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[Caroline2007]

Deep breath...

Hi there, I am 41 years old, diagnosed with aortic stenosis at birth. Predicted to have OHS AVR at 30 my whole life, but that came and went along with my giving birth to my three children from 30-35. Moderate AS at 35. Severe AS just before my 41st birthday last June. Predicted OHS within 2 years. Follow up in Oct. - no additional deterioration... Of course this is dependant on whether I am symptomatic. For some reason I get really tired in the summer and feel slightly better in the winter. Started feeling chest pain occasionally when exercising aerobically but other times felt great. So give up high impact aerobics, but gave in to low, because I did not feel good either not exercising. I have good days and bad days. But I feel like I am having more good days now than last summer and am getting nervous with the summer coming up and knowing how tired I was last summer. (Can anyone comment on what I am experience here?)

I go for my follow up in April 5th. So I am posting for any advice! I know that my biggest decisions are: where to have the surgery; which surgeon; what type of valve.
At my age, my cardiologist was suggesting bovine or porcine (I need to find out the difference in those)... I am healthy, exercise, and eat healthy? and based on heredity I hope to live to 95. The theory being that even with a mechanical, I am facing one more surgery (due to calcification of the valve or wear/tear of the valve), so it would be better in my late 50?s than much later. Any thoughts on this would be greatly appreciated. Also does body size have any influence on valve selection? I am on the petite size.

By the way? I must confess I have been a lurker for months, so thank you in advance. I look forward to hearing from you all and participating in the VR forum.

 

[Susan BAV]

Hi Caroline and welcome!

Sounds like you know what's going on and what to expect; this is a really helpful site, isn't it?! Your opinion on valves and your age when needing surgery fairly mirror mine, however, I was becoming very symptomatic pre-op. Do you know why your valve was stenotic at birth?

Glad you found the site before your surgery! Post again and take care!

 

[Ross]

Deep breath...

The theory being that even with a mechanical, I am facing one more surgery (due to calcification of the valve or wear/tear of the valve), so it would be better in my late 50?s than much later. Any thoughts on this would be greatly appreciated.

While it's possible that you may need to have the mechanical replaced, it sure isn't standard. There are exceptions, but it should last you the rest of you life.

Size of your body matters only to the size of the valve. Valves come in every size imaginable.

 

[Caroline2007]

I love this site

I love this site

4 minutes and I get a reply!! I love this site.

I don't know why - just diagnosed as congenital.

 

[Caroline2007]

Ross - I missed your in replying. So a mechanical valve can last 50+ years?

 

[PathFinder]

Hi, Caroline!

Hi, Caroline!

If you don't have plans for more kids, then don't delete the possibility of mechanical valve. It's disadvantage is anticoagulation, but the ACT is a big problem during pregnancy. So, if you won't be pregnant anymore, mechanical is an option for you.

"The theory being that even with a mechanical, I am facing one more surgery (due to calcification of the valve or wear/tear of the valve), so it would be better in my late 50’s than much later."

I don't think it is enough reasonable statement. When you get in your 50's and you get another valve (tissue), then what will you do 20 years after it? another? I think 2 are enough. And nobody sais, that you have to change the mech valve exactly when it fails! You may change it when you get in your 60's or something. The chance of obstruction and failure in the mech valves are still less than the tissues. But it is my opinion.

Be well!

Ivo

 

[Susan BAV]

There may be another option, the Ross procedure. There are a few members here who recently underwent that procedure and they will hopefully see your question and post a reply. Sometimes it isn't recommended for bicuspids, which you evidently don't have, due to the possibility of connective tissue problems.

(edit - You will find some strong opinions about valves on this site. Hang on and don't let it put you off.)

 

[Caroline2007]

I think, continuing on the theory, I would then get a mechanical...

 

[PathFinder]

me too

me too

May be you have to wait a while, till one of the mech valvers come to put a post here, becouse I'm in the "waiting room" either But I educate my self every day more and more and now I know, that the On-X or St. Jude (both mechanicals) are the best choise for me (at my age and with my kind of congenital disease - bicuspidia).

Hey, you lucky one! See how fast the answers are comming to you!

Ivo

 

[Caroline2007]

I think, continuing on the theory, I would then get a mechanical...

Just for clarification, this would be the next replacement...

Hey, you lucky one! See how fast the answers are comming to you! (From Pathfinder)... I know! That's why I posted! Thanks!

