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.
Hi! First I want to say I am so glad that I found this group! I already feel better reading some of the posts. It is so hard to find information that pertains to what seems like your specific symptoms, etc. Even from Drs! All I keep hearing is "you're so lucky to be alive!" Yes, I realize that and am thankful, but it doesn't help!
A little background, I was diagnosed on 4/29. I am 36, very active. It seemed to be a perfect storm of events. I had been put on birth control for 2 weeks and during that time, took a long road trip over 4 days (9 hours each way). Also, drank a lot during that trip (I read on this board about dehydration, that was definitely in play). So, I am on Warfarin for at least 3 months, and just came off Lovenox this week.
What lead me to the diagnosis was I was having skipped heart beats, or PVC's. I went to the Dr, they did an EKG, sent me home. I just knew something was not right, and did not feel good. I could feel my blood pressure. I drove myself to the ER. BP was 150/110. They were trying to diagnose why I was having PVC's (and about to send me home!) when the lab work came back with high clot markers, and a CT Scan found it. The Dr. was shocked bc my oxygen was never below 99%. He also told me the heart beats were not related. (I'm quite certain the heart and lungs are co-workers...) After being admitted, the Dr's told me that of course they were related and would go away as I healed.
Well, for the first week I felt ugh. Went back to work too soon, etc. But, during the second week, I started feeling great. Full energy, etc. Went back to full exercise, working 50 hours, chasing a 2 year old and teaching fitness classes. The heart beats were getting way less. Then 2 days ago, I started feeling worse again. As in, more skipped heart beats. Oxygen is still fine, heart rate sometimes increases, BP was a little raised. I am therapeutic, but still went to my PCP because, well, it's nerve wracking! She took labs to test clot levels (although if my clot is still there, what good does that do?!) and told me that she has never heard of symptoms coming and going once the person is feeling better. Which, needless to say, was NOT helpful.
So, my question: how long will it take? And has anyone else experienced PVC's or skipped beats, etc. I have had 34 EKG's and an echo gram, etc. all were fine. I know they said they would dissipate, but when? I know I have to be patient, it's hard. My husband told me I am just going too hard, but I thought it would be okay because I was feeling great.
Sorry this is so long, apparently I really did need this group and someone to ask! Thank you!
A little background, I was diagnosed on 4/29. I am 36, very active. It seemed to be a perfect storm of events. I had been put on birth control for 2 weeks and during that time, took a long road trip over 4 days (9 hours each way). Also, drank a lot during that trip (I read on this board about dehydration, that was definitely in play). So, I am on Warfarin for at least 3 months, and just came off Lovenox this week.
What lead me to the diagnosis was I was having skipped heart beats, or PVC's. I went to the Dr, they did an EKG, sent me home. I just knew something was not right, and did not feel good. I could feel my blood pressure. I drove myself to the ER. BP was 150/110. They were trying to diagnose why I was having PVC's (and about to send me home!) when the lab work came back with high clot markers, and a CT Scan found it. The Dr. was shocked bc my oxygen was never below 99%. He also told me the heart beats were not related. (I'm quite certain the heart and lungs are co-workers...) After being admitted, the Dr's told me that of course they were related and would go away as I healed.
Well, for the first week I felt ugh. Went back to work too soon, etc. But, during the second week, I started feeling great. Full energy, etc. Went back to full exercise, working 50 hours, chasing a 2 year old and teaching fitness classes. The heart beats were getting way less. Then 2 days ago, I started feeling worse again. As in, more skipped heart beats. Oxygen is still fine, heart rate sometimes increases, BP was a little raised. I am therapeutic, but still went to my PCP because, well, it's nerve wracking! She took labs to test clot levels (although if my clot is still there, what good does that do?!) and told me that she has never heard of symptoms coming and going once the person is feeling better. Which, needless to say, was NOT helpful.
So, my question: how long will it take? And has anyone else experienced PVC's or skipped beats, etc. I have had 34 EKG's and an echo gram, etc. all were fine. I know they said they would dissipate, but when? I know I have to be patient, it's hard. My husband told me I am just going too hard, but I thought it would be okay because I was feeling great.
Sorry this is so long, apparently I really did need this group and someone to ask! Thank you!
-
Look at what my best friend did with my picture!
-
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 had lots of PVCs and PACs too. I've had episodes of them in the past, before my PEs, so at first I tried to ignore them, but they were so frequent and intense that I got them checked out, and had a 24 hour Holter monitor done. I had just under 2000 PVCs and PACs during the 24 hours which is considered a low burden and the cardiologist said it was nothing to worry about. That was very helpful because it took any anxiety I felt about feeling them away, and I'd just tell myself to not worry about them when they happened. It took me several months before they finally went away. I also was diagnosed with some right heart strain, that resolved in about a month.
One thing I've found helpful with the PVCs is to avoid caffeine and other stimulants. Alcohol too. Also just getting over tired can bring them on.
Hang in there. Things will improve over time.
Your doc doesn't know because she probably hasn't had a lot of experience with PE recovery but it doesn't take a medical degree for her to know if you are overdoing it after a serious health event, you may feel like crap.
You'll be ok!
I had my PE three months this week. I too have been told numerous times "you 're so luckly to be alive!"
I must say I too have alot of questions. I am looking at everyday as a gift . I have some good days and some not as good. My energy levels are forever fluctuating. I was told by a friend of mine who had this to take baby steps. Life as I knew it is on hold. I need to rebuild slowly. Everyone is at their own pace. She told me listen to my body since overdoing it will cause setbacks. She had her embolism a few years ago and today she is active like before.
In researching I read that recovery time is different for everyone. I have not had PVS or skipped beats. I still do suffer from shortness of breath and chest pain at times. Remember to stay postive we can get through this and overcome the obstacles in our way.
I have been looking for a support group and found one today,
For me, I felt worse at five weeks out than I did at diagnosis. At diagnosis, the only symptom I had was severe SOB (shortness of breath). I walked myself into the ER and had to deal with doctors who thought there was no way I had PEs. In my first few weeks of recovery--other than the emotional stress and shock--I really felt like I was bouncing back. The SOB went away and I wasn't dealing with any of the exhaustion or pain or other symptoms that people on here talked about. I felt a little cocky about how well I was doing, actually.
But, at about five weeks after diagnosis, I was at work and did a quick jog to get back to a customer quickly. About an hour later, I was so exhausted I could barely sit up. By the time I got home, I was so exhausted I was crying. I had pain along my breastbone and spine, increased SOB, and anxiety through the roof.
I had a repeat CT and my clots were already gone. I had just been pushing myself too hard! My primary doc (gently) slapped me on the wrist and cut back my work hours. I took another three months to work back up to a full work schedule. I definitely would feel better for a few days, but if I pushed myself too hard, I'd wind up on the couch all weekend, exhausted and SOB, and just trying to recover. These "bouts" of increased pain, SOB, and exhaustion came and went up until about 11 months out.
Everyone is different, of course, but it sounds like you may get some kickback if you overdo it as well. Also, your other symptoms with the PVCs, may definitely kick up if you push it too hard. It really is hard to figure out your limits until you hit them, but it sounds like you did. If a little R&R makes your symptoms go away, it probably just means that you overdid things. It's good to get checked out if you're worried about it, but over time you'll start to recognize when you pushed too hard.
Over time, too, it'll start to get better and better. Hang in there!
I am trying to rest more, per all of your advice, and that does help. I think the worst part is actually being at work, because I sit at a desk for most of it, and have time to get caught up in my own head!
I am 4 weeks today from the day of diagnosis and just keep praying to feel better every day. :) Hope you all are feeling well, too!