Another surgery in my future?

[Thriell]

I had my aortic & mitral valves replaced with pig tissue valves in August of 2005. For the last several months I've had the same old problem of running out of breath at the drop of a hat - any hat - so the other day I got in for an echocardiogram.

The cardiologist told me that my mitral valve is regurgitating. My first thought can't be expressed in this forum. My second thought was to ask what could be done about it. He told me that "you're only allowed 2 heart surgeries in a lifetime" and that he wants to try controlling it with medication until I'm about 60 years old... That's still 17 years away!

Three questions for you good people:
1) who made up this "rule" about only having 2 heart surgeries in a lifetime? I understand about wanting to minimize scar tissue on the heart, but this guy made it sound like it was a law carved in stone somewhere.

2) If the problem is the valve not closing properly, how does he think taking a pill is going to make the valve seat better?

3) isn't 22 months rather a short time for a valve to go before it repeats the trick that got the original valve replaced? Do they come with any sort of warranty? I will point out here that in December I had one wicked staph infection that just almost did me in, but the doc was very careful about checking my valves before letting me out of the hospital.

 

[hensylee]

Welcome - I think the members might dispute your doctor, but we will see when they stop in here. I didn't have valve replacement myself, but I believe several members have had more than two surgeries. They'll be along soon.

 

[geebee]

It is not often known why some valves fail faster than others. Certainly the infection in December could have caused problems the doctor might not have seen at the time. However, in general, 22 months is a very short time.

I have had 3 heart surgeries so I guess the stone wasn't cast in my case and many people have more. Yes, it would be best to have less surgeries but we all do what is needed to survive.

Medication can help with some symptoms but it cannot fix the regurge. It might be time to consult a surgeon to get another opinion.

 

[Nancy]

My husband had three heart valve surgeries, and he is not alone, plus there are many members here who have had more than that. So your doctor is wrong.

The first thing that comes to mind is just how bad is your valve, and do you have copies of your recent tests. If the regurgitation is in the trace or mild category then people live for years without any need for surgery. If it is moderate, many people can live for a while with that and their doctors keep a careful eye on it. If it is anything worse than that, then surgery may be indicated.

Surgery is done based on test results, and also based on the patient's symptoms.

So the first thing you have to do is to find out just where you stand test-wise.

You are entitled to copies of your test results.

 

[Susan BAV]

Welcome to the site; but I'm really sorry to hear about such a valve problem after only 22 months. Can you or your doctors compare the before staph and after staph test results, such as echos, and see if that infection might have been a major exacerbating factor? Do you know why your original valves needed replaced two years ago? You probably know that some valves begin to fail because they are congenitally malformed, some become diseased because of infections, some are damaged from cancer radiation, and there are other causes, occasionally including a combination of causes.

As has been mentioned, there are members here who have had multiple open heart surgeries. I've had two heart surgeries, although I don't know if my first one was technically OPEN heart surgery.

Hopefully, as Nancy mentioned, the regurg is not bad. I don't know about the med question because I thought some meds could reduce the load on the heart, but I may be wrong. I believe Gina is right in that meds can't fix or undo or correct regurg though.

Others will hopefully post also with more information. Take care and post again.

 

[Debbrn]

Dear Thriell,

I have had 3 heart surgeries so far. 1) age 6 weeks-BT shunt not technically OHS. 2)Age 6 years-TOF repair including removing my stenotic pulmonary valve and placing a patch that would keep the pulmonary annulas open. I lived 16 years with out a pulmonary valve. 3)Age 25-Pulmonary valve placement with cadavar valve and tricuspid annulplasty.

My next pulmonary valve replacement will be in the next 1-5 years in my opinion. I may also need another tricuspid annulplasty.

I know many people that have had a minimum of 3 heart surgeries.

Debbie

 

[Thriell]

Do you know why your original valves needed replaced two years ago? You probably know that some valves begin to fail because they are congenitally malformed, some become diseased because of infections, some are damaged from cancer radiation, and there are other causes, occasionally including a combination of causes.

It is my theory (and a cardiologist said it was at least possible) that the original problem was my rheumatoid arthritis (had it for 10 years). Arthritis likes to attack the connective tissue in the joints, and heart valves are made of pretty much the same tissue.

