Still not sure!

[briansmom]

Shei,
I have been having the same struggle with valve choice. My son is the patient. As a result of my readings here I chose the on-x. I was quite comfortable for a while, then I went back to thinking about a tissue valve because of his life style. My son is not a candidate for a Ross procedure and is really not a candidate for tissue either - so my choice should be easy!? I'm back to the on-x and his surgery is scheduled for 3/12. I am trying to be at peace with it. BTW, they are sewing the aorta onto the on-x valve. They said it added about 5 minutes to the surgery. Best of luck - to all of us - with this dificult decision.

 

[Karlynn]

Deanne - Just noticed that Brian's surgery wasn't on the calendar, so I added it. Hope you don't mind.

 

[lance]

ACT misinformation

ACT misinformation

Lance,
You don't seem to have any problem monitoring your INR and keeping it in range. Yet you're obviously really down on ACT, but you don't specifically say why.
Why? And what were you misinformed about?

Surgeon recommended mechanical and at the same time told me only that warfarin was a little pill you take every day and have your blood tested every so often--that was all. So I went on my happy way thinking it was just another aspirin or digoxin--you get the idea. Now compare that to the reality of living with ACT for life no time off for good behaviour.

 

[Ross]

Lance,
You don't seem to have any problem monitoring your INR and keeping it in range. Yet you're obviously really down on ACT, but you don't specifically say why.
Why? And what were you misinformed about?

I'm really wondering this myself. From his point of view, it should be avoided like the plague and I certainly don't understand why.

When it comes to other procedures, you sometimes have to go onto bridge therapy with heparin IV's. This can be a pain, but how often is this going to happen? Not very many. If you use common sense and protect your noggin, there really isn't much that can not still do. I still cut myself silly on car repairs, etc. I bleed a little longer but that's it. Stop the bleeding the same way you stop it any other time. Direct pressure. The biggest overall turnoff to ACT is the fact that so many "Professionals" have no clue how to manage a Coumadin patient and are most often the cause for a patients recorded tragedy. If your not stable in 1 month or less, something is wrong and it's most likely your manager.

 

[Karlynn]

BTW the total bill was about $125K for Doctors and Hospital.

15 years ago, my VR cost $35,000. The bill listed the actual cost of my St. Jude valve as $5000. Anyone know what they "sell" for now? Or any valve, for that matter.

 

[Karlynn]

If you use common sense and protect your noggin, there really isn't much that can not still do. I still cut myself silly on car repairs, etc. I bleed a little longer but that's it. Stop the bleeding the same way you stop it any other time. Direct pressure. The biggest overall turnoff to ACT is the fact that so many "Professionals" have no clue how to manage a Coumadin patient and are most often the cause for a patients recorded tragedy. If your not stable in 1 month or less, something is wrong and it's most likely your manager.

I had a really great New Year's Eve. (And a really horrible New Year's Day, because the Eve was so fun. I hadn't done that since college!!!!) Anyway, my INR was a "touch" high - high enough that I'm embarassed to give the number. (Dehydration was the cause. ) I took my 120 lb dog out for a walk and he tripped me. I went flying. I was literally airborn. Landed on both knees and one hand. I thought for sure I was going to have enormous swollen bruises - given my bad-girl INR. I didn't bruise any more than I normally do, which isn't a lot. However, some people do tend to bruise more than others.

I'm back to being a wise consumer of adult beverages after my one night of idiocy. But I do enjoy my glass or two of wine or a diet and rum. My INR was back to what it should be within 2 days and life continues on.

 

[PJmomrunner]

Surgeon recommended mechanical and at the same time told me only that warfarin was a little pill you take every day and have your blood tested every so often--that was all. So I went on my happy way thinking it was just another aspirin or digoxin--you get the idea. Now compare that to the reality of living with ACT for life no time off for good behaviour.

So, Lance, are you saying: you had no idea you would inspire concern/panic/whatever amongst the ill-informed dentists/gastroenterologists/ER docs, etc. in your future? you didn't know that skipping a dose or two could cause problems or not knowing if you skipped a does could cause angst? Stuff like that? Inquiring minds want to know!

 

[Lynlw]

15 years ago, my VR cost $35,000. The bill listed the actual cost of my St. Jude valve as $5000. Anyone know what they "sell" for now? Or any valve, for that matter.

don't have THAT info right no, but I almost passed out when w got the bill for Justin's MRI, just the MRI not doc ect, was 11,905 , luckily We have good insurance , BUT they screwed up when submitting so sent Justin the bill since he is 18 lol, it was a HUGE lesson to him what's I've been telling him for years, with his heart, he needs a good eductaion and good insurance, He said wow, I can see it now, my friends getting student loans and me looking for the same amount for an MRI

 

[KAJ]

15 years ago, my VR cost $35,000. The bill listed the actual cost of my St. Jude valve as $5000. Anyone know what they "sell" for now? Or any valve, for that matter.

Karlynn,

I was curious about the cost of my valve so I callled the company. I was told the price of my valve was $6,000.00 but they would not tell me how much the hospital paid for it. I never saw a breakdown of the bill from the hospital or a bill from the surgeon. The bill from the hospital came to slightly over $106,000.00. but that may have included the surgeon.

