Newbie with bi-severe-aortic-stenosis

[tomdickandharry]

Hey y'all,

Here is my first post and I have read lot of other posts before deciding to join.

Thanks,
Tom

 

[epstns]

Tom, from those measurements I would agree with your PCP in that your stenosis is statistically moderate to severe. What that means is that you are nearing the point at which they will recomment that you begin the surgeon selection and planning processes. Most cardio's these days seem to use 0.8 cm2 as their trigger point to start planning surgery.

That said, you have held back some important information. Do you have any symptoms so far? The "cardinal" symptoms to watch for are shortness of breath, fainting, chest pain (did I miss any?). If you have any of these, you should be talking with a surgeon sooner rather than later. The emergence of symptoms means that possible damage to your heart may happen soon, and sometimes this damage cannot be reversed even with surgery.

If you have none of the cardinal symptoms yet, you could possibly "watch and wait." with periodic echo's and exams to be sure that you and your cardio know when things begin to slip. The point if you do this is to be extra vigilant watching, because you can have other complications creeping up on you with a worsening stenotic valve. I had aortic stenosis and took the watch and wait approach. My surgery went just fine, but I ended up with not only the expected valve and bypass, but a shiny new pacemaker as well. Could I have avoided the pacemaker if I had gone through surgery sooner? We will never know. . .

I'm not trying to scare you - only trying to keep you focused on the fact that this is important. My valve took several years to get from 1.4 cm2 to 1.0, but it wasn't long after that that we were at 0.8. The saying about aortic stenosis is "The worse it gets, the faster it gets worse." Surgery sooner rather than later may be the way to go. (I'm sure there will be others who will chime in with their own experiences, so just hang around a while and read. . . )

 

[scott.eitman]

Steve, nicely put. The number that I have always paid the most attention to is my ejection fraction (EF). It is just the number that my cardiologist have put more emphasis on...or at least I have.

 

[Julieaka]

Approaching 1 year from my AVR and aneurysm repair and I can NOW say I had symptoms that I just lived with for about 7 years. Numbers are just numbers - do listen to your body!

 

[ALCapshaw2]

Tom - If I were in your situation, I would beging interviewing Surgeons NOW.

We have an expression that goes "The Worse it Gets, the Faster it gets Worse" which is especially relevant to Aortic Stenosis.

Valve Problems do NOT get better on their own. Eventually bad valves need to be repaired or replaced.
Personally, I see little benefit in waiting. Surgeons typically like to operate before there is any permanent damage to your heart walls and muscles. Nationally, the Risks are about 1% risk of mortality and 1% risk of morbidity. Those numbers are even less in the hands of highly experienced Valve Surgeons at the Major Hospitals. You don't even want to think about the risks of NOT getting Fixed.

'AL Capshaw'

 

[drivetopless]

When I was first diagnosed, I got an echo every 6 mos the first couple of years. Once we learned my valve was currently stable, we went to an annual echo.
Then when it started changing 13 years later we went back to 6 mos. In the last year before surgery, I saw the cardio every 4 months (without echo), so he could listen to my lungs and heart and check for edema.
I started looking for a surgeon when my valve got to .7-.8cm2. I had some mild symptoms by then. By the time I started looking for a a surgeon, I sort of knew what valve type I was leaning toward, but I was open to hearing others opinions.

While waiting is no fun, it is nice to not be rushed. I would start preparing now in gathering information but at a leisurely pace.

 

[Greg a]

Tom, a heart felt WELCOME to our OHS family glad you found the site to help you along, there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[a4wanman]

There is no magic checklist for when to have surgery. Everything needs to be taken into account: Ejection fraction, LV diameter, gradient pressures, aortic aneurisms, symptoms, etc. Start at 6 years old I had echos/checkups every 2-3 years, then every other year, then annually, then every 6 months. Main numbers we were watching where ejection fraction (getting close to 50%) and LV diameter (6.8). Also had an aortic aneurism of 4.7.

Basically, the rule of thumb is to replace it before it's too late (irreversible damage), but not before you have to.

I knew I was getting closer, but a nasty enterococcus bacteria gave me bacterial endocarditis. After 6 weeks of IV antibiotics, it was decided it was time to take care of the valve.
A few months after surgery: EF 63%, LV 5.4 cm. Whoohoooo!

