I might need AVR

[Igor]

Hello, everybody.
I?m definitely new here and am already starting to appreciate how much I gained from this site just browsing it.

To make the long life story short.
I?m 40 and had multiple rheumatic fevers when was a teenager, had murmurs but have not had any significant symptoms. I?ve had a very active life, including sport activities, such as biking (up to 10 hrs a week), gym and tennis. After my recent too much training, combining weight lifting and biking at the same day I noticed some tiredness and short breath. Went to my doc, then EKG, the Echo in the cardio center ?results were not so good ? severe aortic valve stenosis.
I?ve met the cardio doc who just spent 10 minutes with me. He said that if the next test - heart catheterization confirmed the results of the echo test I would need to do AVR.
Despite the knowledge of the test results I?m feeling fine, except a mild anxiety I picked up recently after all this got discovered and a bit lower then usual blood pressure.
I?m scheduled for a heart catheterization on 4/29/02 and do hope as much as I can that it will be a good test but on another hand am trying to prepare myself that AVR will be needed. I have bunch of questions of course as probably everybody who already went through this and at this moment my concerns are just related to this couple of questions:
- How long does it take to recover after AVR?
- What kind of activities will be allowed after the recovery, another words will I be able to bike or do any kind of sport activities?
- Will I have any kind of social activity restrictions and what kind?
- How to go about the second opinion, does it really needed?
- How and where to select a good cardio surgeon (I?m Tampa bay FL area and would appreciate if somebody recommend anybody here)

Thanks a lot in advance for any reply, suggestions, thoughts or just comments.

 

[Ross]

Hi Igor and welcome to the family

You may want to take a look at the FAQ thread below to help answer some of your questions and I'll try to answer some also.
http://www.valvereplacement.com/faq.htm#after

- How long does it take to recover after AVR? 6 to 8 weeks, possibly longer.

- What kind of activities will be allowed after the recovery, another words will I be able to bike or do any kind of sport activities? It depends on what type of valve they use for replacement. If it's mechanical, you'll be advised to steer clear of contact sports and you'll also be required to take an anticoagulant for life. I think anyone who has had AVR should stay away from contact sports.

- Will I have any kind of social activity restrictions and what kind? The only restriction is whatever you impose on yourself. There really isn't any.

- How to go about the second opinion, does it really needed? Again, depends on your circumstances. It may be as easy as just up and going to another doctor or you may have to have it preauthorized by your insurer. It's your life, so if you feel that a second opinion is needed, don't hesitate to get one. With all the modern testing and methods, second opinions are seldom needed.

- How and where to select a good cardio surgeon (I?m Tampa bay FL area and would appreciate if somebody recommend anybody here) Word of mouth is usually the best way, but I can get you a couple of links to check into.

http://www.bestdoctors.com/en/default.htm

http://www.healthgrades.com/

 

[Nancy]

Hi Igor-

Welcome to the site. You already know how wonderful it is, but in the next long while, you will really appreciate what it has to offer. Your questions will usually be answered swiftly from people who've walked the walk. We try to give an honest and upfront answer without too much sugar coating.

My husband had rheumatic fever as a teen, he's 70 years old now. He's had 3 valve surgeries, plus numerous other surgeries and procedures. He has 2 mechanicals, mitral and aortic, plus had a repair done on the mitral.

He had his first valve surgery in 1977. These surgeries have been a lifesaver for him. He wasn't supposed to live past 50 but here he is. So getting a new valve will make you feel better, and will give you back your normal lifespan. It's a good thing.

How long it takes to recover varies from person to person, and condition to condition. The young'uns who go into it for the first time and in fairly healthy condition, and you sound that way, usually recover the fastest. The sicker you are going into surgery, the longer the recovery.

Being active should be no problem, once the valve situation is corrected, but as Ross mentioned, contact sports should be avoided. There are several cyclists on the website, and otherwise very active people. We seem to have a large group of athletic folks. I'm sure they'll speak up.

Socially, I wouldn't think there would be too many restrictions. You wouldn't want to get roaring drunk, or get into fistfights or do things that would endanger your health. But you wouldn't do that anyway, right?

