Possible valve replacement

[scared newbie]

Hi All,

I've been pouring through this site for weeks now and finally decided to register. I'm a 36 year old female diagnosed with MVP when I was 10. No real issues until the past few years. My cardiologist mentioned about a year ago that I would need my valve repair/ replaced in the future and of course I thought very distant future. Well it seems she feels the time has come.

I almost fainted about a month ago just standing talking to a friend so I made an appointment with her, an echo was done and she said my MR has worsened and wanted to do another TEE to clarify the integrity of the leaflets. I also have palpitations every day and have shortness of breath which seems to have gotten worse.

My results:
Left atrial diameter: 4.2
LV sys dim: 3.6
LV Dia dim: 5.7
Posterier wall thickness: 1.0
Septal thickness: 1.0
Ejection Fraction: 55
LA, LV: dilated mild
MV Regurgitation: moderate-severe
MV Valve thickening: mild
MV Prolapse: mild bileaflet mitral valve prolapse with 2 distinct regurgitant jets

Not sure what I'm looking for here, Im just getting extremely anxious about this appointment and any input is greatly appreciated. Once you're referred to a surgeon is it a definite that you'll have surgery? This waiting and wondering is consuming me. Thanks for listening!

 

[cmdm]

Hi Scared Newbie,
My situations sounds very familiar to yours. At 45 now I have known half my life of having Mitral Valve stenosis and until recently my cardiologist insisted I consult with a local surgeon. I will see my local surgeon tomorrow to follow up with my pre-op tests and I have a second opinion scheduled with a surgeon at the U of Penn the day before Thanksgiving. You, however seem to have all of the specifics about your current condition; something I need to educate myself to as far as knowing my own cardiac specifics. I am also scared, I am a married mother of 3, it is impossible to think you will have to put your life on hold. We are both fortunate to have the ability to get good medical care. Just ask a lot of questions and keep visiting this site, there are many experienced friends here. I will keep looking for your posts to see how things are going for you. All the best to you!

With a grateful heart,
Dominique

 

[scared newbie]

Thanks for the reply Dominique! I make it a point to ask for my test results - I am a chronic "googler" and read up on anything and everything I can Although sometimes that gives me greater anxiety. This site is so informative and also reassuring that so many people go through this same thing and are doing great. So you have had pre-op tests, are you scheduled for surgery?

 

[pellicle]

Hi and "welcome"

I am a chronic "googler" and read up on anything and everything I can

That's excellent and I encourage it. But remember that there is
* data
* information
* knowledge
* wisdom

the last two can't be googled.

Your name implies you're new to this valve stuff, so I'm sure you're still in a phase of processing how you feel and learning.

My first advice is "do not panic"

While this is all shockingly new to you (literally) there are millions of us around the world and this has been an intensive area of study / research and development for decades.

Here you will get many answers to your questions (often different) and the important common factor is we're all alive answering your questions about what happened to us.

Although sometimes that gives me greater anxiety.

This quote is from literature (rather than something more significant such as from "the bible"), it comes from a philosophical novel which I have found has helped me on my path through life.

I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain

You'll be fine

Best wishes

 

[Midpack]

Hi!

I have a similar condition, so i am somewhat familiar with the numbers you have posted.

According to what i know, and allways keep in mind that i am just a patient myself, there are just 2 aspects that may indicate that surgery is needed:
1- Your EF. For mitral valve regurgitation disease, doctors want the ejection fraction to be above 60%. 55% is not that far from that, but it is lower than the accepted criteria, so it should be taken into account. However, EF is also very variable (even beat to beat!) and complex to measure accurately, so may be it can be rechecked.
2- You are referring symptoms. However, keep in mind that mild symptoms can allways be a consequence of anxiety and not coming from cardiac conditions.

My advice is not to overthink about it. A good cardiologist will know when surgery is needed. And, if you need it, a good surgeon will successfully repair your mitral valve. Even with bileaflet prolapse, there are high chances to have it repaired (instead of replaced).

You will be fine.

