New here and waiting on AVR, 4/25/06

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HarleyM

35 years old and was born with a bi-cuspid aorta valve. :( It was found when I was 16. Had a cath and the results were EF at 45% and heart enlarged(from birth) and moderate regurg AV. Pressures were normal. The Dr's wanted to replace it then. I was told to do no heavy lifting(anything over 20#), sports, ect. Well here I am 19 years later and still a-symptomatic.:D Never any problems doing anything. :D I am very active and work long hard days. Started seeing a cardio about 3 years ago to monitor my heart. At this time my EF was 40% and on 1 to 4 regurg, I was at moderate/severe 3.0 to 3.5. I had a cath and very little change from when I was 16.:) I have had 4 caths up to now and the last one is not good. EF now 35/40% and severe regurg 4++++ with slight enlargement over previous tests. All the tests show the time is now but I am having a hard time because of no symptoms.
I have met the surgeon and trust his opinion. He says now. Looks like I will get a mechanical and need to decide on which one. Leaning towards the St. Jude but also considering the ATS and ON-X. My surgeon don't have any info on the ON-X and has never implanted one(he has done 750+)I have been reading this board for several years from time to time and want to thank all of you for the wealth of information here. Any help from you veterans to push me towards replacement and for a choice of valve would greatly by appreciated. I understand that this would be your opinion and that is just what I'm looking for. This is such a hard decision for me and I feel it will change to way I live my life from 4/25 on out.

Thanks,
Harley
 
Welcome Harley!

Thanks for filling us in on your history. You took care of some questions that we usually ask.

As far as valves go....well... The St. Jude has long been considered the 'gold standard', but the ATS and On-X have been getting good reviews. One of our members, Randy, just had an On-X put in at Cleveland Clinic. He did a lot of research and actually asked CC to allow him to be their first On-X replacement. Representatives of the maker were there for the surgery. One of our more knowledgeable members, Tobagotwo, give a thumbs up for the On-X as well due to it's study into aspirin anticoagulation. I don't know anything about the ATS - others will, or do a search on it to find threads here.

Since you are going mechanical - a good place to bookmark is www.warfarinfo.com This is our member Al Lodwick's site on Coumadin (warfarin). He will be very invaluable to you and a great place to go for correct information. There are many myths about Coumadin that make it sound like a hard drug to take. We can help dispell those myths (if you've heard any) and assure you that your life will still be an active one.
 
A question you need to answer is your comfort level with risk. Are you an early adopter or do you like to wait until things are proven. Neither is right or wrong, its based on personality.

st jude has been used with great success for last 25+/- years but it requires coumadin and may tick louder than the newer valves, although this varies greatly.

Its possible the newer valves such as on-x may be better but risk is slightly greater as your surgeon has not done one yet and it has not been tested in the real world to extent st jude has been.

The great thing about on-x is the possobility of aspirin anticoag which would be huge, but also remember its in very early stages, things fall thru all the time, and again how comfortable are you with being one of those testers.
 
Welcome, Harley,
I can't add anything to what has already been said here, but I added you to our calendar and I hope you will stick around and get all the support you need from this great site. Wishing you the best.
Phyllis
 
Just a quick welcome to the site. If you have any more questions ask away.
 
Welcome Harley!

I am just north of you in Jacksonville. I too was not really having symptoms but the heart cath showed the valve was shot. However, I think the changes are so gradual that it probably difficult for us to recgonize them. My wife is the one who noticed the difference.

Karl
 
Welcome Harley,

All I can tell you is I have had a St. Jude for almost 12 years and it has been great. I am a pretty conservative person and like the tried and true. I hear the On-X and the ATS are good valves but I like the track record of the St. Jude.

Best of luck to you.
 
Welcome Harley!
Like you, I was born with a bicuspid valve and just had it replaced in September at age 38. I understand it feels strange to be considering such serious surgery when you have no real symptoms, but I want to encourage you not to wait. From the numbers you quote in your post, it really sounds like the time is now and, as I'm sure you know from your own reading, waiting too long can result in permanent damage or even, heaven forbid, death. Aortic valves are funny that way - you can go from fine to dangerously compromised in a short time. So, regardless of which valve you choose, schedule the date, okay? Your luck has lasted a long time but don't push it! (-: Kate
 
Hello!

My husband is 34 and had his bicuspid aortic valve replaced in Sept 05. He had a heart murmur from birth which was followed by a cardiologist since 98. Although having a suspected heart valve problem, no one ever gave him weight restrictions and he was into bench pressing rather big time in his twenties, and has a job that requires repetitive heavly lifting. He has cardiomegaly, also known as heart enlargement :) . Valve choice, as well as make and model can be a very personal decision. We really liked the idea of an On-X valve, but none of the surgeons at the facility he chose would use them (at the time of his surgery, this may be changing!!!).

Wising you all the best!
 
