Why so many problems?

[Ovie]

Browsing the site since I've been here, I've noticed many people have had multiple heart surgeries, I know some have had problems since birth and needed updates periodically most likely.

I'm having AVR, do other problems come along with that, heart wise? I mean obviously nothing is written in stone when it comes to health, but I was just curious if one problem leads to a chain reaction? or different diagnosis with the heart brings along different problems?

Just something that was on my mind and know little about so figured why not ask.

 

[epstns]

Ovie - What may seem like many people having multiple problems and complications may really be the small percentage of us who do have complications just being vocal about it. Sometimes it helps to vent, and this site is a good place to do that as many other members have traveled the same path we do. As with many internet forums, often it is only those with issues that we hear from.

My own opinion is that only a small percentage of patients have complicated situations, but those are the ones who stick around for support as we work through our issues. Many of the folks who had the simple cases drift back into their lives and only pop in here once in a while.

 

[Superman]

The only major "later" problem that seems to consistently come up is the aortic aneurysm. For people with a bicuspid aortic valve, this seems to be part of a greater connective tissue disorder.

http://cardiovascularbusiness.com/index.php?option=com_articles&article=29568

Despite a low incidence of dissection, patients with BAV incur significant morbidity. Additionally, aneurysm formation was 26 percent and valve replacement 53 percent for this population.

Another item I've read about, but have yet to see much anecdotal evidence of in here is that the likelyhood of a brain aneurysm could be as much as 10x more likely in an individual with a bicuspid aortic valve than in a "normal" person. Keep in mind that while 10x seems like a lot, it is an extremely rare occurance in the general population and therefore only a little less than extremely rare in our case.

http://www.sciencedaily.com/releases/2010/05/100503161227.htm

Six of the 61 people with BAV had brain aneurysms, or 9.8 percent, compared to three of the 291 people who did not have BAV, or 1.1 percent. Studies have shown that 0.5 to two percent of the general adult population has brain aneurysms.

I'm under the impression that we are still being learned about. It's a matter of fully understanding the impact of this genetic condition beyond just the obvious valve situation. I refer to it as "the next thing". Okay, we can fix the valve and get them to survive. Well, with all these valve patients surviving a lot longer than they once did, we're discovering that they have a tendency to develop an aortic aneurysm. Okay, now that we're screening for those and fixing them, we're discovering that the survivors are more likely to develop a brain aneurysm.

It sounds scary, but we are all very fortunate to live in this day and age we're as long as these things are being watched for, they are very treatable.

I know when I first got my mechanical valve at 17, I was set for life. There was no discussion of monitoring for an aortic aneurysm as research either wasn't being done at that time or wasn't conclusive enough to base treatment on. Well, at age 36 I was surprised to learn I would have my second open heart surgery due to an ascending aortic aneurysm. Am I set for life now? Don't know. I don't know how extensive the connective tissue disorder is. Should I get a MRI or CT scan every five years to screen for brain aneurysms? Some in the medical profession think so - but insurance companies don't agree yet. Will my connective tissue situation just move down the line and develop an abdominal aortic aneurysm? Don't know that either.

I continue to go in every year to visit my cardiologist and get an echo and whatever other testing they recommend. If something comes up, I hope it's caught. If it's caught, I'm very confident that it's treatable. While not convenient or pleasant - it's far better than 50 years ago and I would have been long dead were I born 100 years earlier.

 

[AgilityDog]

I think Steve is right. Those who hang around long term tend to be those of us with multiple issues, or who had sudden onset with huge complications that really impacted our lives.
Most people with simple fix and forget it cases don't stick here very long after recovery.

I know since my 2nd replacement I feel so much better that I'm spending less time here. I have less impact on my daily life now, and after 5 years, all the repairs are finished. I'm no longer waiting for the other shoe to drop, as it were.

