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Discussion:
How long til blood clots go away?
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I need to vent. I started cleaning my step dads office again today. I used to do it every other Friday before the PE and I just started it back up today. I got there before his secretary left and she said well your clots are for sure gone by now. I was sitting down after I had been cleaning for a while because I had some chest pain. I said well I am only out about 10 weeks out and I don't think they are gone cause I still have severe chest pain. She quickly said well my mom had clots all the time and she just took coumadin and in a few weeks her clots were gone so yours were gone a long time ago. She was very rude and acted like I was making this all up. She had been complaining to my step dad that she had to be doing my work of cleaning while I was gone and that prompted my step dad to call Mayo clinic to find out about Pulmonary Embolisms because she had been telling him I should be perfectly fine by now. Mayo clinic did say exercise is good for me and that cleaning his office would be good so he said I needed to come back. I guess Mayo is right but she was like see I told you she was fine. Now my mom is even saying I should be fine by now and I shouldn't need pain pills anymore and that I must be addicted. I am going through hell and for sure need to call my hematologist to talk to him about all this. SO what do you all think? How long does it take for PE's to disintegrate? My family is not helping me and I need people that understand what I'm going through. Am I crazy for having chest pain still? Please help. Thanks
Posted on 06/27/09, 12:18 am
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Reply #1 - 06/27/09  8:30am
" From what I've been reading in the posts, it would seem that it usually takes a long time for these things to resolve. Some of that, of course, depends on the individual, but if you consider how long it takes an injury to your skin to heal completely leaving no trace, it isn't hard to imagine that it might take some time for the resolution of an internal "event."
It is often hard for those around us to understand this, especially when there are no obvious signs like a cast on the arm or a large bandage swaddling your head.
But while the pain may be real and your recovery longer than you'd like, and those in your life may never quite grasp the entirety of your situation (which is one of the things that makes this forum of support so important) you can take comfort in this: your pain will go away and you will get better. "
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Reply #2 - 06/27/09  8:41am
" I can identify in part with what that very rude woman is saying. Obnoxious and simple-minded as she is, she is still partially correct.

Had I been treated correctly when I first went to a doctor with a lesser saphenous superficial vein clot then yes, that clot would have resolved in a matter of days or weeks and nothing more would have needed to be done.

Since I was sent home untreated (superficial clots are not life threatening, they said) and it grew into massive clots through the popiteal, superficial femoral, and the lungs, I have chronic damage and will likely be treated for life. A few weeks made a big difference.

Small clots are a different thing from big streaming clots, the latter of which are associated with hemodynamic collapse and possibly lingering legacies. "
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Reply #3 - 06/27/09  7:59pm
" I am sorry that your family is causing you stress right now...like you don't have enough. As you know, I am 8 weeks out. I do as much physical activty as I can everyday. This weekend I even went hiking! I still take pain meds but not nearly as many...only at night. Everyone is different. Listen to your doctors...not your family. "
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Reply #4 - 06/28/09  12:03am
" dear lovely april- I am so SORRY that you are going thru this. I am one year post left lung PE (with multiple small clots and still to this day experience lung and chest pain) Some doctors jave said it is only stress, but a few of my specialists (pulmonologist and hemo) have said that the smaller clots go into the peripheral parts (the ends) of the lungs and can be longer and more painful because they are nearer to the nerve receptors.

It's so frustrating because the pain always make me think that I might be reclotting, but I have begun to have a new "normal" after having several CT scans come back ok. My clots did not resolve until about three months out..... and I was sleeping propped up on pillows and always experiencing pain after doing too much physical exertion. I used to be very active, but I've had to slow down a LOT to let my lungs heal. the pulmonologist recently reminded me it was ok to take small doses of vicadin and/or tylenol (no motrin because of the risk of bleeding) to alleviate the pain. She wants me to "break" the pain cycle and it's not lingering in my mind. I can't believe your step dad called Mayo Hospital arizona.... let me tell you first hand that they almost sent me home to die because they said I was either having an anxiety attack or pneumonia and no need to keep me. I pleaded with them one year ago and finally they did blood work and admitted me- so I would take Mayo's advice with a grain of salt. They are considered a very reputable hospital in Rochester, MN., but the one here is all about money. I have heard so many horror stories from other people with different ailments. You can print this and show your parents..... Everyone heals differently but you will get better in your own time! :) "
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Reply #5 - 06/28/09  6:44am
" It seems that Mayo only told your family that exercise was good for you. It does not confirm any resolution to the clotting event you have had. The thing about exercise is that you gradually use it to build up you endurance. I used the pool alot to improve my cardiopulmonary endurance and I will be the first to tell you that 10 yrs later I still have to control my breathing going up steps. I had multiple PE diffuse throughout all lung fields. I know the clots have been gone a long time but LAST September I hired a housekeeper for my home as pacing my activities which included lots of bending was so tiring that the house suffered. HOWEVER I still work full time as a nurse in an ICU which is easier on my endurance than cleaning the house.

