Long term ACT patients How do you feel about Coumadin?

[Rich]

Coming up on twelve years for my St. Jude mechanical. Coumadin can be a little pain sometimes but really no big deal.
And it has not stopped me from doing ANYTHING.
Lack of understanding by so-called medical professionals, has been and still is the biggest problem. I have had to educate a number of these people.
Rich

 

[Elcarim]

Mech valver. St Jude aortic.

 

[Gnusgal]

I have been taking coumadin for 6 years due to a mechanical valve. Most of the time I don't even notice (I take about a million other pills. What's one more?). I've had a couple of incidences in which coumadin has been a problem, but they are few and far between. Mostly it's no big deal. Even with the one major bleed I've had, I would rather be taking it than risk a stroke!

I also home test, so that helps. When I had to go in for blood draws it was much more of a nuisance.

 

[dick0236]

I voted for #4. Warfarin does make me think a little before doing some things and the periodic testing is sometimes annoying and inconvienent. It is no big deal , just a fact of life.

 

[churchmouse]

I'm taking coumadin for 2 mechanical valves (St. Judes) and A-fib although I think the A-fib is geting better! I have some trouble regulating it and am now interested in home testing. Do have trouble remembering to take it with me when I'm going to be away from home over dinner time.

 

[Ross]

I'm taking coumadin for 2 mechanical valves (St. Judes) and A-fib although I think the A-fib is geting better! I have some trouble regulating it and am now interested in home testing. Do have trouble remembering to take it with me when I'm going to be away from home over dinner time.

Come on down the anticoag forum. We'll help you out. If you have trouble remembering to take it in the evening, how about taking it in the morning when you get up?

 

[Emma]

I voted for Chloe since she's only 8 but know it doesn't bother her or us much at all in day to day life. It just becomes a mild pain when she can't do every sport she wants to at school or go on a busy bouncy castle cos of the bump risks. Couldn't say she has any different a life to any other child her age tho! xxx

 

[geebee]

I find it interesting that, so far, 39% (#4 and #5 combined) are reporting some degree of annoyance or activity limitation associated with being on coumadin. This is a larger percentage than I would have predicted from merely reading people's posts on the various threads on this site. Also, 12% reporting outright unhappiness about being on coumadin is a higher percentage than I would have predicted.

Kind of depends on what people consider a mild annoyance. Before I home tested, I might have considered lab testing to be a mild annoyance. I am not at all surprised that some folk would say that and also do not really think the word "mild" is indicative of anything overall negative.

 

[bvdr]

I picked number 4. I was on coumadin for atrial fib prior to valve replacement 5 years ago so that made it easy to choose a mechanical valve. On a day to day basis it hardly affects my life but there are times when I have had to be off it for certain medical procedures or surgery and then it becomes more than just an annoyance. But there is no sense to dwell on it because it is what it is and it is something I need to take to live. Now that I'm 60 if I am ever free of atrial fib and need to replace the valve for any reason I do believe I would choose tissue.

 

[Karlynn]

The poll is useful, but the subjectivity of the wording (inherent in any poll) allows the reader to interpret the wording however they choose. I also don't think that "mild annoyance" is a negative. My husband can be a mild annoyance a lot of the time, but he's still a positive in my life.

I think ones perspective also just depends on how they look at life in general and the path of their own valve story. For people who all of a sudden one day find they need their valve replaced without any lead-up or symptoms or health issues, having to adjust to a daily regimine may seem annoying at the very least. Then there are those of us who've had enough problems that anything that keeps us from that which caused us problems is worth the effort and not considered a heavy price to pay. I had bad symptoms for several years prior to my surgery. My surgery went fine, but the recovery was long. For me, a mechanical/coumadin use doesn't keep me away form the horror of surgery (although for some it does) it keeps me as far away as possible from the horror of valve deterioration (and mine was hell) and the long process of recovery. I don't dread another surgery, I dread what comes before and what comes after - based on my own experience - which I realize is not the experience of others.

So I guess what I'm trying to say is that it's not as simple as the questions would lead people to believe because we all base our answers on our own stories and no 2 are alike.

For me and my own understanding - all but the bottom 2 selections are positive responses.

 

[Rain]

I have a mechanical valve and chronic a-fib.

I have a mechanical valve and chronic a-fib.

Oaktree hit it right on target.... ?For some people, coumadin is not ?just another pill to take.?

I understand coumadin, I've self monitored and stayed pretty much in range for the last almost nine years.... but it's certainly not "just another pill."

