Pericardial Feedback for New Member

[Squashplayer]

Hello VR.com gang,

I've been reading your postings for a few weeks, and it's been very helpful, even a little inspiring if you want to know the truth, but this is my first posting. Here's my story in a nutshell:

60 years old. Male. Bicuspid AV. Severe stenosis recently diagnosed. Completely asymptomatic, even when very active (like playing squash). Shocked by diagnosis. No other medical issues at all.

AVR scheduled for May, 2005 (I'm writing on April 4). Smart, well-meaning doctors and friends are giving contradictory advice (nothing new for this group!). Some say the St Jude mechanical is a "no brainer" despite the dangers of coumadin, because the valve will last forever and let me stay active. Others say the Edwards Pericardial is a "no brainer" since it will last ~15 years, by which time surgery techniques will have advanced, and the risk of the second AVR will be less than the risk of 15 years on coumadin. (I'm very nervous about coumadin.)

Here's my question: Having heard or read a lot of stories (most of them very positive and reassuring) about the St Jude valve, I haven't heard nearly as much from folks who have actually experienced the pericardial choice.

Is there anyone out there with an Edwards Pericardial (or a Medtronic Mosaic porcine) who has had it for a while, is otherwise healthy and active, and is glad he/she made that valve choice? I'd love to hear from you.

Thanks in advance for your feedback.

 

[Marguerite53]

Welcome!

Welcome!

Welcome to the forum! I can't help you since I'm still at moderate AS (for a bicuspid aortic, too) but there are many people here who will be along shortly, I suspect. If you don't hear from Bob soon (Tobagotwo) try a personal message or email (you can just look him up on members list) as he is very opinionated and wonderfully literate!! He has a tissue valve and loves it.

Since I am hoping to go tissue as well, I'll be happy to hear from those recipients as well.

Good luck. Keep reading and posting any questions.

Marguerite

 

[wpribyl]

Nov. of 2004 I went through your agony. I did alot of checking and decided on the Edwards Magna Valve. The research on the old pericardial valve had 80% still working after 17 to 20 yrs. The magna is supposed to be 44% better???? I am 56 and an avid water and snow skier and was also afraid of rat poison. I realize that 4 and a half months isn't much, but I'm doing everything I did before and only have to take a regular aspirin daily. Check the Cleveland Clinic They now put in mostly tisssue valves. I didn't get mine there, but they are pioneers.

 

[Phyllis]

**** is almost 1 1/2 years out from an aortic tissue valve and feels great. He is 71 and plays tennis daily, golf once a week, boats in the summer and rides his bike 12-15 miles.
He had the Edwards Magna Valve and he too is hoping that advances will mean a less invasive procedure if he is lucky enough to need another one in 15-20 years. His optimism comes from the 101st birthday we will celebrate for his father this month.

 

[Cooper]

Welcome.

I can't offer too much advice here as I'm new to the valve world but I recall our surgeon saying that you still have a 3-4% chance of clotting or having a complication while on Coumadin. I've no idea how true this is for most people. On the flipside, I've read that the St. Jude valve has "a low thromboembolism and thrombosis rate and currently serves as the de facto gold standard against which all other prosthetic valves are judged." Tough decision...

 

[geebee]

....he too is hoping that advances will mean a less invasive procedure if he is lucky enough to need another one in 15-20 years.

Well said and a great perspective.

BTW - welcome Squashplayer. I can't answer your quest for answers on the Edwards or Medtronic but I did want to say welcome to the family.

 

[hensylee]

welcome, Squash. Nice to have you aboard.

