Nancy's Journal

Susan Lynn  Some leaking is common, but I haven't heard of a moderate leak after surgery. You had one of the top surgeons in the world, maybe there's another explanation. Best of luck, Nancy.

Anna Jones  Hi Nancy, my surgeon also told me that mild leaking is normal. However, I also haven't heart that moderate regurgitation is common after surgery. I would give a call to your surgeon's office to see what they have to say, and I would also ask your cardiologist his thoughts.

Try not to worry... which seems to be a common event after this surgery.

Sending prayers and best wishes.

Nancy Surprenant Takahashi  thank you all for your input and ideas. I have an appointment on the 17th and I will ask just how much it's leaking....maybe mild and it's not a problem, just thought fixed was FIXED.

Tracy Fallu  Hi Nancy-
I know each situation is different. I have mild/moterate regurgitation 11 months post Mitral Repair. My cardiologist has put me on a watchful wait 6 month follow up. When I mentioned to him I’m frustrated, he stated he would be as well if situation was reversed. For whatever reason, my body did not heal as should even though I had an amazing surgeon. I have not made an appointment with the surgeon to see his take on the report as I don’t want to “bother him”; however it’s wearing on me and will likely make an appointment sooner than later.
I hope you were able to find out answers that help your concern.

Steve Farthing  Your doc might also allow you to try taking extra potassium which is available over the counter. http://www.livingwithatrialfibrillation.com/3094/potassium-and-atrial-fibrillation/

Barbara Wood  Well Nancy, the cardioversion plus amiodorone for 4 months worked for me. Got afib about a week or two after I came home ( mitral valve repair with a maze). After about 6 days of it, went back to the hospital to be started on amiodorone & have the cardioversion. Now, one year later,have had no recurrence of afib.
It is a scary drug...you need to be monitored while on it & a baseline for your thyroid, pulmonary functions established. They like to "load" you with high doses & monitor you the first few days, hence the hospital setting ( at least this was my experience). I had no particular issues with it, no side effects, no withdrawal problems. There are other safer alternatives - multec, something like that - but they're not as effective. I'd ask my doc about that - I would've but didn't know about it at the time.

Good luck going forward, let us know what you decide.

Catie B  Nancy, I do understand that Amiodarone is an onerous drug, but I was also told it's the most effective one available for arrhythmias. I took it nearly four months.

Debbie Chatzky  Had Mitral valve replace and maze 2 weeks ago. Was put on amiodarone in hospital and sent home with it as well as metrpolol. So far it’s giving me a cough and some breathlessness.didnt realize it could affect thyroid. Heart rate is stil 85 to 95 resting.they have me stopping it next week. Nervous to be on it nervous to get off of it.

Rose Madura  I had a lot of complications and was on it for a while. I had a lot of problems. I had coughing (constant) and dizziness. Also, long term, my eyesight was affected. On my fourth readmission, I refused it in the hospital. At that time I had 3 different doctors tell me I needed to be off it. They did put me on Multaq for a couple of weeks. It is a very expensive drug but with less side effects. I had a coupon the hospital gave me i I didn't have a copay. The eyesight change was permanent. More nearsighted. So my advise would be discuss it throughly with the doctors. It does work. It is effective. But there are definitely side effects.

Mark Wilbur  Hope you won't have to be on it for very long. My wife's afib was diagnosed when she was in the hospital for a non-heart related issue 19 months ago. Her cardiologist has had her on amiodarone and metoprolol ever since, reducing their doses as time went by. The amiodarone may soon be replaced with another drug. My wife says that she has never had any side effects from the drug except for noticeable thinning of her hair.

