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bigsky25

I am learning my way around this site. My name is Ed and i am going to have the ross procedure done soon. I have aortic stenosis and insufficency. I have known about it for 12 years. doctors always told me i would probably need aortic valve replacement. well they say the time is near within the next few months. my last echo in february showed a significant change in my heart my left ventricle is starting to enlarge and my valve leakage is getting worse. I am starting to get nervous about this. I am not the kind of person to get emotional about things but this is starting to get to me. I am 34 and didn't expect this this soon because there had been so little change for so long. the doctors say i have a very strong heart but i need to do this now because it starting to enlarge and will cause permant damage to my heart mucsle Other than being constantly tired and some light headedness sometimes i feel as well as can be expected. well sorry i typed so much but i needed to tell people who have been there and maybe can offer words of advice.
 
Welcome to the family Ed.

We all know what your feeling and the fears you have, so your right in the proper group of people.

I had a ruptured ascending aortic aneurysm in 95. When they put me back together, saving my life was the priority, not doing what really needed done at the time. Immediately after surgery, I had and was discharged with a +2 regurgitation. I was 33 when that happened. I'm now 40 and my regurg is so bad (+4) that I'll be having surgery this Monday. The plan is to use the St.Jude mechanical valve with a graft attached. When my aneurysm blew, it shredded the aortic root pretty badly, this is what's going to make this surgery interesting.

My left ventricle is enlarging at an alarming rate. If this is left alone much longer, it will become unrepairable. I think you can see the significance of having the surgery as soon as possible if that's what you've been told.

Read around the forums. There are many people experienced and experiencing everything that can possibly run through your mind. We are unique to the processes, so welcome and to the family. :)
 
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Hi big sky,

Welcome to the site. There are several here that have had the Ross Procedure and can probably provide you with some answers to your questions. Ben Smith is one that you may want to write an e-mail to. He is young and active and is now at his 2 yr anniversary since his surgery. He has been very busy lately, so you may want to click onto members and write him a private E-mail so that he is sure to get it.

I hope you find a new home here and many friends to help you through this stressful time.

Wishing you good health,

Rob
 
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Hi Ed-
So, I had the Ross Procedure last year (July 12) about a month before my 34 birthday. I had known about my AS/AI since age 4.
I spent many years hearing "Looks good, see you in a year." And then March 2001 the cardiologist said it was time to get it done ( many changes on the echo). I freaked for about 36 hours and then my mom reminded me that the pediatric cardiologist said I'd be in my mid-30's when I'd need the surgery. So it's normal to feel upset. But, the good side is that after the surgery, you will so much better than you do right now. My only symptom was fatigue. In retrospect, I realized just how fatigued I was. The onset is/was so gradual.

My RP is doing great. I see the cardio and the surgeon in August for follow ups and my first post-op echo. I have had no problems.

The RP is scary and big, but not nearly as bad as you think it is right now. The main thing is to get a surgeon who knows what he/she is doing. The RP is so techincally demanding that you don't want a first-timer or a surgical resident (fellow) messing around with it.

Please let me know if you have other questions. I am sure the few other RPers on here will weigh in. I know it seems overwhelming but here is some advice that helped me get thru. You will feel so much better after the surgery. And, think about all those fat, slobby, old geezers who smoked, ate fat greasy foods for 40 years and cruise thru by-pass surgery as if it were nothing. You are 34 and will do the same.

-Mara
 
Go #97!

Go #97!

Hi Ed,

I'd like to also welcome you to this site.

I notice you're a Nascar fan. We are too. Kurt Busch is my wife's cousin. We've never been to a big race, but we've been to his parents home in Las Vegas before Roush signed Kurt on.

Hang in there and touch base (or should I say make a pit-stop?) here as often as you like.

Cheers!
 
Hi Ed-

You've found a terrific site. Everyone here "gets" it as far as valves and other heart problems go.

There is so much information here that will take a long time to sort through it, but I bet you've been taking a good look at the different categories and threads.

I'm not the patient here, my husband is and he's been through a ton of stuff. He's had 3 valve surgeries, 2 lung surgeries, a pacemaker and a bazillion other serious things. He's 71 years old and still chugging along.

You'll be fine with your surgery and will have some peace of mind when all the healing is done.

I hope you will utilize this site to its full potential and ask many questions. We love to share with "family" members. So please drop in often and don't be shy.
 
