decision to not have surgery

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Gail K

Hi,

I have an in-law (I'll call him Jim) who has been told he needs valve replacement surgery. He is refusing to have it because he's afraid of
the surgery.

What happens if people who need valve replacements refuse to have the surgery - do they eventually die? Jim is a nice person and I'm worried. I don't know any of the details of his case or even which valve needs replacement. I'm just wondering if anyone knows about this in a general sense.

Thank you,
Gail
 
Surgery, it's better than the alternative

Surgery, it's better than the alternative

Gail as the cardio explained it to me most patients will die within 2 years of getting recognisable symptoms of heart failure if left untreated. :eek: The heart enlarges (from working harder) trying to compensate for the bad valve and heart failure results. Once the heart enlarges beyond a certain size it usually doesn't return to normal. So then even if the person chooses to have heart surgery when the heart failure gets to bad to handle their heart usually doesn't go back to normal and they doesn't get the full benefit. :( The older the patient the less likely the heart is to recover from heart failure. :(
Having experienced NYHA class 4 heart failure, I can say it is much worse than surgery. :eek:
Fortunately I was in the minority whose heart returned to normal size. :)
 
Gail, as someone who desperately wants, but may not be able to have, valve replacement number three; please tell Jim I'll gladly do a swap.:)

Unless there are side issues you have not posted, the choice is straightforward. The surgeons are offering Jim life, if he declines the result is death.
 
Without surgery he will die.

The surgery isn't all that bad and he'll find his fears are mostly unfounded. Get him in here and let us talk some sense into him. I can't bare to watch someone perish because of being afraid. The longer it's put off, the more damage is being done. If it advances too far, he'll never appreciate feeling well again.
 
The assumption is that Jim doesn't want the surgery because he's afraid that he will die. Understandable. However, without the surgery, he will definitely die within a few years of heart failure, assuming something else doesn't get him first. And it's not like he will be walking around like normal for four years and suddenly say, "Oh!," clutch his chest, and keel over. He will have long since become bedridden and unable to care for himself, using oxygen just to breathe at all.

It's that cold and certain an equation: either a slight risk now, or a sure and very unpleasant demise over a short course of a few, rapidly declining years. Add to this the fact that if he avoids the surgery now, he and others will realize that he doesn't have to be dying, that it was his choice. It will not seem like it was a good choice then.

Best wishes,
 
As everyone has said, when a valve fails, it's ADIOS AMIGO!

"Jim" needs to know that Valve Replacement Surgery is a Highly Refined Art that has an enormously High Rate of SUCCESS with only a 1% Risk of Mortality and 1% Risk of Morbidity vs. almost certain and prolonged Death.

Tell him to read the posts on VR.com to see how the thousands of people who have passed through have all flourished AFTER their Valve Replacement Surgery.

YES, VR is Major Surgery, but it is NOT as bad and NOT as painful as we all imagined BEFORE surgery. BTW, PAIN control is also a highly refined art and most of us just felt 'some discomfort' in our chests afterwards. OHS IS survivable and Life is almost always Way Better after getting 'fixed'.

'AL Capshaw'
 
Gail....as the others have posted, without the surgery the ultimate result will be death. That could be weeks, months, and in some instances a year or two away. Im 42, my Cardiologist told me that if he took 100 people with my condition (aortic valve, extreme calcification) and came back in 2 years, odds are at least 1/2 would be dead. That was enough for me. This type of surgery, which is a biggie when looking at surgery, has a very low mortality rate (less that 2%). Everyone freaks when they hear they have to have a procedure performed upon their heart. But if you look at the statistics you will see that not only do the overwhelming majority of the people survive the surgery, they thrive afterwards.
Have Jim look at this website and read through the posts. Im 3+ weeks post-op and am well on my way to getting back to living my life. I went to the Cardiologist yesterday, had an echo-cardiogram and the results were....totally normal heart function ! you want to talk about music to my ears !
There is some discomfort associated with the surgery but its not nearly as bad as I thought it was going to be. When your in the hospital after the procedure the nurses are through the room every few hours checking on you. The first question they ask is about your pain. If your in any, they adjust the medications accordingly. You also have the handy dandy call button. Pain management is handled, not a problem.
Good luck with Jim, hopefully you can persuade him to take a look on this site and have him research the stats surrounding this type of surgery. Its something he can make it through.
 
