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.
Hello! I am brand new here and to all of this so please bear with me.
I went to the ER on Wed. May 22 with mild chest pain and a shortness of breath. After running tests, the doctors were surprised to find that I had blood clots in both lungs. Thankfully, my O2 levels were high and I never had to be on oxygen.
I spent from May 22-28 in the hospital getting the Lovenox shots
( 150 mg 2 shots) twice a day. They also started me on Warfin. I was discharged yesterday when my INR reached 2.1 I go for my first out of hospital INR testing this Friday.
They did do an ultrasound and find I had 2 blood clots in my left leg.
I have to agree with everyone that they tell you a lot about the medicine part of things but not about the emotional aspect of this. I am now home with my husband, 5 yr old grand daughter, 20 year old son & his girlfriend plus a 1 month old grand baby. Even tho they are glad I am home, I don't think they fully realize how serious this was or could have been. I know they don't understand the way I am feeling.
I tried to go right back to a "normal" life today but quickly found out that I can not do that right now. I am having to set new limits for myself and my family. I am considering asking my doctor next week about putting me on some anxiety medicine. I was already on some pain meds for my back and shoulder.
So how does one survive these first few days at home? What are some good guidelines or limits? What can I expect? I know that for now they are looking at me being on the Warfin for 6 months but are also waiting on the test results to see if it will be a lifetime thing.
Thanks for any help and support!
I went to the ER on Wed. May 22 with mild chest pain and a shortness of breath. After running tests, the doctors were surprised to find that I had blood clots in both lungs. Thankfully, my O2 levels were high and I never had to be on oxygen.
I spent from May 22-28 in the hospital getting the Lovenox shots
( 150 mg 2 shots) twice a day. They also started me on Warfin. I was discharged yesterday when my INR reached 2.1 I go for my first out of hospital INR testing this Friday.
They did do an ultrasound and find I had 2 blood clots in my left leg.
I have to agree with everyone that they tell you a lot about the medicine part of things but not about the emotional aspect of this. I am now home with my husband, 5 yr old grand daughter, 20 year old son & his girlfriend plus a 1 month old grand baby. Even tho they are glad I am home, I don't think they fully realize how serious this was or could have been. I know they don't understand the way I am feeling.
I tried to go right back to a "normal" life today but quickly found out that I can not do that right now. I am having to set new limits for myself and my family. I am considering asking my doctor next week about putting me on some anxiety medicine. I was already on some pain meds for my back and shoulder.
So how does one survive these first few days at home? What are some good guidelines or limits? What can I expect? I know that for now they are looking at me being on the Warfin for 6 months but are also waiting on the test results to see if it will be a lifetime thing.
Thanks for any help and support!
I had a hard time coming home b/c I was still in so much pain and had crazy low ox levels with activity.. I learned to set new limits the hard way so its encouraging to see that you already realize the need to set limits. I learned that although my body sometimes sends me mixed signals with all this --- I learned to really listen to my body and to take it ez when I need to & to build my endurance as my body allowed. Even now, 3 months out, my husband or coworkers will say --Your breathing really hard.... sit down... I don't even notice when it happens until they point it out.. I feel much progress.
I also have been blessed with a great followup medical team (my primary dr office team & lab, pulmonologist & hematologist --to try to determine where they came from). It has been really helpful to have my husband involved in my treatment also so we can address questions/concerns with the drs together... It's been alot on him too..
I don't think that outside people who haven't been thru this understand that it is traumatic... Unfortunately, we know... but Fortunately, we are Survivors. --Wishing you the very best!!
Here is some information that may be helpful to you:
http://files.www.clotconnect.org/DVT_and_PE.pdf
Other good resources of information are:
wwww.stoptheclot.org (webpage for the National Blood Clot Alliance)
www.clotconnect.org (the University of NC Blood Clot Outreach Program)
R/Tom
When I had my PEs, I actually had a history of clotting with a couple DVTs in the past. I had been totally fine dealing with the DVTs, so you would think I would handle the PE diagnosis well also. Totally not true! I was completely unprepared for the emotional wallop that came with the PEs. I was totally numb while I was in the hospital (less than 24 hours), slept like a log the first night I was home, but the next day the anxiety crept in full force. I did a repeat trip back to the ER via ambulance with symptoms that turned out to be anxiety (and I did another ER trip a few months later also with anxiety). I couldn't sleep because I was afraid I wouldn't wake up. I could even TRY to fall asleep if I was in a room by myself.
I fought it pretty hard for a few months, but then finally went to therapy for a couple months to help me work through it. I also went on anti-anxiety meds for a couple of years (came off in early 2012). Still, it was a long, hard road. Even now (three and a half years later) I can get pretty worried if I get sudden back or chest pains ... even if I know why I have them! The anxiety is really not very logical and it can take over your whole world if you let it.
