Factor V Leiden Support Community Group

This is a group for anyone who has Factor V Leiden, a clotting disorder. Or people who know someone with this condition.

24 Members

50 Posts

0 Online

Urlacher 04/14/2009

I am a new member and really dont know how this all works but I am begining to feel not so alone about this disorder.I was stunned to hear that I had this,reading some of the comments people left makes me feel like I am not the only one out there.What I am surprised about is that there is not more of us out there.I have had 6 major back surgeries and made it back to work each time.Being filled in by the doctors about what limitations there is was really scary and I thought this time would be the end of my career.I am not going to give up and I will return to work,but I am really scared about what FVL means to my future,will I be able to live a normal life.My back surgeries has made my life nothing but hectic ,learning how to cope with it has taken me along time to lets say feel like I had some control.Now I have something only 5 percent of all people in North America have Iam glad that I have found this group even if I dont get any responces it lets you feel some kind of hope that maybe someone out there will reply but if nobody does you still were able to burn some feelings out in the open.My typing and grammar are really bad please forgive me I am a blue collar worker great with math but terrible with keyboards and grammar.I hope I could get a response Factor V Leiden is something I was just diagnosed with 5 weeks ago and I hope thru this Suppot group I can learn more about this disorder and maybe help someone along the way.My pain from the Pulminory Embolism is a very slow process my left ribcage still hurts and I cannot lay down yet to sleep,certain movements are still hard to make I pray every day it will better faster than it is but I realize by now nothing from this point on will be easy .Thank You for your time GO BLACKHAWKS

RetiredNavy02 04/16/2009

Welcome to the group!

First off, having FVL is not the end all. I was diagnosed back in 1996 as being homozgyous. In 1992 I had suffered my first DVT/PE, then again a DVT in 1995. I am currently on life-long Coumadin treatment.

Here are two website I strongly recommend. The first website belongs to a Patient Advocacy Organization made up of DVT/PE patients. This organization works with the U.S. Centers for Disease Control and Prevention (CDC) to raise awareness. They also have created several Chapters to better help patients. Their website is located at www.stoptheclot.org

Another website belongs to my good friend, Deb Smith of California. Deb started the fvleiden.org website back in 1998 after another web group we both belonged to went off-line. She is a pioneer of blood clot and clotting disorder Patient Advocacy. She also has an "Ask the Doctor" section on her website where another good friend of mine, Dr. Stephan Moll, answers questions to some of the more common questions.

As far as recovery, it does get better as time goes along. Just keep this in mind. When I had my DVT/PE back in 1992, I was told I was lucky to be alive and probably would never regain full use of my leg. I raced Mountain Bikes at the amature level and from 1993 to 1995 I had a very successful career. Yes my leg still swells up during to Post Thrombotic Syndrome, but it has not affected my quality of life.

Feel free to ask any specific question you may have.

Urlacher 04/22/2009

Thank you for your reply I have visited both sites alot of very good info.You said you had another DVT/PE in 1995.Did they tell you what was the cause of the second one.was it FVL that caused it and were you on coumadin during those 3 years.Our you surprised there is not more discussions on the FVL support group or is more people chatting on th PE support group.I myself was able to once throw a 90 MPH fastball.After 6 back surgeries I was able to return to what I would call a quality life but most would say it was really nothing .Physical activity was normal,but I was never able to throw a baseball like I used to.I was never able to ride my mountain bike due to a pacemaker with 18 gauge surgical wires in my back.In Chicago believe it or not there is alot of forest preserves with trails so I real miss that.Some day I hope to ride again.Do you think there are more FVL people out there or are they chatting in different groups I sort of feel alone,but happy I found this website.It has made me feel somewhat comfortable there is somebody with FVL listening and who cares.Good luck with your biking.I once worked at the Great Lakes Naval Base in ILLINOIS only about 20 miles from my current home.Amazing facility!Have you heard of it I see your retired and thought I would ask.Thank you for your time dedicated to our country.I believe not enough is done to help our veterans.I also do alot of work in the V.A. hospitals and hear alot of storys I salute to you and all who have served.

RetiredNavy02 04/22/2009

Both clotting episodes were the result of being homozygous for FVL and having elevated homocysteine levels.

A lot of the FVL folks are on the FVL support group site here at dailystrength.

I went to boot camp at Great Lakes back in 1982. I didn't get a lot of time to visit the area, though I wish I did.

Urlacher 04/22/2009

I am sorry you didnt get to see the area if you ever want somewhere to visit Chicago is really one of the best places.The naval base is a town inside itsself really amazing I worked there around 9/11 it was very difficult as you could imagine for a civilian to get in and out.You have mentioned both of your kids in your profile have FVL.Did you get them tested at a early age.Most people have given me different answers due to insurance or family issues.I see their has not been many discussions on the FVL group other than me and you over the last few months thats why I asked.It looks like most people use the PE site. Being a new member I am just learning I hope I have not babled to much thanks.

RetiredNavy02 04/23/2009

Here is good guidance regarding testing:

http://fvleiden.org/ask/40.html

We have both of our children tested. We knew they would be heterozygous for FVL but when we found out my wife's side of the family had hemophilia we thought it would be best to rule out any other disorders.

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