Help surgery or no surgery

[lucky400]

Hi, I'm new to this forum and have been diagnosed with valvular disease. My latest echo is from University of Pa and was done 3/7/05. I had a previous one done in February at a suburban hospital but the cardiologist at Penn wasn't happy with that one (no valve area, etc.) The first card. at the small hospital said he wanted to wait till I got sicker. I'm 55 years old and very active. I work out at least 5 days a week, cardio everyday and weight room 3 days a week. I knew I had a very loud murmur since my 20s. I asked my primary care doctor for a new echo. I noticed that I was having trouble keeping up my usual workout due to fatigue and experiencing heavy pressure on the chest during the first 10 minutes of my workout. Also climbing stairs was becoming difficult - I was having the pressure on my chest and am short of breath by the time I get to the top of the steps.

The suburban hospital echo said my aortic stenosis had worsened since the last one 5 years ago. So I went to the first cardiologist who told me I needed to be sicker but that surgery was definitely inevitiable. Workouts that could only last 15 minutes, etc. I wondered why I would want to have my body deteriorate and have a harder time exercising before I would get things fixed. I thought the better condition I am in the easier the recovery.

So I went to Penn. My second echo came back with a lot more detail. My ejection fraction is good - 65%. "The aortic valve is moderately thickened and mildly calcified. There is moderate to severe aortic stenosis with a valve area of 1.01 cm^2 (Peak grad = 45mmHg, Mean Grad=26mmHg, LVOT dia= 1.8cm, LVOT FVI = 30cm, AoFVI =75cm). There is moderately decreased valve excursion during systole."

The mitral valve is "mildly thickened. There is moderate mitral regurgitation with multiple jets. The valve has mild myxomatour degeneration."

RA: Normal
RV: Normal
PV/PA: Normal

"The tricuspid valve is normal. There is moderate to severe tricupsid regurgitation which is centrall directed. There is moderate pulmonary hypertension (PASP=50mmHg. RAP=14 mmHg)."

The aortic root is calcifed.

The Doc at Penn ordered at catheterization which I am having 3/21. He ordered a dual and they are taking xrays as well.

The Penn Doc orginally said probably the sooner the surgery the better. However yesterday I spoke with him and he said he consulted with some other docs at Penn and they think, depending on the cath, that he should give me medication for my symptoms and see how I do.

As of now I am not in the weight room any more - he told me to stop. I can only do the tread mill at a slow speed and no incline.

I am concerned about the pulmonary hypertension, I know its the secondary kind, thank God. I feel like how long do I want to wait to have this done if it's inevitable.

I have not seen a surgeon. I do not know if they can fix the mitral and just replace the aortic. I understand the tricuspid regurge. should go away after the other valves are fixed and that should hold true for the pulmonary hypertension.

I don't want surgery but on the other hand I want a good quality of life and don't want to feel like a time bomb ready to go off.

I was hoping to find out from all of you, who are so very knowledgeable, if it is normal to wait a long time before surgery. How bad do you have to get before they do it?

Thanks for your help. I'm so glad I found this board.

Barb

 

[Ross]

Hi Barb and welcome to the forums.

Too me, it sounds like your a go for surgery right now! Best thing to do is get the cath and see what the results have to say. GET COPIES!!!! If they continue to buck and want to treat, take those copies and go get a second opinion. Cardiologists love to wait for damage to set in, Surgeons would rather get to you before that happens.

From what your describing though, I do not know why they are dragging their feet.

 

[Barry]

I waited too long to get my mitral valve replaced, so I've got some enlargement of and damage to my heart that wouldn't have happened had I gone under the knife sooner. I think that's the trade-off - you want to postpone surgery as long as makes sense, but you don't want to pay the price in permanent damage. Another thing to keep in mind is that the older you get the harder major surgery is on you.

I'm a rather exaggerated example, BTW...

In the mid 1970's I was diagnosed with severe mitral valve prolapse, but other than a very loud murmer I was asymptomatic - got found out in a routine physical. Doc told me that the valves they had available then sucked and that docs were going to be wanting to be cutting on me, so stay away from docs and wait as long as possible 'til they develop some decent valves. Warned me of what symptoms to look out for.

