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Whats the point.....................

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Mister_James

Active member
Joined
Aug 24, 2013
Messages
33
Location
NYC
So is the severe stenosis going to get better? As it is your heart is remodeling to accommodate the bad valve. The heart will become muscular, the ventricles will dilate and before you know it heart failure will be knocking on your door.
The pressure of stenotic valves can cause all manner of problems including stroke. What you are saying to us is you would rather collapse and be taken for an emergency surgery that will cost more, put more people at risk, take resources from those who need it.
The surgery will happen and if not timely oh well then but it is all your choice.
Good luck.
 

boneysjoint

New member
Joined
Dec 3, 2012
Messages
4
Location
London UK
I have an appointment with a health phychologist who treats people like me who show an intense grief response to these types of situations. He also suggested that a condition known as Tomophobia may be a real possibility with combined pre surgery PTSD as a reaction to the diagnosis. It does apparently cause some very irrational thoughts /actions that my head is full of. It isn't rational to have and deeply love three young children and yet refuse corrective surgery but that is where my head is. I appologise if my posts have offended any of you it was never my intention.
I am so pleased that you are able to get some support for the psychological side of this. I guess it was a great shock to you and I can understand the feelings of grief you have at the thought of losing the ability to live life as you do now. Try to remember how far this kind of surgery has progressed. The vast majority of people do get back to a normal life after recovery. Please try not to Google as that will mostly be incorrect doom and gloom. I wish you well on your journey, and good health post op.
 

afraidofsurgery

Well-known member
Joined
Mar 13, 2005
Messages
190
Location
Chicago Western 'burbs
When I was told my aortic valve needed to be replaced (severe regurgitation) I was convinced I would come out of the surgery a vegetable and was completely against having the surgery. I went on a 'watch, monitor, and wait' routine and was followed with echos. Several years later when I developed symptoms, I was told it was time and I was actually OK with it. It was very strange being admitted knowing what would happen. But after the surgery I immediately felt better. The warfarin has not been a problem - the dose is titrated to your diet so if you have a good management team there should not be any diet restrictions.

Hang in there, as you learn more I hope you will be able to imagine a better outcome for yourself. I couldn't at first either. I am now on a 'watch and wait' for an ascending aortic aneurism and although I am going through the same emotions I know the more I learn the less scary it is.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
178
"I would love to see what the stats are for year on year risk of death for driving and texting"
That is most likely a much riskier activity.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
178
I have a good friend who was riding his bicycle home from work in the bicycle lane. He was hit from behind by a car (driver was fiddling with their phone and crossed the lane).

He woke up in hospital with the news he was quadriplegic and would never walk again, perhaps never use his arms.

He was a programmer, so typing was what he did.

Many would (and do) give up, but as he had 2 lovely young daughters and a wife who loved him he stuck with it.

That sheet takes bravery because you know its the rest of your life like that.

I take my hat off to him

So what is the point?

I think monty python clarifies this well


ecce homo, ergo elk

my point is clarified here:
Points well taken. Then again, there is always the hope that we could just magically "get better"

 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
178
" My surgeon said only the living comment "
"The surgeons comments were (and I'll will be honest) utterly against joining any online forum in relation to the operation and he did reiterate the point several times."
I find his view on this remarkable. I found out about my situation 19 months ago and crossed over into the severe category 2 weeks ago. I have found this board incredibly supportive and helpful. Yes, only the living comment, but you want to be among the living and perhaps it is good to hear what those who have experienced valve surgery have to say about getting through this in one piece, making wise choices, and good health management after surgery to make sure that you stay among the living. And, as this forum has been around for a couple of decades, there is wisdom posted here from those who are no longer among the living and it is valued still.
You will get through this. As others have said, at some point you will look back at your pre-operation days and wonder what the worry was all about.

It may feel like we have been dealt a bad hand, but really not so much. I have plenty of friends who have lost a spouse at a young age, or lost children. Now, those are really hard circumstances to deal with. We, on the other hand, will almost certainly get through our surgery and have a near normal life expectancy. And, if you don't like the prospects of having a slightly lower life expectancy, go hard core on good health for the rest of your life - diet and exercise and read all the longevity literature and live it and your life expectancy will likely be just as good as anyone else, possibly even better, despite the hand you were dealt with your valve.
 
