Mitral Valve Replacement--What do I need to know?

[Jazzniceguy]

My cardiologist has recently said I had to have my Mitral Valve replaced within the next five years--possibly as soon as a year from now. Everything I read about this scares me--I'm worried I wont survive the procedure, I'm worried I wont be able to sleep with the noise of a mechanical valve if I get one. I already stuggle with issues of anxiety and insomnia. Is there any advice someone can give me before I start this journey? Any advice I would greatly appreciate. Thanks so much.

Jazzniceguy

 

[Freddie]

Welcome abroad Jazz,
Research, research and more research and get copies of every test you have for your own records.
Try not to worry, as for the 'tick' of a mechanical valve, in most cases it's not much louder than a Timex watch in a quiet room and your body in time will get accustom to it. AND don't believe everything you read on the internet/doctors about warfarin - this is the best place to be for that topic.

 

[Mentu]

JNG, the anxiety seems to go with the package when we first learn about these problems. You might pause and consider for a moment that my experience over this past year led me to the discovery that none of the things I worried about happened. You say you are concerned that you will not survive surgery. Unless you are ill and have other serious conditions, your likelihood of surviving surgery is probably in the range of 98-99%. I was 59 last year when my valve was replaced. I had no other heart problems and have always been pretty healthy. Before last year, I had never been in a hospital for more than a day. Surgery proved to be no problem at all with very little discomfort and recovery was anticlimactic. So, What would you like to know?

Larry

 

[ALCapshaw2]

Welcome to our World JNG !

Take a Deep Breath, or two, or three, or...

Now, Give Thanks to whatever you believe in that you live in a time and place where Heart Valve Problems can be FIXED with a High Probability that you will live to a Long and Healthy Lifespan. You might also be grateful that you found US for inspiration and support Note that every member on this website, or another family member, is a SURVIVOR or soon to be survivor of this Life Saving Procedure. If we can do it, SO CAN YOU !

As previously mentioned, you need to get copies of ALL your Test Reports which will provide you with Lots More Information that your Doctor likely revealed during your Office Visit. Many of us have learned how to read and interpret our reports. It's not that hard. I plot my Echo Reports on a Spread Sheet for easy tracking and comparison.

My *guess* is that your condition is probably considered mild given the long range projection before surgery.
You should also be Thankful that it was discovered Well Before it became Critical which means that your Doctors can track it's progression safely and let you know when "it's time".

In the mean time, feel free to browse around the various forums to learn more about the experience of others and also feel free to ask ANY Questions that come to mind as your learn more about the process.

Feel better yet?

'AL Capshaw'

 

[Adrienne]

Welcome. Is your cardiologist sure it cannot be repaired. I would try to find a surgeon who does a lot of MV repairs, as this is the best option if an experienced surgeon can indeed do it.

 

[Marcia58]

Good point Adrienne!

Jazz, I had a mitral valve issue for years, and was told in the spring of 2006 that I would need surgery "eventually". That day came on March 26 of last year, but my surgeon was able to repair my own valve. I am not on warfarin and they aren't predicting any further surgeries.

I see you're in the Chicago area. You should check with Dr. Valuvan Jeevanandam at the University of Chicago Medical Center. He did my surgery.

Now what else would you like to know? Ask away!

Marcia

 

[jax]

I would also think you should ask your cardiologist if your mitral valve can be repaired. I would think that it would be in the mild stage so why not ask about it and then maybe you wouldn't have to get a mechanical valve. I had my mitral valve replaced 13 months ago. The experience was definitely scary and i can relate to the anxiety and insomnia. This website and all of the member's really helped me through it. My husband and I didn't talk about it much as I think that he was as scared as I was. He wouldn't talk about it when I tried to. Anyhow, I found this website and it was truly a godsend. I could ask all the questions I wanted and everyone here knows what one goes through from the time that they find out that they need surgery and also everything afterwards. From being on coumadin to any other questions you might have. If you do end up with a mechanical valve you will hear it here and there. And there are some people that notice it more than others. I went through a stretch when i could here it over the machines at work if i tilted my head a certain way. But i have to say that it has been quite a while now that i don't notice it at all. While coumadin takes some time to get regulated, it really isn't a big deal. You will learn that although they say to stay away from green leafy vegetables like lettuce and brocolli that contain vitamin k that as long as you keep it consistent and don't overindulge too much that the doctor could make adjustments to compensate for your diet. This is definitely a great source of knowledge regarding coumadin and regulating it. anyhow welcome to the forum and ask as many questions as you can think of.

