Pumonary Emobolism

[jjob]

My 39 year old husband had an attach of severe chest pains a couple of weeks ago and they found two pulmonary emboli.  He is being treated with Warfarin, and they have been unable to find a specific cause for these clots.  We have been told by his physician that he is now at increased risk for future clotting and that recurrences are more often fatal or debilitating than the initial attack (this is in keeping with some reading I've done).  

My question is whether this increased risk occurs if and when they decide to take him off the Warfarin, or if he's still at risk while taking the medication.  If it occurs only while off the medication, why would he ever want to stop taking it?

Any information about his continued risk factor would be greatly appreciated.  

Thank you.

[Colleen71]

I posted in the "Heart Forum" a couple of weeks ago so I won't go into the long history of things.  In short, I am a 32 year female, who was diagnosed with Pulmonary Embolism back in August with NO predisposing factors.  I had 2 in the left lung and 1 in the right. I am also being treated with Warafin 7.5mg daily and because my INR is still not fully regulated I give myself twice daily injections of Lovenox. I was told my the Specialist that my chances of a recurrance are less than 1%.  However, this Tuesday I am fortunate to have an appointment with a very well known specialist at McMaster University hospital here in Ontario, Canada.  The clinic I am attending deals specifically in Pulmonary Embolism and Thrombosis so it will be nice to get some answers.  From what I've learned, alot of the "chance" of recurrance has to do with lifestyle - is your husband a smoker? Obesity, genetic disorders etc.  I would be happy to ask any generic you may have on the disorder when I attend the clinic.  I already have a list prepared!!

Best of luck to you both!

Colleen
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[Lady Lightbringer]

I'm sorry I missed this when it was first posted...I do hope things are working out all around for you folks..any updates?

I am very curious as I have blood clots in my lungs and have since around May 4, 2002. I am in the ultra-rare category and my body is not reabsorbing them. I will have to go to UCSD in order to have a very in-depth surgery to have the clots removed from my lungs. Scary stuff.

For me, as far as we can tell it was birth control pills that did it. There are so many potential causes though. Just extended car rides, plane rides  or bed rest can do it. Always make sure you move around as often as possible to avoid it happening to you.

And remember..always take shortness of breath seriously, so many people die of this because of missed diagnosis. Fully 30% die in the first hour of presentation. If you have any reason to suspect you might have it, insist on tests. [/lecture] ;)

[todamax48]

Hi: It was a real eye opener to read your imput on blood clots.  I was diagnosed with blood clots in my left leg last week after it swelled to twice it's size without any cause.  Although I have been complaining to my doctor for over a year about fatigue and shortness of breath - no chest xray or other exams were done outside of regular blood tests. I was found to be anemic, so all the symptoms were placed on this condition. My complaint of losing all the feeling and workings of my left side brought an altra sound of my neck ateries as well as CT of my head - I was told it was normal.  This was less than a month ago.

I am now on 2 injections of lovenox and of course warfarin. Thanks to what I read here, I will insist of an inspection of my lungs as well.  

Thanks

[National Jewish]

Whether or not your husband remains at risk while taking Coumadin

[Colleen71]

Hi there!

Visited the PulmonaryEmbolism Specialist yesterday at McMaster University hospital.  I got all good news!  No genetic disorders, the cause of the clots was from being septic with Strep B back in April. I'll be on Warafin for 6 months and after that have a LESS than 5% change of recurrance.  I asked what the chance of fatility would be IF I was one of those 5% and the chance is 5% of that 5% so 0 in all liklihood.  The chances of having a recurrance while being medicated are very very slim.  However this is IF you have no genetic mutations etc.  Smoking also increases the changes of recurrance while being medicated.  Good news all around and needless to say i'd be happy to answer questions for anyone going through this.  Still a worry but what a relief!!

Take care!

Colleen

[jjob]

Hi,

Thanks to you both for your comments.  I am encouraged that you have had no recurrences after your initial clots in 1984 - that is really good news!  I know the odds are good that he will not have future clots while being treated, and I plan to hit the smoking thing with him again this weekend.  I'm not ready to be a widow and raise our young children alone...

Colleen, we are in Seattle, so I may look for a Pulmonologist at the University of Washington Medical Center, as they have a great reputation.

Thanks again for your support - it really is comforting.

[Colleen71]

Hi there.

I will add that question to my list and be sure to post the response I get on Tuesday from the Specialist.  From what I have been told to date if your INR is in the Therapeautic range on Warafin your chances of recurrance are slim to none.

Keep smiling and as I was told "be thankful they caught it before it was to late"  apparently 70% of PE's are misdiagnosed because they present like so many other things. I find this outrageous! Where are you located?

[jjob]

Thanks, Colleen.  I appreciate your comment, and think I read your story in both the Heart and Respiratory forums.  My husband is a smoker, but no one has told us that is a risk factor.  He is now motivated to quit, but it would help to know if it is a possible cause.  The other generic question I have is whether he is at risk when his INR is regulated with warfarin, or does the risk just come back if/when he decides to stop taking the medicine?

Thanks again!

[kellie1]

Hello - I also was diagnosed with clusters of clots in my lungs back in 1984.  They put me on Coumadin and found that mine were due to a genetic blood disorder, a protein deficiency.  I will always have to take Coumadin but I have no problem with it.  Yes, smoking is a definite risk factor and I'm surprised the doctors didn't tell your husband this.  It raises the chances of recurrent clots whether he's on a blood thinner or not, as the smoking will pose the risk of not being able to keep his INR stable, and keeping it stable and in a healthy range is difficult enough.  I get my blood checked every couple of months to be sure it's in the range it's suppose to be, and have really had no problems with it.  You do want to stay away from anything with Vitamin K in it, as it interfers with the effectiveness of the blood thinner.  This would be shellfish (lobster, shrimp, crab, etc) and broccoli.  Mind you, I do still eat these items on occasion when I go out as they're my favorites but not very often, and because I get my blood checked on a regular basis, it poses no problems for me.

Please persuade your husband to quit smoking.  It's not a healthy thing to do anyway, and his health warrants it as clots to the lungs can be potentially fatal.

Take care.