New here. Really scared need answers.

[oopsyadaisy]

I was dignosed with mvp when I was 24 and thought nothing of it because the doctor wasnt concerned.
I had an echo done about 4 or 5 months ago, if that and my echo was fine as usual. I insisted to see a heart specialist though because I would get out of breath here and there and it concerned me. The heart specialist reqauested me to get another echo. I told him I had just had one but he said he wanted another. I thought fine and had one done. When I went in to see him again about a month later he looked at me and asked me what I had done. I was confused and he told me that it looked like my valve had blown up. He said he was sending me to see a cardiologist and I would be needing surgery to have it dealt with. I was in shock and started crying and he did nothing to tell me anything. All he said was something about a flower that goes inward and outward.
When I left there I was afraid I was going to die any second. I stopped exercising and cried and cried as I lay on the couch waiting to die. Friends told me to get a second opinion so I demanded another echo with the receptionist because the heart specilist wouldnt see me. I looked at it and I just dont understand what there talking about this flower business. I know that I feel a pain in my neck a lot lately. I have no info on this and I live day to day waiting to die. I never had any real symptoms and now I just have deep depression. HOw can it go from fine to crazy in a few months? I keep trying to figure out what I did to cause this. What valve is gone? Does anybody in here able to help me? I see a cardiologist on monday but dont know what to ask or anything. Could it be a mistake?

 

[oopsyadaisy]

Also

Also

I live in canada b.c. near vancouver. Id also like to know if anyone in here can recomend a good doctor.

 

[Karlynn]

Welcome to our little group. You came to the right place. First of all, take a deep breath..........

2nd - many people will be along to help, but it will be a little slow since it's the 4th of July weekend and I imagine many people are busy.

I was diagnosed with MVP when I was 22. I had no problems with it until my 2nd pregnancy when I was 26. I'm now 45 and have had my mechanical valve for over 12 years. I lead a very busy, full life.

The doctor was very irresponsible in describing your valve to you in that way. If it had "blown up" you wouldn't be alive, or would have had symptoms that landed you in an ER and emergency surgery.

Chances are great that you don't need to wait around to die (damn that doctor! ) If you are experiencing SOB (shortness of breath) and other symptoms, it sounds like your valve is probably worse than a normal valve, but there are many other symptoms that come with a failing valve before surgery is considered an emergency.

Are you experiencing any arrhythia (heart palpitations)? That can be common with MVP. I highly encourage you to get back to your normal routine. Keep posting here for reassurance. Let us know what you find out on Monday. But in the meantime - take a walk, read a book, rent a good movie, get off the couch (I've done that, it makes you gain weight!) spend time with family and friends. And for now, let tomorrow wait until tomorrow.

 

[ALCapshaw2]

Hello OOPS,

I'm sorry to hear you are receiving such poor and incomplete information from your doctors. Hopefully, if anything SERIOUS were occuring, they would have sent you straight to the hospital or at least referred you immediately to a surgeon. Since they did not, you *should* be safe, just don't over exert yourself. By all means, keep that appointment with the Cardiologist. Hopefully he will sort it all out for you.

IF you do need Valve Replacement Surgery, know that it is a very highly refined art with a Success Rate over 97% for all first time patients and even higher for those in reasonably good health (otherwise) and under age 50.

In the meantime, just keep telling yourself that there are nearly 1000 members here on VR.com and each member or a family member represents a Valve Replacement SURVIVOR. If we can do, so can you !

I don't know what more I can say to try to help you remain calm until your appointment Monday. I can imagine how you feel. We ALL had some 'apprehension' before our surgeries so you are not alone in that department. Take some deep breaths and try to think of something ELSE until you get your results.

If you have a copy of your Echo report, please copy those results to this forum and perhaps someone will be able to help clarify some of the information. Hopefully your cardiologist will do that on Monday.

'AL'

 

[Harpoon]

Like the others said, take a few deep breaths and let yourself relax a little.

You're not in "emminent" danger, if you were, you wouldn't have been sent home to lay on your couch (or whatever.)


I suspect the flower analogy was some poor attempt to describe your valve and the shape it's it.