One of the best ways to find a good surgeon is to ask your cardiologist whom he/she would go to if in the same situation. They will usually steer you in the right direction. Then ask your primary care physician the same question and any other healthcare professional you might know. Also some people here will have some ideas.

I'm wishing you good luck in your research on the subject. The more you know, the better it is for you.

 

[Mara]

Hi Igor-

Here's where I get to make my pitch for the Ross Procedure. If your tests turn out that you need AVR do not panic. (Okay 24 hours of panicking is allowed, but no more.) It will be fine. Then ask your doc about the possibility of the Ross Procedure. An atheltic, young guy like you is probably a good candidate for it, unless you have any other problems, connective tissue disease being the main excluder for the Ross.

- How long does it take to recover after AVR? That all depends on you. Recovery takes 6-8 weeks before you go back to work and feel like yourself. It takes up to one year before the docs will know the effectivness of your AVR (that's what my surgeon said. after a year I'll have what I am getting)

- What kind of activities will be allowed after the recovery, another words will I be able to bike or do any kind of sport activities? YES!!!!! but not immediately after, at least 4 weeks of walking and light exercise. Arnold Schwartzenegger had the Ross and blew his out doing too much too soon! Relax some physicians say the Ross is the surgery for athletes, but lots of world-class bi-athletes and Tri-athletes have mechanicals and kick butt! There are folks on here who are extremely active and athletic and you'd never know they were valve patients. After the surgery you will realize how tired you are right now, even though you don't think you are. Trust us on this one, we've been there. I didn't realize how tired I was even though I knew I was more fatigued than I should have been. Post-op is like a whole new world!

- Will I have any kind of social activity restrictions and what kind? My doc said look both ways when you cross the street and wear your seat belt. You can do anything you did before. If you get a mechanical you might have to watch alcohol consumption. I had the Ross and my cardiologist is my neighbor and he brought me champagne after I got home! Now that I feel better I do way more stuff than I ever did before the surgery. I have a lot more energy. I got married 5 days before my surgery, and there is no trouble there. (hee hee). You'd probably want to stay away from illegal drug use and stuff like that. But, there are no limitations on you whatever!

- How to go about the second opinion, does it really needed? If it makes you happy, do it. I did. No doctor will be offended by your desire to get a second, third, or fourth opinion.

- How and where to select a good cardio surgeon (I?m Tampa bay FL area and would appreciate if somebody recommend anybody here) Start with who your cardio recommends. Then ask any doctor friends you might have, even your family doc who'd they send their spouse, parent or child to. That's a great indicator of who is good. Ask your cardio who he'd go to if it was him. There are folks on here from your area and they will check in and let you know who they used.

Igor, try not too stress yourself. AVR is not a death sentence and does not mean you will be an invalid in a wheelchair. It's big and scary, but not as big and scary as you think. Everyone on this site has been where you are and we are all still around to tell the tale, and plan to be for many, many years. If you need the surgery, you'll be fine, and afterwards you'll realize just how tired and fatigued you are right now, if what the docs say is true.

 

[sylviayasgur]

hi igor!
welcome to this site. i think you will find the people here to be very caring, warm, and helpful in terms of info.
i don't have much to add to what the others said, i think they covered all bases.
there are some folks on here who live in your neck of the woods; i'm sure they'll come forward and make some suggestions.
my husband, joey, feels so good now (7 months post op) that he can actually run 4-5 days in a row!!!!
before his surgery he was feeling very out of breath and not as strong. he now lifts weights, does push ups, etc. none of which he was allowed to do before.
this is a wonderful, life saving surgery and whatever valve you decide on will bethe right one (there really is no wrong choice).
please let us know how the cath goes tomorrow and what they find.
be well, sylvia

 

[Igor]

First of all, I want to thanks all of you for encouraging messages, without it I would be on xanax every two hours J which have never been taking before. This is a wonderful world you guys have created here and it sure is helping a lot of people.
Here I am back from my cath test today. Results are not as great as hoped and not as bad as it might be. The stenosis is actually is not bad as the echo showed earlier but the leakage is substantial. Recommendation from my cardiologist is to have an AVR, so now I am scheduled to see a sergeant in a week from now. Now I have even more questions:
- where to do the surgery, actually if anybody here can suggest anybody in FL or elsewhere ?
- where I can find a hospital/cardio doc ranking?
- Is Ross Procedure something I should be considering for me?

