The Choice??????

Valve Replacement Forums

Help Support Valve Replacement Forums:

This site may earn a commission from merchant affiliate links, including eBay, Amazon, and others.

Cooker

Chillin, just chillin....
Supporting Member
Joined
Dec 15, 2005
Messages
10,556
Location
South Carolina
Hello,

I am not going to do this but I have never heard any talk about electing not to have surgery. I wonder how many folks choose not to go through with it and what the outcome is?:confused:

Any thoughts??

Cooker
 
No Choice Really

No Choice Really

If you do not have surgery, over time your heart will enlarge to compensate for the extra work load, this works up to a certain point. Once the heart get over a certain size its pumping efficiency falls and it also looses the ability to remodel back to normal after surgery, that is permanent damage. Once the heart can't supply enough blood to the body your in heart failure (CHF) this is graded from NYHA class 1 (few symptoms) to class 4 (lungs filling with fluid, continually breathless). Once symptoms of CHF start from valve related problems patients usually die within 2 years without surgery. :eek: I went into class 4 heart failure while waiting for surgery and had to have surgery delayed a week while 11 kg (24lb) of fluid was removed. :eek: I can tell you from personal experience this was much worse than the surgery and it is something I am certainly not in a hurry to revisit. :)
 
In my case I had a good valve, but I had an aneurysm of the ascending aorta. Given time if you avoid surgery what happens is that the aorta begins to split apart. If that were happen to you while you are in the hospital waiting room you will likely die, death comes that quick. There are a few people here that have survived such an event, but they are the lucky ones. Most do not. The actor John Ritter, for example, did not survive his event.
 
'Tis sad but true - if you put it off long enough you'll be so sick there won't be a choice except to have surgery or die. I was in chf, and honestly, I think that would be a terrible way to die - it was terrifying to wake up in the middle of the night gasping for breath.
 
I think there is info

I think there is info

on the web regarding this subject. I think I read somewhere that a severely regurgitating mitral valve will lead to death in about 5-10 years. Your heart does enlarge to compensate and that weakens the heart muscle which you sorely need to pump blood and that is "it." :(

Thank God for living in these miraculous times.

I told everyone when I had my surgery that if I were living 100, maybe even 50 years ago, people would have been whispering - "Poor Christina is dying from her weak heart, she is bedridden." :(

Anyway, to NOT have surgery would be unthinkable to me. Right now with the health problems I am having investigated, I am wondering if I should have waited a few more years for surgery, but hindsight is 20/20.

Christina L
 
Choosing to have or not to have a valve replacement is basically the same as choosing life or death. Choosing not to have surgery is basically saying "I choose to die". The only question that remains is how long it will take.

We did have one member a year or so ago, who's husband went so far as to schedule surgery and then chose not to have it. Last we heard, he had not changed his mind.
 
I used to counsel for Mended Hearts in New Jersey. Back in the early 1980's, one of my "patients" was a 32 year old woman who was dying from CHF due to mitral stenosis. She refused to have surgery because she was "afraid to die". It was not rational as she would die without surgery so I did not understand her thinking. I sometimes thought she liked the attention she received from being sick.

Anyway, she died about 1 year later after an extremely painful time.

That's what happens if you decide against surgery. Certainly a choice but one that really makes no sense in this day and age.
 
The statistics are fairly easy to find for this. The answer for severe stenosis or severe regurgitation is simply that you will die. Most times it will be slowly, painfully, and with severe incapacitation months or years before it happens. It's much, much worse than the surgery, and much longer term.

As far as the odds...

For simple aortic valve replacement, varying with age and assuming no critical comorbidities (concurrent illnesses), the odds of your demise range from 1% to 3%. Without surgery, your odds of dying from your valve condition are greater than 99%.

In this case, "Just say no" is a sucker's bet.

Best wishes,
 
Cooker. At first I thought, what a brazen, foolhearty question! But then I started reading the responses and they have been very informative. Interesting to consider the outcome for many of us who will be facing a second surgery by choice....if we choose a tissue valve. Really puts things in perspective to hear of these experiences. I am having an easy time with the stenosis and yet I am ready for surgery. I somehow (in a brazen and foolhearty way :) ) thought that the second time around (if I choose tissue at age 52) it would not be so rough to just wait it out, let it go downhill. Ha! Doesn't sound even remotely pleasant or optional!! So, in a weird way...thank you for bringing this up!!

