Just wanted to introduce myself

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strudell

Hello,

My name is Scott and I was recently diagnosed with Aortic Stenosis. I'm 39 years old and on a routine check up with a new physician last month, he discovered that I had a heart murmur.

After a visit to a cardiologist I found that I had severe stenosis of the aortic valve with some regurgitation thrown in for good measure.

Apparently I was born with a congenital heart defect (bicuspid valve) and at some point during my youth I must have had rheumatic fever and wasn't diagnosed. All of the doctors I've seen over the years never noticed the murmur.

So now I'm waiting to see a surgeon to plan my heart operation. Needless to say I'm a bit nervous but more than anything I'm anxious to get this done.

One month ago I was "fine" and ready to plan my Spring and Summer: Vacation with the wife, Fishing trip with buddies, getting the boat out of the garage for some walleye fishing.

I've been reading your posts the past week and I feel grateful for this forum. Now I know that I'm not alone. Hearing that I needed open heart surgery got me to thinking the worst.

I've also decided to keep a blog of my experience. I'm a bit of a nerd, so if you like Battlestar Galactica references, fishing and books, let me know and I will email you the link or post it later. (the name is a bit "different")

Thank you.
 
welcome to your new world, Strudell. All of us understand your feelings. You've found a good place to be when you have questions or need information and support.
 
Hi Scott and welcome to the funny farm.

It's always unnerving when your told you need heart surgery. You sort of get this automatic "I'm doomed" sort of feeling. As you can see from all of us, that's usually not the case.

Read around, ask questions and learn all you can while your here.

again, welcome. :)
 
Welcome to the forum Scott. Besides having the same first name you and I share the same issue with our hearts. I was diagnosed with severe aortic stenosis (bicuspid valve) on 2/14 and had surgery on 2/29. I knew I had a murmer since birth but nobody ever mentioned anything about a bicuspid valve or anything else for that matter.

You will find this forum to be great resource for information, I know its been great for me. Im 6 weeks post-op now and went back to work last week. Its natural to be scared, the thought of OHS freaks everyone out but I will tell you (as will others) that the waiting up until the surgery is worse that the procedure itself.

Best advice I can give you is to find a surgeon your happy with and get your procedure scheduled. The sooner you get it over with the better off your going to be.

Your up in Michigan, have you considered the Cleveland Clinic for your surgery ? They do more heart procedures than any other hospital in the country. Thats where I had mine done and have high praise for them.

One more thing.....Go Bucks !
 
Scott....welcome to the zoo....glad you found us.....I did not have rheumatic fever and my murmur was not found/detected until age 46 and I have regular checkups.....Maybe they cant hear it until it gets to a certain point...not sure......But again welcome...OHS, it is NOT near as bad as you might think
 
Welcome to the VR Community, Scott. Glad you found us. Like you, my heart problem was uncovered when my GP discovered a heart murmur during my annual check-up. Quite the shock as I was otherwise feeling healthy. Best wishes and good luck.
 
Hi, Scott.
I've got a similar story; I was 49 before a heart murmur was detected and I learned I had aortic stenosis.
I hung around this place for a year before having replacement, and basically drove everyone to distraction with my comments and questions. :eek:
I still drive everyone to distraction on occasion, but now I ask fewer questions but answer more.;)
I think you've come to the right place. It takes some time to adjust your head around the sudden shock of hearing you will need a valve replaced, but you will feel better with a little time.
 
Hi Scott - Welcome to the site; glad you found it. Take care and post again :) .
 
Hi Scott. Welcome to the community! You have found the BEST resource for pre-surgery and post-surgery information that you could find! I'm blessed to have found this forum about 2 months before surgery (had a bicuspid aortic valve as well). I think we all feel the same way after being told that we'd need OHS...utter shock at first. But, I have found that if you keep as positive an attitude as possible and try to learn as much as you can before surgery, it's not nearly as bad as you think post surgery. I'm almost 9 weeks post op and I feel fantastic. I'm fairly young as well...just turned 34 years old yesterday. Since you've found this site, you've already got a head start. I wish you nothing but the best and stay in touch with the forum. Ask all the questions that you can...

Take care...
 
Welcome to the site. There are people here with lots of knowledge (I'm not one of them) and are willing to share their experiences. Lots of support and lots of laughs.

