New Here - in need of a mitral valve repair

[KDD]

Hi All. I just want to start off by saying I am so thankful I have found this community. I am a 32 year old mother to a very active 19 month old, so having OHS in the near future is not on my TO DO list, but alas the time has come. A little history... I was born with an atrial septal defect which was repaired when I was four. During that surgery they diagnosed me with mitral valve regurgitation which has been monitored since with no change. Fast forward to last Wednesday when I discovered, after undergoing a stress test, that in fact my leaking MV has gotten worse and is in need of a repair. On Friday I had a TEE and today an arteriogram, both with favorable results leaning towards repair vs. replacement. I have not met with my surgeon yet, as he just got hired on at the hospital where my surgery will take place, his name is Evelio Rodriguez if anyone has heard of him. Anyways... he specializes in a minimally invasive approach, but after reading some posts on here that doesn't sound as great as I had hoped. Lets be honest IT ALL SUCKS! I have two main concerns at this point: If the repair is successful will I eventually have to have another surgery later in life considering I'm young and will I be able to have another child after the surgery? Any insight would be great and thanks in advance And did I mention my father just had a quadruple bypass and valve replacement in October which resulted in a two month hospital stay. So needless to say, with that fresh on mind I'm still in shock I too will have to go through the same thing so soon.

 

[Boston Tiger]

Welcome to the club. I think the two month hospital stay after surgery is more of an exception than the rule, since I headed back home just five days after my mitral repair. There are several posters on the site who have had their OHS during the last few weeks, and they were back at least as fast as that.

My suggestion would be for you to focus on the benefits of the surgery rather than what you actually have to go through. It definitely does not suck to be able to see your 19 month old grow up, because you have all sorts of adventures ahead of you there! I know with my repair, I've been cleared for just about any activity.

 

[Mom2izzy]

I am also in need of a mitral valve repair. Mine is being done by Dr. Steven Bolling at the University of Michigan. I found him on YouTube answering questions about mitral valve repair. Based on answers I have received from him:
1) There is no such thing as "minimally invasive" heart surgery. No matter how small your incisions are, they still have to OPEN YOUR HEART and to do that they have to put you on the bypass machine and STOP YOUR HEART. He didn't say this to scare me, just to assure me that it is something that he takes very seriously. He actually has a little soap box regarding using these terms to "sell" more surgeries, and he has done over 4000 mitral valves...he doesn't need to sell more. I asked him about the "robot", and he was very against that approach. Others have had it successfully done, but for a repair he feels the need to be able to FEEL the valve as he's repairing it. He referred me to several other big name surgeons who would tell me the same. I think I also saw similar info on Mt. Sainai's web site...they define some "minimally invasive" procedures, then say they don't use them...although I believe most will do mini-sternotomies or mini-thoracotomies...my surgeon actually let me choose between those.
2) If your repair is successful, you should NOT need future surgeries, and your life expectancy, etc. should be the same as any other person your age (barring any other non-mitral valve related medical issues).
3) It is my understanding that you can have babies as long as you are NOT on Coumadin/warfarin. With a repair or tissue valve, you will be on warfarin for some period of time (1-3 months??). With a mechanical valve you would most likely be on warfarin forever (I say most likely because there are some on-going trials, but I think even in those trials you need aspirin which is not allowed during pregnancy either).
DISCLAIMER: I AM NOT A MEDICAL PROFESSIONAL AND SUPPLIED THIS ANSWER FOR INFORMATIONAL PURPOSES ONLY. MY HOPE IS THAT IT WILL HELP YOU DEVELOP QUESTIONS TO ASK YOUR OWN DOCTORS.

 

[Adrienne]

I had a mitral valve repair at the age of 60 and was home after 5 days. Good luck!

 

[Lauratx22]

Sounds familiar! I am 31 years old with a 19 month old daughter. I had mitral valve repair surgery on Jan 30, 2012. My surgeon used the right thoracotomy and I'm feeling so much better everyday. I have never been checked before pregnancy so they said that my mitral valve annulus enlarged due to postpartum. Everyone says that we could have another child but I'm not chancing it and hubby and I agreed having one child is wonderful, considering I had to use fertility medication to conceive her! Good luck! We are here for you!

