Eric's Journal

Jan McClain  DON'T EVEN THINK about not getting it done! I'm in exactly the same situation as you (aside from being eons older, I'll be 70 in September) , and have done alot of research on the timing of mitral valve surgery. You need it NOW, before your heart weakens to the point of NOT BEING ABLE TO RETURN TO NORMAL FUNCTION after surgery. If you're having a repair it is very important to have surgery performed by a surgical team that does a high volume of mitral valve repairs at a high volume hospital. I'm scheduled for surgery with Dr. Marc Gillinov at Cleveland Clinic on February 25.

Anna Jones  Eric, shortness of breath is a symptom. The biggest problem is that with severe Mitral regurgitation your body isn't getting enough oxygen. So your lungs are having to work really hard, and your heart is having to work really hard. The longer you wait, the more stress you are putting on your heart and lungs. The longer you wait the more chance of damaging your lungs and heart. Eventually you will cause enough damage that you risk heart attack, being on oxygen, being unable to walk very far. Don't let fear stop you from getting the medical care that you need. Have the surgery so that you are there when your 13 year old and 5 year old graduate college, get married, have your grandchildren. Life is long. Surgery is short. Sending best wishes.

Nancy D  I understand the fear and confusion in signing up for a scheduled date for surgery when you are hardly symptomatic. Shortness of breath is a symptom, as are skipped beats no matter how rare. It is huge decision, an glad you are not taking it lightly. I had a persistent cough, that was wrongly diagnosed as asthma, which had me sick, for over 2 years- also a symptom. Then came the day where I had an episode that scared me to my Primary Care Doc who is fabulous and listened to me. I was in a cardiologist office in 2 days and while waiting for that appointment my PCP ordered labs, EKG and Echo so he could see those reports.
The fact that the severe regurgitation had reached a point where it was evident my cough was blood flowing back into my lungs, deemed it necessary for surgery. I know you are probably not there, but severe regurgitation is an indication for surgery- as the risk for untreated serious complications do rise. My valve was beyond repair and I had a successful replacement surgery 19 months ago. I had hoped for repair which is preferred but doing so much better in so many ways.
Wishing you comfort and information needed to help you decide the best thing for you and your family....this site has a wealth of information! Welcome here !! Ask any and all questions you need.
Nancy.

Lauren Burt  Eric, I am 42 , am married, and have 2 kids as well. I had no symptoms and was in top shape when told of the severity of my condition based on a routine checkup! I was completely freaked out and all I could process was thinking I was going to die and my kids would not grow up with a mom!!
The truth of the matter is ... Yes it's terrifying but it is a very common procedure and the odds are in your favor! This was found out for a reason so I would strongly recommend doing it so you can live a long healthy life and be there for your kids while they grow up.

  Eric, I hope you and your medical team are able to make the decision that is right for you. I understand your struggle. I am 40 and have a 9 and 6 year old. I had mild symptoms from my bicuspid aortic valve (shortness of breath when climbing up stairs, periodic dizziness without excertion), but my cardiologist had a good point; she said that because I was so young and my heart was otherwise healthy, my symptoms would not be all that bad. She said typically when one is older, they experience more intense symptoms. I viewed this surgery for me as being a proactive step to protecting my heart. I wasn't sure I was "sick" enough to get the surgery done. I was given a 6 month window to get it done, but was told that my heart could decompensate in that time. My father (58 at surgery) waited too long for his aortic valve replacement and ended up with heart damage (slightly enlarged heart, afib that was unresolvable and sleep apnea). If you have multiple surgeons telling you that your test results are suggesting it is time, take that to heart (no pun intended). Ask them what they think your prime surgery window is and the pros and cons to waiting. Good luck with your decision.

Sophia Ridley  I'm 42 and have 3 & 6yr old. I'm 9wk post mitral valve repair. I want to see them grow up, if I left it I wouldn't have had the energy to enjoy them. Everyone here knows how hard it is. I viewed it that the quicker it's done the quicker I get on with my life!

