New Here have questions about MVP

[bobbie416]

My 32 year old ddaughter has MVP with moderate regurgitation.
I am very concerned and she is too. Last visit was last week. She is a healthy young woman except for this. Had heart murmur detected at 6 . Other symptoms like fainting, etc. over the years but all attributed to panic until about 7 years ago.

Dr. told her she probably will have to have surgury in about 20 years! She went beserk. She is terrified and feels she has this
cloud over her head. I am concerned about the seriousness of the condition and if you can live to a ripe old age without eer having surgery if the regurgitation stays the same. Is that possible?

We will be going for the next echo in July- so we'll see. But many questions and fears. So many conflicting opinions.

She has two children. 3 and year and a half. I am worried about them too.

Thanks for listening too this mom and grammie.

bobbie

 

[MelissaM]

Hi Bobbie,

Welcome to the site! We will also welcome your daughter, should she choose to join and or read - it might help calm her down a bit to know she is in good company! There are many on the board in a virtual "waiting room". . .knowing that someday surgery is likely, but not knowing exactly when that might be.

Know that your daughter is in good company - many fine people have MVP with moderatre regurge. Some need surgery, others do not. A good friend of mine is just turning sixty with moderate regurgitation and has no surgery in sight.

Hopefully your daughter will get over the initial shock and realize that this isn't the end of her world, a death sentence or even a black cloud waiting to burst. It is a diagnosis - something to watch and be aware of as the years pass.

All the best,

Melissa

 

[Marty]

Surgery for MVP

Surgery for MVP

The surgical indications for MVP with regurge are based primarily on two findings on the echocardiogram. They are ejection fractionand diameter of left atrium.... These findings indicate if the regurgitation is bad enough to end in heart failure. A few years ago surgery was not done until the patient was in or close to heart failure. However many of these patients did not do well because even with a new valve the heart muscle was so badly damaged it couldn't recover.Now surgery is recommended early.If your daughters valve is not too badly damaged they can repair it and these patients do very well.

 

[Nancy]

Hi Bobbie-

Welcome to the site. This is a great group of people and you will find lots of friendship and support here.

If your daughter is being closely monitored by an excellent cardiologist and is having regular echocardiograms, that is the most important thing. She should also become familiar with her condition by doing research on it. This is very helpful because then you are an informed patient instead of just a scared patient. It's hard to read about things like this at first, but it really does help to minimize fears once the initial shock is over.

This site is a wealth of information on valve problems and it's a terrific place to start, plus you and your daughter can come here any time at all and ask anything you want. There is always someone who will be along soon to help you out.

As has been said before, many people have valve problems and never have surgery, some wait for a long time before needing it, and some have it much sooner. It sounds as if your daughter is in a watch and wait mode and may stay there for a long time.

Invite her to also come and join in. Take care.

 

[bobbie416]

Dear Melissa,

Thank you so much for writing so soon.
I don't know if my daughter will come on this - so is just trying to not think about this all right now and go on with life as usual.
I on the other hand, am the one who always wants to investigate every avenue and know as much as possible. I will pass on any pertinent info too her and maybe will visit at a later time.

I don't want to become obsessed with this as I have a tendency to do that when it comes to any health issues concerning my family~but I am a firm believer that we have to take control of our bocies and arm ourselves with as much knowledge as we can.

This is still a very confusing condition to me. Knowing when or if the time is right ot have something done is very scary to me.
And at 32 she certainly doesn't want any heart surgery. This has not evern been discussed since the Dr. has said it probably won't be fro a very long time- but one never knows.

Is there anything that HELPSslow down this regurgitation- anything she can do? I can't stand when I can't get some things to help a situation- I feel so helpless. This I fear may be one of those things we will have to just live with and watch.

I'll be asking you lots of questions as they come to me.

Thank you again for your kindness.

God bless,
bobbie

Thanks to all the others who were kind enough to answer me too. I am trying to figure out how to answer individually- but I am knew at this. Hope you get this.

 

[Ross]

Don't worry about answering everyone individually. We know where your coming from.

As for slowing the regurg down or improving it in anyway, not likely. About all you can do is have frequent check ups and make sure it's not progressing. Sometimes people will stay the same and sometimes people will go down hill very quickly. It's hard to say, so your best defense is those check ups.

