St. Jude Valve is leaking

[curse]

My dad got a St Jude valve many years ago. He recently had an EEG just to see how it's doing & his family DR. informed us that he has a leak in the valve. He recomended some " vitamin" that insurance won't pay, but said this " vitamin" will heal the valve. He learned this by reading the file he got from Dads heart DR. We were not informed of this from his heart DR. It must have been about a month ago the EEG was taken.
Dad had a hemmorhage bleed over a year ago because of his coumadin not being checked by his ex heart DR.
He is being kept on a very low dose of coumadin in hopes that this will not happen again. He now is checked weekly or every other to keep his level @ 2.0.
Dad has diabetes, congestive heart failure & has not yet fully recovered from the 2 surgeries. He will be 70 this year.
My question is, will this " vitamine" repair the leak, or is it time for the valve to be repaired? I don't understand why his heart DR. never informed us if this needs to be taken care of soon.
Thanks.

 

[Ross]

Hi curse and welcome to VR

To me, it sounds as though he should be seeking another Doctor as soon as possible. Of course with his other medical problems, managing the coumadin can be difficult but not impossible. Do you have a name for this "Vitamin"? To me, this doesn't sound right at all, but I could be wrong. New strides are being found all the time. I've never heard of such a thing myself, but lets see if anyone else has.

 

[curse]

Hi Ross-

I'm on vacation now & you can see where my concerns are.
I can't recall off hand the name of this "vitamin", but I will be calling Dads DR next week & find out.
When Dad had the bleed & almost died @ that time his Dr's didn't think he would survive anymore surgeries, but to my knowledge they were not aware of the leaky valve. They were more concerned w/ getting him through the surgeries, so the valve was not a priority @ that time.
Dad has all the signs I have read in other forums of a leaky valve & I wonder how long these leaks will go on before they really cause a major problem.

 

[Nancy]

Hi curse and Welcome-

Your poor dad has quite a situation. You will really need to have him evaluated by an excellent cardiologist. You might have to ask around to find the very best one for your dad.

I haven't heard of any vitamins that can heal a leaky valve. Did your dad have an EEG to diagnose his heart problems?? That is a test for brain function and cannot diagnose heart problems. Your dad will probably need to have an echocardiogram or TEE (transesophogeal echocardiogram) to give the cardiologist a good look at his valves. These tests can give measurements of the valve functions and can tell the cardiologist if another surgery is necessary.

It also sounds as if your dad's Coumadin is in a low range. Usually people with mechanical heart valves need to be at a higher range, 2.5-3.5. Blood clotting can be a problem with a Coumadin level that is too low. Please also post your questions on the Coumadin forum. We have a wonderful member here who monitors a Coumadin clinic and is also an expert on Coumadin. His name is Al Lodwick. If he sees your question and the story about your dad, he might have some comments.

I urge you to get a second opinion from a competent cardiologist and to do this ASAP.

Best wishes.

 

[Guest]

If there was any pill, vitamin or anything else, that could repair a leaky valve, I'd own stock in the company, which I do not.

This is the second time today I have run across a problem where someone with a valve could not take warfarin or enough of it to do them any good.

You have the classic damned if you do and damned if you don't problem.

In what area of the country does your dad live? I think that he needs the best of the best to give him an opinion.

 

[LUVMyBirman]

If the leak is trivial scar tissue may grow to cover it. This has happened in my case. Small peri-valvular leak was detected a few short months after surgery. Just past the four year mark and doing well.

There are prescription Rx's to hold off the inevitable....but a vitamin?

I wish your father the best. How long has it been since his surgery? Keep us posted.

 

[Les]

Hi,
Al is so right.....if there was a "magic bullet" to stop valve leakage, I wouldn't have had my second surgery to replace the first leaking St. Jude. ( It was pulling loose around the suture ring) Also, this second one is now leaking and I have heard nothing about a vitamin or any other "cure" for stopping it. Only close monitoring with echo and TEE, as Nancy stated. Another surgery is in my future....but for now, I'm living life to the fullest, remaining active as can be and laughing with the best of 'em! I wish there was something to at least keep this leak in check...I'd be first in line! Best wishes for your dad and keep us posted.
_________________
Les AVR '93 / '95

 

[McCln]

I have had people offer me herbs, diets, and pills after my surgery to cure my murmur. The surgery did that for the time being, I know the leak will come back someday. I agree with all that if there was a magic pill or drink, we would take it. I agree also to have your dad taken to a cardiologist for evaluation. A PCP cannot be giving a heat patient just any pill and say it will cure you. My cardio thinks that my dieting and losing weight will cure my diabetes. I know it won't. So get your dad to a cardiologist and let us know how things go. Take care.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[curse]

Thank you all for your kind words & info.
Dad had his St. Jude in 95' I believe. It was his cardiologist who ran the EEG looking to check on his St. Jude, but we were informed of the leak during an appt. w/ his family DR. when we asked how the EEG had gone.
This "vitamin" I do recall is a prescription his family DR. informed us of.
I realize that his coumadin is being left very low. Dad's cardiologist wants it left there in fear of another hemmorhage.
Hopefully, next week we'll get some better info. from his DR. & go from their.

 

[LUVMyBirman]

Les?

Les?

Your leaking again? I am very sorry. Assuming it's trivial? Same location?

Take care

 

[ALCapshaw2]

What are the signs of a leaking Aortic Valve (Mechanical that is)?

What parameters will change on the Echo Report when a leak occurs?

'AL'

 

[Granbonny]

I want to know, too, Al

I want to know, too, Al

I asked for an echo at my first 6 month checkup..before seeing card. He said it was normal..Asked my PCP later and he said it was as normal as could be...Didn't ask for one at 1 year checkup..but now I am due another Card appointment in Sept. I think I will call a month ahead and ask for another one.. At age 63, I want to spend my $900,000 left. I have a mech. valve and shouldn't have to have it replaced I can have a lot of echo's and buy a lot of coumadin for that money. Better safe than sorry. Let us know how your Dad is, Curse. Bonnie

 

[curse]

RX?

RX?

Hi Gina-

I have searched but can't find that prescription anywhere on the net. Can you help me out? Dads family Dr. was having a "rough" Monday when we saw him, so that may be why it came out as a "vitamin". That was only his family Dr. & he's in a teaching hospital, so he's young. )
I intend to call him tomorrow & would like to sound a bit more intelligent than he had.
Thanks!

 

[LUVMyBirman]

Hi Curse,

I am not certain of the medications. I do know they are out there as my doctor stated they could prescribe them to hold sugrery off awhile. Great person to contact in the group here is Francesca. "FDegrandville".Do a search under members and send her a private message. Or post a new thread directed towards her. May get attention sooner.

All the best to your father. Please keep us posted.

 

[curse]

Thanks Gina

Thanks Gina

Thanks Gina for that assistance. I'll be sure to let you know how my conversation goes w/ the Dr. Hopefully, things will be a bit clearer. I know Dad will feel better & that's all that matters.

Curse

 

[Nancy]

Here's a link that gives very detailed information on valve stenosis and regurgitation and the way to evaluate for surgical intervention. It talks about the specific measurements, and much more.

http://www.valvereplacement.com/forums/showthread.php?s=&threadid=3748