Recovery can be really hard because although we all *look* normal, our insides are still recovering. Clots really strain some of the biggest systems in our bodies (respiratory and circulatory) and it can take a long time to really begin to heal from all that. And, of course, besides the physical stress there is still the emotional stress of the whole situation.
My advice? Be honest with your family about what you can and can't do right now. They have no way of knowing what you feel like and what your limits are unless you tell them. If you're really having stress, go visit your doc and talk things through and get checked out. It's always better to have the peace of mind from being checked out than to fret constantly. And, if you think there's a big problem, just head for the ER. Sometimes, having a plan can help settle your mind.
It'll take a while for you to figure out what you can and can't handle emotionally. You might push it too hard one day and be exhausted the next. We've all done that. Don't assume that recovery is a straight line. It might be one step forward and two back for a while, but eventually you're taking more steps forward and fewer back. It really does get better, it can just take much longer that we want it to.
Hang in there! Keep us posted!
Tomorrow I go for my first INR since leaving the hospital.
I am kind of under a time restraint plus it will be my first 1 hour long drive( one way)by myself. I would prefer some to go with me, but things are not going to allow that. I know I can do this and be okay.
Just so much new stuff to learn. I just got off the phone with my pain specialist's office and had to cancel my shots for my back. I did remember to ask them some questions tho. So I know for now, those types of shots are going to be on hold for awhile. That is okay.... I will survive!
Once more thanks for all the helpful advice and support!
I was diagnosed with my PE on 3/5/13 and now I very rarely take them anymore. I am now at my exercising at boot camp.
This forum helped me so much. Keep reading the different posts because I found that all my aches, pains and concerns were my new normal and other people had them too. Take Care.
I wish you well!
When I went for my first run post PE, i only ran 1 mile slow indoors on a track. I told myself, it is ok to only run a mile. Then the next time I ran, I added 1/2 mile. I went very slowly with the mile increase and pace. I watched my heart rate very closely to with my running watch. I added in light weights as well to get a bit stronger. I came up with a fun workout which I had never done before. In the past I would always just run my run and later do weights. But my new workout was run 1/2 mile, do 2 weight machines 3x15 reps at light weight, run 1/2 mile, 2 more weight sets of another kind, run 1/2 mile....etc. It was fun because it broke up the run and broke up the weights and not so boring. Also, I started to increase mileage indoors. The next step was to start running outside and slowly get to 3miles straight. Today I can run 5 or 6 miles. I feel that it will be a big stretch for me to go further than that but I'm hopeful to get there. Hope this helps.
Last night I was having some chest pains, coughing and nothing came out, and shortness of breath just bending down to pick things up off the floor. I've learned not to panic though. I will not call an ambulance unless I'm on the floor gasping for air. I don't want to bombard the emergency room each and every time I feel like something is going on inside my chest. I also don't take any anxiety medication. I don't want to get into that kind of medication at this point in time.
Sometimes you have to learn how to calm yourself down. I know it is hard. I have been so scared before when I almost collapsed in 2009 in Laredo Texas after driving 30 hours straight. I had 911 on prepend on my cell phone as I drove back to the truck stop. I have never been that scared in my life. Looking back now I possibly had a PE all the way back then and just didn't realize it.
You have to understand that once your INR levels are stabilized at 2.0 and over, you're pretty much protected. Your chance from dying even if you have another pulmonary embolism is very slim. Being properly anti-coagulated significantly reduces your chances of dying. The good thing is that you caught this condition early, you only have two clots in the leg and not the entire leg, you are in a really good position to make a full recovery.
I am on pain meds every day these days. I take way less than I've been prescribed because I feel guilty about taking them, but the fact of the matter is that I can barely get around without them. I'm not coming to grips with the fact that I've probably been suffering clotting events for years before I received my diagnosis and that I might have problems with both legs.
I consider the fact that I fell down in 2012 a good send because it alerted me of my clotting condition. It more than likely saved my life. The accident that I had forced me to go into the emergency room and find out exactly what is wrong with me. I also used to have swelling In my ankles dating back to 2007! I once spent an entire winter living inside my cramped cargo van running the engine for heat in between loads. I only got out to load and unload, or to eat and take a shower. Both of my ankles were swollen so bad. I bet I had clots back then and just never realized it!
You've already beaten the odds that up to 30 percent of all people with PE will die. You didn't die. You are properly anti-coagulated. It's extremely unlikely that you are going to die anytime soon. You just need to focus on the positive things in life. Also, have your friends and family read the stories of those who have suffered DVT/PE and how it affects their daily activities.
I still have family members tell me that If I exercise the pain will go away. Or that I look normal and that there is likely nothing wrong with me. You've gotta fact it; healthy people simply don't understand what we're going through. Any how, keep up the good fight, and don't let this keep you down!