Freaking Out.

[67walkon]

Tommy, go check out afibbers.org

This is the best site on the internet for afib issues. Researche the amioderone and draw your own conclusions. Then discuss those with your doctor.

Doctors tend to treat things like afib in ways that keep them from getting sued if something bad happens. I had an intermittent afib issue which has been controlled for going on 2 years, with a med called Rythmol SR and by staying away from caffine. Rythmol was around for a while, but the SR version was new in the summer of 05. They had me on ami at first, and digoxin, both of which were bad, for me, meds.

Check out the site. There is a wealth of info there.

 

[ruth]

Welcome, Tommy!

Boy, you have been through a whirlwind ordeal! I can only imagine how all this has hit you at once. Please try not to freak out too bad, the stress really isn't going to do you any good. There are many strange things that we feel when we are newly post-op and our hearts are on the mend. I've never had the double vision issue, that's a new one to me.

I went into AFib at 2 weeks or so post op and was put on Amioderone too. Yes, it's a nasty drug but luckily in my case it didn't cause major problems. I wouldn't want to be on it long term. I was on it for about a month before I was cardioverted for AFib and for about a month after. My cardio watched tests closely and my liver test actually improved while on it (go figure) and my pulminary function test came back excellent. Other than a few stray PVC's my heart rhythm has luckily stayed normal. Like you I stay away from caffiene/alcohol these days and exercise a lot.

When I was taken off the amioderone my INR levels dropped (2.5 -> 1.2) and have stayed low despite gradual raising of the coumadin dosage. Since I had a repair and don't really think I need coumadin at this point I don't really care too much but if I had a mechanical valve I'd be real concerned. I can only wonder if there is some sort of challenge in re-establishing the INR range after ceasing amioderone.

Again, welcome, it's nice to meet a new member with a new set of experiences to share. I wish you all the best in your continuing recovery.

Ruth

 

[Adrienne]

When I was taken off the amioderone my INR levels dropped (2.5 -> 1.2) and have stayed low despite gradual raising of the coumadin dosage. Since I had a repair and don't really think I need coumadin at this point I don't really care too much but if I had a mechanical valve I'd be real concerned. I can only wonder if there is some sort of challenge in re-establishing the INR range after ceasing amioderone.
Ruth

I was on Amioderone while in AFib before my operation as well as Coumadin. Then after the surgery, I took a low dose of Amioderone for 5 weeks. The Coumadin I ended up taking for almost a year after the surgery because the cardio didn't want to take a chance that I go back into AFib (long story). In any case, it took at least a few months to get that nasty Amioderone out of my system and to get the Coumadin levels into the range they were supposed to be. Like you, Ruth, I wasn't particularly worried since I was in NSR and had had a repair.

OrlandoTommy, when you get off the Amioderone, you will have to be very careful with the INR as it will have a tendency to go down.

 

[musician2k]

I was on amiodarone (IV) after my surgery due to apparently dangerous a-fib. This all occured before I was awake, of course. I was allergic to it. Apparently that's pretty common and additionally, I was on Verapamil prior to surgery and it was still in my system. I guess there's quite an interaction between those two as well. As a result of the amiodarone reaction I developed complete heart block & now have a pacemaker. It's possible your amiodarone is interacting with something else you're taking, as well. If I were you, I'd give the cardiologist a call on this one, and maybe not wait. Double vision is never fun - and I've had it (even well prior to my surgery) and they think it's migraine related but I have had two TIA episodes as well. So it's something to take seriously.

 

[CathyK.]

Tommy first off, welcome!! I am 11 weeks post op and I was put on coumadin, pacerone(amiodarone) and toprol after going into AFib my 2nd week out. I am still on all the meds and should be taken off everything the
17th of this month when I see my Cardio. The surgeon stated that the amiodarone is a tuff drug but not for a short period of time. I will be on it for 3months when I get off of it. I voiced my concern when I was put on it and he said yes, if the drug is used for long term treatment it can be damaging but for only 3 months I would be fine. So far, so good. I do get dizzy spells but I think that is from my BP dropping. I go to cardiac rehab and the nurse there told me that my BP is running low so keep an eye out for fatigue and dizziness. I told her I already have had these symptoms and am watching it.

