Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
Hi, my name is Marisa, I'm 27 and I was diagnosed with a PE on Sept 23 this year and it has been the worst time of my life. I was tested for any blood or clotting disorders which all came out negative which lead my doctors to believe the cause was my birth control. I must apologize in advance if this is long for some people to read - but I need to get this out, and I need support. Doing this alone hasn't been easy. I am trying to find hope and peace in all of this craziness.
I had been on Tri Sprintec for 2 years (which I am not longer on any form of birth control since my PE diagnosis) and the last 6 months or so that I was on it I was having problems with my legs and a lot of swelling around my ankles and feet to the point where I was too embarrassed to wear capri's or flip flops in the spring or summer.....they were too puffy, sometimess shoes wouldnt even fit me. It didnt help that I am also overweight and had a very sedentary lifestyle....I had a full time desk job and then after work I would come home and go to school online and sit even more (this was my life for 3 years). Everyone encouraged me to stick it out even though I hated it because I should have been proud of myself for working and going to school full time while living out on my own. I promised myself after I graduated I would focus on my weight and health and that would be my new priority. I graduated in March this year and I immediately starting dieting and watching what I ate and started becoming more active. 3 years of doing nothing much more than sitting changes your body a lot and my muscle strength was no where what it was - so I knew I had to start off slow so I didn't hurt myself.
In the midst of watching what I was eating I also starting watching how much sodium I was putting into my body - I thought this had something to do with my swelling in my feet and ankles and it was suggested that I do this by my family doctor as well.. But no matter how well I thought I did, the swelling didnt stop. I finally went to my GYNO and told her I thought it was side effects from my birth control. I had read a lot about how birth control can cause swelling, anxiety, and palpitations, all of which I was having. I experienced my first few panic attacks literally weeks after I graduated and thought there was something seriously wrong with my heart. 2 cardiologists and many tests later I was told there was absolutely nothing wrong with my heart and my panic and anxiety attacks are probably the cause of all the systems I was having. Anyway, my GYNO agreed and told me she could put me in a different birth control that had lower amounts of estrogen in it and it should help with my swelling and help make me feel better, so I agreed. (BTW I was on birth control one for protection reasons and also because I was diagnosed with PCOS). I started to notice a change in the swelling very quickly after starting the new birth control and was very impressed. Literally one month (my next period) after starting the new birth control, I ended up in the ER at 3am with sever pain on my left side and back and had a very difficult time breathing to find out I had a PE in my left lung............I was SHOCKED. I was worried about clots in my legs from all that swelling, NOT my lung. I had 3 ultra sounds on my legs prior to my PE and they were all negative AND I had an ultra sound on both legs right after my PE diagnosis and was still told there were no clots there.......the ER doctors, my hematologist, and my family doctor have no idea where the clot came from and told me not all PE's have to start somewhere else in the body, and that they can just form in the lung for no other reason. AWESOME.
All my doctors have been trying to reassure me however that Im going to be fine. I need to be on Warfarin for 6 months and after that I should be good to go and live life normally again................so heres my BIG question.....How can I EVER be or feel "normal" again?
Not only has my anxiety been through the roof since this happened but I am also very angry and frustrated. When I was in the ER and when I was admitted for 2 days, the doctors and nurses didnt give me a whole lot of information. They told me my clot was small and because of where it was located, it couldnt move, so essentially, I was safe. They also told me about the medications and gave me instructions for the Lovenox shots and avoiding vitamin K and all that. That was IT. No one talked to me about my recovery...how long it could take...the chances of recurrences......that I will have "good days" and "bad days"..............what this would do to me mentally.........................and how to cope. I have had to do this all on my own and it sucks so bad. I have a fiance and family members who have been so freaked out themselves, they arent helping much, but it seems like they expect me to be back to 100% by now...and I'm not. I'm trying....but I'm not there yet.
I feel like the doctors arent telling me everything either. I feel like they are just telling me things I want to hear because its a "general statement" type of thing. I had to find out on my own that ANYONE who has had a DVT or PE are at higher risk of another one, esp. within the first 10 years..........(yet my Drs are telling me once mine is gone, my chances of another one is the same as someone who has never had one). The FRUSTRATION comes from this....................how or who do you know what to believe? Who do you trust? This is my LIFE we are talking about and I dont want to be treated like a number or a general statistic. It is also very difficult not be afraid of any pain that I feel in my body because my first thought, every single time is, "I hope thats not another clot". The chances of developing another clot while on blood thinners is slim...........however, so where the chances of me getting one in the first place...so yeah, it can happen, and I may be a little paranoid but I'd rather be safe than sorry.
