New here - congenital BAV replacement coming right up

[Fundy]

The new St Jude mechanicals are comparable to the On-X in construction and have people using the lower doses with frequent testing as well,

I contacted On-X by email, I forget the exact address but I imagine their customer service would route your requests to the appropriate place.
Its [email protected]
Basically I asked if they had any record of any OnX valves installed at Halifax. They responded at the time that there was none but New Brunswick had three surgeons that did. So if you know your surgeons name you could ask how many if any he has done.

 

[Lynlw]

Jim,
I had mine done 4 yrs a nd 9 months ago at 44y/o. I chose ON-X because I'll be DARN if I'm going through that AGAIN. All in all, it wasn't THAT bad but not if I have a choice. The ON-X uses a lower theraputic level of Coumadin. I realize that flesh valves eliminate that issue but they last 10 - 15 yars. There is BUNCHES of mis-information about Coumadin use. I was a cop in Atlanta when I had the surgery and when I changed departments, I brought a letter from my Cardio, Surg and Coumadin Nurse all saying there was NO reason I couldn't do the job. I have shaved my head at least 5x a week while on Coumadin. With a regular razor that is!. Cut myself, had teeth pulled, etc. NO BIGGIE!
My mom is going through the same decision rght now. She is having a AVR tomorrow. The issue with her is that she is 71 y/o. That causes an issue. She doesn't like the 10-15 year replacement date on the flesh valve because at 80 to 85 she knows OBAMA care will NOT go for another surgery.
I have not read the previous posts but thought I would put my 2 cents in the pot.
Good Luck,
Greg

The chances of a tissue valve only lasting 15 years in a 70 year old are very slim. EVEN the earlier generation bovine valves with the anticalcification treatment were lasting 20+ years in over 90% of the patients 60 and older. Which is why most docs reccomend tissue valves in patients 60 and up, that and the fact most doctors and stats show a first time REDO are about the same as a first surgery. Also IF by some chance she did end up needing that replced 10-20 years from now, my guess would she,d be a good candidate to have it replaced by cath which are already being done right now. Another reason tissue valves are usually reccomended for patients 60 ad up is that is the age when Coumadin can be more risky. Also beside the concerns of clot or bleeding strokes, Coumadin does interfer in vit K from doing its other important functions, like bone density etc.

 

[Jeff Edmonton]

Check out this discussion, Bdryer and I went threw the same issues 2 years ago in Alberta. Good luck to both of you (oilman and JiFaire).

http://www.valvereplacement.org/forums/showthread.php?38579-On-X-Valve-With-Conduit-Attached

 

[neil]

hard decision and like many have said its tough, tissue you would be looking at a re op down the line in 10. to 15 years maybe longer,i didnt find the surgery to bad but others do, mech means anti coags and as you can tell by the forum a lot of discussions are on that subject, most on here do well but anti coags can cause problems,after insulin they are the second most drug blamed for hospital admissions, so thats not to be sniffed at, never the less both valves are better than the one you got now, choose yours dont look back and you will be fine

 

[JiFaire]

Jim,
I had mine done 4 yrs a nd 9 months ago at 44y/o. I chose ON-X because I'll be DARN if I'm going through that AGAIN. All in all, it wasn't THAT bad but not if I have a choice. The ON-X uses a lower theraputic level of Coumadin. I realize that flesh valves eliminate that issue but they last 10 - 15 yars. There is BUNCHES of mis-information about Coumadin use. I was a cop in Atlanta when I had the surgery and when I changed departments, I brought a letter from my Cardio, Surg and Coumadin Nurse all saying there was NO reason I couldn't do the job. I have shaved my head at least 5x a week while on Coumadin. With a regular razor that is!. Cut myself, had teeth pulled, etc. NO BIGGIE!
My mom is going through the same decision rght now. She is having a AVR tomorrow. The issue with her is that she is 71 y/o. That causes an issue. She doesn't like the 10-15 year replacement date on the flesh valve because at 80 to 85 she knows OBAMA care will NOT go for another surgery.
I have not read the previous posts but thought I would put my 2 cents in the pot.
Good Luck,
Greg

Hi Greg - thanks for the input... I'm really quite worried about the Coumadin and bleeding; I just KNOW I'm going to have more dental work, and pulling teeth with an anticoagulant in my system just seems like a bad idea. I think this is probably a case of "I know just enough to scare myself, not enough to be useful"... I'm revising my opinions on this by talking with people on here who live with Coumadin, including yourself.