Good luck on your continued recovery!!

 

[sue943]

I am another who was prescribed amiodarone for A Fib, I couldn't tolerate digoxin. My cardiologist wanted me off it as quickly as possible as it is a horrid drug. I don't know if it was the amiodarone but I now have an underactive thyroid.

I see you live in Florida, I hope you were warned not to expose yourself to the sun, or at least to avoid it as much as possible unless you want to look like a smurf!

 

[Adrienne]

I don't know if it was the amiodarone but I now have an underactive thyroid.

My endocronologist (whom I have had for a long time for an underactive thyroid) said that Amiodarone can do all kinds of stuff to the thyroid. Luckily, I was not on it long enough to do any harm.

 

[Harpoon]

Just wanted to say thanks to everyone for all the good info and suggestions, def makes me feel much better.

My surgeon is from the Cleveland Clinic and is supposed to be one of the most experienced in the nation, he does between 200-250 valve replacements per year. So im a little hesitant to question him, he put me on the Ami when i went into Atrial Fib and he wants me to stay on it for another 2 months, 200mg per day one tablet every morning.

I go to see my cardiologist May 7th and im going to let him know about the drug as well and see what he says.

My doctors at the hospital all seemed to agree with me being on it, so im a little confused because I believe everyone here since they have dealt with it happening to them.

Ill keep you all posted, i did ask my surgeon "what if i stopped the ami right now" and he said i would be fine, but i think he has me on it for the Coumadin.. i dunno, so confusing...uhggg.

Thanks and ill update soon,
Tommy

HOLY CRAP that's a lot of amiodarone!!!!


It's bad stuff, very touchy and it reacts with EVERYTHING.

I was on it for about 10 months and I had to get all kinds of bloodwork to keep track of what it was doing to me chemically. It interacts with every other medication I was on at the time, furosemide, spironolactone, digoxin, lisinopril, and warfarin. Some of those meds it made more potent, some less. Digoxin and amiodarone do NOT mix well at all and I had to take them 12 hours apart because my docs felt I stood to gain some benefit from the amiodarone as I recovered from my surgery.

The stuff also reacts with a lot of foods, most notably grapefruit and grapefruit juice which you should NOT consume while on the drug.

It is a last resort medication, generally used to control arhythmias but there seems to be some debate over how useful/successful it actually is in moderating abnormal heart rhythms.

Who was your doc at Cleveland Clinic? I know that place like the back of my hand, both the hospital and the city. While My surgeon, Dr. Roger Mee, is back in Australia now, I still know most of the cardiologists and cardio/thoracic people out there.

Talk to your doc about what's going on. Make sure the amiodarone is absolutely necessary for your recovery and be sure your docs know not only your concerns, but everything there is to know about the episodes of blurred vision and any other "side effects" you've experienced.

Amiodarone will affect how warfarin metabolizes in your body. In that sense, it can affect INR/PT, but using amiodarone to control warfarin seems about as safe as using spinach and chick peas. There are other folks here that can explain that better than I can, but I do have a biology professor for a father so I know a little about what 'm talking about.

You use a simple blood test to monitor INR/PT and you alter the dose of the anticoagulant based on the test results, you don't introduce another medication to off-set the anticoagulant except in circumstances when it needs to be done in a hurry, say for emergency surgery, and you do not use amiodarone for that.


It may be that my language is too strong here, I'm not a doc and I really don't know much more on this than from what I've experienced personally. I can say that there seem to be a number of means to manage both the arhythmias and clotting factors that would be far preferable to using a drug that will kill you if used for extended periods of time without close supervision (including frequent bloodwork) by a doctor.

Amiodarone is scary stuff and, frankly, I'm not sure it should be used outside of a hospital setting without good reason. The literature I've seen on it advises against amiodarone use for periods longer than six months because of a risk of death. You KNOW that's serious when they put that in there.


Talk to your docs, soon.

 

[ALCapshaw2]

"Been There, Done That" both for post-op A-Fib and Double Vision.

I had a few A-Fib events spread out to about 6 weeks post op (3 days, 5 wks, 6 wks to be exact). They ALL went away after 3 hours (Digoxin protocol in hospital, monitored in ER, sitting at home with instructions to be seen if it was still active the following morning).