 

[ejc61]

Well it's good that they think they can do a repair over a replacement. Regardless of the technique used, it is invasive as it does cut the heart. My repair was done at the age of 47 and I was home in 3 days. It was my first surgery so I was scared also. It'll be ok.

 

[Mentu]

KDD, you will not "go through the same thing" unless your current condition and heart problems are the same as those of your Father. Your experience should be very very different. Also, you are young and strong and should expect a rapid recovery. I agree with the others that four or five days in the hospital is more likely to be your experience. Once your are home, you will be up and about immediately. You can expect to be limited in what you can lift while you heal but even that passes as the early weeks of recovery pass. It truly will be better than you are currently anticipating.

Larry

 

[scott.eitman]

ROBOTICS: I am sure not everyone is eligible, but many are. Robotics is amazing. I have talked with many MV patients at the CCF who are up and out of the hospital in about 3-4 days after robotic surgery. I think it is fair to say that none of the robotics patients I have visited even look like they have had surgery.

I know you may need to travel to get a robotics procedure done, but I think it would be worth the time and effort.

Scott

 

[Greg a]

A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters,(read no medical professionals) there are some minimally invasive surgeries as well so ask away, there is a wealth of knowledge here for the future ...............


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

ROBOTICS: I am sure not everyone is eligible, but many are. Robotics is amazing. I have talked with many MV patients at the CCF who are up and out of the hospital in about 3-4 days after robotic surgery. I think it is fair to say that none of the robotics patients I have visited even look like they have had surgery.

I know you may need to travel to get a robotics procedure done, but I think it would be worth the time and effort.

Scott

Scott it seems to me that this will also lessen the chance of deep infections ....win win

 

[johnp]

When I woke up after surgery (mitral robotic repair) I did not feel like I had "open heart surgery," even thought I had a repair and a maze procedure. I felt 80% immediately thereafter, and could do all normal activities, but it did take months to feel 95%+, which is where I am about a yr later. I guess its normal to be nervous, but in my case I had so many complicating issues leading up to it that i welcomed the chance that surgery might correct some of my problems - which it did.

Even if you are really nervous, when they prep you for surgery they usually give you something like ativan. I didnt need it, I think I gave it to my wife. When they hooked me up to IV, they ran something that certainly took the edge off, and then some. I think I was getting ready to request the A side of "Dark Side of the Moon," but then I think I fell asleep.

I probably should have had my surgery at 35, but didnt get it done until I was 48. But if I had it done back then I don't think they would have offered robotic. So now I have an incision scar under my arm that no one really notices.

Getting all 4 wisom teeth out at the same time was easily much worse, at least the first 2 days after.

 

[Johnz]

I second Johnp and ejc61 in that I had a similar experience with the robotic approach to MV repair. I interviewed a top surgeon at Mt. Sinai who insisted that my repair was challenging and he felt it should be done with full open chest approach. But then I interviewed with Cleveland Clinic where they have really pioneered using the da Vinci robot for this procedure and they were equally confident of success and a quicker, easier recovery. I went with my gut to Cleveland, but in truth I couldn't find anyone to give me an impartial or truly informed tie breaking opinion. Everyone has biases. In any case, my experience was literally great. I was out in 3 days and touring an art museum on that 3rd day. I was exercising vigorously in less than 60 days. At the end of the day, however, what matters is not the scar or the extra recovery time, but getting a good repair that will last a long, long time. Best of luck.

 

[Garserin]

When I woke up after surgery (mitral robotic repair) I did not feel like I had "open heart surgery," even thought I had a repair and a maze procedure. I felt 80% immediately thereafter, and could do all normal activities, but it did take months to feel 95%+, which is where I am about a yr later. I guess its normal to be nervous, but in my case I had so many complicating issues leading up to it that i welcomed the chance that surgery might correct some of my problems - which it did.

Even if you are really nervous, when they prep you for surgery they usually give you something like ativan. I didnt need it, I think I gave it to my wife. When they hooked me up to IV, they ran something that certainly took the edge off, and then some. I think I was getting ready to request the A side of "Dark Side of the Moon," but then I think I fell asleep.

I probably should have had my surgery at 35, but didnt get it done until I was 48. But if I had it done back then I don't think they would have offered robotic. So now I have an incision scar under my arm that no one really notices.

Getting all 4 wisom teeth out at the same time was easily much worse, at least the first 2 days after.

Johnp, may I ask who did your robotic valve repair at Mayo?