“Is Mitral Valve Prolapse Fatal?” Asks Herbert

Hello Herbert. I was diagnosed with MVP six years ago and my wife has known about her MVP since 1982. Thankfully, she remains asymptomatic with only mild regurgitation. Many people remain that way for their entire lives and I hope she’s one of them. My situation however, was different. I was experiencing skipped beats at that time, which I later came to understand were PVC’s or preventricular contractions. They can be caused by a few different things, and by that time my prolapse had advanced to what the doctors term “moderate regurgitation”. At 46 years old, the backward flow of blood caused by the prolapse was exerting extraordinary and undue pressure in the chambers of my heart, causing the PVC’s. The muscle was starting to enlarge as well. I was told that one day, I would require an operation to repair or replace the valve. Of course I asked how I would know, and was told “we can’t tell you that, it could manifest itself in many different ways, but you will know when it’s time”. Consequently, the doctor changed my beta blocker which I was taking to manage my hypertension, from atenolol to bisoprolol and added an ace inhibitor, Altace. I started taking a low dose aspirin daily per instructions and went twice a year for an echocardiogram to keep track of my heart’s enlargement. Three month’s ago, while on a business trip to San Antonio and running to catch a plane, I started to have difficulty breathing. Slowing down to walk didn’t help and I found myself having to stop and rest every 30 yards. My ankles were severely swollen with edema. The next day, an echo showed that the prolapse had advanced from moderate to severe and my tricuspid valve also started to leak because of the additional pressure. It was time for surgery, and I was told that I was a candidate for repair instead of replacement. I did extensive research about valvular disease and learned that a properly reconstructed human valve can function as good or better than ever before. You can also avoid taking coumadin or other blood thinners for the rest of your life and the likelihood for a re-repair is very low as long as the initial surgery is performed competently. My problems ended on July 7th of this year, when I had both valves reconstructed by Dr. David Adams at Mt. Sinai hospital here in New York City. Two days after surgery, my heart became arrythmic with what they call atrial flutter; a common occurence in about 30%- 40% of valve surgery cases. I was given blood thinners along with amiodarone, an anti arrythmic drug and went through a cardioconversion three weeks ago. Conversion is an outpatient procedure, they put you to sleep for a few minutes and shock the heart. This causes every cell in the muscle to contract at the same time and once accomplished it’s like rebooting a computer…the heart enters normal sinus rhythm once again as all the cells contract in unison. I’ve been ticking away perfectly ever since. Is MVP fatal? Perhaps, but clearly it doesn’t have to be. You’re aware of what you have and you need to recognize that the disease could advance at any time. You must remain aware of what your body and your heart are telling you. If it comes down to surgery for you Herbert, do not despair! Four weeks after surgery I was back at work. I’m now seven weeks out and feel about 85% healed. Thanks to my surgical team and Adam’s book, the experience was much easier than I thought it would be. I still have some soreness in my chest, but every week that seems to improve slightly. I’m running up and down stairs now and my chronic cough seems to have disappeared. I wish you all the best.

My name is Tiffany and I am 28 years old. I was diagnosed with MVP in Jan of 2007. The only reason why I went and got an echo for proper Dx. is due to my sister passing away on December 4th 2006 of MVP. She was 7 months pregnant as well. So yes…MVP can be fatal. The doctors that I see state that MVP can not be fatal and for me to not worry about it, however my sister is proof that it can be. So, I take every precaution necessary. I have several PVCs daily and I can have them at any given moment. I can be sitting, standing, mad, happy, sad….it does not matter at all. I do not know how to go about handling the physicians and demanding that I see a cardiologist who will understand that MVP is serious. Please help as I have 3 kids and do not want the same thing to happen to me that happened to my sister. My sister was only 26 years old and left behind 2 daughters and a loving husband and family. Please help me to find something that will give me hope. Thank you. Tiffany

Hi lately I have been trying to get to the bottom of what’s been going on with me.
In 2003 I gave birth to a son, I had suffered with pre eclampsia and the birth was very stressful. Before this I was fine, from the moment he was born I would continue to worry about him, set my alarm to wake myself up just to know he was safe and that was when I was lucky to sleep, since then it has just got worse, I lay in bed every night worrying I am going to die, I get short sharp dull pains mainly in the left side of my chest that some times moves over to my right, I then get pains in my left shoulder and down my left arm and it really scares me, shortness of breath, tiredness and also the less sleep I have the worse and more frequent I get it. I have been to the doctor but because I was only 23 when I started going about these pains they told me it was panic attacks – Anxiety, but I just don’t believe that, these pains don’t feel like anxiety. If i lay on my left they get worse, the thought of getting up and doing my house work just tourments me, I usedto decorate all the time, be really proud now I just feel defeated. I feel like I am in a constant night mare like I will suddenly be struck with a heart attack. My son is only 5 and I am 27, I iant ready to go yet but what ever is going on it’s beating me. I keep going to my doctors but just get told the same thing, where should I go next. I have had no real tests apart from the norm blood pressure and lisenting to my heart but I dont feel cofident in that. I just need some help I want to enjoy my life again not keep worrying about when I am gong to die, I take anything to help me sleep, cocodamol is one of the them but have eased of them again and gone to kalms more healthier choice, I have quit smoking and am always battling with my weight. You guys have prob been where I am now, I just want to know if I am lossing my mind?? Thanks.

