Pulmonary Embolism Support Group

Katy,

Have your seen a thrombophilia (blood clot disorder) specialist? Seeing that you have had multiple PE's, unless they absolutely know the cause, and even then, I would definitely seek a one to rule out any clotting disorders.

Keep in mind, not all doctors (in fact most doctors) are not really that up to date on treatment of blood clots. This includes Cardiologist, Hematologists, and Pulmonary doctors. Though I agree, being that you had a PE, a Pulmonary specialists is worth seeing, I would also seeks a thrombophilia specialist. Most of these are Hematologists. Any healthcare provider can manage your treatment, but it's imperative to find out why you developed the clot to begin with and to rule out any known clotting disorders (which may or may not extend your length of anticoagulant treatment).

If in the US., if you let me know a city/state I can point you in the right direction. You can also look here:

http://www.stoptheclot.org/learn_m...

I am 7 months out from my PE (and infarction) and never saw a specialist. Everything was managed by my PCP and my INR was either checked by my PCP or the anti-coag clinic. I also never had a follow-up CT scan after the initial one. I went off warfarin a month ago and my PCP has put me on aspirin for life. I went in for a battery of bloodwork today so I should know soon if I have a clotting disorder.

While I trust my PCP, I would have preferred to have seen a specialist at some point during this whole ordeal. It would have put my mind at ease a bit more.

RetiredNavy02--They are pretty sure my PE was caused by a DVT that was due to using the ortho evra birth control patch. (They did not CT scan my leg, but they seem pretty convinced. To clarify, I currently have clots and infartions in both lungs. Its only been one incident, so far. I was told that once I'm off coumadin they will run the blood work to see if there is any genetic disorders. Nothing runs in the family, but I guess you never do know for sure.

Thanks for the info,
Katy

I was seeing a pulmonologist, cardiologist and GP. The first 2 have done follow ups but since I am 3 months out, they have theGP running the show and they check up on me. I'm due to see the pulmonologist in 6 mo and cardi in 12 barring any new complications. Good luck.

Well I was not refered to a Hematologist either,I just did it on my own.I just felt I needed to really understand what happened ,and my Primary is great but not a specialist....Good luck,,,This is a great site to get info and support.

A hematologist is, in fact, teh specialist of choice in most cases. My hematologist made more sense of all the events than all other medical pros combined.
As for nothing running in the family, nothing of the sort appeared to run in mine either, but with at least some genetic mutations (e.g.. FVL) the overwhelming majority of carriers never see ill effects.
Your tests can refute or affirm any preexisting dispositions.
http://www.fvleiden.org/recently-d...

Unfortunately for me, my GP is pretty worthless on this issue and frankly didn't want to treat me. My pulmonologist is running the show as far as treatment and when to go off coumadin. My hematologist provided the protocol (6 months, D Dimer before and after going off). The plumonologist also wants a follow up CT.

I also haven't received adequit care. They referred me to a brand new primary care provider who's a NP, and i see them for the very first time monday. that's three weeks since i was in the hospital with multiple PE in my left lung and also lung infarction. The acc unit calls every two to three days when i do my blood draws, and my CNM has called concerning the obgyn aspect of my issues. But i really wish i had a specialist, someone who was coordinating my care and could explain the pain and offer better explanations. They sort of treat me like i'm crazy because i've lost almost 20lbs and am still in pain.