Newbie - I meet with my surgeon next week

[funzel]

I am 48 and have known for about a year now that my stenosis would require a valve replacement. My cardiologist is sending me to meet with the surgeon he prefers in their practice. My wife and I have a 7 month old and my head is just spinning right now. I want to be educated but sometimes it is over kill. I am reading a 4-5% mortality rate with the procedure. It will be open heart - I have a bicuspid valve so I have no choice here. And I have been reading so much and find conflicting data about longevity with a mechanical valve. Some as low as 12 - 16 years? Needless to stay I am freaking out a bit - so much to process here. I am also worried about my life after this - as I said, I have a 7 month old and am a pretty active guy so I am concerned about limitations after. I have read some posts and even here it seems that some opinions are all over the place.

 

[FredW]

Welcome to the forum Funzel. First take a deep breath and relax. You came to a good place to get support and learn.

Open Heart Surgery is scary at first, but as you learn more and become educated, you will find it is normally very safe and effective. I also went through the same concerns as you did. I had 7 years to think about it and for the last two years prior surgery, I did plenty of research. The mortality rate I found, and my docs confirmed, is around 1 - 2%. Valves longevity vary on the type and when they were installed. Mechanical valves last a lifetime, today's tissue valves last 12 - 20 years. There is always some risk that other factors than the valve failure can cause complications and the need for more work, but that is rare. Life after a new valve is installed can be the same as if you had no problem. Healing from OHS does take some time, but it is normally more scary than a real issue.

Read and search for information here and you will find great input on valve choice, managing blood thinners if you choose a mechanical valve, what happens before and after surgery, how to cope with healing, things your family will need to prepare for, and other things.

Best of luck to you. You will be fine.

Fred

 

[neil]

hi funzel, its normal to be nervous and unsure, what you got to remember is you are going to make a choice which is going to save your life, am sure others will chime in and give there opinions and it really is down to you which path you go down, you have to pick for you not what anybody else would choose for you, Imo both have good and bad and it boils down to either tissue and a re op down the line or mech and being on warfarin which some don't mind but others do,Imo you have to make a choice for what you want nobody else, Your life after ohs will be fine, I was told mortality was 1or 2 % so that's pretty good,

 

[Superman]

I am 48 and have known for about a year now that my stenosis would require a valve replacement. My cardiologist is sending me to meet with the surgeon he prefers in their practice. My wife and I have a 7 month old and my head is just spinning right now. I want to be educated but sometimes it is over kill. I am reading a 4-5% mortality rate with the procedure. It will be open heart - I have a bicuspid valve so I have no choice here. And I have been reading so much and find conflicting data about longevity with a mechanical valve. Some as low as 12 - 16 years? Needless to stay I am freaking out a bit - so much to process here. I am also worried about my life after this - as I said, I have a 7 month old and am a pretty active guy so I am concerned about limitations after. I have read some posts and even here it seems that some opinions are all over the place.

Welcome to the board, and good luck.

The last time I had open heart (aortic aneurysm), I was 36 years old. My first was when I was 17. Doing the math there - I've been clicking away for over 26 years now! Got mechanical both times. The aneurysm drove my second surgery, otherwise I'm confident I would still be on my original replacement valve.

I have five kids. #4 was just over 5 months old when I had my second open heart. Got out of changing diapers for a bit, but I was able to hold her and rock her in a chair. My boys were 3, 5, and 7 years at the time. They were quite helpful.

Don't get too alarmed by statistics. This is generally a procedure done in older individuals. Pay close attention to the ages of the patients in the studies. When they are talking 12 - 16 years, are your sure that's mechanical, or "artificial" (which can include tissue valves harvested from animals or cadavers)? Is the average age of participants in their 60's or 70's? Then 12 - 16 years wouldn't be so unusual.

Can you find a study that has the average participant being a 48 year old, otherwise healthy male, being treated for BAV, with a mechanical valve? Not so easy.

 

[LondonAndy]

Hi Funzel, and welcome. I sometimes think that knowing a long time in advance what you are going to have to go through is the worst thing - time to worry about everything during and after the op. I had my aortic valve replaced a little over 2 years ago, at age 49. Mine ended up being an emergency case, going in by ambulance as the stenosis had got so bad I had what I THOUGHT was a heart attack but wasn't actually that serious (they called it a 'cardiac event'). So I didn't have long to think about it.

Yes, there are risks with the surgery of course, but (a) it is less than that here in the UK, at 1 - 3% and I would expect similar in the US, and (b) it is a much lower risk than NOT doing it. Once aortic stenosis is severe, you have a 100% risk of death within about 2 years.

If you go for a mechanical valve, the risks after surgery probably relate to bruising and bleeding as a result of being on anti-coagulation (AC). I notice from your profile that you have Afib too, so perhaps you are already on AC? Anyway, this means risk from impacts from contact sports etc, or if you fall off a bike and so on. It's worth remembering that you may be on AC therapy with a tissue valve too. Good management of your AC is crucial, and so do push for being able to self-test with a home machine like the CoaguChek XS. Research here in the UK (available at https://www.nice.org.uk/guidance/dg14 ) has led to our national regulator recommending this as best practice, with patients far more likely to maintain their correct INR range than if managed at a clinic. This is important, reducing the bleeding and clotting risks. Being in the right range will help your valve last longer, and I am expecting at least 20 years life from my mechanical valve; in fact hopefully it will never need replacing.

