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 Everyone, I am a 36 year old female. I had my first PE in Jan 2017, went on xerelto and had a second PE in March 2017. Meaning Xerelto failed. I am now on Warfarin the super nova rat poison, as the doctors like to call it. And I hate it. Currently I am considered nonprovoked, as there has been nothing to create this situation. All tests have come back negative, and they have run them all. Seriously considering heading the way of the Mayo clinic to find answers. I have a lot of ongoing pain, that I can deal with but have no idea when to run to the ER. The anxiety has gotten out of control, to the poit that most days I honestly do not know if I am having sudden shortness of breath or if I am having an anxiety attack. The doctors at this point seem to have given up on identifying the cause, and have written off my anxiety as an over reaction. To add to this, in November of 2016 I was admitted to the hospital with stroke like symtoms, and bed ridden for 8 days. This also was never diagnosed, and has been forgotten about. When I bring this up as a potential issue the doctors shrug it off as something not to worry about. Today I was told that I will stay on the warfarin, possibly for the rest of my life, and that it is normal to never find a cause, and that i should "live my life to the fullest." I feel as if I was just given my death sentence.
-
Look at what my best friend did with my picture!
-
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.
My history is pretty similar - I've had repeat PEs and been relegated to the permanent warfarin anticoagulation bucket. They didn't do a lot of testing on possible causes, after discussing it with the hematologist it wouldn't change the way they treat me anyway, and the research I did indicated it was more likely to be a novel genetic mutation that couldn't be identified by testing than to be a known cause. There is a very strong history of PEs in my family though so there is that as an explanation.
It is very, very common for people to struggle with anxiety after a PE. Not knowing why and fearing a repetition can be tough. Many people on these boards have found relief and coping techniques from therapy and I would strongly encourage you to see one to help you cope with the anxiety. Many people on these boards have also had success with learning meditation and relaxation techniques to cope with the anxiety.
Mentally some outlooks help me understand and live with the risk. I think of my warfarin not as a risk but as an insurance blanket keeping me safe from another repeat PE. I also remind myself that since my body has already survived multiple PEs, surviving another one will be no big deal if it happens. In your position as well with the worry about what happened in November I would also remind myself that the vast majority of strokes, if that's what it was, are caused by clots, so the anticoagulants will help protect against that too.
Physically, it was really tough to know when to go to emergency/doctor since my symptoms didn't seem to relate very closely to how bad I was feeling. I ordered a pulse oximeter online to monitor my blood oxygen levels and that at least gave me the comfort that I wasn't killing off my organs with lack of oxygen when I was feeling like crap and generally short of breath. I did have a lot of shortness of breath. It still continues some now a couple years later, but it has definitely gotten better. Pain is very very common too, especially in the first few months. For myself I have set the guidelines that I will go to the ER if my oxygen saturation (measured by the pulse oximeter) falls below 90% or if I have symptoms similar to what I had during my previous PE.
Hopefully it will get easier for you with a good sleep and some time to get used to the idea of what the doctor shared with you today.
Get help for the anxiety. There is no reason to not address that part of your health and well being as you would address your physical health. Anxiety is something most of us can relate to here; it to me was harder to cope with than not knowing why I clotted a second time or why I clotted at all.
I don't know that Mayo is the answer. I would work with a reputable hematologist if you aren't already. But honestly, sometimes there is just not an answer.
Lot of us have clotted with no known cause. It's unsettling but actually not that unique. Once I realized that whether or not I have a definitive reason for clotting does not actually change anything, I was able to kind of emotionally move on. You will get there. But for real, address the anxiety. See a therapist if needed. I did and it was a game changer for me.
Thank you for your feedback and help. Therapy is on the to do list coming up quick.
Keep in mind that warfarin is a workhorse medicine that has been used by literally millions of people for decades. The INR monitoring prevents it from getting into 'poison' zone by making sure you're getting the right amount for your body. Almost anything is poisonous if taken in large enough amounts - people have died from water poisoning by drinking too much water! Personally I like being on a medicine (warfarin) that they 1) know how to test for effectiveness, and 2) have a reversal agent for in case I get into an accident or something.