Gail,

Others have said it well. The choice in its starkest terms is between death and life. Death over a short period of time with a steadily declining quality of life versus a great chance at getting a new lease on life and being very active again. I am grateful I have been around for the births of grandchildren and to be able to play with them. Am making pancakes for a granddaughter this morning while she's on spring break from school. Without my surgery three years ago, I almost surely would not be here to do that

Yet I had some of the same thoughts "Jim" is having before surgery. Why not just try to get by without the surgery; let nature takes its course, so to speak. I think it would be a great idea if he read posts on here of the past few years to see how many people have enjoyed life more fully because of VR. Wishing him the best...
 
Dear 'Jim'

Gail is a dear friend to you - she is trying to save your life. You need friends like that.

ValveReplacement.com is a site that helps to save lives, just like Gail.

We have a membership of about 1500, most of whom have experienced valve replacement and are now enjoying lovely lives doing all the things they used to do from sitting on the front porch to running marathons to boating to working in their jobs. If they had decided not to have replacement, this site would not exist - or it would be very short on members. It is a site that answers all sorts of questions about valve replacement, supports all members in every way from registration right up to and beyond surgery for as long as they want to stay. I have been a member for more than 8 yrs. Many here have been members for years and choose to remain to help those who come after us so that they, too, might get their lives back. They chose to undergo surgery, some soreness and pain, than to give up their lives needlessly. You have loved ones who will miss you something awful, you know. If you choose not to come see us to find out what it's really all about, you might think of consulting a professional to help you through your fears. Most of us came here because of fear. If you don't have this done for you, you will get flowers but you won't see them.

I wish you well. Blessins............
 
Hi Gail,

I think "Jim" has to come and visit VR.com to help dispel the myths of OHS. OHS sounds a lot worse than it really is. I was in fact "pleasantly surprised" by the experience. Not that I'd want to do it again, but if I had to I would not hesitate.

This was my first surgery of any kind. In fact this was my first hospital stay as I had never been seriously ill or injured in my life. The most serious medical treatment I've had up to the OHS was a few stitches in the ER for a nasty cut. I even still have my tonsils. Yes, there are some calculated risks associated with OHS, but the risks of not having OHS are probably more certain and the odds would not be favouring "Jim".

Best wishes on whatever decision he makes, but I hope he'll come by and visit before he makes the decision.
 
Hi Gail -

Even though I always knew that my valve "would probably someday need replaced," I was kind of in a denial, not recognizing my symptoms for what they were and such. Even after the first surgeon said I needed surgery, I was fairly disbelieving and thought getting another expert opinion would be a good idea. It was. I even went for a third expert opinion.

Perhaps your friend would benefit from a second opinion? Maybe he's just too shocked to know what to do.
 
My husband was born at home and had never been to a doctor before going to see about his blood pressure and strange heart sounds that were heard during a physical in the van that came to his job(Thank God for that forced physical by his company). He was 50 years old when he went to my PCP and they did a echo and then sent him to a cardio and then straight to a surgeon. He had a bicuspid aortic valve and enlarged heart. He had no symptoms and the surgeon said if he waited for surgery he would probably live another year or two. He had surgery on 9/11/01 and is doing all the normal things he did before surgery. He has the ATS mechanical valve and except for an occassional high or low INR reading that we adjust his coumadin for he is doing great.
 
Bonzo Dog said:
Gail, as someone who desperately wants, but may not be able to have, valve replacement number three; please tell Jim I'll gladly do a swap.:)

Unless there are side issues you have not posted, the choice is straightforward. The surgeons are offering Jim life, if he declines the result is death.
Click to expand...

