mitral valve leakage

[Raj]

Hi,

I've just found out that I have a leaking mitral valve. I am male and 33 years old.

The doctor says I will have to have a replacement valve sometime during my lifetime but cannot say when exactly. Could be next year or in 30 years time. He says he will monitor me every year.

Please could someone tell me how will I know when I will need the surgery. What symptoms should I be looking out for.

Thanks

Raj

 

[Ross]

Hi Raj and welcome to the forums.

The best indicator for surgery will be the results of check up testing. Once the valve gets to a certain degree of regurgitation, then it will be time to take action. It may be a year, maybe 30, maybe even never.

Symptoms of things getting worse are usually severe shortness of breath with minimal activity, general tiredness, and just plain not feeling like yourself. You also may or may not develop some fluid around the lungs or heart.

I would encourage you to read around in the presurgery forum as well as others and gather as much information as you can possibly stand. We've all been there and done that, so we speak from experience.

Again, welcome to the forums and we look forward to your questions.

 

[Yokena]

Symptoms of valve leakage

Symptoms of valve leakage

Hi Raj, and welcome. Sorry to hear you're facing valve repacement surgery one of these days, but at least it is something that is "fixable".

I didn't know what was going in when my tricuspid valve was giving out, but thought that I was just middle-aged, overweight, and out of shape. I didn't have much energy, the heat made me sick, I was short of breath all the time, and I got tired very easily. All that turned around when the valve was replaced. The doctor tells me to expect the same symptoms when my bicuspid aortic valve needs replacing, so I gather these are the standard syptoms of a bad valve.

Good luck!

Joyce in Mississippi

 

[fyrfytr]

Hi Raj,
Welcome to this Great Site!

Like Ross said: The best indicator for surgery will be the results of the checkup testing.

When I began to notice that I was slowing down and could not keep up the young guys at the dept. anymore, I would always just say that I was getting older. But deep down I had a feeling that my aortic valve was getting worse. So there are a lot of signs that will let you know what is going on.

What kind of tests have you had done so far?

Again welcome and there are a lot of posts that you can learn from.

Dave
_____________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[Nan]

Hi Raj, and welcome.

I am also waiting for the time when my mitral valve will need to be either repaired or replaced! (I already have a St. Jude's Aortic valve).

The key indicators will certainly be what the other folks have already mentioned, and in addition your cardio should be following you with regular echocardiograms which can let you know the degree of the leak, and whether or not your heart is starting to be affected by the problem valve. That, together with symptoms, will probably be the deciding factor.

The American College of Cardiology (hope this is right) has a web site with recommended practices and it has a whole section on the timing for mitral valve surgery (as well as other valves and heart ailments). Unfortunately I cannot give you the link, don't know how to do that!!

Best wishes to you.

 

[Raj]

Thank you all for your quick replies.

I went to have a medical for life insurance and the doctor noticed a systolic murmur. I was then sent to a specialist who performed an echo cardiogram and this is when he told me I had a leaking valve. The specialist said everything else about my heart was fine. I had a chest x-ray and this was fine too. To see how bad the leakage is and also to determine a baseline for future investigations I underwent a TOE (cannot remember what this stands for). I was told I had moderate damage to my valve and substantial leakage.

I also have high blood pressure and am taking benzofluizide for this. Also, the specialist has put me on perindopril for my heart.

I have viewed topics on this site for a few weeks and have found them very helpful. thanks to you all.

Raj

 

[Nancy]

Hi Raj-

Welcome to the site. I'm sorry that you find yourself in the "waiting room", but you have lots of excellent company.

Here is the link that Nan spoke about. It's pretty technical, so it will give your brain a good workout

http://www.acc.org/clinical/guidelines/failure/hf_index.htm

 

[Ross]

Hopefully you can get the insurance before you have anything done as far as heart surgery. It's difficult to find anyone that will insure you afterwards.

 

[Nan]

Thanks Nancy, I thought that you might come up with the link!! you are so good at keeping tabs on everything! That comes ,of course, from living in the tri -city area!!

