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Prairie Heart

HI everyone. I?ve been sliding in out of this site for awhile now. Some 21 years ago while getting my physical for the Canadian Army I was told about the bicuspid aortic valve that I have. I remember the cardiologist saying "don't worry it looks good now, no restrictions, maybe 20, 30, 40, years from now you will need a valve replacement or maybe never". Good advice. But just over a month ago during my 3 yr annual checkup I slipped into mild to moderate bicuspid aortic stenosis (AVA 1.37, mean gradient 26.4, velocity 2.57, now moderate regurg). I was holding out to be the one who never had to have surgery, but it looks like the slow march to OR is starting to take place. That first week of knowing that my heart values had significant change from last time has put me into a tailspin for awhile. I'm a registered nurse and very good at researching ever possible bit of information out there (mostly not info I needed to know).When I was younger it did not seem to bother me at all (joys of youth), but now my wife and I have 3 small kids (10,5,2) and the worst case gets played out in my head over and over again( I was lucky enough to get extra life insurance when our second was born with the help of my cardiologist, some relief there). I have calmed down now. It is nice to read about everyone?s experience and it has great value to us and people like me. I did a master?s degree in nursing about men with prostate cancer and during an interview with an older gentleman he said when he was diagnosed with cancer that after a few weeks he stopped saying ?why me? and said ?why not me?. I remember that now and his explanation was that he was given a reminder to enjoy life and slow it down, connect with family and friends. His cancer had spread after his initial treatment when I had talked to him, he was so right. I?ve been given my reminder. I hope to stop by here now once in awhile and maybe a few updates. My new family Doc wants me to see another Cardiologist in our city who really trusts and feels would give us another good look at where I?m at. So, until later. Darren
 
Hi Darren and welcome to the funny farm. It's terrifying to think of, even if you have to have it done again, but the odds of survival play highly in your favor. In todays medical world, it's nearly perfected, but as you know, nothing is perfect. You may well hold quite a while where you are now, but nice to see your looking for answers early on.
 
Welcome, Darren.

OHS is scary but I think you will end up finding that the imagining ends up being much worse than the actual experience. Good to hear you are doing your homework ahead of time and this site is the best for that or just for simple "handholding".
 
Welcome to the VR community, Darren. Glad you found us. OHS is no picnic, but it wasn't nearly as bad as my worse fears were. You'll find lots of experience and insights here. Best wishes.
 
I was 31, had two young sons (6,8), unemployed with a brand new BS degree and $10000 in life insurance when my aortic valve was implanted. My wife would have "been in a world of hurt" had the surgery not been successful. When my valve was implanted in 1967, the life expectancy for a male born in 1936 was age 73. Having had my 71st birthday recently, I am right on track. Unfortenately for me, I spent a number of years trying to answer the "why me" questions. That was a TOTAL WASTE OF TIME.

I try to follow medical instructions, at least most of the time, although my docs would be very annoyed if they knew of some of the stunts I've pulled over the years. I do pretty much whatever I want to do including golf (walk 9 holes but ride 18 holes), fish , workout at YMCA and travel.

There is a simple creed that I finally learned to live by, that I apply each day...."God, grant me the SERENITY to ACCEPT the things I cannot change, the COURAGE to CHANGE the things I can and the WISDOM to KNOW the difference.
 
Welcome

Welcome

Hi Darren,

Welcome!

Until recently, I had dodged doctors for twenty-seven years after a visit with a cardiologist when I was twenty-four. I have to admit that I did the "why me thing" for about a year. After a year of feeling sorry for myself I changed my attitude. Mentally, I simply blocked any thoughts or considerations of a bad aortic valve. I never had any symptoms or encountered any restrictions on activities. Unfortunately, part of my attitude involved stupidity because I stopped seeing doctors to have any monitoring done.

This situation changed a few months ago when circumstances placed me in the ER for a cut finger and the ER doc made such a fuss over my heart murmur that I fially decided to visit with a cardiologist. What followed seemed like a quick dash to have an aortic aneurysm repaired and AVR surgery.

No way around it, OHS is scary, but the alternative for folks like us really is not a positive option either. You'll see good advice often from the folks who post on this board. Get yourself the best surgeon you can find, ask lots of questions to help your mental state, and build a good support network. Odds are in your favor that you'll come out on the other side of this and be just fine.

-Philip
 
Hi Darren,

Yea ... For twelve years, this darn valve was a quirky bit of trivia for me ... and then comes the day when somebody says, "it's time for surgery." I wasn't emotionally prepared, and I, like you, had some pretty serious anxiety. As a husband and a father of an amazing two-year-old, I know what you are goin' through.

The good news for me, was that surgery came about 10 days after those words were first uttered.

