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 Embolism 1.5 years ago, what now?

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debbiemaclean



Posts : 9
Join date : 2008-10-08

PostSubject: Embolism 1.5 years ago, what now?   Tue Feb 17, 2009 12:49 pm

I am (was) a healthy 50 YO female who experienced a SEVERE pulmonary embolism in August 07. I had a pretty severe crush injury to my left knee in 2004 that left the leg somewhat larger. I was flying in/out of Vancouver from Toronto for an Alaskan cruise in 07. Prior to the flight my doctor has given me a one-time Rx for birth-control pills to delay my period for the trip. BIG MISTAKE. During the cruise I was acutely aware that my left leg was swelling with some red streaking and intense pain under my foot. I could barely weight bare. I suspected a serious problem was brewing but tried to ignore the symptoms for fear of being left somewhere up in Alaska. Instinctively I popped lots of aspirin every day on the cruise. I was extremely anxious on the return flight and had some difficulty breathing - maybe an anxiety attack or the start of the PE? I went to the hospital right away once back home and they gave a shot of heparin and said to come back on Monday for ultrasound. I was only home a couple hours when the PE became a life/death emergency. They diagnosed several large bilateral lung clots and I was in intensive/acute cardiac care for 10 days. The episode created some heart enlargement and a couple valve prolapses. These have more/less resolved now. Initially they thought 6 months of coumadin was appropriate, then 9 then a full year. It's now over 18 months and the haematologist feels a year was sufficient and my GP is still hesitant. Perhaps she feels somewhat responsible in the first place for prescribing the birth-control and is overly cautious about stopping the coumadin? I'm on 16 mg now - no one knows why I require such a high dose. I now feel that I need to take the initiative. But I too am afraid. Anyone else had this experience???? Debbie. WWYD?
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dero
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Posts : 904
Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Embolism 1.5 years ago, what now?   Fri Feb 20, 2009 4:04 pm

Hi Debbie, glad you found the place, even if it's NOT under the best circumstances, but here we are...
I know exactly what you mean when you say "am (was) a healthy person" and I have also been at it since the summer of 2007, although for me it was an Idiopathic DVT in my right calf. Many other Dr. are speculating that this DVT may have been the result from an injured
gastronimius muscles which I had strained two weeks prior to my DVT diagnose, but I have learned to trust my hematologist's prognosis.
As for you doing a daily dose of 16mg is not uncommon, some people's system react differently to the meds to have their INR in range.
How is your relationship with your hematologist, can you talk with him/her, tell him/her that you would like a second opinion (this is your life you are dealing with, not your hema) what hospital in the GTA have you been dealing with? Tell your Hematologist what your GP told you and talk about that, see what he/she has to say...
That is WIWD...
Pretty soon I will be dealing with going off the meds, in a way, yes I am nervous, but on the other hand, this will mean that I will be able to go back to a healthier lifestyle, one I miss.
I say this now, but time will tell...
Be well, Denis.
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debbiemaclean



Posts : 9
Join date : 2008-10-08

PostSubject: Re: Embolism 1.5 years ago, what now?   Fri Feb 20, 2009 9:15 pm

Hello Dero: I have actually read your site for a while; there was a write-up in a magazine (maybe published by our hospital in Newmarket) - it mentioned your site and I have found it to be helpful. Now I am at a crossroad to end coumadin or not. (My GP didn't see a downside of continuing the coumadin, but we live on a horse-breeding farm and risk of injury by kick or cut is high so I'd say that is a negative!) My dilemna was that the hematologist saw me in the hospital and again 4 months after and made the decision to continue the 1 year Rx. Today the hematologist does not want to see me until AFTER I'm off the coumadin and have done the 3 blood tests (Protein S,C and antiphospholipid AB). But still the GP wasn't prepared to make the decision to stop. Funnily, I received a call this week from the spec (the 2 docs consulted by phone) saying to STOP the coumadin for 7 days, do the 3 blood tests, and then resume the normal dose. This seems reasonable to me. (But I am wearing the compression hose during this "exposed" period - maybe paranoid?! Are there further recommended bloodtests? My daughters would benefit knowing if there is a genetic component - especially since one is pregnant.
Thank you for your input. Debbie.
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jennbuckley



Posts : 3
Join date : 2010-03-03

PostSubject: Re: Embolism 1.5 years ago, what now?   Wed Mar 03, 2010 6:54 pm

Debbie,
I experienced a DVT/PE 1+ years ago after my daughter's birth. I was only on Coumadin for 9mths. I was taken off to retest my blood for genetic mutations. My hematologist wanted to put me back on for the remainder of a year, but decided that working back on it after being off would out-weigh the advantages of finishing off the full year. I am very glad to be off the Coumadin. However, I have been told that if I ever have a reoccurence, Coumadin will be life-long.
Your children definately need to be tested, especially the pregnant one. If she has clotting tendencies, they need to put her on heparin shots.
I almost lost my daughter at 10 weeks, related to a bleeding episode. I didn't know about my clotting disorder at that time, but it was probably related.
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