 

[bdryer]

Hi Tom

I was diagnosed at 55 with severe AS of .6cm2 and an aneurism of the ascending aorta of 4.5 cm. I was not symptomatic. If I had not failed an ECG I would have dropped dead in a sporting activity. "Numbers are not just numbers", they are a true scientific evaluation of heart disease/defects. Ignore the numbers, prolong surgery, you WILL end up with secondary heart damage, like irreversible thickening of the heart. 16 mm is the upper limit where the heart may recover/remodel. As the valve narrows, Px drops and velocity increases as the blood is ejected through the valve. This high velocity jet slams into the aorta and causes an aneurism. As the ventricle thickens and expands nerves may be damaged from the SA or AV nodes [internal pace makers] and you end up with a bundle branch block. Worst case scenario from a bundle branch block, you get a shinny new pace maker.

Did I scare the sh_t out of you? Good! Now go forward and get the required surgery accomplished.

 

[kailin]

The saying about aortic stenosis is "The worse it gets, the faster it gets worse." Surgery sooner rather than later may be the way to go. (I'm sure there will be others who will chime in with their own experiences, so just hang around a while and read. . . )

That has been my experience - when first was told I had severe stenosis at 0.7, and would "someday probably need OHS" there was no timeline given for that, and my intent to see if i could reverse that with nutrition and exercise was encouraged. But as soon as I was "symptomatic" with the same or almost the same numbers, the symptoms began to intensify fairly quickly. At first I wanted to blame it on lack of exercise during a very difficult winter, but when I got light-headed after slowly climbing a flight of stairs, I had to admit it was time. Only took this long because had to create a home to come back to first. Since I had lived overseas, this took a while because had to get furniture as well as an apartment, and the cardiologist seemed to think I could wait until fall if I wanted. I don't -- want to get this over with so I can go back to work sooner! Well, OK, after a quick trip to London first *blush*

So today saw the surgeon and have to admit was a bit surprised that I've got only 8 days left to do whatever else I want to do first - guess the paintings won't get hung, but oh well.

Numbers, and symptoms. Numbers alone probably won't be enough. Getting out of breath was the key one, and now exertion is harder every week. And better to do the surgery than risk a stroke. At least, that's what I'm being told here.

 

[tomdickandharry]

EVERYONE..THANKS FOR ALL YOUR COMMENTS. I don't have any symptoms.

 

[skeptic49]

Thanks for posting your interesting report. You seem to be about at the borderline (41mmHG mean gradient and 1 cm2 valve area,) even though you are not experiencing any of the classic symptoms. It's amazing how the body compensates. Also, some symptoms can be so subtle that you hardly notice them. I agree with Al C that it makes sense to get the surgery done before any permanent damage occurs.

Best wishes,

Jim

 

[Rocky]

I think that caution needs to be exercised when symptoms present themselves, particularly in how we interpret them.

My valve was .51 cm and I was mostly symptom free. All I had was a bit of lightheartedness and a slight cough. I initially went to my family Dr to see if what I had was a persistent cold.

It was four weeks from the initial Echo to the surgery so it is easy to see that they where concerned.

After surgery, the surgeon told me I probably had two to four months to live from about November forward.

 

[normofthenorth]

TD&H, I think you've heard a great presentation of the arguments for getting surgery sooner, and a few "softer" statements in the opposite direction, like "it is nice to not be rushed".

I've got another argument for some waiting, until you get some noticeable CV symptoms, unless everything else says "Go NOW": During the 3-12 months post-op, you'll be gradually recovering your CV fitness, and returning to most or all of your normal activities. One of the key criteria -- a key answer to "How are you doing?" -- is to compare your slowly improving post-op fitness level to your pre-op level. If you felt "too good" on your way into surgery, it will generally take you much longer to feel that good again, and that's a serious downer for most people.

Shortly before my surgery, I was having to stop to catch my breath from running up 3 flights of stairs (from a subway station) then immediately power-walking a few blocks to home. I haven't tried the stair-running yet (7.5 months post-AVR), but I THINK I may finally be roughly that fit. If I'd had the surgery 1.5-2 months earlier, I would have been totally symptom-free, and I might have to wait another 3 or 4 months to feel that great. Yes, this is all psychological rather than physical -- and if I'd had the surgery 4-6 months earlier, I might have been able to skip the MV repair, and that's physical. But how you FEEL during the year after your surgery is important, and may be a key consideration for you, and may help you decide to wait a while.