 

[Lynlw]

Am I correct you are thinking about people like Sarah and my son Justin and Cort (who is recoverring from I beieve his 4th ohs a tissue aortic valve) who've had 4-5 or more OHS already? Many of them in their teens or younger? If so I wouldnt worry about that. Most people whove have multiple heart surgeries, were born with VERY complex hearts (congenital heart defects CHD) that basically had to be rebuild in the case of Sarah and Justin and a few of the other relatively young people who had multiple OHS. The structures were completely wrong and not really functional, with out surgery as babies they would not have reached age 1, or grade school in some cases.
Some of the most complex CHD need 2 or 3 staged surgeries as babies/toddler, because they have to rebuild the heart into such a way it will function. For example Justin was born with "transposition of the great vessels" (where the Aorta and pulmonary Artery are backwards) and VSDs and ASDs (holes in the septum -walls between the various chambers of the heart) as well as pulmonary stenosis/ atresiawhere the (pulmonary valve and artery were almost comletely closed off) and a few other problems.
so they had to rebuild his heart in such a way it doesnt look like a normal heart, but fuctions pretty much as one as far as where the blood flows.Of course since the heart was about the size of a walnut , many parts need replaced as they outgrow them etc Then there are things like scar tissue or infections (BE) that make them need more surgery sooner than hoped for. Before the 80s the babies with the most complex CHDs didnt make it and were often sent home to die, but with surgical advancements many of them are becoming adults and many things docotrs learned from them from how to help with more common post op complications to the safest way to open chest 5-6 or more times, benifitted everyone.

I think it would be safe to say if you make it to your 20s or 30s before you need any heart surgery, odds of having bad problems like that are pretty slim, if they havent diagnosised them by now.. there MAY often be a small hole they find during surgery they can usually close with a stitch or two. Then
as Superman mentioned IF you have BAV you might also have some "weaker' connective tissue thats might cause annuerysms or other annuerysms in the body or brain, Often when you are in the OR and the surgeons get good looks at the tissue and send out samples they can see wht the tissue looks like.

Now if you are asking about post op complications and not multiple surgeries sorry.

 

[dick0236]

I'm having AVR, do other problems come along with that, heart wise? I mean obviously nothing is written in stone when it comes to health, but I was just curious if one problem leads to a chain reaction? or different diagnosis with the heart brings along different problems?
.

In the 5 years I have visited this forum I have seen many who post for information and support....then go away and live their lives. Many continue to visit the forum to offer support and/or information to those who are starting to deal with a "heart condition". OHS seems to be scarier than a lot of surgeries....even tho many doctors consider it easier and safer than many other surgeries....but it does require the implant of a foreign device:eek2:, either tissue or mechanical, that we need to learn how to live with:confused2:.

I am one of the ones who has had virtually no problems since my surgery a long time ago. My only serious problem was "self-inflicted" due to my ignorance of warfarin, during a time when information, thru sources like VR.org, was non-existent. I stick around, primarily to add my experience dealing with ACT, so others can avoid self-inflicted mistakes, and to show that a long, nearly normal, life can be lived:thumbup:........and besides, I continue to learn from the experiences I read on this forum:cool2:.

 

[escargome]

Ovie,
I was born with BAV. However, since it was the 50"s and my family was somewhat poor, I was not diagnosed with a murmur until I was 13. I lived with this murmur until I was 56. I had been followed by a cardiologist once a year (if I got around to it since I felt fine). Well then 2008 brought me bacterial meningites and during my stay in the hopsital the cardiologist there was somewhat concerned that infection may have attacked my valve so following an EKG, CT Scan and TEE, he determined that it was time to replace my stenotic valve. But not until I had 8 weeks of antibiotics. I decided on a tissue valve and I have not had any complications either with the valve or post-op. I was and am still quite happy with my outcome. I visit my cardiologist every 6 months because he likes me and have an EKG every year. I didn't find this site until after my surgery, but I come back so that if there is anyone who might find my words of encouragement helpful, then I have done something worthwhile.

 

[drivetopless]

When I had my surgical consult, my surgeon wanted to know what kind of BAV I had. I think he called the twotypes "Functional" or "True." One type was linked to the connective tissue disorder and associated increase of aneurysm. The other type was just a BAV, possibly caused by something like rheumatic fever.

 

[escargome]

When I had my surgical consult, my surgeon wanted to know what kind of BAV I had. I think he called the twotypes "Functional" or "True." One type was linked to the connective tissue disorder and associated increase of aneurysm. The other type was just a BAV, possibly caused by something like rheumatic fever.

