Welcome to the group. I am sorry to hear what you are going through. Please know that you can go on here and stress your feelings that’s what we are all here for to help each other through this trying times. Medical conditions are life changing events and it can be very scary but don’t give up, fight. I can’t say that I know everything you are feeling as everyone emotion are different but please let it out scream cry but don’t ever give up. Find that one person that you can scream, cry and they will do it with you. Just don’t ever give up as you have been given another chance at life so don’t be scared embrace it. I am thankful for this second chance at life and I will make the best of it and I will throw my fear away. As like you in the beginning I was scared and depressed but God and my faith has help me through it all. I wish you all the best and know that I am here if you want to keep on writing to me. God bless and I pray you get better soon.

So sorry to hear about your experience. It is very traumatic and even worse when you feel alone.
My PE was Oct 5 this year. Many complications later I can tell you there will be good days where you do feel normal then out of the blue days where you feel so tired and unable to do more. I too also had an elevated heart and blood pressure that would go up and down. It still does, just tonight I felt like I was out of breath while sitting in a car. One month later I still can’t climb upstairs carrying a load of laundry. It will take time, just pace yourself and listen to your body. I don’t think your alone many others struggle and it can feel like no one understands because you look fine. It takes time to heal and your heart also was stressed with the PE.
Coughing up blood is concerning. I did cough up mucus after my PE and had a bit of an infection but it didn’t last long and there wasn’t any blood in the mucus. Make sure you see a Dr if it continues and explain your anxiety that you are experiencing. Sometimes a Drs beside manner can be off in reassuring patients because they forget to put themselves at a patient level.

Thank you for the kind words.

I probably would be dealing with this a lot better if I hadn't gone through a decade of hell. I finally saw the light at the end of the tunnel and was fine for a year, then boom back at rock bottom again.

I don't like to talk to people around me as they have their own lives to deal with and don't want to be a burden.

I know it's sounds selfish and not very positive, but I'm at the point where if I could just press a button which turned me off I would. I just feel so mentally drained, tired, angry and upset 24/7. I've had 13 years of hell and being diagnosed with this on top of it all is the final straw. I know there are people a lot worse off than myself, but I can't help how I feel. Again sorry to have a ramble, but this has helped a tiny bit.

I'm very concerned for you. Please see your doc or get a referral to another that will understand the mental anguish you're experiencing and will find a way to help you with medication and/or counseling.

As far as the heart symptoms, it's not uncommon post pe for people to experience high heart rates or even heart rhythm irregularities. I had both. They subsided over time. I also tend to be anxious, and had my first full blown panic attack during recovery. Looking back, three years later, I really wish I had addressed the anxiety with my doc instead of toughing it out. and even though I live alone, I didn't feel isolated. I had friends that would call and check up on me. Even though your friends have their own lives, you've had a traumatic experience. Please reach out to them.

dear dear please keep calm. this is the first thing. I am doing EXACTLY as you are. i'm sarah from iran and 35 years old. dear please know that added up to your problems -which we are sharing!- i am also a fired former phd candidate from an iranian university -they fired me- and i am also a woman whose teeth have been damaged by a dentist -many years ago- while he was not an expert in orthodontics but practiced that on me! I have also been since childhood experiencing depersonalization -which is causd by stress and anxiety- and is similar to that part of your speech "as if i'm looking from someone else's eyes"... this is caused ONLY by stress and anxiety because it leads to some brain regions work more BUT the good news is it is NOT a disorder. we call it a disorder because the average have mastered to forget such thoughts and have pushed it back to subconsciousness. now we get in your problem. dear you have two prblems that we are also sharing: 1- being on xarelto due to the risks by the clots. WHY WOULD YOU want to know what the cause is???? huh? we are on xarelto. we have had the chance to be on this medical pill in order to avoid further clots and the current clots will go away if you visit your doctor regularly and do AS INSTRUCTED. does it cause any further anxiety? if it does, it's normal. ok? as you are reading this text, since you are suffering from depression and anxiety you will more or less feel VERY ANXIOUS and even some OCD -obsessive compulsive disorder- might come to happen besides all those panic attacks. you should take medication a i do -and i have done in the past- for depression and anxiety. you should go to a good psychiatrist and tell him/ her that you want the best medication with the least addiction possibility and the least side effects. for example, benzodiazepines is something we should not take because tapering them after some time is so HARD and i have just experienced all these difficulties. and i know that you have lost your trust in these doctors. me too. both in psychiatrists and dentists and also in other ones. ok? i just know very very few of them who are conscientious. dear, please listen to me. i know how much stressful it might be for you when i say you should ask help from a psychiatrist because you have lost the trust. me too. but b brave. do you know hat we are borne in this world only for dealing with a qualifying scourging marathon? this is not thefinal world. this is only a qualifying exam which is SO PAINFUL. YOU ARE NOT ALONE in being damaged by doctors although this damage could also heal. you won't believe this. I KNOW. I know how you are feeling now. you won't believe it. the next world -at least let me as a fool to believe in it, ok?- will be a very very serene and calm 'system' BUT this happens for thoe who fight enough. I know there are lots of ppl who are experiencing easier lives. I know. I know. You just think about your own case. let us think about our own issues instead of why those ppl are living way better or why some others are living EVEN WORSE! I cry a lot. I pray to God. panic attacks are so severe that decrease the power to even pray to God! oh right now my neck made that chronic cracking sound again i had forgotten to tell you that few days ago something new happened i realized to have c4/5 cervical disk protrusion by an MRI i had done 3 months ago. i am so deficient of vitamin D as well. please check it too next time you do a blood work. write it down RIGHT NOW in case you might forget it (vit. D to be checked). now I am going to read your initial text again.

