Deep Vein Thrombosis (DVT) Support Group

Ok I read more - Ended up at 'dero' site Life After DVT. Have more reading to do now. :)

Wow, Roger!

First off, I'm not the Doc...I'm just a guy that reads this stuff and tries to understand how it applies to me and my experience. I like talking to other people about this stuff because it gives me more purpose and sort of bonds me with others that understand. Anyhow...here's a couple answers to your questions as I see it:

1. You're in good shape but over 50. That increases your risk regardless of other factors (known or unknown).
2. There are articles addressing connections between endurance sports and DVT victims. I've even seen horseback riding mentioned as a specific problem. Trivai piece....I'm a marathoner and ironman finisher too.
3. Regarding horseback riding - ask your doc. He may have other answers but my first thought was the bleeding risk while on anticoagulants. Fall off the horse and smack your head and that could be a fatal bleed. I've been advised to stick to stationary bikes indoors.
4. Diet and alcohol: the liver produces and regulates many of these enzymes and of course you probably know about the connection between greens and vitamin K which can affect your clotting and INR levels. Again: Ask the doc what his strategy is. I wonder if he wants to get your INR levels straight before he gives you permission to add these things to your diet. You mentioned you're on a statin also: Statins are particularly rough on the liver. Again--hit up that hard-a$$ doc and tell him he needs to convince you with why you should do what he says (with something more than "you're gonna die").
5. Supplements: Only what the doctor says.
6. See if your doc can refer you to somebody that can do finger prick tests. Otherwise, you may have an option to purchase the test machine and strips via insurance.
7. Much more activity on this site! I suspect you'll want to stay in touch to vent and double check your doctor. This is the place.

Hiya Roger! You need to find a doc that's more up to date on warfarin treatment for DVT. A hematologist is a good place to start! First time DVT does not require life long warfarin therapy, unless there are some other circumstances that make it likely you will clot again. Even people with certain heritable conditions don't have to be on warfarin for life. Unless your doc tests for genetic conditons or has good reason to suspect this won't be an isolated incident, I don't know how he could make that statement to you.

How long ago did you have prostate cancer? Certain cancers can cause a hypercoaguable state - that may be something to consider. But you could have also had your DVT for no known reason at all.
Re: alcohol - it's possible he's giving you the red light because you're on 2 things that put you at risk of bleeding: warfarin AND low dose asprin. The asprin can cause stomach bleeding, and the warfarin could prolong that bleeding which is serious. Alcohol can contribute to that risk. Do you have to be on low dose asprin? I'd Ask if you could come off it while you're being treated with warfarin.

I don't take supplements except for a Vitamin D and a Calcium/Magneseum when I remember to, and all I can say is you have to discuss this in depth with your doctor and base it on your own risk factors. Eating garlic is not a problem...mega dosing could very well be. IMHO if you eat a healthy diet, there's no need.

Your last INR was in range on the low side - so it's reasonable for you to request a retest in a week. Eventually, when you're in that 2-3 range for a couple of tests, they'll start testing just once a month, and that's typical.

I think Meow is right about the riding - while you're on warfarin, you're in more danger if you fall than you normally would be. On the other hand, if you DO end up being on warfarin for life, you can't live in a bubble either, so you'll have to weigh the risks vs. quality of life.

First thanks for the replies.
For meowatthesun-- I would like to read a reference to the horseback riding as related to the cause of DVT.
My current PCP is DR NO. Has told me to stop all activity except easy walking. Plus the diet.
I chose to eat 'normal' and get the INR readings based on that.

He has made it a directive I go on the statin drug - one I do NOT like. As it has so many bad issues. His point is I MUST drop my cholesterol.. which to me is not a that high nor a big deal. I had a cath scan of the heart etc 3 years ago and was almost perfect no problems with the heart.
I need to do more research on the supplements. I was cleared to to take D, CA/Mg/Z, Niacin, B Vit, Joint supplements - MSM-GLU-CHRO and Vit C. I am a supplement junkie though..:)

I drink ONE beer, split over a few hours. Even took to mixing it with fake NA beer. YCK
No warifin clinic around here. Stuck with std blood tests.