Amiodarone is the SLEDGE HAMMER of anti-arrhythmics.

LAZY Doc's like it because it just about stops any and all arrhythmias and they don't have to be bothered with caring for an arrhythmic patient. I suspect they don't tell you all the nasty side effects or that it has a 6 MONTH Half Life which means that it lingers in your body for eons!

If you have an established relationship with your Cardiologist, you may want to contact his nurse and tell her about being put on Amodarone to control your A-Fib and increase your INR!

If your surgeon really meant to control your INR via Amiodarone he should be REPORTED to the Hospital and Medical Board of your state (IMHO). Again IMHO, this would constitute Medical Malpractice!

FWIW, When I developed exercise induced (and / or caffeine induced) A-Fib, my Cardio put me on Sotalol (generic for BetaPace) which did the trick with a Very Low Dose once my body adjusted to it (after a few weeks).

I went through all those same tests for my double vision and other visual effects and NOTHING was ever found, same as everyone else. I told my Cardiologist that whenever it happens I just chew a regular aspirin (325 mg) "just in case". He didn't tell me NOT TO so we leave it at that. Best to check this out with your Cardio before following suit. Finally, like everyone else, my visual effects go away in a short time (20 seconds to a minute or two).

'AL Capshaw'

 

[OrlandoTommy]

Thanks

Thanks

Thanks everyone for the good info...!

I saw my cardiologiest yesterday and he told me that he also wanted me to stay on the Ami for 3 months post op, i have about a month left.

The main side effect i think i have with Ami is vision stuff, my double vision seems to have gone away but my right eye is a bit blurry, cardiologist said Ami leaves deposits in your eyes which can cause blurry vision.

About the turning blue, im a little confused about that because ive been in the sun religiosly since ive been out of hte hospital, it makes me feel better for some reason, i didnt know about the turning blue, but im not blue, i have a pretty good dark tan..

If you do turn blue when does the blue go away?

 

[Ross]

No offense, but I still think you should insist on something else. That stuff is going to stay in your system up to 6 months after you stop taking it.

 

[OrlandoTommy]

I think I will do that, i will call his office tommorow.

Just as I was feeling so happy for not having double vision for a full 2 weeks now (longest ever since surgery), tonight i came up my stairs from work into my condo, and BOOM, i got double vision again, this time for only about 20 seconds (instead of the typical 5 minutes) and then it went away but long enough to completely ruin my night and leave me back at square one again with anxiety.

It just really sucks when you make it far and your feeling good and then that happens, i just keep wondering while its happening, what if my brain is being damaged while this is going on, what if something worse is to follow, bla bla bla.... its just horrible, i really hope it goes away. I see SO many success stories and i know im only 6 weeks post op but its just so scary and being alone when it happens.

Also, i got my blood pressure monitor and the past few days my BP has been 125/85, back to normal thank goodness, also my INR levels are at 2.8.

Thanks everone for ur support,
Tommy

 

[ALCapshaw2]

I think I will do that, i will call his office tommorow.

Just as I was feeling so happy for not having double vision for a full 2 weeks now (longest ever since surgery), tonight i came up my stairs from work into my condo, and BOOM, i got double vision again, this time for only about 20 seconds (instead of the typical 5 minutes) and then it went away but long enough to completely ruin my night and leave me back at square one again with anxiety.

It just really sucks when you make it far and your feeling good and then that happens, i just keep wondering while its happening, what if my brain is being damaged while this is going on, what if something worse is to follow, bla bla bla.... its just horrible, i really hope it goes away. I see SO many success stories and i know im only 6 weeks post op but its just so scary and being alone when it happens.

Tommy (

I can sense your anxiety, confusion, and frustration Tommy. I'm sure it's all overwhelming to be rushed into surgery and then recovery never having known you had a 'heart problem'. And now you are receiving all this advice contradicting the very people / doctors you trusted to save your life.

