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.
It has been 2 months since I went to the ER for an extreme stabbing pain I was having with ever single breath. We were on vacation in Kona, Hawaii; SCUBA diving, deep sea fishing, touring the island. The last week my symptoms began, slowly. First a shortness of breath while hiking on Mauna Kea, chalked that up to the altitude. Second, an aching in my back, we thought that perhaps I had strained a muscle after a dive, removing my gear. And then the uncontrollable, inconsolable, pain. Never in my life have I ever felt a pain like that before, not even during labor!
I spent 4 LONG days in the ICU at Kona Community. The people there were lovely, I couldn't have asked for better medical care. After the second day I felt 200% percent better, I was up and walking around the hospital, I was laughing again, and eating. It was lonely at night, and I had plenty of time to dwell on the personal and private ramifications of this event. I dreaded the fact that if I had not gone to the ER and had gotten on the plane home the very next day, I would not be here right now and my children would not have their mother.
This is the fact that has hit me the most.
I spend a great deal of time researching pulmonary embolisms, their treatment, and future quality of life prognosis. My physician has not been very helpful. She bridged me from lovenox onto warfarin, but that is about it. She won't order any follow up CT's or an echo, and she won't give me a definitive timeline for how my treatment is going to progress. So, I fired her and have an apt with a new Dr in November, hopefully he will be better. Also have a referral into the pulmonologist to begin treatment with them.
Depression and anxiety have reared their ugly heads. I am told that these are completely normal symptoms, but that fact doesn't make them any better than they feel. I feel like that depression medicine commercial, wearing a paper smiley face in front of my real face. I often tell my SO that I feel like I am uncomfortable in my own skin right now and I don't feel like me. He understands, as much as he can. Thankfully he is a rather patient and caring man, who has dealt with his own demons in life and knows the struggle that depression can be.
So here we are, two months in, and every day feels like day 1.
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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.
The whole PE experience is really tough. It sounds like you're advocating for yourself by getting a new doc, and that's really important.
Have you been given any explanation for your clotting episode? Sometimes they just happen for no apparent reason, but sometimes there are other conditions that contribute. When you see your new doc, ask lots of questions, and express your concerns.
As far as the emotional side. Yep, that was the hardest thing. I felt like I was 90 years old. Taking the garbage would shoot my heart rate sky high. A 15 minute phone call would leave me out of breath. I was someone was used walking all over the place and I could barely walk a block slowly. I even had a few panic attacks from out of no where. When I look back now, 2 years out from the event, I think how the heck did I make it through, but I did. I'm back to walking 5 miles a day, and I feel really good. I just went camping with friends in Colorado. When I first saw a pulmonologist about 6 weeks post clots, my pulmonary artery pressures were just barely in the normal range and he didn't think camping at altitudes about 5000 ft would be advisable. But I've been very fortunate and have made a great recovery. Looking back, the thing I would've done different, is I wish I had talked to my doc about treating the anxiety. I didn't feel anxious, but my body was expressing it. I'd have really bad palpitations ( which were checked out and were considered benign), but they would some times initiate the panic attack symptoms. I'd talk myself through the episodes, but really, it was kind of dumb to tough this stuff out, when my doc would've happily prescribed something for it. It just would've made everything easier.
I guess what I'm trying to convey is that you can get through this. It takes different time frames for different people in different situations. A mild antidepressant helped to get me motivated enough to get out of bed, but the rest came from inside of me. I was tired of letting the PE rule my life.
If you aren't adverse to a mild antidepressant - just temporarily, then bring it up to your physician. It sounds like your significant other "gets it", but in the end - (my opinion only) - the psychological nuance of enduring a PE is something that only a fellow PE survivor can really understand.
Try to focus on people and activities that you love and give you joy. Find an activity to throw yourself into. I hope this helped a bit, and take care!
Can you tell I'm a little annoyed? When am I allowed to start living my life again, and who's going to tell me that? I'm sorry I can't answer your questions, but I can commiserate!
They're pretty sure my clots came from endometrial cancer. The cancer's gone now. So are all my innards -- so I don't know if my moods are depression or my second joyful experience of menopause. I'm lucky enough to have a supportive husband, but he's fearful and hardly wants to leave me alone. We're used to going away on weekends -- he goes golfing with his buddies twice a year, I go visit our kids, or my girlfriends -- but he doesn't feel comfortable leaving me alone. Sheesh, it's been 5 months. Nothing's happened. I'm fine. So yes, I can see how anyone could get depressed about this change in life. Hopefully we'll all get past it and this'll just be another thing we live with.
Also with respect to ordering follow up tests, they're not usually necessary. Most docs won't order them unless you had some kind of complication from your PE, or if it was severe. Also, specialists aren't always necessary either unless you have heart issues from the PE, or ongoing breathing issues. See them if you think it will help you but I think sometimes it just keeps you in the loop of endless appointments and feeling constantly like a sick person. I'd say seeing a hematologist is helpful if they suspect some genetic component to clotting. I found my visits with the hematologist helpful in that mine was very compassionate and caring, even though ultimately, I tested negative for all the genetic tests.
The thing with PEs and DVTs, they are completely anticlimactic once you're diagnosed and on treatment. That's a hard thing to reconcile, how to go from life threatening to no longer in danger in like a matter of a day or two. It's as if your mind has to catch up. Plus, as you do more once you're home, it is taxing so that's why I think there's that window where you almost feel worse a month or so later. That's also why I think anxiety and stress and depression often present themselves after the fact, like weeks to months later. Because when you finally realize none of it makes sense, that you kind of still feel like crap, and so it sort of paralyzes you. To that, I say don't let it. Keep moving forward, inch by inch. I am a big advocate of counseling after a health crisis. It really helped me get my head on straight after my PE.