Do you know who read your CT scan at this other hospital.? Was it a doctor? A radiologist? A tech? Did they have context and know your history and reviewed everything in your records? Are they experienced with blood clot treatments and protocols? I'm sure your family member was trying to be helpful but I sure wouldn't make health decisions for myself solely based on that.

Treatment and protocols can vary by physician, by hospital, even the country you live in. Why not just get a legit second opinion? A hematologist or with doctors who may have some better insight into treatment.? I say internist because I think they have more insight with some serious health issues, more than general practitioners. Just based on my experience. But that way, you can discuss your concerns, share their insights with you and they can make a recommendation collaboratively with you, based on a more one on one discussion and their review your scans, your records, etc.

My PEs were in 2007. I'm 55 years old now. I was on warfarin initially. I had all the genetic testing and they were not able to determine the cause. They thought perhaps birth control pills but not sure. So I was on warfarin for 6 months at my doctors recommendation. A month later, I got another clot, so I was back on anticoagulants, and I saw a hematologist who recommended I take it for life. Still no definitive reasons given. He just said, my body likes to clot. I do have an autoimmune disease and that is known to increase a person's risk for clots, but that's it. Even though I have an autoimmune disease, I'm otherwise healthy: perfect blood pressure, perfect cholesterol, etc. So it wasn't like I had all these health issues when I had my clots I wasn't running marathons or anything like that but I wasn't unhealthy either.

Eventually, I transitioned from warfarin to xarelto. I've been on xarelto for a while now, several years. I've had no adverse side effects, other than the usual bruising.

I know some people have side effects from the newer anticoagulants, stomach upset, muscle pain, back pain, headaches. I think it comes down to weighing the risks and determining if your quality of life is really affected, against the risks of getting another clot. That's why it's important to discuss with a doctor. They can help you with determining that. Once you have a clot, you are at a higher risk for more clots, automatically, regardless of the cause. However, you can try to mitigate those risks by staying hydrated, staying active, not sitting for too long, wearing compression stockings, perhaps aspirin therapy although I'd work with a doctor on whether that's the right call or not)

I do think a lot of times we feel so crappy those first 3-6 months because our bodies are still healing but also, we get de-conditioned after an health event like that so everything feels hard for a while and we get really anxious and tend to be hypervigilant about our bodies, our breathing, every ache and pain etc. I know for the first few months after diagnosis, I was constantly thinking, am I breathing right, which would make me not breath right, or I'd keep checking my heart rate, or think every twinge in my chest or back or shoulder, or leg, was another clot. It's like a mental and emotional assault. I found trying to meditate helpful and I found seeing a therapist briefly really helpful

This is the thing to remember too. Whether to stay on anticoagulants is your decision. What your doctor tells you is just a recommendation. I think too it's really important to address your mental health, because it really is a struggle after diagnosis, and it takes a toll, more than I think we think. I don't think it's unusual to feel happy to be alive but also, I don't know, confused, unsure, not confident, out of sorts. It's really messes with your head.

By the way, once I got to my 6 months in recovery, things started really turning around for me, in terms of feeling physically more normal. For some it takes a little longer depending on the extent of the clots, their overall health, and honestly, the state of mind. I just mention it because you really are only 4 months into this.

Seriously, just get a second opinion. It may help answer a lot of things for you. Or at least give you information so you can make an informed decision about what you do going forward.

Thank you so much for the response. At times this is really a lonely journey. You have this traumatic experience and then they send you home and say "well, we'll see you in a month". I have had the that exact experience where I am worried about every ache and pain. Fortunately my initial issue was not as severe as it seems many other people experienced. So I think that has made it feel like being on thinners for the rest of my life seems like an over reach as well. Although I understand that the next one if there is one could be much more serious. Difficult part is it is tough to tell sometimes if doctors are just worried about covering themselves from a lawsuit so it is safer to just say be on thinners. Seems like it would be difficult for one of them to advise me that being on the thinners is potentially more dangerous all things considered. Every time I have gone off them, I feel so much better though. I lost 12 lbs in about 2 1/2 weeks this last time with a trip to the emergency room for the abdominal bloating and pain and inability to eat much. If this is being caused by these thinners, I can't live this way. Another round of scans and an endoscopy showed nothing yet again. So you have heard of people having abdominal issues? That is a relief because my doctor seemed like she had not heard of this ever being an issue. I feel like such a burden on my family since I am a mental mess at times. I do have an appointment with my first psychologist on Monday to hopefully take some of the stress off of my family. I think I will try your internist suggestion. thank you

Also, by the way, yes the other doctor was a radiologist. My sister in law is an emergency room doctor and had access to a whole team of radiologists. Now apparently there are some limitations looking at a CD versus the actual scan, but he did discuss this with the original radiologist as well who apparently agreed this could have gone either way. Doesn't seem like you can meet with radiologists though?

