Amazing

[robertr]

All, I have only been on this forum for about a week, and the one thing that strikes me is the shear volume of people having Valve replacement surgery. What's the deal?

My need is an Aortic Valve Replacment and I am scheduled for 6/12, but again, why are there so many of us afflicted with this problem? Is it the water? The food we are eating? The shots we are all taking as newborns?

Personally, I have never met someone with this problem, but since I was diagnosed I see what a big problem it is... Any thoughts on this?

Thanks!

-Robert

 

[mntbiker]

Hi Robert,
Welcome to the site.

Uhm, this is a site for people dealing with valvereplacement so that may explain why there are so many of us.

Now don't hold my feet to the fire for documentary evidence to support the following but let's get a rough idea of the numbers.

Assume that there are 400,000,000 people in the US (the site has people from all over the world). It is estimated that 1 to 2% of the population has specifically a bicuspid aortic valve - considered to be the most common heart defect (we will leave all the other defects out for this) it is generally believed that about 1/3 (33%) of those will need valvereplacement. So let's do the math - 2% of 400M = 8M. 33% of 8M = 2.64M

So that means that in the US alone of the current population 2,640,000 people will need valve replacement. We have a membership of 1630 members. That works out to about 0.6% of the total number of people in the US that will need valve replacement being on this site.

I know the numbers aren't accurate due to failure to account for people whose issues have not yet developed to this point and so many other variables it was just meant to give a rough idea of the numbers involved.

 

[Mary]

Hi Robert.

Don't forget that until the 60's, the medical community wasn't doing valve replacements, so diagnosis of a severe valve problem was basically a death sentence. I don't think there is a sudden outbreak of people needing valve replacement; just people who are alive to have the replacement.

When you look at the ages of VR members, it does seem that a generation of Baby Boomers with valve issues have gravitated to Hank's website. I guess you might attribute the confluence to, "Great minds think alike"--with a few exceptions!

 

[centuryltd]

Hello Robert

Hello Robert

I'm sorry you need a valve replacement but you found a great place here with many wonderful and helpful people. Endocarditis got my valve, the doctors felt there had to have been something wrong with the valve to begin with for the infection to settle there but there is now no way to know for sure. Best of luck to you.

Steve

 

[epstns]

And. . . Don't forget about the advances in diagnostic medicine. Many of us have valve conditions that may be hereditary, but we never knew if our parents or other close relatives had those conditions. The family doctors, back in the 1930's and 40's probably diagnosed many valve patients with "weak hearts." I suspect that my grandmother had congestive heart failure that was mis-diagnosed as asthma. She ultimately died from the effects of multiple strokes that may have been related to heart rhythm disruptions related to her weakening heart. Several of my mother's siblings also had CHF and strokes. Maybe I'm the lucky one, having been diagnosed with aortic stenosis before any significant damage has been done. I KNOW I have a heart condition, my relatives probably didn't.

 

[Marguerite53]

Great question, Robert. And hey! Great answers, gang!!

Just wait afew months, Robert. Once your friends and family know more about your condition, you will find people who know people who went through similar surgery.... it's been like that for me, anyway!

Welcome to our community and keep asking questions!! You've got a lot to absorb in a short amount of time. Some of us are like that. Others of us have had the knowledge of our condition for years and years and have waited patiently for our "time" to arrive.

Marguerite

 

[hensylee]

I must agree with the others who say that this is a relatively new phenomenon in the medical field. I never heard of it at all when I was young (I'm pretty old); just knew there were those young folks who just dropped dead at exertion and nobody knew why. They'd just say the heart was involved. Modern medicine has come along by leaps and bounds since WWII and now it is not a big deal to hear about valve replacement. There were less than 100 members of VR when I stopped in 2000 but look at the site now. Many who come to VR are shocked all to pieces to know so many are affected. Valve Replacement is known to a pretty large bunch these days. Last Sunday in Sunday School class, a member was mentioned as having valve replacement (yep, I announced VR site, in case anyone wants to know).

