Hi - New to this Site

[Leah35]

Hi there,

I am new to this site, so just let me give you a little background into my situation. I was born with Congenital Heart Disease and had a aortic valvotomy for aortic stenosis (in Winnipeg, MB Canada). In 1986 (at at 15, I had a paricardial patch repair for aortic insufficiency. I am now 35 and am experiencing bouts of exercise intolerance, chest pain, dizziness, etc. I have had a stress echo and the likes and my cardiologist (Dr. Sandra Baker in Kelowna, BC) has referred me for AVR. She has sent my file to Dr. Tirone David in Toronto (apparently one of the best in the country and also an authority on the Ross procedure). I have yet to hear from his office and am just biding my time trying to do some research about what type of AVR to go with.

On my most recent echo, I had normal left ventrical size and function with thickness at the upper limits of normla. The ventrical is normal in size and function. A sclerotic bicuspid aortic valuve with gradients of 80/52 and a valvue area of 1.1cm2. Moderate to severe aortic insufficiency.

Funny enough, I have had moderate to severe aortic insufficiency for several years, but I have just started to be symptomatic this year.

My cardiologist seems to think that I am a good candidate for the Ross procedure because of my age, etc. I am just starting to do research in this area. I guess I would just like to hear from people that have made a decision on what type of AVR to go with and why they chose that type. I know that everyone is unique and their decisions are unique. My husband is having a hard time with this (my folks took me through my other two surgeries, so this is a first for him). He is scared by the thought of me taking coumadin for the rest of my life.

Anyways, I'm really glad that I have found this site and I would love to hear from some of you.

Leah35

 

[geebee]

Leah,

I can't help you with AVR "stuff" but I did want to welcome you. You will hear from quite a few people shortly with all the information you could possibly need to help you with your decision.

Good luck.

 

[Ross]

My husband is having a hard time with this (my folks took me through my other two surgeries, so this is a first for him). He is scared by the thought of me taking coumadin for the rest of my life. Leah35

Should you choose mechanical, why does he fear you taking Coumadin for the rest of your life? Coumadin gets a bad rap needlessly and is no where near as frightening as many make it sound. May I suggest as part of your selection process, that you visit Al Lodwicks site at www.warfarinfo.com and study up on Coumadin. His site will greatly reduce the rubbish you've probably been told about it.

 

[Leah35]

Hi there,

Thank you for welcoming me. I will visit that site you mentioned in your post... I think that it will help my husband as well.

 

[ArleneT]

Wow!

Wow!

Leah,
Sorry, I can't answer your questions, but I did want to say welcome. I thought I recognized your surgeon's name, so I did a quick search and came up with hundreds of articles about him. One even called him the worlds best cardiac surgeon.

Here are a few of the links.

http://en.50plus.com/display.cfm?documentID=5789&CabinetID=323&LibraryID=106

http://www.provost.utoronto.ca/English/Professor-Tirone-David.html

http://www.cjnews.com/pastissues/01/sept6-01/health/health.htm

You appear to be in very good hands.


Arlene

 

[Leah35]

Hi Arlene,

Thank you for welcoming me. I have actually searched the surgeon's name as well and have been very impressed with what I have found. I look forward to meeting with him

 

[rbl1999]

Hi, Leah, I also would like to welcome you to a great place, there are many knowledgable people here to see you thru all of this. I had a bovine aorta vale but I am a lot older than you (59)so the decision was much different for me... Best of luck with your research.. Rose

 

[Mary]

Hi Arlene,

Thank you for welcoming me. I have actually searched the surgeon's name as well and have been very impressed with what I have found. I look forward to meeting with him

Leah,
If you find an experienced Ross procedure surgeon, that is a viable option. The surgeon needs to have done many of them; 200-300 + would make me feel secure!

 

[tobagotwo]

If you have no connective tissue problems, you may well be an excellent candidate for a Ross Procedure. A successful Ross Procedure is the best of possible results. As Mary pointed out, you're best off with a very experienced surgeon.

There are a number of threads about the RP. Using the advanced search should help you find them.

We have a number of successful Ross recipients on the site, and I'm sure they'll come along to share some of their experiences.

Best wishes,

 

[gijanet]

Just wanted to welcome you to the group.......

Just wanted to welcome you to the group.......

The Ross would be great if you qualify............sounds like your surgeon is top notch, but, like the others have said, make sure he has done the Ross mucho times. Hugs. Janet

 

[Leah35]

A big thank you for everyone's kind words. I'm thinking that this site is going to be very helpful to me! Hugs to everyone.....take care of yourselves...

 

[Geo]

welcome

welcome

Leah,

welcome to this wonderful web site. I was in you shoes just seven weeks ago. What I got from asking for advice and feedback was that there are no right or wrong suggestions. Everyone has walked the walk who responds here. I respect all these great courageous people that offer advice. What worked for me is really having some long conversations wih my cardiologist, who ultimatley is the person I would be dealing with after the surgery, in terms of long term care. We talked about life style choices and anyother medical issues as two main topics. The more research you do, the better. Although for me, it got to the point that I was trying to look under every rock and ask so many people for advice that it was exhausting. My wife has had 2 OHS. The last one for an MVR. She went mechanical with a St Judes and is on coumadin. She has been managing the coumadin just fine. I went tissue with my AVR due to some back issues that I have. Even my own surgeon did not lean one way or the other, but offered the two choices. I guess what I also learned is to follow what your gut is telling you after all the advice you get. You will not make the wrong decision.
Best of luck in this process.