 

[PathFinder]

valve selection

valve selection

Did you see the "sticky" thread in the "Valve selection" forum? There are some answers for you

Ivo

 

[Ross]

Ross - I missed your in replying. So a mechanical valve can last 50+ years?

It sure can! Dick0236 http://www.valvereplacement.com/forums/member.php?u=3372 and RCB are both pioneers in mechanical valves and they both are going strong after 45 years. RCB had to have one replaced, but still.

 

[Ross]

At your age, the question I would have is, do you plan on anymore children? If so, don't go mechanical, also if you have Menorrhagia (heavy menstrual bleeding)
? You don't need to be taking Coumadin. It's possible, but it makes life difficult with the bleeding. If your answers are no to these two, then I would certainly say mechanical, in hopes of never doing this again. Of course there are no guarantees no matter what you choose, but this would most likely be a one time deal for you.

Tissue valves are lasting longer and longer, but the newer ones are too new to really say how well they'll perform.

It's a difficult choice because they all have their pros and cons, but settle on what you think is best for you and then never look back or second guess yourself.

 

[cherbam]

Hi Caroline,
I am 41 and had OHS 2 Yrs ago. My aortic and mitral are St. Jude mechanical valves and my tricuspid valve is bovine. My surgeon told me my mechanicals should last my lifetime and my bovine valve about 20 yrs (maybe longer). I guess I just don't want another OHS for at least 20 yrs. There are people that worry about the coumadin issue. It is really no big deal. I'm sure whatever choice you make will be the best one for your situation.

 

[Kate]

Hi Caroline!
I, too, was diagnosed at birth with my aortic problem (leaky rather than stenotic) and knew my whole life that surgery would be needed eventually. My number came up about 18 months ago at the age of 38, when I had an aortic aneurysm fixed and my valve replaced with a bovine one. I went biological for a wide variety of reasons, but at our age, most dr's recommend mechanical and, as I understand it, this is backed up by slightly longer life (but with the difference measured in months rather than years.) My suggestion is to read up on the options, think about your lifestyle and you'll know the right choice for you.

That said, I wanted to speak to another issue you raised in your initial post regarding how you've been feeling over the last couple of years. I was also feeling like I didn't have my right energy, especially in the summer, and beginning to have some chest pain with exercise. Technically, I passed stress tests with flying colors so my cardiologist felt I was not yet symptomatic. I eventually insisted on seeing a surgeon and was scheduled for surgery within the month. Afterwards, he told me that my valve was extremely calcified and needed to come out when it did. I tell you this not to scare you, but to validate how you are feeling and to encourage you to consider getting a second opinion or even scheduling an appointment with a surgeon (I'm sure there are some top-rated heart surgeons in New York, but I don't know who they are! ) It really isn't a good idea to wait too long for surgery and, as many people on this site can attest, cardiologists sometimes have a tendency to delay longer than is appropriate, occasionally resulting in permanent damage. The way I see it, you will have to have this surgery in the next year or two anyway so what is the value in waiting if your quality of life is not what you want it to be? Especially because you describe yourself as healthy and active, it really doesn't make sense for you to be living with a declining valve when you've got three kids to run after. This is, of course, only my opinion, so take it for what it's worth! Best, Kate

 

[Superbob]

Caroline,

Welcome to the forum. In your initial post, you indicated your cardio was recommending tissue (either porcine or bovine). You might want to ask him why he wasn't mentioning the mechanical option. There might be some special reason in your case. Or maybe he just wasn't fully informing you.
My cardio never suggested one or the other, and my surgeon went carefully over all the options, but then left the decision to me.

Read the tobagotwo thread on value choices -- it presents a very balanced discussion of the pros and cons of the various choices. I'm sure you'll make the decision best for you.

 

[StretchL]

Hi, Caroline. Welcome to the family.

Given your age, your primary diagnosis (stenosis rather than regurgitation), and your location, I would suggest you contact Dr. Paul Stelzer at Beth Israel Hospital about your surgery.

Dr. Stelzer implants all sorts of valves, but he specializes in a more uncommon approach to AVR surgery, the Ross Procedure. Statistically, in the hands of an experienced surgeon (Stelzer has done more than 400) with an otherwise healthy patient, the Ross should leave you with an 85% chance of being free from a re-op after 20 years.

That's better than a bovine or porcine valve.

The mechanical valves could outlast the Ross, but you'd likely be taking an anticoagulant the rest of your life. Many here don't have a problem with taking the med, but there are definite risks, especially as one ages and encounters other medically procedures.