If it's any comfort to you I just had some massive palpitations a moment ago but they seem to have subsided now. Now I need to decide if I get to have coffee or if I should skip it. :)
I'm also, a warfarin lifer. I've been on it for 3 years now with no problems. The thing about warfarin and diet is being somewhat consistent. I'm a near vegetarian. I eat meat a couple of times a month. I eat lots of veggies. I have a salad most days, and makes lots of different veggie slaws. I do watch the heavy hitters , kale, turnip greens,etc, but I do eat the, just in smaller amounts. I also have an occasional drink or two. But of course, if your doc says no to drinking, don't do it.
The other thing i find helpful is that I get my INR done at an anticoagulation clinic. It's run by specially trained pharmacists, so it's handy to have someone to ask questions during the brief apt.
Hang in there. You've been through a lot,but there is more good stuff in the future. I mean there is sort of a mourning period, where mental adjustments take place, but all in all, I'm pretty happy with my life.
Having a PE is traumatic. Having a second clotting event completely messes with your head. But with time, you will not feel so afraid. I've been in this group since 2007 and almost all of our stories have certain similarities, most notably dealing with the worry and the anxiety. It's a common thread for sure. So really, make it a priority to work through that. It will help ground you which will make it easy to deal with having such a traumatic event.
I've been feeling so much better after multiple PE's in both lungs just early this month. Then yesterday and today feeling like crap. Usually I feel better after taking my xerelto but not the last 2 days. Feeling heaviness in my chest like I need to cough something out but cant.
I like the suggestion of purchasing and SPO2 monitor. I think I will do that today. Being a nurse myself doesn't make it easier to know when and what is a real issue and I need to go into emergency.
My advice is to go see a reputable hematologist and push him/her to do a full panel work up. When I was in the hospital following the clots in both lungs, they drew 6 tubes of blood and ran a "general" panel to check for common clotting disorders. Those tests had negative results. Luckily, my family doctor insisted that I see a hematologist, and she ran "every" test possible...taking 10 tubes of blood. That is how she found that I DO, in fact, have a genetic blood clotting disorder called Plasminogen Activator Inhibitor Type I, 4G/5G (along with the not-as-concerning MTHFR). This makes sense because my grandmother had multiple episodes of emboli, as well as heart attacks and miscarriages (all of which are caused by this disorder). As it is genetic, many of my family members then got tested and learned they, too, have the disorder. My daughter just got her positive test results as well. I am now on Eliquis and will remain on it for life. Other family members only need to take an aspirin each day unless they have surgery, etc then they will take blood thinner as well. I know that some doctors indicate that they would treat you the same regardless of whether you have a disorder (they might just keep you on the blood thinner regardless)...BUT some disorder do have other effects. If I had known that I had this disorder, I might have avoided having the miscarriages that I had because my disorder causes problems with the implantation. I was lucky to have one child, but I did go into pre-term labor 8 weeks early. At the time, we didn't know why this happened...but now we do. And now my sister and my daughter both know that when they want to get pregnant that they will need to go on blood thinner and will need to go to a high risk pregnancy doctor.
My other advice is to continue reaching out. I had my PE's almost two years ago, and I still really struggle. I have a chronic cough that causes a lot of tightness and pain. Doctors do not have a lot of answers for this. Basically, anything that "irritated" my lungs before "irritate" them about 1,000 times more now. So colds, drainage, allergies, humidity, large meals - pretty much anything and everything. I had a period of about two or three months when I thought I was seeing the light at the end of the tunnel...but now I have spent the last 6-8 weeks coughing on a daily basis. For some reason, right after lunch it seems to be the worse (I wonder if my full stomach is pushing on my lungs?) Sometimes I cough so hard that I literally pee a little bit in my pants (which adds to this whole crappy situation!) Doctors just tell me that I probably have some scar tissue and some extra sensitivity in my lungs that I might always struggle against. I, like so many on this blog, just try to focus on how lucky I am to be alive...and try to remember that I might now ever be the way I was before this happened.
Keep smiling!