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Robb Wilder

VR.org Supporter
Supporting Member
Joined
Jun 16, 2010
Messages
198
Location
Fort lauderdale Florida
Hello,

I was born with aortic stenosis. I have been in "the waiting room all my life. I have been really bad about following up with a cardiologist. In hindsight, I've felt it for the past six months but recently I could tell things were changing. I got an email from my stepmom saying the only thing my dad wanted for fathers day was a cardiologist visit.

I decided to call Cleveland clinic Weston and made an appointment. I chose it because I work relatively close and would eliminate excuses for follow up. I went to see him on june 1st. He did an EKG and listened to my heart. He scheduled me for an echo the following Friday saying it would confirm what he was hearing. I went in for it and after the tech left quickly while I was dressing and in walked the doctor. Made my heart drop but he said he was going to work on this as a priority and get back to me.

The next day saturday I got a call from him. He first said that my stenosis was severe that I was definetly bicuspid or possibly single cuspid. He said there was calcification of the valve. He then told me of my aortic anyurism and that he wanted to order a ct with contrast. They would call me from his office Monday to schedule the ct and then on Friday a meeting with him and a surgeon. He told me no heavy lifting over ten pounds and no strenous exercise.

On Monday, the office called and scheduled the ct for Wednesday and the consult for Friday afternoon. I posted this on my facebook to update my friends. An old friend who I didn't know was a perfusionist messages me saying that she may not be in the area anymore that she would check things out for me on references on the surgeon and hospital. She called back that night and said let's find you another surgeon. My wife also knew an anstiesist and she check and confirmed my friends feelings.

Now that my wife was in a full tizzy she called a friend who got me into see the chief cardiovascular of the memorial group. I went for my ct and Cleveland. I was able to get my cd from the ct and my echo results. I dropped them off at the doctors office and was told that doctor was out till Wednesday. We wanted to get in before the Friday appointment. They got us in with another surgeon on thursday the 10th.

We met with dr perryman who happens to be the chief cardio services. One step above the other surgeon who was on vacation. He looked at the film and results. He agreed that surgery was needed. That he wanted a heart cath done first and that he was leaving for England for two weeks. He said to schedule it for anytime after the fourth of July. "whatever fits your schedule..".

So here I am looking for info and just found this group yesterday and it already had answered the majority of my curiosites. I'm joining in because I think this is great. There is so much cookie cutter info out there. As long as I understand everyone Is different I can still take averages in milestones and go with it.

So to sum it up. Heart cath tomorrow and penciled in for July 14th for surgery.
 
Robb,

Welcome to VR forum and thank you for a good posting.

All seems in control and it looks like it was very much time to get it checked, good on you.

You have lot's of reading on VR, that can surely help you with preparation, Let us know if specific questions.

Your upcoming Angiogram test will be telling and good luck with that.

all the best...Gil
 
Robb, welcome to VR. Things seem to be moving pretty quickly for you which is good in that it sounds like you will not spend a long time waiting. If you have been reading here, you know that the tests you've had and are scheduled for are the ones that are used for these diagnoses. I never had a CT Scan but I did have a decade of echo-cardiograms and two heart caths. Hopefully a "simple" valve replacement will move you to recovery soon. Take care.

Larry
 
Hi Robb and welcome to the forum. In a few weeks you will be "fixed". Read thru these forums and ask any question that comes to your mind. There will be someone here that has "been there, done that". Good Luck:thumbup:
 
Thanks everyone. I am on the clock for the 14th of july. As for my numbers I dont know but the doctor said I was almost 6 on the aorta. Glad I didnt procrastinate on this . No build up in the arteries and the heart was still functioning and performing very well. He said once recovered I will feel Great.
 
Hi Robb,

For the number you mention it is may well be the echo estimate of an AVA of .6cm2, from a probable approximate 2.0cm2 optimum....aortic valve when healthy usually opens to 2.cm SQ

you may well be approaching 25% efficiency on aortic valve, which will be confirmed with more precision with the cath test and yes with those numbers operation is imminent
 
Hi Robb,

For the number you mention it is may well be the echo estimate of an AVA of .6cm2, from a probable approximate 2.0cm2 optimum....aortic valve when healthy usually opens to 2.cm SQ

you may well be approaching 25% efficiency on aortic valve, which will be confirmed with more precision with the cath test and yes with those numbers operation is imminent

You might be correct, but If I had to guess, i would think the 6 was a measurement of some part of The aorta, where ever theannuerysm is located.