George

 

[Perry]

Leah35

Welcome,

I am almost 4 weeks post-op from AVR surgery. I went in with Aortic insufficency, almost a-symptomatic (reduced excercise tolerance though), and was a good Ross candidate.

Closer examination at surgery showed the Ross was not such a hot choice for me - it was a combination of aortic root enlargement and a little PV leakage. My second choice was mechanical. I am the owner of a shiny new ON-X valve.

I took much time to research the option list and am glad I did since the first choice, Ross, was not viable. This site was/is invaluable.

At 42 years old and somewhat active, I was in the muddy area where a tissue valve may last longer than in someone much younger. Like many on this site, the thought of a tissue valve and 10 -15 -20 years of technological advances to help me later sounds pretty reasonable. But I also looked at a mechanical valve the same way. Advances with anti coagulation treatment and possibilties of reduced anti coagulation needs with the ON-X hold the same promise. I was rather glad to know I had a mechanical valve when I found out. I was kinda bummed when I started taking coumadine though.

The hospital stay was not something I enjoyed - it really sucked. With a tissue valve I would have been home sooner, likely no coumadin, and no clicking. All positive. But if, in my case, I needed re-op in less than 10 years I would dread it and my body would not like it all that much.

All in all the choice between tissue and mechanical was tough and I went back and forth many times. Since I did not get the Ross, I am glad I had a say in the next choice. I second guess my choice often and I figure I would also second guess a tissue valve. But I am glad it's over with for now and I am on the mend - regardless.

If there is a technically, medically correct choice, your surgeon(s) ought to focus on that. If not, like in my case, it is a choice we all need to make. This site will provide most of what you need to know, but no one ought to tell you what you should do (besides get better). If it seems I am recommending mechanical or tissue - did not intend to. Not that I am not a nice guy - you just need to make the coice right for you.

Get better!!!!!!

 

[Leah35]

Wow - thanks Perry! It really is a difficult decision isn't it? I'm on an emotional roller coaster and I think that most of it stems from the choices I have to make and the waiting that I have to do. I have now been waiting a month to even hear from the surgeon's office. I have my next apt. with my cardiologist on May 8th....and she told me that if I hadn't heard from the surgeon by then, she would start calling him and bugging him. UGH! I'm really a planner and living my life in "limbo" has really been difficult for me. Everyone keeps asking me what I'm waiting for......well, I have to actually meet the surgeon before surgery...lol.

I'm really not looking forward to the hospital stay either. The last time I had surgery I was 15 and thought that I was invincible...well, I'm not feeling very invincible this time around. Actually I'm quit tired and boring! I'm glad to hear that you're doing well and that you had a back-up decision. You'll probably always second guess your choice, but try to focus on the positive. You're here and you're doing well.

I will keep everyone updated on my status, but for now, take care of yourselves!

 

[Perry]

Leah,

It's a difficult decision but, on the bright side, it's choosing which way to be fixed. I said a few times I wish the surgeon would just tell me which way to go. But the personal factors make it more than just a technical choice.

Also, maybe 'second guess' is a little strong. But surely there are times where what you may expereince post-op has you thinking "if I had....". Maybe that is textbook second guessing. We are all glad to be here post-op and that is the thing we have in 99% common. Some did have real complications though. The details are good discussion and help for those with pending surgery.

Be well.

 

[baldstuart]

I had my Ross Procedure on July 21st 2005. It was a five hour operation. I spent 5 days in the hospital and was up and walking around the day after surgery. If you are a candidate for the Ross, I would look at it as your first choice. I am so thankful for the decisions that led us up to undergo the Ross. My wife and I looked at both mechanical and tissue, but just felt after the our research that the Ross was the way to go!! I am very active with golf, scuba diving and camping with the family. The Ross gave me the best of all worlds and I just went in for a follow up echo.....perfect. I have never felt better in my life. Good luck.

 

[Leah35]

Hi there,

Thanks for filling me about your experience with the Ross procedure. I know that every situation and every personal decision is unique; however, it is nice to hear how people are doing with each of the different techniques. This site is amazing and I'm so glad that I found it....and all of you.

Take care

 

[PJmomrunner]

Hi Leah - Nancy recently posted a link to the journal of one of Dr. David's patient's. It's pretty informative and a painless read--thought you might particularly enjoy reading it (as well as hubby). http://www.stevegoldberger.com/bt/Bu...omePage1a.html

 

[RossGurlie]

Ross all the way baby!

Ross all the way baby!

Hehe! I had the Ross procedure about 10 months ago when I was 13 czuz I was born with aortic stenosis. I was pretty much asymptomatic but then I had to go to the cardiologist when I got my physical for camp and apparently, it was pretty severe. So I had the Ross last summer. First the Dr. tried to repair it but he wasn't staisfied so he then proceeded with the Ross. Now I can run and do whatever I want and have had basically no side effects. I'm on NO medicine right now, so that's a plus, especially when you're 14! Anyways, the Ross is a good way to go if you're eligible.

 

[Mary]

Welcome, Rossgurlie!
I wanted to have the Ross procedure done, but it didn't work out at the end. Like you I had a BAV with aortic stenosis. Unlike you, I'm 53 years old so I'm content with the bovine valve I received.
I'm going to ask Ross (forum administrator) to maybe move your post so it will be a new thread. That way more people will see it.
Anyway, once again, welcome and please hang around and let us know how you're doing!
Mary