 

[Marty]

Long time leaky mitral valve

Long time leaky mitral valve

Raj. I was diagnosed with mitral valve prolapse wth minimal regurg when I was about your age. I didn't get operated till age 72 and today five years later feel fine. My cardiologist says some mitrals go down hill very slowly and I was one of them. You need to get checked at regular intervals and have a good echocardiogram every year. The ejection fraction and the diameters of the left atrium will tell your doctors when the surgery is indicated. Nowadays earlier is better than later. You should probably have surgery before the condition is bad enough to cause significant symptoms.

 

[Aunt Granny]

Hey Raj, I know exactly what you are going through. I remember when I was told for the first time that someday I might need to replace my arotic valve. I thought - "This sounds serious!" I went back in for yearly echos and the second time the doc told me that I may NEVER have to have a replacement. So I thought I was getting all worked up over nothing. Then in May I realized I had been getting out of breath and sweating. Still I just thought it was female stuff. Then I felt a heavyness in my chest so I desided to let the fire dept check me out. They suggested I go to the hospital because my ekg looked funny, so I did. Actully the ekg was normal for me. I was released but told to make an appt with my doc. I did and things ARE getting worse. He says I will need my replacement in about one year. I say all this so that you can see how important your annual check ups are. I know it may seem silly to keep going when nothing appears to be wrong, but it needs to be done as often as they say. This site has helped my tremendously. You have come to the right place for answers and support. I am not a seasoned member, just a rookie, but these people are great. Soooooo I will hold your hand if you will hold mine - okay! God Bless

 

[Nancy]

That's right, Nan- fellow upstater

Or it comes from my husband going through the whole Merck manual of diseases by trying them all out one by one.

If he gets any more conditions, I'll run out of room in my medical "Favorites" folder.

He's just about done everything cardiology-wise and is now working on some different areas.

 

[Karlynn]

Hi Raj and welcome.

I had my mitral valve replaced 12 years ago at age 32. I had lots and lots of symptoms for about 6 years prior and I was told about the leakage 4 years prior to the problems starting. I had no symptoms, just tests to show I had a problem. Pregnancy threw me over the no-symptom cliff.

Everyone is different. You could go on and on and on with no issues. But you are doing such a wise thing in finding out what to look for.

My advice would be to stay physically active, keep in good shape, eat healthy and be good to your body. That way, if and when the time eventually comes for surgery your body will be in the best possible shape for it. Be sure and consult with your doctor if you currently aren't working out or excersising, to get his approval and his guidelines on how you should work out.

I had lots of arrhythmia (irregular heart beats) with my leaky mitral valve. Some people do, some don't. Some people experience chest pain, I didn't. But as others have said, it was the shortness of breath (almost all the time) that was the big clue that surgery was near.

Best wishes,
Karlynn

 

[bvdr]

Hi Raj,

Welcome to this board from another mitral valve person. About a year before I had valve replacement (in retrospect) I began noticing a real decline in my physical abilities. I became very easily winded when racing my then two year old grandson and started going to bed much earlier and not taking on as many projects.

I began also having more frequent bouts of very rapid heartbeats that later was shown to be atrial fib. It was the work-up to diagnose the atrial fib that uncovered the rheumatic heart disease.

The thing that made me really sit up and pay attention was a respiratory infection just after Christmas that made me so very very short of breath that I could not lay down in bed. I got over the infection but I started going downhill from there.

By the time I had surgery in August I was using pillows so I was almost sitting up at night and got out of breath walking across a parking lot. I could sing only a verse or two of a hymn and then would catch my breath for one or two.

After eating, all symptoms would be worse. I had no heat tolerance and was totally exhausted much of the time.

Now? I am six weeks post op and feel much much better!

Most of these symptoms are very common and may be things you notice when and if your valve starts to deteriorate. Do you know why you have mitral regurgitation?

Make yourself at home on this board and feel free to ask whatever as someone here probably has asked the same questions and researched the answer.