Marguerite
 
Cooker:

About a year ago, I met a woman whose husband had died of mitral valve heart failure 6 months before. He had been told that he needed a mitral valve replacement., He was too afraid of having the surgery. Spent the last year of his life, in his chair, in his livingroom. One morning, when he could no longer breath, his wife called the ambulance, and he had died by the time they got to the hospital. Too sad for words. - Marybeth
 
those who opted not to

those who opted not to

Once it got around my workplace what was going on with me, a coworker told me of her first husband who refused to have the surgery and lasted a year. Another fellow had an uncle who thought he could do without the surgery and now his heart has deteriorated to the point where they can't do surgery now. He's been given 1-3 years to live.
 
Denial is a very powerful force. I was diagnosed a year ago with severe aortic regurgitation when I was asymptomatic. Even after a failed surgery to repair the valve last fall I still feel as good as I did a year ago.

My cardiologist and the surgeons I have consulted with have laid down the hard facts for me that I would eventually die without surgery. All of the research I have done leads to the same conclusion.

But there is still a very terrified and persuasive voice in my mind telling me that I can live with this condition; that I do not need surgery. I can be the one person whose heart can adapt to the overload and not fail. So what if I can't run a marathon? I can still live a long life with my own valve.

Do I know better? I must because I am going to surgery next week. But that voice is very persistent. Combine that with the unfathomable fear that accompanies the meer thought of open heart surgery and I can sympathize with those poor, pitiful souls who cannot bring themselves to accept the facts and take the only road that leads to a good shot at a long, productive and happy life.

Randy
 
Randy,

I see you had aortic repair 10/13. I had mine replaced 10/10/05. Now you're heading back to surgery? Forgive me if you've posted about it but what is wrong? It seems like I see a lot of members going back for repeat surgery after repair but no so many needing a second surgery after replacement. Is it just me? Anyway, best of luck to you. Where are you going to have it done?
 
In the '60 and '70....

In the '60 and '70....

......Heart pt. had to make this choice all the time. It was so dangerous
at that time, many made the choice to have a few more years of life, rather
than face a near certain death on the operating table!:(

I didn't have a choice- I didn't have long to live either way.
 
Decision of a Lifetime

Decision of a Lifetime

Here is a poignant article by one of the nation's greatest newspapermen who made this decision: not to have the surgery. He was 93, which factored heavily into his decision. But the outcome is clear: He wrote this in August, and he died the following April (2005).

(I don't agree with his concluding thoughts about there being no life after death, but it is a thought-provoking and wrenching article nonetheless.)

(From the Amherst College alumni magazine)

The Decision of a Lifetime
By Chalmers M. Roberts ?33

(When Chalmers Roberts retired in 1971, he had been a journalist for The Washington Post for more than 20 years. During that time, he covered most every kind of story. Besides serving as chief diplomatic correspondent, he wrote about the U.S. Supreme Court, Congress, the White House, the redevelopment of Southwest Washington in the early 1950s and the Watts riots in 1965, among many other subjects. He is the author of books on such topics as nuclear arms control and the joys of being a grandfather. This story, his last for the paper, appeared in the Post Aug. 28, 2004.)

I could be dead when you read this. But I thought it might be worthwhile to put down my thoughts about how I decided to skip a lifesaving heart operation.

I am a 93-year-old man with congestive heart failure. The operation I?m skipping would replace a heart valve that has given up on me with a new pig?s valve.

My cardiologist, whom I trust implicitly, and with whom I am now on intimate personal terms as I have never been with any other M.D., surprised me earlier this month. I had been in Sibley Memorial Hospital for a couple of days with problems caused by my faulty aortic valve. Dr. Ramin Oskoui asked me to consider having this open-heart surgery despite my age.

?If you were 83 and thought Herbert Hoover was still president, I wouldn?t suggest it,? Dr. Oskoui said. ?But your mind is in amazingly good shape and your body seems to be quite good. Think about it.?

He got my attention, of course.

I had a hard time getting to sleep that night, for all my thinking. Finally, my nurse brought me a Tylenol that got me to sleep. That Saturday afternoon, just three weeks ago, my eldest son, David, who lives in Newton, Mass., flew down to spend the weekend with me. We kicked the idea of the heart operation around at some length and in some detail. That Saturday night I woke up around 3 a.m. with my left arm in pain. It seemed to me that my arm was reminding me that I have a second serious problem; besides the heart valve, my spinal cord is a mess: The pads between the bones in my back are worn out, exposing the nerves, which caused me, a couple years ago, excruciating back pains. My back doctor sent me to Sibley?s pain center, where another doctor gave me a shot in exactly the right spot in my spine. This relieved the pain of my spinal stenosis for a couple of years, after which a second shot gave me another couple of years without hurting too much.

