Hi All, I'm Alex

[epstns]

Alex,

I'm glad that you read some of the older posts and found some comfort and hope. I'm also glad that you found, as my cardio told me, ". . . People do not die from this condition. They tell me when it is time to fix it." Of course, if your decision was to do nothing, you could die from it - but in my years on this board I can remember perhaps two members who chose to do nothing and to just let it go. They are, sadly, no longer with us.

I was one who was nearly paralyzed with the thought of any surgery. I had surgery only once before the valve replacement -- I had a hernia repaired about 45 years ago. I did not want to repeat that experience. Well, I did not. Things have improved so much that even open heart surgery, with all of its scary possibilities, was very manageable. Not fun, but I made it through without losing my mind and I've gotten back to life even better than before. Would I do it again? If necessary, you bet.

 

[dwhist]

Yep another one from Elmhurst.

My 2 year anniversary was this past Monday. Time really fly's.

I did have my surgery at the new Elmhurst Hospital with Dr Davalle and was quite happy with results and my stay there. Maybe we can have an Elmhurst reunion one of these days.

 

[jyg]

Alex,

I'm glad you shared your story. I promise you, I promise you, the anxiety will pass. I'm not a fan of the idea that more information is better, but reading up is good for having an understanding of what is going on inside your body and also to realize that the medical world is thoroughly aware of what's going on with your heart. You'll find a lot of good information and you'll find much more poor information. Stick with places like Mayo Clinic, Cedar Sinai, Nation Inst's. of Health, American College of Cardiology and the American Heart Association and so on. And, of course, most importantly, you GP, your cardiologist and your surgeon are your best sources.

Also remember, this is the Internet. The loudest people are the ones who only speak up when they want to complain. You've seen Yelp!, right? Same thing with heart valve surgery patients who've had more difficult experiences. Fortunately it seems this forum (I'm new here too) has people who buck that trend... happy people who've been post-op for decades who want to speak up with their positive outcomes. Latch on to that positive vibe.

Me? I'm 44 and I've know about my bungled valve all my life and was told that I would never need surgery... until pieces started to pop off my aortic valve. (Don't worry, you're probably too young for that.) I found out I needed surgery about 8 weeks ago. Next week I go in. I'm no longer afraid, and you'll get there too.

Let me leave you with 2 things that have helped me:

- My grandfather had a 5-way bypass surgery when he was about 70 years old, 20 years ago!. He died when he was about 85. If he can make it and live to a regular old age, so can I and so can you.

- Daily I practice praying and reading God's word.

I hope this helps everything settle.

 

[clay_from_nj]

Anxiety? Fear? Par for the course. Suffering from CHF, with an EF as low as 15% at one point, and worrying about how I was ever going to able to get it fixed, I was constantly nervous and stressed out (hell, downright scared!). Survival statistics on CHF patients didn't help any. No job and no insurance and no money certainly didn't help my stress levels any. Years of denial and not knowing exactly what was wrong (diagnosed with BAV in the last two years) didn't help any. Having changed all that stuff, including lifestyle, and having the surgery made an absolutely incredible difference in my life.

There is no reason that your life will substantially change after you get fixed.

Well, your life may substantially change, for the better!

 

[annaaurora]

This is in response to jyg's comment. I find your comment rather condescending. Some times people just need to hear the stories. Not everything is positive, nor negative. People should be allowed to feel and express themselves after something like this. If they're happy that's great, if not that's OK to. Some people are dealing with psychological issues even prior to their illness. Don't assume how one feels. Thanks, I just feel really strong about this.

 

[jyg]

This is in response to jyg's comment. I find your comment rather condescending. Some times people just need to hear the stories. Not everything is positive, nor negative. People should be allowed to feel and express themselves after something like this. If they're happy that's great, if not that's OK to. Some people are dealing with psychological issues even prior to their illness. Don't assume how one feels. Thanks, I just feel really strong about this.

