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

[pellicle]

I have never desputed anybody elses experiences nor would I.

so instead, you're saying that that 2% risk is unacceptable?

do you drive?

 

[pellicle]

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:

 

[dick0236]

I have never desputed anybody elses experiences nor would I.

I am not disputing your experiences. Our purpose in giving you a "kick in the pants" is to counter the misinformation you are getting somewhere else. No one is here by choice......but we try to put this stuff into its proper perspective.
BTW, I probably was as scared, as angry and as unwilling to accept reality as you. The reality is "it is what it is"........and will be much different than the thoughts you are "rolling around in your head"

 

[JannerJohn]

so instead, you're saying that that 2% risk is unacceptable?

do you drive?

In the engineering job I do 2% is a massive risk and this may be where my personnal worry comes from I deal daily in numbers where 0.001 is considered unacceptable and intolerable. But without wanting to be contradictory we all know the 98% is getting you off the table. Long term the sucess is considerably less. My surgeon said only the living comment and sometimes its a bit like that scene in Jaws where scars are being comparred.

 

[dick0236]

But without wanting to be contradictory we all know the 98% is getting you off the table. Long term the sucess is considerably less. My surgeon said only the living comment and sometimes its a bit like that scene in Jaws where scars are being comparred.

In reality, the looooooooong term success is zero........so what!

and did your surgeon really make a stupid comment like "only the living comment"......and he went to medical school to learn that.

I kinda remember a Jaws scene where the captain shows off his scars and I don't agree with your suggestion. Most of the "veterans" on this site post their responses to educate the newcomers.....not to brag. It is like another organization I belong to that that suggests....."take what you need and leave the rest".

 

[Superman]

Well, yeah, the long term survival rate of everyone is zero. Not sure what the “Long term success is considerably less”, comment is for.

We all know that success rates are largely impacted by comorbidities. Are you diabetic? Do you smoke? Are you obese? What’s your fitness level? Most studies that I’ve seen break down age and gender but they don’t tend to get more granular then that.

 

[JannerJohn]

In reality, the looooooooong term success is zero........so what!

and did your surgeon really make a stupid comment like "only the living comment"......and he went to medical school to learn that.

I kinda remember a Jaws scene where the captain shows off his scars and I don't agree with your suggestion. Most of the "veterans" on this site post their responses to educate the newcomers.....not to brag. It is like another organization I belong to that that suggests....."take what you need and leave the rest".

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. He is involved in achademic studies about just how psychologically harming they are to certain patient groups (maybe me). But hey ho I didnt take his advice. He did however say he would facilitate contact with any cardiothorasic surgeons globally I would wish to speak to for futher advice which was very considerate. Yes evidently the long term outcome (not sucess) is zero you are correct.

 

[elMIguel]

I'm new to this also so you can take what I say with a grain of salt.

Maybe contacting heart surgeons around the globe will be helpful to you. I don't think that there's a single path/method/process for coming to terms with this and maybe that is yours. I hope so. That said, I do think there's a reason that you chose to go against your doctors advice and joined this forum (I actually had the opposite advice FWIW). I think it would be helpful to consider what that reason was.

 

[Superman]

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. He is involved in achademic studies about just how psychologically harming they are to certain patient groups (maybe me). But hey ho I didnt take his advice. He did however say he would facilitate contact with any cardiothorasic surgeons globally I would wish to speak to for futher advice which was very considerate. Yes evidently the long term outcome (not sucess) is zero you are correct.

The thing about surgeons is, they are great at what they do. They get you through the procedure. They have a very high success rate. They do a couple annual follow up appointments. But they don’t live with it every day. They have studies to point to that mostly don’t apply to younger patients.

My biggest challenge has been finding an adult cardiologist that deals with congenital heart defects. Most deal with clogged arteries and congestive heart failure. Many are still hung up on literature that was written about warfarin when testing wasn’t easy, accessible, and reliable.

 

[pellicle]

In the engineering job I do 2% is a massive risk

Ok ... so if you are an engineer

1. life is not an engineering works, bridges stand longer than humans
2. you are not looking in detail and are assuming that its a slab of homogenous material, and that individual factors make no difference. That 2% is across all age groups in all surgeries. I would say its >99% for a man of 50 years old
3. research the median age of aortic valve surgery

if you were an engineer you'd seek to validate and verify the facts before refusing to believe the personal accounts of a whole bunch of actually experienced veterans.

Sure I had a bumpy ride (bumpier than most) but I'm here. You've entirely discounted and blocked that information.

Sure you haven't directly " disputed anybody elses experiences", - no you just think that it doesn't apply to you because somehow you're an outlier. You've brushed aside and refused to engage with anyones encouragement (factual or emotional).

Did it never occur to you that once you're over 50 nature doesn't give a rats arse about you and that you're already lucky (probably not).