It would help us to understand your situation if you would identify which people / doctors are telling you what. Some Doctors like to use Amiodarone to control arrhythmias from the get-go and seem to be able to use it in a controlled manner for a controlled period of time with no permanent effects. Obviously many of us on VR.com are NOT fans of this practice! Hopefully you will get this issue resolved with understanding in short order, whichever way you go.

Frankly, I'm still confused about your Coumadin Management, who is doing it, and their experience managing coumadin patients. If you are not using a real Coumadin Clinic, I would highly recommend trying to find one to manage your Coumadin. Coumadin Clinics are known to do a better job than most Doctor's who only have a few patients on anti-coagulation drugs.

In the mean time, I urge you to learn as much about Coumadin and it's management as you can. Reading Al Lodwick's website www.warfarinfo.com is one of the BEST ways to go about educating yourself.

A good Primary Care Physician (PCP) would go a long way towards properly overseeing your post-op recovery and health care. I recommend an Internist for this function.

One last question: You mentioned having your vision problems while alone... do you live alone? If so, is there someone who could look in on you or come stay with you while you are experiencing 'difficulties'?

'AL Capshaw'

 

[OrlandoTommy]

Hi Al,

I will try to explain the best i can with what has happened as far as Docs go..

I went to the hospital in March 2007, to have my surgery. Dr Caldeira was the surgeon and prior to my surgery I met with Dr Sulenberger who was the cardiologist, both docs i met while at Tampa General.

Sulenberger was quick to determine that I needed a valve replacmement, actually he said it was leaking really really bad.

That was the last I saw of Dr. Sulenburger, the next thing I knew I was meeting with the surgeon and he gave me some options about the valves but highly recommended the mechanical. I was with my Mom and Dad, none of us knew anything about this so we went with his advice.

From the moment we got to Tampa General the nurses, every one was saying, if you have to get surgery try to get it with Caldeira, he apparently is the best of the best at Tampa General and to be honest with you, i felt really good when i met him, he was very confident, very friendly, listened to me and was a Christian, which was important to me.

The surgery went as planned, i was out of the ICU in 12 hours back in my room, the next morning i was walking around with the physical therapy team, 2 days after that i was sent home with a handful of prescriptions.

I was dealing alot with my surgeons nurse practicioner and right before I left the hosptial Dr. Sulenbergers nurse practicioner met with me a few times to check on me.

Once i left the hospital Dr Caldeieras nurse practicioner told me to see Dr Caldeira in 1 week, so I did, at that point he adjusted my Coumadin levels, because I had been testing myself at home. I got a machine Fed Ex'd to me the day I got home from the hospital it was waiting, not sure how that happened to fast but it did.

From that point on Dr Caledira had been telling me to come back and see him every 2 weeks, he took me off the Metropolol and put me on Toporol XL, which i felt 1000 times better when he did, he put my Coumadin level up to 7.5 and my level shot up quick, all the way to 5.0.

I called and they told me to stop taking it for 2 days and i did, my levels quickly went down to 2.5 then i started taking 5mg again.

The next day my heart went into AFIB, beating about 125 bpm. I went back to Tampa and saw him and the ECG confirmed my heart was in AFIB, also my levels of INR were slipping down to 1.5 again.

At that point he told me to get on the Amioderone for the Afib and he also said that Afib was very common to see about 2 weeks out for heart valve patients, he said it didnt happen all the time but he did see it alot and within a few days it went away.

He wanted me on the Amioderone for 3 months, he said he typically does it for 3 months on patients who experience AFIB, he also said it woudl help my Coumadin levels rise quick.

My levels 6 weeks out are now normal, i havent had AFIB again and 2 days i met with Dr Sulenberger in Tampa for the first time since my surgery.

He wanted to see me get off the Amioderone within the next month (June 5th) but he did agree that I should be on it. Also my family doctor here in Orlando agreed that I should be on it to for that amount of time.

So 3 different doctors all agreed on that.

I had the double vision a few times right after my surgery, went to ER, got tested and all was fine every time.

Then it went away, i had it about 2 weeks ago, went to the ER, everytihng was fine, i was in the ER for 3 days while they tested me..

Now just last night i had it again, but only for about 10 seconds, every time it has happened i have been standing up and have felt fine before, during and after the double vision epispode.