... me again. okay the first paragraph of your initial text "I'm 33 and was diagnosed back in July with multiple PEs in both lungs and have a lower right infarction as well. I've been put on 20mg of Rivaroxiban and 10mg of omeprazole. Doctors have no idea whats caused them.". it is curable it is being treated. PLEASE KEEP ON HAVING YOUR XARELTO. OK? xarelto is the oter name for Rivaroxiban as you know. Doctorshave no idea? why would they have an idea? this is being treated and if you keep on having that FOR LIFE it will be in control! just eat it at the same hour everyday as i do and will in the fiture. you are not alone on this. first of all GOD is with you, then God is with you, we are with you, and then God is with you! i have ben such a bad friend of others in the past that sometimes i had this idea like God is not with me! then i realized this is craps. God wis so nice and is with everyone who calls God. but God being with somebody does not mean he or she won't suffer. sheer reverse. the exam will get even harder for some ppl whom are loved by God. back to te text "wheezing sound" is that with light-headedness? are you worried about it? is that causing so much pain? i have also bad breath but it's due to the sinus infection and anxiety and panic attacks. pls tell me more about this problem. because many reasons are behind it. tell me how much severe this problem is. ok? do an echo again. don't do heavy things. how many stair you should possibly go up and with what speed (slow/ moderate/ fast) that the heart will begi to go crazy? do you sweat too? cold sweat? how much exercise did you do before? this is an irrelevant question but i'd like to know pls. you had that seroxat effect because you did a cold-turkey (as opposed to gradual slow tapering)? did you quit having the pill all at once? this is also an irrelevant question but i'd like to know again. you are crying because you need a mild anti-depressant and anti-anxiety and probably a pill against obsessive thoughts which freak you out. isn't that all these thoughts come over you and begin to turn into a hurricane which you can't stop? isn't that you wish you were a robot and could very easily turn yo off by a button pressed? isn't it you don't talk to others and don't deal with them and even IF YOU DO the whole time something within you is anxious when the next panick attack or fear and anxiety will happen again? DEAR your heart-related issues -from infarction to embolism- are in control. do another echo and tell me what happened. i am bookmarking this page and I ONLY registered for making response to you my dear one. i will check on this. you are not coward. you have sufferedtoo much. SPECIFICALLY since the doctors and society were cruel -not only towards you- but you did not tolerate it as i didn't either. he laughed and left you in agony. relinquish that and trust GOD. promise? the mere act that you eat your xarelto on time makes GOD happy with you. and do not expect this would heal soon. this takes time. do not FEAR from this FEAR.

Thank you all for the replies and information it has helped me a lot.

I've been back to the hospital again today because my heart was at 160 and after about ten minutes I get a nose bleed which is hard to stop because of the blood thinners. The doctors said I have to wait four months to see an ENT and to basically walk around with tissue in my nose until then! I'm not joking. I feel unwell, my hearts going crazy, and my nose keeps bleeding. I really don't know what else to do as the keep sending me home. It's all very frustrating.

