Possible 3rd Valve Replacement

[Homeskillet]

Much to my shame it’s been several years since I’ve last posted. After being on here for several years life resumed & got veryyyy busy. But, no excuses, I should’ve made a concerted effort to remain active. Thus, I guess I’m now joining the countless others who come back home when new issues arise.

Not sure who’s still around but, briefly, I had 2 mitral valve replacements virtually back-to-back about 7.5 years ago now. 1st one was a tissue replacement that failed 1 year later—hence the 2nd OHS which was done with the On-X (mitral). This forum was absolutely phenomenal in those couple of years with all of the input & education. I can honestly say that I’ve probably learned more from this forum than I have, well, shall we just say, anywhere else (don’t get me started about the Coumadin Clinics!).

Well, now, my last echocardiogram (3 days ago) now shows that my Aortic Valve (native) has gone from mild regurgitation to severe regurgitation within a very short period (about 8 months)—which, obviously, is not good. My ejection fraction has also dropped from 45% (which in itself was not very good in the first place) to 35%-40%, almost certainly due to the aortic regurgitation worsening. (I’m a 57 yr. old male & in otherwise decent shape—except for the shortness of breath from low EF.)

My cardiologist told me that the aortic is typically not replaced as quickly as the mitral valve’s are, but that they would start watching it every 6 months. Regardless, it seems very apparent that a soon 3rd OHS is coming down the pike relatively soon. I assume that they’ll likely go with another On-X since I’m already on Coumadin anyway—likely raising my INR range due to 2 mechanical valves.

Honestly, I barely survived the last OHS & my wife and I have serious doubt that I would survive a 3rd surgery. We realize that no one on here can predict the future—nor is this a place that we seek professional input. Conversely, however, as my last surgeon told me about INR management post-surgery, “Those people probably know more about INR management than I do!” While we certainly understand that the same cannot be said regarding the outcome of a highly probable 3rd surgery—I would feel remiss if I didn’t seek out any non-professional input from those that have possibly (?) already experienced many of these procedures and/or post-operative complications.

Any thoughts would be greatly appreciated—to put it mildly. Thank you in advance.

 

[pellicle]

Hey

Hope it goes better this time

 

[tom in MO]

When I've had complications, I get true second and sometimes third opinions. For heart problems, several here have had good experiences with second opinions from one of the "factory" heart hospitals, such as Cleveland Clinic or Mayo, which provide pretty easy access to their team for second opinions based upon your existing medical records. One question I'd ask is how previous scar tissue would effect this third operation.

Good luck.

 

[3mm]

several here have had good experiences with second opinions from one of the "factory" heart hospitals, such as Cleveland Clinic or Mayo, which provide pretty easy access to their team for second opinions based upon your existing medical records.

I strongly support Tom's idea. I got a 2nd opinion from Mayo last August which was easy, fast (about 3 weeks), and very informative. I was so impressed that I then had Mayo do my surgery. However, the 2nd opinion from Mayo would have been very useful even if I had had my surgery with my original surgeon.

I barely survived the last OHS & my wife and I have serious doubt that I would survive a 3rd surgery

Discuss the problems from the last OHS with the surgical team for your next OHS. Perhaps some of those problems can be mitigated next time. Use your doubts as a tool to focus your energy on what you can control. This will give you and your wife more confidence, which will make you stronger. Many people have had a successful 3rd surgery!

Good luck!

 

[Gail in Ca]

Since I’ve had 3 surgeries I’d have to say each one is different, and the complications and recovery is also different. The top Stanford surgeon (now retired) did my 2nd, 3rd. He’s such a confident surgeon I just knew I’d be okay.
I think I was in worse shape going into my 2nd with CHF but I recovered well.
After endocarditis treatment for 6 wks I had my 3rd surgery. I would say my surgeon was concerned. He had a lot to replace and repair during that 3rd surgery, so more than you need.
My complication was a partially collapsed lung which resolved with no issues for me. I also had a chunk of my tongue sliced when I was intubated which then got thrush. No big deal to the nurses. I also had a pressure sore on my heel which took a long time to heal.
But, coming out of the actual surgery was good for me. I felt like I hadn’t had that long surgery! I hope you are able to feel the confidence of your surgeon and go into your third knowing you’ll be fine!

 

[Homeskillet]

Ok, got it! Excellent information from everyone.

I couldn’t agree more (& hadn’t even considered) a 2nd opinion from, say, Cleveland Clinic or Mayo Clinic, however, I would have absolutely no idea where to even start in order to get my VA (Tri-West) insurance to accommodate my request. And, I’m highly doubtful that they would do that anyway (?).

I realize that it’s not anyone’s responsibility other than mine to find out how to get the insurance issue resolved—just bouncing ideas off of those far more learned in this area than myself.

Thank you again!

 

[Homeskillet]

When I've had complications, I get true second and sometimes third opinions. For heart problems, several here have had good experiences with second opinions from one of the "factory" heart hospitals, such as Cleveland Clinic or Mayo, which provide pretty easy access to their team for second opinions based upon your existing medical records. One question I'd ask is how previous scar tissue would effect this third operation.