Whats even more frustrating about all this I have talked about so far, is that there is little information about the REAL SURVIVORS out there. I want to know what real people are going through and how they are moving on with their lives. Is it really possible for me to NEVER have to go through this again? Can I really regain my life? Does this happen for a lot of people or do most of us always have to worry about this? As I mentioned before, I am searching for hope and peace of mind. I want to not be afraid of every little thing anymore. And I would LOVE, LOVE, LOVE to talk to REAL people who have gone through this and gain some support from people who truely understand.
I had been on Tri Sprintec for 2 years (which I am not longer on any form of birth control since my PE diagnosis) and the last 6 months or so that I was on it I was having problems with my legs and a lot of swelling around my ankles and feet to the point where I was too embarrassed to wear capri's or flip flops in the spring or summer.....they were too puffy, sometimess shoes wouldnt even fit me. It didnt help that I am also overweight and had a very sedentary lifestyle....I had a full time desk job and then after work I would come home and go to school online and sit even more (this was my life for 3 years). Everyone encouraged me to stick it out even though I hated it because I should have been proud of myself for working and going to school full time while living out on my own. I promised myself after I graduated I would focus on my weight and health and that would be my new priority. I graduated in March this year and I immediately starting dieting and watching what I ate and started becoming more active. 3 years of doing nothing much more than sitting changes your body a lot and my muscle strength was no where what it was - so I knew I had to start off slow so I didn't hurt myself.
In the midst of watching what I was eating I also starting watching how much sodium I was putting into my body - I thought this had something to do with my swelling in my feet and ankles and it was suggested that I do this by my family doctor as well.. But no matter how well I thought I did, the swelling didnt stop. I finally went to my GYNO and told her I thought it was side effects from my birth control. I had read a lot about how birth control can cause swelling, anxiety, and palpitations, all of which I was having. I experienced my first few panic attacks literally weeks after I graduated and thought there was something seriously wrong with my heart. 2 cardiologists and many tests later I was told there was absolutely nothing wrong with my heart and my panic and anxiety attacks are probably the cause of all the systems I was having. Anyway, my GYNO agreed and told me she could put me in a different birth control that had lower amounts of estrogen in it and it should help with my swelling and help make me feel better, so I agreed. (BTW I was on birth control one for protection reasons and also because I was diagnosed with PCOS). I started to notice a change in the swelling very quickly after starting the new birth control and was very impressed. Literally one month (my next period) after starting the new birth control, I ended up in the ER at 3am with sever pain on my left side and back and had a very difficult time breathing to find out I had a PE in my left lung............I was SHOCKED. I was worried about clots in my legs from all that swelling, NOT my lung. I had 3 ultra sounds on my legs prior to my PE and they were all negative AND I had an ultra sound on both legs right after my PE diagnosis and was still told there were no clots there.......the ER doctors, my hematologist, and my family doctor have no idea where the clot came from and told me not all PE's have to start somewhere else in the body, and that they can just form in the lung for no other reason. AWESOME.
All my doctors have been trying to reassure me however that Im going to be fine. I need to be on Warfarin for 6 months and after that I should be good to go and live life normally again................so heres my BIG question.....How can I EVER be or feel "normal" again?
Not only has my anxiety been through the roof since this happened but I am also very angry and frustrated. When I was in the ER and when I was admitted for 2 days, the doctors and nurses didnt give me a whole lot of information. They told me my clot was small and because of where it was located, it couldnt move, so essentially, I was safe. They also told me about the medications and gave me instructions for the Lovenox shots and avoiding vitamin K and all that. That was IT. No one talked to me about my recovery...how long it could take...the chances of recurrences......that I will have "good days" and "bad days"..............what this would do to me mentally.........................and how to cope. I have had to do this all on my own and it sucks so bad. I have a fiance and family members who have been so freaked out themselves, they arent helping much, but it seems like they expect me to be back to 100% by now...and I'm not. I'm trying....but I'm not there yet.
I feel like the doctors arent telling me everything either. I feel like they are just telling me things I want to hear because its a "general statement" type of thing. I had to find out on my own that ANYONE who has had a DVT or PE are at higher risk of another one, esp. within the first 10 years..........(yet my Drs are telling me once mine is gone, my chances of another one is the same as someone who has never had one). The FRUSTRATION comes from this....................how or who do you know what to believe? Who do you trust? This is my LIFE we are talking about and I dont want to be treated like a number or a general statistic. It is also very difficult not be afraid of any pain that I feel in my body because my first thought, every single time is, "I hope thats not another clot". The chances of developing another clot while on blood thinners is slim...........however, so where the chances of me getting one in the first place...so yeah, it can happen, and I may be a little paranoid but I'd rather be safe than sorry.