I felt very lonely also. I'm a year out and just starting to feel kind of normal again. People who haven't gone through it have no idea. The only thing I can add, is side effects. I was on Xarelto then Eliquis. Both had such severe side effects that I couldn't stay on them. It could be your case (I don't know that of course). I would ask your hematologist about stopping it for a few days to see how you feel. That would tell you if any of these issues are side effects.

I'm getting some nose bleeds lately because it's so dry in the house right now. Does your doctor think the bleeds are due to being on anticoagulants? I'm assuming when you described coughing up blood, it was when you had your PE, not currently right?

Listen, I'll be honest. I think you have to get a handle on your anxiety and stress. I think once you do that, it'll be easier to sort out what's what. If your doc was concerned you have PH, there are other tests they can do but an echo usually would indicate if there's a need for that. It took me about 6 months after my PE for my heart rate not to shoot up when I was walking. I had heart damage from the PE, but eventually it corrected itself which is usually what happens.

So, I would perhaps see a therapist if you aren't already. I started getting panic attacks about a month after my PE, out of what seemed like no where. Therapy gave me some tools to help me calm myself and it was really helpful. Make an appointment with your doctor about your bleeding and your anxiety and ask him if he thinks it's normal to have a high heart rate at this point. Ask him if an exercise echocardiogram is in order, since it seems activity is when your heart rate is high. When you are really stressed and anxious, it's very easy to become hyper vigilant about your body. So you may find you're constantly checking your heart rate or your pulse. Doing that may be triggering anxiety which may also increase your heart rate. So it's this vicious cycle. I'm not saying it's all in your head. Just saying there's a lot at play when you recover from a serious health event.

dear hello. please keep us ascribed of what you are doing.
right now (Nov. 12) what are you doing and how are you feeling?
pls tell us about the nose bleeding. this was due to xarelto. it's not at all like you will be going for 4 months with that. :(
please tell us. I want to understand what you say again and I want to hear again.
ONE BIG problem in you is the anxiety and depression and as another friend said yesterday you have severe anxiety and I share the same thing but you should take anti-anxiety pills dear. i know you said you have lost all trust in these physicians I KNOW. BUT you should take the pill and an anti-anxiety pill which is the least addictive. so benzodiazepines are bad. they cause addiction. dear who are you living with? TELL US who are you living with? just alone? do not be afraid from replying

HOW SHOULD I TELL YOU that you must take anti-anxiety pills and not on your own decision but as prescribed by a doctor? :( PLESASE
dear please

After suffering a saddle PE I too had anxiety issues and physiological things that were not there before. Increased heart rate, fatigue, I'm cold all the time, occasional chest pain. Went from doing anything I wanted to not doing much at all. You are not alone, everyone here has these issues and then some. Don't be afraid to seek help from family, friends, professionals., and groups like this, a minister. The big thing we have in common is we cheated the grim reaper. I tell myself that every day

The Rivaroxiban is not for everyone, it’s great because you don’t need to constantly monitor your INR levels. But if you are having nose bleeds go back and see same Dr to advocate for yourself to find out other options for medication. I experienced intense headaches, a nose bleed right after first pill. Because it would stop I didn’t go back to Dr to complain I simply followed instructions that came with medication. However once I began mensuration I hemmoraged from my uterus. There is no antidote for Rivaroxiban and it takes 24 hrs to stop bleeding. I opted to switch to a more controlled but less convenient blood thinner after needing a transfusion from losing too much blood.

Hey there,

Your heartrate issues are very similar to what I had for the first couple of years. You should find that they slowly, very slowly, decrease in intensity and frequency. Until then try taking a pause partway up the stairs or a 30 second sit down while puttering about the house, I did a lot of chair-hopping when I came home from the hospital. It's scary because the symptoms of healing sound so similar to the symptoms of problems but remember that your lungs experienced a trauma kind of like getting hit by a truck and needs time to heal.

Expect your body to be very sensitive to things that impact your breathing for a while. For me this included weather changes, smoky cooking, cleaning chemicals and especially the slightest sniffles which still give me shortness of breath years later. Besides the pauses/chair breaks I also learned pursed lip breathing in Pulmonary Rehab. It's very simple and effective for breathing better when you aren't getting enough air, and has the added mental benefit of giving your mind something to focus on that improves your physical experience instead of focusing on your worries. Google "pursed lip breathing" to see how to do it.

I am so sorry you are going through this, but others are right. You have to curb your anxiety or get on medicine. You might look at other things that you might be able to change that could contributing to all these issues. Bless you and I hope you find answers for your peace of mind soon.