Karl

 

[Ross]

don't have THAT info right no, but I almost passed out when w got the bill for Justin's MRI, just the MRI not doc ect, was 11,905 , luckily We have good insurance , BUT they screwed up when submitting so sent Justin the bill since he is 18 lol, it was a HUGE lesson to him what's I've been telling him for years, with his heart, he needs a good eductaion and good insurance, He said wow, I can see it now, my friends getting student loans and me looking for the same amount for an MRI

Yeah that's what you would have to pay, but the insurance company would only pay a 1/3 or so of that amount. It's a freakin crime.

 

[Susan BAV]

I never expected to stir things up like this, but with that said, I also want to add that all the differing viewpoints have been very insightful and appreciated! This is a very personal decision, but your comments will no doubt help Nick make his final one...What is clear is that regardless of the choice of valve, the outcome is unknown, but what I keep wondering is "which valve carries more unknowns?" Which one would be more of a gamble? Long-term ACT with a mechanical or repeat surgeries with tissue. The comments favoring both "sides" are very valid, so weighing the pros & cons is so stressful! If the risks were really equal, then the choice would be to do it just once (hopefully just once) with mechanical, but there's no way to really weigh the risks, is there?The 26th seems like an eternity away, yet too soon at the same time!

Well, best wishes with the decision, and then with making peace with it, and then the actual surgery. Seems like some folks forgot what your thread was for, with all the other conversations rolling along within that had little or nothing to do with your original post, but I'm glad you found some beneficial information and support. But please keep posting and asking questions. Not all the forums get like this one did.

 

[lance]

Nope no idea whatsoever

Nope no idea whatsoever

So, Lance, are you saying: you had no idea you would inspire concern/panic/whatever amongst the ill-informed dentists/gastroenterologists/ER docs, etc. in your future? you didn't know that skipping a dose or two could cause problems or not knowing if you skipped a does could cause angst? Stuff like that? Inquiring minds want to know!

Remember it's a little pill and it's easy enough to swallow. HeHeHe

That's right, no idea whatsoever. So I've had quite an awakening.

Last week-end I attended the Annual General Meeting of a club I belong to. Weather forecasted late afternoon snow with high winds. I was so excited that I forgot to carry warfarin with me. So the choice was stay at the hotel overnight, enjoy dinner and the companionship, leave in mid-afternoon when I noticed the snow began, have dinner and drive through whiteouts and hope for the best or stay the night and miss one full dose of warfarin. In a way it's funny I know but just one of the little inconvniences associated with ACT. It doesn't take rocket science to decide which was the smartest decision. Inconvenience is one thing life-threatening bad warfarin advice quite another.

 

[Karlynn]

Remember it's a little pill and it's easy enough to swallow. HeHeHe

That's right, no idea whatsoever. So I've had quite an awakening.

Last week-end I attended the Annual General Meeting of a club I belong to. Weather forecasted late afternoon snow with high winds. I was so excited that I forgot to carry warfarin with me. So the choice was stay at the hotel overnight, enjoy dinner and the companionship, leave in mid-afternoon when I noticed the snow began, have dinner and drive through whiteouts and hope for the best or stay the night and miss one full dose of warfarin. In a way it's funny I know but just one of the little inconvniences associated with ACT. It doesn't take rocket science to decide which was the smartest decision. Inconvenience is one thing life-threatening bad warfarin advice quite another.

Ah, I learned the lesson early on in much the same way you did. Always carry extra medication with you. (Yes Mom!) They make this little metal, bullet-shaped pill caddies that go right on a key ring. Or stash some in your glove compartment in your car. The reality of it is, one missed dose of warfarin carries very little risk. Some of us break up the missed dose over a few days and some just say "oh well".

Lack of information and erroneous information are the biggest problems with ACT. We spend so much time here dispelling bad information and giving correct information. At times, it feels like Al Lodwick is the only person in the medical profession that "gets it". I know that's far from the truth, but we see so much here, it jades us.

And once again, back to our regularly scheduled topic. How are you doing Shei - you still breathing deeply?

 

[Arlyss]

Young, BAV with Regurg, Aortic Aneurysm 4.1

Young, BAV with Regurg, Aortic Aneurysm 4.1

Shei,
Nick fits a particular sub category of those born with a bicuspid aortic valve. They are younger (20's and 30's), their valve leaks because the tissue is weak, and their aortic tissue is also weak and results in an aneurysm.

One thing to know is that regardless of the valve choice, he has an aortic aneurysm now which will continue to grow. Getting a mechanical valve will only address the valve, it will not do anything about his aorta.

If another surgery is to be avoided, or worse yet an aortic emergency due to dissection or rupture, your husband should be evaluated now (and also have life long follow up) by someone who understands bicuspid aortic valve disease.

Hindsight is 20-20, but my husband has had two additional surgeries, even though he first was given a mechanical intended to last a life time.....

Just please be sure to be on top of the status of his aorta, no matter what valve is chosen.

Best wishes,
Arlyss