Fast forward a bit over 30 years, I'm reading in bed, having shortness of breath, feel like I'm drowning on dry land, find that it tends to be better if I sit up a bit, and remember that's one of the things I'd been told 30 years ago to look out for. So I go to the ER, tell them that I've got severe mitral valve prolapse, I'm going into congestive heart failure and I need to get my mitral valve replaced. Several hours and zillions of tests later, a doc comes up to me and says they could have saved a lot of time and tests had they listened to me: That I've got severe mitral valve prolapse, I'm going into congestive heart failure, and they need to replace the valve.

I dunno when they developed the good valves they have now (I've got a St. Judes). That's when I should have gone under the knife. 30 years ago all they had were the ball-in-cage valves.

 

[rlbaird]

Hi Barb,
I am also fairly new to this website but I agree with Ross. It sounds like you are either ready for surgery or ready for some future problems. I knew I had a heart murmur since I was at least 3 and never had any echo grams until in 2001. I didn't think it was a big deal since every doctor I went to as a physician asked me if I knew I had a murmur. Nothing else was suggested or seemed like a big concern. I thank God that my last doctor requested a echogram and found some major problems. In Greensburg, PA they do heart surgery's but he recommended I go to Pittsburgh and see a certain doctor. Because of his prfoessional care, I am now with a St Judes aortic valve. The catherization showed some deposit on the valve and it was a huge calcium deposit. The next day I had the valve replacement and removal of the calcium. I had no time to do any research or second opinions, I consider it a second chance at life and I didn't have any of the symptoms you do. I actually went in for a sore throat!!!

Just sit back and look at what you used to do--work out 5 days and now he doesn't want you do do much. Why??? The dramatic change could take a toll on your system as well as waiting to see if and when something might happen. Surgery sounds better than waiting for the time bomb to explode and possibly do other damage. I hope you find the right answer after the catherization.

 

[Georgia]

I'm another one who waited too long - my mitral valve problems caused damage to my tricuspid. I was fortunate in that my heart function has returned to normal (it took a year) and the lveft ventricle is no longer enlarged. But a much earlier surgery would have avoided the multiple problems and I might have had the luxury of a mv repair rather than mechanical.

By all means push this. Why they want you to corrupt your quality of life to "wait a while" is beyond me. Maybe someone - like the surgeon - could explain their thinking.

 

[Mb]

My two cents:

The tricuspid reguritation could be masking the mitral or aortic regurg. With the PH, I would opt for the surgery NOW. Servere tricuspid regurgitation and pulmonary hypertension indicate that your heart disease is more advanced. Your next problem could be chronic atrial fibrillation. Have the test, follow their advice. But, if it were me I would NOT delay the surgery.
Marybeth

 

[Barry]

...Your next problem could be chronic atrial fibrillation...

I've got that. You don't want it. Thankfully I'm seldom aware of it (it feels very very creepy to me, although folks more commonly experience it as anxiety), but it increases the likelihood of throwing clots and getting a stroke.

 

[tobagotwo]

Barb,

This type of news can be is no fun. You look back and say "I did all the right things. What was the point?" Well, you're doing better now than you would have been because of those things, and your recovery will probably be improved because of it as well. It wasn't wasted. Your base body condition really doesn't deteriorate that fast.

You are strongly symptomatic, which is a major trigger for surgery. Your body is speaking to you.

The mention of myxomatous degeneration in your mitral valve is concerning. I assume they're planning to replace both the aortic and mitral valves at the same time? You don't want to do one now, the other in three years.

I realize your EF of 65% sounds good, but is actually at the very top end of normal. As the heart muscle enlarges due to the strain of trying to supply the body's oxygen needs, the EF can often go well above normal before it begins to fall in the slide toward CHF. My EF was similar to yours before surgery. If it makes you feel any better, I had thought that it was a good sign too, at the time.

The 1.1 cm² reading on the valve area may be off, and the cath may show that. I suspect your valve opening is a little smaller with your pressures and your symptoms, or the valve has become more inflexible, due to the calcification, which also affects pressure and flow.

No one wants to have OHS, but you don't want to live the way you are now, and you don't want to live with permanent heart damage after surgery from waiting too long, either.

I believe you are a major factor in the doctors' decision whether to operate soon, and that they are looking to you for cues as to your willingness. If you push them at all, I bet they'll go for it.

You must do what you feel is right for yourself. If it were me, I'd push.

Best wishes,

 

[ALCapshaw2]

Your doc advised you to lay off the Weight Training because the additional PRESSURES that build up in your heart could result in SUDDEN DEATH.

