnancy, then your case for being tested is stronger, especially if you want to have any more children. Having a DVT/PE history should mean anyway that you start anticoagulation as soon as you get pregnant (or before if possible), and that's regardless of any thrombophilia. So the main thing is to be proactive with any future pregnancies.

By the way, congratulations on the baby you recently had, I'm very sorry you had to go through PE along with that. My PE was the same, I think I actually had mild PE from the day he was born, but it didn't get critical until 4 weeks postpartum. It's a miserable thing to try to balance PE recovery with caring for a newborn.

It's good to know, though, that you're generally feeling better despite the odd sensations. I did get intermittent pain and other sensations in my lungs through the first year, particularly when my activity level increased or if there were changes in weather. You might try to pay attention to whether there's any type of pattern to when you get the sensations, and that might help you feel more calm about it, just realize that in certain circumstances you get that sensation. But like Toss said, if there is a big change in it, where you're feeling something you're not accustomed to, or it becomes unbearably painful or something, then be sure to see the doctor. But a lot of that sort of thing we basically learn to live with for a time.

Thank you all for the replies, I feel like I get way more info and support here than I do at my GP's office as they just don't seem to know a hell of a lot about PE recovery.

Shilos.....Yes, my sister has suffered a miscarriage and my Mum has had 4. I am not planning on any more children as we had planned this to be our last anyway but are most definite on that issue now as the thought of injecting clexane every day is not something I want to have to do as those little buggers sting!! Interestingly (although maybe not related and possibly TMI) my sister and I also suffered clotting at the beginning of our pregnancies and had to be scanned a few times to check on the baby before the end of the first trimester. Mine settled after that but my sister did have problems til about half way through her pregnancy (which was successful) which was around the time she started clexane injections.

I have probably been overdoing the shopping recently as with Christmas coming up and 3 children to see to, it's been really busy and a lot of running around. I'm also finding it really hard to lose weight and I think that's not helping with the tiredness I'm still suffering (although the baby might have something to do with that too). I was actually 12lbs lighter before I started the Rivaroxaban which is a shame but hopefully it comes off again when I stop taking them at the end of the 6 months.