Discouraged About Echocardiogram

[Katlee]

I've been reading posts where people are told they need repair/replace
ment and they're asymptomatic. At 53, I don't think I'm too old for a
repair/replacement, but the problem is, my card never broaches the
subject. All he was concerned about ,was why I cancelled the nuclear stress
test. I told him I was worried about the effects of the radioactive tracer
on my kidney function and I 've had some problems as far as glomerular
filtration rate. He said the Technetium (sp) wouldn't affect the kidneys,
but I beg to differ with him.

Now I'll get to the point about the "echo"; It showed that I still have
preserved LVF, however, the mitral valve which is prolapsed has mild
to moderate regurgitation and the tricuspid has moderate regurgitation.
From journal articles I've read, its far better to do a repair/replacement
before the left ventricle becomes compromised. I'm beginning to think
I should start looking for another card. Someone, please give me some
encouragement, because my quality of life is not good at all.

 

[Phyllis]

Katlee, I think you already know the answer. It sounds like another opinion is worth pursuing!

 

[ALCapshaw2]

A second opinion is DEFINITELY called for here.

You would be wise to find a Cardiologist (and Surgeon) with considerable experience dealing with Connective Tissue Disorders. Do a SEARCH on VR.com for ACHD to find other posts dealing with Adult Congenital Heart Disease.

You will also want to discuss the risks of nuclear testing because most surgeons will want to see the results of a Heart Catheterization (i.e. Angiogram) before doing surgery.

If it's any help, I've lost count of the number of Nuclear Stress Tests and Heart Cath's I've had and I'm still here, with NO known kidney problems.

Radiation to the Chest for Hodgkin's Disease or other Cancerious conditions is another matter. Several of our members have had to have Valve Repalcement Surgery because of long term effects of Radiation Therapy to the Chest.

'AL Capshaw'

 

[Nan]

HI! Well, first of all, you certainly are not too old for heart surgery! They seem to be doing heart surgery for folks now in their 80's and 90's, so you are just a baby!

And secondly, it certainly sounds like you would benefit from another opinion.

I gather you are symptomatic? That is certainly something that the docs should be taking into consideration.

Let us know how you make out.

 

[Marguerite53]

I think you should definitely get another opinion. You are fairly close to some major heart hospitals, aren't you? I would definitely choose a cardio or surgeon who is connected to a heart center which specializes or has oodles of experience with connective tissue disorder. That is the piece of the puzzle that needs special attention, I would think.

Get on it!! Your feelings need to be respected to the highest degree. Don't let your doctor intimidate you. You know yourself better...find someone who will respect your concerns.

Keep us posted.

Marguerite

 

[Katlee]

A Big Thankyou

A Big Thankyou

Hi To Everyone,

A big thank you to Phyllis, Al, Nan and Marguerite for taking the time
to answer my post. I will get a second opinion and yes, Nan, I am
symptomatic. I will get a nuclear stress test, because I'd need one
anyway to show fitness for surgery. Thanks again everybody and
I'll keep you posted.

 

[tobagotwo]

I am not a fan of stress tests in general. I don't believe the results are typical of any situation a person normally encounters. I think they have a wide margin for error.

I also believe that in cases of compromised valves, the results are often misleading. I can see they are of value when there are multiple or unusual heart issues, and they need to determine the general condition and viability of the heart.

However, as far as the rest - bunk. President Clinton had the best at Columbia do it for him. "You're fine," they said. Three weeks later he had emergency bypass surgery for CAD.

Okay, off my soapbox...

53 is a good age to have this done. Mine was done at 52. I recovered obnoxiously quickly.

I agree it's time for another opinion. You don't mention whether your left ventricle is hypertrophic (enlarged), or whether your atria have enlarged. I suspect they may have. Mild-to-moderate regurgitation is usually handleable for the mitral valve alone, but when it occurs in conjunction with moderate leakage from the tricuspid, its effects are magnified.

You may not be ready for surgery just yet, but you're on the warning path, especially with your symptoms. And decisions still need to be made about what will get repaired or replaced in the surgery. Has there been discussion about whether they would do both valves, or just the mitral? If it were me, I'd want them both fixed at once. What's your backup replacement valve, if repair turns out not to be an option?

You want a chance to think about these things, and some input from the cardiologists or surgeon about them.

Best wishes,

 

[Katlee]

Hi Bob,
Actually, "noone" has ever broached the subject about repair/replacement
of either valve. I've been on social security disability for close to 8 yrs
now, and I'm beginning to think nothing can be done, surgically that is, or
someone would have broached the subject by now. Throw a congenital
heart defect into the mix and a MI from "96" and thats the scenario.