One thing I can tell you, age doesn't have a thing to do with any of this stuff. There are folks younger that have had surgery and older too. Myself, I was 33 for my first and 40 for my second.

 

[bobbie416]

I am really getting nervous ! Somethimes a little knowledge can be a dangerous thing . I am just going to live my life and try not to worry myself into a heart attack. I suffer with anxiety myself and this is not good for me to constantly focus on all this I know.
I also have a hubby who has been ill since we were kids with Crohn's Disease- and not has afib problems so my plate is full all the time. I have been the caretaker since I have been a kid.

Thanks for the information. I can't believe so many young people have this. I pray she is one of the oners that progress very slowly.

Talk to you all soon I'm sure. I am trying to take a break for a little while.. you understand I'm sure.

blessings,
bobbie

 

[Birky]

welcom

welcom

Welcome to a great site with loads of information. I was diagnosed when I was 32 and had surgery at 55. I had mitral stenosis with regurg. Damaged by an infection. I had 4 pregnancies before being diagnosed and did fairly well for the last 23 years prior to surgery. I wish they would have went in sooner and maybe then I could have had a repair versus a replacement. The only thing that was bothersome was the fatigue and shortness of breath for the last couple of years prior to surgery. I feel like a new person now. I have more energy than I have had in 10 years. I didn't realize how tired I was before. When I was diagnosed, I had 4 children from 13 to 6 and worked full time. They put me on a beta blocker and daily penicillin so I would not get another infection. I think prolapse is a little different as far as infection. I really freaked out when I found out at 32 that I had a heart problem. After a while I settled down and tried not to think about it much. Went on with my life until things got worse. Good luck to you and your daughter. If I can be of any more help, please let me know. Marcia

 

[bobbie416]

Dear Marcia,

I can't stand the fact that she has a heart problem even though we have known for a long time- this last Dr.'s visit jsut made it so clear that it is a serious matter and she too has freaked out. She is such a sweet girl and very sensitive and also very scared of anything to do with operations - gets squeemish at the thought of it and terrified most of all that she will die from it.

What was the deciding factor in your getting your surgery? As you can see, I am really trying to get answers that are impossible since all of us are different and each case is different.

I dfefinetly have to take one day ata time and "accept the things I cannot change etc.."

Thanks again.

blessings,
bobbie

 

[Birky]

deciding factor

deciding factor

I had my annual checkup at the cardiologists on 12/05/03 and at that time I had an echocardiogram done. Couldn't do the treadmill since I had another bout of upper respiratory. Echo showed that the left atrium had enlarged. I really hadn't felt good for a while, I think most of the year prior going to the Dr. I was avoiding anything that would make me tired and just plain didn't feel good. Went to be tired and woke up the same. We then scheduled an angiogram and TEE for January. Did the tests and they thought the valve looked better than the Echo showed and more or less said that it could be done now or 6 mos. from now. We chose to go see the surgeon in the beginning of February and had surgery on 02/27 of this year. Both the surgeon and Cardiologist felt that it could be repaired. When he got in there, it had to be replaced. I think it should have been done sooner than I might have had a chance of repair. Oh well, I now have a St. Jude valve which ticks away nicely. I think once you all get over the intitial shock of learning that you have heart disease, you will be able to rationalize a little better. My theory was that at least it could be fixed and I could go on with my life. Just take one day at a time and it will work out. God Bless,Marcia

 

[Georgia]

Hi, Bobbie

Hi, Bobbie

I know how you and your daughter feel. As do most of us involved in this site.

At 30 I was diagnosed with mvp and was told it was benign and the only thing to be concerned about was using an antibiotic when having surgery or dental care. That was that.

Fast forward 24 years.

Last January I couldn't lie down and breathe - had to sit up all night with my pillow on a tv tray. That's when you lose all control of decision-making and they tell you that you'll have surgery sooner rather than later.

I'd have loved to have had the luxury of learning a bit about the whole subject prior to surgery. I didn't find this site until after surgery.

If my pcp had checked my history and used a little of his education I could have had a repair (most likely) and not had lv damage and not have a damaged tricuspid valve - the decision years ago to not alert me to the possible problems 20 years ahead put me in a lot of jeopardy.

So you and your daughter need to look at things and see what the problems may be in the future; and put the knowledge away and enjoy yourselves and her time feeling good. Further, she MAY never need surgery. But someone leveled with her, and she needs to understand that it's a good thing.