Meredith Bray  Shortness of breath. Cold fingers & toes. Fatigue. Please take some time and really reflect on the past few years. Don't deny something is wrong simply because you've gotten used to it. I refused to acknowledge my symptoms until a few months before surgery, and looking back at the 5 years prior to surgery I was ANYTHING but asymptomatic. Post op I have vibrant color in my face, I am back to thriving on <8 hours sleep, I can walk up and down the beach for hours, and I don't need extra socks while sleeping in the winter, or gloves when it's 65 degrees in the warehouse. My opinion is to take care of myself before my health becomes an emergency.
-Meredith

Charles Haas  Trust your docs. Was in the same exact position, and didn't realize that I had symptoms until after my MV repair when my breathing had dramatically improved.

I'm sure others will say, and I agree, find a surgeon whom you have confidence in. The "bedside manner" of the surgeon is, IMHO, much less important than their skill and experience, and the skill and experience of their hospital and their team.

John Murray  Eric I'm writing to you from ICU. I had surgery on the 14th of January. I may be heading home on Tuesday Wednesday already. It was very difficult for me to make the phone call and set the surgery. It was almost impossible to do it. It was one of the best things I've ever done!! I had an aneurysm replaced and had my bicuspid aortic valve replaced. My sternum doesn't hurt at all. I used the situation to teach my adult daughter to face her fears in life. GET THIS DONE BEFORE YOUR HEART CAN GET ANY WEAKER AND YOU'LL FLY THROUGH IT!! I never thought it'd be this easy. Go ahead and set the surgery. Then enjoy your wife and children. Best of luck Eric.

Neil Collins  I'm 44 and was "mostly" asymptomatic prior to being scheduled for surgery. I was about to compete in another triathlon but was advised to put it on hold for now. I trusted that the cardiologist and the data coming from the echo were enough to put my trust in their hands. Following the surgery, the surgeon was even surprised at how "crummy" the valve was. Had I done the triathlon….who knows but I do know that I'm here now for my kids and will be for some time thanks to my cardiologist and surgeon.

Lilly Black  I'm with everyone here. GET IT DONE and PAST you! My husband and I were so wrapped up in the wait and the risk that we were constantly living in fear. You will feel so much better! I promise! not to mention the risks you are taking to prolong the inevitable surgery. I am proof. Yes it is scary but get it done! Good luck!

Wanda Mroz  Trust the doctors... they know what they are doing and looking at. I didn't have any symptoms either other than hearing my heart skip beats sometimes and some tiredness. Now, though, I realize how symptomatic I really was. My heart is so quiet now, it's amazing. I had more symptoms than I thought. What was the norm for me wasn't really. I wouldn't wait until the rest of your heart is taxed by this. But I do understand your concerns. Best to have it done and past you. Remember that in the future the procedures will progress to easier and better too so if you need something in the future it may be far easier.

Daryl McCallum  I interviewed a group of surgeons until I found the right one that I would put my life in his hand. I felt so comfortable with his group as I knew if something did happen that he would have 3 other partners to bounce stuff off of them. Thank god I picked them as when I was in recovery they found that I was bleeding out so one of the other surgeons within the group took me right in and opened me back up to find that the closing team had pinched an artery while wiring me back together and he fixed it with ease. I was so thnkful

Tim Goff  I was asymptomatic for years and then, bang! Swollen heart causing afib and I was hospitalized with congestive heart failure. Until a week before I was swimming several miles per week and working out in the gym. Took me 2 months to recover from the congestive heart failure and to get the afib under control and another month before I could go in for surgery. You are free to make the choice you feel is right for you and do the research to get comfortable with whatever decision you make. One thing is for sure- the leak will not fix itself, it will get either mildly or majorly worse causing other problems that will be even harder to fix.

Liz Burroughs  I also had MV prolapse and severe mitral regurgitation. I didn't really have any symptoms either. I went ahead with the surgery because I didn't want to risk getting any permanent damage to my heart. I would go ahead and schedule the surgery so that you can get your heart repaired and get on with your life.

