Coumadin User Survey!

[Ross]

Chip don't bet the farm on the new drug. It's not even being tested on valve patients, so it could be light years before Coumadin is replaced.

Yes you missed it. It's been talked about numerous times. Al has a page about it on his website also.

 

[Guest]

The drug is Exanta (ximelagatran) and it surely will not be out in the fall for mechanical valve people. AstraZeneca did not ask for approval for this use. They have not reported on any tests in animals with mechanical valves that I know about. I was told that they stated testing on sheep with mechanical valves about 2 years ago but there have been no published reports, so it is likely that they sheep did not do well.

 

[Chip]

Ross and Al -
Thanks for the updated information. Al - I am kinda new to this site and everyone has been great. Where do I find your web page?
Thanks
Chip

 

[Guest]

www.warfarinfo.com has over 200 pages of information about warfarin.

 

[ticktock]

Survey

Survey

What an interesting post, and what input. I have immensely enjoyed reading it all. My answers:
#1 4
#2 lifestyle/gave up nothing. Absolutely nothing.
#3 remembering whether I just opened the bottle to take the pill,
or am closing the bottle after I just did.....
#4 3 at present. On Coumadin since 1978. First 20 years, would have
rated it a 5.
#5 watch for drug interactions, and test more frequently.
#6 large bruises, I put ice on them.
#7 NO
#8 NO
#9 Better

Coumadin; I'd rather swallow asphalt daily than have another heart surgery. The Coumadin is a slight inconvenience compared to the possibility of future surgeries. Trust me. I have had 4..... the first two were a cake walk. The second two, not so good. The last one..... you DON"T want to go there.

There is some excellent advice here, and certainly nothing that I can improve on. Just putting in my 26 years of experience.
mindy

 

[Guest]

Thanks Mindy, I think input from people who have taken warfarin for over 25 years is just as important as the "scientific" knowledge.

 

[Ross]

Sorry Chip, sometimes I mention stuff and in my sleepiness, forget to put the links in!

 

[danseamour]

SURVEY

1. EFFECT OF YOUR LIFE: 3

2. LIFESTYLE CHANGES: For me, since I had Cancer and an auto accident just 2 years prior to open heart surgery, it's difficult to separate out what lifestyle changes were due to what. I don't do much of anything right now due to back pain, so I'd say the biggest change and hassle is that I can't take any antiinflammatory meds to ease back pain, so I use vicodin only at night. Also, I don't think I would have been able to go back to dancing professionally, which I did for 10 years.

3. What is the SINGLE thing you dislike most about being on Coumadin?
~monthly blood draws (I hope to eventually do home testing). Hard to imagine drawing blood every month for the next 30 years! (smile) I've been doing it since 1997 already!!!

4. REGULATING THE INR LEVEL: 3

5. SIDE EFFECTS: Bruising is the worse, since I bruised easily before.

6. BLEEDING AND BRUISING: so far nothing overly distressing, but then again, maybe I'm extra cautious now.

7. 2ND THOUGHTS: Docs neglected to give me information about the necessity of blood thinners for the remainder of my life with my St. Jude Aortic Valve. They did mention a non-mechanical valve, but talked me into the St. Jude because of my age.

8. MISINFORMATION: I was NOT told about Coumadin therapy prior to surgery!!!!!

9. TOTAL EXPERIENCE VS. EXPECTATIONS: Upon leaving the hospital, when I was informed of the blood thinners, I had no expectations, plus I had no choice from then on in. I had to accept what was dealt me. I've adjusted fine, but am still disappointed that I didn't have the chance to make that decision. I wish I had been more proactive like you and researched it all.

10. OTHER COMMENTS: Keep your diet as regular as possible. If you try a new food or eat a larger amount than normal, I suggest keeping a log of what, when and how much. Just because a food is not on the doctor's list of risky foods, doesn't mean that it won't have an affect on your INR. Case in point: My Cardiologist's office cleared the use of soy milk/foods, because it wasn't on their list, however, I discovered that it affected my INR levels greatly.