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.
I went to the ER on may 27th with a very strong pain in my left side.
Before that I was having SOB for over a week. I woke up a week before with SOB and my pulse very high, my husband took me to ER but I was breathing better and decided just go back home. I went to see my doctor and she said it was my asthma, she gave me some prednisone and said I would be ok.
At the ER I had a urinalysis & blood work, a cat scan and some x-rays and the nurse just kept asking about my family blood clots & PE history, hours later the doctor said i have a bilateral PE and I need to stay at hospital for 3 days. The pain was so strong I literally cried for the first day,I had morphine and got really sick to my stomach.
In my second day at the hospital they decided to stop heparin and start with lovenox, so my husband could give me shots at home. I also had coumadin from day 01. I used Lovenox for 5 days and they called me from the anti- coagulation clinic and told I could stop with those shots.
I have been checking my INR every week since then and its always around 2.0 - 3.2 so they decided I can start going every 2 weeks now. I am happy but also anxious with that decision, everything is very scary.
I have no history of PE in my family, I don't smoke, and i try to be healthy. Doctors believe it was my Nuvaring and requested me to remove it,
They said they will test me for some blood disease but we need to wait for the coumadin therapy to be over with, besides that, they do not see another reason for me to clot. I am just 32 years old. I had just lost 40 pounds and I had started to walk one hour everyday, the night before the PE episode was my first 5 min running and I was so excited! its very frustrating to step back and have to walk at 1.6 again.
Months before my PE I had pain in my right leg for no known reason,I had 2 ultrasounds and nothing was found. Doctor just decided it was because I was doing Zumba, I still believe it has something to do with my PE. Sometimes when i was walking i could see my right leg was swollen, but my doctor said she could not notice any difference and i should not be worried.
So far its been a very scary journey, I have days that i feel nothing, days that my back hurts ( I believe its from my job, i sit 8 hours a day) One day my leg tingled for no reason and went away.. and everything worries me! i tried to stay positive but its not always easy.
Some days I feel so tired and sleepy I can barely keep myself awake at work. Like most of you here I am trying to have a healthy "normal" life but sometimes I get nervous. So, what symptoms should i really be paying attention to my recovery and what can I expect to be "normal"?
Have you guys went back to exercising while on coumadin and what kind of exercises do you do?
Before that I was having SOB for over a week. I woke up a week before with SOB and my pulse very high, my husband took me to ER but I was breathing better and decided just go back home. I went to see my doctor and she said it was my asthma, she gave me some prednisone and said I would be ok.
At the ER I had a urinalysis & blood work, a cat scan and some x-rays and the nurse just kept asking about my family blood clots & PE history, hours later the doctor said i have a bilateral PE and I need to stay at hospital for 3 days. The pain was so strong I literally cried for the first day,I had morphine and got really sick to my stomach.
In my second day at the hospital they decided to stop heparin and start with lovenox, so my husband could give me shots at home. I also had coumadin from day 01. I used Lovenox for 5 days and they called me from the anti- coagulation clinic and told I could stop with those shots.
I have been checking my INR every week since then and its always around 2.0 - 3.2 so they decided I can start going every 2 weeks now. I am happy but also anxious with that decision, everything is very scary.
I have no history of PE in my family, I don't smoke, and i try to be healthy. Doctors believe it was my Nuvaring and requested me to remove it,
They said they will test me for some blood disease but we need to wait for the coumadin therapy to be over with, besides that, they do not see another reason for me to clot. I am just 32 years old. I had just lost 40 pounds and I had started to walk one hour everyday, the night before the PE episode was my first 5 min running and I was so excited! its very frustrating to step back and have to walk at 1.6 again.
Months before my PE I had pain in my right leg for no known reason,I had 2 ultrasounds and nothing was found. Doctor just decided it was because I was doing Zumba, I still believe it has something to do with my PE. Sometimes when i was walking i could see my right leg was swollen, but my doctor said she could not notice any difference and i should not be worried.
So far its been a very scary journey, I have days that i feel nothing, days that my back hurts ( I believe its from my job, i sit 8 hours a day) One day my leg tingled for no reason and went away.. and everything worries me! i tried to stay positive but its not always easy.
Some days I feel so tired and sleepy I can barely keep myself awake at work. Like most of you here I am trying to have a healthy "normal" life but sometimes I get nervous. So, what symptoms should i really be paying attention to my recovery and what can I expect to be "normal"?
Have you guys went back to exercising while on coumadin and what kind of exercises do you do?
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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 do think Zumba can be hard on your legs. I did have a DVT, and I can't do Zumba anymore just because the impact really bothers my leg. Who knows you could have had small clot in your leg that has resolved and the pain you have is from that. I'm not saying that's what it was though. Just saying that there's that possibility, although most ultrasounds can show if there was an old clot. But if it were, it doesn't change anything about your current treatment or moving forward.
I think worry and hyper vigilance about your body is very common after a PE, as is feeling of shortness of breath and chest pains. Some of it is just your body recovering. Some of it may be from being too focused on your body which amplifies any ache or discomfort. Some of it may be anxiety related. Hard to say for sure, and it's likely all of the above.
Fatigue is really common when you go back to work after such an event. It's your body adjusting to getting back to normal. That gets better over time.
Be patient, try to get back to your normal routine; distractions are good if you start feeling on edge. Trust me. You are going to be fine. It just takes a little time to get it all back together again. Do not get discouraged. One day at a time as the saying goes.
I was also quite exhausted, even moreso at four weeks out than at diagnosis, just because I was pushing too hard to get back to normal. I could tell when I had "overdone it" just because I'd get increasing pain, fatigue, and SOB for a day or so. I definitely had good days and bad days and slowly the good days kept increasing. It seems like it takes forever, but it really does get better.
I was 35 when I got my PEs but it sounds like you were in better shape before your diagnosis than I was. I think if you can get back to exercise, even if it is walking around the block, I would do it. It'll help you feel like you're regaining some control over things. It might take a little trial and error to figure out how much is "too much" but you'll get there.
I think, in terms of what to be concerned about, anything that is new and suddenly quite different might be worth checking in with your doc. Otherwise, different degrees of pain, SOB, and exhaustion seem pretty normal for most of us. Also, the anxiety and fear can be a big thing ... if you find that those are taking over your life, it might be time to talk to your doctor about those too and see what options might be for sorting out your emotions (therapy, meds, journaling, meditation, etc.).
Hang in there! It does get better!
I have recently started to exercise, I bike, it feels really good. But earlier on I took really (REALLY) slow walks, and that was all I could do for the first months without having bad pains in the lungs and getting really really tired afterwards. After 4 months I got better and could start taking walks in normal pace, which felt really good.