I am scheduled for open heart surgery the 3rd week in August. I have severe mitral valve prolapse with regurgitation and have also developed cardiomyopathy. They are going to attempt to repair the valve. If they cannot they will replace it. I am very nervous and just wondered if there was anyone out there that has already undergone this surgery. I am a 40 year old woman with two young children. I am worried that something may go wrong. Looking for support...

Hi Stevie,

It's a scary thought isn't it? Here is the only help I can give you: I have researched all this because I am looking at Mitral Valve replacement within the next few years because of rheumatic fever. With the technology they have today it is VERY possible they can do re-pair on your valve. Best case scenrio because they won't have to open you up. IF they have to replace the valve.....(and everyone I have talked with tells me this) You will be amazed how much better you feel once you recover from the surgery. Do you know you are tired? Maybe you don't realize it. They tell me you get all your energy back that left you SLOWLY.

Of course it is still surgery on your heart and there is no way to minimize that fact. I am scared too. I am 43 years old. I wish you the best, and I hope you keep me updated on how you are doing. I will keep you in my prayers!
Mileena

Hi Mileena,

Thank you so much for responding to my post. I do realize how tired I have become. Just getting through the day is physically exhausting. It has been hard because I have had trouble keeping up with my kids and their schedules. I so much do not want this condition to impact their lives. The doctors told me I should feel better afterwards but I like the way you put. I would love for all of my lost energy to return to me.

I have not met anyone else who has already had the surgery so I very much appreciate hearing from someone who has talked to others that have been through it. Thank you for sharing with me, and for the blessing of your prayers.

Stevie

Hi Stevie,

I had severe MVR and dilated cardiomyopathy. Coronary blockage enlarged the left ventricle, and the enlargement skewed the valve opening producing an irregular shape. Also, an enlargement can affect the chordae tinde (cords that attach the leaflets to heart muscle wall). This condition can cause a prolapse of leaflets.

I get a sense from your post that the chords are elongated causing a prolapse of the leaflets and MVR. That in itself can cause cardiomyopathy.

A stent implant and medication has reduced heart size and MVR is less severe. Is your myopathy a dilated left ventricle? My information is there will be no operation option with an enlarged as that is considered too risky unless an emergency...a renown surgeon with Mayo Clinic who has done thousands of valve operations has stated he sees too many patients that wait too long and that puts them at a higher risk. Has cardiomyopathy been an issue for your doctor regarding a valve operation?

Hi Kenkeith,

I have been diagnosed with MVP since the age of 7. Until the last few years it has not caused any problems in my life (now 40). About 2 years ago I was diagnosed with cardiomyopathy. At first the doctor felt it was unrelated to the MVP. Now, after further testing, he believes it is related. My case was a little unusual in that when I was diagnosed with cardiomyopathy there had been no enlarging of the heart. The doctor put me on Cozaar. After some time had passed we learned that my heart was getting weaker so the doctor recommended surgery. I went to Tuscon for a 2nd opinion where I was told that the MVP did not "sound" severe enough to warrant surgery. That doctor put me on Coreg. 2 months later another echo revealed that the heart had started enlarging (left ventricle). My doctor feels this is the prime time to do the surgery as he fears waiting to long could be detrimental for me. The hope is that they can repair rather than replace the valve (due to my age) and that the cardiomyopathy will stablilize or possibly get better. They have scheduled the surgery for August. I just felt a little unsure because of the difference of opinion between my regular cardiologist and the one in Tuscon. I mailed CD's of my angiogram and latest TEE to Tuscon to get confirmation on his view. I hope to hear from him soon.
I have not met anyone else who has had open heart surgery. I thought I might feel more comfortable if I had recieved information from someone who had actually been through it. How was it for you? How was the recovery? How long ago did you have it done? How long did it take for you to be able to perform regular activities of daily living (showering, housework etc)? Are you currently taking coumadin? I am so frightened of the surgery itself, and apprehensive about what the recovery will be like. I wonder if if will even work, I pray that it will. I would love to feel better.

Stevie, at your age you should have a fast recovery. There is a lady who has posted and had valve surgery a year or so ago. She is very pleased with the outcome and was feeling well within a few months. It is normal to have anxiety, but according to statistics the risk for a favorable outcome is very high.

You have had a valve problem for years and there usually comes a time to correct, and I believe an enlarging left ventricle is the time. It is wise to get a second opinion for peace of mind.

My situation is different. Three and a half years ago I was hospitalize with congested heart failure (lung edema, enlarged LV, blocked arteries, and severe MVR). At the present time, I don't have severe MVR and no symptoms. So there is a dilemma: Wait until there are symptoms or have an operation within a short period of time!? Doctor suggests wait...I have been thinking of getting a second opinion. Thanks for sharing your experience.

If you keyword valve surgery on this forum, you should be able to find some answers to your questions.:)

Kenkeith,

lung edema, enlarged LV, blocked arteries, and severe MVR).

Getting a second opinion is always a great idea. Good luck to both yourself and Stevie.
I hope you don't mind me asking. How does the lung edema manifest itself? I know it's off the topic but does one get a wet, squishy feeling in the lungs sometimes when lying down?

Flowergirl

Kenkeith,



Getting a second opinion is always a great idea. Good luck to both yourself and Stevie.
I hope you don't mind me asking. How does the lung edema manifest itself? I know it's off the topic but does one get a wet, squishy feeling in the lungs sometimes when lying down?

Flowergirl

Flowergirl, lung edema manifests itself for me and I believe generally starting with a violent dry cough, choking feeling, hyperventilation, gasping for breath and a feeling of not get enough air. Happened at night laying down and there was complete (as I remember) relief sitting upright for a few minutes. Two nights of the symptoms, I went to ER and diagnosed with CHF and MILD pulmonary edema. I was shocked...thought the problem was due to breathing dust from a home project. Maybe that triggered heart. failure :confused:

Thanks for the info, Kenkeith.

It's much appreciated. I'd hate to imagine what a full blown pulmonary edema would feel like!

I had mitral valve repair done in March of 2006 at the Mayo Clinic, MN when I was 62. My cardiologist did not recommend surgery at the time, but my rate of regurgitation was considered serious by their standards. After doing some reading of heart doctors researches, which stated that they felt it is much better to have the surgery before you get all the symptoms. This is what helped me make my decision to go ahead with the surgery. Ironically, my brother who is two years younger than me had the same surgery less than a year before me, but he had symptoms like getting tired for about two years prior but did not realize he was having heart problems. As a result besides having the mitral valve repair surgery he also had to have a pace maker put in. My recovery was quite easy. Prior to my surgery I was quite active with being a walker and working out in the gym. In fact, in the hospital they had a hard time finding me because I was always busy walking the halls. Forgot to mention how my dr. realized I was having a heart problem....she detected a very strong heart murmur which I had never had before. You will do fine, think positive and you will be walking down those halls also. Good luck!
Ruth