Douglas's Journal

Patricia Miller  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.

Rose Madura  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.  

Robert Miller  @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. 

Douglas Merten  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. 

Rose Madura  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.  

Douglas Merten  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. 

J Alexander Lassally  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?!) 

Rose Madura  Douglas, my apologies. I meant to say Amlodopine.  BIG difference.  I did not tolerate Amiodarone well at all and it actually affected my eyesight.  I'm so sorry for the confusion.  😲

Douglas Merten  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. 

J Alexander Lassally  Got it, Doug... Maybe try a new cardiologist to get a fresh take and better service. I had to switch 2x post surgery, too, when I got back to the west from Cleveland. Glad Woos team has been supportive. You could ask them for a Peninsula cardiologist referral ... 

Douglas Merten  Good idea. Would be nice to have a doctor that puts more thought about my case above the 10 or 15 minutes during a rushed appointment.  

J Alexander Lassally  Good luck man! I may be in Menlo Park for work sometime fairly soon, so will ping you - maybe a coffee to celebrate mitral valves!

Robert Miller  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. 

Douglas Merten  Rose - you are right there is a huge difference between amiodarone and Amlodipine. I definitely want to get off of the amiodarone which has significant side effects. I’m thyroid and liver.  

Douglas Merten  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. 

Patricia Miller  @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.  

Robert Miller  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. 

Richard Munson  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. 

Michele Renee  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!



 

Suzette Schear  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.

Douglas Merten  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.

Doug Fults  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.

Diana Chamblin-Bevirt  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.

Kimberly Eisenhut  Welcome Douglas! I was shocked in 2016 when I was told about my condition also, so you are not alone. I do not have mitral valve disease, but Tricuspid is my main problem along with an aortic anuerysm. I have been watched and had echos every 6 months for years now. I am still in wait and watch mode, so cannot comment on surgery yet, but many here can. I am sure there will be many others here happy to connect and answer any questions you may have. I would also suggest getting Adam Picks book, which has a lot of great information and explains so much about heart valve disease and surgery. There is so much information here on this website that will give you direction and educate you on everything you need to know moving forward. We look forward to hearing more from you and please do not hesitate to reach out whenever you need to with any questions/concerns.

Susan Lynn  Welcome! I'm a MV/Barlow's heart warrior. My surgery was 7 years ago. I'm doing just fine. Please feel free to ask any questions you have.

Kathy Ozio  Welcome! I understand the shock. I knew about my MVP for years, but suddenly went severe. I am almost at my two year anniversary.  You found the best site here for information and the best people. Ask anything!

Robert Miller  The learning center is a good place to start. https://www.heart-valve-surgery.com/learning-center.php

Douglas Merten  Grateful to receive the welcome and information. I have spent a lot of time in the learning center reading and watching videos.  Also starting to learn my way around and read others experiences. I and soon joining the MV/Barlow’s with surgery coming on January 7th. Doing preop testing and a preparation meeting next week. Family anxiety is high as we are trying to decide handling the holidays with everyone afraid of getting me sick. I I would love to hear any advice on handling the last weeks going into surgery.  I haven’t got to the totally confident all decisions are great full steam ahead yet, but I want to be.

Robert Miller  They will get your temperature and possibly do a covid check. They might also ask you if you have been around people that are sick. If I were in your shoes, I would get a covid booster and flue shot. I would not avoid family gatherings for Christmas and I wouldn't wear a mask because your surgery isn't until January 7th. Now if you plan to do some Silvester party, I might possibly wear a mask. But that's just me. If you have open heart surgery, coughing and sneezing is your enemy. That's why you try not to get sick and you want to wear that heart hugger all the time. 

Douglas Merten  Thanks, Robert I think we’re thinking alike. I likely will mask up around folks I don’t know or if a family member is sick.  Not sure what a heart hugger is.?

Robert Miller  It doesn't look the same as what I had but this is a heart hugger. https://www.hearthugger.com/ Basically, it has two handles in front of your chest. When you sneeze or cough, you use your hand to pull the two handles together. This will limit the amount your chest is expanding. It looks funky but I found it rather helpful. I got them for "free" from the hospital. And you get recognized as a heart worrier right away. Though I tried to hide it below my jacket, our neighbor across the street immediately recognized it.