Douglas's Posts

I had Aflutter a week after being released (10 days after surgery) and was treated for 48 hours over 3 days in the hospital. I was released again with a prescription for amoidarone. I was off of Amoidarone in about 6 weeks. I continued with Eliquis (blood thinner) and Lopressor (metroprolol) for another 2.5 months. The last thirty days I wore a heart monitor and had no heart rate issues. I was given the all clear to stop the above two drugs in August. I wore a watch to keep track of my heart rate to be on the safe side until my first year check up (March 21). We reviewed the data and the Doc said it was okay to stop wearing the watch. Good Luck on your journey.

Dan - I am on the same drugs and hopefully on the same path with a similar ending as you. I stopped the amiodarone today. So it will be a nervous time for the next couple of months. Thanks for sharing. I’m feeling more optimistic now and very anxious to get off the drugs.

This is my opinion but from experience of wearing those heart monitors 2 times, I think they are completely useless. I have no incentive in promoting this company but if you want any good monitoring, get a KariaMobile 6L. You don't need the service where a cardiologist is reviewing your EKG. Just get the basic service where you get results and statistics via your mobile phone. An Apple watch or Galaxy watch are also fine but they are not matching what the 6L does. And yes, take that medicine until you determine the next step.

@Dan, I just googled this because I was a bit surprised about the half life of amiodarone. that you posted. But you are right!! It seems in the ballpark of what you said (I got 58 days but with big variations so the 49 days is very reasonable). So really, it will take a LONG time, like a half a year, to reach around 90% of the desired dosage. Correct me if I am wrong but that really surprises me. Maybe the way to address this is to start someone on a high does and then gradually taper it off.

Douglas- Welcome to recovery. I have been on Amiodarone 3 or 4 x in past 2 1/2 yrs. IV after MVR and oral later on. It is a strong and effective arrythmia med but hopefully not a forever med. I have been on two other arrythmia meds that are not as strong but are well tolerated and also effective. Are you followed by an electrophysiologist? Be sure to have your thyroid labs checked if they have not been done yet. I had afib after my MVR and have been dealing w/ atrial flutter off and on since my aortic surgery a year ago. It is considered to be a cousin of afib. You may end up on a holter at some point to re evaluate everything. I have had 4 cardioversions total and they are a temporary fix although some folks get extended relief from them. They convert afib or flutter to normal sinus rhythm. Atrial flutter ablations are typically quite successful for cure. I have atypical (left atrium) and typical atrial flutter so my situation is different. I think for many, arrythmia issues eventually resolve after OHS. Best.

Douglas, I had Afib and Aflutter for about six weeks after surgery and was on high doses of Amiodarone and Metoprolol. The Amiodarone has lots of bad side effects. But mine was a textbook case in that it lasted almost exactly six weeks. I've been fine ever since and that was nearly eight years ago. I'm on a small dose of Metoprolol and Amlodopine. No blood thinner. Everyone is different. You may want to consider another opinion.

@Patricia Miller, what other arrythmia medicine were you on? Can you elaborate on how effective the others were? I am on Amiodarone and probably will stay on it for a long time. I would like to switch to a medicine with fewer side effects. @Douglas Merten, I had afib and a high heart rate after my second surgery and was told I should get ablation. However, we ended up doing cardioversion (they gave me large doses of Amiodarone before that, and then lowered it afterwards). It worked almost too good for my heart rate, especially with the Metoprolol I was also taking. My BP and heart rate is pretty good now after being off on Metoprolol. Afib still persists, though. In any case, if you are in sinus rhythm now, I would ask my cardiologist to tapper off on Amiodaron and see how that that affects your heart rhythm.

Alexander - yes Patricia - thanks for sharing your experiences it provides great insight and raises questions I need to follow up with. Rose - wondering why you are still on the small doses? Did you try to stop the meds and if so did flutter return? Robert - thanks, I will ask about tapering off the meds before heading to cardio ablation. I have an Echo coming up in a few weeks and am anxious to see how valves are functioning. Thank you.

The 25 mg of Metoprolol keeps my heart rate down. When my heart rate would go up, that's when I'd go into Afib or Aflutter. The Amiodarone 2.5 mg keeps my heart out of PVCs and both together keeps my BP In check. I plan to discuss meds with my cardiologist in April when I go see him.

Very interesting Rose, I may be headed down that same path. I have a small cardio block, which is a delay. It sounds like the opposite of a PVC? I am nervous about a long time use of amiodarone, but it sounds like you have tolerated it well. I’ll update after my next doctors visit when I should get an update on path forward.

Hi Doug - Sorry to hear of this Cardio Block. If I recall, there have been a few other thoracotomy patients who did have this post surgery. That is why I asked about the Midvar. I do think they remitted quite fast after surgery... Probably good to have a consult outside of Stanford weigh in on what to do with this - or wait it out. No fun to be on those meds. (curious if Stanford is being supportive or dismissive?!)

I had the cardio block going into surgery, possibly do to the enlargement of my atrium. I am dealing mostly with the cardiology group that referred me to Stanford. I only talked to Dr. Woo for maybe five minutes. Total post surgery. His team has been very good at communicating with me. Their position is that most of the issues I’m having are temporary and normal. My referring cardiologist is actually on maternity leave and I am getting very poor communication from the doctor picking up her patients. In fact, when my heart flutter was detected the cardiologist just put me on blood thinner and said they will do a cardio aversion when I was further recovered from surgery. In the meantime, while still in flutter, I ended up in the hospital with a plural effusion that had to be drained. It was at that time I was put on amiodarone which was prescribed by the cardiologist at the hospital, not the cardiologist that I have been seeing after surgery.

