Not doing surgery

[DebbyA]

I didn't read this whole thread, so sorry if this is a duplicate. An answer to the original question: The Choice??????

 

[carolinemc]

Yes, I have had this exact thought many times throughout the last couple of years. I was diagnosed with moderate/severe stenosis and regurgitation at 12, but was never informed.

At 30 I was re-diagnosed with severe stenosis, regurgitation and an ascending aortic aneurysm. Told during a consult with a surgeon I needed a replacement immediately. I'm now 32, still haven't done it. In fact I've increased my activity level significantly over the last 2 years, no symptoms.

Will I have surgery? Not sure. I have no support for recovery, and much lesser surgeries in the past have left me with lifelong consequences due to surgical error and predatory providers. Not excited about putting my life in the hands of an industry that has screwed me over multiple times in the past.

Not to mention the cost, even with good health insurance I estimate a cost of between $20000 and $30000 between out of pocket and missed wages.

Finally there's the elephant in the room regarding valve choice, and I don't like any of them. I was excited about the Ross earlier this year and consulted with Dr. El-Hamamsy in NY. However, I started reading this forum and followed many of the links to various studies that painted the Ross in a much worse light than the surgeons who perform the procedure. More or less turned my back on it as an option at this point, and cancelled my date with the surgeon.

Bit long-winded, but what I'm trying to say is yes, I have thought about not having surgery and am currently on that path.

I did the surgery with no home care and did quite well. Paced myself when cleaning house and making meals. I would rather go through the surgery again to live, without it, I would have died. For my aortic valve was in serious red alert. And with good health insurance, I did not pay no $2,000 to $3,000. I only had to pay co pays for doctor visits and checkups.
But it is up to you, listen to sound advice and live, for medical science has much improved all types of surgeries on Open heart, you the only choice left, suffering a slow death. Good luck and hope you do not suffer much. For I have been a cardio patient since the day I was born, in the 1960's. So I have many experiences in cardio care for many years. And I have seen people die from no care. Your choice.

 

[Chuck C]

His plan was to put in a mechanical valve with expectation it would need to be replaced in 15-20 years,

I would definitely encourage you to get other medical opinions. A mechanical valve should last you the rest of your life. It is not 100% certain that it will, but I have never once heard of a surgeon or cardiologist telling someone to expect a mechanical valve to last 15-20 years. That is not supported by the data at all. I had my mechanical valve done at age 53 and was told it should last the rest of my life. Based on family history that would be something like 35+ years. There are many members here with mechanical valves that have been in place 30+ years and still going strong. @dick0236 had his mechanical valve done 55+ years ago and it is still going strong.

I do hope that you seek other surgical opinions and that, if you truly need surgery, that you choose life. Recovery is really not that bad for the vast majority, especially the young.

 

[thomas999]

I was literally saved from death, perhaps an hour or so from it, according to the surgeons who worked on me. They could see right thru my aorta like a piece of cellophane. A friend of mine, same age as me, fell over dead from his aneurysm at home, 2 wks before his scheduled surgery at the Cleveland Clinic. Sometimes life hands us situations that we don't want, but must choose to stay alive. Is this your situation? not for me to answer. We suffer/benefit from our choices. This choice is yours to make.

 

[Survived03]

I was literally saved from death, perhaps an hour or so from it, according to the surgeons who worked on me. They could see right thru my aorta like a piece of cellophane. A friend of mine, same age as me, fell over dead from his aneurysm at home, 2 wks before his scheduled surgery at the Cleveland Clinic. Sometimes life hands us situations that we don't want, but must choose to stay alive. Is this your situation? not for me to answer. We suffer/benefit from our choices. This choice is yours to make.

Right there with you. Surgeon said he could see light through my aorta when excised and reviewed. If I hadn't had some weird palpitations (plus talked to a friend whom was having benign palpitations and went to Dr) I would not have investigated the cause. I am thankful every day. Glad to hear you made it.

@newarrior, seriously, don't dink around. You will recover well. Your fatalistic thoughts, someday, may end up being something to laugh about. Don't you want to be there to find out?

And good luck, you have total strangers invested in your outcomes.

 

[pellicle]

seriously, don't dink around

sort of zombie thread revived by our new member (who's here to contribute nothing it seems). Happily he's now blocking me (or so he says)

its sort of zombie because its no longer the OP driving it (even though its not particularly long dead)

 

[preciosa1974]

Im not here to argue. I am A newbie anyways. Surgery was Thursday. I’ve done
This all in my own. As my daughter isn’t allowed to come to the hospital so my husband has been staying with her. Is it easy? No! Do I want to be here to see her grow up and be a part of life? Yes!

