Information needed...

[hanali]

Hello everyone.
I first joined this group in October of 2001, when I was looking for information prior to my AVR surgery. I got more than I ever thought I would. You were a true support group for me, and I thank all of the people that offered me encouragement and information during that scary time of my life.
I've been selfish, in that I've been enjoying being healthy and feeling good again, and I haven't contributed any moral support to other members, especially the new ones.
I rejoined earlier this year and am so impressed with the changes! And, now I find myself in need of a little information, so I?m turning to you again.
I?ve recently (last September) remarried, retired from my job of 27 years and moved to another state. Talk about changes! I feel like I have a whole new identity!
It?s all wonderful, except for the fact that I had to leave all of my doctors behind. My cardiologist where I lived before referred me to one here, and I have had an appt. with him back when I first relocated, just an introductory meeting. I was not real comfortable with him, but I?m probably not giving him enough of a chance, as I really liked my first one. He looked at all of my records and my most recent Echocardiogram (which had just been done in August). He recommended that I come back to see him in two years. My first cardiologist had said that he wanted to do an Echo on me every year.
Let me state at this point that I?m almost 61 years old. I opted for a tissue valve, because I didn?t want to be bothered with all of the complications associated with taking Cumadin. I realize that I?ll probably (hopefully) live long enough to have to have it done again in 15 or so years. My surgeon agreed with my choice wholeheartedly. He put in a stintless porcine valve.
To make a long story even longer, I?ve found an internist (who?s done a little bit of everything and a lot of some others) here for other problems that I have. He recommended that I have an Echocardiogram, which I did this morning.
The technician that did the test shared information with me that perhaps she shouldn?t have, but I?m the sort of person that wants to know all the details anyway. Actually, she was training a student technician and talked a lot about what she saw. I just happened to be there?so I heard it too!
She mentioned that she saw some calcification on my mitral valve, and a small amount of regurgitation around the aortic valve.
I?ve had mitral valve prolapse for at least 30 years, but this is the first time anyone has said that there?s some calcification there. The problem with my aortic valve before my surgery was stenosis, caused by calcification.
Now (finally) ?my questions:
1. What are the odds of my mitral valve needing to be replaced, either when I have the aortic redone or sooner? Does calcification usually progress at the same rate no matter which valve is affected? My aortic went from 1.35 to .5 CMs in less than 2 years.
2. Is once every 2 years often enough to have an Echo done?
3. Is the slight regurgitation with my aortic something to be concerned about? As in?will it get worse? Or is that one of those crystal ball questions?
If anyone has any experience with any of this, I?d appreciate hearing from you. I know that the cardiologist at the hospital where I had the Echo done will go over all of this with me in a few days, but I?d like some information meanwhile.
Thanks in advance?hanali

 

[brendamarlene]

First, I see you are in Alabama, where I had to travel to in order to have my surgery. So I think you are very lucky to be close to UAB. If I were you, I would go there for an evaluation.

I would always get a second opinion as I had one cardiologist tell me I needed resurgery right away (and that was 3 years ago), but Dr. Pacifico, after reviewing my films then, did not think it necessary yet.

Now, however, he tells me I will need the resurgery in 6 months to a year. This time I will probably get a mechanical (I am now 57 years old).

I also wonder how quickly my stenosis will deteriorate. It is now at 1.00. I am pretty asymptomatic, although I do get more tired (but I am also getting older!)

I think I will return to my original surgeon for the resurgery although I am tempted by Cleveland Clinic, since they are rated #1

 

[ALCapshaw2]

Welcome Back Hanali!

If I were in your shoes, I would TELL my Cardiologist I wanted an Echo at least annually, and more frequently if there are any notable changes going on. Do you have copies of all of your Echo Test Reports? If not, it would be beneficial to request copies and learn the meanings of each measurement. There is a website that explains all this which I 'believe' is in the REFERENCE Forum Section. It has been posted several times in answer to questions such as yours.

You need to understand the medical hierarchy of severity.

NO / NONE
TRACE
SLIGHT
MODERATE
SEVERE
CRITICAL

SLIGHT means that they should start monitoring your condition, usually annually. Somewhere between Moderate and Severe, they will probably switch to semi-annual checkups.

Your question about Mitral Stenosis is a GOOD ONE, probably best addressed by your cardiologist. Where are you in ALA? I'm near Huntsville. Send me a Private Message and we can discuss more.

'AL'

 

[hanali]

To Brendamarlene

To Brendamarlene

Thanks for replying to my post. Don't make the same mistake that I did before my surgery and blame symptoms on "getting older". Dizziness, tiredness, shortness of breath are not normal aging byproducts!
I had had symptoms for at least 5 years before my diagnosis of aortic stenosis, but blamed them on "getting older". If your valve opening is only 1cm...then you need to be having it regularly checked...which I assume you're doing.
Thanks for the info on UAB. Being a newcomer to the state, I had no idea that there was such a good facility nearby.
I'll either opt to go back to Jackson MS where I had my first surgery, or check out UAB.
Thanks again...and take care.
hanali

 

[bvdr]

Hi Hanali,

As I pondered on your post I kept coming back to the question of what was the root cause of your valve problems to begin with? Keep in mind that almost all adult mitral stenosis has it's roots in rheumatic heart disease. There are several of us here that were never aware of having had rheumatic fever until valve disease showed up later in life.

