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.
My mom was hospitalized last week with PE. She had large clots in both lungs, thankfully none caused any damage to her heart and they didn't find any in her legs. She stayed in the hospital for probably 2 days at most, that first night in the ICU. They sent her home before she reached therapeutic status with 14 Lovenox shots and prescribed Warfarin. This is all so new to her and me as well. We were told by a nurse practitioner back in 2013 that we have a clotting disorder in our genes. My grandpa is a survivor of two PE episodes and my baby cousin had seizures for years with clots in his head. We've been told we have the disorder by her primary and then one doctor, a pulmonoligist seems to think it was her pelvic surgery she had 3 weeks ago that caused this to happen. So many opinions. We haven't been given a clear plan as to what my mom can eat or what she can take for medicine. She's a sufferer of RA and experiences extreme pain each and every day, so much it probably covered her clots. She usually takes Lyrica and that blocks her pain but she's convinced it might have caused the clots so she's not taking it and now the pain is hitting her full force. She's not experiencing PE symptoms anymore but she's feeling crushed by the arthritis and fibromyalgia plaguing her body. I'm eaten up with anxiety and tears from worry and fear. I really just need some peace of mind knowing she's on the right track and if there's anything she can take while on blood thinners that could help block her pain. Thank you!
-
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.
First, surgery combined with a pre-existing clotting disorder is plenty to cause clots. Lots of people get clots after surgery even without a clotting disorder, so having both is probably the cause of the clotting... so both doctors are right. Although, truthfully, not everyone gets a solid answer for why they clot, so its nice that you have some direction on this. If she was immobile, dehydrated, etc., after the surgery, that probably all had some impact on the clotting as well. For many people, it can be a combination of things, a "perfect storm" that causes the clots. It's hard sometimes to point at one exact cause.
I don't know anything about Lyrica, so it might be worth checking with her rhematologist and a pharmacist about whether it has any effect on the clotting chain or not. I mean, do some good research on this and see if there is a link. It's possible it had something to do with it, but really the surgery and the clotting disorder is plenty by itself. There's no reason to suffer through the pain you're describing because of fear of a medication ... especially if you can figure out whether it does have any sort of effect on clotting or not. I'd look at this ASAP and evaluate.
I will note that she may have some other symptoms come up as a result of the PEs that might seem like part of her other issues. PEs can result in some really crushing fatigue for a while, especially as you're able to get more active. She also could have intermittant shortness of breath and pain ... although, as you say, she might not notice the pain with everything else that is going on.
Even while she's on blood thinners, she can take pain meds, for sure. It would have an effect on the thinners and her dose might have to be adjusted, but it can be done. You need to get in to see a doctor ASAP to get this managed and figured out. She should not have to be in such pain.
Good luck!
When you're on warfarin, the general rule of thumb with diet is just to try to be consistent with what you eat. That's really about it.
Have her make an appointment with her primary doctor right away (probably can get in sooner with her primary vs her rheumatologist) so she can get answers to her questions. She could even call her doc's office and talk to a nurse about it and see if they can ease her mind a bit. Tell your mom that since she's on warfarin and lovenox right now, there's no reason to not take her Lyrica because even in the off chance it did cause her clot, being on anticoagulants would counter act that. There's no reason to feel pain if you don't have to.
And RMB is right... most people tend to eat pretty consistent diets, so if your mom eats about how she always does, her INR ought to stay pretty steady. Even if she loves green veggies, they can just increase her dose a little to balance that. Let them adjust the dose to her lifestyle, not the other way around.
Also, she may need occasional adjustments of her warfarin for as long as she's on it. Again, doesn't mean there's a problem... that's pretty normal for warfarin, which is why they do the blood tests so frequently.
As for meds she can/can't take, just check with a pharmacist. They specialize in drugs, are extremely familiar with interactions with warfarin, and don't have a co-pay. Also, there are 24-hour pharmacies around, so you can always call someone at 2 in the morning, if you need to. I keep the number for a 24-hour Walgreens on my phone at all times.
It can be hard, after a clot diagnosis, to feel like you're getting the proper care. It was an emergency, and there was a hospital stay, and you get meds and get sent home... and that's it? It does seem like there should be more going on, but once you get the meds dialed in, there really isn't anything else. It's waiting and healing at that point.
Hang in there, both of you!