But when the pain again began to return and I asked my back doctor about a third shot, he began to talk to me about possible back surgery. I replied: ?Oh no, not at my age. I want a second opinion.? So he sent me down to another back doctor in one of those K Street medical buildings.

After he examined my MRI pictures, this doctor looked at me and said, ?At 92, with this back, no surgery.? I said, ?Doc, I love you.? He recommended a trip to the Sports Authority to buy a back pad. ?Wear it all day,? he said, ?and take it off when you go to bed.?

That I did, still do, even in the hospital. In fact, I?m now on my second pad. I call it my cummerbund, the pad men wear around the middle when they?re wearing a tuxedo. You also see many such pads on men in the Giant who do the checkout jobs, whose backs take a pounding from standing and stuffing your groceries in bags.

Dr. Oskoui thought that my back, while a problem, was strictly secondary to my heart valve problem. Doubtless true, but still something significant to consider in my deciding about a heart operation.

The next day, Sunday afternoon, all three of my children?David, Christopher, who was just back from the beach with his wife and four kids, and my faithful daughter, Patricia, who?d rushed out to Sibley to see me the first day?all gathered in my spacious single hospital room. Pat?s husband also sat in.

We had a great three-hour gabfest. I told stories on each of them as kids growing up in our house. We reminisced about all those years so long ago, about their mom, and then we got down to the serious business of the proposed heart operation.

Over about half a century I naturally had formed a view of each child?s personality, and I was glad to see that during this conversation, they ran true to my opinions of each one. Some stressed this point, others that one. Their opinions did not differ from what I had expected. They didn?t fully agree, but there was no violent opposition to one another. And they all agreed that I should make the final decision.

So I started to talk about where my mind had led me at this point. I said I had no problem with the operation itself?either it would succeed, which I assumed, or I?d die on the operating table. My problem was with post-op, the recovery, the rehab.

Dr. Oskoui had said I?d be in the hospital for about 10 days, then perhaps three weeks of rehab as an inpatient.

I began to recall what had happened to me during my few days already in Sibley: this test and then that one, the prodding and poking involved, lying flat on my back on a bed cart (a gurney) waiting to be moved from one place to another, then back to my bed. What would four or five more weeks of that be like after an operation? Plenty of tests, no doubt?and plenty of poking and prodding, no matter how excellent the nurses and technicians.

At 93, too, there?s a sort of indignity to men in all that. I?m not being a snob about it, just telling you about the rather human reaction. When one is younger, a lot younger than 93, one takes it more in stride. But at 93?not so easy.

And then the big question: If everything were to go successfully, operation and rehab, what would I come home to?

Most importantly to me, a house with no spouse. Maybe with all-day, all-night nurses for a spell. Would I get up enough strength to even be able to walk around again? All that strength I?d built up this summer by swimming in my pool surely would be gone. The summer would be over, the swimming ended for the year.

No spouse. Today, in August of 2004, I can say I?ve reached a point of reconciliation over my loss. You must know that Lois and I celebrated our 60th anniversary on Sept. 11, 2001?yes, that now-infamous day, as our 60th! The Sept. 11 when we married was a Saturday, so we could fly off on our honeymoon, but this Sept. 11 was a Tuesday. So we celebrated with a family dinner at home on Saturday night, Sept. 8. All three children, their spouses and all seven grandchildren were at the table. In a way, we had cheated those terrorists. So when the attack came the following Tuesday, Lois and I were still at the table, just finishing a leisurely breakfast when we got word: Turn on your TV. We saw the second plane hit the tower. We saw it all with awe.

The loss of a spouse?especially after such a long and loving marriage as ours of 60 years?is, I believe, the hardest blow in life. I lost Lois on Nov. 3, 2001. When she had fallen and broken a hip some years earlier, our way of life was vastly altered. We moved the bedroom down from the second floor to what had been built as a kids? playroom, then had become my office after retirement. I had grab bars put up for her in the tiny shower tucked into the corner of the small bathroom, and we made many other adjustments. In her last few years Lois developed dementia, but she knew me to the end.

Honestly, I have been attracted to many women, loved a few, but none as deeply, so passionately as Lois?Lopie, as her parents dubbed her and everyone called her once they knew her. She died at 92?I married an older woman. My darling Lopie (pronounced Low-Pea).

