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.
For those that haven't seen my earlier posts, I am a mom of a 17 year old daughter who was a healthy, athletic softball pitcher with a full scholarship offer to play in college. Following a week long national tournament in August 2015 where she pitched a 7 inning game 5 days in a row, we drove 7 hours home and that evening she suffered a bi-lateral pulmonary embolism with a left lung infarct. She went from healthy and active one day to deathly sick. This was three months ago. It has been a long journey back for her. We just completed a complete retesting for anything genetic or autoimmune. Everything came back clear. While researching, we found a case study regarding a baseball pitcher who suffered from effort thrombosis. This is the impingement/pinching/narrowing of the subclavian vein located between your collar bone and your first rib. With repetitive motion for some people (based on their skeletal structure) this vein becomes traumatized when it is repetitively pinched by the first rib and clots can form. We asked our hematologist about this as a possible cause for my daughter's PE's and they discounted it because they said for my daughter that would have only resulted in a PE in one side of her lungs from her pitching shoulder- not PEs in both lungs like she had. At the next follow up, her hematologist said they had changed their minds and thought it would be good for my daughter to have a MRV - a "MRI" of the vascular system in her upper torso. What that test showed was that she had effort thrombosis not only in her pitching shoulder but also in her non-pitching shoulder as well. We feel we have our answer regarding where her PE originated. Unfortunately, we believe we are left with two options for her. Surgery to remove her first rib on both sides or. she stays on thinners for life. This is not a decision regarding whether she plays softball but instead is a decision regarding her health for the rest of her life. Im afraid her softball career may be over. Anyone else have similar situation or story? Any comments regarding the decision of surgery vs. thinners for life? Neither options sound good to us at the moment. I would also appreciate to hear from anyone who has had their first rib removed? I have to say, I feel this is something that could have been a storyline for Dr. House, MD.
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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.
Here's a link to Clot Connect which has really good information in general about blood clots, for both patients and providers. You may find some good information here and resources:
http://patientblog.clotconnect.org/2011/03/02/athletes-and-blood-clots/
You could get a second opinion on treatment, just to see what another doctor would recommend (surgery, life long anticoagulants or both). I do think being she's so young, long term anticoagulants doesn't seem that appealing to me. But I think it becomes a matter of looking into what is the greater risk, being on anticoagulants long term, or the surgery, and if she has surgery, the odds of her avoiding clots in the future.
I am glad your hema reconsidered his initial thoughts on the cause. Sometimes just knowing the cause is a great relief in itself.
Still, yes, what a difficult decision. I'm with @rmb that lifelong anticoagulation at this point seems less than ideal... but surgery is never something to take lightly either. I might try to figure out if there are any specialists that deal with this time of thrombosis and see if you can consult with them. A second opinion might help swing your opinion one way or the other.
To be totally up front, I don't know anything about the type of surgery she might be having. There is risk, of course, with any surgical procedure, so no, of course you want to weigh carefully what the possible risks are with that, and you can talk about those specifics with your daughter's doctors.
The thing I do know something about is long-term anticoagulation, though, so I do want to comment on that, just to give you some specifics to think about. I tend to feel that unless the surgery is surprisingly risky for some reason, that's probably what I would opt for in a similar situation. I've been on anticoagulation for the better part of seven years now (early 30's when I started it), and if it were possible for me to have a surgery and not need it, I would absolutely do it.
Is it possible to have a good life while still on anticoagulation? Yes, absolutely, if it's necessary. But for someone who can avoid it, I'd say all the better, especially when we're talking a girl as young as your daughter. Long term anticoagulation will complicate things besides just her athletic career; for instance, she'll need to be careful not to become anemic - women of menstruating age are especially vulnerable to that when on anticoagulants because it often causes increased monthly bleeding (which in itself is unpleasant). I've struggled with anemia and for awhile had a potentially dangerous situation because of it, not to mention I just felt terrible the whole time. My hematologist says he recommends that young women on permanent anticoagulation take regular iron supplements. Personally I've done okay on that, and I'm not having problems with anemia anymore, but many people feel sick from the supplements.
Another thing to consider for her is that if she should ever decide to have children, the pregnancy will be more complicated and costly due to the anticoagulation. She'd have to do shots throughout pregnancy, it makes it a higher-risk pregnancy, and delivery has to be pretty much scheduled out rather than having it come naturally. Children may be the last thing in the world on her mind at this point in time, but she's so young, she could change her mind at some point later, and that's why I bring it up, because maybe it's something you wouldn't think of because it's not an immediate situation.
I'm glad that your focus is just on her health and well-being and you're not just thinking of saving her athletic career, but even if she ends up giving that up, she's obviously someone who enjoys sports. I'm all for people continuing to do the things they love even when they're on anticoagulation, but at her age especially, when she has so many years ahead of her for fun and sports and injury, anticoagulants will probably be a pain at least and dangerous at worst. I'm not in a situation where I can do much in the way of sports any more, but I miss them terribly. And even without doing anything really pushing myself, I still fall sometimes and stupid things turn into a bigger issue because of anticoagulants. I turned my ankle walking in the park last autumn, and I ended up having to completely stay off my feet for several weeks, because while the bleeding wasn't ever dangerous, I had bleeding in my ankle and foot that just started back again every time I walked even from one room to another in my house. My foot was almost entirely black from the internal bleeding in it, and I was absolutely bored out of my mind, because I felt well but was stuck off my feet.
I absolutely have no choice but to be on anticoagulants, and that's fine - I need it because it's clear my blood will clot anywhere and everywhere in my body if I don't take the medication. And I feel like I have a good life despite that, and when stupid things like twisting my ankle happen, then I just deal with it. But if I had the option to *not* need anticoagulation, I'd take it. I mean, none of these issues is insurmountable, but it's just annoying to deal with them all.
That's just me and my perspective, though. Get as much information as you can from all of her doctors involved to understand as well as possible all of the repercussions and risks involved each way.
I wish you both well, and hope everything works out in a way for her to be happy with the decisions.