AVR selection

[Jeri]

Hi Bryan,

You certainly have been through alot of turmoil. I am well aware of other reasons to go on Coumadin. I had an arrthymia a couple years ago but it was more PVC and PAC with a SVT according to the holter results. I kind of made my mind up for having the tissue valve but it is not craved in stone. I will discuss it with the surgeon and will probably go with his recommendations but my family doc and cardio feels the tissue valve would be better for me considering my lifestyle. Only God knows the best decision so I pray alot and ask for direction. I am hoping for this direction in my doc's advice and in my "heart". It may not sound logical but it is to me. It's all about faith. I know it is possible for this valve to last long enough for FDA to approve the percutaneous valve replacement. But if it doesn't, then OHS will be a reality. I will address that when the time comes. We have to play the cards we're dealt, right. I know I would have a problem with the sound of that ticking too. It drives me crazy if I lie on my left side and hear the normal beating...lol. I can't imagine that clicking sound!!!! Stay in touch. Thanks for your post. You will be in my prayers.

Jeri

 

[ALCapshaw2]

Hi Bryan,

I can't imagine that clicking sound!!!! Jeri

For most mechanical valve recipients it is NOT a "clicking sound",
but a 'soft thump' that many find reassuring if/when they can hear it.

At age 58, you are in a 'gray zone'.
If you want a tissue valve, ask for one.
Do what you feel most comfortable with and don't look back.

 

[Jeri]

For most mechanical valve recipients it is NOT a "clicking sound",
but a 'soft thump' that many find reassuring if/when they can hear it.

At age 58, you are in a 'gray zone'.
If you want a tissue valve, ask for one.
Do what you feel most comfortable with and don't look back.

Thanks for your post. I am happy to hear that the sound isn't so annoying as I have heard from others. That makes me feel a little better if the doc wants to go in that direction. That sound and the Coumadin was becoming the deal breaker for me. I appreciate your post. I was told at age 58, it could go either way. I am leaning towards tissue. I will stay in touch. Thanks again.

 

[dtread]

At age 58, you are in a 'gray zone'.

I don't agree that 58 is a 'gray zone'. At 58 with a tissue valve the recipient is faced with a reop somewhere around 70 - 75. And at 70 - 75 heart surgery is a lot harder and riskier than at 58. Plus there is the scar tissue to contend with. Also the medical bills (which at that point one would expect to be covered at least in part by Medicare/Medicaid). Then there is the recovery downtime, which will be longer and more prolonged. If the recipient at 58 would only be expected to live to about 70 - 75 then I would say they are in the 'gray zone". What I am saying is that only if somebody would not be expected to live much longer than whatever the life span of a tissue valve is would I consider them to be in a 'gray zone'.

 

[ALCapshaw2]

Thanks for your post. I am happy to hear that the sound isn't so annoying as I have heard from others. That makes me feel a little better if the doc wants to go in that direction. That sound and the Coumadin was becoming the deal breaker for me. I appreciate your post. I was told at age 58, it could go either way. I am leaning towards tissue. I will stay in touch. Thanks again.

AH Yes, "the Coumadin" issue....

There are a Lot of Horror Stories about Coumadin, mostly based on the 'Bad Old Days' before INR testing was developed in the early 1990's (which greatly improves monitoring and control) and just plain POOR MANAGEMENT by Doctors or Nurses who do NOT understand how to manage Coumadin and often over-react to Minor out-of-range INR readings (often telling a patient with an INR between 4.0 and 5.0 to HOLD 1 or 2 doses which most likely will cause the INR to Drop Like a Rock and then they get into a Roller-Coaster effect as the Doctor / Nurse alternately Under Doses, then Overdoses and NEVER seems to get back to a stable INR). The VAST MAJORITY of problems with Coumadin are a result of POOR MANAGEMENT by ignorant or out-of-date medical practicioneers.

Studies have shown the the Best / most stable results are found with Home Testers who Self Dose from modern Guidelines which do NOT utilize Radical Changes. Many home testers monitor their INR on either a weekly or bi-monthly basis which ensures that any out of range situation is found early and treated early.

The next best / most stable results come from dedicated Coumadin Clinics that treat Large Numbers of patients with properly trained Nurses or Pharmacists, typically testing every 4 weeks for stable patients and 2 weeks after making dose changes. My local Coumadin Clinic has 4 Certified Registered Nurse Practicioneers who are Well Trained and 'Know their Stuff'. They follow 1500 patients with Excellent Results.

'AL Capshaw'

 

[Lynlw]

Thanks for your post. I am happy to hear that the sound isn't so annoying as I have heard from others. That makes me feel a little better if the doc wants to go in that direction. That sound and the Coumadin was becoming the deal breaker for me. I appreciate your post. I was told at age 58, it could go either way. I am leaning towards tissue. I will stay in touch. Thanks again.