Oh, by the way. Make it a habit of getting copies of your tests and labs so you can become a very very informed person on your situation.

 

[Birky]

Symtoms

Symtoms

I also had a mitral valve replacement and Betty's symptoms are the same that I was experiencing. Last fall I had 3 bouts of upper respiratory infections and was having one when I went to see the Cardiologist last December. I think I really started getting worse about 4 years ago but for some reason the Card didn't think it was time even after I was hospitalized for CHF and pnemonia. They then put me on a water pill. I wish I would have done this sooner because I feel so much better. My energy level is great and I just feel better all over. I can deal with the headaches, heartburn and other things from the surgery.
As I said before, everyone knows how they feel so let them Drs. know. Good luck,

 

[Harrybaby666]

In The Same Boat!!

In The Same Boat!!

Hi Raj,

I just wanted to write and let you know that I am only 4 years older than you, and I am in the same boat that you are, and that I am just as scared as you are because I still don't know what to expect. I do however know, that you have stopped at the right place for support and companionship with all the nice people on this website. I have only been on for a couple of months, but It's like I have always been a part of this family. Just knowing this will help you to move through the possible difficult times. If you need anything, you can e mail me at [email protected] or Private Message me if you just wanna blab with someone around your own age. Take care, Harrybaby666

 

[Raj]

Hi,

Thanks again for all your replies.

This years been a bit strange for me. Having been diagnoised with high blood pressure, a leaking mitral valve and also experiencing a "wobbly" feeling, I had to take 5 weeks off work for anxiety/stress reasons (my GP said I have worried too much about my health). After these 5 weeks off the "wobbly" feeling went and I am feeling "normal" again. I think I became ill because I kept my feelings about my health to myself (not wanting to scare my wife) and telling everyone I was coping fine, until one day I started to feeling shaky inside and suddenly felt so upset. I found that after I told my wife/family/friends what I was feeling things got better.

Even better my wife and I are expecting are first baby in December.

By the way I've noticed you mostly are over in the USA/Canada area. I live in London.

Raj

 

[fyrfytr]

Hey Raj,
It does help if a person gets these things out by talking to family, friends or your Dr's.

Congratulations on expecting your first baby. That will be a Joy to both of you. Hope everything goes OK.

We have a member Jan who lives in Liverpool and Billy in Ireland and several others.

Take Care
Dave
___________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical

 

[Harrybaby666]

Raj, I have run into the same thing...

Raj, I have run into the same thing...

Good Morning Raj,

I just had to reply to let you know that I have run into the same thing that yoiu have. Alot of what I have run into is that the doctors feel that because we are at a young age that automatically we are in"perfect health" obviously, this isn't so...I have been sick all my life and for the docs to just find out what is the matter now is extremely rediculous. Also, they figure because they have had the medical training, that you should listen to them instead of your own body...WRONNGG!!! You should listen to them, but also LISTEN TO WHAT YOUR OWN BODY IS SAYING...IF YOU DON'T FEEL RIGHT, PUT YOUR FOOT DOWN. I have recently learned this from all the nice people on this website, and you know, it works... You know your body even more than the doctor, so don't let him blow your problems off.. Take care, Harrybaby666

 

[Karlynn]

Raj,
Stress can really mess with your body in so many different ways. For those of us with not so perfect hearts, we need to find ways to deal with stress because we'll notice it's effect before the normal healthy-hearted person. When I'm stressed, my occasional arrythmia will become more frequent. I become more tired as well. My husband and I just became empty nesters after sending our daughter off to her freshman year in college. We have a son in his 2nd year. I'm coming off of 3 weeks of increased PVC's. I finally realized that it was because I was stressed and somewhat depressed over the changes in my life - no kids at home, new jobs, missing being a full-time mom. Acknowledging the stress and sharing with those close to you helps. This forum is a great place to share. Journaling can too. Find a doctor that understands how stress plays a big part in our health and can help in that area if you need it.

Congratulations on the baby! Speaking of stress! Children are accomplished stress-makers. But also wonderful stress relievers!!!!!!

Karlynn