 

[charlie b]

Old Surfer Dude

Old Surfer Dude

Hi Squashplayer, Your story is very similar to mine, 56 active male, no sympthoms. I found out through a routine physical and the follow up testing on Jan 28, 2005 that my arotic valve was shot. Surgery on March 23, I am only 12 days out, doing great! To each his own, but I choose the Carpentier Edwards Perimount Magna. Was not afraid of Coumadin but prefered to live without it if possible. I am a very active surfer, compete in the 55-65 age group at the national level. We travel a bit, and wanted to be as worry free as possible. I told my doctor that if for some reason once they were doing the surgery, if the Mechanical was the best choice because of some unknown problem, to go ahead and do what he had to. As it turned out they put the Magna in and I am well satisified. I realize that another surgery may be in my future but for me that is acceptable. As you said hopefully in 15 years (God Willing) the procedure and materials may be different. For now my decision was right for me. I suffered through a few weeks of indecision, but at some point my decision became very clear and complete. Also being fairly well conditioned my recovery is going well. Best wishes, May God Bless You, charlie b

 

[epstns]

Hi, Squashplayer, and Welcome!

I'm in a situation not too distant from yours - 57 years old, active runner/jogger (20+ miles/week), mild weight training, etc., and also have a "probable" bicuspid valve diagnosed from a detected murmur at a routine exam. I've only known about my situation for a couple of years, but have now progressed to "moderate to severe" and have been told to expect surgery in the next "2 to 4 years." Obviously that's an educated guess, but I am interpreting it a sooner rather than later.

My current choice, after discussion with my cardio, would be the St. Jude's mechanical -- after having other family members deal with coumadin, I don't find it that daunting. Of course, I'm not engaged in a sport like surfing or squash that may invoive injury. Therein lies the added risk that may make the tissue valve more attractive for you.

When it comes to expectations for future surgical techniques, in the US I would consider the relatively slow pace of the approval process for new ideas, and the fact that nothing major is currently in clinical testing (catheter implantation isn't that far along yet. . . ) to indicate that in another 15 years or so, when I would calcify a tissue valve, the surgical processes may not be much different than they are now. (I could be wrong here, so if anyone knows something, please share!) This would keep me tending toward the mechanical, barring lifestyle issues that might make one more prone to injuries.

Of course, this is just the $.02 opinion of a non-medical consumer. . .

Again, welcome. It is good to have others around who don't think we have to act older as we get older!

 

[charlie b]

Peter Pan

Peter Pan

Steve, a few years ago while engaged in a community project, and older lady after evidentially becoming tired of my "playing around". Asked me in a rather irratated manner if "I was ever going to grow up". I responded that I certainly hoped not. I have had a fairly successful career, raised 2 fine sons, maintained a good relationship with my wife, paid my bills and taxes all without the misfortune of growing up. Once we decide we are too old to play, we have become our own worst ememies. Life is serious enough on its own (open heart surgery, etc.) without us adding our own negative spin on everything. Squashplayer and others like him encourage me to continue to enjoy life, even now with a few replacement parts. God Bless you guys, "keep on truckin" as they used to say. charlie b alias/Peter Pan

 

[starkone]

Hello Squashplayer

Hello Squashplayer

I am three weeks post op with AVR. I had a magna valve put in. I was an active tennis player, traveler, etc before this diagnosis. I (for some reason) did not even consider a mechanical valve for myself. I did not want to be tied to coumadin and all that goes with it for the next 15-20 years.
So far so good with the valve. The doctor I chose at Brigham also has this valve and chose it for himself at a much younger age.....so that sold me.
I think that this decision is the hardest part of the whole surgery. Once you make your decision just be happy with it and know that it is the right choice for you.
Karen

 

[Squashplayer]

Thanks from Squashplayer

Thanks from Squashplayer

Hello Threadmates,

Thank you all for sharing your thoughts and experiences, and for the warm words of welcome. This is an amazing group. Hank deserves a Nobel Prize for getting it started.

Having digested all that you've said, along with a few private e-mails from Tobagotwo and Hank, and a mountain of information from doctors and friends and the internet, and listening to my incredible wife Nancy and others in the family, I THINK I am going to opt for an Edwards Magna. I undertstand that coumadin fears are often overblown, but I'm just OCD enough, and self-aware enough, to know that I would be fretting about it every day (and driving others crazy).

