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.
Quick history recap: massive PE July 2014 at age 31, no known clotting factors but had severe stomach bug and a 5 hour car ride in the days preceding the clot. Hematologist put me on xarelto and planned to keep me on it indefinitely because he's not comfortable with the size of the clot I had (15mmx19mm) with such minor precipitating events.
Since then, I've had massively awful periods with bleeding so bad that I can't really leave the house for 1-3 days each month. This past month I freaked my husband out because he happened to be in the room when I got out of bed and the blood overflowed my pad and spilled down my leg, soaking my pj pants and socks and leaving a little puddle of blood on the floor. It's like this every month, I call it a crime scene when I have my period because I literally cannot go anywhere without leaving blood behind. I've become anemic and have been on iron supplements for over a year now. The iron, of course, has unpleasant side effects that I have to deal with because as long as I'm bleeding like this I need the supplementation. Hema has given me no good answers and I just have to deal with this.
Now after having 3 colds in 3 months, I got a massive bloody nose this week. It terrified me to have that much blood coming out of my nose so I went to the ER. After an hour of very firm pressure, the bleeding stopped and I went home and was told to follow up with hema. Hema was not concerned, they expect bleeding while I'm on xarelto. Two days later, I'm with my 5-year-old, picking up my bike from the bike shop when I sniff (totally normal as my nose has been running almost constantly for 3 months now) then the blood starts gushing again. I'm stuck in the parking lot for 15 mins clamping my nose with my son in his car seat trying to figure out what the hell I'm going to do. I called my hema and spoke with the physician's assistant who told me to clamp HARD for 30 more mins and then head to ER if it doesn't stop then. So I make the 25 min drive home with one hand clamped on my nose and one hand on the wheel. Once home, I blow some huge clumps of bloody who-knows-what out and it slows significantly so I figure I can skip the ER this time. All weekend though, I've been able to taste the blood going down the back of my throat and I can see it in the mirror. Nothing is coming out my nostrils anymore but this nearly constant post nasal drip is definitely blood tinged.
Is this kind of bleeding normal? I'm really alarmed at how nonchalant my hema is about this. At the beginning, he said I'd stay on xarelto unless my body didn't tolerate it. Living on the brink of anemia, losing 1-3 days every month to bleeding, and now worrying about gushing from my nose at any moment sure feels like "not tolerating it." The PA told me she understands my concern but they feel like the risk of bleeding is less than the risk of another clot because it was so huge. She said the decision is ultimately mine, of course, but the hema will not recommend me stopping anti-coagulants.
I just don't know what to do. Is this really normal? The standard is to stop the meds a year after a first clot, or even a bit less. I understand he's being very conservative and I do appreciate this, but sitting in a parking lot having my son sit and watch me gush blood from my nose was just a very low point. I have a pre-existing anxiety disorder, which makes this whole thing so much harder. I'm going to be an anxious mess either way, either I worry about all this bleeding or I worry about another clot.
Thanks for listening, I had to get this out to people who can relate!
Since then, I've had massively awful periods with bleeding so bad that I can't really leave the house for 1-3 days each month. This past month I freaked my husband out because he happened to be in the room when I got out of bed and the blood overflowed my pad and spilled down my leg, soaking my pj pants and socks and leaving a little puddle of blood on the floor. It's like this every month, I call it a crime scene when I have my period because I literally cannot go anywhere without leaving blood behind. I've become anemic and have been on iron supplements for over a year now. The iron, of course, has unpleasant side effects that I have to deal with because as long as I'm bleeding like this I need the supplementation. Hema has given me no good answers and I just have to deal with this.
Now after having 3 colds in 3 months, I got a massive bloody nose this week. It terrified me to have that much blood coming out of my nose so I went to the ER. After an hour of very firm pressure, the bleeding stopped and I went home and was told to follow up with hema. Hema was not concerned, they expect bleeding while I'm on xarelto. Two days later, I'm with my 5-year-old, picking up my bike from the bike shop when I sniff (totally normal as my nose has been running almost constantly for 3 months now) then the blood starts gushing again. I'm stuck in the parking lot for 15 mins clamping my nose with my son in his car seat trying to figure out what the hell I'm going to do. I called my hema and spoke with the physician's assistant who told me to clamp HARD for 30 more mins and then head to ER if it doesn't stop then. So I make the 25 min drive home with one hand clamped on my nose and one hand on the wheel. Once home, I blow some huge clumps of bloody who-knows-what out and it slows significantly so I figure I can skip the ER this time. All weekend though, I've been able to taste the blood going down the back of my throat and I can see it in the mirror. Nothing is coming out my nostrils anymore but this nearly constant post nasal drip is definitely blood tinged.