Because the Ross uses your own, perfectly formed pulmonic valve in the aortic position, the hemodynamics are unquestionably better than either transplanted tissue valves or mechanical valves.

The Ross isn't right for everyone, but in an appropriate patient with the right surgeon it's been called the "procedure of choice."

Of course I'm biased toward the Ross, and toward Dr. Stelzer. But I'm only about 14 weeks post op. Although I'm feeling like I never had surgery or heart disease (I was born with congenital stenotic bicuspid valve), who knows what will come down the road.

No matter which procedure you choose, you'll not find a more caring and dedicated surgeon than Dr. Stelzer. He spend nearly six hours on a Labor Day weekend Saturday talking with my wife and I about my condition. He truly puts his patients first.

I encourage you to do your research with great diligence. Sometimes the first or the easiest sounding answer isn't the best one.

I do wish you all the very best during your journey through and past surgery, no matter which valve you choose.

It ain't as bad as you probably think it will be!

 

[Marguerite53]

Welcome, Caroline! We're glad you decided to join us. Great responses, so far, and in particular, I like what Kate and Stretch had to say, so I'll try not to repeat.

As for your summertime issues. New York is very muggy. Perhaps it is true that your heart issues are making you retain water in the warm muggy weather. I want you to mention your experience to your cardio. He/she may put you on a mild diuretic. At the very least, put the salt shaker away (just let everyone else salt their own foods....don't use it for cooking pasta, or frozen veggies, or anything.....soy sauce, too....get the low sodium). I noticed a complete turnaround since surgery. I just don't swell up as much in the heat (it was beginning to feel somewhat like I was a puffer fish!!) However, now, if I indulge in overly salty foods, I am very tired the next day. I suppose I should just give in and do away with salt altogether, but I won't live that way. It is very easy to cut way back, though. Perhaps your workout beverages are high in salt, also, to counteract the loss of sodium through sweat. Since you've toned down your workout...have you toned down the gatorade?

I want to echo the notion of a second opinion (cardiologist) and the suggestion to consult a surgeon now. Just ask your cardio who he recommends for a surgeon, make an appointment and go see one! They will offer you a new wealth of information, and help you get more accustomed to the whole idea of surgery. My insurance said I could get as many opinions as I wanted....check to see what yours offers. I did the waiting dance (and I was very impatient to HAVE my surgery) and finally asked my cardio point blank exactly when she did call in a surgeon in cases like mine. With that answer, I really was able to wait more comfortably, because I knew exactly what was being used for criteria.

The difference between the tissue valves, as I understand it is that the bovine valve is designed from pericardial tissue of the animal (cow)....they use the tissue and model a device. The porcine valve IS the actual pig's valve which has been modified to fit into the human. For me, I never even considered mechanical...totally an instinctive call for me...no logical basis, probably. As far as which tissue, bovine or porcine....I just chose my surgeon first. I went after the technical expertise...the best mechanic in my town. I asked him which tissue valve he liked and (being the same age as me) he said he would put this one in himself, or any loved one, over any others he'd worked with. He does over 100 surgeries a year. That is an important factor...how many surgeries does your surgeon perform.

Okay, well, I'll give some space for others to answer, here!!

Nice to have you with us!

Marguerite

 

[Caroline2007]

My cardiologist was recommending tissue based on my age, that I would most likely have to have one more replacement whether I went with mechanical or tissue. Therefore the tissue valve would need to be replaced while I am at a younger age. My father in law is on coumadin and I have had a long talk with him about it, so I think I understand. After a few of the women's posts though I wonder if I need to look into female issues more (no - no more children).

 

[KarenS]

Hi Caroline,

Welcome! I only had a few moments to check messages and simply could not NOT respond to your post. Too many similiarities!! First off, I joined this site 2 months ago after "lurking" in the shadows for sometime as well. I am 41, have three children (ages 6, 4 and 2) and until 12 days ago had SEVERE aortic stenosis. I thought I was asymptomatic (doing low-keyed aerobic workouts, chasing my kids everywhere on a daily basis), but already notice my breathing is better so soon post OHS. I had my surgery on 3/5/07. This site is amazing! You'll always have a place to turn to ask someone something or research any part of your upcoming surgery. I have to run; I will post to you again soon. You did the right thing by coming out of hiding, again welcome!!!!!

Karen