 

[Mileena46]

The most important thing you need to know...is that you WILL get through this!! I am almost one yr out on my Mitral Valve replacement. My doctor also told me I would have possibly 5 years before surgery.....I made it about 2.5! I remember how scared I was...(I will never forget)...but trust me....it isn't as bad as you think...AND a lot of the anxiety you are having is CAUSED by your valve! Even Mitral Valve Prolapse can cause anxiety and panic attacks!! Try and stay calm.....you will get through it and on this website is a great many people who will help and answer all your questions. This place was a life saver for me!!

Mileena

 

[ejc61]

Hello Jazzniceguy,

I think it's important to know what your situation is. If you have MV prolapse with mild, moderate, severe regurgitation for example. Also, there are several methods. Not all have to be replaced. They can also be repaired minimally invasive or even robotically.

 

[Harmony]

I had my Mitral Valve repaired a little over a year ago. I inte viewed surgeons until I found one who would do a repair . I had very severe regurg and many sugeons would
only give me a maybe. Dr Galloway told me it would be a repair and it was. As for being afraid I was terrified. I canceled my surgery 3 times. You have received good
advice here about looking for a surgeon who will do minamal invasive surgery. Dont be afraid we have all here been through heart surgery and we are here and nso will you.

 

[Luana]

Hi Jazz,
I'm wondering why you would think you might not survive the procedure? Mortality rate for valve surgery is usually 2% or lower. As for the surgery, I would check your local area hospitals and see if any surgeons are using the da Vinci robotic-assisted surgery for mitral valve repair. It's a very minimally invasive procedure with a few small keyhole-sized incisions, a vast difference than the traditional sternotomy. Healing and recovery are supposed to be quicker, too. Here's the da Vinci site if you haven't already seen it: http://www.davincisurgery.com/cardiothoracic/cardiac-procedures/

If your valve cannot be repaired, you may still be able to qualify for a minimally invasive procedure, with an incision between the ribs. As for the noise of a mechanical valve? Well, I have a mechanical aortic valve, not a mitral, and don't know if there's a difference in how it sounds. I only hear my valve at night when I'm in bed; I sleep on my side, so hear it slightly in my ear. It's actually quite a bit less noisy than how my valve sounded before surgery, and it doesn't bother me a bit.

I think we're all scared before surgery. The more you learn about what it involves and how it will help can set your mind at ease a lot.

 

[Marty]

Another caveat- don't delay too long. Don't wait till you have symptoms from a dilating heart and congestive heart failure. See a good surgeon soon. They complain that cardiologists don't send them the patients soon enough. They want to operate while you are still in good shape. I went under thinking I would wake up with a repair. My surgeon said my valve was so chewed up a repair would last less than two years. I got a St Jude and love it. I was 72 and now 83 with still a small normal heart No symptoms at all. Valve clicking? Just for a short term and even that wasn't bad. My wife liked to put her head on chest and listen- now she can't hear it at all. Warfarin- no problem, we'll teach you how to self test and eventually self dose if you wan't to learn.
Be positive! Marty

 

[ALCapshaw2]

I hope JNG comes back to read all the informative posts that have been made since his last activity on the forums 5 days ago.
I often wonder why some 'Newbies' post to the Forums, never reply, and often just 'disappear' soon after their original post.

 

[Luckyguy17]

I hope JNG comes back to read all the informative posts that have been made since his last activity on the forums 5 days ago.
I often wonder why some 'Newbies' post to the Forums, never reply, and often just 'disappear' soon after their original post.

Al, I gather you have seen that happen on more than one occasion and it would be sad when it happens and even worse if it was a personal email....gone to neverland
The good news is there are many other active and invloved newbies that do reap the information of forum postings and the members posting do also in many ways get some benefit as well, so when it happens it is not all lost.
But for folks like yourself that have been on, contibuting and active for several years, I can only imagine how many times you must have answered the same question, over and over again and taken the time to elaborate to give the new member a personal welcome.
But i fully agree that it is really nice when the thread poster does acknowledge receipt and reading the thread and interacts.
Gil

 

[Helena]

Hi Jazz,
It is very scary when you get told that you will need surgery, especially as early as a year. I was told the same and within 17months I had my Mitral Valve replaced and my Tricuspid Valve repaired. I was absolutely terrified!!! But I made it and so will you!!!
The ticking of the mechanical valve takes a bit to get used to, the first night off the heavy drugs I lay in bed and thought my husband had brought us a new alarm clock??? After a while you stop hearing it and the funny thing is,everyone else can(hehe)!!!
The anxiety and insomnia I had pre op is still with me, I am on medication to help it though and it helps.
I hope this helps you even if just a little. Take care and all the best

Helena

 

[georgeh]

if you dont do the repaire or replacement your gone. that is watt i was telling my self before my surgery.