I appreciate your "2 cents".

Jim

 

[JiFaire]

Check out this discussion, Bdryer and I went threw the same issues 2 years ago in Alberta. Good luck to both of you (oilman and JiFaire).

http://www.valvereplacement.org/forums/showthread.php?38579-On-X-Valve-With-Conduit-Attached

Hi Jeff. Thanks for the information and the link! I'm not needing any work done on the Aorta (so says the tests, anyway... what the surgeron says when he gets right in there is another story), but it's good to read about it, just so I know more about anything that might come up.

I'm finding that's one of the real hazards in all of this... surprises, and not knowing enough to deal with them intelligently. Doctor says 'X', and I know squat, so I have to go study and learn about it in order to make a decision. Then Doctor says 'Y', and I have to start all over again. All of you guys are helping to fill in the missing blank spots that connect all of these disparate pieces of information, and that's a great relief to us rookies! (I'm living for the Doc to say 'Z' and I already have either an answer or some good questions to come back with!)

 

[JiFaire]

hard decision and like many have said its tough, tissue you would be looking at a re op down the line in 10. to 15 years maybe longer,i didnt find the surgery to bad but others do, mech means anti coags and as you can tell by the forum a lot of discussions are on that subject, most on here do well but anti coags can cause problems,after insulin they are the second most drug blamed for hospital admissions, so thats not to be sniffed at, never the less both valves are better than the one you got now, choose yours dont look back and you will be fine

Thanks for this, Neil! I guess that's really the bottom line.

 

[dick0236]

Hi Greg - thanks for the input... I'm really quite worried about the Coumadin and bleeding; I just KNOW I'm going to have more dental work, and pulling teeth with an anticoagulant in my system just seems like a bad idea. I think this is probably a case of "I know just enough to scare myself, not enough to be useful"... I'm revising my opinions on this by talking with people on here who live with Coumadin, including yourself.

I appreciate your "2 cents".

Jim

Hi Jim. "I know just enough to scare myself" is a common thread for those new to warfarin(coumadin). I have never had anti-coagulation cause ANY "internal" or excessive injury bleeding in the years I have been on warfarin(45+) and I don't think I am a special case. There is a lot of scare language floating around. I have had a significant amount of dental work over my time on warfarin with NO excessive bleeding and little, if any, warfarin adjustment prior to a dental procedure.....most recently, four months ago, I had two side by side Molars pulled without any adjustment to my normal daily dose(5mg) and my gum bleeding was only a little longer than a "normal" person....and easily controlled.

 

[JiFaire]

Thanks, Dick! I've read your posts on Coumadin, and appreciate you sharing your experience with us. I'm finding myself becoming less freaked out by anticoagulation as time goes by.

That bring said, I still just hate taking anything.

I wish I could have lasted long enough for science to find the elusive 'one valve for life' that solved all the problems at once, but oh well ... I'll live with what I get!

 

[lance]

Good afternoon Doug and welcome to this very informative and helpful site where you have already been given excellent advice.
One thing I've noticed though is that the option of banking your own blood hasn't been mentioned by your practitioners. Maybe it's not needed by every patient. Just a thought.
You already know about home INR testing and are experienced with anti-coagulation and that's a big plus.
Hopefully you won't be kept waiting too long and have an uneventful recovery.

 

[Sheepdog1]

JiFaire,
As it is, I am sitting in the hospital outside the Cardiac recovery area. My mom is doing fine and, she did get a mechanical valve. She left this up to the doc depending on what he found when he got in. I was real suprised when he said he went mechanical. He did say that by this time next year he expected there would be several more drugs that would be approved to replace warfrin. So, if thats how you go, coumadin won't be a life long thing.

 

[pellicle]

l

60 ad up is that is the age when Coumadin can be more risky. Also beside the concerns of clot or bleeding strokes, Coumadin does interfer in vit K from doing its other important functions, like bone density etc.

Which isn't much of a help for folks like me that get a mechanical at 47

Of course I do know the reasons but the point you raised with vitamin K and bone metabolism is one that seems to seldom enter the threads of conversation

 

[JiFaire]

Of course I do know the reasons but the point you raised with vitamin K and bone metabolism is one that seems to seldom enter the threads of conversation

Vitamin K and Bone Density? AAaarrgghh... more stuff I need to learn about! Thanks a LOT, you guys!:mad2:

 

[lance]

Vit K and bone density is why it's so important to eat a balanced diet including food high in the vitamin K. I cringe everytime a poster claims they have been advised to avoid greens by their medical practitioner. Better by far to say keep up your calcium intake.

