July 7, 2008 was a real surprise for me, after a simple procedure on July 2, I was in terrible pain in my right leg and mostly unable to walk. Ended up with and extensive DVT from the groin to the back of my calf. They tell me it will be that way the rest of my life. I am on Warfarin and using the compression stocking religiously (but it sure is ugly). But exercise is still scary for me...........I would love to go back to horse back riding......I know the dangers of being thrown or kicked...and that is what is keeping me from doing it. I will be on Warfarin until I go back to the thromobosis clinic in June 2010.........what I have started using is a CHI machine which has greatly reduced the swelling in the leg and the redness in the ankle area. What other exercises are "safe"? Also, what ARE the side effects of Warfarin, ask the Dr. in Ottawa and the answer is bleeding........but there MUST be other side effects??

Any advice and answers would be greatly appreciated.........Lori

First off, Lori, welcome to Life After DVT, hope we can provide help and answers .
You ended up in the Thrombosis Assessment and Treatment unit at the Civic campus, Parkdale Building, fourth floor, either seeing Dr. Forgie, Dr. Wells, or Dr. Rodgers or Dr. Gonzales (how am I doing so far?)That's where I have been going since I was diagnosed in July 07. Dr. Forgie is my Hemotologist and I have nothing but accolades for her...
One question, you mentioned that your next visit at the TAT Unit is in June 2010, are you sure it's not 2009? It seems to be a long time between appt.
Another question, what is a CHI machine?
Ok, my turn to answer questions, the side effects from warfarin:
(BTW, your answer sounds like something Dr. Wells would answer.)
-Always tired
-Mind fog,meaning you have to really concentrate on things that normally comes w/o hesitation.
-Amplification of your emotions. You'll find yourself getting irritated by nothing, start crying for nothing...
these are a few I experience myself
I have heard of thinning of hair, always cold, bleeding of the gums when brushing your teeth.
As for the exercises, since it has been almost been a year since your diagnose, you don't have to worry of dislodging the clot and creating a PE. Try some out and see how your body react to it.
How are your INRs?
If you have any other question don't hesitate, ASK, there are no stupid questions.

How clever you are......and correct, Dr. Wells is my Dr. at the Civic....his answers are sometimes (I feel) a brush off, especially when he told me "bummer" that the clot was so extensive and going to be there the rest of my life.....but never the less he knows what he is doing. I recognize those side effects. I am not going to see Dr. Wells until June 2010 because now I am just on Warfarin therapy due to the clot and being diagnosed with Factor V he doesn't want to take a chance and oh, yes, just after starting the Warfarin in July I had what they called a warfarin failure and the clot extended.......but the door is always open for me to make an appointment at any time. The CHI energizer is hard to explain but I will e-you some info on it, I feel great after using it, and the improvement in the swelling and pettichia has been fantastic. My INRs go from 2.1 to 2.8 and I go for blood test about every 5 weeks now. I am STILL frightened of a part of it breaking off and moving, but I'll have to somehow get past that one. I had the opportunity to fly south for a week and passed on that also, not wanting to "anger" the clot.....sounds like it is running my life when I look at this post.......thanks for taking the time to answer......have a great day......

Lori,

Welcome.

Is the CHI energizer you mentioned something like this:
http://www.amazon.com/Energizer-Vitalizer-Listed-Machine-Warranty/dp/B000PEAL8C

Walking, swimming, and even cycling can be great sources of exercise. Just know, life does get better. I had a severe DVT and PE back in 1992 then started at my ankle and went all the way to my hip. I was told I would never regain full use of that leg again. From 1993 to 1995 I raced mountain bikes competetively in New England. I had proved my doctor at that time wrong. In 1995 I had a second DVT, and in 1996 I was diagnosed with Factor V Leiden (homozygous). I have been on life-long coumadin since 2001 and remained clot free and healthy (other then out of shape)

Regards,
Tom in Connecticut

Hi Tom,

Nice to connect with you.
The link you provided is similar, the one I ordered has infrared therapy...in the link below......love the machine, I use it 3 times a day. I am going to go back to cycling, would prefer horse back riding but I am terrified of a blow to the head.....so I'll hold off on that for a bit. My Dr. will decide in June 2010 if I should go off the Coumadin but I will have to really weigh the risks of that. Thanks for the info, glad to know that I'm not the only one out there.....

http://www.ib3health.com/products/Chi/CY106S.shtml

Here is a newsletter that my organization did back in Spring 2006 that focus on PTS. The article discusses the various forms of treatment for this condition.

http://stoptheclot.org/Newsletters/Natt_Newsletter_Spring_2006.pdf

Regards,
Tom in Connecticut

Thanks Tom, I will print it off and read it on my way to the Thrombosis clinic with my daughter, she is getting the DNA results today of her test. I appreciate all the info..........Lori

welcome Lori, To this wonderful informative site. Unfornunaly I have found that it is very rare to have two docs with same opinions. I own the infratoni chi machine its on my legs almost everyday. I believe is helps with the pain and swelling. Some other side effects I have notice with myself is hair loss, dry skin, stomach funk. and some emotional funk that I think comes with blood disorders and all the crap we all deal with. I can no longer handle coffee first thing in the morning. I do wake up with nostrils and gum bleeds. My hemetologist told me to massage away on my clots. That they were basically not going any wear. I have had multiply massages on my legs with no problems. Other than the major dvt i already had. I have found that low impact bike riding was the only thing I could do for excercise. Walking was to painful but the bike seemed to be the only way my beat up body cauld handle excercie. Good luck!

Hi Wendy,

It is a very informative site, I find if I discuss the DVT with people who don't have it or know someone who has it there is very little support there. You are right, no two doctors have the same opinion, even in the clinic I attend. Now, can you tell me what a infratoni chi is? I've started biking this week, I wonder about the massaging though, last doppler ultrasound I went to the resident was doing the ultrasound and the dr. told him not to press too hard in case he broke a piece off......so the saga continues as to just how much or how little a person can do with this condition. The dr. tells me that my DVT will remain as extensive as it is for the rest of my life.......but, it doesn't stop me from doing most of what I want........I just worry a little about cause problems.....take care....Lori