Not sure if you've heard this already, but your left ventricle compensates for such severe regurgitation by enlarging. Although you have no symptoms, it is so important to take care of your AV before the left ventricle is too severely damaged....it can't be replaced. Also, ascending aortic aneurysms are not uncommon with BAV patients (even after valve replacement)...especially with a history of weight lifting.
 
Hi Harley,

The valve choice is something everybody has to go through. Some of us didn't have a choice at all and are very happy with our results. :) All the valves approved right now are good choices whether it is pig, cow, bionic (mechanical) or kangaroo. (My surgeon told me he thought that would be the best for me so I could hop around the OR during cases as I am an OR nurse.) :) I thought I would lose my mind every time the coumadin issue came up and wanted a piece of the pig. I didn't have a choice and I am happy as a hog in the slop bucket. Coumadin really isn't that big a deal. But there are several members who have tissue valves and are doing great. The newer tissue valves are pretty amazing. We recently replaced one that had been implanted for 20 years. Of course, the patient was in his late 50s when he had his first replacement. Unfortunately it is true the younger you are the tissue valves just don't last as long. I argued with my surgeon for weeks but when I found out I had an aneurysm as well I was pretty content to let him tend to the business of choice. Just get a good surgeon and tell him about some of your concerns on the subject. You are not alone. Many here have traveled the same road, used different equipment and became well. You will too.
 
Hi Harley,

Welcome.

Had my first catherization at 16 also. Lived unrestricted until I started to develop symptoms at age 47: shortness of breath, chronic fatigue, excessive sweating.

Got my St. Jude five years ago. Took about a year to fully recover, but feel great now. Started doing triathlons a couple of years ago and now train five days a week.

Coumadin has been no big deal for me. Stable INR and no excessive bleeding or bruising.

Good luck,
Mark
 
Hi Harley!

Hi Harley!

"35 years old and was born with a bi-cuspid aorta valve. It was found when I was 16. Had a cath and the results were EF at 45% and heart enlarged(from birth) and moderate regurg AV. Pressures were normal. The Dr's wanted to replace it then. I was told to do no heavy lifting(anything over 20#), sports, ect. Well here I am 19 years later and still a-symptomatic. Never any problems doing anything. I am very active and work long hard days. Started seeing a cardio about 3 years ago to monitor my heart. At this time my EF was 40% and on 1 to 4 regurg, I was at moderate/severe 3.0 to 3.5. I had a cath and very little change from when I was 16. I have had 4 caths up to now and the last one is not good. EF now 35/40% and severe regurg 4++++ with slight enlargement over previous tests. All the tests show the time is now but I am having a hard time because of no symptoms. "

I have so many questions! You say you were born with a BAV, which was found at birth. How do you know that? I ask b/c my father, 75, was just dianosed with that. They always said he had a "murmur" and now they know why. My daughter also has a BAV, diagnosed at 3 months, and severe stenosis as well. They have always noted a murmur with me. Now I have a clue why.

What is EF?? Sorry, but I am pretty new too.

The heart enlargement, does this go away or change?? My daughter had a severe heart enlargement at 3 months, and again several times since. Doesn't it go back to regular?? I don't know, I am begging for info.

She is very active, been on the swim team for 7 years, no symptoms ever, pretty much. We only knew b/c we took her in for an ear infection when she was 3 mos, and they put her in ICU, then medivac'd her out to Children's Hospital. That was a shock!

My father has always been active, bicycled 100 miles several times, ran 10K's with me, was my scuba instuctor. They said it was a murmur, now they say it is BAV. I am active. Always they say I have a murmur. My father and my daughter have BAV. I am worried. What should I look for? There are things, but I ignore them, I am a single mom of four and I usually watch my kids' health like a hawk.

Sorry, didn't mean to hijack your thread, you just seem to know more than me, and I need help. Hugs.
 
A great big thank you to all of you

A great big thank you to all of you

That was exactly the kind of encouragement I needed.
I will post more later and answer the asked questions.
Going offshore Grouper fishing tomorrow and have a busy day working Monday. Maybe Monday night.

Thank you again,
Harley
 
Howdy neighbor

Howdy neighbor

I am just a few weeks ahead of you. I don't claim to know anything at all and took my advice from the veterans.

BTW I got a St Jude Regent(latest and greatest they say)

you going to a hospital in Ocala or are you coming to visit Orlando?
Keep in touch I get to Ocala a couple of times a month on bizz. Let me know, we can get together.
 
Randy, I'm going to have it done here in Ocala by Dr Kuykendall. I think I want the ON-X valve but he has never implanted one and has no info for me. How do you fell now compared to before surgery and was you having any symptoms ? I would like to meet you if your up this way sometime soon.

Thanks,
Harley
 
Welcome to the site!

I do not know much about the ON-X valve, but I have had the St. Jude Valve for over 3 years and havent had any problems, the hardest thing for me is going for blood tests when I am supposed to. Other than that I have no complaints.

I wish you the best of luck, there are some very knowledgeable people here to get great info from.

Mike
 
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