I could not face the first anniversary of her death alone, so I asked my daughter and son-in-law to have dinner with me. That helped. Oddly, very oddly, the morning after that first anniversary of her death I woke up feeling that a very large weight had been lifted from my chest. That was, I think, the moment of my acceptance of what I have called my ?reconciliation? to her death. Reconciliation, but no more.

All this came back to me as I thought through, as best I could, the suggested heart operation, the long rehabilitation?and all to come home to what? A house with no spouse.

Back when I was just 80 I wrote my last book, a lighthearted look at growing old titled How Did I Get Here So Fast? In it I gave my credo: ?Keep your heart pumping, your noodle active and your mood cheery.?

But I had assumed I?d always have my spouse, and I was wrong.

Not that I feel alone. My children have been superb, my grandchildren most satisfactory, and so have been many of my friends, neighbors new and old, so loving, so thoughtful, so great in rallying round. I surely do not complain there.

But I would be coming home without a spouse.

So what would happen if I decided not to have the operation? David put that question directly to Dr. Oskoui. Almost certainly, he replied, one of two outcomes will follow, and the chance of one is about the same as the chance of the second. One possibility is that my aortic valve explodes with a rush of blood filling my body, ending my life instantly. Or, I would again suffer from shortage of breath such as brought me to Sibley earlier this month. I would return to the hospital and would die in perhaps a couple of weeks as the valve slowly failed.

Without a spouse, not so bad a choice, it now seems to me. Most of us, contemplating death, hope to more or less drop dead. Quickly, unknowingly, painlessly. And I?d have a 50-50 shot at that. Not bad.

I might say, too, that I feel content. I?ve done my thing. Raised my kids. Helped each of them get a house. Did my newspapering, my journalism, as best I could, dammit. Had my byline in The Washington Post since 1949?not bad, either.

So that?s how I came to decide ?no? on the heart valve operation. I?m sorry I took so long to explain.

I do want to add a final word, about the hereafter. I do not believe in it. I think that the religions that promise various afterlife scenarios basically invented them to meet the longing for an answer to life?s mysteries. Indeed, my son David, a professor of astrophysics, tells me that colleagues have spent years listening to outer space for some word of some other life somewhere. I think we are too much bound in narrow ?Earth think.? Einstein, at least, began to think outside it.

I agree with Francis Crick, the eminent Cambridge don, the winner of the Nobel Prize for his co-discovery of the double helix, the blueprint of life, who wrote: ?In the fullness of time, educated people will believe there is no soul independent of the body, and hence no life after death.?
 
Rob,

That is one of the saddest stories I have ever read and I mean that in more ways than one.
 
I agree -

I agree -

he sounded like a very sad man. I, personally, do not understand how a person cannot believe in life after death. WHERE and HOW do atheists think we got here in the first place?? However, my mind cannot fathom life after death any more than it can fathom NO life after death - we are to have "faith as little children" per God and the Bible.

All that said, I saw my little brother (truly) the night my parents buried him at four years of age (he was killed in an accident). He (his spirit) was standing at the foot of my bed - I was nine years old, so there is NO ONE who can tell me there is not life after death.

Christina L
 
Christina L said:
he sounded like a very sad man. I, personally, do not understand how a person cannot believe in life after death. WHERE and HOW do atheists think we got here in the first place??
Christina L

The saddest part is to die with no hope.

Randy
 
I probably should have just posted a link to it instead of pasting it in. Sorry, didn't realize it would run that long.

There IS a great sadness to that story, but I must admit that when facing VR a year ago, the thought did across my mind a few times: well what if I just toughed it out. Surely by eating better and exercising, everything would get better. Not so, as far as leaky valve and enlarging heart. There's a finality to the decision to forego surgery. If you believe life is precious and worthwhile, you try to keep it going. When you further believe in life after death, there is an inner peace in accepting whatever the outcome of surgery will be.
 
Not sad to me

Not sad to me

I think the guy lived a full happy life and was content not to extend it.
Look at it this way- he had 90 years of great health. Not one of of here can
say that!

Besides the man was wrong to quote an SOB like Crick:


"I agree with Francis Crick, the eminent Cambridge don, the winner of the Nobel Prize for his co-discovery of the double helix, the blueprint of life,"

Crick did win the Nobel Prize, but there is good evidence I believe that
he stole the idea from a woman physicist who was working with X-rays and
had photographed the double helix. She was never given credit by Crick for what she had done. She died of cancer before it was revealed how her
work had been stolen. Why women( and men) don't protest the Nobel Comittee is beyond me!
 
Back
Top