Cardioligists are notorious for wanting to postpone surgery. My cardiologist was hoping to get another 3 to 5 years after diagnosing my Aortic Valve Stenosis and MILD Mitral valve issues. ONE year later, I was quite symptomatic and by the time I got to surgery, was having chest pains.

Bottom Line 1: I believe I got to surgery JUST IN TIME.

Bottom Line 2: My MILD Mitral Valve issues are now deteriorating and will likely require a Mitral Valve Replacement 3 to 4 years after my Aortic Valve was replaced. This will be OHS #3. I had bypass surgery 3 years before the AVR. Talk with a SURGEON about having BOTH valves replaced at the same time.

What to do? ONE of the Flags for Surgery is when the Aortic Valve Area is <= 0.8 cm sq. Chamber enlargement, Mitral Valve issues, and 'stiffening' are additonal flags that benefit from having surgery SOONER rather than LATER.

IMHO, SURGEONS have a better perspective on WHEN to have surgery. NOW is the time to be interviewing surgeons, discussing valve types, etc. Ask you cardiologist to refer you to a surgeon ASAP. If you know what type of valve / procedure you are interested in, ask / look for a surgeon who has LOTS of EXPERIENCE with that / those option(s). Survival rates for first time surgery in patients under age 60 is EXTREMELY GOOD (98-99%). If you want a real shock, ask about the survival rates if you DO NOTHING!

Check out the Washington Post Article on "Sooner is Better" in the Heart Talk Forum.

Waiting for (more) SYMPTOMS can be "dangerous to your health".

'AL Capshaw'

 

[lucky400]

Thank you

Thank you

Hi Folks,

I can't thank you enough for all your thoughts and wisdom. I am going to wait until Monday when I have the catheterization and see what those results are. I hope I get information the day of the cath and don't have to wait a month to find out results.

I agree and tend to believe the sooner the better and depending upon the cath results (whether things are actually better than the echo or worse than the echo or possibly the same as the echo) I will push for a referral to see a surgeon.

I have lots of questions such as what type of valve for my age, will both be replaced or can they repair the mitral valve, am I a candidate for the minimally invasive type of surgery?

I really don't want my life style to deteriorate for an extensive period of time.

Thanks again for all your advice.

Barb

 

[strawberry]

Hey Barb,

I was wondering what suburban hospital you went to first? If you don't want to post it maybe you could PM it. Just curious. I'm from Chester County.

 

[geebee]

Barb,

You are already making changes in your life due to your heart problems. You will continue to do so until your life is merely a shadow of what it was.

Definitely see what the doctors have to say after the cath and then go to see a surgeon regardless of what they say. Although surgeons are more willing to operate earlier than most cardios, it doesn't mean they operate when it is not necessary.

The information you posted seems to indicate you need surgery. The fact that you can no longer do things you like and want only confirms the need for surgery.

Let us know how the cath goes and best of luck.

 

[Ross]

I really don't want my life style to deteriorate for an extensive period of time. Barb

Barb you cannot afford to think like that. Without being fixed, you won't have to worry about a lifestyle at all, because you won't be alive to worry about it!

Despite everything we've all been through, and some of us have been through literal hell, it is only a minor inconvenience in the stream of things. You have to look at the big picture. One year of recovery out of your life isn't too high a price to pay for having life is it?

 

[Nancy]

My husband has PH. All of his cardiologists were absolutely convinced that it was secondary, and that he would probably not qualify for treatment . He came to a point where his became severe, and still no treatment. He was fading away and came close to death.

I got him to a PH specialist just in time. He was hospitalized for a month and had every test known to man (I think). It was determined that his PH was not secondary, but primary and he is now on Tracleer and has been for over two years. What a difference that drug made!

Yours may be secondary, but you will never know exactly what you have until you have a workup by a specialist in PH. It is too rare a disease for most doctors to know how to treat it (about 2 in a million), and most have never seen another case of it. Cardiologists and pulmonologists know about the disease, but it is NOT the same as a specialist.

In addition, when you have your surgery, because you have PH, you will have to have a VERY knowledgeable surgeon and anesthesiologist working on you. They will have to understand thoroughly about PH, and will have to be in contact with your PH specialist.

Do you know about this website?

http://www.phassociation.org/Message_Boards/main.asp?board=1

 

[Marty]

Barb, Read "SOONER IS BETTER". Article from Washington Post posted by Al.