hi ed!
welcome to this wonderful site; it's a great place and everyone is so supportive and caring.
my husband, joey, had his ross procedure about 10 months ago at the age of 49 (a young 49).
as you may have read here, it often takes up to a full year for folks to really feel like themselves (although recovery varies among patients). well, joey is feeling amazing. he really turned the corner about a month ago and is so thrilled to be doing push-ups and lifting weights he was never allowed to do prior to his surgery.
he was diagnosed with aortic stenosis and insufficiency at about age 12 and was told that it should be checked annually and we'll take it from there. when i met joey 20 yrs ago, he told me that he would someday need this surgery. we took it a year at a time (religiously checking in with the cardio). we were so fortunate to have bought so many years before he needed the surgery!. last summer though, he became very short of breath and tired. he would still push himself and go for a run (instead of a walk) with me, but the catherization finally showed that he needed the surgery asap.
we shopped a bit and jointly decided on the ross procedure.
we are so thankful for each new day and enjoy every minute we have as a couple, as a family, in every way.
joey is turning 50 this sunday and i am having several celebrations for him (celebrating life). so, life can be a big test, but when it's good, it is truly great.
please feel free to email me or call me at home: 914-698-4066. mara was so helpful to us prior to joey's surgery. she really helped put us at ease (we called and spoke to her and asked a zillion questions).
do you have a date yet? please keep us posted.
stay well, sylvia
 
When you say 'getting to you' you probably

When you say 'getting to you' you probably

are like many who haven't had many symptoms that give you a 'sense of doom'.

That feeling, unlike any other symptom you can name, will cure you of any anxiety and fear you might have to proceed. (you will still have some, but far less than would if you had serious symptoms).

Having had two bouts with rheumatic fever, once as a child damaging the Mitral Valve and then a second one as a strappy, skinny 13 year old, that nearly finished me and damaged the aortic valve, I lived with two faulty valves for nearly 40 plus years.

One day in 1999 as I was finished working in the yard, I found I couldn't breathe in, catch may breath.

That led to some panic, a next day doctor's appointment then the full gamut of testing culminating in a Catheterization (the Coronary arteries look great in basic black) and a report advising immediate AV repacement from 3 cardiologists. ( a .25 mg daily dosage of Xanax)

You don't want to experience Congestive heart failure if you can avoid it. Mild CHF is no reason to panic as I did, but no one ever told me it comes in degrees, and mine was just the overworked heart telling me, 'it's time'.

What it DID do, the CHF, is cure me of any hesitation to get the surgery. I figured rightly I would live with the surgery and likely die without it.

That, in turn, led to the the sense of doom, and gave me all the courage I needed to sustain me thru the 9 months of investigation and choosing.

I considered surgery as a relief; the anticipation of what would happen without it, a reason for panic and anxiety.

You can do this. The surgery itself, in the right hands, will be successful 99% of the times it is done, and easier than you think.

The recovery, getting well again, is a bit more problematic and requires some patience.

Those of us with symptoms, the more serious, the more a functioning new valve is appreciated.

For those without symptoms, the 'preventive' nature of the 'benefits' of surgery is a bit lost since there is only now a beginning to reduced activities. The surgery is not as dramatic in results considering how you feel post-op vs pre-op. It may seem not worth it. But mostly uninterrupted activity within 6 weeks of discharge, will be worth it in the end.

I wish when I as 34 the advancements and technology were available that are here today.

Managing a heart condition by gradually cutting one activity after another, (first skiing had to go, then even mild weight lifting, and then hiking, then household remodeling involving heavy objects and enduracne, forget jogging, etc) 'managing' a deteriorating heart, is not a future you would like if it can be corrected now.
 
:cool: hi this is ed i would like to thank everyone that replied to me its nice to know i can talk to people who have been through this. thanks for welcoming me and for all the words of advice.
 
Hi Ed,
I was also 34 and had a 2 1/2 yr old daughter and husband when I had my first AVR ( porcine).
The weeks before the surgery I was very concerned that I wouldn't make it and my girl wouldn't know her mommy. Thoughts like that are normal, and sure don't make you feel good about the surgery.
However, when I checked into the hospital and after all my family left me I was overcome with a certain calmness and just knew I was going to be fine. All was well and I came thru wonderfully.
When you are young they treat you really nice after surgery, too.
Of course the surgery kicks your butt and that did surprise me, but the recovery goes quickly, and you will feel so much better.
All the best,
Gail
 
Ross' Surgery - Ruptured Aortic Aneurysm

Ross' Surgery - Ruptured Aortic Aneurysm

Ross Y said:
Welcome to the family Ed.

We all know what your feeling and the fears you have, so your right in the proper group of people.

I had a ruptured ascending aortic aneurysm in 95. When they put me back together, saving my life was the priority, not doing what really needed done at the time. Immediately after surgery, I had and was discharged with a +2 regurgitation. I was 33 when that happened. I'm now 40 and my regurg is so bad (+4) that I'll be having surgery this Monday. The plan is to use the St.Jude mechanical valve with a graft attached. When my aneurysm blew, it shredded the aortic root pretty badly, this is what's going to make this surgery interesting.

My left ventricle is enlarging at an alarming rate. If this is left alone much longer, it will become unrepairable. I think you can see the significance of having the surgery as soon as possible if that's what you've been told.

Read around the forums. There are many people experienced and experiencing everything that can possibly run through your mind. We are unique to the processes, so welcome and to the family. :)
 
Surgery yet?

Surgery yet?

Hi Ed, Been awhile since you posted. Have you a date for surgery? Don't tell me I missed it:confused: :confused: I know I am pumped headed...Let us hear from you..we want to be there for you:) Bonnie
 
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