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Ambriz

Well-known member
Joined
Sep 5, 2010
Messages
64
Location
CA
Hi, I opened this membership for my husband but I imagine I'll probably be the one using it because he is not much of a forum reader or poster.

If he does post, I'll make sure you know who is talking.

My husband is 41 and has a bicuspid valve, aortic valve stenosis, regurgitation and a heart murmur. They say he will probably need surgery in a year.

We don't talk about this much.. both pretty scared. I'm hoping reading and posting here will ease some of the worry because I'm pretty much freaking out.

Thanks for being here.
 

Cooker

Chillin, just chillin....
VR.org Supporter
Joined
Dec 15, 2005
Messages
10,540
Location
South Carolina
welcome ... this is very scary stuff ... my wife and I walked all around it until we admitted being freaked out ... but the more we learned the more at ease we became ... this forum is a God send to many facing surgery, it sure was to me ... I know it is easy for me to say, but it is not as bad as it may seem ... I was 49, almost 50 and was back at work in 5 weeks ... the pain was nothing like I expected, much, much less ... it is serious surgery but there are many here to help him up and over the mountain:thumbup:
 

Nancy

Well-known member
Joined
Jun 10, 2001
Messages
9,896
Location
upstate New York
I posted for my husband also. He had no interest in computers. Read as much information as you can and get familiar with the lingo of heart valve problems. Every day you read posts is another day that you will learn something useful.

Make sure to go to the Reference Sources forum. It doesn't show much right now, but if you go to the bottom of the page where it says Thread Display Options on the left and click on the blue arrow where it says Last Day, it will bring up other options for displaying many more items.
 

Freddie

Well-known member
VR.org Supporter
Joined
Jul 19, 2007
Messages
5,940
Location
Canada
Welcome Ambriz,
I only had 3 days to get prepared for surgery, no time to learn anything - basically went into surgery blindfolded. This site was a God send for me (and still is) when I found it 3 months after surgery.

So consider yourself lucky to have found this site and don't be shy about asking question. No question is too dumb - we all can learn from questions that are asked.
 

Michelle D

Well-known member
Joined
Jun 14, 2010
Messages
620
Location
Florida
Hi, it is scary I was told I needed open heart surgery back in February and had my surgery right before my 28th birthday six weeks ago. I think at first I was in shock and my husband and I tried to act tough but once we aired out how we felt scared it was easier. Even though I had many complications after my surgery, and currently dealing with seriously annoying medication side effects and so on, but the worst part has been the anxiety.

Have you guys choosen a surgeon yet? I must highly recommend checking out the Cleveland clinic. They had the best staff, I'm so glad I went there. After going there all my local hospitals down here in Florida make me feel like I'm in a third world country. I was less anxious about my surgery beforehand knowing that they had very good numbers, I went to the safest place that was available to me.
 

Ambriz

Well-known member
Joined
Sep 5, 2010
Messages
64
Location
CA
Thanks for the welcome. I've been reading about his condition for about a month now, but it gets overwhelming and I start crying and having panic attacks so I back away from it. But I think we really need to start talking about this and making plans for this surgery from what I'm reading on posts here..
I just don't want anything bad to happen. We've been married for 19 years and have known each other since we were both 16... so yeah. this is scary as hell.
 

Ambriz

Well-known member
Joined
Sep 5, 2010
Messages
64
Location
CA
Have you guys choosen a surgeon yet? I must highly recommend checking out the Cleveland clinic. They had the best staff, I'm so glad I went there. After going there all my local hospitals down here in Florida make me feel like I'm in a third world country. I was less anxious about my surgery beforehand knowing that they had very good numbers, I went to the safest place that was available to me.
No we have not chosen a surgeon, which is another question I have. We are with Kaiser Permanente. I'm reading posts here about people deciding to go to different states to have the surgery. I'm assuming this is people with private insurance? Anyone have any experience with Kaiser? He has had an MRI, which is how it was found, during a workers compensation case. The workers comp doctor told him at the time that it was something he would probably have to worry about in about 15 years. (he was 38 at the time) A few months ago he got some info from the workers comp case again and decided to follow up on what he was told back then and now we find out he will probably need surgery in the next year! I feel so stupid that we didn't follow up with this back when we first heard about it.

He had a cardiac stress test a couple of weeks ago and we have not heard from the doctor. I think we have both been sort of doing the "no news is good news" thing and we have to stop this! But the more I try to concentrate on this the more freaked out I get and now I'm starting to wonder if something is wrong with my heart as well. (im a pretty bad hypocondriac, and I know that's not going to help things lol so i'm going to go get myself checked as well just to put that out of my head so I can concentrate on helping him) He doesn't like it when I start reading on these forums and places because of how nervous I get after reading. I'm trying really hard not to throw my panic onto him.. but I don't always succeed. I hope having a place to talk will help.
 

buncle

Well-known member
Joined
Aug 5, 2009
Messages
337
Location
texas
Many of us think knowledge helps us understand our condition better . For me knowing what I was preparing for was a very big help. OHS can be overwhelming.But, for me to be able to breakdown it down as steps made it easier to "get my head around".
 