 

[Karlynn]

Oaktree hit it right on target.... “For some people, coumadin is not “just another pill to take.”

I understand coumadin, I've self monitored and stayed pretty much in range for the last almost nine years.... but it's certainly not "just another pill."

I think the poll reflects that view point along with others. If VR was trying to gloss over the fact that some people don't look on it as just another pill, then the bottom 2 options in the poll would not have been put there. But because some people do look on it as just another pill doesn't mean they are wrong - it just means they have a different experience and vice versa.

Oaktree doesn't look on it as "just one more pill" and I do. Neither of us is more right than the other because we both have different experiences. We may not fully understand why the other has that view point, but that's okay.

There are no wrong answers in this poll. We are each posting our own right answer and because one option shows more votes than another doesn't make one more right than the other - it just tells people how many people have had Horrible to Fabulous experiences with the drug and attempts to quantify the overall experience so others might be prepared for various scenarios.

We could do the same type of poll with post-surgical recovery and go from "It was a cake walk" to "I thought I was going to die for the first 6 weeks." Every vote would be a right answer. And if you'll notice - no one has yet cast their vote in the two extreme choices of this poll.

Let's not get this type of poll mistaken for the kind that Al Lodwick's been posting where he quizes us on little known facts and we're asked to guess the correct answer. It's not up to us to discuss and argue about the "right answer" here.

 

[Missy]

I don't.
I do.
I don't like to take coumadin. But I am so thankful to have it to take.

 

[Lisa in Katy]

Well, if we're going to get picky about the true meaning of the choices, here's how I interpreted them:

#1 I don't LOVE Coumadin, but I am weird and I like to guess the numbers, so 2 parts out of 3 are correct.

#2 The first part is correct because it's no big deal, but the second part of the question says that I have other things in my life that are much worse. I really don't have any terrible things going on in my life right now that would be classified as "much worse", so I can't choose this answer.

#3 The first part is correct because I have to take it to live, but even though I voted for this one, the second part is not exactly true. I haven't changed much about my life, but obviously having to take the assortment of pills (3 different colors of Coumadin now), get tested, and follow up with the doctor is something that I didn't have to do before. However, I haven't changed my diet or activities, so this is mostly true.

#4 I could just as easily have voted for this one because the first part is true and the second part is mostly true. There are times when I have to make time to go to the lab, so it is a mild annoyance, but since that implies negative thoughts about the drug, I didn't choose it. I have only positive thoughts about my surgery and the things that I do to try to ensure that I won't have another one any time soon.

#5 The first part's not true. The second part's not true. The third part is true, but only because I wish that I had a naturally healthy heart and hadn't ever had to go through this in the first place.

#6 This is the only one that's entirely false.

So, since #1 is 2/3 correct and the others are only 1/2 correct, I guess I should have voted for #1, mathematically speaking. Mostly I just went eeny meeny miney mo between #3 and #4.

 

[Resqrn]

mech. valve. didn't have a choice in the matter. actually we (doc and myself) had no idea that i would end up on coumadin. so just another pill not that big of a deal. i actually like going to the lab and have my blood drawn. i go on tuesday mornings due to that is the first day that the students can draw blood, i like to give them the oppertunity to learn. so not to worry if your are contemplating the coumadin route. mike

 

[Ross]

Please people, lets not turn a simple poll into something that turns into lawyer ball. Just accept the terms as they stand and vote with the way you feel when you first read the choices.

Some people don't like to take it and that's fine. I think we can all agree however, that your not so fragile as to start spurting blood everywhere from normal cuts and that you can use razors to shave etc.

 

[ALCapshaw2]

Well, if we're going to get picky about the true meaning of the choices, here's how I interpreted them:

#1 I don't LOVE Coumadin, but I am weird and I like to guess the numbers, so 2 parts out of 3 are correct.

#2 The first part is correct because it's no big deal, but the second part of the question says that I have other things in my life that are much worse. I really don't have any terrible things going on in my life right now that would be classified as "much worse", so I can't choose this answer.

#3 The first part is correct because I have to take it to live, but even though I voted for this one, the second part is not exactly true. I haven't changed much about my life, but obviously having to take the assortment of pills (3 different colors of Coumadin now), get tested, and follow up with the doctor is something that I didn't have to do before. However, I haven't changed my diet or activities, so this is mostly true.

#4 I could just as easily have voted for this one because the first part is true and the second part is mostly true. There are times when I have to make time to go to the lab, so it is a mild annoyance, but since that implies negative thoughts about the drug, I didn't choose it. I have only positive thoughts about my surgery and the things that I do to try to ensure that I won't have another one any time soon.

