Edwards SAPIEN transcatheter heart valve

[Hannes]

Hello all!

Lucky to have found this forum! Very interesting information and helpful pre- and post- surgery stories!
I was born with a biscupid aortic valve, which worked fine until just now and was only recently discovered during a MRI (they recognized the calcifications), which I had after a small kindney stone gave me a hard time for a couple of days last summer. The follow-up testings revealed the defect aortic valve (biscupid, severe stenosis: 1,2 cm2 and light insufficiency). I am sceduled for aortic valve replacement this november and will have a first meeting with the surgeon at the end of this month (august 2009). All I know so far from talking on the phone with him is that he´ll go for a minimal invasive procedure, using a catheter and inserting a Edwards SAPIEN transcatheter tissue heart valve (Tri- leaflet bovine pericardial tissue treated with their "new" ThermaFix process). Since I live in Switzerland, this product is allready cleared for the market here, which is- from all that I read- not the case in the US yet, but I might be wrong on that.
I was so happy about not having to face open heart surgery that I forgot to ask him, why he would recomment this procedure in my case. Since I am only 28 years old, athletic and in an overall good condition, I was allready starting to be comfortable with the thought of having open heart surgery and receiving a mechanical aortic valve replacement (thought about an On-X, or St. Jude medical mechanic valve).
I read about studies that "predicted" a lifespan of up to 20 years, or even more for those new valves, but most info you get on those are from the companies themselves and are surely to be evaluated carefully. One big advantage seems for me not having to take Wafarin/Coumadin (Macumar in Europe) and of course the less stressful surgery process and recovery time that they promise.
The issues I am worrying about is whether I will be able to be as active with one of those new tissue valves, as I would with a mechanical one and if the replacement is a big issue at all in the future.
I am a little afraid of being used as a long-term-test-candidate for this new valve and would like to hear from others in my age-range who underwent this surgery.
Thanks a lot and greetings from the swiss alps!

Hannes

 

[Ross]

Welcome to the insane asylum!

You are correct about transcath replacements here in the U.S.
Currently, that is reserved for only those people who could not endure the full blown OHS. You have to be really sick to get it done that way. People keep posting here that it's something that will definately happen in the very near future, but they need to understand that many things were supposed to happen in the "Very near future" that didn't. We have to live with what's available now and not base decisions on what may be down the road.

Once yours is replaced, you should be able to lead a normal active life. Not sure I like the idea of tissue for someone your age, but since your not getting the full blown, saw the sternum in half deal, it might not be a bad thing. I'll be interested to see how you do, so keep us posted.

 

[Bridgette]

Hey Hannes, welcome and good luck for your procedure.
Hope all goes well - let us know how you get on.

 

[Marguerite53]

Welcome to our wonderful community.

The good news is that you have plenty of time to weigh out your options. The meeting with the surgeon should be very helpful to you. I think it is very exciting that these kinds of procedures are occurring for the general need population. What a fantastic option!

That said, it is so new, one would want to be cautious. One of the things we promote here is that the patient finds out just how many times the surgeon has done the particular procedure. Experience is key. My surgeon was very frank with me and said that if I wanted (or needed, which I didn't) a stented aortic valve he would have sent me elsewhere....he said he fumbled around with them a bit and feeling awkward with them, had chosen not to ever use those. To me, that put a very human element into our relationship and I trusted him completely after that. Others may have gone running!! So try to put together a really good list of questions for the surgeon and take that paper in to your visit. Mark off each item with a pen. If you walk out of the office and down the hall and come up with more questions, stop and write those down and either go back in, or call him up after you've digested all the information for a few days. This is all very heady stuff to get your brain and thoughts around. Some of your reaction will just be gut reaction -- listen to your gut!

I am curious about your 1.2 cm squared being considered severe stenosis. I was hovering in the 1.3 range for several years. It is true that in many of us, once it starts to close up (once it gets down to 1.0), it closes up rather quickly (over several months). But my cardiologist would not recommend a surgical visit until my valve closed down to .7 cm sq.. Other things got in my way at that point and I was "critical" at .53 cm sq when the surgery was performed. I did not suffer any ill effects from that. But I am not in my 20's!! Perhaps it is different. Please ask him about that, though. Perhaps there are different guidelines for the newer procedures.

Thank you for joining our group!! Your English is fantastic!

Best wishes.