Hi Annaaurora,

I'm sorry if my post sounded condescending to you. I certainly did not intended it to sound that way. I'm not trying to tell Alex how to feel. He doesn't want to be anxious, or as he put it he wants to "feel normal again". I'm only giving him, and our community, my personal advice on how to get over that anxiety. I prefer not to focus on fear or the lower (and scarier) probabilities. I choose to focus on being hopeful, and then roll with the punches as they come. I'm a natural worrier. This is hard work for me, too. But I've been able to find some peace through the practices I've shared. I'm not telling anyone what they have to do or trying to flex some sort of superiority. I only share this in the hope that Alex, and others here, might be able to find some peace too. Yourself included

 

[aliciavicki]

Hi Alex, with time you'll find the easiest way to cope.

Unlike you, I've been monitored my entire life (Congenital Heart Condition was diagnosed at 3 days old), so I'm used to all the poking, prodding and general questions. I only found out that I needed a valve replacement two years ago though, and even then it was a total shock. I was 27 and felt like I hadn't even kept notes on myself. How could my condition have gotten worse without me realising?

So two days later, I went back to the weights program that I had started earlier that week, cried, hugged my devastated parents and started planning. I'm going under in 4 weeks and although I'm tired, I'm as ready as I'll ever be.

I found exercising to be a fantastic diversion, researching the surgery helped also, I read about 20 blogs and watched blog-videos, and have now started writing my own (www.aliciavicki.wordpress.com). Blogging isn't for everyone, but if you say "I'm having open heart surgery" loud enough and often enough, acceptance and excitement will come.

I wish you all the best on your journey - I'm sure, just like everyone else here is, that you'll come out the other side a stronger person

 

[Rebecca]

On this web forum someone posted that his doctor had told him he would know when it was time for surgery. I found out that I had a leaky valve when I was 36. At 43 and 50 I was told by my cardiologists that it was time for valve replacement, but with more tests surgery was never done. At the age of 54 I was telling my doctor that it was time for surgery even through my tests had not changed much. My heart no longer feels or sounds like a washing machine after having surgery.

When I was 43 at a heart health event one doctor told me about Arnold Schwarzenegger having surgery on his bicuspid aortic valve. At this time I knew when the time came for surgery I would be ok because Arnold was back making movies. Shaun White the Olympic gold medalist snowboarder was born with Tetralogy of Fallot and had surgery as infant. Mini Darth Vader (Max Page) also had successful heart surgery http://abcnews.go.com/Health/darth-vader-max-page-successful-heart-surgery/story?id=16557185

Matt take on having heart surgery at 20. http://mattoblivion.blogspot.co.uk/2013/03/that-time-i-borrowed-cows-heart-valve.html#comment-form

I know a little girl who just turned two and she has had three open heart surgeries .She had one to repair a hole in her heart, one to repair her mitral valve, and one to replace her mitral valve because the repair did not work. She will outgrow her mitral valve and need more surgery. This baby has many scars on her little body. She has scars on her feet from having her blood tested because of being on blood thinners. She also has the scar from a feeding tube. To see this little girl you what never know all that she has been though and she has always been a happy baby.

 

[pellicle]

Thank you all for the replies, support, encouraging words, and INCORRECT interpretations of my golf game! LOL.

glad to help. My neighbor is a > 70yo German who went through the war as a kid. He's a good bloke and rather like walking around with Walt Kowalski. As he's a keen golfer and happy to tell me I should give up IT and get into "turfing" cos I do so well at that.

its all in good spirits ;-)

 

[Rachel]

Let's face it. You played a bad round of golf and now you are looking for an excuse. You'll be fine and you will be back shanking your drives soon enough.

Thank you all for the replies, support, encouraging words, and INCORRECT interpretations of my golf game! LOL.

Nice sense of humor Alex – we need more of that on this site!!!! You’re going to be just fine! So to add to this…..I'm thinking that your surgery is going to improve that “dismal” golf game of yours…..