Hopefully, as Nancy mentioned, the regurg is not bad.

The regrug problem before the surgery was described as "moderate-severe". The cardiologist I saw the other day was not the one I saw 2 years ago, and this guy didn't seem to me to be as forthcomming with information. Frankly, he seemed, more than anything else, in a hurry to see as many patients as possible in a single day. I will more than likely be trying to see a different cardiologist. Until then, all I can say about the severity of the regurg is that it's not as bad as two years ago (when I had three valves doing it instead of one). Back then it got to the point where I couldn't walk across the house without sitting down to rest. Now, I can walk next door and back (about 200 yards each way) before I'm totally out of breath.

The heck of it is, in this condition I can't get any exercise, so my weight is going up, making the problem worse.

At 43 years old, I'm too young for arthritis and heart trouble!!!

 

[Bradley White]

Your doctor is simply wrong about the fact that you are "only allowed 2 OHS's in your lifetime." This is an old saying in cardiac surgery, but it is outdated. Although no one wants to have 3 open heart surgeries in their lifetime it is certainly not undoable. Third surgeries are becoming more and more common and are often quite successful. I've had 2 and I'm 24. I am definitely facing a third in the next 20 years. My surgeon (from the Mayo Clinic) maid no mention of the third surgery being that big of a problem. If it was he would not have let me get a tissue valve the second time around.

Brad

 

[Kathleen]

Having had 4 surgeries I would most definately get another opinion. The basic information he gave you was incorrect so how could you trust him to be correct on the diagnosis.
Kathleen

 

[Laurz]

Feeling for you

Feeling for you

Thriell, so sorry to hear about the recent diagnosis. I also had surgery 2 years ago. At which time they repaired my mitral valve. Well I began having some pretty obvious symptoms a few weeks ago and eventually got into my cardiologist. After listening he said I have a very very loud heart murmur. Oh no!!!!! those are the same words they used two years ago. Had an echo done immediately and yup it should be a loud murmur as I have severe regurg-------AGAIN. Next week is the TEE to determine the extent of the damage and then we will go from there. However his preliminary guess is that I will be having my second surgery very soon. Possibly before the week is out. I understand that most surgeons prefer to work on a heart that is in good condition rather then poor condition. Makes their work easier. So as a few others have suggested it may be advantageous to receive a second opinion. Hope all works out well for you.

 

[Thriell]

Having had 4 surgeries I would most definately get another opinion. The basic information he gave you was incorrect so how could you trust him to be correct on the diagnosis.
Kathleen

I am confident that he at least got the diagnosis correct because 1) it feels the same as it did the last time I had a regurg problem and 2) I was watching the screen when the technition was doing the doppler scan and I remembered what to look for from a couple of years ago.

I get the impression that, while he is competent enough to get the diagnosis correct, he would rather I see him for the next 20 years instead of handing me off to a surgeon and risking my not returning to his cash drawer.

 

[Lisa in Katy]

It is true that multiple surgeries increase your chances of risks related to the build-up of scar tissue, so maybe your doctor was going with the current thinking, as opposed to a "set in stone law". That is why many surgeons recommend mechanical valves for those of us who had surgery at a younger age. Historically, tissue valves last an average of 10 years and mechanical valves last an average of 30 years. Of course, both of these numbers are changing with better technology and open heart surgery is much less non-invasive so the rules are changing. If I were you, I would contact my surgeon, or another surgeon, to get his opinion about repeat surgeries. They are the experts on that one.

Also, and I'm just wondering here so ignore me if you think this is ridiculous, if your original assumption was correct that the rheumatoid arthritis caused the valve problems (and I would assume that's possible since rheumatic fever caused mine), then wouldn't it make more sense to use mechanical valves? Wouldn't the new tissue valves be at the same risk as your old tissue valves?

 

[Thriell]

Also, and I'm just wondering here so ignore me if you think this is ridiculous, if your original assumption was correct that the rheumatoid arthritis caused the valve problems (and I would assume that's possible since rheumatic fever caused mine), then wouldn't it make more sense to use mechanical valves? Wouldn't the new tissue valves be at the same risk as your old tissue valves?