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Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
178
I know two people who are dying of pancreatic cancer. They would give anything to be in your shoes where a surgery would extend their lives.
Indeed. I've lost two friends and a grandfather to pancreatic cancer. As well as a cousin to brain cancer at age 44. I would take my BAV with severe aortic stenosis diagnosis any day. As you note, we have a surgery option which will extend our lives. Many are not so fortunate as we are.
 

bizinsider

Well-known member
Joined
Jun 27, 2016
Messages
104
Location
San Diego, CA
I know two people who are dying of pancreatic cancer. They would give anything to be in your shoes where a surgery would extend their lives.
Honeybunny's comments hit the bullseye. I remember when I was in my hotel room at the Cleveland Clinic before surgery. I was very confident, because everything I had read suggested the odds were overwhelmingly on my side. I looked out and saw the cancer center, and told my wife I would be considerably more concerned - even scared - if I was headed there. The difference is that cancer is a treatment that you hope results a cure (and thankfully, depending on the cancer, it usually is); heart surgery is a repair...kind of like fixing a car. Your feelings and fears are real, but doing nothing guarantees you that the car will wind up on the junk heap. Neither you nor your family want that. Just remember, odds of dying young, and probably with a sharp deterioration in your quality of life, are pretty much guaranteed if you do nothing. Odds of you living and thriving are high if you do something. And before you know it, this will all be in the rearview mirror....and you will get on with the rest of your life. Glad to hear you are getting some help. You have a full community of people cheering you on.
 

Justmadi

Member
Joined
Apr 1, 2016
Messages
17
Location
Wisconsin
I’m glad you are getting some help, because your fears are unfounded, as everyone here would attest to. Just an FYI...my first surgery was for an Ascending Aortic Aneurysm. I was fortunate it was caught in time because most people DIE when they have those.(John Ritter for example) That would be a distinct possibility in your case without the surgery. Like you, I was asymptomatic.
keep in touch with us
 

dornole

Well-known member
Joined
Jan 5, 2014
Messages
751
Location
Minnesota, US
You have also helped me by putting a name to my son's severe irrational fears of medical treatment which may help me find a psychologist who can treat them and enable him to successfully have vital care like vaccines and dental work done. I didn't know there were people who specialized in this, I will try to find one. So, thank you.
 

Art O Ceitinn

Active member
Joined
Aug 6, 2013
Messages
35
Location
Neuilly Plaisance
I had the a rotten year. January my sisters husband died ( he was part of the 2% ). March my brother died from cancer on his brain. My mother-in-law also died in March. In April I got the virus which has left me with some long term problems. I had a TIA in September and later had a MRI to check for any damage to my brain and they found some scarring. I also had a wonderful year I survived the virus, my daughter got a "très bien" in her BAC and is now studying Law in Paris. We had 3 week vacation in France and Spain. My wife is working from home and loves it. Most days I play table tennis and cycle 20 or 30 kilometers. Our bank balance is very healthy with our lack of ways to spend with the curfew here in France. I am a the glass is half full guy and love my journey through life as I do not believe in life after death. Jannerjohn I had my first OHS in 1966 when I was 15 years young.
 

AZ Don

Well-known member
Joined
Apr 23, 2013
Messages
700
Location
Phoenix, AZ
The points I made admittedly in my state of despair are all factual possibilities experienced by many and in part articulated as possibilities by my surgeon.
Have you ever read the information that comes with Prescription drugs? They list all kinds of hazards, most of which are very rare. You do a disservice to yourself and this community by listing all the things that you say you can't do after surgery, yet those of us who have had the surgery are doing all the time. Frankly your surgeon is wrong to tell you to ignore online groups. Has he ever had the surgery himself? We have and we know intimately what it's like to face OHS, to have OHS, and to recover from OHS. This group was a tremendous help to me though the process.

I suggest that you focus on the things that you can control. Your emotions by seeking help. Have you researched the top surgeons and hospitals in your area - and is your surgeon on that list? (Find a Castle Connolly Top Doctor can help with this). You could look for actual research on the long term effects of valve replacement or aneurysm repair rather than repeating nonsense - I don't have links handy but everything that I saw when I was facing aneurysm repair indicated a life expectancy comparable to someone that never had an aneurysm. That is certainly longer than someone who needs surgery and doesn't get it.
 

Chuck C

Well-known member
Joined
Dec 5, 2020
Messages
178
I had the a rotten year. January my sisters husband died ( he was part of the 2% ). March my brother died from cancer on his brain. My mother-in-law also died in March. In April I got the virus which has left me with some long term problems. I had a TIA in September and later had a MRI to check for any damage to my brain and they found some scarring. I also had a wonderful year I survived the virus, my daughter got a "très bien" in her BAC and is now studying Law in Paris. We had 3 week vacation in France and Spain. My wife is working from home and loves it. Most days I play table tennis and cycle 20 or 30 kilometers. Our bank balance is very healthy with our lack of ways to spend with the curfew here in France. I am a the glass is half full guy and love my journey through life as I do not believe in life after death. Jannerjohn I had my first OHS in 1966 when I was 15 years young.
Art, you have a great attitude. We can focus on the bad hand that we feel that we have been dealt and believe that life is terrible or we can focus on the joys of life. No one can deny that life is tragic. Ultimately, it is like watching a movie- we know that the ending will be a bad one. Something will get us all in the end. But, what do we make of our lives along the way? We can love one another and help other people and be thankful for each day that we have.
 
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