Good luck and keep visiting and we'll all be glad to answer your questions.

 

[Karlynn]

Bobbie,
Welcome. You are so very fortunate to have found us - if that sounds a bit arrogant it's because this site is full of wonderful, knowledgable people who speak from first hand (or caregiver first hand) experience.

I had my Mitral Valve replaced 12 years ago at the age of 32. I was in bad shape. I had a baby and a toddler to care for as well, so I know your daughter's fears. If this forum had been available back then, so very many of my fears would have been soothed. There is a fine balance to walk between informing yourself so much you get scared stupid, and being your own best advocate. You need to learn to filter and compartmentalize all the information you get. Kind of like the side-effects statements on prescriptions. If we all read those, we'd all be too scared to take prescriptions.

My first piece of advice - don't assume the doctor your daughter is seeing knows all. He may be darn good, but you never know until you check around. We've had people who had a doctor who said they were years away from surgery, and found out the situation was really different. And we have members in our waiting room, who we hope and pray will stay there.

This forum is full of people who live normal, healthy, active lives with heart valve issues. If your daughter is able to see that, she might not fear the future so much.

Welcome to the family.
Karlynn

 

[Abbanabba]

Bobbie, it's amazing to find how many people (young and old alike) are living with a heart condition of some kind, and many you would never suspect. It's not a "death sentance" and for a lot of people it doesn't even have a huge impact on their life.

After having open heart surgery when I was 5, I was told I was "fixed" and they wouldn't be able to do anything more for the heart murmer I would always have. It is only in the last 2yrs that I noticed myself slowing down (..I've always hated sport, but have still been a very active person..) and found out I will need valve replacement surgery later this year. Up until then, unless I told people I had a heart problem, they would probably have never known.

Interestingly enough (and back to my first point) since finding out I need this surgery, I've met several other people my age and younger who have murmers and regurgitative problems to some degree. One of these girls is probably one of the fittest and most active people you would ever meet (..and my parter, who has known her and played sports with her for years, had absolutely no idea!!..).

I think it would be very helpful if your daughter were to read some of the stories in this and other forums to put things into perspective; after all, ignorance and fear go hand in hand. It might also help her to find out just how much medical procedures are advancing in this field, and 20 years from now, it may be a relatively easy surgery to have (..open heart may well be a thing of the past..). I can guarantee that there are plenty of people here who would be happy to put your daughter's mind at ease.

Cheers
Anna : )

 

[Ross]

It is only a death sentence if it is not dealt with. That is the sure part of the whole thing.

I'm not saying this to scare the living daylights out of you. Just keep a check on it and should the time come to take action, be sure to take action. Doing nothing and walking away is going to lead you down the wrong road.

 

[ALCapshaw2]

Bobbie wrote:

"She is such a sweet girl and very sensitive and also very scared of anything to do with operations - gets squeemish at the thought of it and terrified most of all that she will die from it."

WHOA Bobbie (and daughter).

Remember, EVERYONE here on VR.com (or their family member) represents a Heart Surgery SURVIVOR whose life has been prolonged and enhanced by this life saving surgery.

While Heart Surgery IS Major Surgery, it is a highly refined art with a first time survival rate of 97% for ALL ages and even higher numbers for 'younger' patients.

The greatest cause of Morbidity and / or Mortality for your daughter would be to RUN AWAY from the problem and NOT deal with it when the test results iindicate it is time for surgery.

The BEST thing she can do is to be aware of symptoms such as
Shortness of Breath
Tiredness
Lack of Energy
Fainting / Passing Out
and,
have REGULAR Checkups (Echocardiograms), preferably every 6 Months) There are other tests which 'may' be called for to confirm / clarify her status.

Just remember, when addressed in a timely manner, Valve Surgery is a LIFE SAVING and LIFE EXTENDING procedure.

Without it, many (most?) of us on this board would NOT be here to talk about it...

'AL Capshaw' (MI, Bypass, and AVR Survivor)

 

[Andrea]

Welcome!

Welcome!

Hi Bobbie!