Glad to have you amongst us.

 

[robertr]

Thanks!

Thanks!

You are all very helpful, and I'm Thankful to my wife for finding this forum. It has been interesting to say the least to trade thoughts with fellow VR patients ; ) I have been living for the last 3 years knowing that my day was coming (6/12), and frankly, I am almost to the point where I am actually anxious to get it over with. It has been a REAL burden to carry around for the last several years even though I am still basically asymptomatic. I only notice significant shortness of breath when/if I try a VERY short sprint. My cardio looks at my nails and my ankles every time I see him and he asks me if I have symptoms, and until this last trip (March) I have never reported any symptoms, nor have I had ankle swelling, and heck if I know why he's looking at my nails ; ). The sprint is the one I reported to him and it seems that that was all he needed. Boom - here I go...

Anyway, it probebly is better to get it done before I am synptomatic, but it's REALLY hard to stomach a ROSS procedure at 46 years old. I am very fortunate (at least I think I am) to have found Dr. Will Ryan in Dallas to perform the Ross. I hope the Ross is what I think it is... In other words: provides the best possibility to avoid another surgery in my lifetime. At least from what I have read it seems to offer a strong possibility of 20+ years - anyone think otherwise?

Thanks in advance for your feedback!

-Robert

 

[hensylee]

quote: "My cardio looks at my nails and my ankles every time I see him"

he's looking at the color to see if they are blue or purple (circulation). Of course you already know the ankle thing is for swelling.

I once had a surgery and was wearing nail polish when I went in. They immediately removed it so they could watch the nails all the time I was in the hospital. Seems the nails tell them a lot.

 

[sue943]

Don't forget that until the 60's, the medical community wasn't doing valve replacements, so diagnosis of a severe valve problem was basically a death sentence.

How true, my grandfather died at the age of 60 after being 'an invalid' for 19 years, not permitted to work etc.

 

[Christine]

I know i'm greatful for this site.. I unfortunatley or fortunatley depending on how you look at it, didn't know about valve replacement or this site until I landed my self in the hospital with full blown heart failure as I was misdiagnosed due to my age then (35 yr old female 4 years ago) - endocarditis - luckily I had a great surgeon in Dallas and rebounded quickly.. i knew i had a bicuspid but young and dumb in my twenties - didn't keep up with the echos.. i'm greatful for this site even 4 years later as I still have my pity parties occasionally, my visits come in spurts nowadays, but always greatfull to the people here.

Welcome to the site!

Chris

 

[PamO]

Same for us, Marguerite! After my husband's surgery, we found out two of our customers were having the same surgery!

 

[Guest]

Personally, I have never met someone with this problem, but since I was diagnosed I see what a big problem it is...

I knew there were others that have had open heart surgery (based on my experiences at the hospitals, etc.), but until I became a member here and at achaheart.org, I had no idea how MANY people had heart issues as well ... and, of those, how many of them I had OTHER things in common, too.

Robert, if you haven't met anyone yet, you will, if you want. I know there are a handful (or more) of people right in the Dallas/Ft Worth area ... I know because I met up with a bunch of them when I was in the area in October 2004 ... and I hope to be back in the Dallas area this coming October. I know a bunch of us are planning to get together for dinner some evening ... you and your wife are more than welcome to join us. I'll be posting details as that trip of mine comes closer.



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"A heart that's hopeful" ... Michael W Smith ... 'Place In This World'

 

[RCB]

Actually

Actually

The occurrence of valvular heart problem is probably less as a percent the population. Modern medical science has practically eliminated or controlled so many diseases that contributed to valve problems needing replacement. Go to a third world country and you find rates of RF that the US lowered over 50 years ago. If you look back over 75 years, many diseases which reeked havoc on heart valves are well contained today. It was common back then to just send people to bed and die.

Be glad you in the era you live and have hope that tomorrow will bring more cures