mech vs. bio statistics

[geebee]

While I truly understand the use of statistics, they are often useless unless you are the norm. Many of us are not. I was given a 5-7% chance of not making it through my second sugery. However, I almost died because the pulmonary artery was cut while the surgeon was making his way through massive amounts of scar tissue. How one "creates" scar tissue is usually not known until one is opened up again and there is obviously no option but to continue the surgery even if there is dangerous amounts of scar tissue. So, even if someone is in good shape and their heart is deemed OK for surgery, so many other things can go wrong, often not predictable.

I truly understand the desire to live life without coumadin. If I needed a fourth surgery and was old enough, I would probably go tissue (if I got rid of my a-fib). I do not LIKE being on coumadin but I don't find it a big hassle either. I would love to be able to think about colonoscopies, teeth work, etc. without worrying about excessive bleeding. However, this is my life.

And there are no guarantees one will not need resurgery with a mechanical. I am a prime example of that fact. However, with each surgery, my main thought was doing all I could to prevent more surgeries. I think I may have succeeded this time.

 

[PapaHappyStar]

While I truly understand the use of statistics, they are often useless unless you are the norm. Many of us are not. I was given a 5-7% chance of not making it through my second sugery. However, I almost died because the pulmonary artery was cut while the surgeon was making his way through massive amounts of scar tissue. How one "creates" scar tissue is usually not known until one is opened up again and there is obviously no option but to continue the surgery even if there is dangerous amounts of scar tissue. So, even if someone is in good shape and their heart is deemed OK for surgery, so many other things can go wrong, often not predictable.

It is comforting for me to believe that my choice was based solidly on statistics; it was I tell you...

The good thing about this group is for those who need hugs there are always ample hugs and for those who need statistics...

 

[Mary]

And here's another angle on repeat surgeries and scar tissue.

I found out after my bovine replacement that my pericardium had basically scarred over and is causing a condition named pericardial constriction. Talk about a complication; I've got one!
The only real "cure" is to have the entire pericardium removed. That surgery is considered to be more risky than the original replacement.

However, since I have a tissue valve, the plan is to wait until I have to have the valve replaced, and then remove the pericardium at the same time.
If I had a mechanical valve, I might have a valve that would last 30-40 years, but still need the surgery to remove the pericardium. And I would be dealing with anticoagulation issues.

I'm not happy with what's happened, but all things considered, I'm glad I've got a tissue.

 

[Wise]

It is comforting for me to believe that my choice was based solidly on statistics; it was I tell you...

The good thing about this group is for those who need hugs there are always ample hugs and for those who need statistics...

Even in differences we find our similarities. I'm one of those people who needs the hugs and the statistics.

 

[geebee]

It is comforting for me to believe that my choice was based solidly on statistics; it was I tell you...

The good thing about this group is for those who need hugs there are always ample hugs and for those who need statistics...

You are so right. I am pretty much solely a hug person. I have found (for me) statistics have meant very little. But, as I said, they only work for the norm and, as many of you know, I am not normal.

 

[Randy & Robyn]

But, as I said, they only work for the norm and, as many of you know, I am not normal.

Join the club. My surgeon's first words after I woke up postsurgery were that the repair looked great and should last until I was old and gray. And I blew that sucker out in two weeks!!! Granted, many aortic valve repairs don't last more than ten years or so but two weeks?!? Just makes me wonder what the all-powerful one has in store for me next.

 

[PapaHappyStar]

Join the club. My surgeon's first words after I woke up postsurgery were that the repair looked great and should last until I was old and gray. And I blew that sucker out in two weeks!!! Granted, many aortic valve repairs don't last more than ten years or so but two weeks?!? Just makes me wonder what the all-powerful one has in store for me next.

Do they/have they seen you at Mayo to see if they can figure out why the repair failed. There are relatively few of these done and the technique is an evolving process so they might be able to learn something from it....

 

[Randy & Robyn]

Do they/have they seen you at Mayo to see if they can figure out why the repair failed. There are relatively few of these done and the technique is an evolving process so they might be able to learn something from it....

As it stands right now, I am more than likely going back to Mayo for my next surgery, just not with the same surgeon. I will certainly give them permission to do whatever studies they want with the valve once they yank it out. I would be very interested in hearing their theories for the cause of this extremely premature failure as well.

 

[PapaHappyStar]

You are so right. I am pretty much solely a hug person. I have found (for me) statistics have meant very little.

Sometimes people join in for one and stay for the other....

But, as I said, they only work for the norm and, as many of you know, I am not normal.

I guesss you just need to find the right group to be just normal with, maybe several groups where each "abnormal" part of you can feel "normal".
See I sound like a groupie around here -- been inordinately fond of solitude ( and soliloquy ) for too long.

 

[PapaHappyStar]

As it stands right now, I am more than likely going back to Mayo for my next surgery, just not with the same surgeon. I will certainly give them permission to do whatever studies they want with the valve once they yank it out. I would be very interested in hearing their theories for the cause of this extremely premature failure as well.

Sounds like you must have considered this:
The reason your repair failed might have some bearing on the choice of valve or procedure you may need next. ( Especially if the repair was not botched up by the surgeon )

 

[Karlynn]

It seems like I tend to be one of the ones that ends up being the Cautionary Tale part of the statistics.