#5 The first part's not true. The second part's not true. The third part is true, but only because I wish that I had a naturally healthy heart and hadn't ever had to go through this in the first place.

#6 This is the only one that's entirely false.

So, since #1 is 2/3 correct and the others are only 1/2 correct, I guess I should have voted for #1, mathematically speaking. Mostly I just went eeny meeny miney mo between #3 and #4.

Nice Analysis Lisa !

The multiple statements under each item make it difficult for ME to choose any one of the selections because while one statement may be correct, the others are not.

It seems to me that there is not a lot of difference between choices #2, #3, and #4.

The IDEAL Poll would have ONE statement per item with a varying degree of 'gray' between them.

Bottom Line for ME is that Day to Day, Coumadin is NO BIG DEAL.

Dealing with Invasive Procedures, INEPT 'Medical Professionals', and a TOTAL LACK of Continuity of Care and Responsibility between different parts of my local hospital left ME as the ONLY person who seemed to understand and have a concern about my anticoagulation management when I went from ER to Cath Lab to Cardiac Unit Floor.

There were NO orders for Bridging following my Cath and the floor nurse was CLUELESS, telling me "you should be OK, you took your Coumadin last night!" IDIOTS! I had to threaten to "Raise H*LL" if I didn't get a Lovenox shot within 24 hours of my Cath. (Translation: Call my Primary Cardiologist). Unknown to me, my nurse did call my primary Cardio, and came back with a Lovenox syringe 30 minutes later. They DISCHARGED me an hour later. I interpreted the rapid discharge as a sign that they did not want to be responsible for my care (or their ERRORS in my care). The fact that my arm was PURPLE from shoulder to wrist after the Blood Pressure Machine from HELL had run up to MAXIMUM presssure after a false reading may have also been a factor.

Having an infected Cyst excised while Fully Anti-coagulated was LESS of a Big Deal!

SO, how would YOU vote on the impact of Coumadin on your life if you had NO problems most of the time but went through such a fiasco when you needed to be hospitalized for an invasive procedure?

'AL Capshaw'

 

[Karlynn]

Well, if we're going to get picky about the true meaning of the choices, here's how I interpreted them:

#1 I don't LOVE Coumadin, but I am weird and I like to guess the numbers, so 2 parts out of 3 are correct.

#2 The first part is correct because it's no big deal, but the second part of the question says that I have other things in my life that are much worse. I really don't have any terrible things going on in my life right now that would be classified as "much worse", so I can't choose this answer.

#3 The first part is correct because I have to take it to live, but even though I voted for this one, the second part is not exactly true. I haven't changed much about my life, but obviously having to take the assortment of pills (3 different colors of Coumadin now), get tested, and follow up with the doctor is something that I didn't have to do before. However, I haven't changed my diet or activities, so this is mostly true.

#4 I could just as easily have voted for this one because the first part is true and the second part is mostly true. There are times when I have to make time to go to the lab, so it is a mild annoyance, but since that implies negative thoughts about the drug, I didn't choose it. I have only positive thoughts about my surgery and the things that I do to try to ensure that I won't have another one any time soon.

#5 The first part's not true. The second part's not true. The third part is true, but only because I wish that I had a naturally healthy heart and hadn't ever had to go through this in the first place.

#6 This is the only one that's entirely false.

So, since #1 is 2/3 correct and the others are only 1/2 correct, I guess I should have voted for #1, mathematically speaking. Mostly I just went eeny meeny miney mo between #3 and #4.

And who's on 1st???

Loved your reply - it was a good chuckle! I have to admit that I like to guess the numbers too! It's like spinning the wheel on Let's Make a Deal - but I have yet to make it to the Show Case Showdown!!!

 

[Lisa in Katy]

Yes, Ross, that was my point, although I took the long way!

The discussion was beginning to remind me of another "great" American!

"It depends on what the meaning of the words 'is' is. If the?if he?if 'is' means is and never has been, that is not?that is one thing. If it means there is none, that was a completely true statement"." ?Bill Clinton, during his 1998 grand jury testimony on the Monica Lewinsky affair

"It depends on how you define alone?" ?Bill Clinton, in his grand jury testimony

 

[Randy & Robyn]

AVR with On-X.

Coumadin has not been a big deal at all since my surgery in 2006. I did get a complimentary cat scan last year after I cracked my head on our deck though.

Randy