Anyone have fears about coumidin

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Zoeey2011

Active member
Joined
Feb 24, 2011
Messages
27
Location
Barrie, Ontario, Canada
Hi all, I am new to this site and I find it very helpful. I had a Aortic Valve replacement on Feb 8/11. This is my second replacement. First one was 5 1/2 years ago which was a tissue valve. With the first replacement I was not on anything but a baby aspirin so this time I am a little concerned and scared about the whole coumidin routine. I see that a lot of the people on this site are on coumidin and have been for many years without any complications. I am still trying to get the INR stable.

Thanks for being here
 
Zoe,

I am newly diagnosed and trying to absorb the whole thing... I personally am NOT interested on the Coum route. I am looking at the Ross Procedure which is more technically challenging AND I am willing to take the risk in order not to be on rat poison my whole life. Yes, that is what it is. HOWEVER, there are many ppl that say it's not a problem and they eventually get their INR's stable. It's not much different then being on any other meds except you have to monitor it. For me it's too high maintenance. And given that I am 41 and not too far from surgery, I just don't want to do it. If I were older say in my 60's or 70's then I might do it.

I wouldn't be scared as it is quite successful for many people... I just don't think it is for me.

Deux
 
Hey Zoeey, greetings from Eastern Ontario !!
Regarding Coumadin: It is NOT to be excessively feared. I don't handle meds well and am super sensitive, but taking my
daily Coumadin has NOT been any kind of issue. A nice bonus was the ease with which I got my own home monitor to
check my blood every 2 weeks or so. Totally simple and no big deal.
If you want to get scared of something check out your next Ontario Hydro One billing...Holy crap !!!! ;)
 
Zoeey2011,

I was only on Coumadin for maybe 5-6 months but my experience with it was OK. I had no problem with the dosing and it did not really affect what I ate or drank. The main thing is to find a good clinic to manage your dosing and one that is informed enough to provide you with good advice.

There are lots of people on this site that have managed long-term Coumadin use with little or no problems and they will soon chime in, but it would help to know more about your concerns. What specifically are you fearful of? That might help people provide you with ways to reduce any risks and alleviate your fears.
Best,
John
 
Hi Zoeey2011, and welcome to a great support and information forum.

My experience with coumadin/warfarin is that the drug need not be feared, but it must be respected. It has had few, if any, side effects for me and interferes only a little with my life or lifestyle.
1. You MUST take the medication as prescribed. Find a routine, either morning, noon or nite and get in the habit of taking the warfarin at that time. It doesn't really matter when you take it. If you miss a dose, play "catchup" as needed. Buy yourself a seven day pill box to make sure you take your dose correctly.
2. Routinely test your INR on a one to four week schedule and normally make small dosage changes, if needed....even if you have to argue with your ACT manager. Many professionals over correct and will put you on a yo-yo.
3. Learn to "dose the diet, not diet the dose". If you enjoy vit K foods, leave them in your diet and adjust the warfarin as needed.
4. Don't worry about "cuts and bruises"....you will not bleed to death as a result of a paper cut or a knife slice.....but you may have a problem if you get bitten by a shark or mauled by a brown bear.
5. Use common sense and enjoy your life.:biggrin2:
 
Hi all, I am new to this site and I find it very helpful. I had a Aortic Valve replacement on Feb 8/11. This is my second replacement. First one was 5 1/2 years ago which was a tissue valve. With the first replacement I was not on anything but a baby aspirin so this time I am a little concerned and scared about the whole coumidin routine. I see that a lot of the people on this site are on coumidin and have been for many years without any complications. I am still trying to get the INR stable.

Thanks for being here

From your profile, I see that you only recently had your surgery on Feb 8 so you are still in the 'adjustment phase'. As your activity level increases, so will your metabolism, which means that you will need to increase your dose of Coumadin to maintain a stable INR.

Good Management is the KEY to maintaining a Stable INR.
SMALL dose changes work best to avoid going into the dreaded "Roller-Coaster" effect.
One of the most common causes of an Unstable INR is Testing (and changing dose) TOO OFTEN.
You need to know and understand that it takes 3 to 4 DAYS for Coumadin to become fully effective
so testing and changing dose more often than once a week will almost guarantee an Unstable INR.

