Bicuspid Aortic Valve Replacement - Tissue vs. Mechanical for a young guy

[tex4ever54]

Good luck Eddy

Good luck Eddy

Hello Everyone!

I am BRAND new to this site, and I'm sure there are other threads on this board that deal with this issue... but I wanted to put MY stoey out there and see if anyone could provide any advice, or better yet - experience that closely resembles my own.

I have a Bicuspid Aortic Valve, and Aortic Stenosis, diagnosed at age 5. I am 29 years old now. I have religiously followed my condition by making visits to the cardiologist every 6 months-1 year since the diagnosis. I have been with the cardiologist I have now for at least the last 10 years. at AGe 16 I underwent a Balloon Valvuloplasty to help the stenosis. it was successfull, although it left my AV with a leak. Basically this procedure put off my need for valve replacement for 13 years - as of today my trusted cardiologist has told me that now is the time for valve replacement surgery. We discussed this today after I had my second cardiac cath in 18 months today. One more note - I began having Atrial Fibrillation at age 19, and I currently take Flecanide (Tombocor) and Digoxin and Aspirin for that. for the most part I have no problems with the A-Fib now, as long as I take the medication.

Basically my question is this:
For someone my age (fairly young for a AV replacement surgery), should I go with the tissue or mechanical aortic valve replacement? I have discussed this with my cardiologist for years, and I have studied myelf about the pros and cons of each. here's how I see it:

Mechanical Valve:
-will last forever, but you bust take coumadin for the rest of your life

Tissue Value:
-no coumadin needed, but the valve will eventually wear out and need to be replaced, probably in 10-15 years.

other factors to consider:
1. Doc says that there are medications on the horizon that will replace coumadin, and these new meds do not require the consistent clotting tests that coumadin does

2. in 10-15 years when tissue valve wears out, they may then be doing valve replacements via catheder, so I can get a new valve without having another open heart surgery. and valve technology will surely have advanced by then too!

3. possibility that I could be left with A-fib after the VR surgery (doc says 30% do), meaning I may need to be on coumadin for that, so if I get a mechanical valve, I could still need to be on coumadin!!

4. I have heard and read reports of mechancal valves and their 'clicking' noise, and people regretting the mechanical value choice because of this. doc says that this was an issue in the past, but the latest generation of valves do NOT have a clicking noise that will annoy you, but rather can only be heard by putting an ear to the chest or stethoscope.

almost everyone I ask (my cardio doc, nurse, friends who workat cardio hosptials) how many get tissue and how many mechanical, tell me that it's about 50/50

If anyone out there near my age group has has this done and can tell me their experience, I would greatly appreciate it. I am having a tough time finding people my age that have gone through this decision!! Or even if you haven't had the experience but can shed some light on this subject that would be great too! AND, if anyone can provide me with more specifics on what I can expect for recovery - please do. and please take into consideration that I am a healthy, active, 29-year-old male who is always on the go. my music career is very demanding (live performances, on the road, etc), so I'd like to know when I can expect to return to that.

thanks in advnace for your help, and I promise future posts won't be this long!!! please feel free to email me also. I'm off to do more searhcing through threads

thanks,
Eddie

Eddy:

Just to let you know again , that you are not alone. My surgery is about 10 days away and I am still in the process of deciding which valve to go with. I am 50 and at first I decided to go with a CE perimount magna valve based on the reasoning that I could get maybe 15 years of coumadin free life out of it. Plus by then surgical techniques will be greatly improved, possibly doing it via catheter. Oddly enough, yesterday I saw on the news where the worlds first valve replacement was done via catheter. I was excited because it confirmed the thinking that open heart surgery might not be needed for valve replacement in the future. Suddenly the thought struck me (and I could be wrong on this I am not a Dr.) so what! For those of us who will have valve replacements , tissue or mechanical implanted now, getting a new valve in is one thing, getting the OLD one out is a different thing. I just cannot conceptualize how the old valve would be explanted thru a catheter. Anyway, at this point, I have decided to go mechanical, specifically an On-X valve. The reasons being is that it has the HOPE of someday being OK'd for aspirin only anti-coag therapy and I just don't like the thought of going thru the process leading up to OHS again. There are ongoing tests in Europe and some completed in South Afrika that show great promise. You can go to www.mcri.com or www.onxvalves.com for more info on their product. I am rambling at this point so I will sign off and let the real experts on the board comment. God bless you!!