Frist - you live in Chicago so I know you’re not playing during the winter – getting surgery done now is a positive…..also (depending on your actual surgery date) you’ll be out there better than ever next summer/fall – you just wait – from one (former) panic ridden heart to another….and when you do I’d love to play a round with you – knowing full well that you’ll kiss my a$$....on second thought maybe I should just drive the beer cart and watch YOU play!!! and we'll keep you hydrated this time!

I’m not far – just on the other side of that big beautiful lake

 

[kimcdougc]

Alex,

I was in the waiting room for almost 10 years. They didn't discover from all of my echo's and tests that I had BAV until the Dr. actually did my AVR surgery in May 23, 2013. Educated yourself. There is a wealth of knowledge here on this board. It is what took away most of my anxiety. Finally, when you choose a Dr., hospital and a date for your surgery...you have peace knowing you did all you could. It is then up to your professional team to make you "well" again. Five months after surgery...life is actually better than before. Life does go on. We are all here for you while you are in the waiting room. Blessing to you.

 

[epstns]

Rachel - You CAN'T drive the beer cart. That's the only thing I'm qualified to do on a golf course. Besides, I'm already in Chicago!

By the way, Alex, I've never really understood the game of golf. First, you spend $30 or 40 to buy a box of balls. Then you put the first one on the ground and hit it as hard as you can with a big stick. After that, you walk down to where you think your ball landed. You wander around in the weeds and nettles until you find the ball. What do you do next? You don't put it back in your pocket and move on, do you? No! You just hit it again with another big stick and start the whole process all over again! Wouldn't it be much easier just to drive the cart over to the clubhouse and grab that beer or cocktail that you wanted in the first place? (I used to work for one of the major sporting goods manufacturers, and loved to bug the crap out of all the sportsmen there!)

Really - I am NOT a golfer. Not even a wannabee. I do, however, often like to watch accomplished players compete. I understand the 3-dimensional geometry and physics that seems to be necessary in the game, but I have never had the patience to try to learn it myself. I think it is good, though, that you as a heart patient, have something that you want dearly to get back to after recovery. It seems that people who have these goals more often achieve them.

 

[clay_from_nj]

The only time I've even been interested in watching golf was the Murray brothers' TV documentary on the Golf Channel. That was entertaining.

It turns out, I think, that this was originally aired on Comedy Central.

 

[Alexthegolfer]

mcsf - with a short story of your experience you provided great comfort to me, and its something i've verbalized to people more than once in the past few days, "this dude said knee surgery was WORSE! Yes!!" - thanks

Maesiejane - Thank you for the welcome, I have already found some comfort 7 years in the waiting room? I can't imagine!

annaaurora - One day at a time is a phrase I keep hearing. It is a logical way to think, but sometimes emotions over take logic. I'm working on it though.


big_L - are you a rap fan? im awfully excited for Eminem's new album, always was a huge fan of his, although I certainly was able to relate to him more when I was an angry youth haha. Thanks for the kind words.

Azzuri - I'm sure your son will love york, the new school the built while I was there is absolutely beautiful. I also thought about the fact that a few of my classmates must of have BAV as well. I am certainly of the mindset of wanting the surgery as soon as possible so I can get on with life, and not have this hanging over my shoulder, knowing that someday it will need to be fixed. I've now met my cardiologist twice, the first time in his office and the 2nd time was today at the hospital for a TEE. (esaphaegolicgical echocardiogram) I KNOW I didn't spell that right, I'm sure you all will be able to tell what I meant. thanks for the note about the meeting at Lurie Childrens, maybe me and my dad will check that out.

AZ Don - I'm glad to hear that open heart surgery was also not so overwhelming for you when it happened. It certainly is starting to seem like something that is far worse in theory than in practice. I have the worst thoughts in my mind of a horribly difficult recovery, but the more I hear the less that sounds realistic.

Epstns ( Steve) - I definitely will not be taking the attitude of doing nothing and letting it go. I'm so far on the other side of that that I want the surgery immediately even if the cardiologists recommend waiting. I am glad to hear how much your life has improved post surgery. I can't imagine 9 years in the waiting room.