Whats even more frustrating about all this I have talked about so far, is that there is little information about the REAL SURVIVORS out there. I want to know what real people are going through and how they are moving on with their lives. Is it really possible for me to NEVER have to go through this again? Can I really regain my life? Does this happen for a lot of people or do most of us always have to worry about this? As I mentioned before, I am searching for hope and peace of mind. I want to not be afraid of every little thing anymore. And I would LOVE, LOVE, LOVE to talk to REAL people who have gone through this and gain some support from people who truely understand.
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Ok first things first. You've been through something that is very scary and very emotional, but you also need to take a deep breath and just try to relax a bit.
Your doctors' focus had been on diagnosis and treatment. Recovery is a completely different thing and it's different for everyone. So sometimes doctors aren't going to know all the nuances of recovery because everyone's different and really, the doctors who treat us in the hospital don't know a lot about recovery because they usually never see the patient again once released from the hospital.
I think there's little information on the survivors because surviving is quiet anticlimactic actually. It should seem like a bigger deal right? But the dramatic part, from a medical point of view, is diagnosis and treatment. Once you're treated and you're out of immediate danger, you're technically a survivor and so it's your job to go on living after that.
You will feel normal again but it just takes time. Right now, it's hard to believe that. Yes, some studies show that people who have clotted once have an increased chance for clotting again, but if they attribute your clots to birth control and you eliminate that risk factor going forward, then chances are you won't clot again. I would say if you don't want to be treated as a number or statistic, then don't treat yourself that way either, by seeing yourself in the negative studies. Because you're right; you're not merely data. You're a real person. There are always going to be one-offs with any medical issues, right? But most people don't have recurring clots unless they have risk factors associated with clotting. That's how you have to look at things, from a majority stand point vs the minority standpoint. I mean, I had massive clots in both lungs, nearly died and was in the ICU and cardiac unit for seven days. If I'd have hung my hat on statistics, I would have been dead before being lifted into the ambulance.
I'm not trying to diminish your concerns. I GET the fear for sure. But I also know now, with some distance from my clots and experience, that a lot of my stress and worry was self induced. So I would say, right now, try to just focus a day at a time, on being well and whole. That's all anyone can do. Find distractions, get out, do things with your friends and family, carry on with the normal stuff you did before the clot. Do things you life doing. Distractions are a blessing. Also, I ended up seeing a therapist about a month or so after my clots, because my anxiety was so high. That was the BEST thing I did for myself during my recovery.
No can promise you that you'll never get another clot. Just like no one can promise you that you won't get into a car accident, or get cancer. All you can do, all anyone can do, is try to eliminate the risks for clotting, know the signs and symptoms of clots and make your survival meaningful, whatever that means to you. Sometimes you just have to make a decision to forge ahead despite the fear.
First, it's great that you seem to have a clear cause for your clots. Birth control has been causing clots for 50+ years, so that's a pretty solid cause, especially since you had recently changed pills. It's entirely likely that if you don't take BC or hormones again, you'll never clot again. That's true for many, many people. Having a clear cause (something not all of us have) makes it easier to avoid recurrence.
Also, don't be too hard on the doctors. Many doctors--especially those in the ER--really have no idea what PE recovery is like. Many of them consider it an acute event. You get diagnosed, you get treated, and they send you on your way. They really don't have any idea what happens a month later--or six months later. My best friend's husband is a surgeon and he was completely baffled that I still had issues months after my PEs. From his perspective, once you're being treated the crisis is over. A lot of docs have the same point of view and you'll find wildly varying opinion about how quickly you'll recover. Some think you'll be fine in a week or two... others (generally those with more experience), know it can stretch out quite a while.
Also, yes, once the clot is in your lungs, it really can't go anywhere else. The blood vessels in the lungs get smaller and smaller until they are capillaries, which are so small, only one blood cell at a time can get through. Obviously, a blood clot can't get through that, so they really don't move anywhere else once they're caught in your lungs.
It is possible that your clot was in your leg and just broke off completely and traveled to your lung, which is why they aren't seeing anything on scans. It could have also formed in your pelvis or arm.
Also, you're not even two months into your recovery. I was feeling a lot better by two months, but not as good as I felt at six months or at a year. I still had bad days when I pushed myself too hard and was walloped with increasing pain, SOB (shortness of breath), and exhaustion. I had bouts of symptoms like that up until about 11 months out, although usually after being out in hot/humid/cold weather or just pushing myself too much. The bouts got less severe and less frequent over time...and they will for you too.
And, consider tackling your anxiety head on. The anxiety is well founded, but it can seriously take over your entire life if you let it. Consider medication, counseling, meditation, journaling, or whatever it takes to get you through it. I did both meds and saw a therapist for a while after my PEs and it helped a lot with my coping. All that energy you're using on stress? It'd be better to use it on healing, if you can.