Janet Skinner  I came out of the OR post OHS with AFib which proceeded to another rhythm that required a permanent pacemaker. I remained in AFib; then AFlutter for 4 1/2 months and was finally prescribed Amiodarone mid December. Other drugs didn't help. I "loaded up" for two weeks on 800mg of amiodarone and then had a cardioversion just before New Year's. My heart has stayed in normal rhythm since then; I stayed on amiodarone at a lower dose until early April and then came off of it because of the side effects.
Side effects for me were nightmares, insomnia, fatigue, constipation and thyroid issues (I have a pre-exisiting thyroid dysfunction so wasn't surprised by this last side effect.)
I also had to take a lower dose of warfarin and go for weekly INR test because the amiodarone can increase the warfarin reaction.
Amidoarone is a powerful drug. No doubt about it. It CAN have side effects for SOME people (according to the literature and what my cardiologist indicated.)
BUT ... it worked for me. I was miserable in AFib and was extremely symptomatic. Basically, couldn't do much of anything. If I had to, I would go through the same regime because I have more energy now than I've had in several years. :-) Staying positive that my heart rhythm behaves. I'll go for a 24 hour Holter monitor and pacemaker reading in early July.
Best wishes.

Nancy Surprenant Takahashi  Thank you all for your input, it helped me understand a lot. Seems like it's a tough drug but it works. I have decided to move forward with it, I'll be cardio converted on 7/6, hopefully, that will put an end to all of this.

Marie Myers  They are two different purposes. The ligation procedure closes up the atrial appendage which has a tendency to cause clots by pooling blood. It does nothing to prevent afib. The Maze procedure is an anti-afib procedure which works by interruption of the electrical pathways that cause afib.

Barbara Wood  I think they usually do the appendage tie off during the maze procedure, but each can be done independently as well. I had the appendage tied off along with a maze a year ago...so far no afib

Nancy Surprenant Takahashi  Humm, I had the maze but no mention of the appendage, I'll have to ask if they did that also. Thanks, did not know that.

Janet Skinner  I had the left atrial appendage ligation AND the maze procedure. In the year leading up to the surgery, I had two episodes of AFib that required cardioversion and I started longterm warfarin. I wasn't certain that the LAAL and Maze were done during the surgery - I forgot to ask my surgeon - but I have a copy of my medical records now and I had both procedures done during the mitral valve replacement surgery.

Susan Robichau  I went into afib at home 4/16, 11 days after my surgery. They kept increasing my metoprolol up to 75 mg X3 a day. I went bac into sinus rhythm on 4/18. Now on anticoagulants and although no afib I am now throwing tons of PVCs. Getting a stress echo next and need to wear an event monitor. The value repair was a success. Just hoping that the rest of my heart is ok

Rose Madura  Yes, I had three bad bouts of Afib. I am very symptomatic so it was very traumatizing. I had to be rehospitalized each time because in addition to the very high heart rate [180], my blood preuusure would tank [50/0]. But the good news is that in most cases, it will clear up on it's own in about 6 weeks. It did for me but during that time I was on high doses of Metoprolol and Amiodarone. Your heart has been through major trauma so sometimes Afib occurs. Your doctors know what to do. I hope it gets better for you soon. I know from experience how difficult it can be.

Janet Skinner  Hi Nancy. I went in to AFib the day after my surgery. I also had two extended hospital stays and spent a month in total in the hospital. In total, I was in either AFib or atrial flutter for 4 1/2 months.
But this was unusual. I had a previous history of AFib treated with cardioversions, and I also have a very enlarged left atrium.
It seems that most people who have post surgery AFib don't stay in this rhythm for very long.

Just keep on top of your symptoms and ask lots of questions. Don't be afraid to get a second opinion if you're not happy with your progress. The heart takes time to heal and post surgery, there is a lot of inflammation.

As I wrote above, I was allowed to stay in AFib and then atrial flutter for 4 1/2 months! I had a pacemaker inserted because my heart would pasue and then restart at a much lower rate. (My current cardiologist and the pacemaker tech were shocked that I was allowed to stay in this rhythm and like Rose, I am very symptomatic. In fact, one internist told me that I would be in AFib the rest of my life!! I didn't see him again.)

