This poll is about before and after experiences for those on anti-coagulation therapy (ACT). What the poll gauges is the difference between the expectation of problems with ACT before surgery and the reality of ACT, 3 months after surgery. This poll is to be voted on by members with real life experiences, not someone who is just speculating about it. Please, let’s hear from the voices of experience.
Expectations of Anti-Coagulation Therapy V. Reality
- Thread starter RCB
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Michaelena
Just want to clarify why I chose "harder than expected." I have been on warfarin since 1983, and it was no problem, I could proceed with my everyday activities, exercising, ice skating, skiing etc., my INR was stable. After my AVR and TVR, July 27, 05, I have not been able to stablize my INR. The range is 3.0 to 3.5, I do not skate, or ski, I still exercise at the fitness center 3 to 4 times a week. What I have been experiencing is soft tissue bleeding in my legs and nose. The Drs are not quite sure it is the level of warfarin that is causing this, so maybe I am putting unfounded blame on the warfarin, has anyone else experienced this problem?
Thanks.
Michaelena
Thanks.
Michaelena
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Karlynn
It's been over 14 years since my surgery and I can honestly say that I had heard nothing about Coumadin prior to my surgery, only that I needed it to prevent clots from forming on my valve. I was not told any scare stories, so it didn't terrify me. 14 years ago they were still dosing warfarin according to your PT (protime) #. Getting tested always meant a trip to the lab and a blood draw. It was, for me, the worst part of having to be on Coumadin. I was a Mom, raising children and had a hard time remembering to go get tested.
Today it's much easier being on Coumadin. I home test and do my own dosage adjustments with the approval of my cardiologist. Much of what I know about my own Coumadin management is due to Al Lodwick (big big hug) and the members here. Knowledge is freedom and that has been a huge gift.
Now I only wish our medical community would catch on.
Today it's much easier being on Coumadin. I home test and do my own dosage adjustments with the approval of my cardiologist. Much of what I know about my own Coumadin management is due to Al Lodwick (big big hug) and the members here. Knowledge is freedom and that has been a huge gift.
Now I only wish our medical community would catch on.
ALCapshaw2
Well-known member
I don't know how to answer the poll since I was NOT expecting to be on Coumadin. I requested a Bovine Pericardial Tissue Valve and the surgeon agreed.
Only AFTER surgery did he tell me that he implanted a St. Jude mechanical valve. I wonder why he didn't seem to know that most other surgeons ALWAYS recommend mechanical valves to patients with extensive Radiation Damage from treatment for Hodgkins Disease?
Bottom Line: For my day to day life, Coumadin is NO BIG DEAL.
For invasive procedures, going on Lovenox Bridging Therapy causes concern, but is managable.
'AL Capshaw'
Only AFTER surgery did he tell me that he implanted a St. Jude mechanical valve. I wonder why he didn't seem to know that most other surgeons ALWAYS recommend mechanical valves to patients with extensive Radiation Damage from treatment for Hodgkins Disease?
Bottom Line: For my day to day life, Coumadin is NO BIG DEAL.
For invasive procedures, going on Lovenox Bridging Therapy causes concern, but is managable.
'AL Capshaw'
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geebee
I have to mention that I was not expecting a mechanical before surgery so I am answering from the reaction I had to finding out I had a mechanical (once I woke up from surgery) and my expectations of the coumadin management information I received then.
I voted "easier than expected" rather than "piece of cake" because of my experiences with subsequent surgeries. If I had had no additional surgeries after my first, I would have voted "piece of cake" because the day to day is no big deal. I do love my rat poison because it keeps me alive.
I voted "easier than expected" rather than "piece of cake" because of my experiences with subsequent surgeries. If I had had no additional surgeries after my first, I would have voted "piece of cake" because the day to day is no big deal. I do love my rat poison because it keeps me alive.
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Karlynn
Michaelena said:
I have not heard of anyone having that issue due to Coumadin (but I'm only one person) and hopefully Al will weigh in since he's the guy that sees a lot of people on Coumadin. But my first thought on reading your problem was that something else is going on and Coumadin is bringing it to your attention more quickly because of the soft tissue bleeds. You've been on Coumadin for so long, I would think that if Coumadin was the root cause, and not a "side effect", so to speak, that it would have reared it's head well before this. Sorry to hear you have this issue.
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geebee
Michaelena,
Were you put on any new meds after your last surgery that you weren't on prior? If so, perhaps there is some interaction that is going on????????
Were you put on any new meds after your last surgery that you weren't on prior? If so, perhaps there is some interaction that is going on????????
The information I was given prior to receiving a mechanical valve was inadequate and is the reason I voted the way I did.
All I was told was that I had to take the drug for life, have my blood tested every month and watch my intake of Vitamin K and so I thought it wasn't a big deal.
Had I been well-informed of the reality of warfarin I would most certainly voted differently.