I woke up 45 minutes after the surgery, gave my wife a thumbs up and was back to cracking jokes. In the end, while it isn't without risks, I had to really twist stuff to go into the surgery without EXTREME optimism.

Tom
 
Welcome Darren to the Waiting Room! Sorry that you have to join us here but glad that you found VR.com if you know what I mean. Hearing those scary words that you will need OHS really does make you stop in your tracks but you will find that being able to stop in here and get answers and encouragement is a lifesaver. I wish you well.
 
Welcome Darren!

I know how you feel, I got 35 years out of my leaky valve and here I am at 3 months post surgery feeling great again! The odds are in your favor, bad things happen to good people all the time and this just happens to be curable! You'll get a new lease on life & meet a lot of nice people along the way. It's not all bad. Find the silver lining and hold on to it, you'll want a positive attitude.

Waiting is the hardest part, take care.

Ruth
 
Thanks

Thanks

Thanks everyone for the welcome. I hope all of the best for you. I met with my Cardiologist yesterday. We discussed Timeline for potential surgery (they don't like those questions). He thought 10 years from now, but then said maybe sooner maybe later. My new GP has a referral out to another cardiologist that he likes and trusts so we'll get a second opinion. The main thing it appears nothing immanent for treatment. We discussed a beta blocker, low dose for the slight enlargement of the left ventricle-he didn?t think from the literature that a beta blocker was conclusively supported for my problems. But he said it is used this way on occasions based on what they believe to be the underlying principles of a beta blocker and how in theory it could help me. Anyways, I?ll try a low dose and see how it goes.

Bye for now.
D
 
Hi Darren,

I'm glad you found us! I'm waiting too. I'm taking the advice I have received from this website to find a surgeon I'm comfortable with in case I need one. Please keep in touch with us!
 
Having had surgery as a child (spent 5th birthday in hospital for open heart surgery) I basically quit going to see anyone dealing with my heart after I turned 19 and was on my own. That was till last year when in February I told my wife to set up an appointment and not to let me talk her out of it. I knew it was time for something more to be done.
So when the cardiologist told me I needed surgery and within the next 6 months I was not surprised at all. The anuerysm was news to me, but I was told when I was young I would probably need my valve replaced by the time I was 35, and I was 52 when this took place.
I spent a lifetime dealing with limitations put on me by doctors. I loved baseball but they would not let me play it in highschool. So I took up golf which they said was ok. I have never looked at anything in my life as a problem, if a road block came up I found a differnt avenue that was just as rewarding.
My best friend died when I was in 7th grade, from lung cancer. Every day I wake up is a good day. It is scary, sure, but its getting almost routine as can be witnessed by all the people here who have gone through this.
It is better than the alternative, so never wonder why you, just remember that you get a chance at a tomorrow that might not have been.
 
me too

me too

hi my name is mary and like lots of others im "waiting" and this is my first post. My G.P. noticed a murmur about 7 years ago and gave me a referral to a cardio but i didn't go because i thought i knew best.I had had no symptoms (i thought i was getting out of breath because i was no longer as fit as i used to be) I finally went to the cardio 18 months ago and had an echo done and was told i would need a valve replacement within 5 years and to come back in 12 months. On my second visit the valve had deteriorated more, so im now on 6 monthly visits. My next visit is next week and i find myself thinking about it every waking moment. I found this site thanks to adam picks book, its a great comfort to know i'm not alone and look forward to being able to get answers to my questions thanks
 
Welcome Darren and Aussie Girl. Ask away and the people here will help you in ways you wouldn't imagine. I found this site while I was in the waiting and boy am I glad I did. I am now 11 weeks post-op and felt I was very prepared going into surgery thanks to everyone here. Stick with us and we will help you along your way through this!
 
aussie girl said:
hi my name is mary and like lots of others im "waiting" and this is my first post. My G.P. noticed a murmur about 7 years ago and gave me a referral to a cardio but i didn't go because i thought i knew best.I had had no symptoms (i thought i was getting out of breath because i was no longer as fit as i used to be) I finally went to the cardio 18 months ago and had an echo done and was told i would need a valve replacement within 5 years and to come back in 12 months. On my second visit the valve had deteriorated more, so im now on 6 monthly visits. My next visit is next week and i find myself thinking about it every waking moment. I found this site thanks to adam picks book, its a great comfort to know i'm not alone and look forward to being able to get answers to my questions thanks
Click to expand...

Hi Mary, Just wanted to say welcome to the site. I am also on 6 month cardio visits with a valve replacement due in the next couple of years. Good luck with the visit to the cardio next week - let us know how it goes. This is a fabulous site - make sure you ask any questions you have - someone will be sure to be able to answer them - Cheers Jeanne
 
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