Robb, I'm very glad you went to get checked when you did. It probably saved your life.
 
Hi Robb,

For the number you mention it is may well be the echo estimate of an AVA of .6cm2, from a probable approximate 2.0cm2 optimum....aortic valve when healthy usually opens to 2.cm SQ

you may well be approaching 25% efficiency on aortic valve, which will be confirmed with more precision with the cath test and yes with those numbers operation is imminent

You might be correct, but If I had to guess, i would think the 6 was a measurement of some part of The aorta, where ever theannuerysm is located.

Robb, I'm very glad you went to get checked when you did. It probably saved your life.

Lynn is correct I was talkin about the Aorta Anyurism. The doc said my Aortic Valve is shot too. Calcified but that the heart muscle itself is still performing well and that all arteries were clear of build up. With the blood tests coming back all with in norms, It seems pretty good. The Aorta and the Valve are no suprise.

Lynn you are absolutely correct. I probably wouldnt be alive very long. I just keep thinking John Ritter. I dont want to say im looking forward to the surgery but I am in a way. Get it over with get recovering and ill be better than before. Im glad I got out of Cleveland CLinic Weston Florida and into the Memorial Regional Hospital system. I feel much more comfortable.

Thanks
 
Hi Robb, I am relieved to see that your having your surgery sooner rather than later. I feel sure you are extremely lucky to have caught this in time. *Thank god for your Dads love for you. Best wishes.
 
Robb, I'm very glad you went to get checked when you did. It probably saved your life.

Robb,

I'm the parent of adult children, and on behalf of your dad--"Thank you!" You probably just gave him the best Father's Day gift ever--more years with his son.

Marcia
 
Hang in there - same situation for me - although I skipped out at 38 and have now been in the waiting room until 43 - I go in this week! glad you joined!
 
Hey Robb, glad to hear you're all scheduled and that you're looking forward to it. I found myself feeling the same way - just wanted to get it over with. I think that's a very health attitude to go into this with. It's going to save your life, so it seems appropriate to be looking forward to it. Although it can definitely be scary until you come into this forum and realize it usually just isn't that big of a deal these days. We are all very fortunate to live in the era we do!

I might have the date wrong, but believe Penny is on 7/13 - a day apart from you. You can adopt her as your OHS buddy ;) A lot of us have had one and I think it helps to go through this at the same time as someone else because you can share experiences with and ask questions of someone that is likely going through very similar things you are, at the same time. Take care, and keep posting! Loved the toilet paper question, lol - I had that same question and I'm sure a lot of others do too, so it's nice to have a thread people can search for now!
 
Welcome Robb

I am farily new here too and waiting for AVR surgery Aug 9. Being new to it all, I have spent a lot of time here and learned a lot. I am sure you will too. It is great to talk to those that have gone before us. Good Luck. I will be reading your posts and keeping you in my thoughts and prayers on July 14.

Pat
 
G'day Rob.
great to hear your booked in and reeady to go. I had surgery at 37, two years ago now. At the time I was stressed out about it all and came across this site. It was a great resource and help to me. I hooked up with somone on the site and had discussions with them pre-opp to help me decide which way to go in terms of selecting a valve replacment. Having the opp was the best thing I did. I feel better and it has given me a new perspective on life and the people who matter around me.
Good luck mate I'm sure everything will go well
Tony.
 
you have made your dad's dream come true. wishing you well all the way. you have found the best site there is for information, practical and medical. Welcome
 
Robb,

Since you have a BAV and an Aortic Aneurism, I would encourage you to browse / read appropriate threads in the Bicuspid Aortic Valve and Connective Tissue Disorder Forum.

I would also want to know how many BAV and Aorta Surgeries have been performed by the surgeon(s) you interview.
Aortic Aneurisms are often associated with Connective Tissue Disorders which complicate surgery and sewing of Valves and conduits. I would want to KNOW that the surgeon you select knows how to recognize and deal with Aorta Tissue Disorders.

You comments about CC Weston were interesting and surprising. Have you thought about going to the Main Cleveland Clinic Campus in Ohio? Dr. Svensson is the head of their BAV and CTD unit. I don't know who the Aorta Specialists are in FLA. Dr. Chen at Emory University in Atlanta is often referred to as the "Go To Guy" for Aorta Surgery in the SE USA.

'AL Capshaw'
 

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