upcoming avr

[Getzfixed]

Hello all,
I am a 32 yr old former lurker who was recently recommended for avr. Last May I found out that my life long heart murmer was a severely stenosed bicuspid aortic valve. At the time my wife and I were two weeks away from delivering our fourth daughter. Needless to say we were shocked and frightened. At that time my cardio estimated need for avr to be within 2-4years. Given this reprieve I spent a lot of time on this and other sites. i have to say that i was both enlightened by the information here and comforted by your stories.thank you all .
fast fwd to nov. 20 after reviewing my echo and hearing of an sob episode that was so minor i felt it was barely worth mentioning, my cardio recommended a surgical consult. although i thought i could handle this news, we were/are crushed. the surgical consult was the same day and went pretty well. I am going to u of penn in phila. my surgeon's name is Dr Joseph Bavaria. Although i have never read his name on this or any other site everyone at u of penn tells me he is top 5 in the country. of course he recommends mechanical-a carbmedics composite to replace valve and root. the tissue option they recommend i believe is a tor. spv He said that although the tissue valve would mean a def. second surgery, the risk in a 2nd is almost identical to the 1st. he told me that i can not make a bad choice. i have changed my mind 100 times since the consult. i also have a hard time accepting to choose this procedure when i haven't had any major symptoms. I understand its the smart play but its a tough pill to swallow. my questions now are (1)has anybody out there been to Dr Bavaria-he does 250 avrs/year?(2)how many of you have the carbomedics valves?(3)let's have at it again-tissue or mechanical?
Sad to be out of the "closet" but glad i found this site
Getz

 

[Nancy]

Hi Getz, Welcome

Hi Getz, Welcome

If you've been lurking, you know just how wonderful this site is and how much valuable info. can be gained.

You're a young fella, so should have no problems with your surgery. Seems that the young-uns do very, very well.

We hope to see you post often and ask a bazillion questions as you approach your surgical transformation.

Welcome, and good luck.

 

[Jean]

Decisions

Decisions

Hi, Getz

You have to make the decision as to whether you go tissue or mechanical. It is so personal I don't think anyone should try to sway anyone else in their decision. You need to talk, read and study all you can and then make the decision.

Personally, I chose a homograft and have not regretted it for even a second. I did not think my lifestyle would work with a mechanical and I have a real abhorance to the coumadin...I didn't think the surgery was all that bad and figure by the time I need another one, we will have even slicker technology available.

But that is for you to decide. God bless and come back and join us again.

 

[Elsiedog]

Hi Getz,

I had my AVR at 33, I went for the Ross which seemed at the time to be a good compromise between the various choices, dont knwo if this is an option for you but worth looking at, good site is myrossprocedure.com . I would agree with the other replies that the choice is a very personal one and whichever one you make is the right one if you are happy with it.

The actual surgery is alot easier than you would imagine, first few days are the hardest but at your age you will be up and walkign very quickly and as long as you don't overdo it the recovery is period is a good chance for a rest!

Any questions you may have on specific things please feel free to emial me at [email protected]

 

[sylviayasgur]

hi getz!
welcome! this is, as you said, a wonderful place. i could never have survived my husband, joey's surgery without the support from everyone here.
elsiedog and everyone else is right, you cannot make a wrong choice. it's a very personal thing.
you are young and many options are open to you. have you checked out the thread started by peter easton back in late aug.-early sept. entitled "making the choice"? it gives a wealth of info about tissue vs. mechanical.
it doesn't go much into the ross procedure, because i think the rp is usually done on patients within a certain age range.
where in n.j. do you live? i know that cardios usually recommend and know the finest surgeons, but in our case, we found joey's surgeon (on the web!), met him, and loved him. we weren't sure which way to go (in terms of valves) andhe spent 2 hours educating us. he does the most rp's in this area and is known for that.
joey's cardio thereafter sent us to another surgeon at columbia presbyterian, whom we did not like at all. so, we ended up using this surgeon joey's cardio had not heard of, but when we asked around (other cardios and drs), he came highly recommended, especially for the rp. we were so happy with him.
have you met with dr. bavaria yet? did you like him?
sometimes having choices is harder, i think. please ask any questions of us, we're glad to help.
good luck in making this big decision.
be well,
sylvia

 

[Kevin M]

I have to agree with Jean. Tissue vs. Mechanical is a decision only you can make.

I'm a couple of years older than you and I have to say that the choice is difficult because the pro's and con's are not as defined as they are at some other ages.

