18yr old valve replacement ordered STAT

[Karlynn]

QV - there's no doubt that your son is at a tough age to try and leverage all the factors.

I did want to reemphasize Ross' information that the risk of clot and stroke do not increase with each year. Not necessarily for just you, but for anyone reading for information. It is the same percentage every 365 days. The information that it increases is an oft heard misconception that really skews the way the risk of Coumadin appears. At 15 years on my valve, I have the same risk factor as someone who got one installed a year ago. ****, who's had the same mech valve for 40 years, has the same risk as me, and the person who's had theirs for a year. My guess is that as the stats reflect more of the newer valve technology the actual percentage will continue to decrease.

I do sympathize with your need to be concerned over whether your son has the maturity to responsibly take his Coumadin. (Having 2 children who were 18 not all that long ago. ) If he's taken vitamins or other meds as a daily habit for any length of time, it shouldn't be much of an issue. If he hasn't, it would definitely be an addition that he would need to be intentionally dilligent about. If you feel that college life offers too much of a temptation for lots of drinking and that he'll have too hard a time saying "no", then you probably are safer with a reoperation (unless there's issues there that you don't know yet), whether it's 4 years or 10 years down the road. My daughter just graduated and my son did last year and I think my fear would have been the drinking issue and not really any physical activity concerns.

 

[briansmom]

QV,
I think you are on the right path for your family. Do you guys have a surgery date? Did I miss that in all these posts?

 

[ALCapshaw2]

QueenVictoria wrote:

"The risk of him playing sports/car accident/ getting hurt- bleeding profusely, a 1.5% for clotting and stroke risk increases every year that he is on coumadin."

Unfortunately, some (many?) Doctors seem to still believe that the Risk of Stroke or Bleeding with Coumadin is Cumulative. Mathematically this is IMPOSSIBLE because if that were true, at some age, EVERYONE would EXCEED a 100% chance of Stroke or Risk EVERY YEAR. We KNOW that is simply NOT the case. One of our members (who teaches statistics at Notre Dame) developed a table of Risk percentages assuming constant level of risk per year. I don't remember what thread it was under.

'AL Capshaw'

 

[OldManEmu]

Stats

Stats

QueenVictoria
Here is a link to a previous discusion about risk calculation.

http://www.valvereplacement.com/forums/showthread.php?t=16604


ALCapshaw
The post you were refering to

One of our members (who teaches statistics at Notre Dame) developed a table of Risk percentages assuming constant level of risk per year.

was by Bradley White, from memory, who has already posted on this thread.
You may want to do a search by his posts, and post the link.

 

[Karlynn]

I just want to caution people to be careful when reading some our more mathematically-minded members posts on statistics. It gets very confusing and there have been some pretty creative use of numbers that make it look like it is a cummulative risk. Al Capshaw's post cuts to the basics. If it were cummulative, the tissue valve clot statistics would also be cummulative and create an increased risk for those valves as well. The same statistics apply to buying lottery tickets. My husband has purchased one ticket every week for many years - I wish our chances increased with each week.

Unfortunately, some (many?) Doctors seem to still believe that the Risk of Stroke or Bleeding with Coumadin is Cumulative. Mathematically this is IMPOSSIBLE because if that were true, at some age, EVERYONE would EXCEED a 100% chance of Stroke or Risk EVERY YEAR. We KNOW that is simply NOT the case.

As far as the bleeding issue goes, we've come to understand that the medical community seems to obsess on the bleedin issue. We see stories here all the time about medical professions who've put people's lives at risk for a stroke, simply to avoid the inconvenience of some bleeding. Most bleeding can be controlled. Most home accidents that cause bleeding require no intervention. If anyone is concerned about the likely-hood of bleeding to death while on Coumadin, please contact/PM Allodwick. His experience with his Coumadin clinic is invaluable.

Here is a quote of Al's from an old thread that puts the bleeding issue into perspective. The discussion was on dentists who want patients to stop Coumadin for simple procedures, putting them at risk for stroke because they are afraid of a little bleeding.

Normal childbirth results in a loss of about a quart and a half of blood and the woman walks out the next day carrying her baby. But death will result if you have your teeth cleaned while on warfarin!!!!!

QV - I want to emphasize that this information isn't aimed at you. It sounds like you've become more comfortable with your doctor's recommendation than when you started this thread and that's good. I continue to post this information for those who are also reading it for information. They may be coming on with a lot of Coumadin myth.

 

[Karlynn]

Most home accidents that cause bleeding require no intervention.

Quoting myself - is that the same as repeating myself.

I should have also clarified that home accidents that do require intervention for bleeding would also require intervention for those not on Coumadin as well. Cutting one's finger with the electric hedge trimmer (something that seems to be a favored past-time for my hubby ) would require a trip to the ER for anyone.