In the first few weeks after surgery, a manager 'may' want to test twice per week 'just to be sure that you are not WAY over or WAY under your target range until they 'get a feel' for how you react to dosing. (People range from 'Low metabolizers' to 'High Metabolizers' which can greatly affect what dose they need to be on to achieve a stable INR. There is a Very Expensive Genetic Test which can determine this, or the manager can start you at a 'mid-dose level', see how you react, and adjust your dose as needed to ease you into your target range).

IF your INR drops below 2.0, it is wise to have Lovenox Injections 2X/day based on body-weight until your INR is back in range to prevent clot formation. If your INR is high, reducing your dose (many of us believe in dropping to Half-Doses for one or two days vs. HOLDing which many managers seem to prefer, even though it is fairly well known that Holding Doses causes INR to "Drop like a Rock").

FYI, there a many Horror Stories still floating around about living with / on Coumadin, most of which originated in the 'Bad Old Days' before INR testing was developed (in the early 1990's) which provided more reliable and accurate means to measuring and dosing patients. The Most Stable INR results come from patients who Home Test every week or two (either self dosing or having a Doctor who understands Coumadin dosing provide guidance). The next best results come from Dedicated Coumadin Clinics that test monthly for stable patients (and more frequenctly when INR is out of range). Independent Doctors and Nurses can have results that vary all over the map depending on how well they were trained and if they are 'up to date' on the latest guidelines.

There are Dosing Guidelines available at the AAFP (American Association of Family Practicioneers) and ACCP (American College of Chest Physicians) that are the standards used by many Physicians and Coumadin Clinics. There are also several on-line Coumadin Calculators. These websites and addresses have been posted several times in the Anti-Coagulation Forum (or can be found through a Google Search).

'AL Capshaw'
 
The question you asked is whether anyone has fears about coumadin. Some may but being one of the many here who takes it, I do not. There is nothing difficult about learning to manage one's own anti-coagulation therapy if you can either afford, or get supplemental health insurance to buy you a testing machine. Otherwise just find an ACT clinic you trust and work with them.
Deux: Warfarin is used to poison rats, and if you took in comparable quantities relative to your body weight it would have the same effect on you. Thankfully, we don't generally leave tasty foods in places humans are likely to find them after having heavily dosed them. While it is true that it is the same substance, it is both irrelevant and inflammatory to mention it in the context of a forum discussion of fears around taking warfarin. There are literally dozens of substances you ingest daily which would kill you if taken in sufficient quantity, including H2O. Zooey's experience with the relatively early failure of a tissue valve is not unique on these fora, and is a very good reason to consider the very mild inconvenience of taking warfarin. I too am relatively young and extremely active and am not bothered by it in the least. Gotta go now though, time to dose. (Followed by recording my day's food intake, exercise, the dose I took and the results of my once a week PT self test. All that takes about two minutes and I have done it on trains, aeroplanes and boats as well as in hotels, guest houses and tents in 8 countries and on three continents so far.)
 
Just as an after thought, I certainly don't want to be the fear monger on Coum.... like I said, I am sure it works for people but I am a kicker and screamer and don't like to "manage" things... which is funny because I have a bit of OCD. Maybe it's the thought on taking something that I would be obssessed with... and as far as consuming things that are bad for you, I tend to stray away from those things too. Then again, I am still trying to accept that I was born with this darn thing....
 
Hi Zoeey2011,
Just wanted to wish you a warm welcome from a fellow Ontarion. I can't help you with the coumadin question as I am not on it, but there are many members who will be able to help you with this. I am sorry that your tissue valve had to be changed in such a short time. May I ask what kind of valve you had and if you are on the youngish side? The reason I am asking if that I was told for anyone under 50 years of age the average lifespan of a tissue valve is about 10 years. So...I am hoping to get 10 years ( and if I am lucky perhaps a bit more time).
Hope you get everything straightened out with the coumadin.
Wishing you the very best,
 

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