SO sorry that your family does not understand. I will keep you in my prayers that they see the whole picture. "
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Reply #6 - 06/28/09  11:38am
" It's really terrible that your support system isn't there for you right now, I'm very sorry about that.

But it's unlikely that you still have those same clots as they dissolve very quickly once you're not developing more.

However, that doesn't mean that you shouldn't be experiencing any symptoms anymore! I'm 7 months out and I still get chest pain from time to time, and I'm slowly getting over the shortness of breath and constant fatigue. I had multiple, large, bilateral PEs, my attending doctor at the hospital said he was suprised I was still alive based on the extent of my clotting. Everyone is different, but PEs generally do a number on your body... it's a huge shock for everything especially your heart (which has to pump against a higher pressure) and lungs. It's not all that uncommon for PEs to cause permanent damage to one of those organs. And if there's no permanent damage, there could still be some inflammation, scar tissue, etc.

I do think it's important for you to exercise as that's what helped my shortness of breath fade away -- you have to get your lung capacity back up to normal. But you're only 2.5 months out, there's people on here that didn't go back to work for 6 months. I never stopped going to school (my "job"), but I was miserable doing it and barely passed my classes that semester.

We're some of the healthiest looking sick people out there and some people don't quite get it.

If you'd like, you could do a little online research about the dangers of PEs... my doctor told me that 30% of people with a PE die, 25% of those are instant deaths. They can result in pulmonary hypertension, which can put you on the heart and lung transplant list. Share your research with your family to convey how much danger you were in.

Also, you could tell your hematologist that you're worried that you still have clots and ask for a D-dimer blood test (which I've been told checks for a protein associated with clot disintegration).... if your D-dimer is high, it's possible (not for sure) that you still have clots being broken down.
You should also talk to your doc about chest pain if it's severe. I only continued the pain medicine for a month after my PEs, so if your pain is that bad I think it's important that your doctor be aware and maybe start trying to figure out why. He'll probably send you to a pulmonologist, if you haven't seen one already, for more tests. In particular, I've had a V/Q exam to check that blood flow channels matched the airflow channels in my lungs and also a cardiac echogram to check for high blood pressure in my heart.

Good luck hunny "
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Reply #7 - 06/28/09  4:15pm
" Blue pretty much covered the worse-case (if not worst case) scenarios for the future.

When I was still thinking of PE as something that could resolve completely, my hematologist said in severe cases it took 10 months.

However, there is such a thing as chronic PE, in which the damage is not completely gone. I had chronic PE found in my follow-on scans 11 months and 15 months out, along with evidence of chronic DVT in the affected leg. I've been digging to find out what form this chronic PE takes; whether it is material that lines the vessels or a vessel condition itself, and apparently it has some elements of both. Chronic PE can be removed with risky pulmonary thrombectomy surgery, but that is advisable only in the worst of cases. Chronic PE can be associated with pulmonary hypertension.

What is odd is that in spite of all this I was able to quickly resume and maintain a very high activity level that was my norm for 25 years pre-PE. However, it may never be safe to discontinue anticoagulation therapy. "
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Reply #8 - 06/28/09  4:16pm
" Hi Lovely,
I had a CT scan at four months post diagnosis and it showed that my clots had partially resolved - but only partially! I still had filling defects and definite visible clots in my lungs. So there.
By the way, I don't think your secretary should be sticking her nose in your business. And I also feel that the clinic shouldn't have been talking about your case with your Dad without your consent.
Why don't you tell them all about the risk of pulmonary hypertension and see their reactions once they've googled that one (don't you worry, though, because the risk is very small)? "
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Reply #9 - 06/28/09  4:58pm
" Take a look at the picture of my clots that I have posted. The white clots are OLD and NONE dissolved with any meds they gave me. I was given a choice of going to the Mayo clinic or to UCSD to have them removed, I chose UCSD because the success rate was much better there and the picture is what was removed surgically. My left lung was full, the big clots were as big as my dr.s fist. Only one third of my right lung was supporting my body. It will take you time to heal. Please don't get discouraged. "
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Reply #10 - 06/28/09  6:59pm
" Wow, Rum. That was a lot to have survived.

Knowing the correct acronym now, I googled "PTE surgery" and it led to your post from April 2008 at http://www.dailystrength.org/c/Pulm... . The same post showed that it had been 12 1/2 years since, so obviously 13 3/4 now. That makes many of us relative newcomers. With all the uncertainty about the future, it is good to see a long-term recovery such as yours. "

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