I'm only 24!

[PathFinder]

forget stats!

forget stats!

Hello from Bulgaria! Hey, buddy, I am at a situation very close to yours. I,m 24 and have severe regurg of a BAV. Still no symptoms, but already at the limit of normal hearts measures 40/55mm of left ventricle.
About the statistics - DO NOT DO MY MISTAKE! Many of the people here remember my tragical posts, that I have written in a deep depression. And that all was becouse of misunderstanding of old stats, or stats for people above 65, or stats which have nothing to do with my problem... Plus - I think, that it is very relative about the data of events with coumodin per year. I want to remember you, that it depends of the observed age groups. Yunger people are less prone to have severe complication with it, in compair to those above 65.
I have a very good cardiologist. She works with BAV patients for 20 years. First thing that she is sure about is that I am a candidate for mechanical valve. No other conditions! I don't know what your decision already is, but I believe in my cardio and she knows what she is doing.
About the active life - you have already seen many mech. valvers on comoudin, living very active life, drinking and having fun. A patient of my cardio, younger than me, had to have surgery for BAV. She put him mechanical... last september he won the tennis-tournament in my city!

I hope I was useful for you!

Good luck!

 

[Susan BAV]

Another one bites the dust...

Another one bites the dust...

Very true, Ross, about some statistics!

In the meantime, however, I have received a lengthy and unpleasant bombastic tirade of a PM from someone who unhappily insisted on taking my post comments, about being better balanced and positive and supportive, personally (no more of those please from you know who you are)... (edit - Unhappily being the recipient of yet another unpleasant PM rant, under false guise of an apology, let me ask again for that same member to please not send anymore...)

So thank you; here is yet another Tissue Valve Recipient who does not feel comfortable and free to post -- statistics (which I gave up some time ago) or opinions -- on this particular forum.

Boomersooner - Hope all goes well in your choice. You have received some really excellent information thus far. Keep asking your questions and keep reading and find a highly-recommended and excellent surgeon. Take care!

 

[Ross]

Statistics say that I should have died 3 years ago. Statistics say many things I've been through I should never have made it through. There are too many variables that come into play when doing the statistics thing. Sure they are good for something, perhaps giving you an emotional anchor or some sort of solice, but the reality is, the unknown.

 

[boomersooner]

So would the RP be an option for me even if my aortic root has to be replaced? If so does that increase my chance for a re-op in the future?

 

[Bradley White]

Hi Jared,

I would suggest that you contact Dr. Stetzler, Dr. Ryan, or Dr. Pettersson to get an answer to your question about your viability for the RP. They would know better than anyone one this board about the options when the patient has aortic root enlargement. If you do go with the RP I strongly suggest you go to one of them or a similar surgeon who has done many RPs. You may also want to balance the opinion of these pro RP surgeons with some surgeons who are less inclined to do the RP, then you will be able to weight the arguments for and against in an unbiased manner and make your decision. I am sure some of the others will be around to be give you contact info if you so desire it.

Brad

 

[xbxb]

Another Option - Valve Surgery

Another Option - Valve Surgery

I believe our cases may be similiar. I had an Aortic root replacement and Valve sparing repair to a bicusid valve at age 42(18 months ago). .

I found out when I was 21 about my bicuspid valve. The hope was I would never need surgery, 21 years later I needed surgery.
Valve choice is a tough decision - in my opinion as I am sure you realize,your decision is much more difficult than if you were older. Many Dr's will lean towards a mechanical valve. At 42 I was concerned about being on blood thinners so long and also because I live a pretty active lifestyle. I know there are plenty of people on this board that are on Coumadin and they will tell you it is very managable - but I would also want to speak with people that are your age that are on Coumadin to get their opinion before you made a decision.
So that left an animal valve. This would guarantee you a resurgery(s). Each time you have a resurgery the risk goes up due to scar tissue.

There may be a third option - Repair. Some aortic valves can be repaired. I can tell you before I had my surgery I did a lot of research, most institutions do not offer this as an option. Most Dr.s have little knowledge.