So getting back to my question, which you've also failed to engage with: "DO YOU DRIVE"

https://www.iihs.org/topics/fatality-statistics/detail/state-by-state

There were 33,654 fatal motor vehicle crashes in the United States in 2018 in which 36,560 deaths occurred. This resulted in 11.2 deaths per 100,000 people and 1.13 deaths per 100 million miles traveled.​

do you touch the phone when you drive? Fiddle with the radio, argue with the kids ... look mate there is a ton of risks in life. Probably you were so busy calculating them you forgot about your own.

Focus on all the points raised here for a while, and read that book by Jordan.

Something philosophical to think about (because everything isn't stats, sometimes its human feelings, which I believe you are letting run away from you, again I suggest either counselling or just plain old "slap - get a grip on yourself man"

I hope you are not acting like this to your family

Lastly I hope you quickly move past this deep self pity stage and start facing and addressing and engaging with the actual problem

Its not helping you and I'm pretty confident its not helping your family.

Please, seek professional help or simply start listening to and trusting us.

 

[pellicle]

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.

unless he'd met us and found that we don't wind up people anxiety and stresses about "the horrors" but try to support people.

Is there something about you having a genuine psychological problem with anxiety and hypochondria you haven't (directly) told us about?

because "reiterate that several times" alludes to it.

 

[pellicle]

@JannerJohn
reflection on this matter makes me wonder if you are not suffering also from some sort of complicated acute grief reaction. I strongly suggest you see a psychologist about this. Then take @dick0236 's advice:

eat the elephant one bite at a time ...

Elizabeth Kubler-Ross wrote on the topic of this sort of grief:

Elisabeth Kübler-Ross - Wikipedia

the sort where is about your self and your facing of death (not the sort that for instance I went through). She had terminal incurable cancer ... you've got a >99% chance of being back out on the street with a new ticker and a bumpy ride for a few months.

Best Wishes

 

[Superman]

Curious how you and your family are managing the pandemic. You must be a wreck about that with the mortality rates once you’ve tested positive.

BTW, my kids were 7, 5, 3, and 5 months old when I had my most recent surgery 11 years ago. My youngest was born two years later. I coached their sports teams after that. Got to hold my infant daughter in my recovery chair while she was napping. And even gave her a bottle. Celebrated my oldest’s birthday pretty much the day I got out of the hospital. Life does go on. Unless it doesn’t. You can only do the best you can do either way.

 

[FishnFool]

Wow just wow, My libido is stronger than before my AVS. Both my wife and I are enjoying this new found strength. I suggest you see a shrink.......I was in your boat last Oct.

I reached out here and found that this group was the most honest group I could have learned from. I am 55 with three kids. My only thought about your first post is you were drinking and thinking.

I hope you find the strength to see the good in this. Btw with my new chest plate there are athletic people lifting 300 lbs at the gym.


Good luck and be good to yourself....you family may need you.

 

[vitdoc]

Nearly everyone on this site has gone through surgery/surgeries for valve and aortic disease. And many have explained that living with anticoagulation is not as big a deal as you surmise. The alternative without treatment is either heart failure and or aneurysm rupture or sudden death from arrhythmia.
The 98% survival figure takes on all comers and may be even better for a relatively young/healthy individual.

So those of us in the medical profession (of which I am) would use the scientific term that the decision to have surgery is a no brainer.

If knowing these facts doesn’t allow that then there may be some significant emotional/psychiatric issues that something like this forum can not address.
If necessary check into this issues.

I have always looked at my situation as being very fortunate having something that was highly fixable.
age 29 tissue valve aortic stenosis
35 reop St Jude mechanical-warfarin
59 aortic aneurysm repair and new St.Jude and pacemaker/heart block
68 mitral clips decompensated mitral insufficiency
72 Yesterday bought new road bicycle!

 

[caro]

The only “negative” of having my surgery already and getting my valve replaced is that my cardiologist says I’m no longer in the “high risk” group to get a covid vaccine so I probably have to wait until Summer to get vaccinated. LITERALLY that has been the only bummer because I want to get vaccinated so badly. I just had my one year OHS anniversary yesterday. I’m 31. I’m going to live a healthy and long life. My surgeon told me my mechanical valve could very well outlast someone who has zero heart problems. Surround yourself with people who can help you, people who are informed and have your best interest at heart. We can only share our experiences. We can’t make you believe us. That is up to you.

 

[dornole]

Surgeon says 98% success (really????) YES REALLY

Can I really still be an active father and engaged OF COURSE

Is this really living OH FOR CHRIST'S SAKE

Quite frankly I'd sooner sit it out. DEATH WISH? OKAY . . .

Well that's an option to be sure, go ahead and live with sudden death around the corner at anytime from your aneurysm and pending irreversible heart damage from the untreated severe stenosis. Please purchase a lot of life insurance so that your wife and children have an easier time financially after you die an early death that could have been prevented.

You make no sense at all. Please stop being so self-absorbed and making this difficult for everyone involved. You have no real choice. Get treated as soon as possible and get on with living in the real world with the people you love.

 

[greeny47]

I was 47 when I had my first OHS- aortic valve replacement/aneurysm repair.I got a tissue valve and nothing in my life changed after the surgery. I take an 81 mg aspirin a day- thats it.

 

[honeybunny]

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.

 

[JannerJohn]

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.