Surgery Postponement Surprise

[S Walker]

Hello again,
Just a quick update from me to all those who were kind enough to welcome me earlier (I am the person with severely leaky mitral and tricuspid valves).

The result of my meeting with the surgeon is that he WANTS TO DELAY surgery until I am either more symptomatic (severe shortness of breath, swelling in legs or abdomen, extreme fatique) or until there are distinct changes to the heart structure before operating. My age (59), the fact that I am not experiencing bad symptoms, and the problem that a reoperation, potentially necessary within 10-15 years, would be difficult and statistically doesn't have great outcomes (it would be my fourth OH surgery), were his main reasons. If I can last out five more years, so his argument goes, then I have a chance of outlasting the valve replacement or dying of something else entirely!

No time line was given - he thought I might last 'quite a long time' before needing the surgery and while this contradicts the cardiologists' opinions who said they wanted to operate while I was in good form and before the heart started to deteriorate, his arguments make sense to me. In any case, it seems it won't be happening next year after all!

This came as quite a shock - my husband and I were mentally prepared for a year of hard slog recovering and had really written off the whole year. Now, everything has changed!

So there you go?you certainly never know what life is going to throw at you do you? I still have to majorly restrict fluids, exercise, and take the meds, but that's all easy stuff.

I will check in from time to time to see how everyone is doing?again, thank you so much for your earlier support.
Suzanne

 

[abbanabba]

Are you happy to have it delayed for those reasons, or is it worth looking for a second opinion? I guess at your age (which isn't that old btw!) you may be happy to wait and see how things go.

Personally, after having waited 5 years for a PVR, I feel I have lost a lot of important years due to the restrictions I have had due to symptoms (the increased risk of reoperation was also cited as the reason for delay)... however I am at an age where I want to be planning for my future - which is kind of hard to do when you have no energy or money

If you are still relatively asymptomatic, and your heart is still functioning OK, then another few years of waiting may not be such an issue. Still, I'm inclined to agree with the cardiologists that it's better to get it done before things go downhill... and who knows, maybe 10-15 years from now technology will have found a way to reduce the risks of reoperating if need be.

But that's just my opinion based on my own situation. At the end of the day you have to do what feels best for you based on your own circumstances and the information you have.

Either way, all the best.


A : )

 

[Jkm7]

Oh my..... what an interesting development for you.
If you have full trust in this surgeon's judgement, then, that is that as they say.
Perhaps you might wish another surgeon's opinion.
I don't know exactly how I'd feel about it.

Certainly my very best wishes to you.

 

[netmiff]

Let me first say that I am not a medical professional, and this is just my opinion. Second, that I recovered in way less than a year - more like 3 months I was back to "normal".

I certainly think if it was me, I would want a second opinion. Most cardiologists prefer to leave it later rather than sooner (when heart has been damaged) and most surgeons prefer sooner rather than later, preventing heart damage. (this is gathered from reading here and other places)

Why do they think you will need a re-do within 10-15 year? is there any way round that? Sounds like you are talking about tissue valves, not mechanical. Mechanical should last forever.

I was 52 at the time of my aortic valve replacement, and do not expect to have to do it again, even if I live to 190!

 

[Eva]

Suzanne,

I am 57 and my symptoms had been worsening over many years mainly the last five years. if you are managing OK, I agree with your surgeon and would wait...especially that tissue valves last longer in people over 60 if you want to avoid coumadin. Despite my extremely bad symptoms I jokinly asked my surgeon if I could have avoid surgery and waited three more years, but he was smarter and told me I could go either way. But I chose mechanical as I do not wish to be reopened at 77 if tissue valve lasted me 20 years , and you do not either want this. When I mentioned this fear of being reopened, my surgeon said that within five years they might be able to replace valves without opening the chest and medicine is advancing quickly.

This is my humble opinion. But, you definitely may want to check with others, if you are in any doubt of your surgeon's expertise and knowledge or judgement.

Good luck

 

[neil]

hi........yea it has certainly put you on the spot, i can see both sides of the coin,maybe get another opinion? i had tissue valve and it took me over 6 months to get back to normal,but everbody,has different recovery rates,good luck anyway am sure you will be fine,..........neil

 

[skeptic49]

Sounds like your surgeon is being conservative, which would tend to reassure me somewhat, especially if I had full confidence in that particular surgeon. I would expect a cardio to be more conservative than a surgeon in terms of recommending surgery. You can always get another opinion from a different surgeon.

Good luck,

JIm

 

[Ross]

You could have the surgery, go mechanical and never worry about surgery again, or at least, 98% chance or so of never having another.

 

[kfay]

You could have the surgery, go mechanical and never worry about surgery again, or at least, 98% chance or so of never having another.

You guys are missing the point, one of the valves involved here is the tricuspid valve. Mechanical valves in this position are usually NOT recommended. Your chance of throwing a clot with a mechanical here are much higher. I would love to not have to have anymore surgeries. I worry about my chances of survival with surgery #3, #4 and possibly #5, if I live that long. I also don't want to stroke out either. It isn't that simple of a decision for those of us with right sided valve problems.

 

[S Walker]

I am SO interested to see all your opinions - thank you for taking the time to comment.

Kfay pinpoints part of the complication in my case - the tricuspid valve is also severely leaky, and while they will try to repair it, if they have to replace it the preferred way to go is NOT mechanical and therein lies the rub. My history of very early surgery for an ASD repair (I believe they still call it 'pioneering' - way back in 1962) and subsequent pericardectomy in 1973 were both fairly 'crudely' performed by today's standards. The methods used in those days they believe to be contributory factors for my current situation.

If it was only the mitral that was the problem, then I would do what Ross suggests - go for the mechanical and be done with it it. It's the darn tricuspid that messes up an otherwise straightforward solution. The pericardectomy, again a very early one, has left a lot of adhesions and other scar tissue which they will have to hack through. When I looked at a lot of the statistics I believe I am quite fortunate to have lasted as long as I have (perhaps a good thing not to know sometimes?!) without problems.

So I will see the cardiologists in January and get their take on things and then perhaps seek another opinion as many of you suggest. And I really agree with Jim when he points to the surgeon's conservative approach - it's not as if I am very symptomatic or my life is impacted by it (other than in a positive way because of the all exercise I have to take!). I will be sure to let you all know what happens next.

Again, thank SO very much for taking the time to write. All the best to all of you…
Suzanne