And yeah, it does get better. You won't think about this all the time in a few years and your life will get back toward normal. Most people don't re-clot, especially if they have a clear avoidable cause.
I want to mention that there are a lot of repeat clotters on these boards, but we're sort of the exceptions to the rule. We hang out here because we're the weird ones ... most people who only clot once aren't here for much longer than their treatment takes. Hopefully, that'll be the same for you. Hang in there!
You are all also absolutely right about distractions...they have been a life saver for me. I have been spending almost all of my free time either with family, friends, or some sort of hobby like painting. It definitely helps. But there are times ...especially when I am home alone...that I may feel some pain and have a panic attack and then my mental state totally goes down hill....so I have come to hate being a lone...which is the total opposite of how I used to be.
But yes, day by day and focusing on being well is the best thing I can do.
Thank you all again for your support and advice, it is so welcomed and appreciated. I hope you all continue to do well and feel stronger with each day.
God Bless
One thing is for sure is that physical pain and anxiety can be very intertwined. I remember any little pain would send me into panic which seemed to increase the pain. Conversley, if I felt a lot of anxiety, suddenly my chest would start hurting which would make me feel more anxious. So it was the constant cycle of pain, anxiety, pain, anxiety. It's emotionally and physically draining. I started doing something called a body scan meditation and that really helped me sort of dial down the intensity of the anxiety and help me sort out what is causing what. If you google body scan meditation there's a bunch of articles on it with instructions. It's not hard and for me, it was just a good way to redirect my thoughts.
You sound solid. Trust that you are!
It was truly startling leaving without a greater understanding of what to expect. I think most doctors don't really know, to be honest. It seems like once the clot is treated, it should be just back to normal but the body takes time to heal from such a traumatic event. It took me 7 months until I felt normal again and I never even had a drop in my pulse ox levels (although I did have a huge clot). Did you have an echo of your heart? With such a small clot, I would guess you got away without any heart enlargement but know that's a possibility if they did not check at the hospital. At my 1 year follow up, I found out my heart was still ever-so-slightly enlarged on one side and although I have no symptoms of it, it can cause problems with some.
I guess just give yourself time to work through this. It's a HARD process, especially with anxiety against you to start with. But you'll find some incredible insight here so hang out and ask questions!
JuliesLife - Your story sounds scary too. How are you feelilng now? Are you still on treatment for your PE or are you off the blood thinners? Your husband sounds pretty much like my fiance did, and still does from time to time - my mom and my sister were giving me a hard time too in the beginning - they just expected me to "buck up" and go back to my normal activities. It took a nurse to tell they to chill out and that everything I was experiencing was real before they could apologize and be more understanding. But not everyone knows how to handle these sorts of things, if your not going through it yourself, its hard to relate.
But to answer your question, no, I have no had an echo of my heart since my PE. I have had several before it when I thought my panic attacks were something else.....but I have had several EKG's and they always come out normal. I actually read something that said that sometimes depending on the size and location of the clot it can affect your heart...................I have thought about asking my dr for an echo just to make sure........so now that you mentioned it I am thinking that may be a good idea. Honestly, my heart seems/feels fine........but its always good to play it safe.
I want to comment on the heart thing. You could ask your doc if it's necessary to have an echo, but it is true that the risk for heart issues from a PE is usually when the PE is large or complicated, so I don't think doing an echo is warranted in all cases when you have a small PE. I had heart damage from my PEs (it's not something I even noticed) and it resolved over time. Most heart damage does improve as clots resolve. So don't feel that your doc did wrong by you if an echo wasn't done or if he doesn't think you need one. It truly may not be medically necessary in accordance with the clinical rational used in testing protocol.
Ill let you know how I make out with the meditation though :)
My docs have been running a zillion tests, and all have come back negative or only the tiniest bit outside the norm. They've exhausted all of the A and B list diagnoses they can test for while I'm on blood thinners, so now 6 months later, I'm finally been taken off anti-coags for a month so they can test for other things. I find comfort in the fact that my doctor isn't willing to let a diagnosis pass us by, especially since I'm so young.
Two months into my recovery, I was still in a lot of pain and not breathing or sleeping normally. I lived in fear of sneezing or yawning too big lol, and it felt like I would never get back to normal. Now, six months in, I still nap like an nonagenarian if I'm allowed, and I have to be careful not to overexert myself or I'll be REALLY useless the next day, but things are pretty a'okay. I think the trickiest thing has been dealing with INRs and regulating my vitamin K intake.
If you'd like to chat, I'm happy to exchange numbers or messenger info (I actually just figured out where the message box on here is). I don't know about you, but I had/have a hard time talking to my family about my health since I know it's so distressing for them to hear about. Since I used to work in healthcare, I've been fortunate to have a few nurse friends who can commiserate with me and not be scared.