High school classmate refuses to undergo valve replacement . . . dies as a result

[Duffey]

I wish I had known Diana had aortic stenosis. We had reconnected in a very informal manner via Facebook so I was shocked to learn a few days ago that she had passed away at the age of 58. I was dismayed to learn that her death was a result of aortic stenosis. She was aware that she needed her valve replaced, but she chose not to undergo replacement. I've been told that she discounted the seriousness of the stenosis. She told her husband that she was having great difficulty breathing and then lost consciousness and couldn't be revived.

It's a sad situation. Even with the advancements made in valve replacement over the past 50 years, some still chose to not take advantage of the life saving surgery.:frown2:

 

[Johan]

This is so sad. I just hope her doctors made the seriousness of the situation very clear to her. I suppose in the end we have to make the choice.

While I was dillying-dallying about the timing of my surgery and the severity of my symptoms, the surgeon one day called me in and in no uncertain terms told me that aortic stenosis was a terminal disease and at my level of stenosis, sudden death was also a symptom. I had the surgery a month later....

 

[njean]

So sorry to read this, Mary! I wonder if your friend was in a deep state of denial and/or her doctors weren't clear enough with the consequences if she didn't have the surgery? Either way, it's a shame this happened to her in this day & age!

Too bad.

 

[Lily]

Life is Beautiful!

Life is Beautiful!

So sad, Mary. I'm sorry.

None of this may apply to your friend, but:

I wonder if the nature of the slow decline, caused from a gradual stenosis, can contribute to a patient's distorted viewpoint, or lack of hope for a healthier future, maybe a bit of a fatalistic mindset. So many here have mentioned something I thought too, pre-valve replacement, that they just weren't aging very well. I wonder if that's not a mistaken viewpoint that many gradually resign themselves to, perhaps even sub-consciously.

And then also there are some experiences I've read here which indicate that some patients don't want [to seem] to be a "bother" to their families.

That would be so sad, and such a lonely place to be.
Especially when life has so many wonderful and beautiful possibilities!

When a person is ill, sometimes they just can't hope, just can't see how much better things can be.

I read an interesting "saying" the other day: "The happiness of your life depends on the quality of your thoughts."

A good reminder too, this experience, to: Be kinder than necessary because we don't know what another person is dealing with.

 

[nngbwh]

Sorry to hear the sad news. Sometimes life is just not fair.

 

[Freddie]

Sorry to hear this. It's sad.

 

[dick0236]

Like Johan, my cardios told me in no uncertain terms that I would not live 10 years and had a one in four chance of sudden death. That put it all into perspective....and I am certainly glad that my docs were that candid with me. Unfortunately, some find the "fix" too be an impossible choice.

 

[Greg a]

so sad but I do think this thread should be a "sticky" for those in doubt or putting it off "till the timing is better"

 

[Bina]

I can relate to Johan's story too. My cardio visits had been upped to every 3 months and I was still refusing surgery. Partly because I am stubborn, was freaked out, and maybe I didn't relate to my cardio doc very well. He was just so nonchalant about the whole thing. When my GP chatted with me and brought out his medical "bible" reading the part about aortic stenosis and a longevity of 2 years for me, then I agreed to another test and another new, young, outspoken cardio doc cancelled the test half way through telling me I was in grave danger of dropping dead and she forbid me to drive my car until further notice. I guess that was the final straw for me. I sat in the hospital hallway and cried and cried. A couple of weeks later I saw the heart surgeon and had the heart cath, and 12 days after that I had OHS. Yes, it was incredibly rough, absolutely awful. BUT, I am still here for my family and am very grateful for that.
Sorry for my big story Mary, but my point is that maybe more doctors need to evaluate how they relate to terminal patients or when is the best time to refer a patient in denial to a psychologist.
My condolences on the loss of your newly found friend.

 

[Duffey]

I don't know, Bina. I think if she had found a group like VR she might have had the surgery. I know the ONLY reason I had mine was the knowledge that I would die if I didn't. Aortic stenosis is like being caught between a rock and a hard place. Diana ran out of time before she figured that out.

