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What does it feel like when DVT becomes PE?
Started by Tammy
Posted: December 4, 2010 at 14:34
I'm newly diagnosed with DVT as of Monday. Still dealing with the shock of it all. My doc has been very helpful with understanding treatment, long term effects, etc. without overwhelming me. What has me the most paranoid is that she said call paramedics if I get pain in chest, back, or worst headache ever. I am pretty sure I'd know if I was having my worst headache ever but have no idea what type of chest/back pain warrants a call to paramedics. Can someone who has been through DVT moving to PE give some info about what it feels like? I get a slight gas pain and I find myself asking "hmmm, is that a chest pain? am I short of breath? nah, just a gas pain." I'm sort of driving myself nuts : )
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Re: What does it feel like when DVT becomes PE?
Reply #1 by Peggy
Posted: December 4, 2010 at 16:57
For me I just feel winded....then in when it got WAY WORSE I could barely walk. I did not experience pain really..until it was critical. At that point still I only felt pain around my collar bones.... Looking back it just felt like I couldn't catch my breath and I was tired. I knew something "wasn't right" I just couldn't put my finger on it.
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Re: What does it feel like when DVT becomes PE?
Reply #2 by Peggy
Posted: December 4, 2010 at 16:58
For me I just feel winded....then in when it got WAY WORSE I could barely walk. I did not experience pain really..until it was critical. At that point still I only felt pain around my collar bones.... Looking back it just felt like I couldn't catch my breath and I was tired. I knew something "wasn't right" I just couldn't put my finger on it.
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Re: What does it feel like when DVT becomes PE?
Reply #3 by Sharon
Posted: December 4, 2010 at 20:07
I was winded too..Carried a basket of laundry upstairs and took nearly 5 minutes to catch my breath again.

DVT is serious business but a PE can be deadly. If in doubt go get it checked out!
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Re: What does it feel like when DVT becomes PE?
Reply #4 by Mark
Posted: December 5, 2010 at 06:13
very winded when bending over or walking up a few steps on the stairs...mine led, rather quickly, to a searing pain in my chest and significant shortness of breath (I had a saddle PE). For me, I hobbled into the ER bent over in pain and unable to catch my breath, with something unmistakably wrong.

However, I still have what I would consider phantom pains in my chest and legs, not severe at all though. Regular ultrasound every 2 months and very stable INR levels keep my paranoia isolated to just a few hours every day!

Good luck to all.
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Re: What does it feel like when DVT becomes PE?
Reply #5 by s
Posted: December 5, 2010 at 22:24
I got a really really tight back (in the top centre of my back) that started feeling as a really tight muscle but nothing could relive it. then stabbing pain in right hand side (rob area) through to inside of the shoulder joint.

the back pain stopped me walking and the rib pain is like nothing i had ever felt before- you really do know that something is v v wrong.

try not to worry too much- after a couple of weeks you do start to realize that aches and pains keep coming and you start to pay less attention to them.
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Re: What does it feel like when DVT becomes PE?
Reply #6 by Tom in Connecticut
Posted: December 6, 2010 at 13:02
Tammy, classic signs of a PE are:
Sudden shortness of breath

- Chest pain-sharp, stabbing; may get worse with deep breath
- Rapid heart rate
- Unexplained cough, sometimes with bloody mucus

However, symptoms can be as subtle as a high resting heart rate or light headedness. Physicians also often mis-diagnose a PE as being another medication condition due to classic symptoms not being present or patient not having a DVT (anxiety, upper respiratory, etc.).