I think the radiologist interprets the scans but the treating doctor then determines the course of treatment. The treatment isn’t the call of the radiologist. I’ve never met with a radiologist and I’ve had maybe 5-6 CT chest scans over the course of a year. I mean you could ask to meet with the radiologist but the treatment is probably not in their wheelhouse.

I think you could also ask to try a different anticoagulant and see if that helps with your gut issues.

I think sometimes doctors are worried about malpractice but I also don’t think doctors take lightly recommending anticoagulants for life because to your point that’s a risk unto itself. So I think it’s weighing the risk, are you more likely to get another clot than have an internal bleed? Maybe right now yes since your clot was just 4 months ago but maybe less in another 3 months. Or maybe not. That’s why it might be good to get another opinion so you have information in order to decide what is best for you.

I agree with you it really is confusing when you have this critical life event and then once you are stable and treated, it’s like, well you are good to go, see you at your next appointment. But honestly that’s how it is. Hard to feel settled about that. I think also people don’t realize it takes time to recover. More time that you think it should or would.

You are ok though. I know you don’t feel like you are, but you are. Things will get better.

Your comments have been more helpful than u could know. Thank you so much. It helps just to know I am not the only person going through this. I feel like I have this horrible secret. People see me and think I am in good health but I don’t feel that way at all right now, physically or mentally because of this experience. Thank you so much.

You’re welcome. It’s funny. I was in the hospital for 7 days and I got home and my husband literally thought, ok you are good to go. He could not wrap his heard around how tired I was, how out of sorts I was, how scared I was. Our families and friends simply don’t understand how can they, right? I barely understood it. Plus, they are going through it but differently. It really affects everyone.

Hang in there!

"If this is being caused by these thinners, I can't live this way." I think you have your answer there. It is up to you individually but for me I place a very high importance on quality of life and I am comfortable with risk and the idea that something is going to get all of us eventually. I would at the very least ask to switch to warfarin for a while to see if it is the drug you are reacting to or something else. Ultimately it will be your decision to make about which risk to live with, in your situation I would come off the blood thinners in the next couple months and use the strategies rmb mentioned but it is a very personal decision. I am on thinners for life (or as my hematologist prefers to say, indefinitely) but my personal history and my family history is a lot more severe than yours. And I have zero side effects from the medication.

Also, I would try to keep a little journal of what you can do so you can see you are actually making progress. It is so slow that I felt like I was making no progress but people who saw me less often frequently commented on improvements I hadn't noticed.

Hi, Skich. Like you, I'm also new to the PE world. It's about three months after my initial diagnosis and, like you, there were no indicators that I would have this problem.

I don't have the experience (or eloquence) of rmb (who is amazing. your posts are so helpful, rmb. you rock :) ) but I'll offer my two cents. Keep in mind that since I'm so new to this I have no idea what I'm talking about :P

From what I've heard and read there is a high (maybe in the 20% range, not sure) rate of additional pulmonary embolisms in the first seven? months after you have your first one. Even though all the clots are gone from my lungs at this point (found that out yesterday, huzzah!) my hematologist's current plan is to keep me on anticoagulants for a total of seven months just because the statistics show that, in aggregate, it's a healthier option to just stay on them for a bit. You may want to talk to your hematologist/doctor about that.

On the morale front:
'Every doctor I see I get "well your not what I expected".'
I got that too and, although it can seem unfair and it sucks to have spent three months losing all my sweet sweet gainz, another way to think about that is that coming into this problem with a healthy body gave you a much better chance at survival and recovery than other people have. The day I was diagnosed with PE I rode my bicycle to Urgent Care :) . Having a healthy heart and lungs that are able to handle the extra work of dealing with clots is a huge boon. I don't know if that's helpful but it's a way I try to reframe that thinking.