All I was told was that I had to take the drug for life, have my blood tested every month and watch my intake of Vitamin K and so I thought it wasn't a big deal.
Had I been well-informed of the reality of warfarin I would most certainly voted differently.
I voted that the whole experience of being on warfarin is about what I expected. I was familiar with warfarin because I am a nurse and throughout the years many patients of mine have been on it. I was familiar with how patients on warfarin often required things to be done with their protime (and later INR) taken into consideration. I was more personally familiar with it because my dad was on it for at least a dozen years at the end of his life. It was my first experience from the patient's perspective of getting regular blood draws and changing dosages because of them. However, it was here on this forum that I learned the ins and outs of what it should be like and how to go about managing it and why. I would say of the three seperate venues of obtaining information that it would be here on the forum that prepared me to confidently begin lifelong anticoagulation therapy.
My experience is harder than I expected. I did not expect to be so sensitive to Coumadin and bounce around as much as I do. However, I would still choose a mechanical valve to avoid future surgery (no guarantees).
It's been much easier than I had expected. My father-in-law was on Coumadin after his 2nd MVR and I was only told that it was an extremely sensitive drug. That was in December 1989.
The staffs at Baylor hospital in Dallas and for all my doctors seem to be knowledgeable about my "rat poison."
If I did not home test and if my PCP & other doctors were nit-wits, then I might have voted otherwise.
The staffs at Baylor hospital in Dallas and for all my doctors seem to be knowledgeable about my "rat poison."
If I did not home test and if my PCP & other doctors were nit-wits, then I might have voted otherwise.
I was waiting to vote
I was waiting to vote
Until, today..when I saw my Cardio..My Valve was replaced almost now 4 years, March 25th.....He said, he was amazed at my knowledge of coumadin. How, I can handle it with home-testing.......He approved it (home-testing) 2 months post-op...and was so pleased to know how I handle it....Test, call my INR to his Nurse once a month.I said, look at my hands, ect. No bruises, ect.He said. I can see that. and the fact, that I never have bothered him. ..like so many people, that do NOT home test.So, I voted a piece of cake with Hank and Jim...BTW. now, that I voted, I cannot see the other names...bonnie
I was waiting to vote
Until, today..when I saw my Cardio..My Valve was replaced almost now 4 years, March 25th.....He said, he was amazed at my knowledge of coumadin.
How, I can handle it with home-testing.......He approved it (home-testing) 2 months post-op...and was so pleased to know how I handle it....Test, call my INR to his Nurse once a month.I said, look at my hands, ect. No bruises, ect.He said. I can see that. and the fact, that I never have bothered him. ..like so many people, that do NOT home test.So, I voted a piece of cake with Hank and Jim...BTW. now, that I voted, I cannot see the other names...bonnie
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Nan
I voted "harder than expected". But I realize that most of my difficulty is not with the warfarin per se, but rather due to the lack of knowledge on the part of many in the medical profession about warfarin management.
It is also harder than expected for me in that I had absolutely no idea that being on warfarin for life would be more than just taking a pill every day. I didn't know about having to test for the INR on a regular basis, didn't know that foods and many other things could impact the INR etc. etc.
Goodness, what I have learned!
It is also harder than expected for me in that I had absolutely no idea that being on warfarin for life would be more than just taking a pill every day. I didn't know about having to test for the INR on a regular basis, didn't know that foods and many other things could impact the INR etc. etc.
Goodness, what I have learned!
twinmaker
Well-known member
OK, I was one of the few to vote for loving my rat killer. I've said it before, Coumadin has become part of who I am after taking it for 24 years. The surgeon didn't tell me anything about Coumadin before the surgery, only gave me the choice between the mechanical and the tissue and gave me info on both of them as far as which one would probably last the longest, etc. So I chose the mechanical and learned about Coumadin later. Even with my one emergency surgery for internal bleeding, I've had absolutely no regrets about my decision even though I didn't know anything about Coumadin beforehand. LINDA
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Kathy Canistro
coumadin vote
coumadin vote
I voted harder than I expected because of the lack of knowledge and education around here. The people on this site have been more hel to me than any of the medical people I deal with. I just found out today that my inr is 3.2 so I can skip a week at the lab.
Thanks to all of you that helped me get there
Kathy
coumadin vote
I voted harder than I expected because of the lack of knowledge and education around here. The people on this site have been more hel to me than any of the medical people I deal with. I just found out today that my inr is 3.2 so I can skip a week at the lab.
Thanks to all of you that helped me get there
Kathy
INRtest
Well-known member
Easier than I expected...
Easier than I expected...
I voted "Easier than I expected" but I wasn't coherent for 3 wks. prior to my surgery and only found out about Warfarin about 3 wks. after my surgery. I knew the nurses poked me quite often and put all sorts of meds into my IV, but nobody really told me about ACT.