I pushed to see a cardiologist who specializes in abnormal heart rhythms: he prescribed Amiodarone in mid December and two weeks later I had a second cardioversion. Four months later, I am still in normal sinus rhythm and I no longer take Amiodarone.

Barbara Wood  Hi Nancy, sorry to see you're in AFib - that is no fun! I had the maze procedure along with my mitral repair almost a year ago. I had AFib about 10 days after I came home. There was an option to wait it out, wait for it to convert to nsr on it's own, but I chose to have an electocardioversion - afib really affects me badly. After that I was put on amiodorone for a few months. I've been in normal rhythm since - almost a year.

My understanding is that the maze takes about 6 months to heal to be effective. So I think you have to give it time before you know if it's been a success or not. What does your cardiologist say about your afib? Does he want you to wait it out? Wishing you the best...let us know how it goes, I know how tough it is!

Nancy Surprenant Takahashi  Thank you for your input. Meeting with surgeon next Tuesday. Right now they don’t seemed worried about it. Just concerned that if I stay in it they won’t be able to get me out. Hate to go 30 yrs like this.

Valerie Herndon-Vitarella  I only had a couple of instances. The first while still in the hospital lasted a few hours until the metoprolol kicked in. The day after I got home I had it for 10-15 minutes and that was all I experienced, but I stayed on metoprolol 25mg twice a day for about 9 months. If it persists, they can also do cardioversion. Hope everything went well with your surgery other than the a-fib.

Nancy Surprenant Takahashi  Thanks so much. I had it brefore surgery and they did maze. Now it’s back worse than bedore. On day 2

Rose Madura  Not sure. I did a urine test about a week before the surgery (same day I did the bloodwork) and they said it was to make sure I didn't have any infection. I'd call your doctor about it.

Susan Killian  Part of my problem is the opening is too big, he also needs to reshape the one leaflet and add the ring. They will use the ring for you too?

Meredith Bray  Have you read Adam's book? It helped my family and me immensely.

I also suggest reading "Coping With Heart Surgery and Bypassing Depression: A Family's Guide to the Medical, Emotional, and Practical Issues " by Cohan & Pimm.

Yes, nightmares, difficulty sleeping, crying jags. It's all part of the process. And you'll feel better sooner than you think you will!

Helen Daw  Yup, crying, anxiety, fear, nightmares... got them all. But i like to reassure you that it will all be ok. Just had my surgery last week and it’s s not that bad at all. The wait was the worst part. I was in the cardiology dept where they had tons of patients that had OHS and they all seemed to be doing great. I must have spoken to 10 patients and they all said the same thing that the waiting part was the worst. I know it is not easy but Hang in there.

Bonnie Stone-Hope  Hi Nancy,
I had an advantage since my Mom had the exact same surgery 20 years before me and did just fine. Her recovery was easy, no problems, no major discomfort, so I was very confident about the surgery itself.
So, no nightmares prior to surgery.

Biggest problem I experienced was trying to get enough sleep post surgery, as had to sleep on my back.

Nancy Surprenant Takahashi  Thank you all for your supportive words, it is very encouraging. Meredith, I'm going to check out the other books, I did read Adams book, maybe it's time for a reread. Again, thank you all.

Adam Brown  Staying busy helped me. I was finishing a class and working hard to get things squared away at work. I obsessed a little while researching like I think most all here have, but then I kept coming back to two points of faith:

1) Faith in my surgeon and team who do this surgery several times a week. I made a conscience decision to trust them.

2) Faith that God has my back and I and my family can trust Him no matter what the outcome. I found peace in Christ long before I knew I had a heart problem. So when I got to worrying, I would make a conscience decision to try and stop since he told us not to.

Nancy Surprenant Takahashi  Hi Troy, I felt better after I met with Dr Trento, I did feel some comfort despite the crappy situation. I could have my surgery closer to home but I wanted him so I travel a bit to Cedars. I think we are in good hands.