It freaks me out but from what I have read it seems like something that just kind of happens after surgery to some people and it will taper off.

I do live by myself, i have a girlfriend who is in law school, we are usually together 24-7 but her law school finals started around the same time as I went into the hospital. She has been at her condo studying night and day at my request, i didnt want her to mess up her law school since first year is the hardest on my account.

So thats why i have been alone alot, Friday she is done and we will be together much more often.

Hope this helps some Al.

THanks,
Tommy

 

[GeorgeM]

Hi Tommy

And welcome to VR - it's a great place and one where I've had lots of great advice.

Like you I've had an AVR (back in Feb 07) and I am making great progress 13 weeks out.

However I have had several bouts of A-Fib, dizziness, blured vision etc.

So don't let that worry you - they should all stabilize and go away.

One tip I can offer is to rest up and make full use of your recovery time. And take some gentle exercise like walking.

If you are back at work after 4 weeks and looking at PC screens etc, then it's possible your stressing youself out.

You've had major surgery - and so at the very least your body deserves some R&R.

Best Wishes

George Montgomery

 

[Karlynn]

Tommy, I'm sure you've read the side-effects of Amiodarone and double vision (as well as other vision problems) is one of many. I'm willing to bet that right now the double vision is from the drug, although recovery from surgery the first 6 mo. can throw in some strange occurances that can't be explained other than the broad "recovery" label.

Remember that when you go off the amiodarone you will need to monitor your INR closely as it will most likely drop and your dose will need to be increase.

Also, most of us here would never have recommended a two day hold for an INR of 5.0. I personally would not have even held one dose, I would have just decreased my overall weekly dose by 10% (my range is 2.5-3.5)

It's very important that you have someone managing your INR that really understand the drug. Ideally, learning to manage it yourself (since you home test) will be your best option. Hopefully you have a doctor that will agree to that. (Diabetics manage their own insulin daily dosing and there are more immediate threatening risks with that being done incorrectly.)

People who think they know how to manage Coumadin but do things like 2 day holds for a 5.0 are really our biggest roadblock to successful Coumadin management and I truly believe it's what gives Coumadin use such a bad rap. A great heart surgeon doesn't always know much about managing Coumadin.

Educate yourself with Al Lodwick's site, www.warfarinfo.com Order his dosing charts and I know you'll be successfully managing your own. It's not rocket science, and it's not an exact science (although with some of the things we see here, some doctors think it is) and the biggest thing is that you will come to know how your body reacts to changes and will know what the right thing to do is. One visit to my cardio I had an INR of 4.8. She asked me what I wanted to do. I told her I wanted to just retest in 3 or 4 days and see what it was before I made any changes. She said she would do the same thing. She's very comfortable with me, a 48 year old slightly intelligent person who's been home testing for 4 years, managing my own dosing.

Best wishes.

 

[ALCapshaw2]

Thanks for the 'rest of the story' Tommy.

You've had quite a 'ride' on the 'OHS Express' and encountered many of 'bumps in the road to recovery', all with no prior experience or understanding of what to expect.

I too had some A-Fib events but because I had read some of the Amiodarone Horror Stories, I knew of it's potentially serious side effects and told my Doc's that I wanted to exhaust all other options FIRST. My Cardio started with a Beta Blocker which worked until my heart changed again. At that point he recommended Sotalol (generic for BetaPace) which specifically targets A-Fib. After a few weeks, it was controlling my A-Fib quite well and the side effects (mostly dizzyness) had subsided as my body adjusted to the med. FWIW,I believe the package insert for Amiodarone says that it is to be used only as a LAST RESORT but many Doc's seem to like to use it simply because they know it will knock out most arrhythmia's in short order.

While 'self testing' INR is a great idea, you need to become familiar with how it acts in your body and it helps a GREAT DEAL to have knowledgable guidance from an experienced Anti-Coagulation Manager until you are comfortable with self dosing. (TESTING is the easy part, DOSING is where the 'art' of anticoagulation therapy comes into play. AL Lodwick's DOSING GUIDE ($5) is a Great Tool to aid in that process.

I hope the rest of your recovery settles into a dull and boring ordeal. You've had more than your share of 'excitement' so far!

'AL Capshaw'