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.
First off I would like to thank all of you who answer all our questions while healing yourselves, for me it means a lot as I am still having a lot of trouble getting my point across to health care providers unless I get really angry they don't listen, this site is the only one I can read without getting all anxious and having to walk away from the computer, thanks it means more than you all know.
My INR has been an issue for last 4 weeks been 3.2, 3.4, 2.9 now 4.1 and so now they are asking what I did wrong to make it go so high, first off I have always eaten a lot of green veggies and lots of salads, been very health conscious where my diet is concerned, I have never been a person to get headaches and now on warfarin I get them every day and told to take Tylenol which I did 4 pills in the last two weeks, I have degenerative arthritis and have lost 2 inches in height over the last two years, finally got an appointment with the specialist for my back then this happens and I have to deal with a compressed spine until they get my PE's under control and find out why I had them.
I understand that everyone's healing time is different but there are a lot of common symptoms to us all, I don't know what everyone elses health care providers are like but here I feel they sent me home and hoped for the best, sad but true, so I began researching online for what symptoms to look for and what I could do to get my overall health back to somewhat normal. I am a need to know type of person and up until a month ago I truly believed this was a walk in the park, boy was I wrong. I have had health care professionals tell me in the last two weeks to take it easy because I have been thru a major trauma and work my way up to doing more and more, then have some say well go back to work cause that will fix your anxiety and give you something else to think about, wow to the last one, I have not worked for over a year due to my back problems and now getting PE's which has further knocked me down, I left their office very depressed and not wanting to talk to anyone for days after that. Bottom line is I don't feel like I matter and I know I have to make conscious decisions for my own health but feel road blocks keep stopping me along the way, has anyone else dealt with this in their healing process?
Most will say to change doctors etc, well here in Canada that is sometimes very hard to do, there is a shortage of them and to see a specialist can take months, so that was frustrating to me before all this but now it is terrifying and causes huge anxiety for me, my family doctor is at least 8 weeks to get in to see for an appointment unless I go to a walk in clinic and then you are dealing with doctors who don't have a clue about your history.
I needed them to sit me down and explain the type of PE's I had, what damage there is and a rough estimate of my healing time, plus any diet regiments I need to watch out for like Vitamin K etc, and not have to learn that on the web, talk to me about my INR and how to keep it within range and what to change if it isn't, talk to me like I matter when my anxiety is high and I become weepy, maybe suggesting mild medication for it and not making me feel like I am a hinderance to your time, what symptoms should I be aware of that should tell me I need to go to the ER for further assessment. I have been having sharp short pains in the PE's areas in both lungs the last few days and asked them if its my lungs healing or something I should be concerned with, they said that doesn't sound right ask your doctor, well I don't see her for another 10 days, wow thanks again. I am getting so angry inside as days go on and I understand I am a survivor thru all of this, maybe I should listen to my husband and put my experience to good use and not let others go thru what I have with no one to talk to, but I am not at that stage right now as I am still trying to cope with it all and my knowledge is not where I would like it to be, one day I guess.
Thank you again for reading my long post and I appreciate any insight you may have.
My INR has been an issue for last 4 weeks been 3.2, 3.4, 2.9 now 4.1 and so now they are asking what I did wrong to make it go so high, first off I have always eaten a lot of green veggies and lots of salads, been very health conscious where my diet is concerned, I have never been a person to get headaches and now on warfarin I get them every day and told to take Tylenol which I did 4 pills in the last two weeks, I have degenerative arthritis and have lost 2 inches in height over the last two years, finally got an appointment with the specialist for my back then this happens and I have to deal with a compressed spine until they get my PE's under control and find out why I had them.
I understand that everyone's healing time is different but there are a lot of common symptoms to us all, I don't know what everyone elses health care providers are like but here I feel they sent me home and hoped for the best, sad but true, so I began researching online for what symptoms to look for and what I could do to get my overall health back to somewhat normal. I am a need to know type of person and up until a month ago I truly believed this was a walk in the park, boy was I wrong. I have had health care professionals tell me in the last two weeks to take it easy because I have been thru a major trauma and work my way up to doing more and more, then have some say well go back to work cause that will fix your anxiety and give you something else to think about, wow to the last one, I have not worked for over a year due to my back problems and now getting PE's which has further knocked me down, I left their office very depressed and not wanting to talk to anyone for days after that. Bottom line is I don't feel like I matter and I know I have to make conscious decisions for my own health but feel road blocks keep stopping me along the way, has anyone else dealt with this in their healing process?
Most will say to change doctors etc, well here in Canada that is sometimes very hard to do, there is a shortage of them and to see a specialist can take months, so that was frustrating to me before all this but now it is terrifying and causes huge anxiety for me, my family doctor is at least 8 weeks to get in to see for an appointment unless I go to a walk in clinic and then you are dealing with doctors who don't have a clue about your history.
