Hi back at you,

Sorry to hear your pregnancy caused your problems, but happy to hear you have a healthy boy.

I had my DVT and PE over 11 years ago, and can still sympathise with you. Not a single day goes by that I don't think of my experience. You are right that people don't understand. Now,I feel like a cry baby talking about it. Very depressing sometimes.

Mine was a misdiagnosed case also. They told me I had pneumonia, and sent me home with anitibotics. It was actually months before the correct diagnosis was made. I am lucky to be alive.

I have lingering side effects, as well. SOB is my main problem. I have tried everything to build up lung capacity, but nothing seems to help. Stairs really kick my but! After this much time, I son't believe it's going to get any better.

Enough about me. I just want to let you know that a lot of people can, and do sympathise with you. Even with limitations it is better to live and love than the alternative. Be happy, and enjoy your kids. especially that new baby boy! Mine are grown and gone. It really is amazing how fast their childhood years go by! So, enjoy them while you can.

Randy

Hi,

No one can truly understand what they've not experienced. I mean, I don't understand what it's like to be a cancer sufferer because I've never had cancer. And I think we forget sometimes that people have their own issues and problems as well.

I think it's very normal to contemplate your PE experience for quite a while after having it. It's a traumatic, life changing event. But I think as time goes on, it becomes less a focus. It's always there, but the edges soften a bit, if that makes sense. My PE was over 5 years ago. I had collapsed on the sidewalk outside, somehow staggered back home, and my husband called an ambulance. I also collapsed in my living room in front of my husband. So, we literally said our I love yous and our goodbyes before the ambulance arrived, because we both thought I wasn't going to make it. So for me, sometimes, I'll walk past my living room and I'll get a sudden image of that, where I was on my knees between the chair and the ottoman, resting my head on the chair seat as I said good bye to my husband. It's not so much a flashback because it doesn't feel traumatizing. It's just a moment where I go, oh yeah, that happened there. And then it passes and I continue with whatever I'm doing. Doesn't happen all the time, but it is part of my memory bank and as it goes with memories, they get triggered sometimes.

I get wanting to talk about it. Because it's so unbelievable in a way, that talking about it is part of processing it. For me, after a while, when I did feel compelled to bring it up in conversation, I started taking a pause first and considered, ok, am I just turning a conversation with someone into something about me and my PE? If it felt like I was, I stopped myself. Because, I realized I was tending to monopolize every conversation with my PE stuff. I'm not saying your doing that. I'm just saying it's easy to go there all the time, when in fact, you deserve to let a little bit of that go, and redirect your focus on other aspects of your life, a person who happened to have a PE, but who is also a good wife, good mother, good friend etc who has other interesting stuff to talk about., who listens and supports others. So for me, it was a matter of balancing my need to talk about my PE in order to heal, with reminding myself, this isn't all I'm about. It's kind of stepping outside of yourself a bit.

I think if you want another baby, it may be worth getting another opinion on the matter. Yes, it's a risk, and you'd need to be on injections. But women who've clotted have decided to get pregnant and have done so safely. I hope some women here who've done so offer some of their experiences with you. You still have to consider your husband's feelings (who could blame him for feeling that way) but maybe getting some feedback with others hear would open up the discussion with your husband.

Congrats on your baby boy!

I do understand so much of what you're feeling, because I've been through a lot of the same myself. Fortunately for me, my PE's came postpartum, honestly I can't even imagine dealing with them and still having the pregnancy and delivery to get through after!! Although, on the downside for me, I was trying to recover while caring for a newborn and three year old, so at least the good side for you is you probably had plenty of time to be alone and sleep in early recovery. I just remember that's all I wanted after PE - to sleep and sleep, and I never could quite get enough.....

I'm so pleased for you that in the end things worked out well and you had your son, and everything's okay with him. That is definitely a real blessing!!

I had so many doctors overlook my symptoms, although the original PE symptoms were mild and were probably only very small clots, but I started with DVT symptoms which were severe and told over and over and over that nothing was wrong. I was also treated as hysterical and sent home time and again, I think the doctors mostly just believed I was a postpartum emotional mess. Well, I was an emotional mess, but not for being postpartum, but because my blood was clotting up in large parts of my body!

There is so much about the experience that is simply unbelievable. I think even though we went through it we have trouble believing it ourselves, which is part of our emotional need to keep talking about it. Like it'a part of our attempt to try to comprehend it all. And of course, it's unbelievable as well for our family. And I think for some of them, it's actually easier to just put it all out of mind, like my husband really just didn't want to think about it, because it was like if he could avoid thinking about it, it was like it didn't really happen and he didn't need to feel the fear and worry that naturally arises with that. Normally I too distract myself from negative feelings, so I kind of get that, but it makes for a tough situation when one person needs to talk, and the others don't want to. Or they've talked as much as they need to and are ready to move on, but here we are as the patient still kind of stuck and trying to process it all.

