Newly Diagnosed, and Scared Spitless!

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Steve if you browse through all the posts on presurgery, you will get some very good ideas. Many people have compiled their lists there. Just a start for you.
 
Steve

Steve

What Nancy said was, of course, good advise. My husband always heard more than what I did. It was easy for my mind to wander. He was the one who heard things the way they were said. I was just looking at the fact thatb I didn't want to go through surgery.My husband was the logical one. I might not have wanted to (who would) but I HAD to. I have had 3 valve repairs and 4 valve replacements in 4 heart surgeries. Good luck to you and please keep us posted. God bless you
 
One more thing to check out

One more thing to check out

Steve,

One other place for you to read are the "Personal Stories" on the Valve Replacement home page. So many of us have written our stories. Many talk about the symptoms or the lack thereof!

You are definitely not alone here. Keep your spirits up.
 
"Don't worry...be happy!"

"Don't worry...be happy!"

I remember the feeling...going from thinking you are perfectly healthy...taking it all for granted, then to having the rug yanked out from under neath you when the doc tells you the real deal.

I always try and put things in perspective. People die everyday from freak things, getting hit by a bus to falling down the stairs. And others live in chronic pain and are truly miserable.

We are all alive and typing away on this site. No one knows for how long but as long as we are here you might as well.......

"Don't worry...be happy!"
 
Hello Steve

Welcome to a wonderful place---the site, not the disease!!! Everyone here is knowledgeable, helpful, and supportive. My husband, Tyce, had AVR surgery this past June. Right now he is cleaning out the fireplace, dumping ashes and putting out salt for our iced walkway. Wegetable????, I don't think so, but definitely my favorite!!

Tyce was monitored for about 3 years prior to his surgery. Twice yearly they did an echo and we knew the opening was calcifying. It wasn't until he couldn't get to sleep (for about a week or two--and extremely unlike him) that we found out he was in afib. As our cardio said, THAT IS YOUR SIGN that surgery was due.

Everyone is different as to the progression of their disease. Our cardio told Tyce it would be about a year to a year and a half before we would have to consider surgery and it turned out to be about 9 months.

Please look at my thread in presurgery---A wife's questions.....everyone on this list will tell you I was quite the basketcase. You can pretty much follow everything that happened to us through those threads, if you're interested.

I guess the most important thing I can say, retrospectively, is that there's no need to panic---easier said than done, but true nonetheless. All of the advice you've been given has been excellent, especially writing down your questions prior to your visits. Remember,too, that this is just as big an issue with your family, if not bigger, than it is with you. You will all go through many different emotions. Please feel free to have your wife contact me or anyone else on this list if she has issues.....we are ALL here to help you.

I wish you the very best in your journey.....this is a wonderful group with lots and lots of sound advice and love to share.

Evelyn
 
Hello Steve

Welcome to a wonderful place---the site, not the disease!!! Everyone here is knowledgeable, helpful, and supportive. My husband, Tyce, had AVR surgery this past June. Right now he is cleaning out the fireplace, dumping ashes and putting out salt for our iced walkway. Wegetable????, I don't think so, but definitely my favorite!!

Tyce was monitored for about 3 years prior to his surgery. Twice yearly they did an echo and we knew the opening was calcifying. It wasn't until he couldn't get to sleep (for about a week or two--and extremely unlike him) that we found out he was in afib. As our cardio said, THAT IS YOUR SIGN that surgery was due.

Everyone is different as to the progression of their disease. Our cardio told Tyce it would be about a year to a year and a half before we would have to consider surgery and it turned out to be about 9 months.

Please look at my thread in presurgery---A wife's questions.....everyone on this list will tell you I was quite the basketcase. You can pretty much follow everything that happened to us through those threads, if you're interested.

I guess the most important thing I can say, retrospectively, is that there's no need to panic---easier said than done, but true nonetheless. All of the advice you've been given has been excellent, especially writing down your questions prior to your visits. Remember,too, that this is just as big an issue with your family, if not bigger, than it is with you. You will all go through many different emotions. Please feel free to have your wife contact me or anyone else on this list if she has issues.....we are ALL here to help you.

I wish you the very best in your journey.....this is a wonderful group with lots and lots of sound advice and love to share.

Evelyn
 
Steve,

I went in for a simple physical two years ago and my doctor discovered a murmer. I was 36 yrs old at the time and was somewhat active. My reaction was a lot like yours. I always took pride that I had a healthy heart and good blood pressure.

