Upcoming mitral surgery consult

[Marge]

I am new to this forum (and to heart disease!)
I was just recently diagnosed with CHF/DCM. I have systolic dysfunction of the left ventricle, also mitral regurgitation. Both are described as "moderate to severe." My EF is hovering around 30. I have had a cardiac cath which shows absolutely clear arteries. My DCM is "ideopathic" meaning, I guess, they haven't a clue as to the cause. My cardiologist has referred me to a cardiovascular surgeon for a consult next week. Goal is to evaluate whether mitral valve surgery (repair or replacement) is indicated. I have read quite a bit about mitral valves and mitral valve surgery but I'm new to all this. I want the surgery, although I'm scared of it, if it will benefit me. I would like some suggestions as to how to prepare for this consult: what should I expect the CV surgeon to tell me, and what questions should I be prepared to ask him? I'd appreciate any help this group can give me. Marge

 

[Georgia]

Whoa - hi Marge

Whoa - hi Marge

You must be feeling pretty rotten with that EF at 30. Good thing you got diagnosed.

Just about a year ago I was in your situation (didn't know it until January, tho).

Welcome to the site; I know you'll find a wealth of information here; there will be many more along to say howdy. Pull up a chair and a cuppa and plan to spend a lot of time reading old threads. Most of us have been where you are now. It's terrifying, but at least you know there's a reason you feel rotten and the best part is that it's something fixable.

You'll be reading things that'll scare you (most likely); keep going and you'll suddenly realize that you're receiving a great education and preparing yourself for a most important event in your life.

Hang in there with us. We're glad to have you.

 

[Marge]

No, actually ...

No, actually ...

... I don't feel rotten at all! Thanks for the reply, Georgia!
I feel quite well despite the EF. I am not really very symptomatic: SOB only after considerable exertion; no edema; a bit of chest pressure but, again, only after exertion. I went to my primary care physician for something completely different & he thought he detected a murmur & sent me for an EKG and an echo, then on to a cardiologist, who sent me for a cardiac catheritization. I am now on 6.25 mg coreg twice a day and 25 mg cozaar; no other drugs.
At this point, as I said BF, is some pointers on how I should handle the consult with the cardiovascular surgeon who will be evaluating me for mitral valve surgery. (Which I gather from my cardiologist they won't want to do unless there's a fairly clear indication it would benefit the damaged heart muscle.)
I hope this board is a good place to come for this. I have been hanging out on a CHF/cardiomyopathy board for a couple of weeks & they are great but they don't know too much about valves!

 

[Nancy]

Hi Marge-

And welcome to this terrific site. My husband is the patient here and he's had 3 valve surgeries. He also has had 2 lung surgeries, and has a pacemaker, and has CHF, cardiomyopathy, chronic afib, pulmonary hypertension and several other things including a leaking tricuspid, which at this point is something that doesn't require surgery.

You might ask the surgeon what options you have re: the type of valve for your mitral position. I'm quite sure the surgeon will go over your test numbers with you. There are certain parameters which are used to determine whether surgery is a go or not. Even tough you have few symptoms at this point doesn't mean too much. It's nice, of course to not have symptoms, but the heart is tricky and can accommodate some loss of function, and it does that by enlarging, probably the DCM that you are having. Your test numbers must have been severe enough for your cardiologist to send you to the surgeon. My bet is that the surgeon will recommend that surgery be done to prevent any more deterioration of your heart muscle. This could mean a better quality of life for you in the future. Most surgeons would prefer to try to head off permanent heart muscle changes.

By the way, there are several people here who had few or no symptoms prior to surgery. But their tests showed the severity of the problems, so you are not alone.

Also this site has so much information for you to read that it's really phenomenal. On the main page there are many wonderful personal stories that are inspiring, and Hank has included several marvelous heart links. In the pre-surgery sections and post surgery sections there is tremendous information. In the Reference sections there are many wonderful links which can tell you just about everything you ever wanted to know about this kind of surgery.

As Georgia mentioned, it's a little scary to read some of the things, but keep on reading, and you will become more comfortable with it. You have already done your own research and that will help tremendously.

In addition to all of that, asking just about any question will be sure to get several replies. This is a very active site.

Nice to see you here, and hope to see you often.

 

[Marge]

Nancy, thank you very much for replying. It is nice not to have too many symptoms because I don't enjoy feeling rotten, but from my doctors I know symptoms are not always indicative of the degree of damage. The heart heart has a terrific ability to compensate, which unfortunately then leads to MORE damage as the poor old thing tries to pump harder & harder).
I am really hoping that they do decide mitral valve surgery is indicated, because that means they can do SOMETHING. After the cardiac catheterization, the cardiologist said, You have pristine arteries! I said, Gee, it is nice to know that I have beautiful arteries, but at least they can DO stuff for people with blocked arteries--what can you do for me??? Maybe the answer is, Fix that leaky valve!
BTW, I just called my cardiologist's office to find out the numbers on my regurgitation. They say "3 out of 4." I guess that's BAD!

 

[Nancy]

Of course they can do something for you, Marge. If they can fix up my husband's seriously damaged heart (rheumatic fever), they can fix you up. And my husband's not the only one here who has severe problems. We have all kinds of heart problems here and some very unusual heart conditions too. Skilled hands can do wonders. And there are also many, many sophisticated medications to help any lingering problems after surgery.

Read some of the Personal Stories on the main page.

Take care,

 

[Vicki448]

Marge, your situation sounds a lot like mine. In for a sinus infection and found out I had a heart murmur. Nine months later I'm having a mitral valve repaired....no symptoms at all; I didn't feel bad, had plenty of energy, no swelling. Hearing the I had a heart problem blew me away. But it was decided to fix the problem while I was healthy and before the heart became too damaged. Surgery was a breeze, recuperation time was strained due to having severe menopausal symptoms at the same time as trying to recover from surgery. Now, over 16 months later, I'm as good as new. Trust in your doctors and listen to what they say. You are wise to have researched the situation. I knew nothing - just did what I was told and then found out about it all later - after the fact. This website was my main lifeline for a long time. So many people here can help you - we have been throuogh what you are about to face. Come and post often. You will feel so much better....about everything. Best of luck to you.