Valves I personally heard sound like a watch ticking to me, and I've heard other say the say thing.

 

[Bina]

I know someone with a 20 year old St. Jude Master series valve and it ticks like a watch.
My Regent is a thud, thud for the most part.

 

[Jeri]

I know someone with a 20 year old St. Jude Master series valve and it ticks like a watch.
My Regent is a thud, thud for the most part.

What does that "thud" sound like. Is it annoying to you??? How are you doing with the Coumadin. These last few posts have been eye-openers for me AGAIN!! I just don't know what direction to go in. Dan also raised some very valid points about 70-75 having it replaced again with the financial issues also.....alot to consider before making this decision.

 

[normofthenorth]

I think 58's right in the "grey zone" because of the (best) stats on overall life expectancy. The lines cross right around you, AFAIK. Patients much younger tend to have better overall mortality stats with mech, and patients much older with tissue. If you share Dan's values, that a "re-do" is to be avoided "at all costs", then it's not so grey. And if you agree with some that the possibility of clicking or of being locked in a "marriage from Hell" with Coumadin (if you turn out to be incompatible with it) are to be avoided "at all costs", then it's not so grey in the opposite direction.

And I think there's also the need to make peace with your decision even if things turn out differently than our "best guess". (I was raised with a somber story about a man in Europe in the 1930's who believed that World War II was coming, and couldn't imagine leaving his family near the battlefield. So he moved them all to a sleepy island called Guadalcanal! Probably a pure myth, but there's a moral there somewhere: If you bend your choices just in order to avoid one undesirable outcome (say a re-do, or ACT), be warned that there's no guarantee that you'll actually end up avoiding it! If that's still OK, then go for it.

 

[ALCapshaw2]

I know someone with a 20 year old St. Jude Master series valve and it ticks like a watch.
My Regent is a thud, thud for the most part.

Most of the time I don't even hear (or feel) MY St. Jude Master's Series Aortic Valve.
There are things that I can do (deep breath and hold) and positions that I can assume to enhance the sound
IF /when I want to hear my valve (which I find to be a rather pleasant soft sound).

I suspect that body acoustics play at least an equal part in what a patient may hear from a mechanical valve.
I can see where that might not be comforting to someone trying to decide which valve to get...

 

[ALCapshaw2]

What does that "thud" sound like. Is it annoying to you??? How are you doing with the Coumadin. These last few posts have been eye-openers for me AGAIN!! I just don't know what direction to go in. Dan also raised some very valid points about 70-75 having it replaced again with the financial issues also.....alot to consider before making this decision.

Jeri -

If you would like to learm more about what it is like to live with/on Coumadin, look over the Anti-Coagulation Forum, beginning with the "Stickys" at the top of the Thread Listing.

Most members who want to make their own informed decision typically end up choosing a valve whose negative aspects they believe they can best live with, knowing that EVERY Valve has both positive and negative aspects and that there is no such thing as a Perfect Replacement Valve.

It takes a lot of learning and still requires a Leap of Faith in the end.

Many members report coming to a Sense of Peace once they feel comfortable with their choice and fate.

Hopefully you too will find that sense of peace when you make your decision.

'AL'

 

[bdryer]

Jeri

We are almost in the same boat. I'm 55. I get my surgery end of Jan 2011 for replacement of the AV. I will also have an ascending aorta graft. The surgeon recommends a MHV. Prior to his recommendation I pre decided that I was going with a MHV. I'm taking my best chance at avoiding a repeat surgery. a MHV at our age is the only option based on the reliability of a tissue valve. Hanging here and meeting/speaking with folks on warfarin gave me confidence in the ease of it's management.

I do not anticipate quitting my active athletic life style. I will eat Vit K foods every day and enjoy my beers.

 

[bdryer]

Comments from my entry were chopped off after editing my post. I had previously commented when you initially joined, but I wanted to bring some new technology to your attention. Prior to getting to the point I was reinforcing the fact that I who is close to your age at 55, athletically active and travel chose to go mechanical.

Now to get to the point. As you have chosen to go tissue, check out the ValveXchange web site. A local surgeon said this is the future. The valve is actually two parts, the permanent support frame and leaflets. Once installed and if the leaflets fail, the leaflets alone are replaced via Cath. The permanent support frame stays in situ. You get to go to the grave with it. Unfortunately for us approval is to far out and we must go with present technology.

 

[jumpy]

Hey Bruce,

Thanks for the link regarding ValveXchange. Did the surgeon give any timelines for approval. It seems like the "holy grail" of valve surgery.

 

[Lynlw]

What does that "thud" sound like. Is it annoying to you??? How are you doing with the Coumadin. These last few posts have been eye-openers for me AGAIN!! I just don't know what direction to go in. Dan also raised some very valid points about 70-75 having it replaced again with the financial issues also.....alot to consider before making this decision.

