Making a decision on a valve

[ALCapshaw2]

And please keep in mind, that sometimes the surgeons get inside you and make a decision for you based on what they see inside. I don't think this is happening as much anymore (just haven't been hearing it here) but it is possible. In that case, it might be good to have a second choice lined up with your surgeon.

Marguerite

It happened to ME before I even knew to suggest having a backup plan.
That's why I encourage patients to have a Plan B as well as a Plan A.

Fortunately, my surgeon picked the valve I would choose today as my Plan B option and had the skill to put it in "well-seated and with NO Leaks" per my last TEE.

 

[kfay]

I have a porcine valve and don't take aspirin either. I was put on it after surgery, but developed a sensitivity to it, so my Dr's ok'd me discontinuing it. They said that most of the world (outside of the US) does NOT put their tissue valve patients on aspirin, so I should be fine.

 

[tobagotwo]

The aspirin is common. In the US medical community, it seems to be pretty standard that most people over 50 are put on aspirin, if they tolerate it well, heart disease or not. It would be misleading to say that it's tied to a valve operation (excepting that it means you now have a cardiologist, who is apt to suggest taking aspirin if your GP doesn't). I take aspirin,a nd it was from before the heart thing. The GP said, "You're almost 50, right? It's probably time for you to start thinking about taking a baby aspirin (81MG) every day." Like a vitamin. It's never (to this day) been actually prescribed for me.

And there's a world of difference between skipping an aspirin and skipping a warfarin dose. If you're at the cabin for a week and didn't bring the bottle of Bayer, who cares? If you forgot the Coumadin on the kitchen counter when you left for Bermuda, you're spending your first few hours on the island figuring out how you're going to get a supply.

For the vast majority of those taking aspirin, it's optional and noncritical. For those for whom it's not, it's usually temporary.

That's not to criticize Coumadin: it's just by way of restoring perspective.

Best wishes,

 

[donnamarie]

I am in the process of trying to decide to go with a mechanical or tissue
for my mitral valve that I will need to have replaced probably in the next
6 to 7 months. The drs. are saying to go with a mechanical due to my age
(51) yet I am on my third trial of warfarin and my bld. just doesn't thin
except on high doses and then I have other side effects. I'm leaning toward
a tissue due to not wanting the stress this causes me and will probably
get worse if I'm not thinning and I have a mechanical valve inside me! Any
words of wisdom. Have appreciated reading this site.

I was 51 also and my doctor suggested a porcine value. I went with what my doctor recommended. He's a top valve surgeon in the Philadelphia area and I figured he knew what he was talking about. He said that today they can last as long as a mechanical value. He told me not to believe everything you hear about mechanicals lasting forever. He also said that if/when it needs to be replaced, there will be procedures so much more advanced that may not require open heart surgery. After seeing the segment on GMA this morning, it seems that those procedures are on the horizon. I am not concerning myself with whether or not I have to have another surgery...who knows what the options will be in 15 or 20 years? If you're not getting this done for a couple of months, why not talk to a few more doctors? I loved the guy I went to for a 2nd opinion...if I hadn't already found Dr. Goldman, I might've used him. There are lots of heart surgeons out there...find one your comfortable with.
I do take an aspirin daily and cholestoral and BP meds.
Good luck with your decision!

 

[lbecker]

Yes, I plan to see another surgeon, and as you suggested maybe more than
that. I don't want to just look till I find what I want to hear, but want
info., as to what they have seen and suggest. Thanks for sharing your
age and valve type, sounds like it has been good for you. Is there a
difference in types of porcine or bovine valves, some that will last
longer than others or are they all considered the same?

 

[marie]

I have a tissue (porcine) valve and the medication I take now I was taking prior to valve replacement. I do not take coumadin nor aspirin. That doesn't mean I won't have to take it in the future.

I am not suggesting you have tissue only you can make that decision. I'm only sharing my experience.

Earline

 

[njean]

It happened to ME before I even knew to suggest having a backup plan.
That's why I encourage patients to have a Plan B as well as a Plan A.

Fortunately, my surgeon picked the valve I would choose today as my Plan B option and had the skill to put it in "well-seated and with NO Leaks" per my last TEE.

That happened to me as well & I was only 24 years old when I had my double-valve implants. I'm happy my surgeon thought mechanical was the way to go with me then & I've been on coumadin for 33 years without any real issues. It just became a part of my life.

But at the end it's your choice & what you feel most comfortable with. Good luck to you!

 

[needinfo]

Breakthrough video

Breakthrough video

This is exciting for those of us on the edge....hope I can hold out until its approved! Once on the page click video for breakthrough in cardiac care
Tom


http://abcnews.go.com/search?searchtext=heart valve surgery&type=

 

[Lynlw]

This is exciting for those of us on the edge....hope I can hold out until its approved! Once on the page click video for breakthrough in cardiac care
Tom


http://abcnews.go.com/search?searchtext=heart valve surgery&type=

This has been discussed alot here. Search percutaneous valve replacement. We actually talked to the doctors at Boston children about it 2 years ago, when Justin needed surgery 2 years after his pulm conduit valve was blocked, but it turned out his valve was fine, it was a section of his dacron conduit that needed replaced so they couldn't help him.
FWIW, I BELIEVE from what I've read so far at least, the valve this works best to replace as a REDO is the CE bovine valve, which if you are thinking of getting a tissue valve now in hopes of having it replaced in the future in the cath lab, be sure to ask your surgeon about what would be the best valve to get NOW that would make you a good candidate for this.

MY real hope lies in valves/conduits engineered of your own tissue, so hopefully THAT would be Justin's last surgery

 

[ALCapshaw2]

My understanding of the Percutanaous Valve Replacement status is that it is ONLY being used on High Risk Patients who would not be candidates for more conventional replacement through the sternum or minimally invasive techniques.