Shortly after leaving the hospital (4 wks. post-surgery), I found out that one of the various meds I was crushing & putting into my G-Tube (what fun...) was Coumadin. A nurse would come to my house daily, test my INR and my Cardio would radically adjust the dosage, including giving me shots of Vitamin K on several occasions.
This is when I learned that this particular med was something that I would live with for a long time. I truly learned almost everything I know about ACT and what to expect, in general, from the wonderful people on this site. All in all, ACT isn't so terrible and I'm really excited because I currently have about a 6 month supply.
Easier than I expected...
I voted "Easier than I expected" but I wasn't coherent for 3 wks. prior to my surgery and only found out about Warfarin about 3 wks. after my surgery. I knew the nurses poked me quite often and put all sorts of meds into my IV, but nobody really told me about ACT.
Shortly after leaving the hospital (4 wks. post-surgery), I found out that one of the various meds I was crushing & putting into my G-Tube (what fun...) was Coumadin. A nurse would come to my house daily, test my INR and my Cardio would radically adjust the dosage, including giving me shots of Vitamin K on several occasions.
This is when I learned that this particular med was something that I would live with for a long time. I truly learned almost everything I know about ACT and what to expect, in general, from the wonderful people on this site. All in all, ACT isn't so terrible and I'm really excited because I currently have about a 6 month supply.
Inrtest one lucky man!
Inrtest one lucky man!
I will yield to Al's judgement on this, but daily testing that envolved vit K shots
does not seem to be "the standard of care". You are lucky to be alive or not stroked out.
"Shortly after leaving the hospital (4 wks. post-surgery), I found out that one of the various meds I was crushing & putting into my G-Tube (what fun...) was Coumadin. A nurse would come to my house daily, test my INR and my Cardio would radically adjust the dosage, including giving me shots of Vitamin K on several occasions."
Inrtest one lucky man!
I will yield to Al's judgement on this, but daily testing that envolved vit K shots
does not seem to be "the standard of care". You are lucky to be alive or not stroked out.
"Shortly after leaving the hospital (4 wks. post-surgery), I found out that one of the various meds I was crushing & putting into my G-Tube (what fun...) was Coumadin. A nurse would come to my house daily, test my INR and my Cardio would radically adjust the dosage, including giving me shots of Vitamin K on several occasions."
INRtest
Well-known member
Yup. Also lucky that my INR has been quite stable, especially considering I apparently suffered a subdural hematoma while I was in the hospital so I can't let my INR get too high.
As the assembly line worker, stuffing gherkins into jars told my cousin about how he had gotten his job, "just lucky, I guess."
As the assembly line worker, stuffing gherkins into jars told my cousin about how he had gotten his job, "just lucky, I guess."
RCB said:I will yield to Al's judgement on this, but daily testing that envolved vit K shots
does not seem to be "the standard of care". You are lucky to be alive or not stroked out.
"Shortly after leaving the hospital (4 wks. post-surgery), I found out that one of the various meds I was crushing & putting into my G-Tube (what fun...) was Coumadin. A nurse would come to my house daily, test my INR and my Cardio would radically adjust the dosage, including giving me shots of Vitamin K on several occasions."
afraidofsurgery
Well-known member
love my rat poison
love my rat poison
I researched the coumadin experience on this site before choosing a mechanical valve over a tissue valve, so based on that it's pretty much what I expected. True there are risks with coumadin. There are risks post AVR surgery no matter what, that's the truth about my medical condition.
I can't discuss my feelings about coumadin without discussing my experience with my AVR and mechanical valve. I LOVE my new, repaired state of being. I had no idea how crummy I was feeling from my aortic regurgitation. Every time I hear my valve click I am happy about the valve AND am happy about the coumadin because it allows me, without too much trouble, to have the valve.
As far as rating the therapy itself, take the pill(s) at night, no side effects, get stuck for blood every so often, don't have any head injuries or cut body parts off. OK as drug therapies go, that's pretty easy (yes I'm weird).
Patty
love my rat poison
I researched the coumadin experience on this site before choosing a mechanical valve over a tissue valve, so based on that it's pretty much what I expected. True there are risks with coumadin. There are risks post AVR surgery no matter what, that's the truth about my medical condition.
I can't discuss my feelings about coumadin without discussing my experience with my AVR and mechanical valve. I LOVE my new, repaired state of being. I had no idea how crummy I was feeling from my aortic regurgitation. Every time I hear my valve click I am happy about the valve AND am happy about the coumadin because it allows me, without too much trouble, to have the valve.
As far as rating the therapy itself, take the pill(s) at night, no side effects, get stuck for blood every so often, don't have any head injuries or cut body parts off. OK as drug therapies go, that's pretty easy (yes I'm weird).
Patty
Nancy
Well-known member
This is a good poll for some of you trying to decide which way to go tissue or mechanical.