 

[lucky400]

Hi Folks,

I just had my catheterization and received my report. The cath found my aortic stenois to be better than than the echo said. The valve area in the cath is 1.7 and in the echo it is 1.0. The doctor who performed the cath said it is probably somewhere in between the 2 readings. They also feel that I may have a bicuspid aortic valve. Also they found an enlarged ascending aorta and arch. It measured 3.9 which is not terrible yet. However I am concerned because I am a very small person. I am 4 feet 11 inches and my artery size may be small to begin with. I have mitral valve regurgitation but it is not serious at 1+. I had an ejection fraction of 74%. In my last echo it said I had pulmonary hypertension of 50 and the catheterization says 39. I have not been exercising for the last 2 weeks. Could that be why the pressure has gone down? I'm pleased the pressure has gone down.

My echo found severe tricuspid valve regurgitation but the doctor that did the cath said they don't look at that.

I see my cardiologist next week and probably feel he will suggest I wait and see and get echos, etc. every 6 months. I really want to be able to go about my life normally, exercising as much as I want and getting back to the weight room, etc. I have also decided to send the films from my echo and catheterization to the Cleveland Clinic for a second opinion. I am very nervous about the ascending aortic aneurysm. Anyone have any thoughts on this?

Thanks for your help.

Barb

 

[tobagotwo]

Barb,

I'm still surprised that they sent you home. I really don't want to disquiet you, but your EF of 74% is not good. An EF that high indicates some big changes in your heart. 65% is the top of normal. Your heart has to have enlarged quite significantly to have produced this.

Like any muscle, your heart enlarges when it is used harder. It has to be under severe strain to have overdeveloped to that extent. At first, it helps to keep the bloodflow more reliable, as you might expect. Unfortunately, once it develops to a certain size, it starts to get in its own way. Then your high EF will begin to fall fairly rapidly, in a cycle that starts congestive heart failure.

A side effect of your current enlargement is the regurgitation (leakage, insufficiency) in the other valves, as the tissue they are anchored in has warped with growth, causing them to misalign and close incompletely. A byproduct of those leaks is the pulmonary aspect of your issues, as the pump system is not working properly from either side of the lungs. And, of course, even more "bulking up" of the heart muscle, as the cycle continues.

A lady I know who was confined to a wheelchair from severe, "terminal" COPD finally had valve surgery. She is now walking to get her mail, climbing stairs without stopping. She says that her pulmonary specialist told her that for all practical purposes, her COPD is no longer affecting her. (Unfortunately, not all COPD responds so wonderfully to valve surgery - it looks like the valves were causitive in her case.)

I'm not surprised to hear that the pulmonary problem showed up as being less in the catheterization, as standard echoes are notorious for overestimating pulmonary pressures. There's still an issue there, though.

The valve opening size is certainly not the only parameter that should be considered for surgery. You have multiple valves leaking, pulmonary issues, enlargement, you're symptomatic...

As far as enlargement, be aware that they should be measuring enlargement from your starting point, not just by looking at chart averages and saying "that's not too far over normal." This happens more frequently than you would expect. Normal is what was normal for you. Enlargement should be determined using you as the baseline.

This is particularly true because you are of small stature: you may well have started near the lowest end of the "normal" scale in chamber sizes, as befits your body's requirements. The range of normal is a large one, especially if your ventricle has to expand all the way to the other end of it before the cardiologists even start to view it as abnormally enlarged. Find a copy of your oldest echo, and use the sizes there as the starting reference point.

You shouldn't be exercising in this situation. I'm sure they told you that. I really hope they told you that. Please tell me they told you that. It won't help, and will very likely exacerbate the enlargement and the possibility of permanent damage.

I wish you well. Please keep us up with how things are going with you.

Best wishes,

 

[ALCapshaw2]

Barb,

I agree with and second everything Bob H stated in his post.

If I were in your situation, I would start interviewing SURGEONS - TOMORROW, or at least be making appointments tomorrow. Take your tapes with you.

ALL surgeons should be familiar with mechanical valve replacements. For other options, and aneurism repair, you may need to ask more questions about their experience with your valve of choice and aneurism repairs. Your cardio may help with referals or you can just start asking around and making calls.

Bottom Line: An over the top EF is NOT a good sign. Hold off on the exercise!

'AL Capshaw'