Pulmonary Embolism Support Group

For now, most people at this stage simply handle their current med doses, visit the dr or anticoagulation clinic as needed, follow a lot of advice, keep an eye on the INR numbers, feel the blessings of slow recovery, get back on their feet, and wait.

The white-coat guy who most "turned on the lights" for me was the hematologist, but I was not slated to see one until 10 months out while still on initial anticoagulation therapy.

You mention that some tests have been done, but I would say compare the tests done to the list at http://www.fvleiden.org/recently-d... .
Tests for specific genetic mutations are sometimes expensive and very specific. In my case the hematologist was able to pinpoiont Factor V Leiden mutation, which is fairly common in the white population.

Usually, but not always, PE originates from thrombi elsewhere. It may or may not come to light if that is so in this case, or even from where exactly.

Athleticism does not in itself cause people to drop from PE left and right, but some of the physiological implications of a long-term elite distance athlete lifestyle can contribute to clot formation on a rare opportunistic basis. Some specific links include....
http://www.stoptheclot.org/News/ar...
http://www.airhealth.org/athletes....
http://blog.garymoller.com/2008/01...

Even with all that in mind, I have chosen to continue an active lifestyle if only to rebuild and maintain lung capacity. It may have contributed to the condition, or to the survival, or both.

Welcome to this group, as much as we all wish no one ever had to be here.

Your husband is very blessed to have a great wife who is willing to do research for him. I had my PE in June 2008- one year ago. I had no pre-existing factors, I'm 45 years old and lived a healthy lifestyle. I have been on coumadin for the last year. I have always been athletic and did a lot of cardio, as well as stregnth training. I've done that for years and believe strongly that there is no correlation between the two.

My doctor's did NOT find evidence of a DVT, but I have had deep leg pain for the past few years with no signs of DVT in multiple ultraounds. There are so many factors and I believe that I probably wasn't tested for all the genetic clotting disorder tests which will be done at the end of the summer when I get my system cleared of all coumadin.

I was tested in the hospital for most tests, but they also didn't do a few because they were cutting costs/corners and didn't think some were necessary. I have a gret hemotologist that will be doing a huge screening panel to see if he can find the missing puzzle re: genetic clotting disorders, but I know he might not find anything. That being said..... I have to take it one day at a time and be content that they may never figure out why I clotted.
I am reminded each day to thank GOD I am alive and continue to do what my doctor's advise me regarding my recovery. Hope this might help a bit! :)

I had my PE in March and like your husband I have absolutely no risk factors. I am 32 years old. My first hematologist basically saw me in the hospital and after for some follow up but came across as though he was wiping his hands of me b/c nothing came out shouting "I am the answer". I recently switched to a hematologist who specializes in anticoagulation...this is who you need to see!!! Most hematologists are also oncologists and most of their training is in oncology and not blood disorders. You need to find one who specializes in Blood Disorders. Check with your nearest major medical center to see if they have a Blood Disorders Center/Clinic. Look at dr profiles and see if anyone has a specialty. My new hematologist is amazing and I wish I saw him sooner. I have been told by many that they may never find a cause for my PE but I refuse to give up...that led me to my dr and it looks like I may have a blood disorder. And my original tests said no blood disorder. The tests my new dr took weeks to get results back.
I hope this may have helped you some. I am still dealing with a lot of this myself and may appear rambling b/c of it. I hope your husband and you get some peace! good luck!

thank you more2be.. the links were great!

thank you alexandra .. yes one day at a time...

and thank you Paula - please do keep me posted if they do find anything...

today I am thankful for your support and that I have my husband and my kids have a father... ....lord knows my kids need a father right now and he is committed to sticking himself with a needle for another few days as his INR levels are still to low.

thanks!!

HI I didn't know what caused my PE until I got my genetic testing back.
If he is still having breathing problems, than a pulmonologist would be appropriate. I would say a hematologist should be on the referral list. Is he feeling OK yet? Sometimes it is just a waiting game to see how things unfold. Continue to advocate for him -as there are lots of different doctors with lots of different opinions out there. Do your homework,have a list of questions ready, and don't be afraid to keep asking until it makes sense or go somewhere else. I have had many mistakes made in my care-and I am a nurse. Please let us know how he is fairing, and you as well. It is refreshing to see a spouse supporting their significant other in this way. Blessings, Teri

Hi

Never like to say welcome but am glad that you found this site as its been no end of support for me.

I had my PE in March 2008. There were mutiple bilateral clots but I feel lucky that they were diagnosed and treated quickly.

They have never found any cause either genetic or increased risk factors. I wasnt even on BC.

If I were you I would find a good heamatologist. It took me a while as in the UK its harder to pick and choose but it can be done and eventually got to see mine who is in a thrombosis centre and so an 'expert'.

He has recommended that I stay on warfarin long term as unprovoked PE (one for which a cause is not found) puts you at an increased risk for another. This is a =ccording to the American College of Chest Pysicians guidelines.

Hope this helps and I wish your husband all the best

Kate x

Pam,

Being a fellow New Englander, if you need help finding a specialist, please let me know. The two that come to mind which are in the New England area are:

Dr. Mary Cushman
Fletcher Allen Health Care, Thrombosis and Hemostasis Program, Hematology/Oncology Clinic, 111 Colchester Avenue, Burlington, VT 05401, USA
Phone #: (802) 847-4925 Fax #: (802) 847-1258

and the other is my good friend

Dr.Sam Goldhaber
Brigham and Women's Hospital, Cardiovascular Division
75 Francis Street
Boston, MA 02115
Phone: (857) 307-1932

Both physicians are some of top specialist in this country and on the forefront of research.

Just as a question regarding your husbands workout routine, did it involve a lot of upper body weight lifting? Upper extremety clots could be a possible problem:

http://www.fvleiden.org/ask/68.html

And of course as more2be has mentioned, ruling out the various clotting disorder whenever an unexplained PE or DVT takes places would be appropriate.

Regards,
Tom in Connecticut

My husband had a saddle pe and dvt in his leg, he is 40. this was diagnosied 5/22/09. he has never found the cause either. nothing genetic, no long trips, etc. What is strange is both myslef and our daughter has the gene factors. (we were tested several years ago after my 14 y/o niece passed away from pulmonary embolisms) I was sure they would find he also had the gene. I guess he should just continue to remain active and try to stay healthy. I know the not knowing why, can be frustating.

One of our valued contributors was in a situation where she appeared to be idiopathic for some time, with recurrent PEs. With persistence she finally got the "a-ha!" as described at http://www.dailystrength.org/c/Pul... .

That would be but one of many examples of the thing coming from somewhat un-ordinary means.