It's true - there is no wrong choice. Many of us second guess our choices too, so don't be surprised if the scale continues to sway between the options.

They are great options and it's a fortunate time to face the choice in that the technologies allow us to make these decisions.
Kev

 

[Bill Hall]

Getz - Sorry to hear about your possible future surgery. I heard about Dr. Bavaria on this site around a year ago when I was looking for a surgeon. I finally decided on Cosgrove (Cle). Unfortunately, I can't remember who suggested him. UPenn, is a good hospital to consider, I certainly gave it thought. About the symptoms, I had none and they told me at surgery that I had waited too long. I would have done it differently, if I had known. The surgery is a high probability of sucess. If you lurk for a long time you will see many people go through this, very few bad stories. Your age is in your favor. Good luck with your heart problem and nice family.

 

[Bill Hall]

Getz - Forgot to mention that I have a homograph. My decision was based on wanting to avoid medication after surgery (blood thinners). I do not take any now (age 48). I sometimes wonder about a second surgery, but it is rarely on my mind.

 

[Getzfixed]

Thank you all for your replies. Your insights and reassurances are very helpful. those closest to me are quick to offer their advice on "what they would do" and i appreciate their thoughts. I really value the thoughts of people who are walking in the same shoes I am. A friend of mine had his insufficent aortic valve repaired by Cosgrove in Sept and never met the man. Dr. Bavaria gave me plenty of his time eventhough there were a lot of people waitingto see him. He was patient and reassuring, laying out my options for me very clearly, even repeating them a couple of times. While all of this is not a substitute for surgical skill, he basically does one valve every working day not four or eight or whatever they do in Clev. A little hand holding seems to help me. For now its back to the debate in my head: repoeration vs. blood thinners. Does anybody know anything about the coumadin replacement rumored to be on the horizon?
Wavering in Jersey
Getz

 

[Gail in Ca]

At age 34 ( in '89) I had my first AVR and got a porcine valve. Homografts were avail then but I was not a candidate for that, as I had a ascending aneurism also.
I lived a very normal life, taking no drugs and doing what I wanted as far as exercise and sports.
This was very nice.
When the valve failed after 11 years, I got a mechanical valve, so I wouldn't need another AVR.
So, I am on warfarin and have given up snow and water skiing. The bruising is amazing just when I hit my leg or arm on something, so I realized I shouldn't risk the sports which might have a high incidence of falling and bruising.
It is true you must make your own decisions on the valve type you would prefer.
I am glad I had those 11 yrs of a more normal life without having to poke my finger once a week!
That's my opinion,
Gail

 

[Peter Easton]

Another reason why it's true that there are no bad choices (as long as the surgeon is a good one like yours) is, I think, that there has been a great deal of improvement in ALL varieties of AVR in recent years -- and a rising tide lifts all boats, so to speak. There are hopes and indications now that we may be headed for either Coumadin-free mechanical valves or substitutes for Coumadin, and that medication itself is much better under control. On the tissue side, there are varieties now (like the Cryovalve Synergraft) which promise more than 20 years of useful life (and by that time the whole AVR procedure may be handled on an out-patient basis!).

Contrast that with fifty years ago, and we are truly living an age of miracles. I got a lot out of reading a book called "The King of Hearts" during my convalescence. It recounts the story of Dr. Walter Lillehei, who pioneered open-heart surgery in Minnesota in the 1950s -- an amazing tale. Before he and colleagues worked it out, with a lot of failures along the way, people just didn't survive these conditions, period. Now thank we all our God.

Peter

 

[maxximom]

Dear Getz
I am at the other end of the age group from you. I am 9 weeks today post op with a AVR (St Judde Toronto Porcine Stentless) and triple bypass. I am recovering very well..thank God!
My daughter is the Trauma Social worker at the U of Penn and I checked with her last night to ask if she knew of Dr Bavaria..she told me that he was wekll known and very respected by the other surgeons at the hospital and when they had very difficult cases such as gunshot wounds to the heart they have him do the surgery. I just thought that you might like to know. Also my daughter told me that she has some colleagues in the cardio thorasic dept that would be happy to look in on you when and if you go to Penn..if you do decide to go there please email me and I will give her your name and your date of surgery.
I too had a hard decision and agonized if I should go to Cleveland or have my surgery here atb Duke. I had sent my records to Cleveland and then Sept. 11th happenend and I decided to stay here..it all worked out fine. If I can help in any way please contact [email protected]. Best of luck with what ever you decide!
Joan