Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
After 6 weeks of knowing I was positive for something I finally found out today what caused my clot. I have prothrombin mutation factor 2. May as well be a foreign language to me! The haematologist said I was the first person to ever say to him that she was happy to be staying on warfarin.
After almost dying then I say anything that gives me the best chance of staying healthy can only be a blessing!
So I feel like 1 chapter has now closed and the rest of the book is starting :o) I hope you're all well
Karen xx
After almost dying then I say anything that gives me the best chance of staying healthy can only be a blessing!
So I feel like 1 chapter has now closed and the rest of the book is starting :o) I hope you're all well
Karen xx
Here is some information written by two friends of mine regarding Prothrombin Mutation Factor II Mutation:
http://circ.ahajournals.org/cgi/content/full/110/3/e15
Did the doctor tell you if you were homozgyous (two genes) or heterozygous (one gene) for this clotting disorder (thrombophilia)?
Thanks for the link RetiredNavy, yes he said I am heterozygous. My sister has been tested and waiting for her results and they are writing to my parents to offer them testing too.
I had several miscarriages in my 20's and it's good to now know it wasn't my fault or something I did. I don't think the knowledge was there 18 years ago.
They've said they won't test me for lupus now as it means coming off warfarin to go onto heparin and the treatment would be the same anyway. Least I escaped without being bled today!
Karen xx
Back in 1994 Factor V Leiden was first discovered. It wasn't being researched here in the U.S. until 1995. I was diagnosed in 1996 with it.
Back then, the knowledge of Factor V Leiden was not greatly known. I was diagnosed by Harvard Medical School in Boston. Here in Connecticut, not a lot of physicians knew about it, slowly I become more knowledgeable then most physicians. Even today, there is a lack of thrombophilia specialists here in the U.S.. A lot of physicians may know about FVL (or any other thrombophilia) but do not truly understand the protocol of treatment that needs to be taken.
Factor II Mutation was discovered in 1996.
Here are several links where you can find resources about Prothrombin/Factor II Mutation:
www.stoptheclot.org - a U.S. based patient organization created to raise awareness about blood clots and blood clotting disorders. Many of the top researchers/physicians in the thrombophilia community work with this organization.
http://www.thrombosis-charity.org.uk/cms/index.php - A UK based thrombosis organization.
Regards,
Tom
well that makes two of us.... I have the prothrmbin factor 2 mutation and I understand the sense of relief almost that comes with the diagnosis. I'm on warfarin too long term and the reasoning why it happened was reassuring for me too - am someway into my new book now (2 years) but doing ok - keep well
So good to hear you're 2 years through it, Mutti :o)Does the memory of the clot fade? Although I'm relieved to have the reason, I still relive the night a lot. I start some cognitive behaviour therapy next month which I'm also hoping will help
Karen xx
That's really great news that you now know that you have a clotting disorder. I had thrombophilia testing after my first DVT/PE episode and that came back negative. However, the drs did say that it was only negative for the disorders they knew about and that there were plenty more that they don't know about or don't test for. It must be quite a relieve finding out why you are prone to this and I'm really pleased that you are taking this so positively.
Take care.
Kazza
I think it does fade yes.... that's not to say I don't have my moments but generally I try to put it into perspective, give myself a little time and take it from there. I try and keep informed (and not frightened) by staying on the forums, learning from others and recognising that for many people there are conditions that can't be helped by medication. So I accept the warfarin and try not to get too obsessed about the what ifs.. I totally know where you are coming from and I think the therapy will help - I went to a couple of counselling sesions in the immediate aftermath of my hospitilisation I just needed to park some of the shock and upset. Good luck with it Sue x
At least now you have an answer, you can hopefully move on and enjoy life again! I'm so pleased that you can finally close this chapter and move forward!
Love and kisses x x x
HUGS
Ferr
I was told the same as you Kazza, there will be many other mutations they don't know about yet, I'm just lucky? enough to have one they do know about.
Thanks for the encouragement Sue, I'm sure I'll be much better after talking it through with the counsellor.
Aww Loveheart *hugs* thanks so much for all your support! I hope you get your answers soon too xx
Lol Ferr @ being cautious! I have to admit I am the clumsiest woman ever. I trip over fresh air and was always getting scraped knees etc. Now I am so slow partly through the breathing but also trying to make sure I stay on my feet!!
Oh god yes, I needed to know what was wrong no matter if I was on the right treatment or not.
Thanks to all of you, I'm so glad I found this site
Karen xx