I am 11 weeks post op AVR and doing well.

Again Welcome
Earline
 
Welcome to the neighborhood.

I know how you feel about finding out. I was in the back yard splitting firewood with a heavy maul when my wife called me in to answer the phone. The doctor told me that I had aortic stenosis, and I would need to have heart surgery eventually. I went out and finished the splitting afterwards, but it really didn't feel the same at all.

This site brings a great deal of information and understanfing to the subject of heart valve issues. I hate hearing it referred to as "heart valve disease," as in may cases, it can be completely repaired, like a broken arm (assuming you ignore the part where you have the open heart surgery). There are people here who will understand exactly how you feel, in terms of the frustrations, the aloneness (even your loved ones can only stand hearing about this for so long), the confusion about medical terms and options, and even the occasional bouts of terror.

At the risk of losing any warm, fuzzy feeilings, a question and a couple of thoughts...

I'm interested to know how they determined that you also had rheumatic fever as a child, or if it was just assumed. A bicuspid valve doesn't need added rheumatic fever to develop into the issues you have now. When one of the causes is rheumatic fever, it often involves other valves over time as well as the aortic.

At some point, you should have testing for any aortic enlargement, to be sure that the issue is limited to the valve, and isn't dragging any potential aneurysm baggage with it.

Best wishes,
 
strudell said:
I must have had rheumatic fever and wasn't diagnosed. All of the doctors I've seen over the years never noticed the murmur.
Click to expand...

Well Hello there Scott and Welcome :)

Your is similar to mine, only difference is that it was my Mitral Valve that "blew" and was replaced with a mechanical 7 days after being told I needed surgery. So your definitely not alone on feeling shock and dismayed about the diagnoses.

We are all hear to answer your questions, so don't be shy.
 
Thank you all for the kind words of support. My wife and I appreciate it.

My cardiologist said that my aortic valve shows signs of scaring typical with rheumatic fever. I think my Mitral valve also shows some minor signs. When I was younger, I did have a period where I had severe fevers, but it was attributed to my tonsils. When I had them removed, the fevers stopped.

I am going to interview three surgeons to find out different opinions on OHS, but for now I am probably going to go with Henry Ford Health System. I work for the hospital and know the surgeons.

My next appointment is May 6th, but I'm on a wait list to get an earlier appointment should there be a cancellation.

I'm very grateful to my doctor for finding this. The valve is at .9 now so who know what would have happened a year from now.
 
Welcome Scott,

Before you interview the surgeons, I recommend that you read the thread entitled "aneurism" and it's sequell by the same writer.

BAV is often associated with Connective Tissue Disorder(s) which can present as aneurism(s) in the Aorta and Root. Even Brain aneurism(s) have a higher incidence in BAV patients than the general population.

Because of the above, I would recommend that you seek out a Surgeon who specializes in, or at least has considerable experience with, Surgery of the Aorta. You would also be wise to have an MRI or CATscan of the chest to visualize the 'entire' aorta since echocardiograms do not do a good job of this.

Before you mentioned Henry Ford, I was going to suggest you also look at Beaumont Hospital in Royal Oak, MI (which one of our members reports as doing more OHS than even the Cleveland Clinic).

'AL Capshaw'
 
Hi Scott -

Welcome to this site. I'm still sort of a newbie here myself. I'm still awaiting surgery for severe aortic stenosis due to a bicuspid valve.

I'm SO glad i found this site of really caring, knowledgeable people and i'm sure you will love it here too. It really helps to chat with people who have been there, done that and find out what it's really like to go through OHS.

Welcome again!!

Dawn-Marie
 
Hi Scott, welcome wanted to wish you luck in finding a good surgeon. You have found the best place to be, for all those questions, take care.
 
Welcome, Scott! Be sure to let us know when you have the appt. with the surgeon and a date so we can help you climb this mountain. As you can tell from reading here it is doable and life is very good on the other side!
 
Welcome Strudel

Welcome Strudel

Hey man , I know that things can look dark and grim but trust me brother, it's really not as bad as it seems. Plus you get new parts that work better! Also I thought I would throw it out there , but if you get into any hypnosis, there are some really great c.d.s that have pre op meditation and post op that did wonders for me and they have been tested by the mayo clinic and many ivy league schools. But hey man welcome and cant wait to chat with you over the mountain!!!
 
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