I'll end here as I am sure others will be able to make better points, but hope this helps reduce your fears a little, and that you can look forward to a normal life after surgery..

 

[jwinter]

Welcome and we all (ok, so most of us) know how it feels to get the news that we need heart surgery. Lots of nice people here and also information. I thought about asking the mortality rate question and then decided it really doesn't matter as what can you do? Not have the surgery? Not an option. Knowledge builds confidence and really helps as you go forward. Good luck and keep us posted.

 

[jwinter]

double post, oops!

 

[dick0236]

......... Needless to stay I am freaking out a bit - so much to process here. I am also worried about my life after this - as I said, I have a 7 month old and am a pretty active guy so I am concerned about limitations after. I have read some posts and even here it seems that some opinions are all over the place.

First thing to do is take a deep breath and remember that you need to eat this elephant one bite at a time. This is one of the best.....maybe THE best forum for support and info for valve surgery patients BY valve surgery patients. Your mortality figures are old and outdated.....that's what they where in the 1960s but are 1%-2% now......even less if it's a planned (non-emergency) surgery. 12-16 year longevity of a mechanical is simply not true......more like many decades or even a normal lifetime......I got mine at age 31 in 1967 and still have it......It will be fifty years old next August 2017. Life after your surgery will be like any normal life and you will be able to do whatever "floats your boat".

BTW, my sons where 6 and 8 years old when I had the surgery........now they have kids who have had kids.......and now I am a great-grandpa (three in the pasture and one in the barn).

 

[pellicle]

Hi and Welcome

I am 48 and have known for about a year now that my stenosis would require a valve replacement. My cardiologist is sending me to meet with the surgeon he prefers in their practice. ... and am a pretty active guy so I am concerned about limitations after. I have read some posts and even here it seems that some opinions are all over the place.

I guess that the first thing to say is "think of it like trying to pull an unravelled ball of string out of a box"

It seems a mess but you can't cut it into pieces. So the method is to just find and end and work methodically. If you keep notes on what you've found you may be able to refer back to things and see them again differently.

The string will present itself after you work the problem and pull the lengths gradually through the tangles,

Opinions differ because situations differ, circumstances differ and people differ. People differ in their emotional needs as well as their medical needs.

First cab off the rank is "you're a pretty active guy" ... well there is no reason that has to change. Indeed after surgery you'll be able to go back to being active, and its quite likely you'll find you're at a level of fitness after a bit that you haven't been at for ages. Myself (after my 2011 surgery) by 2014 I was out in the snow doing my personal best times ever in cross country skiing.

For instance: this is about as hard as it gets and she did it with a mechanical valve ...
http://www.heart-valve-surgery.com/h...e-replacement/

Valve choice is a matter for your to decide. There are facts and there are feelings. Only you can decide what is right for your as feelings can be as powerful as facts for some. As I wrote recently, a quote from the American Heart Association:

Prosthetic Heart Valves

Selection of the Optimal Prosthesis and Long-Term Management


Despite the marked improvements in prosthetic valve design and surgical procedures over the past decades, valve replacement does not provide a definitive cure to the patient. Instead, native valve disease is traded for “prosthetic valve disease,” ... Nonetheless, many of the prosthesis-related complications can be prevented or their impact minimized through optimal prosthesis selection in the individual patient and careful medical management and follow-up after implantation.

Reference URL here:
http://circ.ahajournals.org/content/119/7/1034.full

This means that there is no "perfect choice" and for each choice are management alternatives.

Don't be too perturbed about the operation, I've managed to survive three, but then I started my career young. I don't think its a good idea to have many, but you know, you have as many as you need.

When making your choices be careful to weigh actual facts and actual established data as part of your process. We can help you here by answering questions. So ask your questions and listen to any answers and then go verify if those answers stand up to scrutiny ...

Then when you have the facts unravelled you can begin to make more sense out of what seems to be contradictory answers and find the answers that fit you.

Best Wishes

 

[pellicle]

BTW, my sons where 6 and 8 years old when I had the surgery........now they have kids who have had kids.......and now I am a great-grandpa (three in the barn and one on the way).

love your work **** ...

 

[Flor1]

I had cath Thursday confirmed I have to have aortic valve replacement. Heads spinning trying to figure out which type of valve to get at 67 would like to make this a one shot deal.
If anyone hear can point me in the right direction for information would be greatly appreciated.

 

[jwinter]

Flor1 the only thing I can tell you is I had my first aortic valve replacement in 2012 and had a porcine (tissue valve). It failed this last May and had it replaced with an On-X mechanical valve November 1.

Lots of things have happened since that first valve (medically) but I prefer to look forward, not back.

