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 feel like I need to tell my story and vent a little bit.
I am an active teacher, mom, and graduate student. My DVT woke me up around 3:30 a.m. on February 24th. About 10 hours later while I was in the hospital the clot started moving. I had two seperate PE events. Both were extremely painful, but I was definitely blessed to be in special care when they happened. During all the testing they found a tumor the size of a lemon on my ovary which they said probably contributed to the DVT.
My treatment was complete bed rest, a couple days on oxygen, and had two surgeries to insert a filter and do an embolectomy on the DVT in my leg. During the surgery the doctor diagnosed me with MTS (May-Thurner Syndrome). I was not able to hold down food almost the whole time I was in the hospital. I was released on March 1st and told I could go back to work in two weeks.
Two weeks came and went like a flash and my GP said to wait another two weeks. Those have passed and I'm worse, not better. In the last month I have been diagnosed by my Pulmonologist with pleurisy which is an inflamation of the lining around the lung. Friday, March 1st my Gastrointologist diagnosed Tietze's syndrome which is a virus that causes inflamation in the cartiledge between the ribs.
I have two follow-up appointments this Tuesday. One with the vascular surgeon who thought I would be back to work by March 15th and the other with the GYN oncologist. I'm not generally a worrier, but I would be lying if I said I wasn't scared that they are going to add Cancer to the mix. I want my life back. I'm not even 40 yet and I'm already sick and tired of being sick and tired.
I am an active teacher, mom, and graduate student. My DVT woke me up around 3:30 a.m. on February 24th. About 10 hours later while I was in the hospital the clot started moving. I had two seperate PE events. Both were extremely painful, but I was definitely blessed to be in special care when they happened. During all the testing they found a tumor the size of a lemon on my ovary which they said probably contributed to the DVT.
My treatment was complete bed rest, a couple days on oxygen, and had two surgeries to insert a filter and do an embolectomy on the DVT in my leg. During the surgery the doctor diagnosed me with MTS (May-Thurner Syndrome). I was not able to hold down food almost the whole time I was in the hospital. I was released on March 1st and told I could go back to work in two weeks.
Two weeks came and went like a flash and my GP said to wait another two weeks. Those have passed and I'm worse, not better. In the last month I have been diagnosed by my Pulmonologist with pleurisy which is an inflamation of the lining around the lung. Friday, March 1st my Gastrointologist diagnosed Tietze's syndrome which is a virus that causes inflamation in the cartiledge between the ribs.
I have two follow-up appointments this Tuesday. One with the vascular surgeon who thought I would be back to work by March 15th and the other with the GYN oncologist. I'm not generally a worrier, but I would be lying if I said I wasn't scared that they are going to add Cancer to the mix. I want my life back. I'm not even 40 yet and I'm already sick and tired of being sick and tired.
That being said... OMG!! You have been through the wringer and back already!! I too am relatively young (44) and understand what you mean about being sick and tired of being sick and tired!! For the first time in my life... I am compromised. I absolutely loathe the feeling!
I hope they figure everything out and it's SO ok to be scared and seek some support here. You contribute so much to the posts and people here... We are with you!!
I am sorry you had to go through this Amy. I know there is nothing that can be said that is going to make you feel better or a wand anyone can wave to put all the puzzle pieces back together. If you need to talk or vent though we are here.
You really have had a lot to deal with! Working through PEs and DVTs plus the worries about possible cancer have got to be incredibly draining! I hope you are pampering yourself a little bit these days ... you deserve it!
All that said, I was much worse at four weeks out than I was at diagnosis. I had only severe SOB when I was diagnosed and considered myself lucky not to have all the pain and exhaustion that folks on here were talking about. I went back to work part-time (four hour days) only four days after getting out of the hospital. I was working my way back up to a full ten-hour day at work and felt like I was pretty much OK.
One day at work, I jogged across a room to get back to a customer and an hour later I got hit with an insane level of exhaustion. I slid downhill fast and my boss finally sent me home saying "You look like you're going to pass out." When I got home I was so tired all I could do was lie on the couch and cry. I suddenly had pain show up in my chest and along my spine and shoulders. My SOB came back (although not as bad). I spent all weekend recovering and feeling panicky.
A repeat CT showed that my PEs were gone and my doc chided me (nicely) for pushing myself too hard. I cut back on my work hours again and took another three months to work back up to a full day at work.
I guess what I'm trying to say is, take it easy on yourself. I think the docs are crazy when they say "two weeks" after PE you'll be all better and can go back to work. You've got a ton of stuff going on and you should focus on getting well again ... not going back to work. You're not a failure for not making it back; it just means you have your priorities straight.
I'm only 36 at this point and I'm totally with you on being sick and tired of being sick and tired. Seems like it is one thing after another and that can be exhausting all by itself. Taking care of yourself is sometimes a full-time job. Hang in there!
i hope that you've received all the bad news that you are going to, and that you soon turn the corner on this horrible chain of events in your life. i wish you strength as you endure this journey,
I want to say thank you to everyone that posted. I was really struggling and y'all lifted me with your kind words of support. God Bless You All!
hugs
ferr