I needed them to sit me down and explain the type of PE's I had, what damage there is and a rough estimate of my healing time, plus any diet regiments I need to watch out for like Vitamin K etc, and not have to learn that on the web, talk to me about my INR and how to keep it within range and what to change if it isn't, talk to me like I matter when my anxiety is high and I become weepy, maybe suggesting mild medication for it and not making me feel like I am a hinderance to your time, what symptoms should I be aware of that should tell me I need to go to the ER for further assessment. I have been having sharp short pains in the PE's areas in both lungs the last few days and asked them if its my lungs healing or something I should be concerned with, they said that doesn't sound right ask your doctor, well I don't see her for another 10 days, wow thanks again. I am getting so angry inside as days go on and I understand I am a survivor thru all of this, maybe I should listen to my husband and put my experience to good use and not let others go thru what I have with no one to talk to, but I am not at that stage right now as I am still trying to cope with it all and my knowledge is not where I would like it to be, one day I guess.
Thank you again for reading my long post and I appreciate any insight you may have.
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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.
I can understand exactly what you're saying. I am now about one month since I was hospitalized with bilateral PEs and two DVTs in my left leg. I entered the hospital on Nov. 4th and was released on Nov. 7th. I was told that I would be initially going to a Clinic for Warfarin treatments to get my INR levels to a therapeutic range (2-3). I was so scared. I mean, I thought that I could just stop breathing at any point and here they are releasing me from the hospital? I knew absolutely nothing about this condition. I too have pains in my chest. I've learned, from the people on this support group, that this is a somewhat common occurrence. I think the one thing that bothered me the most was "how did I get the clots?" While I was in the hospital, the hematologist took a number of blood tests including Genetic testing. Well, they found that I had Factor V Leiden I. So this was probably one reason for the blood clots. However, I have to say that the NOT KNOWING is the hardest part in all of this. You're two months out and you're getting better each day. I think you're doing the right things to get over this.
thank you again :), it means a lot
Its not uncommon to have INRs that fluctuate in the early going. I mean, your clots were not that long ago based on your profile. So you have to remind yourself youre just starting your recovery journey. Theres no real secret with INRs and warfarin but in general, stick with your regular diet and try to be somewhat consistent with it. Sometimes you will get all kinds of info from the medical field about how you shouldnt eat certain things and that you need to make these huge dietary changes. Thats an old way of thinking. Warfarin is a finicky little drug and doesnt behave the same way in everyone, so thats why we test frequently. Its the nature of the drug.
Doctors sent you home because you were no longer in danger. Thats what is so hard to wrap ones head around: how could such a seriously, life threatening event suddenly be so benign that you are told to go home and live your life. But its true. Once diagnosed and treated, theres really not much more to do. You take your warfarin for however long they tell you and you rest for a bit and then go on about your business. Providers dont always understand recovery because many dont have many patients whove had PEs or who has survived them. Doctors treat PE patients in the hospital and never see them again, so it stands to reason they may not know the nuances of recovery since they dont experience patients post diagnosis.
I would suggest making an appt with your doctor, even if it means waiting 8 weeks. That way, you have your appt on the books and youll be able to take all your questions to him, ask about seeing a specialist if needed and go over your medical records which would show the extent of the clots, location, etc. I would also ask your doc about any genetic blood testing to see if theres a genetic reason for your clots, if theyre not sure what caused your clots. . No doctor is going to be able to tell you the exact healing time. I suspect if youve had health issues prior to your PE, it may take longer but its hard to say. Just know its not like this over night thing. Also, its not an all or nothing thing. Yes, you need time to heal, but that doesnt mean you do nothing for 3 months either. I went back to work shortly after my PE despite not being back to a 100%. So the recovery is a process.
I also cant say enough about counseling. I started having a lot of anxiety about a month after my diagnosis and then panic attacks started. Seeing someone professionally was probably the single best thing I did for my recovery.
I do understand being a need to know kind of person and how hard it is to not have all the information you feel you need. If youre a black and white kind of person, this is maddening because there may be some things youll never know. Ive had PEs and two separate DVTs and I have no known cause for the clots. Thats a hard thing to work through, having this happen to you and not understanding exactly why. Once of my docs has a theory about why I clot, but thats all it is, a theory. It made me very agitated to not know for sure. But at a certain point, I surrendered a bit and just accepted that this is what it is. And in accepting that, it freed me up to just put all the energy I was spending searching and worrying and reeling into in the things that deserved my energy, like my family and friends and just living well and whole
If youre getting worked up a lot, thats not doing you any favors, physically or emotionally. Take a deep breath, relax. It will be ok.
Very well said. You are so right about how you described this "event" that we're going through. Time heals all wounds.
indwen
My clots were several years ago, but honestly I remember so vividly what those first couple of months were like. You feel like a live wire. It really does get better. You start to feel stronger and gain confidence in your body, and you find yourself being you again, thinking less about the clot and more about, well, everything else.
Hang in there guys!
Thank you again I appreciate any and all advice to move forward :)