BTW, I don't think you've mentioned how old you are, or what kind of valve (mech vs. tissue) you're leaning toward. Those facts and choices also may present some considerations for the timing of the replacement.

 

[ElectLive]

... One of the key criteria -- a key answer to "How are you doing?" -- is to compare your slowly improving post-op fitness level to your pre-op level. If you felt "too good" on your way into surgery, it will generally take you much longer to feel that good again, and that's a serious downer for most people.

... BTW, I don't think you've mentioned how old you are, or what kind of valve (mech vs. tissue) you're leaning toward. Those facts and choices also may present some considerations for the timing of the replacement.

I'm going to disagree a little with point #1 and strongly agree with point #2.

My situation was a little different, surgery was aneurysm driven with no symptoms. Perhaps that changed my perspective a little, but I never felt any frustration with a "long" return to normal. It's heart surgery, I wasn't greedy, so was pretty easy to be patient and not get frustrated. I'm young, maybe that matters too, my fitness recovery was quite speedy I think all things considered. Would I have rather waited until I had symptoms? Absolutely. Did it bother me going from the best shape of my life to struggling to get back there for 6 months or so? Not really at all.

I do think age and valve type are absolutely two of the most important factors to consider relative to timing.

 

[normofthenorth]

ElectLive, I take all your comments on my point #1 as a "friendly amendment". I THINK what I warned about would be a "serious downer" for "most peole", and it wasn't for you. Fair enough. And some others may be self-aware enough to predict, pre-op, whether or not this consideration will be important in their own recoveries. I'm certainly not suggesting that it's important enough to outweigh permanent heart damage, but sanity is important, too. . .

 

[Rocky]

I am proactive with my health and like to be involved in all decisions about it, with my Dr's, chiropractor, dentist, etc.

I researched all aspects of a mechanical and a tissue valve before I met with the surgeon. He gave me his opinions, I gave mine, and together we decided that the best choice in my situation was a Mechanical one. But even if I thought my choice was best, I would have trusted him if he had disagreed with me.

There are times when we must trust that the knowledge and experience gained by our practitioners is more important than our own fears due to our lack of those experiences and knowledge.

I think it is critical to understand what is going on in each one of our situations, but it is even more critical not to let our fears or our own self diagnosis interfere with sound medical judgment. And that is our Doctors jobs.

 

[ElectLive]

Rocky - Well said. Reaching that point is different for everyone, but equally important no matter when in the process it happens.

At the end of the day, everything is important, I think. Sound medical reasons to either move forward or wait would seem to matter most, but personal and pyschological issues do matter too.

As an example, my first impulse was to postpone my surgery several months. My reason? My wife was pregnant, third trimester. I'm a hope for the best, but plan for the worst type of person, so I'm sure everyone can guess a few of the things that went through the mind.

But my point is that everything should be factored in, and as all of us who've done surgery know, at a certain point, you just reach that moment of clarity. Different reasons for different people.

Tom, if you're unlucky enough to be like me, you may waver back and forth, agonize over things, and change your mind several dozen times, but whatever factors are most important to you, it will all sort itself out eventually.

So, by the way, back to my story, my wife talked me into not postponing the surgery, and I was lucky enough to be there for the birth of my second child too. Takeaway thought: if you're married, just let your wife decide...

 

[ken taylor]

As you know from my post i agree with al and because of that im 7 weeks post surgery and walking 7 miles a day , every day . And i feel great there is no thing to gain by waiteing and the more south your heart goes the harder and longer your recovery is. Of corse if you are inactive are a couch potatoe it might not matter. P. S. Thank you al i listened!!!!

 

[Rocky]

I consider myself very fortunate. I did not know I was "sick", found out very quickly that I was, got immediate attention, and then recovered quicker than most, with only a slight bump at 5 months, and that was due to improper medication levels.

It was only a two month ride between "your gonna die" and "get back to work" with OHS in the middle.

What concerns me is if others think this is the norm, it is not.

The journey we all go on after our surgery is as diverse as the journey we all took to get to it.