Two weeks later, I got an appointment for an echo. Results: Mild to moderate Stenosis and moderate regurgitation. My cardiologist said that "it's not a matter of if, it's a matter of when. It is my job to advise you on when." He said the Stenosis and the size of the left ventrical was what we need to pay attention to. When the heart muscle increases in size, it is a sign that it is compensating too much and I would need surgery. What a wake up call! He also stated that this is FIXABLE with a lot of options and that technology is improving every year.

I have had two checkups since then and the last showed an improvement in stenosis and reduction in the left ventrical size. Everything improved except for the regurgitation which went from moderate to moderate/severe.

VERY IMPORTANT: Ask your cardialogist to prescribe some form of vascular dialator, i.e. low dose of high blood pressure medicine. This will hopefully dialate the blood vessels to improve the stenosis over time and relieve the work on the left ventrical.

I probably had this since I was a kid since I had several occurances of strept throught. I too showed no signs other than being out of shape. I still snow skiing, run and bike and have no problems while working out. My doctor simply said as long as I don't show any symptoms and the heart muscle remains the same size, I would be OK. However, everytime I see him, he reminds me that I will need an operation sometime in the next 20 years.

I found this site extremely useful and was able to get a lot of great information from the experience of others. The people hear are very encouraging and you will find that there are a lot worse things to have in life. I have found interesting items and brought it to my cardiologist's attention and he is always surprised about the useful information I pick up. Good doctors like to work with informed patients.

My wife's uncle died on Dec. 24th this year from a massive heart attack at the age of 58, probably an annureism since he had very high blood pressure. If only he got an echo, they may have caught it in time!

My advice, stay informed by reading this site so that when you do need to make a decision, you will have the best information to make the right decision for YOU.

Regards,
Jim
 
Again, my thanks to all for sharing the vast knowledge base here.

I find myself among the "watchful waiting" group, as my cardiologist feels that "it isn't serious until it is serious." He also indicates that when the time comes, it will not be subtle -- symptoms will be obvious. In the meantime, we are scheduling regular follow-up visits and periodic echo's to be sure nothing goes bad without warning.

I will stay in close touch, to learn as much as I can, and (truthfully speaking) to share the moral and emotional support of this family as I know that some day I will travel the path up the mountain. At the present time, I am out on the plains gazing at that mountain. It is still unclear, and a bit scary, but since the distance is not measurable my unease remains vague. In the months and years to come, I believe that the support of this group and the support of He Who Watches Us will make all the difference in the world.

God bless us, everyone.
 
Steve,

I refer you to my first post in this thread. Regardless of what the doc said, people do not alway manifest symptoms. Most cases some symptoms present and that is the signal to have the surgery. But, in my case, right up till the day of surgery I NEVER had symptoms. Sudden death is one mode of failure with this defect. Over exertion at the severe stage can kill with no warning. I had slight wall thickening and elevated pressure gradient but a normal ejection fraction at 55%.

On August 20, 2002 just 3 weeks before my surgery, I helped move my son into a second story apartment. In Florida heat and humidity everyone was tired and short of breath. I was quite careful not to get too exerted and for the next few weeks limited my walks, exercise, etc. I am convinced after talking with the surgeon that my days were numbered and the surgery did in fact save my life. Now had I gone on I might have developed symptoms but with a .61 sq cm opening, I was not willing to risk it. That is only 30% of nomal. I asked the echo girl the other day what the smallest she had ever calculated. She told me .3 sq cm, but this guy had symptoms and big time thickening of the wall of the left ventricle.

Do keep an eye on it and follow the doctor's instructions. BTW did he suggest antibiotics before any invasive medical or dental procedures, including teeth cleaning? It is normally recommended I believe.

My best wishes to you. The waiting will be the hardest part, believe me. The surgery and recovery were an anticlimax to the stress of that waitin and knowing it was when, not if.

Keep visiting this site it is populated with the best people I have ever known. Just fantastic, giving, caring, sharing.

Bill
 
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This is another thing that happens....

This is another thing that happens....

Hey Steve,

...... well, it did to me anyway. The symptoms come on so very slowly that you don?t notice them. I was seeing my PCP on a regular basis, doing echos as she prescribed them, etc. She would always ask me if I was still doing all the things I?d always done.. you know like carrying in groceries, water skiing, camping, hiking, whatever. I was. So long story short....... by the time she decided I should see a cardio..... He said my heart wouldn?t survive the surgery!! Sooooo.... I?m just telling you to stay aware, get educated and ask your cardio a bizillion questions.

Once I was over the initial shock.... the waiting for surgery was the hardest part for me. It?s all scary stuff and really good to have the friends you will make here at vr.com. It?s amazing how close you can become to people you have never met face to face. I just love my vr.com family. :)
 
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