The Cost of Doing Business

[Johnpb]

Hello. First post.

I've just spoken to a surgeon who declared that my numbers indicate the risk if performing surgery is now lower than the risk of not performing surgery.

So I asked him what the risks were. He said that with both my root and my valve being replaced that the chance of death during the procedure would be 5-6%

Any comments?

(edited to take out excess spacing)

 

[Johnpb]

I'm sorry about the spacing. I copied and pasted that from a note so I'm not sure what happened.



At any rate, I am terrified to do anything. .

 

[q2bruiser]

Welcome to the board ... although so sorry for the circumstances. Unfortunately, there is no good answer to your question. But based on the situation described, it sounds like not doing anything with definitely result in mortality. If I am understanding it correctly, your chances for extending your life will require surgery.

Of all the organs inside the body, modern medicine probably know more about the heart than anything else. Modern medicine cannot find a cure for the cold, but it can fix just about anything with the heart. The fact your chances of extending life are 94%-95% with surgery versus the alternative, it will hopefully give you confidence of making the right choice.

 

[Johnpb]

Thank you for the beautiful response.

I just don't know if that's the way I want to die.

 

[Chuck C]

Hi John,

People will be able to give you more meaningful comment if you can provide more detials. What is your diagnosis? your age? I expect that this is your native valve and not a repeat surgery?

So I asked him what the risks were. He said that with both my root and my valve being replaced that the chance of death during the procedure would be 5-6%

The risk for this surgery is usually nowhere near that high. Is there something about your situation which makes you much higher risk than the average patient? The risk of this operation is generally about 2% when it is not an emergency surgery, and even lower at experienced clinics of high competency. See the study which I link below for more comment on mortality for this procedure.

At any rate, I am terrified to do anything.

When told that it is time for surgery, it is often overwhelming. But, in truth, your greatest risk is your fear causing you to avoid the surgery and put it off until it becomes an emergency situation.

There are hundreds of members here who have faced what you are facing and we came though ok and went on to live normal lives. I had the same procedure that you require- aortic valve replacement along with replacing my aortic root. I even got more than that replaced, as part of my ascending aorta was replaced as well. It was not a cake walk, but it really was not that bad. I'm now living a completely normal life and my diseased valve has been removed.

You may want to take a look at the study below. This involved the Bentall Procedure, which is the name for the procedure that you're facing. You may find the mortality statistics interesting. The overall mortality was actually 5.9% for the procedure. That is consistent with what you were told by your surgeon. However, you really need to look at the details, because there is a huge difference in mortality outcomes depending on whether the procedure was planned or was done as an emergency.

"Patients who were electively operated on had a 30-day mortality of 1.5% (n = 5) while it remained higher in urgent/emergent procedures (n = 25, 15.4%)"

Think about that for a moment. 1.5% risk when the procedure was planned and elective vs 15.4% mortality when the surgery did not happen until it was an emergency.
It is pretty clear from these numbers that one is much better off getting the surgery when their cardiologist/surgeon tell them that it's time to get it, rather than put it off until they need an emergency procedure.

https://www.frontiersin.org/articles/10.3389/fcvm.2022.867732/full
Please feel free to ask any questions. We are all here to help in any way we can.

 

[Survived03]

You have greater than a 1% chance of dying in a car accident on the way to the hospital. I personally feel that success rates in 94-96% range for heart surgery is pretty good. I don’t quite understand your entire medical condition but early death due to no intervention or emergency intervention carries higher odds of mortality.
It is scary, very scary. But at some point you have to turn the page and be confident in the surgical team because it will be out of your hands at that time. I wish you luck and strength getting yourself to that point.

 

[Johnpb]

I'm sorry. I believe it's my ascending aorta and the root. I'm a first timer who can't handle getting needle. I know everyone encouraging a procedure is right.

I'm 60 and had a major stroke in 2009....

 

[tommyboy14]

Hi John,

I am very sorry to hear about your stroke and I hope that you recovered as much as possible.

Are you on warfarin due to your stroke?

Have you been told that your valve needs replacing?

If there is any indication that aortic valve needs replacing, then if you are already on warfarin, you should go for a mechanical valve.

At 60 this is the only to ensure that your most likely outcome is only one surgery.

I had two one at 33 where I got a tissue valve and one last year which was a reoperation and got a mechanical valve. I should have gotten a mech valve from the start, but in good hands the risks of surgery are low.

I had the valve and aortic root replaced first time around and I was quoted mortality of less than 1% at the time.

I recommend that you see a couple of surgeons and that you also go to a big surgery center like the Cleveland Clinic.

Thanks
Tomasz

 

[pellicle]

Hi and welcome.

6am here in Oztrayliya ... so all good replies to your question (I confess I didn't read the replies in detail, but I have good faith in those members.