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Re: What does it feel like when DVT becomes PE?
Reply #7 by What's a PE Feel Like
Posted: December 6, 2010 at 19:03
I was down on the floor on all fours. I could not stand up. The dog had to be fed! It would take me 2-3 hours to get to my bed from the hallway which is a very short distance. Crawl once - try to breathe. Knew something was very wrong and thought it was hypotension so when the snow broke and we could get the 4x4 out to get to the hospital I got 'dumped' in as I could not help myself. I too had a lovely pair of saddle PE's, each about the size of a golf ball. The ER Physician who doesn't rattle easily was pretty upset. I've hever had pain with a PE or DVT. They just sorta show up. The lung specialist ordered t-PA and that was the end of my PE's. He told me they very, very seldom cause problems with the heart or go to the head. They are not like a clot in an artery. They are slippery like a yoke in a raw egg.
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Re: What does it feel like when DVT becomes PE?
Reply #8 by Alison
Posted: December 7, 2010 at 14:46
I had this very thing last week. Started with a pain in calf following a long haul flight but after a couple of days that went (and I just assumed it was a muscle strain). Then started to get pain in my chest but I had had a bad cold and cough and thought the cough had turned into a chest infection. Went to GP to get some antibiotics and that's how it was diagnosed (after several trips to hospital) but within 12 hours of my visit to the GP the pain was much worse and it felt like someone had broken all my ribs. It hurt to breathe and to cough and I was short of breath. It took a blood test, an ultrasound scan, a chest xray (all of them clear) and finally a CT scan to detect it.
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Re: What does it feel like when DVT becomes PE?
Reply #9 by Lynda
Posted: December 8, 2010 at 14:52
Both of mine were completely different:
First one, just felt light headed and I could actually feel like a "wave" coming up the body. I know that sounds weird. I blacked out for a moment. Evidently these were small clots traveling to the lungs.

Second one was much worse. Woke up very short of breath. Was out of breath just walking to bathroom. By the time I walked into ER, could not even talk. I had a saddle embolus. This was a much bigger clot.

I now have a filter but this last May, was off Coumadin for a month (never do that again) and clotted within the filter and all in the pelvic veins down to the thigh. No PE though thanks to my filter.
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Re: What does it feel like when DVT becomes PE?
Reply #10 by Lynda
Posted: December 8, 2010 at 14:56
Both of mine were completely different:
First one, just felt light headed and I could actually feel like a "wave" coming up the body. I know that sounds weird. I blacked out for a moment. Evidently these were small clots traveling to the lungs.

Second one was much worse. Woke up very short of breath. Was out of breath just walking to bathroom. By the time I walked into ER, could not even talk. I had a saddle embolus. This was a much bigger clot.

I now have a filter but this last May, was off Coumadin for a month (never do that again) and clotted within the filter and all in the pelvic veins down to the thigh. No PE though thanks to my filter.
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Re: What does it feel like when DVT becomes PE?
Reply #11 by Lisa
Posted: May 28, 2011 at 05:01
On a business trip, the day after a short flight, I had an uneasy feeling in my chest which I thought was nervousness. That afternoon a short walk made me feel "really out of shape"(I exercise regularly - jogging, walking, cycling, swimming, tennis etc) so this was my take on what the doctors call "short of breath". That evening I had horrible, stabbing pain in my right side/back and went to the ER. Misdiagnosed until I returned home when a CT scan 6 days after the event showed blood clots in both of my lungs. The horrible stabbing pain was a pulmonary infarction. After the pain subsided I could not take deep breaths in, could not expand my lungs enough to yawn.
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Re: What does it feel like when DVT becomes PE?
Reply #12 by Jane
Posted: April 11, 2012 at 02:34
I had no chest pain or shortness of breath whatsoever just searing pain in my left
calf and was sent for ultrasound and revealed a clot. Went straight to hospital
emergency. Still no breathing problems. This was may 2010. Turns out I had 8
PEs in my lungs. So the only indication I ever had of PEs was my leg clot pain.
Unusual. So every time I have breathing probs or chest pain My doc sends me
back to hospital because of my DVT/PE history. (we have a good public health
system here in australia) Just got out of hospital after an overnight stay last night
as having trouble breathing. Dr convinced me not to have CT to check for PEs
because of high levels of radiation. Have had 2in 15 months. Just had ultrasound
this time to check for clot but that doesn't pick up anything above my legs in the
abdomen. So fingers crossed my breathing is related to the viral infection the
doctor thinks I have and not PEs. I am working out how to live with this like other
people. I am sure you will too. My story is just a little different to others so
thought it worth telling. I too don't know what PE chest pain is like as I've never
had it.
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Re: What does it feel like when DVT becomes PE?
Reply #13 by Joe
Posted: May 16, 2012 at 21:10
I had 3 small PE's in my right side. Woke up in the middle of the night with some back pain/tightness. Was sleeping on the couch though, so thought it had something to do with that. The tightness persisted all day, but was not painful enough for me to think it was serious. Eventually, I got paranoid and called the doctor, who also thought I was paranoid, but sent me to the ER just in case. Lo and behold, CAT scan was positive. Later that night the pain got much worse and I was unable to take in full breaths (after they had put me on a heparin IV).