Marguerite

 

[Mary]

Hi, Hannes, and welcome!
Your story is very unique with its implications for valve replacement for those of us who expect to have a tissue valve swapped out at some point in the future.
I don't think there will be any problems with your athletic endeavors with the valve you're receiving.
Please keep us posted throughout your valve replacement journey.

 

[Hannes]

Thank you so far for the great info and wishes. I´ll write down that list and listen to my surgeon- and my guts of course! And thank you for the english- compliment, Marguerite. In fact I went to school in the North West in my senior year. Not in Oregon, but in northern Idaho near Coeur d'Alene. Hearing about the different evaluations of the severity of the stenosis is particulary interesting. I thought, I am facing sudden death with my 1.2 cm sq. I guess, I overreacted there. ;-)
I'll keep you updated.

Bye,

Hannes

 

[Marguerite53]

Hannes. We ALL think we are facing sudden death at first!!! This is scary stuff. And the surgery, no matter what kind we choose, is daunting until we get through it and realize that it was all quite manageable. Not a picnic, and not fraught with certain challenges sometimes, but there are a whole lot of us here talking about it so survival is virtually assured.

I edited my previous post to add some comments about the valve size.

How lovely that you've been to our great Northwest!! Idaho is gorgeous though possibly not quite as sophisticated as her sisters Oregon and Washington. I speak of the metro centers, of course, Seattle and Portland. I am in the Portland metro area and we think we are just the current rage in everything!!

Keep posting, keep reading, keep thinking!! But smile -- this is all going to work out beautifully for you.

Marguerite

 

[john79t]

Hannes
I am 5 weeks post op from getting a Carpenter Edwards Paramont Bovine valve. Full chest cut OHS. I was at .8 when I had surgery. If the transcath had been available I think I would have done that. If I need another one in the future perhaps it will be available.

 

[Bina]

Hello and welcome!
Europe is very advanced in medical procedures, you will do well.

 

[buncle]

The future is not 5 or 10 years away for you-it is right now.how many people on this forum given the choice you have would say "lets go with the old way and crack my chest open and deal with all that goes with that?" If I felt good about the dr. I would do it in a heartbeat!

 

[Jkm7]

Hi Hannes and Welcome.

I had my second OHS in four years about 17 months ago. I have an Edwards Mitral Bovine Tissue valve and have absolutely no limitations. If I "can" do it, I am permitted to do it using common sense, of course.

If valve replacement by catheter had been available to me, I would have jumped on it.
My Massachusetts General Hospital (always one of the top five heart centers in the U.S.) surgeon told me there is little question most valve replacements will be done by that method in the near future. Brigham and Womens's Hospital and Mass General in Boston are both studying and doing them on very ill patients.

If you have confidence in your surgeon, that is the most important and if you do not, find a different surgeon IMO It is critical you have absolute trust in him/her.

We all will be so interested to hear your experience in Switzerland whether by cath or open chest surgery. You should be absolutely fine. The wait and anticipation is the worst part for most of us.

Best Wishes......

 

[netmiff]

Hi Hannes, and welcome to the zoo!

I was 52 years when my aortic valve was replaced, it was bicuspid, but no-one knew that until the surgeon had it in his hand - even my family knew before I did. I chose a mechanical, but I am the world's biggest coward, and did not want to face surgery again in 15 or 20 years at 70 or 75 years old.

Most of us find that the anti-coagulant is more of a nuisance than anything else, you have to remember to take your meds every day and so on. If you check the active lifestyles section, you will find members there doing all kinds of activities and professions. Our fearless leader, Hank, has even gone sky-diving. You may want to be a little more cautious, I wear a helmet when riding my bike, for example, even just going to the grocery store.

From what I have read here and at other sites, the tissue valves are said to last that long in a person who is around 65 years old at the time of replacement; the younger you are, the less long they last. This is not a hard and fast rule, but more of a trend.

In the end, it is your decision, and whatever valve you choose will be the right one for you. But don't let your surgeon talk you into a tissue valve; you are right, he may just need the stats for a paper he wants to publish, or to set the record for the most catheter replacements . Read, read and read some more, then maybe even get a second opinion from another surgeon, too.

By the way, your English is really good, and although the majority of members here are from USA, we have a few other nationalities represented. I myself am Scottish, living in Canada, and we have members from Australia, New Zealand, Colombia, Britain, Japan, South Africa and I am sure you will "meet" our wanderer, Chou Dofou, lately of China, but currently in Thailand, I think.