RE LauraLu I read ALL your posts. Great stuff Cannot find a hematologist close buy. I have to travel about an hour to get to the closest hospital and my PCP. I did find an Oncologist who does this .. works with DVT patients. I will set up an appointment with him for a second opinion. I did not tell my PCP. That my be good since it will address the cancer issue.

My PCP did no other blood tests all those assorted factors .. said I dont need them ???
Prostrate cancer- been close to 4 yrs now. I did the radiation no drugs.

I was not on aspirin since it has issues also. He 'ordered' me on it a year ago I did not take it. He had the xxxx to say IF I was on the aspirin I might ?? not had this DVT?? go figure. SO NOW he insisted I take the aspirin..also. The second opinion is coming next week.

I ride with a helmet. SO at least that would help if I fell. Been doing endurance racing with the horses for years. Retired now but I got use to wearing the helmet. The good ole boys I ride with think it is funny -dumb and they make fun.. but I just let them know my head is worth more to me then ego. I also ride a small endurance saddle.. NOT a 'real' cowboy, but I can out ride most.. done the100miler thing I preferred the 50 milers- way easy.

I am going to ride. My whole life - lifestyle where I live now and for the past 35 years is based on my life and love for my horses and riding them. If I die riding it would be OK with me.. :)
I asked the DR for the VIT K super shot but he told me NO that I was not to put myself in a situation where I was off the 911 grid..

I already checked on the INR machine.. yes early on, but I wanted to find out about them. My insurance will cover it 80%. SO IF I am on this stuff for 90 days - I will get the tester. My arms look like I am a junkie. Hate the blood pulls.
It is a real issue to drive 2 hours RT plus time at the lab every week. Takes up most of the day. The DR does not see me. They call.

Trying to keep this short haha.. I am already getting side effects. About 2 hours after my dose, I get really tired, get a slight headache feel lousy.. like the fog. Then after about 2 to 3 hours all is well.
I have been told to take this at 6 PM WHY 6PM?? If I took it later like 9 or 10 PM when the side effects hit me I would be asleep?
He would not tell me WHY 6 PM..
I am moving it later anyway. Today I went to 6:30PM . Will stay there for a few days them move to 7PM.

OK need to stop now .. Thanks
Roger

Hi Roger,

This is what we're here for.

First off (and I'm not trying to be preachy here...you've done more laps around the block then me!) but if you don't agree with what your doctor is saying than he has not convinced you as to why he is telling you the things he is. I view my doctor no differently than my auto repair guy, my property manager, or any other person who I hire for his/her technical expertise. My auto mechanic has to explain and prove to me why the old brakes cannot be resurfaced before I authorize him to do the work.

As for my doctor: The time he advised me to take my coumadin (also around 6 PM) was related to the amount of medicine he wanted in my body when I showed up (around 8 AM) for my PT/INR test. That made sense to me. If you'd like to take your coumadin later than I would assume he would just need to adjust the time he's doing the PT/INR.

I was in the hosptial last night for chest pain that was a bit disturbing to me. Turned out to be related to a tendonitis type injury in the shoulder. Anyway (I have a point for you behind this story) they were doing a full cardiac work up in addition to the CT scan to check for PE and one of the things they wanted to do was an echo stress test. The doctor that was running the stress test did not want me to do the test using the treadmill as she felt that the work it would take for me to reach the predicted heart rate would be too much stress on the leg which is still healing from the DVT. As I understood it, she was concerned about damage to the veins and muscles in the affected leg. That same kind of concern may be behind your doctors advice for only "easy" walking...again you'd have to ask him. (incidentally they used a medication to crank my heart rate up to the target...that was a highly uncomfortable experience--even for somebody that exercises well above the HR the cardiologist specified for the test!).