When my MVP was diagnosed, I was told -live life and forget about it. 10% of the population has MVP and most live their lives normally without even knowing it.

Then I got pregnant with my 2nd child and began having rhythm problems. I was told that most woman will see these rhythm problems go away after delivery.

(so far the count is 0 and 2)

Then I was told that they would most likely be able to control my MVP symptoms with meds and that IF I needed to have my valve replaced, it would be when I was a senior citizen.

(so now the count is 0 and 3 )

If I started including all the statements I've been told that involve comments like "Relax, this med works for most people " (but not me) "Most people don't feel anything at all." (but I did), "this drug will knock you out and you won't know a thing" (it didn't and it took a much stronger drug) you can understand why I have a hard time being reassured by statistics- it seems too often my hash mark on the statistical graph is on the bad side.

However statistics are a valuable tool in making decisions. My experience has been that, while they can be reassuring, the "small percentage" group sometimes includes me.

So that's why hugs are good too.

 

[tobagotwo]

I like both hugs and statistics. I want to have a fair idea of what is most likely to happen with given choices. Statistics and studies can help with that. It isn't a matter of control: anyone who believes they fully "control" their heart valve destiny is sadly misled. It's just a matter of giving yourself the best chance you know how.

But you still need people to help you get through it. That's where the hugs come in. Or when the statistics aren't clear, and you need to make your choice with a gut feeling and move forward with human faith. No magic numbers can provide the strength found in that combination.

Best wishes,

 

[Natanni]

Randy...

Randy...

Hey Randy

If you guys are heading back to Rochester soon, Nathan and I will be down there for Nathan's post ops Dec....

Nathan has Dr Freeman, a cardiologist that specializes in cardiomyopathy (due to Nathan's Dad, a heart transplant recipiant d/t cardiomyopathy) but he has two days worth of echos, xrays and labs

Dr Orszulak did Nathan's surgery and Nathan liked him. I think he found me a smidge irritating He pinned me for a surgical assistant within 5 minutes of our first visit and we just kept going from there! Dr Babo was his resident and gave me alot of details of Nathan's surgery which I apprecited. PM Nate of myself if you want any details or if you want to know when we will be Rochester.

 

[Ross]

You folks gettin all mushy and stuff in here? You all know where I stand on statistics, so I won't go there. Hugs are good, especially from the woman specie.

 

[geebee]

You folks gettin all mushy and stuff in here? You all know where I stand on statistics, so I won't go there. Hugs are good, especially from the woman specie.

And you are the best hugger we know.

 

[TomS]

One more "what if" scenario. What if they come up with a replacement for Coumadin in the next 10 years that makes it totally safe?

 

[Karlynn]

One more "what if" scenario. What if they come up with a replacement for Coumadin in the next 10 years that makes it totally safe?

This is what I wonder when I see posts on future advancements in less invasive tissue replacements. Someday, there will most likely be a "no bother" replacement for Coumadin, but I doubt it will be in the next 10 years. I'm thinking it will more likely be a combo advancement of a new type of mech valve that doesn't require the level anticoagulant that ones do now. The On-X valve is what lead me to this type of advancement rather than just a safe replacement for warfarin.

 

[Karen7]

When I told my pharmacist I might be going on coumadin, he gave me a look like it was a sentence.

Hi Randy,

My mother works in a pharmacy and she also flipped when I mentioned coumadin for the first time. Pharmacies never, ever hear from well-managed anticoagulators. Why would they? But they see disasters (both bleeding & clotting) from street people and habitual users and frankly, older, somewhat "hazy" patients who don't understand the principals of INR or the consistancy and faithfulness needed to make it work (and I blame their doctors for this.) My mother actually thought I could never eat spinach again, that I would constantly having to be looking and seeing what vitamin K foods were hidden in recipes so I could avoid them and that if I cut my leg shaving, I would have to go to the hospital. She's not an uneducated or uninformed person either, but working at a pharmacy really skewed her perspective. I would pay absolutely no attention to a pharmacist's horror of coumadin. I'm sure he's seen horrible things but they are the working with the very "fringe" of life.

 

[Randy & Robyn]

Hi Randy,

My mother works in a pharmacy and she also flipped when I mentioned coumadin for the first time. Pharmacies never, ever hear from well-managed anticoagulators. Why would they? But they see disasters (both bleeding & clotting) from street people and habitual users and frankly, older, somewhat "hazy" patients who don't understand the principals of INR or the consistancy and faithfulness needed to make it work (and I blame their doctors for this.) My mother actually thought I could never eat spinach again, that I would constantly having to be looking and seeing what vitamin K foods were hidden in recipes so I could avoid them and that if I cut my leg shaving, I would have to go to the hospital. She's not an uneducated or uninformed person either, but working at a pharmacy really skewed her perspective. I would pay absolutely no attention to a pharmacist's horror of coumadin. I'm sure he's seen horrible things but they are the working with the very "fringe" of life.

I agree completely, Karen. I still don't understand why pharmacies don't carry inr testing devices yet. With as many people as there are on coumadin and the very real benefits to be had by self-testing, it seems odd. I'm sure prices would drop dramatically as well.

As for the unfounded rumor of not being able to eat spinach, I think I'll just pretend that one is true.

 

[Ross]

Well Randy I'm going to go eat a can of spinach in your honor and I'll even be sure to nick my face with my razor a couple times too!