Problem is there is very little data. Cases such as ours are relatively rare- most of the time the valve is replaced- patient is older, or depends on the experience of the institution where you are having your surgery.
A bicuspid valve is a disease of the Aorta and 50% of bicuspids will have an enlarged Aorta that needs work. I would recommend that you speak w/an aorta specialist.
After a lot of searching the 4 institutuions I found that have the most experience w/ repairs w/some level of experience: I got opinions from all these institutions- FedEx is great-you can too.
Cleveland Clinic
Mass General
Brigham & Woman
Texas Heart Institute
I chose Mass Gen. The surgeon needs to be an experienced valve man AND Aorta specialist.
It is true that no one can tell you how long the repair can last. I was given a 50% - 80% chance of possible tissue saving repair from all the opinions I had from the above hospitals. After my TEE test-gives best look at valve- my surgeon was 80% confident- which proved to be correct.
The thinking is this - that a repair is your own body. Being free of a mechanical valve was my choice. How long an animal valve would last was an issue.
My surgeon was quite conservative - he told me that the length that animal valves last are still variable.
It is expected that I will need another surgery some day- but the hope is that I will be much, much, older. Your situation, because you are in your twentys needs to be discussed to see if repair is an option. Because my root was replaced with an artificial piece, the sense is my repaired bicuspid will last longer. I asked my surgeon if I ever needed a repair again- would he rerepair it or replace it. He said he never thought about it, but yes he would most likely try a rerepair if the situation came up.
The Aorta specialist that I now see once a year told me the odds are that my next valve will be made from my own body.
My surgeon told me in his whole career he had only performed approximately 15 of the exact same type of surgeries that I had done- he is senior surgeon. He also told me he had not yet had one fail.
All the Dr's agree there really is very little data on how long a repair will last. But the Dr.s that are experienced in this exact procedure believe it makes sense, especially in someone my age. I do not know what they would say due to your age. What is critical is that you are a good candidate, and that the surgeons are experienced in this delicate procedure.
By the way at age 44- I am playing basketball 4-5 times a week now!
Please email me if you have any further questions.

 

[boomersooner]

Thanks xbxb. Did your repair need OHS or was it done a different way? I am really looking into the Texas Heart Institute at St. Luke's, they are rated extremely high.

 

[HarleyM]

I hope this will help you. I'm 36 and very active. Born with bi-cuspid aorta valve with regurg @ 3.0 when found @ age 17. It progressed to 3.5 and I was not symptomatic. Then last year it went to 4.0 ++++ and I had developed symptoms. I didn't want surgery and had put it off as long as I could. I had been researching the on-x valve for a year or so. I asked the surgeon for info on this valve. To make all this info come together, I had surgery last April to replace my Aortic valve with the on-x(25mm). The root was also replaced due to 3 aneurysms (dilation). My Dr stitched the Dacron tube onto the valve and then to my heart and artery. Surgery was not nearly as bad as I had expected. Now I realize I should have done it sooner. On to the good part. I am still very active. At seven weeks I went back to work. At nine weeks I went diving in the Keys for a whole week and didn't get tired hardly at all. I am a avid hunter and climb trees for the hunt. Since surg I have hunted in four different states. I have beers with friends on the weekends(sometimes too many, lol). I ride atv's, utv's, boats and just got through building a large 4X4 that we play in the mud with. I can and do just about anything I want too. No restrictions from my Dr's. My Cardio Dr is VERY good and up to date with Warafin and replacement valves. Yes I'm on "blood thinner" if you will and have had no problems from it at all. Actually, my INR runs low (1.3 - 1.6) even taking 12 mg per day so that should tell you how active I am. Why am I telling you all this you ask? Because when I searched I couldn't find this kind of info from anyone. I live life and could not picture what I was going to be like after surg. Life is great now and the pill I take every day is a small price to pay for what I was given.

I chose the On-x and Warafin in hopes for the likely hood of a long time(maybe never) before the need for another surgery. My decisions are just that, mine. So far @ 10 months post-op, I am very happy with my choice. I might add, make sure you are very comfortable with your dr's and the info they give you. READ, READ, READ and ask a lot of questions. It will help you make a decision that will likely be the most important one of your lifetime! If you have any questions, Feel free to ask me.


Just got an echo done. My heart was 7.3cm before surgery and 10 months later it is at 5.69cm. Almost forgot, when I was in the hospital right after surg, my blood dr (Hemotoligists(sp)) asked me if I had a tissue or mechanical valve? I was concerned that she didn't know so I told her mechanical and asked why? Her reply was that she didn't see fragmented blood cells as with other patients with mechanical valves and asked what valve I had. This is very interesting and also noted by my other dr's.


I wish you the best with your decision!

 

[xbxb]

Surgery

Surgery

My surgery was open heart - thought my scar is only about 4.5". After 18 months my scar is difficult to see.
Due to the replacement of the Aortic root it must be an open procedure
The root is the what made my surgery more complex.
If you go to Texas Heart Institute- Joseph S. Coselli, MD is THE person you want to see.
I would only add - do your research, make a list, exam the pros and cons, and when you feel comfortable make the decision. Whatever decision you make - afterwards never look back - look forward to being healthy and knowing you did everything to make an intelligent decision - and then start enjoying life!