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R

RonT

Hi Everyone,

I've been lurking in this group (that doesn't sound very nice does it) since I found out about my severe aortic stenosis (bicuspid) in the first part of July. I have no symptoms other than afib and getting very tired at the end of the day. I will have the angiogram on November 12th and surgery on the 13th. Looks like I'll have a new and shiny St. Judes so I can click with the best!!!!

I want to thank all you folks in this forum for so much useful information and the words of encouragement to everyone. I am so glad I found this place!!!!!

Ron
 
Hi Ron

Hi Ron

We saw you lurking around this forum and so glad you finally came out of the closet. Welcome aboard and get ready for lots of info. whether you want it or not. We are a chatting bunch of valvers.:D You ask..we answer..Bonnie
 
Welcome,

And Bonnie said it right, don't let anything bother you. Someone has had it in spades and will give you the straight scoop.

I know this place saved me many anxious moments and helped pull me through.

Best of luck

bill
 
By the Way Ron

By the Way Ron

The guy with the phone stuck to his ear in yellow shirt underneath me is my siamese twin..we were unattached at birth but he keeps following under me.:D :D :D Bonnie
 
Hi Ron-

This is a wonderful place, If you've been hanging around for a while, you know how much you can learn here.

I want to wish you the best and hope you will come in often and ask lots of questions. You've got a lot of friends who care about you and your little heart.
 
Hi Granbonny,

I thought you guys kinda looked alike. Now I know why!

Ron
 
Hey, Ron - Bonnie told me she saw you lurking so I checked it out and sure nuff, there you were right around the corner! Not to worry, tho - everybody lurks. Kind of a scary subject to jump right into before you check out the members - but we are nice folks. Welcome and God bless
 
hi ron!
welcome! you must know how wonderful this site is from having peeked in.
please visit with us so we can keep you company until your surgery comes;
sometimes the waiting can be the most difficult part.
glad to have you on board.
stay well, sylvia
 
Hello again Ron,

Has your cardiologist given you anything to control / prevent your A-Fib events? I'm taking a low dose of Toprol XL which seems to prevent irregularities (which return when I'm not taking the medication).

Did you have an Echogram? If so, do you know your effective valve opening area? Typically, most cardiologists recommend surgery once that number reaches 0.8 sq cm or less.

'AL'
 
Hi Al,

Hi Al,

I'm on cardizem (240 CD), atenolol, and caumadin. My doctor tried cardioversion at our small town hospital but that didn't work (nice burns tho). My new cardiologist said that he could get me back to sinus but would have to do it all over after surgery so that's why I've been afibbin' for awhile. I really don't notice it but I get so tired at the end of the day. I think I have been in afib for a lot longer than since June. I just thought the tiredness and sweats was because I was old, fat (I've lost 43 pounds with another 42 to go) and out of shape! Then on the 21st of June, I had a very hard time breathing and went to the emergency room and the rest is history.

My valve area is less than .8 sq cm and my heart is enlarged so it is time for the climb!!!!!

Thanks to all that have responded to my post. I'll be around (lurking) for awhile!!!!!

Ron
 
Hi Ron and welcome.....I'm Evelyn....not the one who had the AVR in June, but the one who does the "talking" for the family.....So glad you found this site....you will be very happy and comfortable with us. This is a wondeful, knowledgeable group who will answer any questions you have. Welcome aboard on the "MOUNTAIN CLIMBING EXPRESS!!" If there's anything we can do to help you, let us know.

Evelyn
 
Hmmm....

with an effective area smaller than 0.8 sq cm and an already enlarged heart, I'm surprixed you aren't in the queue awaiting surgery in the next day or so. Is your surgeon aware of this data? Is your cardiologist not concerned?

If it were me, I would ask my cardio and surgeon if it might be prudent to move up the date for surgery, or at least an explanation why they don't feel a sense of urgency.

'AL'
 
Hi Ron!

Hi Ron!

Welcome to VR.com. I live in Princeton, MN about 30 miles or so from you. I had mitral vavle repair in May, but there's another lady from my church who just joined and has the same problem you do. (Check the thread from Jackie about bicuspid vavle symptoms, you two could compare notes. )
Good luck with your upcoming surgery. Where will it be done, and who's the surgeon? Just curious. Jean
 
Hi Al & Jean,

I'm the one that decided the date of surgery. My doctor and cardiologist are not excited about it but I need the extra time. I have been warned not to do any lifting and such. I know it is probably not the smartest thing to do but I am doing good.