 

[dick0236]

Vit K and bone density is why it's so important to eat a balanced diet including food high in the vitamin K. I cringe everytime a poster claims they have been advised to avoid greens by their medical practitioner. .

This is very good advice. It is a lot healthier and easier to eat a good, well balanced diet and adjust the warfarin dose to that good diet.....never let the "tail wag the dog".

 

[pellicle]

+1 to both lance and dick there

 

[pellicle]

Jim, I don't want to seem stern, but really there are no conspiracy theories out there covering up horror stories. This stuff is really getting quite mature as a technology with hundreds of thousands of recipients.

Driving your car in traffic is probably as risky as post operative warfarin. As I mentioned even my dentist was surprised at the less yes I said less gum bleeding than before I was on warfarin.

I do understand that this is a serious challenge you are facing, but ... well some courage in that face of adversity only makes you a stronger person. When I went in last time I saw some family who were in for their daughter having a valve. All of them were alternately crying and wailing. I was almost inclined to speak with them but I do get tired of the "you wouldn't have any idea what we're going through " replies.


As I said, the mechanical valve thumps around sometimes, but you know when I'm out on my bicycle training I don't notice it. The post operative recovery is not to be dismissed as trivial. Did you want to look forward to another? Is that worth (to you and your family ) another operation in something like 15 years?

None of us heals better as we get older.

 

[JiFaire]

Sorry, Pellicle.. I wasn't hinting about any conspiracies to keep me in the dark I was trying (feebly) to make a joke about my pathetic level of knowledge... every time I start thinking I am beginning to understand, there appear a few new facts that make me start over again!

The frowny little smilie was my way of signifying my frustration on not knowing all that I need to know.

All things considered, I'm pretty happy with things as they evolve... the alternative to having this surgery done is dying, after all, and I have all of you for great examples of how well this can go.

Whether I pick a mechanical valve and ACT, or a tissue valve and re-op, I will be happy and looking forward to a new lease on life. Never think I don't know how fortunate I am to be alive in this day and age, where such things are possible, or that I'm not grateful that this was disgnosed.

And never think I'm not grateful for the advice and encouragement of all of the people here... because I am!

The problem here is that my sense of humour is not served well by this medium; no vocal inflection, no body language, no eye rolling and self-deprecating grin came through on post #33 ... but they were present when I was typing.

Sorry to have forgotten that.

Jim

 

[Rachel]

Hi Jim,

I've appreciated your posts! These are not easy decisions and your sense of humor will certainly serve you well!

Rachel

 

[DMS]

Hi DMS!

Thanks for the great explanation... Many of those details resonate with me, also. That second surgery at age 70 is a bit daunting, although there is hope for better methodology by then. Assuming of course that the first surgery goes well and things last appropriately.

Glad you surgery went well!
Jim

Hi,

Thanks for the nice comment. Sorry for the slow response. Not used to anyone replying to my few posts. Anyway, I have reached week 9 post-op and been cleared by the surgeon and cardiologist to return (sensibly) to exercising and weight training. This was a little ahead of schedule I thought but they were very clear that my current level of fitness (at seven weeks) was good enough to obtain their blessings. Due to the mechanical valve, I was also trying to stabilize the warfarin and luckily enough that has been good for the last 4 weeks hovering between 1.9 and 2.2. Like some previous posters, I eat whatever I want, but consistently. Alcohol is minimal at 2/day max. and I concentrate on "dosing the diet" and not the opposite. It works well and I am at 5mg. once daily at this point. More vigorous exercise may require some tweaking, but not yet. This has been much less work than I thought and the low range does not seem to be creating any issues. No increase in bruising and I am taking 3 anti-coagulants now. Plavix, ASA and warfarin. Small pokes and nicks do not seem to bleed much longer than before and I do not worry too much about it. Doctors were pretty unconcerned about it in discussion too. I am getting more than the daily requirement of Vit. K (80mcg) so future health should not be a problem of lack of that. I have found a list online of amounts of Vit. K in many foods and it is 7 pages long. A lot of foods besides greens contain pretty good amounts of it. So it is easy to figure out a good easy diet.

Anyway, just two more cents worth and hope you are getting enough information to make a choice either way. The best statement I saw here was that no matter what, either choice is better than what you are dealing with now.

Best of luck!