Good luck.

Scar tissue from the 1st OHS was the primary obstacle for my surgeon in the 2nd OHS. He said it was an unbelievable amount of scar tissue that he had to work through and that “I’d hate to be the surgeon doing a 3rd OHS on him” (based upon the voluminous scarring from the 1st surgery). Don’t really know if there’s anything that can be done about that (but spot-on observation).

 

[Gail in Ca]

My surgeon said it took 3 hours to cut through the scar tissue from my previous surgeries. I did fine, though.
I looked into 2nd opinions recently and they’re not cheap and not covered by insurance. This is if I didn’t actually meet the surgeon at an in person appointment, but just go through the online version for Cleveland clinic and Stanford.

 

[3mm]

2nd opinions recently and they’re not cheap and not covered by insurance.

I saw $1600ish USA price on the Cleveland Clinic website for a 2nd opinion. Since I was on Medicare last August, I never got a bill for my 2nd opinion at Mayo, but I think it was around $1500 USA. You need to talk with your insurance provider. In the USA, different providers will handle these issues differently.

 

[Croooser]

One advantage of the large well respected clinics is that they seem to have more experience with complex, challenging cases.

My experience with CC was that they were able to manage the insurance issues with only my insurance info. This was for a pretty straightforward Medicare advantage case. Couldn't hurt to ask. Their website has contact info.

 

[Chuck C]

Hi Homeskillet and welcome back to the forum.

my last echocardiogram (3 days ago) now shows that my Aortic Valve (native) has gone from mild regurgitation to severe regurgitation within a very short period (about 8 months)

That is concerning, especially in that you are symptomatic, as you have shared that you have shortness of breath.

My ejection fraction has also dropped from 45% (which in itself was not very good in the first place) to 35%-40%,

Also concerning.

My cardiologist told me that the aortic is typically not replaced as quickly as the mitral valve’s are, but that they would start watching it every 6 months.

I would strongly encourage you to get a second opinion.

The guidelines call for you to get valve surgery. See link below.

"Surgery is recommended for symptomatic patients with severe aortic regurgitation regardless of left ventricular (LV) function"

You have severe aortic regurgitation and are symptomatic. So, surgery would appear to be called for.

But also surgery is called for patients who have asymptomatic severe regurgitation if:

"b) resting left ventricular ejection fraction (LVEF) ≤ 50%;"

Even if you were asymptomatic, the guidelines call for surgery based on your ejection fraction.

https://emedicine.medscape.com/article/150490-guidelines

You plan to get a mechanical aortic valve, as you already have a mechanical mitral valve and are already on warfarin. This is wise.

However, in that you will be getting a mechanical valve, and the valve should last you the rest of your life, what is your cardiologist waiting for? What could possibly be gained by kicking the can down the road and waiting? What does he expect that he will see in 6 months that will cause him to refer you to surgery? With your EF currently at 35% to 40%, there are some serious potential bad outcomes for delaying surgery and arguably no positives by waiting, other than delaying the inevitable.

Not only is your EF below 50%, but it is well below 50%. You said yours is 35-40% and below 40% is considered heart failure. This will not get better without surgery and will only continue to drop. The lower it drops, the lower the chances that it will recover after valve surgery.

Sorry to be so red pill about this, but I again want to strongly encourage you to not delay and get a second opinion. Given that you plan to get a mechanical valve, I can't imagine what your current cardiologist is waiting for. At 57 years old you are a very young valve patient with a lot of life ahead of you. Waiting for your EF to drop into the 20s could very well be irreversible.

 

[Chuck C]

“I’d hate to be the surgeon doing a 3rd OHS on him” (based upon the voluminous scarring from the 1st surgery)

Your 3rd procedure will be more complicated, due to the scar tissue. This is why you will want to have a very skilled surgeon, at a world class clinic, when you get your third surgery.

There are members here who have had 3 surgeries and even 4. You can do this.

 

[Homeskillet]

Thank you so very much everyone—after reading these posts I did put in a new message to my cardio.

The cardiologist (NPR) I’m now seeing is surprisingly accessible and really seems to take his job seriously. He’s a good man.

Will tag back in as soon as I know something else. Man, I’ve really missed this forum.

 

[Gail in Ca]

A few members have had 3 surgeries, but when I started a 4th surgery thread, no one responded that had 4.

 

[Chuck C]

A few members have had 3 surgeries, but when I started a 4th surgery thread, no one responded that had 4.

They are out there, although 4 is pretty rare. A couple of years ago a new member joined who had actually had 5, IIRC. 2 or 3 of them were when he was just a baby/toddler. I wonder if having surgery that young presents less scar tissue later in life.

 

[MdaPA]

A few members have had 3 surgeries, but when I started a 4th surgery thread, no one responded that had 4.

When my wife, who has had 3, and I were in the office waiting room for a surgical consultation for her then 2nd surgery, we met a women who was getting a consultation for her 7th valve surgery. Don't recall any other details than that.

 

[Homeskillet]

They are out there, although 4 is pretty rare. A couple of years ago a new member joined who had actually had 5, IIRC. 2 or 3 of them were when he was just a baby/toddler. I wonder if having surgery that young presents less scar tissue later in life.

