Coumadin

[abilks]

After being seen at the Mayo Clinic last week, they are fairly sure i had an episode of atrial flutter in May, which caused my defibrillator to discharge 9 times. I was told it very likely this will return in the future. I was switched to a beta blocker and we are in a wait and see mode. Having the defibrillator is very reassuring, but having it go off for the wrong thing does not thrill me! I guess that's for me to find out in the future. Anyway, the doctor told me to take asprin, but also recommended starting on Coumadin. Is there anyone else that takes this? I am young (29) and tw drug kind of scares me. Any thoughts or perspectives?

[Largehearted]

Hi there.

I take Coumadin every day and it's not a huge deal. The levels can bounce around a bit and you do need to stay on top of that, but I have no discernible side effects. And I love not having the huge risk factor for stroke that comes with a-fib/flutter.

Peace,

Leon

[gfox42]

I took coumadin for a couple of months after a bout of a-fib following my myectomy. I did tend to bruise more easily than normal, but it seemed like a small price to pay for not having a stroke. Seriously, it's not a drug to take lightly (because of this and because the dosage has to be monitored regularly) but I'd take it again in an instant if I were having a-fib or atrial flutter.

Gordon

[Pam Alexson]

It is the safest way to help prevent a clot from forming in the atria during a-fib/ flutter. The risk for an HCM person having a stroke w/ a-fib is considerably higher then any other population of individuals who may experience a-fib . I started a-fib 3 years after my septal myectomy( 2006) and have been on coumadin and an antiarythmic BB ( sotalol), since.

Most HCM doctors( experts) have a very low tolerance for complacency regarding not getting on coumadin when one has a-fib.and HCM. IT is because they have the experience to see and know what can happen . FYI I took one 325mg of aspirin for years even before I was diagnosed with HCM obstructed. When a-fib started as a repeat visitor, it was evident.. i had to start the coumadin to be in control. When one has a-fib you need to seriously contemplate starting the coumadin. I have an uncle who does not have HCM and had a-fib for a couple weeks and when they planned to cardiovert him they could not... he has clots in his left atria. He had a history of a-fib was on sotalol and aspirin. Now he is waiting. Scary... waiting as he also has very high BP which ups his % of having a stroke with those clots in his heart.

I do home testing and have a Phillips meter at home just like the doctor has and it is easy and my insurance encourages my self testing and pays for it. I investigated home testing for my PCP and I was her first to start it. It takes the hassle out of running for labs everytime my INR jumps up and down. Statistics also prove that home monitoring keeps a patient in better therapeutic control...and they allow you coverage( for the costly strips) to test one time a week and no more going to the doctor one month later and learning I was out of range and if needed could not have the cardioversion. Most EP cardiologists will NOT do the cardioversion unless they see constant INR's of between 2-3 for a month. They will do the cardioversion if they do not have a month of levels after they do a transesophageal echo ( I hate these kind of echo's),to ensure that there are NO clots in the atria...if they unknowingly cardiovert someone w/ a clot it could result in a stroke or death.

My 2 cents is bite the bullet and get started be safer.

Pam

http://www.heartpoint.com/afib-tellme.html

http://www.anakarder.com/eng/yazilar.asp?yaziid=807&sayiid=34

[mbcube]

You may wish to discuss with you doc the use of asprin AND coumadin. Its usually one or the other, but not both. I'm a slow clotter to begin with (I'm thinking of adding that to my resume. . .) and did fine with a baby asprin. Once I had some a-fib, they put me on Coumadin and I had to cease any and all asprin.
Your levels on coumadin can flucuate so its important to have a local and accessable testing location. You need to be tested weekly at first then once they see how you tolerate it, by-weekly and then monthly. Your diet affects it as well as your other meds. if you have a consistant lifestyle, you should do ok, if you tend to vary alot (excessive salads one week, or lots of carbs and alcohol the next, or a change in your meds) you'll want to keep closer tabs of your levels. Pam's suggestion of home monitoring is excellent, but its advisable to work with a pharmacist and anticoagulation department to learn the basics first.

[Pam Alexson]

Marc .. have you checked with your HCM specialist regarding INR's? Around these parts they want to see a month worth of therapeutic 2-3 before doing a cardioversion, if one goes into a-fib. I have had in the past, TEE's to rule out a clot before they would cardiovert and that is how I came to learn that monthly was not acceptable to the EP and to the HCM specialist as well. They pointed out that when I needed it done there was no sure way to tell other then the TEE if I was safe without a clot and if my level had been down all month or simply that day with the sub therapeutic level that they found.