Last August I had a MVR for a "stenotic, fibrotic, and rheumatic" mitral valve. I had some problems with my other valves too but not enough to replace them. One problem that I did not really have before my MVR was AS. Now however I do have mild/moderate AS (1.4 cm last March). So you are wondering now about your mitral valve just like I am my aortic valve.

.....and it still comes back to the question of what is the root cause?

Let us know what you find out, OK? I'm really interested and I too think you need an echo at least once a year and more often if symptoms appear or increase.

 

[Nancy]

Hi Hanali-

Welcome back. For me, the overwhelming thing is that your cardiologist wants to do an echo every two years. For that reason alone I'd be seeking another cardiologist. You have a tissue valve, and now there are some things showing up that weren't there before. You need an echo at least every year. And probably a check-up every 6 months or sooner.

There is no way to predict how fast a valve can deteriorate. Many on the site have been very surprised. So that's the reason I'm saying the above.

 

[tobagotwo]

I'll hazard some replies, although I am not a doctor, nor a medical professional:

What are the odds of my mitral valve needing to be replaced, either when I have the aortic redone or sooner?

If the calcification is just starting, you may need the mitral replaced by the time you replace your Aortic again. If it has progressed, it may come sooner. The amount of progression is something the echo tech can estimate for you. The cardiologist may not have specific information about that on the report form s/he receives.

Calcification usually does progress, once it starts, although it can take many years getting around to it. I will likely have to have my mitral replaced with my second aortic for the same reason, if my mitral doesn't seize up too fast to wait.


Does calcification usually progress at the same rate no matter which valve is affected? My aortic went from 1.35 to .5 CMs in less than 2 years.

With valve calcification, the worse it gets, the faster it gets worse, so the last year or so it really seems to go down the hopper in a hurry. That is not representative of the initial rate of stenosis, which progresses much more slowly with a larger opening.

Also, the mitral valve is shaped differently than the aortic valve, and has different dynamics. It appears to generally take longer to calcify to such a sorry state.


Is once every 2 years often enough to have an Echo done?

Not in my book. It is normal practice after an AVR or MVR to have annual echoes. It does likely mean that your cardiologist feels your valve is doing just fine.


Is the slight regurgitation with my aortic something to be concerned about? As in?will it get worse? Or is that one of those crystal ball questions?

It depends what is causing the regurgitation. If it is being caused by calcification, it will likely worsen.

However, most replacement valves do regurgitate slightly right from the beginning, and are still considered to be well in the normal range. These usually neither worsen nor cause problems throughout their usable life. It has to be mentioned in the echo report, but may not have any health significance whatsoever.

Best wishes,

 

[hanali]

Great information

Great information

Thanks to Betty, Nancy and Bob for your responses. You've given me a lot of information...some of it I have never heard before.
Betty...my doctors have all said that I must have had rheumatic fever as a child, but I wasn't aware of it. I had never heard mention of it in the family. But I do remember having a severe strep throat when I was maybe 4 or 5 years old. I think that's what caused the valve damage...
I'll certainly keep you informed.
And Bob...it looks like you and I are in similar boats! Good luck with yours...and thanks again for your insightful information...You say you're not a medical professional, but you sure do know your stuff!
Thanks again to you all.
hanali

 

[ALCapshaw2]

Hanali,

It sounds like you have a good PCP which is very important for Heart Patients. The fact that he is an interint is even better.

Next time you see him, why not ask him who he would recommend for a Cardiologist in your home town, in Montgomery, and even in Birmingham. You could gently include what you did not like about the one you saw.

The Kirklin Clinic at UAB was set up to bring together top notch physicians in every discipline in one building. That would be a good place to get an overall workup for whatever ails you.

The degree of recovery depends on how much damage has been done to your heart muscles and walls. That's why I have come to be a proponent of Early Intervention. If Heart Enlargement or Wall Thickening goes on too long, permanent damage can be done that will limit your recovery. Cardiologists and Surgeons often disagree about the best time for replacement. I side with the surgeons on wanting to get in there before permanent damage sets in. A TEE (TransEsophageal Echo) where they place an ultrasonic transducer down your throat directly next to your heart can give much better images than the standard 'through the chest' echo. That might be something to discuss when you find a new cardiologist.

'AL'

 

[hanali]

For Al

For Al

Thanks again Al...I appreciate all of your messages...I've got a lot better handle on what I need to do now.
I'm glad that I'm not the only one that feels like yearly echos are the way to go. I like to keep a close tab on what's going on. Two years is a mighty long time!
Take care...hanali