Eva

Miracle Believer
VR.org Supporter
Joined
Aug 8, 2008
Messages
4,232
Location
Redondo Beach, CA
Thanks for the welcome. I've been reading about his condition for about a month now, but it gets overwhelming and I start crying and having panic attacks so I back away from it. But I think we really need to start talking about this and making plans for this surgery from what I'm reading on posts here..
I just don't want anything bad to happen. We've been married for 19 years and have known each other since we were both 16... so yeah. this is scary as hell.
I have gone through the same...I cried a LOT too many times ... spent too many hours researching and surfing the internet worrying and scared. After the surgery, I felt sad that I wasted all that time worrying *unnecessarilu* -- the surgery was much easier than I expected in every way.

I know many people who had their surgeries at Kaiser and were very happy with the results and encouraged me not to worry much.

Good luck :)
 

ALCapshaw2

Well-known member
Joined
Mar 20, 2003
Messages
6,910
Location
North Alabama
Welcome Aboard Ambriz !

The FIRST thing you need to know is that while Heart Surgery is Major Surgery, it is also a Highly Refined Art with incredibly high SUCCESS RATES. The Risk of Morbidity is 1% and Risk of Mortality is 1% on a National Basis. It is even Less at the Major Heart Centers. Don't even think about the alternative of doing Nothing. The outcome from 'sticking your head in the sand' is demise in a few years after reaching the critcal stage.

Being Freaked Out when you first hear that you (or your family member) has a Heart Problem and will probably need surgery is a pretty common reaction seen in LOTS of posts from 'newbies' to these forums. It gets better the more stories (of SUCCESS) you read and learn to put this New Reality into perspective.

You can learn LOTS about BAV (and the often associated Connective Tissue Disorders) in the BiCuspid Aortic Valve and Connective Tissue Disorder Forum. I always encourage BAV patients to find a Surgeon with experience in these areas. Two of the Top Surgeons in Californina are Dr. Laks at UCLA and Dr. Craig Miller at Stanford. Personally, if I had BAV I would NOT even consider going to a Local Heart Hospital that does mostly ByPass Sugery. There are Several Levels of Heart Surgery. The Major Heart Hospitals is where you typically find the Surgeons with lots of experience dealing with the less common and/or more complex cases. In their hands, the risks are virtually no greater than first time simple surgeries because they have 'seen it all' before and KNOW what to do to FIX it.

Keep on reading but give yourself a break if you find yourself becoming too anxious.
Eventually this all becomes 'second hand' as you learn your way around and see how well others have coped and recovered.
Most report that the Waiting is the Hardest Part of the whole ordeal!

Please feel free to ask any Questions that arise as you learn more about this 'new venture' in your lives.

'AL Capshaw'
 

dick0236

Eat the elephant one bite at a time
VR.org Supporter
Joined
Feb 10, 2007
Messages
3,079
Location
louisville, KY USA
We don't talk about this much.. both pretty scared. I'm hoping reading and posting here will ease some of the worry because I'm pretty much freaking out.

Thanks for being here.
Welcome to you both. You have plenty of time to research OHS and make intelligent choices, but beware of information overload. There is a LOT of info available....much of it is good, but not all of it. Read, ask questions....and take a few deep breaths. As you learn more about this, you will find that for most, it is a BUMP in the road and then life goes on pretty much as normal.

As for being scared.....yep, it happened to us all.
 

Angel

Well-known member
Joined
May 27, 2010
Messages
173
Location
USA
Bless your hearts. I can understand where you're coming from. I'm the wife and it was me that had to deal with getting the horribly frightening news of a bicupsid valve, at first moderate stenosis, which went to severe stenosis within two years. I had my AVR root replacement (porcine tissue) June 25 of this year, 10 weeks ago. I also had to have a single bypass as well that I was pretty surprised about. I am 47 years old. I can tell you that this totally changed my life in every way and I too have been married to my soulmate for 18 years this July, 2010 and I was scared to really open up and talk it all out with my husband. I was overwhelmingly sad and felt like a death note was there for me. I was overtaken by fear and anxiety and everything else you can think of. Thankfully I found this wonderful site and I got to read for myself the stories from those that have gone through the same thing as I was facing. I was totally petrified, to put it mildly. Just want you to know, that if I can make it through it, anyone can. The surgery was not the easiest thing ever, but honestly it was not as bad as I expected. The first 24 hours was my worst I guess I would say,but during that time, you're so in and out of it. They really do manage the pain very well. Don't be surprised by the "blues" that will probably come afterward. I thought I had escaped that, but probably around 2 weeks post op, they hit me and it's very common. But, the good news is, it will get better, and I do mean better not on a daily basis usually, but definitely better on a weekly basis. I've done very well and I've had no setbacks as of yet, thankfully. I'm very thankful to have it behind me now and the waiting and before time is defintely the worst!!! The fear of the unknown. Your husband will do just fine sweetie, I'm sure of that. You'll be surprised to hear how many people are getting valve replacements nowdays, young people at that. You'll be in my thoughts and prayers, along with your husband. Take care.
 

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