 

[edjspi]

Hi Eddie:
I'm 35 had an AVR 2/3/05. Have a Carpentier-Edwards Bovine valve. I Work in longtermcare and see what coumadin does to the elderly, not pretty. Being in Bands my self (vocalist). I've known many drummers and know the abuse you guys put your hands and fingers through. Coumadin not only thins the blood it may make u swell in your hands, with the intense force you may use while u kit the skins. Alot of drummers joints get sore which could possibly lead to bruising. Hopefully in a few years the less-invasive AVR procedure will be widespread for us. Rock on Dude. Hope my perspective helps.
Efrain AKA Tucsonmoovalve

Hey Tusconmoovalve - thanks for the message... (and I LOVE your name by the way). It's been way too long since I've posted on here! It's been almost 1 year since my AVR (4/13/04), and I've just gotten busy with life again, and unfortunately coming to this site is one of the things that went by the way-side....
Your perspective DEFINITELY helps. I am VERY happy with my decision to get the CE bovine valve. Since my surgery I have joined another band, and now I play in 2 bands, equalling at least 8 gigs/month, and I play HARD. Most of the time I end up cutting a finger at least once during the gig on a cymbal or something.... so if I had to worry about that all of the time because I was on coumadin - it just wouldn't work. In fact, I just had a checkup appt with the cardio on Monday of this week, and we were talking about how we were both happy that I went through with the surgery now (even though I wasn't having many physical symptoms), and that I chose the right valve for ME. I was even being questioned by some docs (other docs that came in to see me) right after my surgery as to WHY I would choose a bio-prosthetic valve over a mechanical. And like you said, my cardio and I talked about our hopes that by the NEXT time I need to have the AVR done, hopefully there will be a less invasive procedure available to me!

Anyway, all is good, and now that I've gotten back in the groove, hopefully I'll be able to post here again more often. I'd like to hear from some others on here that were getting their AVR done around the same time I was last year too!

Thanks again for the post... and the perspective. Hello to everyone again on valvereplacement.com!

-Eddie

 

[parker]

AVR March 2nd

AVR March 2nd

I'm 54 and after alot of research I chose the Edwards Perimount Magna Bovine with Therma Fix. If it's good enough for Cosgrove it's good enough for me. Best of luck!

 

[Barry]

... I Work in longtermcare and see what coumadin does to the elderly, not pretty....

Hmmm. Have a St. Jude's mechanical, so I'm on Warfarin. Also have chronic atrial fibrillation, so I'd likely be on Warfarin, anyway. I guess I'm going to have to re-examine my health habits: While I'm stuck with Warfarin, becoming elderly is rather easily avoided.

Actually...

What do you consider elderly? If I wake up on my 70th birthday, my primary emotion will be astonishment.

 

[geebee]

Tusconmoovalve,

I am sure that there is a chance coumadin may cause thin and transparent skin but so does aging. Perhaps it has more to do with inactivity than medicine?

My mom spent the last 7 years of her life in a nursing home suffering from Alzheimer's. She was not on coumadin but had the thin, transparent skin you described. I have noticed thin skin on many elderly folks. So I would be hesitant to assume it is ONLY a coumadin issue although it may be possible coumadin could contribute. I would agree that coumadin could certainly be an issue should thin skin crack or tear as it would prolong bleeding.

Just my 2 cents.

 

[tobagotwo]

I'd have to agree that translucent skin is common in the elderly. I would not have picked it to be a byproduct of Coumadin usage.

Perhaps what you're seeing is more related to the reason why the person is taking warfarin, rather than the Coumadin itself. Such as for chronic atrial fibrillation or previous stroke: in an elderly person, that could lead to an very inactive lifestyle, and the results Gina is referring to.

Just a thought.

 

[bvdr]

I have to admit to having had my thoughts wander to the place where I am old and on coumadin. My thoughts are more of being sharp enough to remember to take my dosage every day (and only once). I have never connected the thin transparent skin as a companion of coumadin use but rather of old age. Both my parents had that type of skin. Dark blotches that look like ink blot psychology tests were frequently seen on my dad, on warfarin, but also my mom who never has been on the drug. If tape gets put on my mom's skin it takes the skin right off with it when it is removed. My mom is now 81. My dad died when he was 81.

 

[Barry]

I have to admit to having had my thoughts wander to the place where I am old and on coumadin. My thoughts are more of being sharp enough to remember to take my dosage every day (and only once)...

My plan for when I get too dotty to remember whether or not I've taken my dose or not is to once a week lay my doses out in those plastic boxes that have a little compartment for each day of the week.