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 New to the Coumadin diet.

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wendy

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Posts : 4
Join date : 2008-07-14
Age : 42
Location : Vail, Colorado

PostSubject: New to the Coumadin diet.   Mon Jul 14, 2008 5:26 pm

Hi! Just wanted to introduce myself. My name is Wendy, 33 female, living in Colorado.
I was recently diagnosed with have Factor V Leiden along with Lupis Anticoagulation. I am living in some denial...I had more blood work done with a second doc for a second opinion. Hoping all the doc up here are wrong, but with the extensive DVT that I have, I most likely have these lovely two blood disorders. I am a very active person- snowboarding more than a 100 days in the winter time and I downhill mountain bike, which is riding up on the ski lift with my 50lbs bike and descenting down the mountain in head to toe body armor. Some people call it a very dangerous sport. I call it fun!!
To start at the beginning of this wonderful journey...April 1 I hit a tree snowboarding, wrapping my leg around it. Went to the dr that day and was told it was to swollen to tell what was going on, come back in a week. I waited a week like a good little patient. The leg was more painful and more swollen. Had an MRI and x-rays which just showed a grade 2 tear in the knee and a deeply bruised nerve. No big deal. Recovery time just a few weeks. I was told to come back in three weeks. As the days past my pain increased. The most painful thing I have been thru. The swelling started at my knee went down to my ankle, then up my thigh. At this time I thought I was going crazy from the nerve meds I was on. I stopped taking the meds just in time to realize there was something growing in my body. The pain and swelling continued to go thru the lower part of my body and into my good leg. Twenty-five days after the tree accident I called the dr insisting that something was terribly wrong and needed to be seen. I was seen that afternoon.
The dr saw me for about 5 minutes and thought that I had a blood clot, but he explained to me that clots "don't move like that". Minutes later I was seeing the extensive DVT that ran thru both legs on the computer screen. Crying about how I just bought a new Downhill bike and wouldn't be able to race this summer, not knowing what was about to be my reality. I was told that I would be spending a few days in the hospital, and that they needed to do a CAT scan. I assured them that it wasn't need. Thank God they didn't listen to me. The CAT showed that I had 7 PE's in my right lung and one in my left lung. Shocked at the news, I sat in my hospital bed, in my disposable under wear, trying to figure out how to tell my family. They live 900 miles away. Thank God for my wonderful family, they dropped everything and drove 900 miles that night and was there the next morning at my bed side. Thankfully the dr waited until my family was there to tell me about the blood disorders.
My mom stayed with me for three weeks. I was pretty pathetic...using a walker and hooked up to oxygen. It has been a hard road to recovery. I am glad to have found this web site and all the wonderful people. Will continue my drama filled story later.

Wendy
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dero
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Posts : 904
Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: New to the Coumadin diet.   Mon Jul 14, 2008 7:18 pm

I Wendy,

Wow, I hear exactly what you mean by fun... I had been riding XC for 10 years prior to my battle with DVT, I have never competed because of my work schedule, I would only be available fortraining and races in the begining of july, kind of late, if you want to accumulate points if you ask me, but, I could had been a contender LOL. That's the thing with DVT it does not matter what disipline you come from, it can wreck it for you. I hate to sound negative but for me it has been two seasons that I have not been in the saddle, Sharon from the equestrian world has been throught the same thing she actually has sold some horses, meanwhile Tom is still riding XC but not competing anymore and Joe(yes, he's a roady) just did a Century not too long ago.
DVT is different for everybody and the meds react differently for everybody also. I think we have a very diversified group that I think we can help you.
I won't lie to you, it won't be easy to get back up that hill, compare it to walking your ride up hill in the Rock Garden at Mount Snow. (If you know the NORBA circuit)
SO Wendy, welcome to "Life After DVT", a place that none of us want to be at, but it grows on us...
Don't be shy, if you have questions, ASK, some here have or are going through rought times just like you and we are SURVIVOR of this battle.

dero
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brendablackburn

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Join date : 2008-06-24
Age : 50
Location : Vancouver, BC, Canada

PostSubject: Re: New to the Coumadin diet.   Mon Jul 14, 2008 11:49 pm

Hi Wendy,

Thanks for the pm... gosh I had so many questions, so I came to see if you had added your story, so I didn't ask what you'd already written. Good to see your post here!

So sorry to hear about your DVT journey. Wow--sounds like a massive ordeal, and you have been through a lot. Glad you're here! There are some amazing, supportive and compassionate people here who can all relate on many different levels.

I can't believe the Dr. told you DVT doesn't move that way. What the heck? It obviously did!! I met a girl in the outpatient dvt program at the hospital here, who had dvt in her stomach of all places. So I guess the Dr.s shouldn't make comments & judgements about how we feel before checking things out more thoroughly!!!

So many clots... man oh man. I see that you were on oxygen too... I can't imagine how having that many PEs would feel. I really have compassion for you.

So it all started April... how are you doing today?

I'm glad you have made it through and are here to share your story!! cheers
Look forward to more chats and hearing updates on how you're doing.
Stay strong and have a great day,
Brenda
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RetiredNavy02

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Join date : 2008-03-03
Age : 53
Location : Connecticut

PostSubject: Re: New to the Coumadin diet.   Tue Jul 15, 2008 9:36 am

Wendy,

As a fellow MTB'er I can related to your story. I had my first DVT/PE back in 1992 shortly after a race up at Mount Snow in Vermont. In 1995 I had my second DVT (opposite leg). This happened during a race up at Sugarloaf Maine. My DVT's didn't stop my MTB riding. I know longer race (getting old and out of shape for it) but still enjoy hammering the trials.

if you email me through this website, I can put you in touch with a person in the Denver area who is on the Board of Directors for the National Alliance for Thrombosis and Thrombophilia (NATT). You can find out more about this organization through www.stoptheclot.org or www.nattinfo.org . Lynn Levitt, the person I'm referring to, has been highly active in helping to raise awareness in Colorado.
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wendy

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Join date : 2008-07-14
Age : 42
Location : Vail, Colorado

PostSubject: Re: New to the Coumadin diet.   Mon Mar 02, 2009 2:28 pm

I just wanted to say Hi to all my fellow clotters. I haven't really been on this site for a while. Update on my legs. One legs is almost normal the other problem legs swells leaving me with kankles ,swollen thigh and a fat ass on one side. At time my lungs hurt, but not as bad as some of my fellow clotters.

I have been religious about excercising. Smowboarding 6 times a week with a 30 minute hike thrown it. I have also started acupuncture which helps with the pain ,swelling and heaviness.

Any ways this month I am doing much better...finally in my normal size pants. yeah! Happy that I am a live and doing what I love to do.

P/s I have 72 days of snowboarding in this winter...Doctors dont always know what they are talking about.
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