I thought I remembered the same person Chuck. If memory serves me right he was even looking at a 6th procedure—I *THINK* at CC (or possibly Mayo).

I’d love to know if chronic & acute stress (simultaneously) can cause valve failure. While many folks have heart valve issues from rheumatoid fever/sickness as a child—or something similar—I’ve never had any of that…neither do heart problems run in my family.

But, without being specific—the last 8 years have been mind-numbingly stressful (long story). Inquiring minds want to know!

 

[Homeskillet]

A few members have had 3 surgeries, but when I started a 4th surgery thread, no one responded that had 4.

My wife & I read your thread Gail. Without really knowing all of the details you do seem like a sharp & strong lady to us both.

I also saw MdaPA’s post about the lady having a 7th procedure—I guess it’s true that there’s virtually always a worse scenario for someone somewhere.

 

[Homeskillet]

Hi Homeskillet and welcome back to the forum.


That is concerning, especially in that you are symptomatic, as you have shared that you have shortness of breath.


Also concerning.


I would strongly encourage you to get a second opinion.

The guidelines call for you to get valve surgery. See link below.

"Surgery is recommended for symptomatic patients with severe aortic regurgitation regardless of left ventricular (LV) function"

You have severe aortic regurgitation and are symptomatic. So, surgery would appear to be called for.

But also surgery is called for patients who have asymptomatic severe regurgitation if:

"b) resting left ventricular ejection fraction (LVEF) ≤ 50%;"

Even if you were asymptomatic, the guidelines call for surgery based on your ejection fraction.

https://emedicine.medscape.com/article/150490-guidelines

You plan to get a mechanical aortic valve, as you already have a mechanical mitral valve and are already on warfarin. This is wise.

However, in that you will be getting a mechanical valve, and the valve should last you the rest of your life, what is your cardiologist waiting for? What could possibly be gained by kicking the can down the road and waiting? What does he expect that he will see in 6 months that will cause him to refer you to surgery? With your EF currently at 35% to 40%, there are some serious potential bad outcomes for delaying surgery and arguably no positives by waiting, other than delaying the inevitable.

Not only is your EF below 50%, but it is well below 50%. You said yours is 35-40% and below 40% is considered heart failure. This will not get better without surgery and will only continue to drop. The lower it drops, the lower the chances that it will recover after valve surgery.

Sorry to be so red pill about this, but I again want to strongly encourage you to not delay and get a second opinion. Given that you plan to get a mechanical valve, I can't imagine what your current cardiologist is waiting for. At 57 years old you are a very young valve patient with a lot of life ahead of you. Waiting for your EF to drop into the 20s could very well be irreversible.

Chuck—Didn’t want to seem as if I was ignoring this (nor any other) reply.

This is a *VERY* informative post, precisely the kind of data we need to hear—& we deeply appreciate your time & ‘red-pill’. I’m a red-pill kinda’ feller’ any way! Indeed, this post caused us both to spring into action immediately.

*Side-note: It was actually on this very forum that I first saw an advertisement about the On-X valve just before my 2nd OHS—which is what I told my surgeon I wanted & turned out to be a great fit for me personally. Thus, I view this forum as a tremendous source of information & I tell every-single heart valve patient I meet about it.

 

[Chuck C]

I’d love to know if chronic & acute stress (simultaneously) can cause valve failure. While many folks have heart valve issues from rheumatoid fever/sickness as a child—or something similar—I’ve never had any of that…neither do heart problems run in my family.

You should probably get your Lp(a) tested. It's a simple blood test that is often done with a cholesterol panel, such as the CardioIQ advanced lipid panel at Quest Diagnostics. It can also be ordered as a stand alone test at any major lab. It runs about $50.

Elevated Lp(a) is causal for both heart disease and valve disease. Often times when a patient presents with valve disease who is not BAV, who has not had rheumatic fever or endocarditis, it is discovered that the patient has elevated Lp(a). However, this is often over looked by cardiologists and despite it's strong association with valve disease, valve patients are often never tested for Lp(a). See link below for info on the association.

"High Lp(a) may also promote faster progression of aortic stenosis, culminating in earlier aortic valve replacement or death.
In the primary prevention setting, elevated Lp(a) is associated with several ASCVD outcomes, as well as aortic valve stenosis and cardiovascular and all-cause mortality. "

https://www.acc.org/Latest-in-Cardi...y also,cardiovascular and all-cause mortality.

Also, you indicated that your porcine valve failed after about a year. In a study published this year, elevated Lp(a) was found to be strongly associated with early development of SVD for tissue valve patients. See link below:

Role of lipoprotein(a) concentrations in bioprosthetic aortic valve degeneration

https://heart.bmj.com/content/110/4/299


If your Lp(a) is normal, you will never need to get it tested again. Unlike LDL cholesterol, Lp(a) remains almost exactly the same throughout a patient's life. There is currently one treatment which lowers it 15% to 45% for most patients, but there is a treatment which lowers it about 80% called antisense which is well into its phase 3 trial and expected to get FDA approval next year.