Honestly IMO you (not you specifically, just anyone in general) could probably drive yourself nuts if you keep going back and forth, trying to figure out what the best valve type for you (or anyone) is since both types have their plus and minuses, it comes down to which YOU rather live with, since you won't know how you will do with surgery or ticking or coumadin until after you have the surgery.
Chances are someone who is 58 will have a tissue valve they get now last longer than 12-15 years. In the Perimount studies 50% of people in their 40s still had their valve doing well at 15 years and over 80% of people in their 60s had it doing great at 18 years (the last data reported) and my guess is the odds are VERY good, when that valve needs replaced, it will most likely be done in the cath lab.. Percutaneous valve replacements (not the valve exchange mentioned elsewhere) are doing great in the US trials and most likely will be approved in a couple years. So I would plan on maybe needing surgery IF you out live your valve and be at peace with that possibility, but hope for things to conitinue to go as well as they are looking for valves that can be replaced in the cath lab.
Many people I've talked to don't consider JUST what are the chances you will or won't outlive a tissue valve, but take into the fact what the risks are of having at least 1 REDO (who's risks are about the same as 1st time) against the risk of living that many years on Coumadin and having a major "event' bleed or clot
Coumadin management IS much better with Home INR and much improved since they started going by INR in the early 90s, but that has been almost 20 years (I would guess most doctors weren't even practicing long before INR was started) and coumadin STILL is on the list of top drugs for ER problems, death ect. Coumadin has risks of bleeds or clots..even IF your INR is in perfect range, the morbidity /mortality still is higher than someone not on coumadin, for traumas, falls (even just from standing), brain bleeds. ect. You can do searches on www.pubmed.com for the studies.
Chances are whatever valve you chose you will live a long happy life, as others have said, go with your gut feeling and take a leap of faith

 

[ALCapshaw2]

I find it interesting that so many want to put their hopes and lives in the percutaneous Tissue Valve Replacement technololgy which is in it's infancy and has NOT been trail tested in the General Population and has NO long-term track record or performance data in younger / more athletic individuals ...

and yet 'they' all whine that the Latest and Greatest in Mechanical Valve Technology offered by On-X since 1996 and developed by Jack Bokros, Ph.D., after 20 years (now 30) 'in the valve design business' doesn't have enough of a long term history compared with the original (so-called Gold Standard) bi-leaflet mechanical valve design from 30 years ago (which used pyrolytic valve leaflets developed by Jack Bokros' group) that is still being offered by St. Jude in the Master's Series.

I find that Ironic (actually something else but I'll stick with Ironic as a less inflamatory descriptor)

 

[Lynlw]

I find it interesting that so many want to put their hopes and lives in the percutaneous Tissue Valve Replacement technololgy which is in it's infancy and has NOT been trail tested in the General Population and has NO long-term track record or performance data in younger / more athletic individuals ...

and yet 'they' all whine that the Latest and Greatest in Mechanical Valve Technology offered by On-X since 1996 and developed by Jack Bokros, Ph.D., after 20 years (now 30) 'in the valve design business' doesn't have enough of a long term history compared with the original (so-called Gold Standard) bi-leaflet mechanical valve design from 30 years ago (which used pyrolytic valve leaflets developed by Jack Bokros' group) that is still being offered by St. Jude in the Master's Series.

I find that Ironic (actually something else but I'll stick with Ironic as a less inflamatory descriptor)

Interesting I don't know anyone whining about ON-X, unless you consider pointing out the fact, that ON-x has not been implanted in many people 10-15 years or that several studies show there is not alot of difference between ON-X and other valves as far as patients results, whining. I think it is good things to know so you can make choice based on all the info available.

 

[Bina]

Hey kids, this valve discussion could go on and on and on and on....there is no "right" or "better" choice; and just
when we think that the latest and greatest is here, then another new feature will be around the corner.
Just take a look at what kind of computers, phones, etc. we were using 10-15 years ago.

It's all about what an individual person is comfortable with and perhaps also what is available to them.
Remember that VR.org has a few members leading full and productive lives with recalled valves inside of them;
there are always exceptions to the norm.

 

[bdryer]

Hey Jumpy

Good to hear from you. No time frame on the ValveXchange approval. You must take into Consideration that Canada seems to lag the world in approving medical advancements. Heck, On-X just landed on the hospital last week. I would not anticipate approval any time soon. If I were you, do like me and Al Capshaw, call the tech rep and find out. They will send you a ton of research papers in support of their product.

As for me, my fate next month is carbon technology. Future technology is out their as a standby only should my manly mechanical AV fail.

Hey has anyone considered giving their transplanted AV a nick name? We should start a contest. LOL!!!

See Ya

 

[Lynlw]

Hey Bruce,

Thanks for the link regarding ValveXchange. Did the surgeon give any timelines for approval. It seems like the "holy grail" of valve surgery.

I'm pretty sure they are still just doing their valves w/ sheep.