 

[AZ Don]

Not sure what I'm looking for here, Im just getting extremely anxious about this appointment and any input is greatly appreciated. Once you're referred to a surgeon is it a definite that you'll have surgery? This waiting and wondering is consuming me. Thanks for listening!

While a referral to a surgeon does not guarantee imminent surgery, the referral combined with the fact that you now appear to be having symptoms suggests it is likely. That really is a good thing because your problem can be fixed. The waiting really is the worst part.

 

[scared newbie]

Thank you Pellicle and Midpack for the advice and words of encouragement!

My cardiologist suggested that maybe the surgeon would repeat the TEE. I also had one in July and my EF was 64. Is it normal for it to vary that much?

I feel very lucky to have a cardiologist that I trust and have a good relationship with!

 

[Heart Of The Sunrise]

Hi Dominique: U of P is awesome! Who is your surgeon at Penn? If it is Joseph Bavaria...go with him he is the best!

 

[knotguilty]

Hi scared newbie, I can understand being scared. The news of possible OHS is very stressing. Find out all the information you need and write down your questions and get them answered by the cardiologist and surgeon. If you do have to have anything done, you will be good as new. I always feel for people in your situation. Everyone here has been through it and you are very lucky to find this web site before you have to go through anything. I would have appreciated someone to talk to before my surgery. You will find this web site and the people here very helpful.

 

[neil]

agree with knotty on this one, its a rough time at the moment but stay strong, any questions ask the cardio and surgeon they are the experts,

 

[dg_moore]

Others have said it better, but let me chime in also. The thought of open heart surgery is pretty scary, but in fact it's very common and has a very high probability of success. This is a once in a lifetime experience for most of us, but remember it's just another day at the office for the surgical team. Most have done zillions of procedures and are very good at them - you'll be in good hands.

 

[scared newbie]

Thank you all for the kind words. I see Dr. Gus Vlahakes at MGH on Friday and I have a list of questions for him so hopefully once those are answered I'll be able to relax a bit! From what I hear he is a wonderful surgeon

 

[Superbob]

We were all scared newbies once, Scared Newbie.:smile2:

I was diagnosed with a congenitally defective aortic valve when I was in my 20s but my time for surgery didn't come 'til I was 63. By then, I also had a greatly enlarged aortic root, which also had to be replaced. Guess I was "lucky" to be able to wait so long -- on the other hand, maybe the root would not have enlarged so much had there not been so much leakage over the years.

You are blessed to have cardiologists and now a surgeon on top of all this. You need to have it done when you need to have it done, and it will go well and you will have a great life afterwards. I have enjoyed almost nine years post-op now with grandkids born and now doing great with athletics and academics. And I'm visiting heart patients in hospitals as a Mended Hearts volunteer.

Keep us posted. It is only natural to be "scared." We all were. But the success rate is very, very high and life is good afterwards.

All best to you!

 

[labmom53]

ooohhhhh, pellicle - i love the quote from dune, thanks for posting it. will try to keep it in mind for my own upcoming surgery.

 

[Gail in Ca]

I've been thru 3 surgeries and actually felt so good after recovering from my last one where my mitral was finally addressed.
It seemed for me that the mod to severely leaking mitral was causing symptoms that kept me from feeling normal.
Now that it's repaired, I feel so good when I walk the dog or do my other exercising.
I waited many years to have my mitral fixed, now I wonder why the docs make us wait so long? For me, it had to worsen to severe leakage before it was finally repaired.

 

[scared newbie]

Thank you SuperBob and Gail for the responses and I'm so glad I found this forum with all of you wonderful people! I didn't really have any symptoms until the last few months which prompted me to make an appointment with my cardiologist outside of my normally scheduled six month echos. This may sound strange, but I'm almost hoping for surgery because I'm not sure what I'll do If the surgeon says to wait for another few years. Tired of being tired and out of breath!

 

[Heart Of The Sunrise]

We all were scared newbies in the beginning......then we become strong veteran survivors and help the other scared newbies.