The surgeon explained his choice of valve type by saying that with my over-active immune system, a mechanical valve would be more likely to get rejected. I guess it was the lesser of two evils.

 

[RCB]

Questions

Questions

The surgeon explained his choice of valve type by saying that with my over-active immune system, a mechanical valve would be more likely to get rejected. I guess it was the lesser of two evils.

I have never heard of the body's autoimmune system rejecting a mech. valve.
It is extremely rarely even in a tissue valve. I would be very interested in your doctor's citations for this claim.

 

[Lisa in Katy]

I think that you need a new surgeon and a new cardiologist, if this is truly what they told you, and not just a misunderstanding. Immunologic rejection is a response to foreign proteins found in transplanted tissues. It does not occur with mechanical valves, because these don't have proteins. It generally doesn't occur with tissue valves either, because they are specially treated. It is extremely rare with homografts, as well.

 

[Thriell]

I have never heard of the body's autoimmune system rejecting a mech. valve.
It is extremely rarely even in a tissue valve. I would be very interested in your doctor's citations for this claim.

I may have chosen the wrong word when I said "rejecting". It's been a couple of years and I don't remember the conversation verbatim at this point, but perhaps he was referring to blood clots forming on the mechanical valves and expressing the opinion that this would be less likely with tissue valves.

I do know that he told me that, had I only needed one valve instead of two, I probably could have gotten away without taking the blood thinners because "these new valves" (his words) didn't have nearly as much problem with clotting.

 

[geebee]

I may have chosen the wrong word when I said "rejecting". It's been a couple of years and I don't remember the conversation verbatim at this point, but perhaps he was referring to blood clots forming on the mechanical valves and expressing the opinion that this would be less likely with tissue valves.

I do know that he told me that, had I only needed one valve instead of two, I probably could have gotten away without taking the blood thinners because "these new valves" (his words) didn't have nearly as much problem with clotting.

I am really confused now. Why are you on coumadin for tissue valves? Do you have an underlying problem such as a-fib?

 

[tobagotwo]

Twenty-two months is extremely short, ever for a forty-one-year-old.

I think you need to find physicians in some other part of Arkansas. There is no protocol I've read about for warfarin-level or Plavix-level ACT for more than three months (six, if part of the aorta is replaced) for tissue valves after OHS, double or triple valve replacements included.

Mechanical valves are not rejected by the autoimmune system. Almost paradoxically, neither are porcine or bovine valves. Sometimes, human donor valves (homografts) can be, however.

There is no such medical rule as the two-OHS-per-customer law. Poppycock! A show of hands of those on this site of those who'd not be here now if they were only allowed two OHS's apiece would be impressive.

Some key questions would seem to be...

How bad is the regurgitation? It seems severe, based on the level of SOB you describe.

Why is the valve failing? Possibilities include malformation of the surrounding tissue, weakened (myxomatous) tissue, partial detachment of the valve, or a failure in the valve's actual structure.

What caused your original valves to fail? That might shed some light on what is happening now.

I know you don't want to hear this, but I'd be more afraid of not having it fixed, given your description of the symptoms. You need a cardiologist who knows more about heart valves than the people you're dealing with.

Best wishes,

 

[Thriell]

I am really confused now. Why are you on coumadin for tissue valves? Do you have an underlying problem such as a-fib?

Believe me, I've had more than one heated discussion with more than one doctor about that very subject.

When Dr. Watkins first did the surgery, he told me very plainly that I'd be on blood thinners for six months. Six months later, I had to beg and plead to get a cardiologist to call him and verify that statement because I had been in the hospital without coumadin and I didn't want to go back on it. When I finally DID convince someone to call Dr. Watkins, he changed his story to say that if I had only had ONE valve replaced, I wouldn't need the blood thinners, but since it was, in fact, two valves, then he felt I should be on the blood thinners as a precautionary measure.

I didn't agree then, and I don't agree now, but I got tired of fighting about it with every one I know.

 

[Ross]

Are you seeing Doctors or Doctor wannabes? You need to seriously find some REAL Doctors.