You say ou have MVP, mitral valve prolapse. Basically, the valve isn't working as it should so blood isn't pumping as efficiently as it's supposed to. Most likely, some of that blood is moving backwards through the valve and that puts some strain on the valve and your heart in general. There are a few things to be wary off like fluid retention and over-exerting yourself. Try to stick as close as you can to your daily routine, what you were doing BEFORE you got the news from your docs. As long as you're not trying to do anything extremely run miles or power aerobics right now, you should be OK.

Watch your face, hands, feet, and ankles for sighs of swelling, that could be fluid retention. If it comes up you'll probably end up on some variation of diuretics, water pills. These just make you want to pee a lot more than normal about 20 minutes to an hour after you take them. A bit of a hassle when you first start out, but easy to deal with overall. The diuretics might also help if you're experiencing shortness of breath or a "fullness" feeling in your chest, it depends on what your heart's doing.


There's a LOT of information in here. Don't just read current threads and posts, read back into the archives some. Look for topics that sound of interest to you, maybe look through some of the bios that some members have. There's a LOT of people here who have or have had MVP just like you, it's fairly common in here (more so than my thing which was REALLY off the wall)


Got a lot of good folks here who will help you find the right answers for yourself.

Hang in here, we'll help however we can. =)

 

[Nancy]

Welcome to the site-

I'm sorry that you didn't get good information from your doctor. Perhaps the flower annalogy related to the leaflets of the valves which sort of resemble flower petals and open and close while regulating the blood flow within the heart, as the heart beats. Can't say for sure what the heck he meant by your heart "blowing up". Not a medical term that I know of.

But I will tell you that just before my husband had his first valve surgery in 1977, his aortic valve did what they called then "fish-mouthed", another excellent medical term , which meant, I would guess that the valves opened up but had difficulty closing entirely, allowing blood to flow back into the heart. This is not a normal condition, and needs to be corrected.

I won't tell you to relax, because without good information from your doctor, this will be difficult to do.

But I will tell you that this site is filled with people who have had this surgery and have done extremely well. We have people here with the full range of heart valve problems and even way beyond that. My husband has had 3 of them, himself, and he is still here and walking around.

The surgery is highly perfected. The surgeons are highly skilled. The mortality rate is somewhere around 98 percent to the good. Your pain will be managed well. You will be taken care of by the most skilled hospital staff. The recovery takes a little while, like any very serious surgery. But your body can and will recover. And you will have your heart problem taken care of.

I wish you all the best, and please let us know how your appointment goes on Monday. Oh, by the way, it is imperative that you know as much as possible about your own particular heart condition, even if you don't want to know about it.

Find out exactly which valve is the problem, find out what the cause of the problem is and ask for copies of your medical tests. With these things you will be able to do necessary research on your problems and find out how others have dealt with the same thing. Knowledge is power.

Never be in the dark about what medical problems you have. If your doctor balks at giving you information, insist!

 

[JimL]

"I keep trying to figure out what I did to cause this."

I wrestled with that question quite a lot as well. The answer is "Nothing." In my case, I was born with a bicuspid valve; there was nothing I did to cause it become bicuspid. The only case I have heard of where someone caused themselves to need a valve replacement was Ahnold Schwartzenegger, who worked out too quickly after replacement, and needed another -- I've never heard a full and reliable account of that.

You didn't cause yourself to need this; it just happened. Now you need a good cardiologist (one you can talk to, one who listens, one who explains) and a good surgeon, if surgery is needed.

 

[Mary]

Jim,
Here's what Shine on Syd posted about Arnold's surgery. This might be the answer.

" Day of surgery came and when I woke up Dr. Stelzer said we had to give you a porcine and could not use the pulmonic valve as it had a myxomatous (floppy/ soft) texture and would not be suitable as a replacement for an aortic valve. He felt that perhaps I have a congenital issue or I had an infection that caused the softness. He said that my aortic valve was also myxomatous . He further went on to say that Schwarzenegger had the same thing as me and they went ahead with his Ross. But Arnold's Ross failed and he had to be re-operated on a few days later with a porcine aortic valve. Stelzer told me that he had spoken both to the surgeon who did that original surgery and the one who did the porcine operation. So luckily I gained from Arnold's misfortune and Stelzer's connections

Mary

 

[Marguerite53]

Hello "Daisy"

Sorry to hear of your confusion and fears. I think you are finding that there are many people at this site who can help you to think more clearly and move ahead more effectively.