Dwhist - an elmhurst meeting would be good, or a dupage county one, or just meet local and anyone from the board where ever they are from could come if they liked. it would certainly be an interesting experience.

JYG - I'm gonna hold you to that promise. I can say that after my first cardiologist appointment tuesday and my TEE scan today at the hospital, wednesday and thursday were far less anxious days for me than the previous week or so. The thing that is making me the most anxious is when I am feeling overly tired or overly weak. At this time last year I was lifting weights everyday. Bench pressing 50 lbs over my body weight, and dead lifting double it. Getting back there seems borderline impossible but I know it isn't. Also, I didn't view your comments as condescending at all or anything even remotely negative. I appreciated them.

clay_from_nj - I am glad to hear how much your life and your lifestyle has improved since your surgery. I am trying to drive it through my head that instead of being the end of my life, this will be the thing that kick starts me to make my life the life that i REALLY WANT IT TO BE.

aliciavicki - i am glad excersizing was able to help you before your surgery. i certainly have cried to and hugged my dad many times since this news broke. i also visited my mother at the cemetary to tell her about it. she passed in 2011. i wish you the best in your upcoming surgery and from what everyone is saying, i'm sure, you'll be fine. i'm not sure if blogging is for me, but i have enjoyed reading the blogs of others and will check yours out.

Rebecca - thank you for the information about AHHNOLD it has surprisingly been very comforting. i mean the guy was the frikken terminator, and then he was the governator.. im glad your heart feels much better since surgery. it is amazing how babies and young children go through tough things and seem unphased.

pellicle - i haven't seen gran torino, but i certainly know about golfers and our tendency to always have some good natured jabs to dish out. i for one want every golfer i play with to play the best golf theyve ever played every time im with them, but you better believe i want to beat them. i can lose and play bad and still have fun, but playing good golf is verrrrry important to me.

Rachel - my sense of humor has always been my strongest suit. (it had to be, cause i dont got the looks! lol) golf is part of the reason i want to have the surgery so soon, i want to be fully recovered and back in top form by next years golf season. i'd love to play with another broken hearted golfer. and i hear michigan has some beautiful courses! it certainly isn't too far!

kimcdougc - again i cant imagine such a long time in the waiting room. im glad to hear your life has improved post surgery, thank you for the the kind words and moral support.

steve - i played a very small amount of golf when i was like 10-11-12, i actually got a hole in one when i was 12 while i was out with my friend and his parents which was pretty exciting. then i didn't play again until 3 years ago when someone asked if i would sub for them at a work league. they ended up never being able to play and i took their spot. since then i've been hooked. ive had unlimited range ball passes for the last 3 years and played an absolute ton. i absolutely love it for a ton of reasons but mainly because you are really competing against your self, trying to improve, it takes so much to succeed at golf. focus, discipline and more. there is also nothing like the feeling of hitting a pure shot off the center of the clubface. when you really smash the ball out there it feels like you didn't even hit it. the other thing about golf is that you are always hoping. i forget what its from but i love the quote, "the only emotion stronger than fear, is hope"


well that was a lot!!!! night yall!

 

[Tdot]

Hey Alex et all, my experience is proceeding like yours with the anxiety. It's been a roller coaster for me. I'm 31 with enlarged root and BAV. I had anxiety at first then it stabilized for a few years so I was able to live on with it in the back if my mind. Had a really good year last year and then found out yesterday that root dilated more and my LV is enlarging. Cue the anxiety again!

I totally get the "I just want to feel normal". I was so hoping that yesterday would not change anything and I could continue feeling normal but this is the cards we were dealt.

The only time I feel normal is being on this forum with you wonderful people keeping the perspective straight and like you said feeding off of everyone's courage and experiences is tremendous. Not to mention my dear wife and little boy who brin me back to earth.

I also use statistics when I'm feeling anxious or have irrational thoughts. Such as chances of dying in a car crash are the same as those for ohs...depending on where you live I guess but that doesn't stop me from getting in my car everyday. We are also more likely to get and die from cancer, not to be bleek here but just saying that's not something I obsess about either.

Anyway my two cents