When Valve Goes bad and Surgery is refused.

[Jkm7]

I am not the best at research and entering the right combination of 'key' words so hopefully someone here can help.

My question is gloomy but happily does not apply to me. It is only a For My Info type thing as I have wondered about this since being diagnosed and it still lingers in my mind desite my surgery being over 3 years ago. It is time for me to get the info and put the question to rest.

If one does not have surgery and their valve becomes ineffective, what is the disease process? What is expected life expectancy and how poor a quality of life.

I see my cardio soon and am thinking of asking him but I'm not sure.
I barely recall there was a member here who refused surgery and ultimately passed away from his deteriorated valve but I can't remember his name so can't find posts his wife made.

Thanks.

[Sorry, I just realized I put this in the wrong forum. I wish I could move it.]

 

[Freddie]

Can't help you on finding this member, but I can tell you what my surgeon said to me when I asked about not having surgery done to my mitral valve and I felt absolutely fine.
His reply was, "you probably have about 2 years before you die and you'd be on many medications".

 

[Mentu]

The prognosis is grim. All of the well known symptoms develop resulting in increasing debility possibly drawn out over several years. Because the stress on the heart continues, the heart becomes further enlarged and weakened. One might die of any of a number of causes. Congestive heart failure would be high on the list as would heart attack, stroke and organ failure. With time, it becomes more likely that the developing stenosis will simply cause the valve to fail resulting in sudden death. Who would choose such a future?

My Grandfather and Uncle died this way; my Grandfather at 48 and my Uncle at 50. Their early deaths left holes in our family that still effect us today decades later. Again, who would choose such a future.

Larry

 

[nngbwh]

Can't help you on finding this member, but I can tell you what my surgeon said to me when I asked about not having surgery done to my mitral valve and I felt absolutely fine.
His reply was, "you probably have about 2 years before you die and you'd be on many medications".

That's what my surgeon told me something bad is going to happen soon to you if you don't get this surgery done right away.

 

[AgilityDog]

What happens? Probate.

Seriously. I blew my mitral valve in late March or early April 2006. Despite being very symptomatic, my internist ignored my concerns, saying I just had left-over bronchitis. By Mid June I coughed so much from CHF I could not sleep. By mid July I had put on over 10 lbs of water from CHF. I was finally seen by a cardio and diagnosed in late August. Surgery Sept 5, 2006. By this time, I could not speak a full sentence without gasping for air, and was constantly coughing like I had pneumonia. If I had not had surgery, I would have died by Xmas. No joke.

 

[Jkm7]

Thank you.

I probably knew the answer but still felt the need to ask.
I do recall my cardio said to me when he told me it was time for surgery that there is a point of no return. I think he (rightly) suspected I would put it off if I thought I could. He made it quite clear I was not to think that way.

 

[catwoman]

I saw a cardio on 4/29/03 and he said I needed surgery ASAP. I replied that I had some projects I needed finishing and needed to wait until my niece was married in October. He told me I didn't have that much time. I didn't ask what would be the disease progression, but each day was more of a struggle to breathe, talk, walk, etc., because I was in CHF.
I got into the OR about 2 months later.
I have seen listings on the local medical examiner's website of people who died from valve failure. I'm not sure if they threw a clot, if they died from CHF, or what. One of these days I will call the ME's office out of curiosity and ask.
Once a reporter, always a nosy person. I have no qualms about asking.

 

[Duffey]

I don't know if the wife is still a member, but the username was 2heartsasone. At least the one I remember. She was on VR back when I joined in 2004, and her husband had just refused a second attempt at VR. After awhile, she quit posting but I think she updated in the last year or so that her husband had died.

 

[Duffey]

I looked through the archives, and here's one thread that deals with the member I mentioned in my previous post. As you can see by the number of replies, it was a hot topic.

http://www.valvereplacement.org/forums/showthread.php?7026-End-Of-My-Rope&

 

[Jkm7]

Duffy,

Thank you so much for finding that thread. That is, indeed, the one I remembered.
Very sad.
I'm very appreciative you went to the trouble.

 

[Duffey]

Not a problem; the thread was a hard one to forget.

 

[Lynlw]

There also is a post in the memorial forum. http://www.valvereplacement.org/for...Stone-Butts-(2hartsas1)-11-14-1944-04-13-2009 I don't know if this link will work since I believe its set to provate, if not his name is Victor and he passed in 09 if you want to look for it.

 

[Jkm7]

Thanks, Lyn.

 

[Eva]

When my ex-cardio dumped on me the news in March 2008 that I needed surgery within six months maximum, I was so upset and frustrated and feeling very low with all the fatigue, SOBs, low quality of life, etc. I knew I needed the surgery two years earlier when I complained of extreme fatigue for three continous months; yet he ignored this fact because *I looked well* and I needed to force myself to walk. :mad2::thumbd:

Being upset, I asked him what would happen to me if I did not do the surgery. He calmly answered me: "you shall go *poof*" and made a gesture with his hand meaning I would disappear like smoke does in space!!

So, here is the answer! Not forgetting that low quality of life and increasing fatigue and depression and lack of concentration due to insufficient blood circulation...all which will be the person's life before the end comes! My life quality was SO bad since 2006...I was extremely fatigued for 3 continous months. I was advised to force myself to walk.:thumbd: instead of seeing a surgeon. And again in 2007, "force yourself to walk" while I was feeling dead. Luckily I survived and as my surgeon said: it was a miracle that I was alive with such calcified valves and deformed Aortic valve.

 

[Optimus]

What happens? Probate.

Seriously. I blew my mitral valve in late March or early April 2006. Despite being very symptomatic, my internist ignored my concerns, saying I just had left-over bronchitis. By Mid June I coughed so much from CHF I could not sleep. By mid July I had put on over 10 lbs of water from CHF. I was finally seen by a cardio and diagnosed in late August. Surgery Sept 5, 2006. By this time, I could not speak a full sentence without gasping for air, and was constantly coughing like I had pneumonia. If I had not had surgery, I would have died by Xmas. No joke.

Holy crap!!!! What is it with Doctors?? Even if you are asymptomatic for the most part like I was...Dude!! Bottom line seems to be similar to a blown tire...pull over and fix it...or you will be replacing more than just the tire!!! Thank God I got a second and third opinion....but only because I had to, and I had been driving with a flat for a LONG time. Wow Laurie, that's crazy!!! So sorry you went through that!

Susan.