The Big Question in my mind about the procedure is how effective that valve will be. Since the replacement is inserted and sewn into your original valve, I wonder about it's effective area and how much blood flow it will allow. MY GUESS is that it will have reduced capacity compared with a valve that could be implanted via replacement surgery. I've not seen a definitive answer to this question to date.

 

[goffrey]

This is exciting for those of us on the edge....hope I can hold out until its approved! Once on the page click video for breakthrough in cardiac care
Tom


http://abcnews.go.com/search?searchtext=heart valve surgery&type=

The problem with this technique is it can only be used on patients who currently have a valve that is no more than 16mm in size....I contacted Dr Lock at Boston Children's Hospital who is part of the multi center clinical trial and was told by him that my son was considered "borderline" because his porcine valve was 16mm which was on the large side to qualify for this procedure so we went with the conventional open heart surgery.

 

[Lynlw]

The problem with this technique is it can only be used on patients who currently have a valve that is no more than 16mm in size....I contacted Dr Lock at Boston Children's Hospital who is part of the multi center clinical trial and was told by him that my son was considered "borderline" because his porcine valve was 16mm which was on the large side to qualify for this procedure so we went with the conventional open heart surgery.

I think that is for the Melody (medtronic) pulm valve (altho I think the 16 was on the small side)
http://www.clinicaltrials.gov/ct2/show/NCT00688571?term=melody+valve&rank=1
Inclusion Criteria:

Age greater than or equal to 5 years of age
Weight greater than or equal to 30 kilograms
Existence of a full (circumferential) RVOT conduit that was equal to or greater than 16 mm in diameter when originally implanted.
The CE aortic Sapien can NOT be "Native aortic annulus size < 16mm or > 24mm per the baseline echo as estimated by the LVOT" or you are excluded. http://www.clinicaltrials.gov/ct/show/NCT00530894?order=4
Altho by the time it is out of the trial phase, I'm sure they will have other sizes.

 

[goffrey]

I think that is for the Melody (medtronic) pulm valve (altho I think the 16 was on the small side)
http://www.clinicaltrials.gov/ct2/show/NCT00688571?term=melody+valve&rank=1
Inclusion Criteria:

Age greater than or equal to 5 years of age
Weight greater than or equal to 30 kilograms
Existence of a full (circumferential) RVOT conduit that was equal to or greater than 16 mm in diameter when originally implanted.
The CE aortic Sapien can NOT be "Native aortic annulus size < 16mm or > 24mm per the baseline echo as estimated by the LVOT" or you are excluded. http://www.clinicaltrials.gov/ct/show/NCT00530894?order=4
Altho by the time it is out of the trial phase, I'm sure they will have other sizes.

Good grief I think I had a brain fart! LOL! I meant no smaller not larger! Thanks for posting that! The sheath they use is quite large for children but would well in older children and adults....

 

[Lynlw]

Good grief I think I had a brain fart! LOL! I meant no smaller not larger! Thanks for posting that! The sheath they use is quite large for children but would well in older children and adults....

Did you see the video I posted of Locke doing it yesterday it was really cool? if not I can find the link

 

[goffrey]

Did you see the video I posted of Locke doing it yesterday it was really cool? if not I can find the link

I had watched the video before when I doing some research then watched it again after you posted the link! I have used Dr Lock in the past for one of my son's interventional caths.... I was impressed with him but not so impressed with the over all care at Children's of Boston....

 

[Ross]

Did you see the video I posted of Locke doing it yesterday it was really cool?

Darn it Lyn, quit posting porn.

 

[Lynlw]

Darn it Lyn, quit posting porn.

your no fun anymore

 

[Lynlw]

I had watched the video before when I doing some research then watched it again after you posted the link! I have used Dr Lock in the past for one of my son's interventional caths.... I was impressed with him but not so impressed with the over all care at Children's of Boston....

Funny I took Justin there a couple years ago when we were looking for a new Pc and surgeon (Norwood was Justin's origonlal surgeon). They were nice but... decided to go back to CHOP and go to Spray, which worked out even better since Boston was 5 hours away and CHOP 15 min (Plus it always botherred e before the Devon house parents had to sleep in their cars, all the money Boston made off heart families?)

 

[Sherry]

And please keep in mind, that sometimes the surgeons get inside you and make a decision for you based on what they see inside. I don't think this is happening as much anymore (just haven't been hearing it here) but it is possible. In that case, it might be good to have a second choice lined up with your surgeon.

Marguerite

This actually happened to me. I was 33 and going in for a repair of my mitral and ended up with a St. Judes. During the time of my surgery, I didn't have VR.Com and really had no idea what kind of different valves there were. I did meet a young lady, slightly younger than I, who had a cadaver valve, but other than that, I knew absolutely nothing. Now I'm 11 1/2 years post-op and doing fine.

Yes, I agree with some of the others, discuss two options with your surgeon just in case. It's really important to do your homework, which is something I honestly didn't do back in 1997.

 

[Lynlw]

This actually happened to me. I was 33 and going in for a repair of my mitral and ended up with a St. Judes. During the time of my surgery, I didn't have VR.Com and really had no idea what kind of different valves there were. I did meet a young lady, slightly younger than I, who had a cadaver valve, but other than that, I knew absolutely nothing. Now I'm 11 1/2 years post-op and doing fine.

Yes, I agree with some of the others, discuss two options with your surgeon just in case. It's really important to do your homework, which is something I honestly didn't do back in 1997.

Now be fair to yourself, it was almost impossible to do your homework in 97, unless you had a medical school library close, there wasn't much user friendly info online then