I am 60 now and happy with this choice. Main thing is to make your choice and then be secure in it.

Good luck to you.

 

[honeybunny]

Flor1, you might want to post your question as a separate post so it will stand out from this one. You might get more responses if you did. At 61 I had a tissue valve done but I'm prepared to have another surgery if I outlive the device. To reduce dramatically the odds of a second surgery, you should consider a mechanical valve.

Funzel, you received a lot of great advice above. The only thing I will add is the reminder that your health issue is fixable. Of course there are risks but that is the case with nearly all medical procedures. AVR has become a routine procedure. Will your life change? Yes, to some extent. It changes every day. My knees can't handle too many flights of stairs anymore. My hearing isn't what it used to be. But you'll see from other posters that things go on mostly in a normal fashion, especially for those of your age.

I wish both of you the best for successfully surgeries and recoveries. Keep us posted. We care.

Hugs,
Michele

 

[pellicle]

Hi

I had cath Thursday confirmed I have to have aortic valve replacement. Heads spinning trying to figure out which type of valve to get at 67 would like to make this a one shot deal.
If anyone hear can point me in the right direction for information would be greatly appreciated.

basically don't stress ... at 67 what ever your surgeon suggests will be fine There are no bad choices and to my mind you're not young enough to be substantially benefited by a mechanical valve. Tissue valves are like "Gas" (to use the strange term Americans use for a liquid fuel when indeed gas is sold for BBQ's) ... the Fuel companies will tell you how much better theirs is, but no body notices when driving.

 

[George in Denver]

Flor1 the only thing I can tell you is I had my first aortic valve replacement in 2012 and had a porcine (tissue valve). It failed this last May and had it replaced with an On-X mechanical valve November 1.

Lots of things have happened since that first valve (medically) but I prefer to look forward, not back.

I am 60 now and happy with this choice. Main thing is to make your choice and then be secure in it.

Good luck to you.

This describes my experience exactly: porcine tissue AVR in November, 2013, which began leaking almost immediately and had to be replaced this August. First vavle was a Medtronic Mosaic porcine valve--which I NOW know had generated concern (even before my surgery) among researchers owing to premature failure. This time around I chose the On-X valve. I don't fear OHS like I did before my first procedure--buy boy do I remember so well your your anxieties before my first surgery, Flor1 and funzel--but I didn't want to put myself and my family through a series of repeat surgeries (when the risks do become significant) by opting for another tissue valve. Have had the On-X valve now for under 4 months, and the adjustment to Warfarin has been entirely uneventful. Back to swimming hard, without any cardiologist-imposed restrictions--and feeling so fortunate and optimistic about the future. BTW: Am 60 years old. My parents both survived into their 90s--and so though I'm at an age when another tissue valve might have been appropriate, I'm "young" relative to expected lifespan. That factored into the decision to get the mechanical valve this time around. That said, my cardiologist made clear that he could easily justify either another tissue or a mechanical valve--so my choice was driven not by medical science so much as by a strong feeling that I'd like to reduce the chances of needing a third round of OHS.

Final thought: As an OHS veteran--like so many others in this forum--I can tell you that the worst part of both my surgeries was the pre- and post-surgery anxiety. The actual event itself was un-fun, but not at all horrible. No real pain to speak of; just a feeling of having a flu for a couple of weeks--weak, achy, cranky--followed by slow but steady improvement over the next month. The second surgery was so much easier since I knew what to expect, I had better care (went to the Mayo Clinic, which was amazing), and because I had by then discovered this forum where I gathered all sorts of information that helped with the revoery. BTW: Cardiac rehab at the hospital was tremendously helpful both times; not least, it helps you overcome whatever reservations you have about what your body can and can't do in the first months of recovery, in the company of other cardiac patients.

 

[dick0236]

Hi Flor1. At 67 the medical choice would probably be a tissue valve in order to bypass warfarin. However, your profile says you have a pacemaker. That means you may end up on an anti-coagulant anyway. I would make sure yours surgeon knows all your history and go with his/her choice.

BTW, ACT is not difficult to manage. At 81 I find it no more difficult than when I was a young man.......maybe a little easier as my lifestyle is now more predictable.

 

[AZ Don]

FredW and others are spot on with their numbers. Most people feel much better after recovering from aortic valve surgery and generally have no restrictions. If you are concerned about blood thinners you can read that section of this forum and get good advice from people that have lived with it for years (the prior poster roughly 50 years).

I think the waiting and accompanying anxiety is the worst part, the surgery was not as bad as I expected. If I were you I would focus on finding a skilled surgeon you are comfortable with. You can read Dr reviews from patients here: https://www.healthgrades.com/, Dr rankings based on reviews from other Dr's here (for a small fee): http://www.castleconnolly.com/doctors/, information on hospitals here: http://health.usnews.com/best-hospitals

The surgeon your Dr. recommends may very well be good, but who knows if he is recommending him for his skill or because they are golf buddies. There is a lot in this situation out of your control, but you can choose the Dr, hospital, and the type of valve. Take comfort in the knowledge that you have a problem that can be fixed. Good luck.