Worth investigating this for yourself as well.

Pam

[mbcube]

I'm actually hoping to get off the stuff next month when I see my EP. If I show no "issues" I'm asking him to consult with my HCM doc & getting off it and gouing back to baby asprin. To answer your question - My INR's are done through Kaiser and my HCM doc is not aware of my levels. I'm not a candidate for conversion as my a-fib is not continous, just an occassional run, and its been a while (I'm 9 months post op & my last "run" was 3-4 months ago). Because I have dual insurance this kinds of works, thought the two don't comunicate well!

[Glen Beamish]

Strange they would take you off the Baby Aspirin when you started Coumadin. I have been taking both for several years now with the blessing of my HCM Cariologist. Baby Aspirin has more benefit than just thinning blood so it's good to be able to continue it.
I was taking the Baby Aspirin long before I went into permanent A-Fib and when they decided to Maintain the A-Fib I had to start taking Coumadin. I asked about the aspirin and he said as long as you take it everyday and don't change that, they set your Coumadin doseage and INR level with you using it.
The problem arises when you don't take the aspirin everyday which causes your INR to jump.
I also go monthly for the INR test and pretty well maintain the same INR level.

[Pam Alexson]

Wow Marc .. I was a little puzzled as I do not have constant a-fib but the standard of care denotes that anticoagulation levels should be maintained for paroxysmal a-fib as well because we never know when it will return. If the atria is dilated as many with HCM move onto( from increased pressures and diastolic dysfunction) then a-fib often enters the scene. With this the choice is usually to treat the paroxysmal afib in the same format that constant a-fib would be treated.

Then I remembered....So you being newly post myectomy yours is not in this category correct?? Yours was as a result of tinkering with the heart right? I forgot how recent you had your myectomy. So if it returns .. at some point .. HOPING NOT.. you will be sure to get on it quickly as it is something that needs aggressive management in HCM hearts. It seems like you have been around a long, long time so I forgot its different when you have myectomy and have a-fib.. I had that also.

[Pam Alexson]

Hi Glen.. nice to see you .. its been a while. Hope all is going well. I have heard of some being on both but not commonly... always good to hear everyones experience.

Recently had my thyroid gland out .. I had no idea that thyroid levels fluctuating as mine is still doing with change of meds etc... will interfere so aggressively with INR. My coumadin dose doubled to 10 mgs and now is flirting around 7.5 mgs daily.I am very happy I am on home testing as this running back and forth to the lab / doctors and waiting ..waiting could have been awful. Warning to others.. EVERYTHING you put in your mouth or swallow as in certain foods and pills could very drastically effect your coumadin need. Read and monitor carefully.

Due to the thyroidectomy .. my metabolism is still in flux and its like a rollercoaster ride trying to find stability. Even my heart medication is effecting me differently with all the changes.

[Glen Beamish]

Thanks Pam and yes, all is well. I actually come on regular, just don't post as much, lazy I guess, but so many here seem to have so much good info I don't have much to add. I'm actually going in for my second hip replacement Sept 14. I had the other side done end of 2007, so looking forward to having that done and over with.
Good luck with the Thyroid problem.

[Pam Alexson]

Yes good luck with your other hip replacement and let us keep hearing from you. You have always had great things to add to this message board as well and your words have been appreciated..

Pam

[harrisb01]

Hello
I'm going to tell you my family's experience with Coumadin so you can learn from it. I tell it whenever the opportunity presents itself. I have obstructed HCM, my father probably did not, and this is not directly related to HCM. If your doctor has you on Coumadin, by all means follow that therapy!!

As you know, C. is a blood thinner. If ever you have any kind of trauma/accident, be sure tell the first responders that you are taking it. My father (who lived in Sioux Falls, by the way) fell and hit his head. Although medical staff where he lived (independently) were summoned, he was not taken to the hospital. He said he felt fine. The bleeding in his head wasn't obvious at that point. Several days later, he ended up in the hospital and by then he had a huge subdural hematoma and required neurosurgery.

My point in telling you this is that I think folks on C. need to alert medical folks, make family aware, maybe even wear a medical ID. At the appropriate time, please consult with your doctor regarding this issue so you can avoid Dad's experience.

Barbara Harris
WSHS Class of '75!

[Glen Beamish]

It's noted on my Medic Alert Bracelet.