Jean - My surgery will be at Abbott Northwestern. I'm not sure who the surgeon will be yet. I pretty much have faith in all the folks at Abbott and the Minneapolis Heart Institute. My cardiologist is Dr. Lesser. I have read Jackie's thread but I haven't had any symptoms other than tireness.

Ron
 
Ron,
Welcome! I live in Minneapolis, and had my bicuspid aortic valve replaced in June with a SynerGraft homograft. Aabbot is a fine hospital...my son is having an ablation there on Friday (he also had heart valve surgery, just last December).

Anyhow, I know who most of the valve surgeons are here, and I know that Dr. Michael King (he did mine) works out of Aabbot; he has done over 1000 valve replacements, and was trained at Mayo. They don't get any better than him. Also, he did my surgery with a mini-sternotomy, which means a smaller scar and a faster recovery.

Let me know if you have any specific questions about the hospital or surgeons here in the Twin Cities. Also, you can e-mail me and I'll give you a phone number if you'd like to chat.

Best wishes,
--John
P.S. I just looked at your profile, and noticed we are the same age...heck of a way to start your 50's, huh?
 
Last edited:
Hello Ron,

Did you doctors tell you WHY they don't want you doing any heavy lifting or heavy exertion? Did they tell you that the heart can compensate for a closing valve (by pumping harder and creating high pressures within the Left Ventricle) but that PERMANENT DAMAGE can be done to the Heart Muscle after a while?

In my case, I had to wait a month before I could get in to see my referred surgeon. Then I elected to wait 2 months to 'get ready' (finish taxes, write will, power of attorney, medical power of attorney, arrange for after care, etc.) and accomodate the surgeons travel schedule.

Two days before my scheduled surgery, I awoke with chest pains and went to my local ER by ambulance. They held me overnight and sent me via ambulance to the surgeons hospital (100 miles) where I was sent to the CICU 6 hours after admission. They then inserted a baloon pump in my heart through the groin (similar to an angioplasty procedure). Once inside, my surgeon was concerned about the risks of a second valve replacement and made the decision to insert a St. Jude Mechanical Valve for durability reasons instead of the Bovine Pericardial Valve we had agreed upon.

The reason I am telling you this story is that I believe I got there JUST IN TIME. It is entirely possible for your valve disease to reach severe condition with NO external symptoms. It MAY be developing IRREVERSIBLE DAMAGE without you becoming aware of it.

At the very least, I would recommend another echo or TEE to determine your current status. At my last TEE, they were unable to identify the valve leaflets and openings. I was down to a few small holes providing blood to my entire body.

You need to know that once a valve closes over, IT'S ALL OVER.
There are NO SECOND CHANCES. THAT is risk you doctors are concerned about. Even if your valve doesn't close before your surgery date, you can still develop permanent heart muscle damage from compensating for the small openings by pumping harder.

If this message scares you into getting another evaluation (echo / TEE) or moving up your surgery date, it will have achieved it's purpose.

'AL'
 
Please listen to Al, he speaks the truth, unvarnished as it is.

I never took seriously my "mild stenosis" from 1995 til June 2002 when I found out the numbers and it was severe. I never had symptoms but know beyond a reasonable doubt that had I not had this surgery, I would not be here next year at this time. It would have been abrupt and unexpected "Game over, Dude" as the guy says in ALIENS on more than one occasion.

Al was right when he advised me and he is doubtlessly right with his advise to you.

Best

Bill
 
Hi Al & Bill,

I have a call into my cardiologist. Have to wait for the return call. My last echo was less than three months ago.

Thanks for the concern guys!!!!!!

Ron
 
Hi.. i too agree with Al.. like Bill, i never took my bicuspid valve seriously until my health took a quick nose dive.. i had a past infection hit it which didn't help things.. but after seeing my GP the second time she did a ekg and found enlargement.. saw a cardio week later and he admitted me that day.. did not want me out of hospital care.. week later after confirming i no longer had any infection in my system we did the cath and next morning went for the mechanical valve.. originally planned for ross procedure following week, but my heart was too sick to handle it.. i feel better than i have in years..it'll be 4 months post op next week.. it looks like my heart accepted the valve.. but still on meds and trying to wean off if possible.. my point is please do not wait so long to have your surgery - i was very lucky and blessed and now realize just how sick i was and how close i came to not seeing today.. i wish you the best thru all of this and like everyone else here, please do not hesitate to ask any questions.

christine
 
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