 

[Hannes]

No catheter- I guess.

No catheter- I guess.

Hello again!

I had my first meeting with the surgeon this morning (an other one than the one I talked to on the phone) and it was quite a surprise for me. Catheter wasn´t mentioned first and after i asked, he told me that he wouldn´t recommend it for a patient my age, since the bio-valves that can be inserted via catheter wouldn´t last as long in a young patient in my age as in an older one, which was just what I had read. That was quite a dissapointment after what I had heard on the phone.
He then let me choose between going minimal-invasive and inserting an "ATS open pivot" mechanical valve, or talking to a collegue who does the "Ross-procedure" frequently.
I will meet with the "Ross- surgeon" soon and will then decide which way to go. Do you have any suggestions? For me, it seems that I have to choose between a minimal-invasive surgery, lifelong anticoagulation (in some studies patients with ATS open pivot valves could have INRs between 1,5 and 2), but possible freedom of re-surgery, or a more complicated and more risky surgery, but without the Cumadin and a resurgery of the bio-prothesis in the lung-position in around 20 years.

I could flip a coin...


Bye,

Hannes

 

[Mary]

Hello again!

I had my first meeting with the surgeon this morning (an other one than the one I talked to on the phone) and it was quite a surprise for me. Catheter wasn´t mentioned first and after i asked, he told me that he wouldn´t recommend it for a patient my age, since the bio-valves that can be inserted via catheter wouldn´t last as long in a young patient in my age as in an older one, which was just what I had read. That was quite a dissapointment after what I had heard on the phone.
He then let me choose between going minimal-invasive and inserting an "ATS open pivot" mechanical valve, or talking to a collegue who does the "Ross-procedure" frequently.
I will meet with the "Ross- surgeon" soon and will then decide which way to go. Do you have any suggestions? For me, it seems that I have to choose between a minimal-invasive surgery, lifelong anticoagulation (in some studies patients with ATS open pivot valves could have INRs between 1,5 and 2), but possible freedom of re-surgery, or a more complicated and more risky surgery, but without the Cumadin and a resurgery of the bio-prothesis in the lung-position in around 20 years.

I could flip a coin...


Bye,

Hannes

Flip a coin!

 

[Pat]

Tissue valve replacement

Tissue valve replacement

I have a question. Has anybody ever had a tissue valve replaced through the catheter method and then is it possible after the 10 to 15 years when it needs to be replaced again to do the same type of procedure?

Pat

 

[briansmom]

That's too bad about not getting the catheter valve. You really had my hopes up for that technology. Like Pat, I am curious why he couldn't just do the same procedure when the valve calcifies. My son got an On-X aortic valve 3 years ago when he was 16. Unfortunately, his heart was already damaged before they were able to get him fixed up and his heart function is fairly low. In spite of that he bounced back from his surgeries pretty quickly.

 

[netmiff]

It really is down to the flip of a coin . . . However, there is no guarantee that with a mechanical valve there will be no re-surgery, things can go wrong with them; and there is no guarantee that with a tissue valve you will not need to be anticoagulated, a-fib is always a possibility after valve replacement.

Don't fret too much about anti-coagulation - you Europeans are light-years ahead of us in North America, where home testing is just starting to get some recognition from the medical community

 

[Cooker]

Welcome to the zoo ... coumadin/warfarin is no big deal ... at your age I would personally go mechanical ... best chance for no further heart surgery but valve type has been debated since the inception and will be long after I’m gone, at which time I will donate my St Jude to anyone who wants it, might save them a few bucks ... I just wanted to pick whatever would give me the beat shot at no additional surgery ... you never know what your health will be like 5, 10 or 20 years down the road ... good luck with your choice.

 

[Lynlw]

I have a question. Has anybody ever had a tissue valve replaced through the catheter method and then is it possible after the 10 to 15 years when it needs to be replaced again to do the same type of procedure?

Pat

They have already replaced cath pulm valves with new cath pulm valves

 

[ken taylor]

At you age MY choice would be ON-X Im in the waiteing stage and my stats are a little worse than yours 1.cm2 And they will not do the surgery. But if it happens this year or next. Its the choice for me and im 60 years old and walk 3oo miles a month. Ken