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.
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.
I had bi lateral PE's the end of May 2013. It just takes awhile to get back on track to where one was before all of this happened.
The first month I was tired, exhausted, SOB off and on, in tears at he drop of a hat, and so on.My anxiety was through the roof at times. I finally went to my GP and talked to him about what all was going on with me. He finally put me on a low dose of Prozac with a low dose of Xanax for crisis times.
Once I was able to get the anxiety & panic under control, things started to fall more in place for me and to settle down. The first time I drove 1 hour by myself I had to keep giving myself a pep talk the whole way down!!
I found that keeping a journal helped me a lot along with the medicine. Some people see therapists, do yoga, meditation,etc to help them deal with the anxiety & panic that they go through after having a PE. Whatever works the best for you is what you need.
I am now almost 7 months out and things are a lot better. I am off the Xanax but still take the Prozac to help with the general anxiety,etc. I am tired but I am also working 2 hours a day plus raising a 6 yr old and a 8 month old grand daughters! The SOB is pretty well gone until I overdo or it gets too cold outside.
For some reason, no one ever tells us what to expect during recovery in general as everyone's recovery is different. Some feel good in just a few months, and some take a while longer.
I would keep asking questions from your GP/DR and if you don't get answers maybe consider switching if possible.
Hang in there...you are among friends here!
Lots of good advice in kslady's post. A few observations about your post, fatigue before and after PEs is reasonably common. Weakness, dizziness etc again are all quite common before and after. Doesn't make it any easier though :-). Cancer is a common check, but not necessarily likely.
Since my first set ~a year ago, I've had around 6 follow up appointments at the hospital. Nothing found to explain the clots (~30-40% of people don't find a cause) & I don't really think I'm much better informed than when I started and I found out that I had a lot of large PEs. I get the impression that they're not too interested in the number/size/location, rather just the fact that you've had them. When they were scanning my leg for clots, they found a bit flapping away at the top of my leg and didn't bother scanning any more. After all, once started on anti coags, its just a waiting game and they don't need precise information to affect that decision.
Personally, I've not had much anxiety, but I'm probably the odd one out here. In fact, I only had chest pains after a 2nd bout of PEs which was much smaller than the first ...
It really is a waiting game at this stage, give yourself as much time to rest as possible. You're ~2.5 months since diagnosis so much safer than at that time. Hope the recovery goes well.
Indwen
indwen