I know that I also had to eventually make a conscious effort to stop talking about it. At some point I realized that I was either going to stay stuck in the same place emotionally and annoy everyone in my life in the process, as they get bored hearing about what happened for the thousandth time, or I was going to move on too. But I did still have a need to process it all in my way, so for me, I participated in the group here and talked to other people who were interested sharing experiences. I think journaling could have helped, but I'm not really very good at that. I made a few friends that had experienced PE's also (via this group) and we wrote to each other a lot in the early recovery time especially. And it was very therapeutic to be able to talk to certain people I felt close to about the things I not only had experienced but also was still going through. It was sort of 'journaling' in a way, mostly letting my own feelings out, but it was nice to get feedback from friends who could related and also to hear what they were going through as well and be able to return the same support to them. Doing that allowed me then to start focusing on having more 'positive' conversations with the people in my regular life, my friends and family. Like I said, it did have to be a conscious effort in the beginning, like RMB mentioned as well that she kind of started stopping herself before talking about it. Honestly, that was a HUGE step forward for me and probably helped me to really start healing emotionally after the PE. In a lot of cases I think the emotional healing takes even longer than the physical after this type of experience. And sometimes we need to nudge ourselves forward a bit.

In terms of having another baby, I agree that another medical opinion might be in order. My doctors across the board were pretty much against me having any more, but that was a very hard decision for me and I asked and asked and asked a myriad of doctors about it. And there were differing opinions. My husband actually did want me to have another (again, he likes to ignore things like risk because he believes that if he thinks things will work out that they just automatically will). In the end, I think you just kind of have to gather as much information as you can all around, know what your overall physical condition is as well as what the risks are, know how your husband feels about it, etc. But then I think you have to kind of go very inside yourself and make your own decision. Not a decision that is overly influenced by one thing or another, but just make up your own mind about what you want to do. If you had a pretty normal recovery from the PE and you're feeling reasonably well, I don't really see why you couldn't have another baby. It is true that you're automatically put into a "high risk" category because you need to take the injections, preferably from before the time you want to get pregnant. And your delivery won't be spontaneous because of that, but surely you've already been through that since you delivered under the same situation as before. Honestly it wouldn't really be different than what you already experienced. Lots and lots of women actually deliver in those circumstances, and if you could possibly work with a perinatologist, even better because they have a lot of experience with pregnancies like this. In my case, I ultimately decided not to have another, I've got two boys and that's fine. But I do know of other women who've had PE and gone on to have successful pregnancies after. So the key is just to get educated about your situation, get the opinion of the appropriate doctors and work with them, and make your own decision. I say that because I felt uncomfortable with things while I felt like I was being pushed one way or another by someone else. Once I settled myself on what I wanted, I had peace with the decision. I took everything into consideration, but it was MY choice.

Feel free to ramble here all you want. That's why we're here......

Thanks for all of your replies and insight. I saw my obstetrician last week and we had a good talk about risk if I decide to have another baby. We agreed I would discuss it with the hematologists and get the genetic testing done, and then see where we're at. There are a lot of other factors involved in deciding to have another child, like Shilos Mommy mentioned, but I just want as much info as possible. It's true at some point you just make your decision and have to be ok with it. I already have two beautiful kids, so I'm not sure if I really "need" to have more.

Having a PE while pregnant was no picnic. I also had really bad morning sickness at the same time. But my daughter is older and my husband helps a lot so I was able to recover pretty fast. I was feeling good after about two months. Shilos Mommy: I did want to sleep and sleep those first few weeks. I remember I'd reach my limit at about 4 pm and basically just stay in bed for the rest of the evening. The funny thing is the rest of the pregnancy was great and the delivery was a breeze! Any my baby boy is a joy to be around, he's so sweet. After the birth I had some SOB and it really freaked me out, but I think it had more to do with anxiety than anything else.

I've been hearing so much about clots and PEs these days -- on the radio, in newspapers etc... Mostly it's women talking about getting them from birth control pills and wanting drug companies to warn people more. Also, I came across this article (link below) a while ago. Some of the medical info seems questionable, but it's a compelling read. She's married to a well-known guy in Canada (where I live). http://www.thestar.com/news/gta/2013/01/24/cari_maclean_wife_of_hockey_night_in_canada_sportscaster_lucky_to_survive_as_ultrasound_decision_saves_a_life.html

Thanks again for all your replies. I try not to let the fact I had a PE define me or limit me, but it's always at the back of my mind. Lately I notice that when I'm tired and I take a big deep breath, I get a little pain deep in my lungs. I think maybe it's scar tissue or something left over from one of the clots. It's nothing that gets in the way of my life though. It's almost like a little reminder of what my body went through.