new community member says hi

[leine]

hi vr-community,

I was diagnosed with a congenital malformed aortic valve when I was two years old. Since then I lived a non-sympthomatic life with annual routine controlls in a nearby hospital. I didn't have any restrictions from my doctors and did every sport I wanted. With 18 I was lucky enough not to be recruted to the military or social service (which is mandatory in Austria) because of my heart disease. I never really worried to much about my heart, until I was 18. This was when I moved to Vienna to enter college, and my new cardiologist told me that surgery was inevitable in the future, and it will probably be necessary within the next 5 years. Now I am 27 and live with my wife in Boston. Yesterday, I received the letter from the last echo and my AI is now graded as severe. I have a leaking uni- or bicuspid aortic valve (they are not sure). I will meet my cardiologist next week and I want to be prepared as good as possible when I meet him. I was very happy when I found this online-community yesterday, and decided therefore now to ask for your advices. Honstly, I should have prepared myself already much more for this upcoming event, but I somehow always put it beside.

From the reading I did until now, I think that I really want to avoid blood-thinners. However, I also realize that tissue valves last little time with my age. The Ross procedure seems an interesting option, but it seems to be very risky. Is it time for me to go to surgery with a AI graded severe or can a still wait a year or so? Can you recommend any good surgean in the greater Boston area? What questions should I ask my cardiologist next week?

Thanks a lot and I am really glad that I found this forum.

 

[geebee]

Welcome to VR.com.

You have a bit of research to do and we will help you. It is very important to have surgery before there is any heart damage so, unless there is some reason to wait, better to have it while you are feeling good.

The Ross procedure is not risky if you have a very experienced surgeon. The only issue with the Ross is that sometimes they find out it can't be completed but, if the option is there, it is a great option.

Coumadin is not a big issue for most of us on this site who take it. I have been on it for 26 1/2 years and have never had any problems other than the slight hassle when surgical procedures are needed. I had my first surgery when I was slightly older than you (mitral not aortic).

Tissue valves these days are expected to last up to 20 or 25 years. Many people are going tissue for their first surgery and mechanical once that tissue valve wears out. Having been through 3 OHS, I would take the path that offers the fewest surgeries but, as I have found out, there are never any guarantees.

Ask questions, gather info, talk to your cardio and surgeon and you will come up with the right choice.

 

[leine]

hi,

thanks for your reply geebee. I think that I will start with further exploring this site. I realized already that finding the right surgeon is the key of having a successful avr. I want to avoid coumadin, because I still plan to do extanded travels and sports. I am more afraid of having a restricted daily-life than confronting a major surgury.

 

[Adam 12-21-05]

Hey Leine,

Welcome...

Fyi, I had a Ross Procedure in 2005.

Gee Bee is right on the money. If you have a good surgeon, the risk is low.

Considering I am very active (surfing, biking, hiking, scuba) and on the younger side (35), the Ross has been a very good solution for me.

Dr. Starnes from USC was my sugeon.

Cheers,

Adam

 

[ALCapshaw2]

StretchL had a Ross Procedure in January 2007 and has posted his Photo Journal on the web. It is very informative and complete. Also see his posts leading up to his surgery.

Here is his announcement of the Photo Journal:

My Ross Procedure Photojournal Now Online

--------------------------------------------------------------------------------

Greetings, all. Sorry I've been absent for a while. I spent most of the weekend with my Boy Scout troop (a good endurance test for 6 weeks post op!) AND... I finally got the photos of my surgery posted. The gallery's linked in my sig below, or you can just click here: http://stretchphotography.com/avr/images

Noni says I put up WAY too many images, but I wanted to provide as much detail as possible for those who are in the waiting room.

Be sure to click the link on the last page of the gallery to see a video of my recollection of a psychadelic anesthesia dream. It takes a few minutes for the movie to load, but worth the wait for a good chuckle, I think.

Peace- StretchL
__________________
Congenitally Bicuspid Aortic Valve. Now no murmur, no nuttin'.

Ross Procedure 12/11/06 by The Great and Powerful Dr. Paul Stelzer of Beth Israel Hospital, NYC. http://ps4ross.com

To view a photojournal of my experience with valve replacement surgery, please visit http://stretchphotography.com/avr and click on the word "Images." (Please note that there are four pages in the gallery.)

To view some of my work, please visit http://stretchphotography.com

 

[swatig]

Hi Liene,

Welcome to VR. com. It is one of the best places to get information and people on this site are very helpful. Best thing about this site is that all of us have either gone through this problem or are going through it so you will get first hand information and unbiased opinions.

I am also sailing in the same boat as you. I am 26 yrs old with bicuspid aorta and would be goin through valve replacement on 29th may. I dint have any symptoms until recently when I started getting shortness of breath. I have decided to go for tissue valve because of simple reason that I want to have kids, also that I dont want to take coumadin. but you will find a lot of people on this forum who are doing very well with mechanical valve and take coumadin without any problem.

The only thing I would like to tell you is gather as much information as you can coz that will make you feel good and less worried. I am looking forward to my surgery coz I know its goin to be a start of a new and healthier llife for me. I am planning to join Salsa classes and digital design programme after my surgery so really excited about it.

Dont worry and remember that this is one of the most common surgeries done today. We all are with you

Cheers,
Swati

 

[Marguerite53]

Welcome to VR.com. You have every reason to feel unsettled about your upcoming surgery, but the more you read here, the more you will find that normal life and success follow this life-saving event.

The Ross may or may not be a good option for you. It is definitely worth looking into since you have some time to do some deciding. Structurally, there seem to be certain parameters on how that decision is made. It is VERY important to find a surgeon who has done lots of Ross procedures if that is what you decide to do.