I am 32 and have a four year old and almost two year old daughters. I had moderate-severe then severe regurge. Eight months ago I had a mechanical Mytral valve put in. I understand your daughters panic. I also went through a bought of panic followed by depression. I was besides myself and thought (ok it sounds vain) I'm gonna die! I thought I would leave my daughters with no Mother and it tore me into pieces.
I spent hours online in desparation trying to find something or someone to help me make it through this. I went to Religious chats and senior chats as I thought I could find a friend there who might understand better. I sat up for a couple nights online sobbing at my computer hoping someone could help.
Then I found this board. I had never thought there were so many people going through the same thing and some were my age! I had a million questions and every single one of them was answered more completely and realistically than any doctor could have answered. I could believe the people here because they knew what I was going through. By the time I went into surgery I had the right kind of recliner waiting for me at home, the right post-op bras, ideas on how to relax, what to expect during and after surgery and most of all I had people who cared and knew what I was going through.
Please suggest to your daughter to read through some of the posts here. There are so many people here who can help her with any question she may have. And please feel free to give her my email if she needs someone to talk to. I have to admit with two little ones and a full time job (I'm working on a management position too that I may take a day or two to answer but would love to help with anything.

 

[BillCobit]

Timing of surgery

Timing of surgery

Hi Bobbie

I was diagnosed w/ murmur when I was 27, have MV surgery 2 years ago when I was 44, but as the docs and everybody here will tell you, the timing is different for each individual. Some people w/ moderate regurg never progress to the point of needing surgery.

Generally accepted guidelines for determining need for surgery are summarised in the following diagram:

I recommend getting copies of echocardiogram reports so patients can compare results to the guidelines and evaluate the reasonability of what they're told by their docs (I believe I avoided serious problems by doing this).

The following is the best reference I've found for understanding valve disease management guidelines:

http://www.acc.org/clinical/guidelines/valvular/3205p149.pdf

If this is too technical, start by reading MVP articles at the following site, which also provides excellent anatomy/physiology info, descriptions of diagnostic techniques, etc.

http://www.heartcenteronline.com/

It sounds like you're getting all worked up over this. I know you know this, but it doesn't help. Best thing to do is learn about the condition, be sure to get regular check ups, and don't ignore the reality.

Keep in mind that for many people, heart surgery doesn't affect quality of life (I'm lucky to be one of those). If you spend much time on these boards, you'll see that there are runners, cyclists, hikers, etc. who are very active.

Good luck!
Bill

 

[Marty]

Bill said it all!

Bill said it all!

Bill, You just said it all. For some people MVP with regurg goes slow. I was first diagnosed during an insurance physical in 1961. I really didn't become symptomatic and develop a roaring machinery murmur till 1997! At that time surgery was advised but I waffled because my cardiologist said I might last another 10 years without surgery. However after reviewing all the literature i went ahead with the surgery September 1998. I am so glad I did.
I really didn't realize how bad I was feeling. After a few months of rehab I began to feel so much better, full of energy and able to go back to work. I am now an advocate for early surgery for mitral regurgitation.If I had made the decision earlier I may have been able to have a repair instead of a replacement.

 

[BillCobit]

Marty sez: "I am now an advocate for early surgery for mitral regurgitation."

I share your opinion, Marty. I had opinions from "maybe in 10-20 years, cuz you're asymptomatic" to "maybe in a few years" to "now."

Procrastinating had appeal for obvious reaons, but I had LVD > 45mm and estimated EF of 50%. My research indicated that "now" was the right answer to avoid permanent and irreversible heart damage.

Always a bit of a gamble, but I'm happy to report that everything turned out well -- I'm on no meds, and have no activity restrictions.

 

[bobbie416]

After reading and reading here I have become less anxious about my daughter and MVP. I know this is a serious conditoon but I am putting it in perspective and learning as much as I can. I am making a file for her and when the time is right will talk with her and share what I have found out.

I am of the mind set of NOT putting one's head in the sand and being happy hearing what we want to hear. All options and opinions have to be weighed. Knowledge is power . But I guess ni the final analysis we just have to put our trust in a higher power that we make the right decisions and are led to the Dr.s that can offer us the best possible care.

I know it is a long way offf (July) but she is going for her next echo then. Could anyone tell me what questions she might be asking that are pertinent? Should she be getting more kinds of test done? I have been reading about the TEE and stress tests etc., So far the echo is the only test she is having to keep watch on this, Any and all input would be greatly appreciated.

Thank you all for your care ind interest in helping and by sharing yourselves. It means so much and has given me much more peace of mind.

I will keep you ALL in my prayers~I felt an immediate connection
with you and that is such a ble and take care.

Bless you all and take care.

bobbie