On the other hand, like Charlieb, I'm comfortable letting my surgeon (whom I greatly respect) make the final decision on the table, and if the tissue valve won't work for some reason, I'm OK with that. I appreciate epstn's note of caution about future surgical advances and his and others' calming thoughts about coumadin. (I can contradict myself at the drop of a hat!)

As I said earlier, surgery is scheduled for May 2. Like others in this group, I'm going ahead despite being completely asymptomatic in order to prevent the inevitable -- LV hypertrophy, ascending aortic aneurysm, or worse. But it is very spooky, and very frightening, to have OHS on my calendar while feeling so good.

Thanks again for your insights and your sweet wishes. I feel as if I've made about 1,200 new friends.

 

[geebee]

Glad to hear you have made your decision. Now you can focus on getting ready for surgery and spending time with your loved ones.

I had added you to our calendar. Please try and have someone post for you after surgery.

Take care.

 

[Sherry]

Hi, ,Squash. I'm a little late here, but welcome to our wonderful forum. You can't find more knowledgeable people than our VR members. Best of luck to you as you go through this process and please keep us posted. Just as an aside, I went in almost eight years ago for a mitral repair and came out with a St. Jude's. It's good that you've done your research and know what you want. I was terribly uninformed and just went with what they told me. Knowledge is empowerment for sure.

 

[charlie b]

Future questions

Future questions

Squashplayer, I like your attitude......as the days go by you will come up with other questions. I found out that a few minutes on this forum would answer my questions and calm me down. You like myself will be recovering during a great time of year, all of nature is bursting with life and it has a very positive effect on me. Plus your walking will be done in mild weather. The doctor says I will be back on my surfboards in June, (3 months post-surgery), so it sounds like your squash buddies will be seeing you again in the near future. I am experiencing some soreness, and tiredness but other than that my recovery is going great. Actually I had over estimated the time it would take to be where I am today. My flexibility is not nearly as bad as I expected. My wind certainly needs work, but the walking and my little plastic breathing friend are helping. To sum it up, I have very high hopes for the future! I now call myself "second chance Charlie". adios charlie b

 

[Marty]

Another reason....

Another reason....

I have a mechanical St. Jude, take Coumadin, and have done OK. But I've been lucky, no other health problems, no need for surgery. I have a friend who had a tissue valve about the same time I did who devloped pancreatitis. He needed surgical drainage and all kinds of support to pull through at age 79. I honestly don't know how they would have managed his case if he was on anticoagulants. There are also problems if you need colonoscopy, a gall bladder operation, etc.I'd vote for tissue too if I were you. All the best. See you on the other side.

 

[inlaguna]

I'm late to reply too, but wanted to say I was undecided until about a week before surgery. Many opinions from many sources. I chose the Edwards Magna for most of the same reasons you have already heard. I wanted the freedom from coumadin and I am pretty active and afraid I would bang my head too much for the medicine. At 41, I can only hope to get 15-20 years out of my valve.....I was hoping more around 12. When it comes time to choose again I am betting on a few more choices , but if not, I 'll go with it.

Welcome and best of luck with everything


dan

 

[Randy'38]

From a Former Squash Player

From a Former Squash Player

Hey, Squash Player:

I'm a tennis player now, but I started out as a handball player, then went to racquetball when I couldn't find any handball players, then to squash when it became nearly impossible to schedule a court with everyone playing racquetball. I played with some Canadian guys for two years, but when they left, I couldn't find anyone else, so I switched to tennis. They've since switched the squash court to an exercise room so I don't ever epect to play squash again (but I've kept my racquet just in case!). I see you're from Connecticut. I guess the Northeast is the only place squash is still being played.

Anyway, about the valve selection. I had an Edwards pericardial installed last July. I had the same questions about valve choice (I was 65), but decided to go with the tissue valve. I'm glad I did. I'm continually scratching, scraping, bumping, or outright cutting myself doing everyday things and when i do I bleed like a stuck pig. I shudder to thing what it would be like on Coumadin. All my relatives lived into their mid-80's, so I'll be happy if my valve lasts me that long.

Welcome to this exclusive club. We're here for you.

Randy