Tiffany,
I experience the same exact symptoms as you do. I am currently taking 50mg of Toprol XL and have been for several years now. The medication has definitely helped, but just recently I’ve had some PVC’s that have occurred out of the blue. Since it happened over the weekend, I called my cardiologist office and spoke with the doctor on call. He told me to take half of my medication in the morning and my regular dose at night, then schedule an appointment. Some triggers that cause my prolapsing are lack of or insufficient sleep, caffeine (which I no longer drink), stress, and dehydration. Can I ask something about your sister? Did her heart go into an arrhythmia? Like you, I also have children and am trying to educate myself as much as possible to be proactive about this.

In response to all of the questions and concerns above.. MVP does affect a lot of people, and YES it can cause sudden death. I know this first hand. At age 18 my Fiance was diagnosed with MVP and Marfan’s Disease. The doctor told him not to be concerned and to continue living his life as he normally would and gave no medications. Leaving himself and his family to think of this as “no big deal.” Two weeks ago Thursday my Fiance age 34, died next to me in bed. Before we went to sleep he had not complained of any symptoms and no signs. It was a perfectly normal day, and I woke up to his spuratic breathing at 3am in the morning and he had died instantly. The corner claims the cause of death was due to MVP. I’ve been doing a lot of research after this tragic event to find closure and one thing that I’ve learned is ANYONE diagnosed with MVP should NOT take it lightly! I’ve read up on so many other’s whom have had loved ones just die out of the blue with unanswered questions. Many doctor’s play this off as if it’s almost just a scratch but it IS alot deeper and more sever than it’s played off to be. If you have any doubts on your doctor and his answers concerning you or a loved one with MVP move on and go in search of one that will help you and not act like it’s alright to have this condition. IT IS serious, and I don’t care what anyone else tells you. MVP can be/is fatal! This should be taken seriously.

Kim,

Very, very, very, very sorry to hear of your loss.

My thoughts and prayers are with you, your family and, of course, your Fiance’s memory.

If there is anything I can do, please let me know.

Adam

Hello Herbert,

I was also from the Philippines. I had rheumatic heart disease diagnosed when I was 5 yrs old. I had my mitral valve replacement in the Philippine Heart Center way back on July of 2005. That time the only way for them to fix it is tru MVR. We also have difficulty when it come to operation expenses. I was under the Social Service Out patient program Category D in the PHC. With that my operation expensenses almost P20,000.00. But we can’t afford it so I wrote a letter and sent it to PCSO (Philippine Charity Sweepstakes Office. You need to put an extra effort and time to solicit for help. Last August 5, 2010, I jut had my double heart valve replacement. My 15 year old Mitral Metallic valve stopped a couple of minutes before they cracked my chest. I was totally in life support and very weak when they did the surgery. They found out also that my tricuspid valve need to be replace. My aortic valve have leak. I know since then when I had my open heart surgery in the Philippine Heart Center that both my aortic and tricuspid valve were already damage because it took me so long to have MVR. So my advise to you, if you have the way to fix your Mitral valve prolapse do it, or else it will damage the other valves. I went tru alot with my heart disease but I have strong faith in God that I will be okay…and I’m always is…! Right now I have new St. Jude mitral valve and a pericardial Tissue tricuspid valve. My cardiologist were hoping that my aortic valve work its way since I have two new heart valve now. I just happened to get in this website and read your post. I am hoping that I can visit Philippines next year!

hey adam,
my names Amy and im only 16.
I was born with a heart murmur, the mitral valve did not function properly causing back flow. I used to go every year to the cardiologist but a year ago when i went i was having early heart beats, she said it was okay to have them the odd time but i was having them very often. I had to wear a holter monitor twice now and it hasnt gone away or decreased. I also sometimes have pain in my chest and i told her and she said that it is something big and that i shouldnt be concerned. These pains were pretty bad though. I haven’t had the same pain in a while now but i still get slight pains sometimes. i will go see her again in two months and at that time she will decided if i need to go for any extra testing. My blood pressure is also high almost every time i go see her. People dont seem to concerned when i dicuss this with them but to me its hard not to be concerned. Although its nothing too serious in my case, like life threatening its still very scary for me. I’ve had it my whole life and its only gotten worse. Im only 16 and it scares me that my heart is gotten worse at only 16. I just would like to talk to someone i can relate to and talk to. People say i should talk to my doctor, and i do, but its not always that east to talk to her.
Thanks, and is there anything serious that can be causing these pains that she wouldnt have said, or thought of at the time? don’t worry about scaring me or anything either! haha I’ll be just fine!

thanks alot!. Amy!

Hi All,

My friend died this week of MVP, so its definately fatal.

I was diagnosed in 2010 having MVP, my husband passed away 4 months later and no longer had medical coverage. Financially I have not been able to afford coverage. My condition I feel has gotten worse, I have chest pain much more, fatigue and fainted last week and both my hands cramped up really bad.. I have a 16 year old who has already lost her daddy..

Hi Herbert. I was diagnosed with MVP last 27th of October 2015,I’m 28, year old, I am also a Filipino,and a teacher. I just want to clear my minds,if this illness can be an hindrance to my work as a teacher?Because as what my doctor said, I must free from stress. What should I do?
After my doctor diagnosed me with MVP, I searched a lot about this illness, I found out that this illness can be fatal.How I can live my life with my family with no worries about this illness?Some stories tells that their love ones died because of this MVP.