Barbara Wood  Hi Nancy, I had a maze procedure ( an ablation) along with my my mitral valve repair 8 months ago. I had a previous history of AFib & aside from having it again right after surgery - that's common- I have been in normal sinus rhythm since. So I am happy that I had it done ! If you've experienced AFib, then you would most likely want to have it done during your surgery, while you are opened up. They can do a mini procedure less invasively, but they tend to be less effective.

Nancy Surprenant Takahashi  Thank you Barbara for your insight. I had experienced afib twice and I thought it was trigger by an event, riding a bike and have a lot of high sodium foods on vacation that I typical didn't eat. So since i only had it a couple of time that I know of I was concerned about having a procedure done. It sounds like you are doing well. Thank you, you have put my mind at ease. Nancy

Phyllis Petersen  Welcome Nancy! One thing I've learned from this community is that it often has little to do with how well you take care of yourself. Hopefully, they'll be able to repair the valve. It isn't an easy procedure, but most people do really well after the initial recovery period. Good luck!

Celina Binns  Hi Nancy. I too had a leaky mitral valve with no symptoms, so I know what you are going through. In my case, the valve issue was genetic as my dad ended up having his valve replaced. This past summer I was recommended for surgery to repair the valve. My surgery was 5 weeks ago today and I have been amazed that it was not nearly as bad as I feared. While I am still not back to 100%, I am already able to do most things around the house and am back to walking more than a mile each day. My surgery was done by Dr. David Adams at Mount Sinai Hospital in New York. He was wonderful! Even if you can’t go to NYC, I highly recommend you check out their website as there is a lot of helpful information about mitral valve surgery options. The more you know, the less scary it will be. https://www.mitralvalverepair.org/content/view/64/

Michael Meyer  Nancy:

Had a very similar story very healthy with a long history of a murmur. I was symptomatic unlike you but I had been on a ski vacation vacation a month before without any symptoms. I became symptomatic with some strange heartbeat issue. Cleveland Clinic was able to repair in 2014.

You should not delay as it becomes severe you can of course have an enlarged ventricle which can all kinds of problems. They days of watchful waiting are over. There is data to suggest having the corrective surgery within 3 months. I had a very good experience with Dr. Gillinov with minimally invasive mitral valve repair via robotics (one of the best in the country). Celina mentioned Dr. Adams he was on my top 5 list there are specialists all over the country. I live in the midwest so defaulted to the Clinic. Take a look at my journal, it is very detailed. I also highly recommend getting a second opinion.

Nancy Surprenant Takahashi  Thank you all so very much sharing your stories and support, it really does help. I get to speak to the surgeon after the holidays. If there is any good news of this they didn't find any clogged arteries.

Nancy Surprenant Takahashi  Got my appointment to meet Dr. Alfredo Trento on Feb 6th. I've read a lot on him and feeling very good about my choice for a surgeon. Is it me or am I just a big baby about this whole thing? I feel very grateful to have access to wonderful doctors and there is a solution for this problem but can't understand why I cry so much a feel sorry and scared. Do most people feel "so much better" after all this is done?

Phyllis Petersen  Totally natural Nancy! It's a rare person who doesn't take a seemingly endless roller coaster ride of emotions while preparing for heart valve surgery. That's why this community is so important. This is not only a place for answers, but a place to vent and get the support you need to make it through.

Bonnie Stone-Hope  Hi Nancy, Normal to feel sorry and scared. When you are taking good care of your body, you do not expect to have heart surgery. In my case, it is genetic, as my Mom had the same valve replaced 20 years ago. I had no symptoms, not aware of murmur until last August, and felt great! Then, surgery. All good now, 5 weeks after surgery, and just very thankful my physician listened to my chest and heard the murmur before I had serious heart issues and symptoms.
Did not feel bad before the surgery so do not notice any difference now.

As my Mom did so well, I did not worry about the surgery. Perhaps that was naive, but she set such a good example of how to deal with it, I just followed her lead.