Is this kind of bleeding normal? I'm really alarmed at how nonchalant my hema is about this. At the beginning, he said I'd stay on xarelto unless my body didn't tolerate it. Living on the brink of anemia, losing 1-3 days every month to bleeding, and now worrying about gushing from my nose at any moment sure feels like "not tolerating it." The PA told me she understands my concern but they feel like the risk of bleeding is less than the risk of another clot because it was so huge. She said the decision is ultimately mine, of course, but the hema will not recommend me stopping anti-coagulants.
I just don't know what to do. Is this really normal? The standard is to stop the meds a year after a first clot, or even a bit less. I understand he's being very conservative and I do appreciate this, but sitting in a parking lot having my son sit and watch me gush blood from my nose was just a very low point. I have a pre-existing anxiety disorder, which makes this whole thing so much harder. I'm going to be an anxious mess either way, either I worry about all this bleeding or I worry about another clot.
Thanks for listening, I had to get this out to people who can relate!
-
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.
I have to say that I'm not you, but I'd be seriously annoyed with your hema if I were you. The kind of issues you're dealing with should not be happening and he's blowing off anemia and extensive bleeding like he doesn't care (which I think he doesn't). I've had doctors who just don't seem to register how jacked your life is as a result of following their advice, and it is frustrating as hell. OMG! I just want to smack him across the face on your behalf. IMHO, you need a second opinion and fast.
At this point, there are tons of other anticoagulant options you can choose from, so I can't think of a single reason you should keep putting up with the absolute havoc that Xarelto is wreaking on your body and life. I mean, does he seriously expect you to deal with this kind of stuff for the next 40-50 years??
It sounds like the standard "dose" of Xarelto isn't working very well for you. You should definitely try another option and maybe consider moving to warfarin, where you can actually measure how anticoagulated your blood is. Of course, you can always evaluate whether you want to stay on thinners at all ... but that is a terribly individual choice and you'd want to do your research.
At the minimum, I'd see another hema pronto. Maybe a woman hema if you can find one, who will really understand the issues with your period and anemia. I don't know where you live, but I'd think that you're at the point where you've got to see someone else and get some better guidance. This guy is so glib about this chaos you're enduring that something needs to change. If you have to travel to see a second option, I would do that. What you describe is crazy.
I have to think that there is a happy medium for you. If you can't find one of the newer anticoagulants that works, you might do OK on warfarin. You could keep the dose at the lower end of the "therapeutic" range and maybe you wouldn't have to worry about either bleeding or clotting.
Kick this un-emapthetic SOB to the curb and find someone who will treat YOU instead of just handing down prescriptions and paying no attention to the aftermath.
I'm a lifer on coumadin. Been on it almost two years. I've had one nosebleed and it was under control is just less than 10 minutes. I've had dental work done all without any problems.
I agree that if it were me, I would definitely see another hema. This one's lack of concern is appalling.
I would actually follow up with your PCP if your hematologist is blowing you off.
That or get another opinion as to whether you really need to be on anticoagulants indefinitely. Lot of people have large or massive clots and still only did a limited time on anticoagulants depending on the cause or finding no cause.
Switching to Coumadin was one of the options they gave me actually. In my mind, I just assumed I would have the same problems with any blood thinner so I never really considered it but your comments, Toss, have me seriously thinking about it! Being able to have that control and ability to see that it's working properly, not too much, seems like gold right now. I'm outside of Chicago so we have no shortage of good doctors to choose from. I actually made an apt with my GP tomorrow morning after my second bloody nose on Friday. I'll ask if I can get a referral for a second opinion (I have an HMO so the referral is required) and I wanted to bounce all this off another MD anyway. Also want to double check that I shouldn't be treated for a sinus infection...
It IS chaos in my life right now with this. Before I quit last July to stay home with my son, I missed work each month for my period. The one time I tried to get downtown on one of the "lighter" days, I changed my pad when I got to the train station by my house. By the time I made it to the bathroom in the station downtown (~40 mins later) I had already leaked and stained my pants. I have to plan my life around my periods now. If it comes, I can't participate in whatever is going on. I feel like my son is going to remember me as bed-ridden.