Better safe than sorry!
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Re: What does it feel like when DVT becomes PE?
Reply #14 by Bawti
Posted: May 20, 2012 at 09:31
My husband had torn knee cartilage in his right knee. He had minor knee surgery to shave off the torn piece. After the surgery, he experienced knee pain, and several days later redness in the shin and calf. He also developed symptoms similar to that of a cold/lung infection/pneumonia. Finally, after deteriorating for three weeks, he went to the emergency department at the hospital. His knee was still hurting but his lungs were so congested that he was certain he had pneumonia. Guess what? He was FULL of blood clots that originated from DVT as a result of his minor knee surgery. The D-Dimer test is important as the results showed his clot saturation to be 4000+. A standard reading is usually around 100 or less. The staff started stuffing warfarin (coumadin) into him and heparin shots in the abdomen to start combating the clots. The heparin starts weakening the clots immediately, where as the warfarin takes days to build up in your system. As others have mentioned above, he needed to be between 2 and 3 for an INR reading and would require the heparin shots daily until the warfarin was on board in his system. His condition worsened within 12 hours as the clots were on the move. Not only did he have a saturation of clots in his body, but he also had 3 submassive clots develop, one behind his right knee, and two in his lungs. They started to move and he became consumed with extreme pain. One of the clots traveled through his heart, into the renal artery causing a blockage resulting in killing 50% of the kidney. Another clot later traveled through his heart and killed off part of his spleen. Clots also traveled through his heart, through the brain and caused temporary vision loss also in the left eye. How the hell did this happen you ask?? We eventually discovered through a battery of tests that he had a hole in his heart. Everyone is born with a hole in their heart. 75% of the population will have the body self repair and close the hole while 25% of the population will carry on with their lives completely unaware that this hole exists. The one true test that confirmed this hole was the TEE test. It is a nasty one that involved a mild sedation, some numbing throat spray, a bubble study, and a team of about 7 people surrounding his hospital bed. They inject a saline bubble into the veins and then watch it on a special monitor that reveals the ultrasound of the heart. If the bubble is seen passing from one ventricle to the next, it is a visual confirmation of that hole. Confirmed! He was booked for heart surgery. He had a plug inserted into the artery of his groin, and was pushed up into the heart. Once there, they open it up like an umbrella, secure it, which then seals off the hole in the heart. He ended up being in the hospital for a month in total. He did have a serious episode of pain 2 months following this procedure and we are getting more tests to make sure the plug is still in place. He remains on warfarin. 50yrs
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Re: What does it feel like when DVT becomes PE?
Reply #15 by Kelly
Posted: May 23, 2013 at 23:56
I was very winded short of breath dizzy massive headache it also hurt to breathe
or take deep breathe very fast pulse 158 and high Bo
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Re: What does it feel like when DVT becomes PE?
Reply #16 by Suzy
Posted: April 23, 2014 at 19:31
My description is apparently the same as many others; not just dizzy or light
headed but rather an out of body/ floating/ dreaming sensation. Plus, of course,
fatigue etc. certainly the instinctive feeling that something is not right. Had never
felt quite like that before, even though I've had both TIA and syncope.
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