Thanks

Igor

 

[Ross]

Hello Igor

- where I can find a hospital/cardio doc ranking?
www.healthgrades.com

www.bestdoctors.com

Rob had posted these before and I found them useful, you may too. Best Doctors requires a fee, but they give you detailed info on the doctor of your choice. Healthgrades is free, but has limited info. You may also want to take a look at U.S News Rankings.
http://www.usnews.com/usnews/nycu/health/hosptl/tophosp.htm

- Is Ross Procedure something I should be considering for me?

I would advise you to ask your surgeon when you get to see him. I had a Ross done in 95 and I'm now going for full AVR, as my Ross is shot. I got 6-7 years out of mine.

Someone should be around from your area to help a bit with hospital choices. I'm from the North and Cleveland Clinic is 65 miles away from me. A little bit farther for you.

Glad to hear the results weren't as terrible as you were lead to believe at first. I'll check back on this thread from time to time.

 

[Mara]

Igor
Ross Y is right. Only your surgeon can tell if the Ross procedure (RP) is the right operation for you.
I am very happy with mine, so far. I know Ross and Joey are having some troubles, and that makes me sad. I feel very lucky in doing so well.

My understanding of the RP is that it works well in patients under 50 who have no other health problems and are in good health, and want to maintain an active lifestyle. When I researched the RP after my cardio and surgeon suggested it I found a lot of encouraging information that helped me make the choice.

That said, not everyone is a candidate for the RP. It is a long (mine was 7 hours) surgery and very technically demanding on the surgeon.

The majority of people on this website have not had the RP. My personal feeling was that I did not want a mechanical valve because I did not want to go on coumadin (blood thinners) for the rest of my life. In fact, my gynecologist advised me to not get a mechanical valve. Luckily, this is not an issue for you. The upside of a mechanical is that you will wear out before it does. They are supposed to last forever. Yet, no one can predict how long a valve replacement will last. We all hope for forever, but re-operation is a very real possibility.

Any valve you choose will be the right one for you as long as you make an informed decision along with your surgeon and cardio.

I guess the point is we can offer our own opinions and experience but only you and your doctors can make the right choice for you.

Good Luck
-Mara

 

[MarkU]

Hi Igor,
I'm just an hour down I-75 in Sarasota. I had my AVR in December of 2000, due to a congenital biscuspid aortic valve. I had always known about it, but didn't have any symptoms until about six months before my surgery (I was 46 at the time).
I was always active in sports my entire life - played football, wrestled, swam and ran track in high school, and wrestled and played tennis in college. I've been a weight-lifter/bodybuilder since 8th grade.
I knew something was wrong when I started to get seriously out of breath after minor exertion and started having trouble sleeping at night.
I elected to have a St. Jude mechanical valve, mostly bacause I didn't want to risk facing additional surgeries every 7 - 10 years.
The downside is taking the Coumadin, but frankly it's no big deal to me.
I had my surgery done at Sarasota Memorial by Dr. Martin Beggs.
Sarasota's cardiac facilities and staff are super. I went into the hospital on a Thursday for a catherization, had my AVR on Friday morning, spent one day in ICU and was discharged on Tuesday morning.
I went back to work part-time after about six weeks, and was full time by 8-9 weeks. Physically, it took me about nine months to really get over all the effects of the surgery.
After my one-year checkup my cardiologist, Dr. Rick Yaryura, released me to do anything I wanted to. However, he did advise me to give up power lifting or very heavy weightlifting (I used to bench press 300 lbs). I have modified my workouts to balance moderate weight training with aerobic training. I'm watching my diet closely and am trying to lose some of the bulk that I had developed from the previous years of heavy weightlifting.
I like challenges and am comtemplating training to do a triathlon later this year, provided my old football knees can stand up to the running.
Good luck. Let me know if I can be of any help.