Gail,

I echo what Bonzo Dog says --- I too am in need of a 4th OHS to have my Mitral Mechanical Valve swapped out but I have been told by one of the top surgeon's in the world, "that the risks probably outweigh the benefits" :eek:
I am so terrified of the prospect of having to undergo another one but I know I will most likely die without it & may die with it! :eek:

So being that your friend is facing his first OHS without the complications of scar tissue build up from previous surgeries, his chances of making a full recovery & leading a normal life are great! The fear is normal; we've all experienced it; he'll get through it!

Best wishes & I hope you can convince him to go through with it! :)
 
Fear, is a powerful thing?.I hope he changes his mind?.I was told the same thing?that I would die without surgery and the chances of dying during surgery were very small?Seemed like a no brainer to me?But again, fear is very powerful.
 
It sounds like "Jim" thinks his choice is either having the surgery and risking death, or not having the surgery and having to live with a heart that is not functioning well. He may intellectually know that he will die if he doesn't have the surgery, but he's suffering from delusions of if you just ignore it, it will go away.

Someone needs to tell him plainly and simply "Jim" you're right. You do risk death by having your valve replaced. It's your first valve surgery so you have about a 1 - 2% risk of dying. If you don't have surgery, you have a 100% risk of dying. Valve problems do not miraculously get better and they do not stay the same. If he's reached the stage where surgery has been recommended - it demonstrates that it will only get worse.
 
At least three of Joe's highschool pals who were healthy guys, grew older and needed heart surgery, probably bypass. They were afraid, and didn't get it done.

Joe had rheumatic fever in highschool, and had a weak heart as a result, plus needed several valve surgeries as he grew older, which he had done.

One man passed away after being quite ill for a long time. The other dropped over while at a football game with his son, and never regained consciousness. The third I am not sure about, but he passed on from heart related problems.

Joe outlived them all, with his weak, much operated on heart and got to the age of 75, which I think is pretty respectable for someone who wasn't supposed to live past 50 w/o surgery.

So I KNOW that this surgery works. Was it difficult to go through? You bet, but what alternative was there, keeling over when it could have been fixed? Doesn't make much sense.

This is a problem that has a very good fix and will extend lives. Not every medical condition has a fix.
 
Sorry to drop this concept into the conversation, but perhaps this gentleman, "Jim", is severely depressed and possibly suicidal?? He may need therapy/treatment to help him make better medical choices. In the end, not every person has an automatic need/desire to live to old age. Maybe he feels he has lived long enough? Or maybe it is just plain, blind fear....that most of us experienced in varying degrees during our personal journey.

There are people who refuse cancer treatment. There also can be people who refuse heart surgery. We don't HAVE to agree to do it. Maybe this gentleman needs help to see the reasons he has to continue on in this beautiful life. He clearly needs help in one form or another and I hope that OP (who obviously cares about him) finds the winning combination to help him.
 
I can understand Jim as that was me three years ago. I almost waited too long and had begun feeling very tired and weak. Fortunetly my surgeon was a very down to earth man and told me that if I didn't have the valve fixed I was going to die. Now having been on both sides of the fence, I would choose the surgery again 10 fold. It's not that bad and the way I feel now is remarkable. Try to give him this site to read. It helped me a BUNCH and gave me the courage for surgery.
 
Sudden death is rare. But can occur. We had a friend (young man in his 30's) was very active, seemingly healthy. Died on his treadmill. My Dr. informed he needed surgery ASAP. He found another Dr. to give him another 6 months. He made it a week from the original DX. Never can tell.

I was scared to death (no pun) at the thought of having the surgery. After all, I had a 2 year old to care for at the time. Knew if I did not try...chances were higher that I would not make it another 6 months. Mind you, the decision was simpler than the surgery and recovery. 9 years later I am in good health and still here raising my child. :)

I think you know what (Jim) needs to do. Print out these responses and ask him to read them. Bit of tough love, but WELL worth the outcome!

Good luck and please keep us posted!
 
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