I am now in waiting mode. I have known of my bicuspid aortic valve for about 25 years. I was given good instructions and followed them, but alas, even that did not help me make it to the 75 year replacement as promised! I'm 50 and will be facing AVR in the next 2-3 years.

When you go to your next appointment, see if you can get a friend to come along with you. Preferably someone in the medical profession or someone who has some experience. They can be an extra ear as you wade through all these new terms and definitions. They can help to keep you calm and attentive. They can be your support and feedback after the appointment.

Write down some questions beforehand. Write down answers while you are in there, if it helps.

Do not let them close you out of your effort to gather information. I sought a second opinion when I felt that my first simply did not want to connect with me. The second cardio balked at my querries at first. She admitted that I seemed nervous and fearful and did not want to feed my anxiety. I looked her right in the eye and said, "what's making me anxious is my lack of knowledge. My lack of knowledge is making me unable to feel as if I have any control over this. I need information so I can understand what my choices are. I need to be able to understand so that I can tell my family that I am going to be okay." After that she was marvelously open and helpful. She told me everything she was doing and why. She even described what she was hearing through the stethescope; that she was listening for the sound of my valve closing -- a very important thing. So simple to her, yet so comforting for me.

Do get copies of all your reports. There are many websites which others will send you to (who are better organized than I am) where you can learn how to decipher all the techno words. I wish I had had some baseline information, from 25 years ago, though it's probably only for my personal interest at this point. These guys know what they are looking for.

I live in Oregon. The sun sets and the moon rises about the same time for us, I think. Know that you are not alone in all this!

Vancouver BC is one of our favorite places. All that green glass!! Just a gorgeous, exciting city. Very modern. I'm sure there are highly competent doctors and I'm sure you will find one.

Take care and good luck!

Marguerite

 

[Debrinha GT]

Go For It!

Go For It!

hello new comer, it seems that the others have been able to put your mind at ease by now, but I'd like to say something too. Once you get a doctor you can finally trust you'll see that you'll be able to come to terms with your new situation whatever it is. I think you were caught off guard and as well as that, you were very unlucky with the doctor who gave you the news, worse than that, couldn't or didn't want to explain to you what was going on which has made you twice as anxious. I think that once you get to understand what this is all about, you'll manage to deal with it and you can be sure that we'll be here waiting to help you cope emotionally. Good luck and take care!

Debora from Brazil

 

[tobagotwo]

This is scary when you first hear it, but once your feet hit the ground and you feel like you are getting control of some things, it will become easier to handle.

The neck pain is fairly common in women as a sign of angina, as is jaw pain. Most of us felt angina in some form before we had surgery. It means your heart is under stress, but doesn't mean you're about to drop dead. Many with valve issues experience it for years before surgery is done.

As far as the flower, it sounds as if he were trying to describe the way the valve works. The squeezing of the heart muscle pushes the blood through the valve, causing it to open up and let the blood through. When the pressure of the heartbeat stops, the valve goes back to its normal, closed position, preventing the blood from sliding back into the heart. I suppose it could be likened to a flower that opens during the day, then closes each night. Whatever he meant, having just been told you needed heart surgery, you were likely not in any condition to listen to clever analogies.

One approach is to get copies of this echo, and the one from five-six months ago, find a second cardiologist, and get a second opinion. They are required to give you copies of all of your medical records by law (there may be a small copying fee), so obtaining them should not be difficult.

If the second cardiologist agrees, you might want to start considering a facility that does these procedures frequently, a valve type that you feel suits your needs (i.e. tissue or mechanical), and a surgeon who has a good record for success with the type of surgery you are looking for. If you are seeking specialty surgery, such as minimally invasive, it may take longer to find a surgeon with the qualifications you may wish.

There is a great deal of discussion about valve types available on this site. It is a very personal choice. Recent statistics show that the risk for either type in the aortic position is about the same. It is arguable that that logic could also be applied to the mitral position.

Best wishes,