I found a fantastic group to work with. Do your research. My entire team has been absolutely amazing and it’s not even a “big” hospital.

 

[Survived03]

sort of zombie thread revived by our new member (who's here to contribute nothing it seems). Happily he's now blocking me (or so he says)
View attachment 888958

its sort of zombie because its no longer the OP driving it (even though its not particularly long dead)

Is this directed at me?

 

[ATHENS1964]

https://www.dicardiology.com/conten...hlight-impacts-aortic-stenosis-undertreatment

 

[pellicle]

Is this directed at me?

yes, only because you mentioned newwarrior (who has a patchy history of engaging)

 

[Rebecca]

Sorry to all that have to read the above. Keep your negative statements to yourself. I missed Hank who created this form. Dearly miss Ross who was the one that helped so many of us through our surgery.

 

[jeffp]

Yup. We old timers do remember and miss Hank and Ross ( and many others ).
So far as the internet goes; there’s less negativity here than most other places, especially in light of the current state of the world in general.

 

[pellicle]

Dearly miss Ross who was the one that helped so many of us through our surgery.

I miss Ross quite a bit too, while not via here we had many a conversation in his last years.

Ross was also playing an important role as a moderator of discussion and a final arbiter of "the bums rush" too. Hank I don't miss so much, granted it was him who created this site (and hats off for that) but that's pretty much all he did soon after that. Its pretty clear he let the site go to verging on ruin after Ross left. I think the best decision he made in that era was to sell the site, for now its properly maintained, updated with current security patches and people here are safe.

Yes, I mean that because I know that the data here was insecure and people had actually copied the whole site including all user data.


Testimony to Ross's work is not only all the sticky posts of his but even now 10 years after he's gone he's still the top poster by a big margin

RIP Ross.

 

[pellicle]

Yup. We old timers do remember and miss Hank and Ross ( and many others ).
So far as the internet goes; there’s less negativity here than most other places, especially in light of the current state of the world in general.

hear hear. I never met them but

• tobagotwo
• al capshaw
• and while I can't find his details Al Lodwick (who ran a site called warfarininfo many years back which was a beacon of data in an early world of information darkness

definitely rate a mention.

The negativity here is pretty scant really, unless "one" is a "woke sucking thumb in a safe space" type. Ross was also an arbiter of robust discussion and was of the view that as long as it was debate that argument could go on. Indeed the very basis of Science is to challenge ideas. If you don't challenge and then support your views its called religion (which I suspect is how a lot of folks think about the world).

I support the idea of argument being: a discussion and needing to justify a proposition. Sadly for some argument is just a back and forth with no evidence provided, which descends into did too : did not : did tooo mobius strip.

 

[oo0My_Valve0oo]

I missed that Jung video earlier. Jung is always thought provoking and insightful. The video is on point for this thread's topic. I would like to highlight that whomever constructed the video chose some wonderful paintings. With regards to technique, 95% of them are examples of masterful handling of edges and luscious painting.

 

[Rebecca]

I also miss I think it was grand bonnie who lived in Helen GA. I think she was the first one that responded to my first post. I remember someone posting how when he returned home on his motorcycle the painters had not cleaned up the job site. We don't have any rags. No problem he take his old tee shirt off and tear it in half. Here. When he is in the house he hears through the open window. We better not mess with this guy did you the scar on his chest. Also once one mom with a infant on warfarin in India had someone help her and infant doctor to get the warfarin levels corrected.

 

[pellicle]

Also once one mom with a infant on warfarin in India had someone help her and infant doctor to get the warfarin levels corrected.

as you may know, it is in the helping of mech valvers with warfarin and INR management that I do most of my actual effort (not simply advising) and I've helped a few from India as it happens too.

 

[tom in MO]

Yes, I have had this exact thought many times throughout the last couple of years. I was diagnosed with moderate/severe stenosis and regurgitation at 12, but was never informed.

At 30 I was re-diagnosed with severe stenosis, regurgitation and an ascending aortic aneurysm. Told during a consult with a surgeon I needed a replacement immediately. I'm now 32, still haven't done it. In fact I've increased my activity level significantly over the last 2 years, no symptoms.