I could not find the article or item I read about horseback riding being a possible contributing factor to a DVT. I'm no horseman so I couldn't speculate on the stresses sitting in the saddle could cause. But don't forget, even smacking your head with a helmet on can cause an internal bleed that could be fatal.

I think you are making the right move in talking with another doctor that has experience in this...just make sure you are asking them why and forcing them to explain and make you understand and agree.

Have you worked on your diet to see if you can lower your cholesterol that way? The deal my doc gave me was to get it in range within 90 days or I would take a statin and I was able to do it. I love the oatmeal and some of the vegetarian dishes I've figured out but I miss my favorite junk foods. But it's worth it to know I'm not risking my liver.

I like the fight you have in you...it's inspiring! Just be careful that you don't "lone wolf" your fight!

I'm happy you've got an appointment with someone more familiar with DVT. Don't be surprised if he's got very different opinions from your PCP - like meow said, go with the one who makes the most sense.
My PCP is much more cautious than my hematologist: PCP freaks if my INR gets close to 3, and hematologist says don't worry unless it gets to 5. The hematologist was the one who gave me the green light to have a drink, use my hot tub and even says I can take Advil while I'm on warfarin, where my PCP says no, no, no. So I listen to my hematologist, naturally :) (except I don't take Advil - I'm too chicken)

When was the last time you fell off a horse? When you weigh risks, are you in more danger riding your horse or driving your car? I assume you're not a rodeo guy who gets bucked off and stomped on a regular basis...so your risk of injury riding may be no greater than your risk of injury crossing the street.
If it were ME, I'd need full body armour just to get ON a horse. So for me, it's much safer to stay out of the saddle.
Anyway, good luck with your appointment, and let us know how it goes.

I am back. Had a few bad days. I am going to an internal med DR Monday.
The new place has a Coumadin clinic. They have the finger stick machine. So after next week no more arm vein taps. My current PCP is out of the office this week- no one there. I will tell him next week I am moving on.
Had another bad experience with the current office. I was told 2 weeks ago when my first test was 2.0 to get another in 2 weeks since they were closed. I told them based on what I read, NO I need to come in this week. I had a test on TUE. No one called me again . I had to call again on WED at 11 am. They could not find my report or what on call DR had it. After a few more calls.. I told the person ?? I was going to hold and to find the test now.

I was having a bit of bleeding with a BM. A person came on and said the DR would call me back. I got hostile and said tell me the INR.. It was 3.5. Really ticked me off they had not called sooner.

I told them to have a DR call me back NOW . Got a call in 10 minutes .. was told to stop taking Coumadin for 2 days and go on 5 gr instead of 7 for 10 day and get another test.
Suppose I had waited 2 weeks. How far out of whack would I have been ??

I also chose to stop the aspirin.

What a mess around.. just new on the drug - working on diet modifications per the DR NO orders. and they jerk me around.

So way glad I found this other office and clinic. These problems will be gone.

On the other issues, I have done about all can with the cholesterol problem. I still really want to stop the statin drug. My call I may stop it again.
As to my horse riding. Have not fallen off for a few years. The new ride is very easy, settled and not a problem. Of course any horse and spook out and I could come off. I can run be over by a truck also :). I think the odds are in my favor. I will choose to take the risk. Just like those who ride motorcycles and ride bikes and other risky ventures.

I am at least passing up this fall riding season until the clot skins over. I will get another ultra sound when the new DR will order one. From all I read 6 to 8 weeks. After that I will go for the very short cold winter rides. I hate cold-- so I really wont be riding all that much after NOV unless we have temps over 40

More next week
RR

Good move Roger...any Doc that doesn't want to hear right away about your bleeding while on coumadin isn't the doc for you. I think you'll get much better balance and guidance from an internist that really understands what medications do to the body. Glad to see you're around! I had to do a couple weeks with blood draws for my PT/INR tests...that's no fun. My primary blood draw sites are turning into leather. Good luck!