listen to your cardiologist, not the internet!! Please!

[markp66]

Hi all.

Since I posted my 'what I asked my surgeon today' post re AVR replacement I've had a few messages from users about his answer to ' it should give you a normal life expectancy', even if you are 20-30 years old. Before he told me this I didn't really have a clue about the future and reading articles online didn't help much.

All I can say is that he said once the valve has been replaced it normally always restores satisfactory pressure gradients across the valve (bare in mind that many people live with mild-severe readings for 20-40 years before their valve needs replacing) and the new valve should restore normal heart function after it has remodelled itself to the new valve (as long as it hasn't been permanently damaged). Valve complications are very low. Tissue valves will need replacing after 10-15 or even 20 years in some patients and mechanical valves should last a lifetime (complications such as pannus and leaking around the edge of the valve are rare problems). Either way, re operation risks are not significantly different to the initial op. Even 2nd/ 3rd reops are possible with great results.

From a simplistic point of view it doesn't really seem like much can go wrong after a successful AVR if you keep healthy/ eat well and good INR monitoring/ dental hygiene etc... Am I missing something here? Is my surgeon correct? I'm pretty confident he is. I asked him to give me an honest answer and he did- "the valve replacement won't stop you getting cancer, coronary artery disease, other heart problems etc but it will
fix your valve problem. And if it needs to be replaced in the future then it will be replaced" So...the chances of dying from a valve related event are very low. As far as everyone on here is concerned I think we should stick to this understanding. It makes sense to me and I hope it will stop the negative outlook by some of us, including myself at one point (people I've messaged about this will tell you!)

I first posted about a month ago about some negative internet articles I read and thankfully people like Dick and others soon told me that these gave a highly inaccurate prognosis. You also have to remember that the newer valves have only been around for the last 25-30 years so it is obviously going to be impossible to draw conclusions about the longevity of mech valves. The manufacturers say they will last 200 years. Even if they are out by 150 it still gives 50 years!

I made the mistake of being taken in by unqualified/ understudied articles and it made me pretty anxious and depressed for a few months until I found this site. I think the main thing to do is trust what your cardio/ surgeon tells you. In fact I don't think it's even worth thinking about. Anyone who disagrees with any of the above then please do give your thoughts and views. I just think it's very easy to get drawn into all the complications of valve surgery (which are low) and at the same time ignore life complications (cancer, car accidents, murder rates, etc etc etc). If some of us thought about every day life like we did valve surgery we'd probably be locked up in a psychiatric ward!

So... Have the valve surgery and live!

 

[Julian]

Amen to that. One thing is for sure, unless a miracle occurs without valve replacement you will die sooner than later. You gotta ask yourself, if this surgery gives me 3 more years is it worth it? YES! Good news is, those that have valve surgery will probably live a normal quality of life with normal life expectancy and die of something completely unrelated to the heart.

 

[epstns]

Julian - I'll agree with you and add a point. For the most part, those of us who have had valve problems and corrective surgery or treatment are far more diligent than the average person about follow-up medical care, exams and monitoring of our hearts and cardio-vascular systems. So, if there is anything else that is going wrong, we will probably find out about it sooner and will have the opportunity to take action sooner than most patients would. Thus, if we are destined for further heart-related trouble, we are more likely to get treatment and possibly less likely to suffer consequences (even death) from it.

I'll also mention that in another thread I related a comment made to me by my electrophysiologist. He said that ". . . after valve surgery and pacemaker implant, the patient (me) should be looking forward to the same lifespan and quality of life he would have had if he had never needed valve surgery. Sounds to me like the ultimate "do-over."

 

[Optimus]

Mark P...... OUTSTANDING......you, sir....just wrote exactly what I have needed to hear!!!!! THANK YOU..... I too, was "wandering"...not "wondering"....WANDERING...or "creeping" as my daughters call it, on the internet, and even went to the Valve or Annuloplasty ring manufacturers site, and i could feel my BP rising as I was "creeping". Bottom line is....(and I am in the insurance business)...your chances of dying from some totally unrelated reason are probably much higher than from a faulty valve. Obviously we all want great surgeons, and great hospitals....but just hearing you say this makes me feel better. I am so tired of worrying. I want and NEED to be able to TRUST my new doc. Been burned in the past and really want to move past this and into a positive stream of existence, or I WILL be locked up. I am fortunate to be alive and I was cared for by a superb team of professionals.

Susan

 

[ElectLive]

If some of us thought about every day life like we did valve surgery we'd probably be locked up in a psychiatric ward!