Will I have surgery? Not sure. I have no support for recovery, and much lesser surgeries in the past have left me with lifelong consequences due to surgical error and predatory providers. Not excited about putting my life in the hands of an industry that has screwed me over multiple times in the past.

Not to mention the cost, even with good health insurance I estimate a cost of between $20000 and $30000 between out of pocket and missed wages.

Finally there's the elephant in the room regarding valve choice, and I don't like any of them. I was excited about the Ross earlier this year and consulted with Dr. El-Hamamsy in NY. However, I started reading this forum and followed many of the links to various studies that painted the Ross in a much worse light than the surgeons who perform the procedure. More or less turned my back on it as an option at this point, and cancelled my date with the surgeon.

Bit long-winded, but what I'm trying to say is yes, I have thought about not having surgery and am currently on that path.

Don't make mountains out of mole-hills.

Been screwed by doctors in the past? Find a different hospital and surgical team.

Cannot decide on valve type? The choice between bio and mech valve is only hard because they are both good choices. Warfarin is easier than insulin.

The cost???...you cannot take it with you, but if you go mech you may not ever need another operation

No family to help out in recovery? There are plenty of people whose life work is to help others and they can be at your side if you open up, ask and let them in.

Your path right now is not so much a natural death, but passive aggressive suicide. Maybe you need to see someone for depression.

Vaya con Dios.

 

[Teapotimus]

Been screwed by doctors in the past? Find a different hospital and surgical team.

That's putting it lightly.

Father in law died during a Whipple procedure. Mother in law died 3 days after a hip replacement in the rehab facility. Good friend died in her sleep one day after discharge from a bowel obstruction surgery.

Had my left hand partially crippled following a ganglionectomy at 14, constantly hurts, very reduced range of motion as well.

Couple other situations as well, but this isn't really the place to discuss those.

Cannot decide on valve type? The choice between bio and mech valve is only hard because they are both good choices. Warfarin is easier than insulin

I was settled on the Ross, but I can't ignore the long term studies regarding it's durability pointed out here. The current crop of pro Ross surgeons claim they have made significant improvements, but there's no way to know if that's true.

I know Dr. Skillington from Australia published results out to 15 years, claiming only a 4% reoperation rate... But this seems unrealistic when compared to other Ross series. In addition, due to the nature of the Ross those results would only be applicable to him anyways. Maybe Hamamsy can claim similar results, but it's essentially just taking his word for it.

Mech valve is a no-go, my grandfather had one (also a Bicuspid valve), but had significant issues with Warfarin, as in no matter how much effort he put into reaching a target range his INR was always significantly higher than it should have been. Warfarin sensitivity?

Tissue doesn't look very appealing, unless it comes with a punch card, which I don't think it does.

The cost???...you cannot take it with you, but if you go mech you may not ever need another operation

More concerned about putting myself into bankruptcy, months without pay, and the real possibility of losing my job (and health insurance) which I very much enjoy.

No family to help out in recovery? There are plenty of people whose life work is to help others and they can be at your side if you open up, ask and let them in

Nah, no family.

you need to see someone for depression.

Can't say I'm depressed, this situation (valve replacement) is about par for my life, slightly better than my mother using me as an ashtray and a bargaining chip for extra income from her clients while I was growing up.

I'm not even against the surgery, just don't like the options, and my second opinion team has managed to screw up my surveillance imaging to the point I don't know how usable it is and instilled a hefty amount of distrust in their opinions.

(Is it normal for one Cardiologist to see severe dilation of a ventricle and another say normal while looking at the same echo? Then commit both sets of measurement to record? Then have a third say that's normal? Maybe since they're all on the same team they're just remiss to point out mistakes.)

Coupled with the surgeon I spoke to having an asinine plan with the Mech valve, I'm more or less on the path to no surgery due to the sheer incompetence of the medical industry I've been so well acquainted with all my life. At least this has been my experience so far with the two "top-rated" cardiology hospitals in my state.

 

[pellicle]

Cannot decide on valve type? The choice between bio and mech valve is only hard because they are both good choices. Warfarin is easier than insulin.

this is exactly right. Its often that I say if you can't decide flip a coin.

If you're young and you pick a bio-prosthesis, then you'll have a redo in 10 or so years. No biggie, risky; but so too is not complying with ACT. In the leadup to your redo you'll understand more.

If you pick a mech then that's not perfect either but then nothing is. Dying is the only real certainty.