That's it for my opinions. I am interested in what you said about what you think are side-effects of xarelto. I'm also on xarelto and have been experiencing some of those same symptoms. I've been having stomach, maybe also intestinal pain for a few months now and am interested in trying to get to the bottom of it. Do you know if these are common side effects of xarelto? You mentioned that you were on Eliquis at some point, were the symptoms the same? If I can fix this problem just by switching medications that would be amazing.

Anyway, glad to hear that you're far enough out of the woods that you're able to consider getting off the anticoagulants. I hope that whatever choice you make is the best one for you.

Take care!

MMG, thanks for reaching out. It helps so much to at least know other people are dealing with similar issues and being able to work through this together. Despite seeing on multiple blogs and web pages that Xarelto causes abdominal issues for some people, all of the doctors I am dealing with all seem to think my issues are more related to anxiety/stress/depression caused by this whole episode. I guess there is some logic to that, but I have tried Xarelto on 2 separate occasions and each time within a week my stomach and intestines started cramping, bloating and aching. One time it got so bad I could barely eat anything except apple sauce, bananas etc. I have talked to 2 hematologists, my GP and a gastrologist and they all said they have never heard of this being caused by blood thinners. I have had an abdominal scan and an endoscopy and all they have found is that I may have some acid reflux(Gerd).

Unfortunately I am not as eloquent or positive as rmb yet either. Right now I am so frustrated because I keep getting more and more medications it seems every day, each with their own negative side effects. I never had stomach issues, but now am taking medication for that, I am having trouble sleeping which I never had before and I still have chest pains which I never originally had. I just went in for another d-dimer test this morning so we'll see where that goes. But to this point all the scans and tests aren't revealing any causes which is both good and frustrating, if that makes any sense. Oh ya, I have now started talking to a counselor and my GP just put me on an anti-depressant which brings its own side effects.

Fortunately I do have a great support group that is helping me through this. I am trying to be as proactive as I can because I want to get this to a point where it isn't consuming my thoughts so much. But truthfully I am not there yet.

Eliquis didn't seem as bad as Xeralto for me, but I was having similar symptoms, but not as severe. I am considering giving that one more try. Apparently the next option is Coumadin or just going off the thinners all together. Coumadin scares me though because it requires monthly blood tests and has diet restrictions.

Did they ever determine the cause of your PEs? I have seen 2 hematologists and they are telling me since they can't find the cause that I should remain on thinners indefinitely. Your doctor is saying only 7 months? I think I like your doctor better.

HI Skich,

I just wanted to respond to let you know that if you need to switch to Coumadin, it's not really so bad. I'm on it indefinitely because my clots were caused by a genetic thrombophillia. I've been on it for for 6 years so far with no problems. If you have an anit-coagulation clinic near by the blood tests are done by pricking a finger. As far as diet, it's a matter of consistency. I admit, it is a bit of a pain, because it's something to keep in mind. But I eat greens on a regular basis and plenty of other veggies.

I really sympathize with you. Recovering from PEs is tough enough, without all The GI symptoms you're going through.

Take care





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I was on warfarin (coumadin) for many years and it's not that bad once you get used to it. It can cause some GI upset too though, just an FYI. It caused me some upset the first few months I was on it, mostly increased gastritis and acid reflux symptoms. It went away though after a few months.

You really don't have to change your diet when on warfarin. The idea is to be consistent with whatever is your diet. Honestly, if you're struggling emotionally and mentally with the idea of being on medication, I don't think warfarin may be right for you. It must be monitored regularly and it can take a lot of tweaking the dosage for a while to get dial into the right dosage for you. It can be frustrating and anxiety inducing. Sorry, not trying to discourage you but just pointing that out.

I'm on several medications due to having an autoimmune diseases plus being on xarelto. Honestly, I don't think it's a big deal. I mean, why do people feel like taking medications is somehow inherently a negative thing? It doesn't mean you'll be on them forever and if it helps you prevent illness or helps you manage your mental and emotional health, I guess I'd feel grateful there's something that can help me.

I don't think there is any shame in having some emotional fall out from going through something like this. So maybe surrendering to that a bit and addressing it will help get you over the hump and maybe you will actually physically start to feel better. I think we under estimate the body/mind connection quite a bit.

I'm really not that eloquent but if anything I say can help someone based on my experience, I'm happy to do it. We all can be a light for someone!