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 was diagnosed on Sept 23/13 with PE's in both lungs, left lung is the worst and collapsed, right lung has small pe's and partial bottom quadrant collapse. The night it happened I was sure it was a full blown heart attack, which runs in my family and when the ER drs diagnosed the PE's I was in total shock and still trying to wrap my head around this, the only symptoms I had were leg cramps and very very tired for a month before. The internist is looking for early stage cancer but so far all tests have come back negative, which is good, I was recommended to the hemo dr on jan 24/14 to do further testing because they cannot find anything that has caused these clots.
This group has been very informative for me and I have gone back and read every post from the beginning. I have been very upset with the lack of information from my drs and Acc clinic nurses, who seem to either be too busy or not wanting to give me the info I need to make conscious decisions on my health. So I searched the web and found this group, I have been having a lot of headaches, dizziness/weakness and SOB for the last month, I am having a lot of trouble being alone when hubby goes to work, I try to keep busy and keep my mind off this thru out the day but every little pain or twinge sends me off the wall so to speak, it has raised my anxiety levels quite high some days and from what I am reading this is what others go thru as well. I have not been told what kind of PE's I have or their sizes and when I ask they seem to avoid answering my questions which is frustrating, so will try again tomorrow at my drs appt.
Thank you for listening and I will type more tomorrow as I am very weak and tired right now, I just need people to let me know what I am going thru is normal after having this happen and wish we had support groups here to talk to others going thru this, it has been life changing for me and I hope to some day get answers as to why this happened.
Sorry I posted in wrong area this morning :)
This group has been very informative for me and I have gone back and read every post from the beginning. I have been very upset with the lack of information from my drs and Acc clinic nurses, who seem to either be too busy or not wanting to give me the info I need to make conscious decisions on my health. So I searched the web and found this group, I have been having a lot of headaches, dizziness/weakness and SOB for the last month, I am having a lot of trouble being alone when hubby goes to work, I try to keep busy and keep my mind off this thru out the day but every little pain or twinge sends me off the wall so to speak, it has raised my anxiety levels quite high some days and from what I am reading this is what others go thru as well. I have not been told what kind of PE's I have or their sizes and when I ask they seem to avoid answering my questions which is frustrating, so will try again tomorrow at my drs appt.
Thank you for listening and I will type more tomorrow as I am very weak and tired right now, I just need people to let me know what I am going thru is normal after having this happen and wish we had support groups here to talk to others going thru this, it has been life changing for me and I hope to some day get answers as to why this happened.
Sorry I posted in wrong area this morning :)
I was diagnosed with bilateral PE's back in May 2013 along with DVT in my left leg.
I had a lot of panic or anxiety attacks the first few weeks. I told my doctor about it and he put me on some mild medicines to help me cope with things. I still have the occasionally bad day where the meds don't totally handle things but they are getting fewer and farther apart.
Everyone's path and recovery is different. To that point, I was very exhausted and felt weak for a few days and had SOB off and on the first few months. I still get SOB once in awhile. I continue to be tired but then again I keep pushing my body to its limits. I really should take a break and spend some "me" time resting,etc but hard to do when raising a 6 yr old and a 6 month old girls.
Some people try therapy, meditation, yoga, journaling, etc to help them deal with the anxiety and panic attacks. I do the journaling thing and can tell you that at as time has passed I need to do it less and less. Everyone finds what works for them and goes for it!
Hope you get some answers from your doctors here shortly. You are not alone!
I can understand the issues with anxiety, for sure. After diagnosis, I couldn't fall asleep in a room by myself. I didn't sleep much at all, anyway, because I was convinced if I went to sleep I wouldn't wake up. I did two repeat trips to the ER (one via ambulance) that both turned out to be anxiety. I did wind up taking anti-anxiety meds for a couple of years and I also saw a therapist for a couple of months. I had to do something... as it seemed like the anxiety was taking over my life.
Sorry to hear that you're not finding the support and information you need from your doctors. Be sure to write down your questions before you go in and, maybe take along someone else to help you process questions as well. You might also ask if you can see the lung scans and have someone explain them to you. I did that at the hospital and it was quite interesting and helpful to actually see what I was dealing with.
It does sounds like you've been through the wringer with the collapsed lungs on top of everything else. Have you seen a pulmonologist for help as well? That might be useful to you.
Also, not everyone finds a cause for their clots. There are the obvious culprits like long trips, injury/surgery, birth control or HRT, immobilization and dehydration. BUT, I've clotted three times and still don't know why. I've been tested multiple times and am negative for everything. They told me in the hospital that I might just have something they can't test for yet. I guess I'm saying that getting an answer there many not necessarily dictate how you move forward ... not everyone gets an answer, but we all get to move forward anyway.
Hang in there! This can seem like a long journey, but it does get better!
I will post again after my appointment today and fingers crossed I get some more answers. Thank you again I appreciate any advice or sharing of your stories with me.