So... Have the valve surgery and live!

Great finish to an excellent post, thanks for sharing your thoughts.

I didn't worry about my life expectancy before my heart surgery, so why should I now? I'm a 36 year old with an aortic valve that's better than it was 10 years ago. That's an upgrade.

I tell you what, 50 years from now, you and the other 20 year old's here will probably be sitting around complaining and worrying about "big" medical problems like hip and knee replacements...

 

[Eva]

After eight long months of anxiety, confusion, decision-making torture, inability to sleep, crying on and off, fatigued from surfing the Internet trying find answers here and there, I felt so sorry for myself After the surgery... I felt i wasted eight months in anxiety instead of relaxing and preparing myself mentally and emotionally.

I wished I just rushed into the OR and had the survey doneit instead of having wasted several months of research and research, after which i ended up with the very first surgeon I interviewed and with the recommendations he made!

So, yes, listen to your cardio and to your surgeon if you trust them and relax and get off the Internet to be ready for the surgery.I knew I needed surgery since I was 32 years young. The thought of dying from my heart having AVI & MVS which hovered over me for 55 years dissipitated when i almost died from a big fall on awet marble batgroom floor!i

Of course we need to educate ourselves a bit at least to be able to trust our doctors more when we understand what they are talking about.

Great post. Thanks.

 

[Cooker]

Good thread ... there are risk but as stated they are usually low (depending on one's situation) ... When I came here it was for information, support and hope; that's what I received ... I think some dwell on the possible complications ... both sides need to be passed along to those waiting on surgery but the main message should be hope and the great health and life most of us have gained from valve replacement.

 

[Randy Fecteau]

Thanks for the POST I thought it was just me going through all these much ado about nothing scared feelings and looking at the worst possible outcome .

 

[catwoman]

When my husband needed MV repair, we consulted the surgeon who did my MVR, then we saw Dr. William Ryan. Our cardiologist said to stop the consults, make a decision and have it done ASAP.
Because I had gone through surgery and had educated myself here, we already knew all the risks. My husband had seen his dad through two valve jobs, the first one only the MV, the second one 10 years later for an MV re-op, a new AV, aorta rebuilt and 4 bypasses.
So, when we heard to get 'er done, we called Dr. Ryan's office and said, "How soon can you do it?"

It gets down to having faith, too.

 

[markp66]

Thanks for the POST I thought it was just me going through all these much ado about nothing scared feelings and looking at the worst possible outcome .

Nope, I'm sure we have all been there. I certainly have! It's only natural I guess.

 

[LeakyUK]

I have not felt better, and happier, in years. My valve is now a friend & I enjoy listening to it. I needed antidepressants before the op to help cope, fortunately I only had a few months to wait.

 

[hook]

According to internet figures I should have been dead 25 years ago, But I feel what I would consider above average. It's all about taking care of yourself and doing the work.

 

[Scott]

Thanks for the post. I have about 36 hrs until I am supposed to show up for surgery. I really want to get in my car and just drive as far away as I can. Instead I am packing a bag and reading my pre-op procedures, and getting ready for one last day of work tomorrow. Your post has taken some of the edge off.

 

[Julian]

Thanks for the post. I have about 36 hrs until I am supposed to show up for surgery. I really want to get in my car and just drive as far away as I can. Instead I am packing a bag and reading my pre-op procedures, and getting ready for one last day of work tomorrow. Your post has taken some of the edge off.

Scott I suggest to get in that car and drive FAR AWAY! I'M JUST KIDDING! You will do fine, face this thing head on, eye to eye. Is it easy, HELL NO, is recovery a breeze, NO but people do it everyday and you can do it to. YOU WILL BE A BETTER PERSON AFTER! I've learned that through this whole process patience is the KEY! Give yourself a good year to recover before filing a complaint with the better business bureau. LOL

 

[Bill B]

Hey, this is the Internet! Seriously, I can't recall encountering much negative Internet press about VR. I guess I got lucky and missed the bad press wherever it might be. Unless you have some serious co-morbidity (e.g., lung, kidney disease) the odds are overwhelming that you will do very well. I accepted that and didn't worry about it beforehand. Also, I met my surgeon more than 3 months before the operation. He was very confidence-inspiring and reassuring. No doubt this was one of the most serious, life-changing events I ever encountered and it is definitely unsettling to have to confront such a profound health issue. In a way, we are fortunate that this major surgical procedure has become so routine and commonplace.