 

[ShezaGirlie]

Oh gosh, so sad Mary and I'm so sorry for you and her family. I was being treated with inhalers and pills by a quack who diagnosed me with bronchitis. I told him I'd never had that in my life and asked how long it took to get over it. He said - two weeks and I thought I can stand this for two weeks and get on with my life.

After one week I was dragged to the ER by family (one being a physician) and diagnosed in ER with severe aortic stenosis and told I needed a valve replacement. Of course I asked - what if I don't have it and the doc told me I'd be dead within a year. Whoa.....he got my attention...and 4 days later without ever leaving the hospital, I got a valve. I simply focused on the week and months post surgery and still remember my new cardiologist's words, "You can be healed"...!

 

[Guest]

Aye ... very sorry, Mary.

Thoughts/prayers en route.....



Cort | 37.m.IL.pigValve.pacemaker | 5 Monte Carlos + 1 Caprice Classic |* Rt 66+northwestUS, 2011?
MCs.CC + CHD.models.HO.legos.RadioShows + RoadTrips.us66 = http://www.chevyasylum.com/cort
"Death tore the pages all away" ... Kenney Chesney ... 'Who You'd Be Today'

 

[Philip B]

Tragic Choice

Tragic Choice

I hate to admit it, but I seriously considered not having my valve and aorta replaced. We weren't sure we could handle the surgery financially.

It's sad to see people make choices which result in tragic consequences.

-Philip

 

[heartdoc]

I am sorry to hear about your friend Diana. It is sad to see someone die of an easily preventable death. Denial and fear are sometimes our worst enemies. Severe Aortic Valve Stenosis should never be downplayed. Too many patients and sometimes their doctors make a wrong choice when they decide to wait. You'll find a very straightforward and informative article on what can be done to educate physicians and patients about this deadly disease and new minimally invasive ways to treat it at www.bigappleheartsurgery.com/page5.php

 

[Lily]

I am sorry to hear about your friend Diana. It is sad to see someone die of an easily preventable death. Denial and fear are sometimes our worst enemies. Severe Aortic Valve Stenosis should never be downplayed. Too many patients and sometimes their doctors make a wrong choice when they decide to wait. You'll find a very straightforward and informative article on what can be done to educate physicians and patients about this deadly disease and new minimally invasive ways to treat it at www.bigappleheartsurgery.com/page5.php

Hello HeartDoc; the links are very informative. Welcome to the site

 

[roundsgirl]

So sorry to hear about your friend. For those of you who had to have the surgery for aortic stenosis, what were your numbers? My original ohs was for regurtation and now I have stenosis on the tissue valve. My AV area is down to .084 cm2 and pressure gradients are running 60s and 30's. My doc. is talking about another ohs. I am so discouraged right now and not that educated on stenosis. Thanks in advance.

 

[ALCapshaw2]

So sorry to hear about your friend. For those of you who had to have the surgery for aortic stenosis, what were your numbers? My original ohs was for regurtation and now I have stenosis on the tissue valve. My AV area is down to .084 cm2 and pressure gradients are running 60s and 30's. My doc. is talking about another ohs. I am so discouraged right now and not that educated on stenosis. Thanks in advance.

Many Surgeons (and Cardiologists) recommend Aortic Valve Replacement when the effective Aortic Valve Area is 0.8 cm^2 or less. (Roundsgirl are you *sure* that your AV area is 0.084 cm^2? I'm hoping that you misplaced the decimal point! At 0.084 cm^2 i'm guessing that you wouldn't be able to even walk across the room)

'AL Capshaw'

 

[Cooker]

sorry for your loss ... so sad ... maybe her death will serve as a lesson to any lurking here that are putting off surgery ... when I asked about second opinions my PCP said it was a great idea as long as I was not looking for someone to tell me I did not need surgery but when I needed it ... I was told to choose not to have surgery was to choose death ... again, sorry ... ((((hugs))))

 

[roundsgirl]

yeah sorry Al it's 0.84 cm2.

 

[railrider 242]

So sorry

So sorry

I am new to the forum I first found out that I needed my valve replaced when I was 50 as well. 4 months later it was replaced that was nearly 6 years ago I will be 57 in March.