Your cardio will not have as much information for you as your surgeon. Use the cardio to help find a good surgeon. The cardio will be the one to watch your progress post surgery, see to it that your meds are working to your best advantage for the new heart valve, keep an eye on your overall health so that the whole thing is a success. The surgeon is the one who should help you decide which valve. Choosing a surgeon who is most familiar with your choice of valve or procedure is key.

Again, welcome! Glad you found us. Feel free to ask any questions at anytime.

Marguerite

 

[Mary]

hi vr-community,

I was diagnosed with a congenital malformed aortic valve when I was two years old. Since then I lived a non-sympthomatic life with annual routine controlls in a nearby hospital. I didn't have any restrictions from my doctors and did every sport I wanted. With 18 I was lucky enough not to be recruted to the military or social service (which is mandatory in Austria) because of my heart disease. I never really worried to much about my heart, until I was 18. This was when I moved to Vienna to enter college, and my new cardiologist told me that surgery was inevitable in the future, and it will probably be necessary within the next 5 years. Now I am 27 and live with my wife in Boston. Yesterday, I received the letter from the last echo and my AI is now graded as severe. I have a leaking uni- or bicuspid aortic valve (they are not sure). I will meet my cardiologist next week and I want to be prepared as good as possible when I meet him. I was very happy when I found this online-community yesterday, and decided therefore now to ask for your advices. Honstly, I should have prepared myself already much more for this upcoming event, but I somehow always put it beside.

From the reading I did until now, I think that I really want to avoid blood-thinners. However, I also realize that tissue valves last little time with my age. The Ross procedure seems an interesting option, but it seems to be very risky. Is it time for me to go to surgery with a AI graded severe or can a still wait a year or so? Can you recommend any good surgean in the greater Boston area? What questions should I ask my cardiologist next week?

Thanks a lot and I am really glad that I found this forum.

Hi, Leine!
Glad you found us!

 

[Karlynn]

Welcome!

I agree with others, you want to get your replacement before permanent damage is done.

The stats on tissue valve longevity you see are for people in the older age range. So you might seeo 20 years, but that's for someone who is 65. You are correct that one in someone your age will wear out more quickly. But with the advancements, and lack of data on younger tissue valve recipients, no on can really project how long that will be.

Most people come here with a pretty scary view of Coumadin. I've been on it for over 15 years and have done some pretty significant travel. I'm not athletic, but I do work out 4 days a week. Take a look at our Active Lifestyles forum and you'll see how active many of our Coumadin members are. And Mike C's post today about the woman with a St. Jude valve who climbed Everest, demonstrates that an active lifestyle is not contra-indicative for warfarin use. If the sports you participate in are full contact and have a regular risk of head injury, you would want to stay away from Coumadin. Biking, running, sailing, even kayaking (see mtkayak's posts) are all done by members on Coumadin. The biggest problem with using Coumadin is dealing with a medical community that seems to be very slow on the uptake of new information. Many operate off of management standards from 20 years ago and a lot has changed in 20 years.

We have some members who have gone to well known Ross surgeons. If you are considering that, I echo Gina's comment that you will want one that is very experienced.

I would suggest going through each of the forums and reading the "Sticky" posts. Each has information in it that the moderator, or the membership here, has felt is good, important information.

Best wishes. I'm glad you found us!

 

[WayneGM]

Welcome to the VR Community. Glad you found us. You'll find lots of information and support here. I was feeling fine with no symptoms but I got the surgery done as soon as the regurg was severe to avoid any permanent damage. As it was, the heart chambers had started to enlarge but within a couple of months of the surgery they were already back to normal.

 

[Phyllis]

Welcome, you are in a great city for valve replacement surgery- either at Mass General or Brigham. We used Dr. Lawrence Cohn at Brigham and highly recommend him. If you still want to consider the Ross procedure, there are many here who have had it in New York which certainly is doable from Boston as well. Just put in a search for Ross procedure and you will come up with many threads. Glad you found us and hope we can help.

 

[leine]

Thanks a lot for all your replies, what is very important for me at this moment. You all know what I am talking about and have similar experiences. My situation is further a bit complicated, because I am leaving the US end of august and will go back to europe. This means, if I want to have my valve replaced, I probably should do it better now. Specially because going back to europe will probably also mean to be some months without insurance what would be probably be very risky. My wife recently observed some changes in my breathing - so, i think its time now. I also did some reading and a stentless valve seems to be a good option. I will certainly consider Dr. Lawrence Cohn and MGH and Brigham. However, I will certainly stay closely in touch with you as a prime source of information and to share my experiences with you.

Best wishes

 

[cherbam]

leine,

I had my surgery at Mass General Hospital. Dr Gus Vlahakes was my surgeon and he is also the Chief of Cardiology there. He is awesome

 

[Susan BAV]

Welcome to you; glad you found the site. I don't think I've ever heard of a unicuspid; or at least I don't remember hearing such. Interesting! There have been some members here who had quadcuspids replaced also.

Take care and post again.

 

[leine]

they are not sure if it is uni- or bicuspid - this means they cannot clearly say it from the echo. Might be bicuspid with one of them being smaller than the other.

which valve replacements are the speciality of Dr Gus Vlahakes; which new valve did you get cherbam? What does Dr. Lawrence Cohn at Brigham prefer?

Is there any preference for a special valve type for MGH, Brigham or other hospitals in the greater boston area or NYC, or they are competent for all types of valve replacements?

Thanks so much!

 

[cherbam]

leine

leine

My tricuspid valve is bovine and my mitral and aortic valves are St Jude Mechanical. I'm two years out and unless I told you or you saw my scar you would never know I had OHS. I feel outstanding