Now these nosebleeds?! I've made sure I have a roll of paper towels in my car if it happens again, the blood just destroys regular tissues. It took over an hour both times to get the bleeding under control. My hema told me it wasn't a "concern" because I didn't need my nose packed at the ER! They expect me to bleed. I'm on blood thinners. So apparently, if I'm upright and/or conscious, it's totally fine.
Do you guys know of anyone who only had one clotting event (only, ha...) with no known risk factors who was put on anti-coagulants for life?
The nosebleeds like that are absolutely not normal for me either. I have had some nosebleeds but they were small normal ones that stop in a few minutes. I was told by the thrombosis clinic that if I couldn't stop a bleed in 20 minutes it would be off to the ER with me.
One not really clot related thing, if there is a single blood vessel causing a problem in your nose sometimes they can cauterize it, might be worth asking your GP about that too.
I've seen some people here put on anticoagulants long term for one clotting event with no known cause but what I've seen more here is staying on it for a 3 months, 6 months or a year, and then you go off.
I get that sometimes it looks like more blood than there actually is, but I find it hard to believe this should be considered normal. I mean, quality of life should also be considered. I think you just have to TELL your hema that you want off and that you want to switch to something else or that you want off all anticoagulants. I would not take medical advice from a PA and would bypass her completely.
I was on warfarin for over 7 years and recently switched to xarelto and I actually do notice I have heavier periods with xarelto myself. But otherwise I've not had any issues. So I think it may be you just don't tolerate it well.
I'm not saying warfarin will solve all your problems because it has its own issues and trials, but it might be something to consider. You may not be able to keep your INR steady enough to really be useful ... or you might be able to. It's hard to say until you make the switch.
I think the only thing to know for sure here is that you need to change something up. You can't continue to live like this, for sure, and your doc needs to understand that.
Just an FYI... but progesterone isn't 100% safe for clotting either. It's less risky than estrogen, but can still be problematic. I got my second DVT six weeks after starting a progesterone-only birth-control pill.
I got a referal from my GP this morning for a new Hema. This one is a woman and has great ratings from patients online who say she spends a greater than average amount of time with them and really tries to understand the situation. Also board certified in hematology (as is my current one). I'm not necessarily looking for a doc who will tell me to stop the meds, but someone who will address my bleeding. It makes sense to try a different one since they do work differently on the clotting mechanisms. I've tried every angle with my current hema and he will not budge - skipping 2 pills during the worst of my period, stopping the meds and taking them only when traveling or having a procedure, reducing the dose. Nothing, it's like he's made his decision on treatment and I have to just suck it up or ignore him altogether because this is what the studies/numbers/stats say.
It's true, it often looks like a lot more blood than it is. During my first Xarelto period, after soaking my sheets in blood (a spot of blood about the size of my hand on my sheets), I called my hema in the middle of the night asking if I should go to the ER. He basically said he couldn't tell me if I was bleeding too much, I had to decide if it was too much. I wasn't experiencing dizziness or anything so it was "fine." It's hard to put it into quantitative terms for sure. All I know is I leave blood everywhere. During the night, every time I move I have to get up and clean up otherwise I'll stain the sheets. Most nights that's 4-6 times. Then in the morning I get into the shower to clean up and when I pull my underwear off, it comes out in a steady stream as if it was a faucet turned on just above dripping for probably 3-5 seconds until slowing. It's any movement at all that causes the gushes. Plus clots, oh the clots. They are so large I can feel them pass through. I've had a full work up with my obgyn, including 2 endometrial biopsies, an ultrasound, and a D&C to make sure there's not something else behind this. It's good (I guess) to know this isn't normal. I have considered adult diapers but I'm willing to bet there will still be leaking points.
Rmb, how are you finding Xarelto? Are you periods anything like mine? It's a little bit of a relief for me to hear you're finding they were better on Warfarin
I'm glad you got a referral for another Hema. In my mind, if xarelto were the only game in town, then sure, maybe it's a matter of just living with it, but you don't have to, since there are other medications. I suspect your current hema is trying to move as many patients to xarelto as he can because then his office doesn't have to deal with warfarin dosing and INRs. It's easier for him if his patients are on xarelto.
What's funny is he has only mentioned possibly switching to Coumadin, no mention of the other newbies.