Sophia Ridley  Eric - just in case you miss it , pls see link for Mount Sinai NY attached to my second reply for your other post. It's a good site for info and a questions to ask etc. Hopefully that'll be helpful. For me,
I instantly liked my surgeon and felt very safe. I googled him and the newspaper articles confirmed my thoughts.

Whitney Nelson  I would think so! I would not be comfortable with that at all! I would absolutely set up an appointment with the surgeon prior to pre-op!!

Sophia Ridley  Absolutely agree with Whitney. I would expect to meet the surgeon before pre-op (I met mine twice as first time was all a bit much to take it in). My severely regurgitating mitral valve was mostly posterior and repaired.

Not sure which hospital / surgeon this will be. To be absolutely confident I would also consider approaching a different hospital (many here can recommend - I'm in the UK).

  I agree with the others, you should definitely be able to meet with the surgeon beforehand. Make an appointment on your own. I made an appointment with a surgeon I wanted to see and another one showed up and tried to convince me that could do my surgery with a full sternotomy and when I told him that I made an appointment with the other surgeon because he could do minimally invasive surgery, he brought the other surgeon in. They do that kind of stuff. Be your own advocate.

Eric Guarin  Thank you for everyone's quick responses. My wife and I have been pretty stressed out lately with my condition. How was everyone's initial consultation, was the surgeon able to answer simple questions such as repair rate for your specific condition with an actual percentage and not answer such as things happen and it may need to replaced. I understand that the guy I was asking questions wasn't able to answer for the surgeon he was recommending, but when I asked how many surgeries/repairs of my kind that the surgeon he was referring had performed, the answer was "tons". So my wife and I pretty much left with no more information and not much more comforted that we were on track to getting my repair done. I'm have since had my cardiologist make an appointment with the surgeon that the previous surgeon recommended. I just hope this guy is able to answer my questions rather than make me feel rushed. Did most of peoples surgeons review the echo and TEE during your initial consult? What should I expect to happen during a good initial consult?

Elaine Cutri  Yes you should. This is not an emergency situation. It sounds like you have time to meet with the surgeon ahead of time. You need to feel that the person you picked is going to do the very best for you. There must be very good surgeons in the DC area. If not, try Cleveland Clinic. I went there from the Los Angels area to have an aneurysm repaired. This was the 3rd surgeon I met with. The first two in LA were nervous about the extent of the repair. Keep looking, the right one will come along shortly. Best wishes!

Lauren Burt  You absolutely should be able to meet and discuss with a surgeon before pre-op! I would seek a second opinion somewhere else.

Sophia Ridley  Hi Eric, my surgeon recommended that I researched my case on the Mount Sinai NY website as it's really comprehensive and specialises in mitral valve repair. I have no experience of the hospital or Dr Adams.

Here's a recommended list of questions, there's loads of other info available.

http://www.mitralvalverepair.org/content/view/88/

  Eric, I was chose a different surgeon than who my cardiologist recommended (not for competence as timing was better with the other). I looked up his medical license, where he went to school, board certifications, and information on the surgeries he has done. US News has data on hospitals and surgeries. I spent a lot of time researching my condition over the years and had enough personal experience with my family members that I went in and told them my wishes and they agreed with me. Cleveland Clinic offers all kinds of web chats and information. I got to send off questions to Dr. Gillinov who is one of the top valve specialists in the nation and he actually gave me the best rationale for why I chose my valve type. The better informed, the more empowered you will feel. If you have some time, get second opinions and only go with a surgeon who you are comfortable with. You may have seen this, but here is Cleveland Clinic's page on mitral valve repair: http://my.clevelandclinic.org/services/heart/services/valve-treatment/mitral-valve-mitral-valve-repair

There is a section at the bottom where you can submit questions. I would be interested in comparing answers from what you get back from them.

Wanda Mroz  Yes! I saw my surgeon twice and he was more than accommodating and patient answering all of my questions. I'd seek someone else!