 

[Ross]

As far as the nuclear stress test, I'm proud that you turned that down! I'll never have another one and I'm not the only one here that will tell you that. I agree with tobagotwo on the results of those also. I risked my life to prove nothing that couldn't be proved in other tests.

As for surgery, I'd get a second opinion without doubt however, they'll likely not do a thing until one of the valves hits severe 4+ regurgitation. Your certainly working your way there now, which is why we say get a second opinion. Just because your on Medicare doesn't mean they went fix you. They've done me twice now.

 

[tobagotwo]

Okay. There are some complicating factors involved. And you do have RVH and LVH listed under your signature, as well as ASD. Was the ASD repaired?

This is exactly why you need a second opinion. If he doesn't think they should do anything surgically about it, you deserve to know what his reasoning is. He may have been reluctant to talk about it for concern of upsetting you. And you do deserve to know if other professionals might think differently about your case. It doesn't mean you have to give up your current cardiologist, if you like him in other ways. If you get a second opinion, though, I would suggest that you get it from someone outside of his group.

You can be involved in determining the balance of the risks vs. your quality of life, and life expectancy without surgery. The only thing I caution you is that if you do this, you must be ready to hear the answers, whatever they may turn out to be. Being part of the decisions means that you need to have a real understanding of the ramifications and possible outcomes of the choices.

A repair is less likely to last with overt connective tissue problems, especially when the surrounding heart tissue may also have been compromised by rheumatic fever and/or an MI. If they did surgery, they would probably replace one or both valves with carbon (mechanical) valves. The biggest concern would be the strength and quality of the tissue they would have to stich into. If there is surgery, they might include a MAZE procedure to try to do something about your atrial fibrillation.

If you decide to pursue this, the entire discussion may well be unnerving for you, as it's you they'll be talking about. Stay calm and involved in the discussion, take notes if you need to, and promise yourself a big drink or a special treat when you get home.

Best wishes,

 

[Katlee]

No, the ASD remains uncorrected. In fact, the Cards vacillated where
thats concerned so much, I didn't know whether I was coming or going.
I did some research or my own and learned that cards don't like to miss
the call where they're concerned because of the legal pitfalls, if you
know where I'm coming from.

My previous card (who's now deceased) was aware that I had some
issues with depression, which later became dx as manic-depression,
so I'm hoping that doesn't play into this. I think I can handle it, but
I don't know if they feel that way.

 

[pipersmith]

You must must must get at least another opinion - or four!!!

You must must must get at least another opinion - or four!!!

If you feel - in the least - that your cardio is not on the same page - or even if he is - seek other alternatives. Just for your own peace of mind you should have another perspective on the issue, or even a couple. I think that the dics can get so used to the "normal" cases in their day to day practice, that they often fail to judge each case individually - this can be a dangerous thing. They make assumptions, don't really listen - consider your quality of life - they think they know - it is what the guidelines specify, it is typical of valve failure, etc. Health is an individual thing. Your heart is telling you to find more answers - find them!!!

 

[Barbara Stewart]

Katlee,
Do I detect a bit of depression in your post? If you, at 52 are too old for OHS, then I must be really too old. I'm turning 57 on Friday and in the last 2.5 years I've had two OHS and recently, a pace maker. That last one has been a real shocker, but I'm still hoping to finally feel better for an extended period. My $.02 is that you need to become assertive and not be intimidated by the docs. If I had been a bit more assertive before my first surgery, I might not have had to go through the nightmare I did. In my book, if it's going to have to be done "sooner or later" make it sooner. I dont' know anything about Medicare, yet, but is sounds like Ross can help you in that area. Ross knows things I didn't know needed knowing.
Katlee, if you have a doc who manages your bipolar condition, go talk to him or her. He probably won't know a thing about your heart, but he can help you cope with it and help you see that there is a future out there for you. It's WAY too early to give up. Stop feeling sorry for yourself and get mad. Anger makes you feel powerful and you need to. It's your life and you are the captain. Figure out where you want to go and find the folks to help you. Sorry for the lecture, but I understand a lot about depression and feeling hopeless and I know it's a killer.
Get going girl. There is a wealth of information on this site and a whole lot of people who care. Barbara

 

[Katlee]

Thank you Barbara, I needed that; if my father were here now( he died
from a massive coronary 18 yrs ago) he'd be spitting nails as far as the
Drs playing ping pong with dx(congenital defect)