Now, just speaking from the perspective of having had 3 OHS over my lifetime (starting at 10yo) I can't say I understand how it is for anyone new. I can only imagine. Children get led into things with a trust that adults have trouble with in later life. So let me speak to that.

At any rate, I am terrified to do anything. .

I believe its related to lack of control. So I'll say that "deer in the headlights" is not a good responce. I'll leave this post here for you to consider the more abstract point of "are we ever really in control of much?"

http://cjeastwd.blogspot.com/2015/09/denial-or-delusion.html
So it comes down to trust. I believe in facts and numbers and while theory and conjectures are good we know that no casino offers good numbers, OHS on the other hand offers great numbers.

Further, the longer you delay past a certain point the worse it will be for you in recovery. This is undeniable based on evidence.

I believe it's my ascending aorta and the root. I'm a first timer who can't handle getting needle. I know everyone encouraging a procedure is right.

Yes, I've had my ascending aorta done and also my aortic root (that was done in 1992 IIRC when I got the homograft). So this complicated my surgery beyond anything you are likely to experience given that my 2011 surgery was my third and this will be your first, giving you room for a second if ever needed .

I wrote this in the days before I went in for my surgery:

http://cjeastwd.blogspot.com/2011/11/heart-of-matter.html
One thing I'm actually really glad of is that I did not get the On-X valve. Note in that blog post I was leaning towards the On-X, however note also that I wrote:

The other choice that the surgeon seems to be considering will be the one from ATS Medical (also pyrolytic carbon). Since he (rather than me) has more experience in this matter (implanting valves) I'll be relying on him to make the final choice "when he's in there and sees what he finds".​

So, now, I'm glad I got the ATS and everything I understood about warfarin (which wasn't much and I've have told you that then) was just "infused" general views which I now know to be 99% wrong.

To say I've learned a lot about the subject in the following years is an understatement.

So, when you know your data, and when the people start guiding you, be guided. For sure, drop in here and mention specifics and ask questions. I'm sure you'll find some helpful support.

Best Wishes

 

[jeffp]

Yup, it’s scary. My surgeon told me 4% chance of death during the procedure. Chance of death was 90+% in the next week, and guaranteed within the next month, without the procedure. I was a sick puppy. I figured that waiting on the impending heart failure would be a miserable way to go; better to go while under anesthesia. I already had a will and such so that was not on my mind. I had trust in the surgeon (only met him the day before) and was really at ease going into surgery. Woke up a few minutes later (or so it seemed - was actually 12 hours) intubated and knew I wasn’t dead.
Have faith, do what you have to do, and best wishes to see you here on the other side of the mountain.

 

[Rebecca]

I alway recommend a second opinion from a different doctor be it cardiologist or surgeon.
I had my little heart angel who I know that had three open heart surgery's before the age of two. Nine years later she had to have her mechanical valve replaced because of her growing. This last surgery she was in and out of the hospital many time. Good news is she is now back in school and also gaining weight. A good book to find at the library is
"Thriving with heart disease a Unique Program for you and your Family Live Happier Healthier, Longer" by Wayne M Sotile. Also did you know that Arnold Schwarzenegger had his heart valve replaced? He also has a book about it. He had to have had surgery again because tissue valves wear out.

 

[Croooser]

Lots of good comments from some of the regular suspects here.

FWIW:

In my case, educating myself about the issues with my heart (aortic valve stenosis + ascending aorta aneurysm) really went a long way toward reducing anxiety with respect to the likely outcomes for me.

Specifically:

• Acquiring a laymen's ability to read test results from echoes and CT scans
• Knowing where I stood at any given time on the range of mild to moderate to severe from test results
• Knowing when the risk of not having the surgery became greater than the risk of having it

In addition, only my opinion...but when I look at statistics like mortality or complication rates, I believe that they include some patients who are at much greater risk than I was due to other compelling health issues. That led me to believe that I had less risk than the statistical averages.

I would also echo Chuck's comment about ensuring that one seeks out a clinic and a surgeon with an excellent track record. I wanted to give myself the best possible chance for the best possible outcome.

One final thought with respect to surgery anxiety. There are many diseases and conditions where you have no long term chance of survival or at least no chance of a sustained good quality of life. The silver lining to these kinds of heart issues is that they are usually treated successfully and a majority of patients resume an excellent lifestyle with few if any negative consequences.

HTH

 

[Chuck C]

Also did you know that Arnold Schwarzenegger had his heart valve replaced? He also has a book about it. He had to have had surgery again because tissue valves wear out.