The info I got from the cardiologist and the surgeon was that as far as they could tell I had only two flaps but they could not be truly certain due to the extreme amount of calcification. Ah well, its a moo valve now and I feel great!

 

[debster913]

Hi, Ovie,
I'm an "odd duck" as far as my post-op adventures go. Mitral valve repair was uneventful...but then 8 months later I found out I had scar tissue inside my right femoral artery at the groin from the heart-lung bypass tubes, then I developed a dangerous arrhythmia which I had an ablation for 2 1/2 years after surgery, and then I developed A-Fib. Now I have lung issues, and neither my cardio nor my regular doctor know why or what the problem is. I thought that after valve surgery I would go back to seeing my cardio once a year, but for the past 6 years now, I have been seeing him pretty regularly, about every 2-4 months. If it's not one thing with me, it's something else. Not to freak you out or anything...I'm just a different case.

BTW...I see you are from Sioux City. My grandmother lived in Sergeant Bluff, and my mom graduated from Merrill High School. I have an aunt who still lives near Le Mars.

Best,
Debi

 

[Ovie]

Such a small world deb. I'm familiar with both locations.

I'm going to change the whole getting surgery and than never come back here curse.

Also it was interesting to hear about the continuous problems, wasn't directed towards anyone in particular, just curious.

 

[Sean L]

So far, my cardio doc says everything else with my heart looks good...just the Aortic valve that's the problem for now...and my surgery is likely several years away. I think everyone, depending on what they have to deal with, handles these things differently. I draw inspiration from those who've had big challenges, but still live their lives, and are here to support those of us who are new to the "waiting room".

 

[Boston Tiger]

Ovie - What may seem like many people having multiple problems and complications may really be the small percentage of us who do have complications just being vocal about it. Sometimes it helps to vent, and this site is a good place to do that as many other members have traveled the same path we do. As with many internet forums, often it is only those with issues that we hear from.

My own opinion is that only a small percentage of patients have complicated situations, but those are the ones who stick around for support as we work through our issues. Many of the folks who had the simple cases drift back into their lives and only pop in here once in a while.

I think you've hit the nail on the head. If all goes well with the surgery, it's easy to put the whole experience off in a corner of your mind, especially if you are at one of the busy points in life. I came looking for a site like this after our daughter headed off to college last fall, since you all of a sudden have lots of time on your hands when you become an empty nester. My experience was still fresh enough in my mind that I wanted to help other people through the scary period right around their operation. As I've said before, I wish I knew about this site back when I was in that group!

I was lucky enough to have relatively few problems after my surgery, but will still post here because it's very good for the people facing their first surgery to know that this is a possible (if not probable) outcome.

 

[carolinemc]

I have found over the years, there are so many possibles in life you never knwo what may happen from one day to the next. It is not good to dewll on what might happen tomorrow, you have to be able to look forward without worry. Having multiple surgeries is a fact of life some here, less for others. It just comes with the territory and medical advances keep up with the changes all the time. With these changes and advances, we are living longer and we are just glad and proud to be alive for a change. You are just a wonderful person to ask questions here. I have been a heart patient all my life and am proud to have many different friends but who understand what I went through almost 11 years ago. Just keep asking questions, knowledge is powere. Hugs for today.

 

[Guest]

Am I correct you are thinking about people like Sarah and my son Justin and Cort (who is recoverring from I beieve his 4th ohs a tissue aortic valve)

Lyn ... you are correct ... 4th OHS!


Ovie,

My first 3 open heart surgeries were relative to my congenital heart defect of being born without the pulmonary valve. I'm on my 3rd pig valve installed in place of the missing pulmonary. My last OHS for that was 01/06/2003.

My most-recent OHS, 11/11/2011, was to replace my enlarged aortic valve ... which was caused, in part, by me not having the pulmonary valve.



Cort | 38.m.IL | pigValve + paceMaker + cowValve | 5 MCs + 1 Caprice Classic
CHD.MCs.CC + RoadTrips.hobbies.RadioShows.us66 = http://www.chevyasylum.com/cort
"Tell me what you see" __ Bob Carlisle __ 'Getting Stronger'