I am not going to say too much but I did not like Dr. Woo at all. In any case, since your cardiologist is on maternity leave and the replacement isn't too good, I would look for another one. It gives you a good comparison to your original cardiologist and you can always switch back after your original cardiologist returns from maternity leave.

I went with Dr. Woo because my brothers in law had a successful mitral valve repair done by him. It was definitely an assembly line experience except for the hospital nurses which were great. I’m starting my search for a cardiologist in the South Bay Area. First step is finding recommendations.

@Douglas Merten- Are you searching for an electrophysiologist? I am very fortunate to have an excellent EP doctor in the same cardiology group I go to. I am sorry you are getting mixed/delayed communications. It is hard enough navigating all this. My EP doctor mentioned my atriotomy scar also as a possible source but I have multiple sources of flutter as well. I have had thermal, but some people get pulse field ablations now. I believe it is not an option for my flutter. During the ablation procedure, they administer a med(s)? to elicit the abnormal arrythmia circuit so they can map and ablate it. They are done with sedation or general anesthesia. Cardioversions are typically a temporary fix. @Robert Miller- I am so sorry you had to have second mitral valve repair done. Amiodarone is not a med any of us want to be on. ugh. I may be facing more of it. I have been on Sotalol. Did quite well on it for much of a yr. No side effects other than prolonged QT so dose had to be capped. It stopped working early this yr. Switched to Defetolide (generic Tykosin) which requires a brief admission to monitor EKG's and dose adjustments. No side effects. Unfortunately stopped working so now waiting for an atypical (left atrium) ablation. But I have heard folks do really well on it. Was told Flecainide can make flutter worse and can affect heart function, so not an option for me. I am no expert, but unfortunately learning due to experience.

I think it's still not possible to send personal messages through this forum, which is annoying. In any case, even with severe MR there is a chance a repair is possible. They can't make a final decision until during surgery. They probably will try a repair, test the valve and then if it works end it there. If there is still a leakage, they will put in a new valve. Make sure they understand the size of your heart, where it could be after surgery, and if the cords they put in will still work afterwards. Also, I see you are doing this with Dr. Woo. Have you also talked to Dr. Castro. For my second surgery, I talked to both and my decision was very clear. For minimal invasive surgery, you might consider Dr. Gillinov. He is on the other coast but very experienced in this.

Well, so far i am a living breathing success story of what you are about to undertake. Plus i had the maze. Its been 3 years. That in no way is any guarantee the same outcome for you but as time goes by the success % gets better.like everything in life, there are risks. Those readings we all talk about such as chamber size have all returned to pre prolapse size per my echo.

I am so beyond happy with my mitral valve repair that I had January 9th of this year. The recovery was a bit longer than I expected and I hit a few snags after surgery, but overall I feel a million times better than I did before surgery. I did not even realize how tired and out of breath I was until after making a full recovery. I feel like my old self again. I had an enlarged aorta with severe regurgitation. My last echo showed that my heart is now back to normal size, the aorta is only slightly dilated (not severe) and no more leakage, only trace, which I guess is pretty common. I did deal with affib after surgery, but it was temporary. I have no problems and am so beyond thankful I had the surgery. Good Luck!

I had severe mitral valve regurgitation. Heart doctor said it was the worst one he has seen and didn’t know how I was functioning. My surgeon was hoping to do a valve repair but wasn’t sure if I would need a replacement. He asked me if I wanted natural or mechanical. I asked for natural so I wouldn’t be on blood thinners. The only thing with natural is they might have to go in another time in the groin. With mechanical it’s lifetime but blood thinners which can do damage to organs. My heart doctor told me it’s bad he is not going to be able to repair it, but surprisingly my surgeon is the one who makes the decision , in my case he went in and was able to do the repair it took six hours. I just take aspirin. I had set backs but they all have been addressed and everyone’s journey is different. Wishing you the best.

Thank you for the responses I am encouraged to hear about your great outcomes. it’s really tough, convincing myself that going into a major surgery when I’m feeling fine is a good thing. I do understand that waiting will only lead to bad things and not good things. I’m actually looking forward to the recovery work and getting myself back in shape. Still pretty terrified of the immediate time right after surgery. I’m pretty claustrophobic and the thought of waking up with a breathing tube makes me want to not show up for the surgery. But I’m getting my head straight and the success stories shared really help.

You can add me to the list of happy mitral valve repair patients - they'd "watched" it for years (decades actually), the latest in May came back showing a dramatically enlarged left atrium, with a TEE confirming severe MR, warranting surgery. I'm three months out from a robotically assisted repair now, and feeling great. Follow-up echocardiogram confirmed everything is at it should be - even the enlarged left atrium has returned to normal size. P.S. I was asymptomatic as well, but was aware I was slower than most on the climbs. I found the wakeup in ICU pretty easy, still feeling the general and with a temporary nerve block as well - "pleasantly numb". Breathing tube removad a bit odd but welcome.

I had mitral valve prolapse for years and they watched my regurgitation for decades as well. It went from moderate to severe fairly quickly, found this out in February 2024z. I had MV repair with Maze on 6/28/24. It was rough but glad I had it done. I had a couple of setbacks due to pericarditis, an inflammation of the sac around the heart, but now I’m almost 5”6 months post op and getting my energy back and my motivation to do things. My regurgitation went from Severe prior to surgery to “trace/mild” now.