Yes, Arnold had to have aortic valve surgery around age 50 due to having a bicuspid valve. But, he actually has had 4 procedures so far. He chose to go with the Ross Procedure. Within one week he had to get another OHS for a repair, because he started exercising hard too soon. Then, about 20 years later he had to get his donor pulmonary valve replaced. About 2 years after that he had to get procedure #4, when his aortic valve gave out.
An interesting note from his story. Those who promote the Ross often assure their patients not to worry about future procedures for both these valves, as they can just be done minimally via catheter. In reality, it is far from certain that this will be possible and the patient has to be evaluated for TAVR or TPVR. In Arnold's case, he had hoped for TPVR for his pulmonary procedure, but it turned out that he had to get OHS again. It is an interesting story- link below.

https://www.medpagetoday.com/popmedicine/celebritydiagnosis/89475

 

[Gail in Ca]

I have had surgeons that were very confident and made me feel like I would survive. My 1st surgery was aortic valve and Dacron graft in ‘89. I was told the risk was 5%. My 2nd. surgery I think was about the same risk. But my 3rd, after bacterial endocarditis, was riskier and I didn’t research it or ask. I didn’t want to know. I came through all with excellent results. After my 3rd, I saw that my risk was 25%!
When you have to have surgery, it’s just trust in your Dr and team and a great hospital. Good luck. You’ll do fine!

 

[Rebecca]

Yes, Arnold had to have aortic valve surgery around age 50 due to having a bicuspid valve. But, he actually has had 4 procedures so far. He chose to go with the Ross Procedure. Within one week he had to get another OHS for a repair, because he started exercising hard too soon. Then, about 20 years later he had to get his donor pulmonary valve replaced. About 2 years after that he had to get procedure #4, when his aortic valve gave out.
An interesting note from his story. Those who promote the Ross often assure their patients not to worry about future procedures for both these valves, as they can just be done minimally via catheter. In reality, it is far from certain that this will be possible and the patient has to be evaluated for TAVR or TPVR. In Arnold's case, he had hoped for TPVR for his pulmonary procedure, but it turned out that he had to get OHS again. It is an interesting story- link below.

https://www.medpagetoday.com/popmedicine/celebritydiagnosis/89475

Thank you for the up date. All I remember back when I was in my forties I found comfort in knowing that Arnold had surgery and was back doing movies and some of his own stunts again.

 

[pellicle]

I found comfort in knowing that Arnold had surgery and was back doing

I'd say that the vast and overwhelming majority who have valve replacement are back and doing better than before the surgery within 6 months.

Especially those younger than 60

 

[carolinemc]

Thank you for the beautiful response.

I just don't know if that's the way I want to die.

Riskier if you have other health issues. But with just the heart issues, the risks are minimum at best. Many here have had quadruple bypass and survived for years to come. Heart surgery has come a long way from the dark ages of the 1950's when it was still very much on testing stages. Modern medicine in the heart medicine field have made many strides and more people survive these days. Even unborn babies have had OHS while in the womb. Modern miracles. Risks are less, not doing anything, riskier for death. I would go for surgery.

 

[carolinemc]

I alway recommend a second opinion from a different doctor be it cardiologist or surgeon.
I had my little heart angel who I know that had three open heart surgery's before the age of two. Nine years later she had to have her mechanical valve replaced because of her growing. This last surgery she was in and out of the hospital many time. Good news is she is now back in school and also gaining weight. A good book to find at the library is
"Thriving with heart disease a Unique Program for you and your Family Live Happier Healthier, Longer" by Wayne M Sotile. Also did you know that Arnold Schwarzenegger had his heart valve replaced? He also has a book about it. He had to have had surgery again because tissue valves wear out.

I had the same surgery as Arnold, due to the valve was in bad shape, and the repair was not guaranteed to last. I had the St. Jude's valve. Now having Mitral Valve calcification. They are just watching it for now.

 

[vitdoc]

Medicine is not a science. Medicine uses statistical data to help in making informed decisions. There might be multitudes of reports on complications and death rates with cardiac surgical procedures. There is often a significant range from study to study. Patient populations are different, the locations and surgeons are different the anesthesia approaches may be different. Some studies are from one hospital and others are amalgamations of several institutions. When were the studies done? Recently, 10 years ago etc..
So in reality death rates could be reported from 1% to 5% for the same or similar procedures and not truly reflect true differences.
But if nothing is done and the valve issue is getting critical than the few year survival may be quite low.
So one can choose a low risk percentage procedure now or signicant disability and probable death in a few years.
Certainly getting another opinion about the severity of the problem might be helpful. If by chance the severity was oversold then maybe the issue could be monitored. But if there is agreement that it is getting severe then there really isn't much of a choice.
Good luck and think how lucky you are in having a medical problem with such a high rate of success.

 

[Chuck C]

To underscore the importance of getting valve surgery when it is time to get it, take a look at this survival graph below. This shows the rate of survival after the onset of severe symptoms with aortic stenosis. Basically, after the onset of symptoms, the survival curve is a cliff. When your medical team indicates that it is time for surgery, it is time to get very serious about things. Get a second opinion perhaps, but don't delay.

https://www.ahajournals.org/doi/full/10.1161/CIRCULATIONAHA.118.033408