 

[Lynlw]

There is a balanced risk between choosing the bio vs the artificial valve. You are depending upon an 18 yr old to monitor his blood levels and adjust the medications accordingly. Even with use of Coumadin there is an increased chance of clotting and therefore stroke with the mechanical valve. The downside risk of the the bio valve is the longevity of that type of valve. The use of the bio valve does not preclude later replacement w/ a mechanical valve, dependent upon its life span. There are additional risks being on coumadin. If you need surgery you must come off the coumadin increasing the risk of stroke. The Marfan's issue is still unresolved. Genetic counseling is tomo- and those results may alter the surgeons reccomendations. That is still not resolved at this point.
The risk of him playing sports/car accident/ getting hurt- bleeding profusely, a 1.5% for clotting and stroke risk increases every year that he is on coumadin.The only correct choice is hindsight. Each valve has it's advantages
and disadvantages. Yes he will need surgery in the future- hopefully when he is older he will be more mature to moniter the drugs needed with a mechanical valve. In the future there may be a bio valve that has a longer lifespan- or some option that is unavailable today.I do trust Dr. Colvin and both he and his cardiologist thought this was the best decision for Scott at this time.We will find out this week how the Marfan's comes into play IF he indeed has Marfans.

I'm glad both your doctors agree with the choice. and it seems like you are at peace with the decisions. I always know when when we are doing the "right' thng I feel a sense of peace. When Justin was hving his last surgery we talked to 5 centers. I was torn between 2 surgeons, I put alot of stock into where Justin believed he should have it since, he had to do all the fighting and healing. but I never really felt at peace, His surgery was postponed 3 times then we decided to go elsewhere w/ a different surgen and as soon as we did i just knew it was right.
I imagine today w/ be really tough w/ all the genetics testing and the possibility of learning new things that may be pretty scarey. But I think Scott and you are a really good team and have gotten thru alot together, so I know you will get thru this even stronger too. You are both (and the rest of your family of course too) in my prayers. IF you have any questions after today about anything you guys learn from the genetics people, I'm sure someone here knows about it, and can help you, That's a good thing about having such a large diverse group, most everyone has experienced something that someone will ask about. (altho this is one thing Justin hasn't done, we had alot of testing done a couple years ago since many in his family have CHD, but they couldn't find a link w/ the DNAs) lyn

 

[Bryan B]

Well I had typed out a thoughtful response to this thread and got timed out and the post was history.

I guess I'll give the cliff notes to my earlier post.

Ross and Karlynn...step away from the computer. You are telling the mother of a son that is very worried about him that Dr. Colvin may very well be making the wrong decision on his choice of valve (whether you realize it or not). Just to clarify...what are your credentials that would make you feel like you know more than one of the leading cardiothoracic surgeons in the nation? Do you know this child's medical history? Have you reviewed his echo and other tests? Are you experts in Marfan's syndrome and connective tissue disorders? It's really sad that a new member comes to this forum for advice and reassurance, and what she ends up with is ANOTHER debate about mechanical vs. tissue valves. Everyone here needs to show some restraint about their personal biases and give QV good advice. I believe someone actually did give good advice that QV needs to simply ask Dr. Colvin to elaborate on his decision to use a tissue valve, but that post may have gotten lost between the back and forth pissing contest about mechanical vs. tissue valve (that's right...I said pissing contest).

QV...if you talk to Dr. Colvin and still feel unsure about his decision (which I doubt will happen), I would recommend talking to my surgeon which is listed in my signature. One of his specialties is surgery on patients with Marfan's syndrome. Here is the link to his bio: http://www.dukehealth.org/physicians/2A437D6CE9E8C1EC85256DFD006A92B6

Ya'll need to get a grip. Yes you know a lot more about heart valve disease than most people, but I don't remember any members posting on this thread that are heart surgeons (correct me if I'm wrong). I'm not a big fan of members here dolling out advice like they are experts in the field (with the exception of Bob who does his research before commenting). It's fine to give new members information you have learned over the years, but to 2nd guess one of the best surgeons in the country can't be very reassuring to QV.

 

[Mary]

Well I had typed out a thoughtful response to this thread and got timed out and the post was history.

I guess I'll give the cliff notes to my earlier post.

Ross and Karlynn...step away from the computer. You are telling the mother of a son that is very worried about him that Dr. Colvin may very well be making the wrong decision on his choice of valve (whether you realize it or not). Just to clarify...what are your credentials that would make you feel like you know more than one of the leading cardiothoracic surgeons in the nation? Do you know this child's medical history? Have you reviewed his echo and other tests? Are you experts in Marfan's syndrome and connective tissue disorders? It's really sad that a new member comes to this forum for advice and reassurance, and what she ends up with is ANOTHER debate about mechanical vs. tissue valves. Everyone here needs to show some restraint about their personal biases and give QV good advice. I believe someone actually did give good advice that QV needs to simply ask Dr. Colvin to elaborate on his decision to use a tissue valve, but that post may have gotten lost between the back and forth pissing contest about mechanical vs. tissue valve (that's right...I said pissing contest).

QV...if you talk to Dr. Colvin and still feel unsure about his decision (which I doubt will happen), I would recommend talking to my surgeon which is listed in my signature. One of his specialties is surgery on patients with Marfan's syndrome. Here is the link to his bio: http://www.dukehealth.org/physicians/2A437D6CE9E8C1EC85256DFD006A92B6

Ya'll need to get a grip. Yes you know a lot more about heart valve disease than most people, but I don't remember any members posting on this thread that are heart surgeons (correct me if I'm wrong). I'm not a big fan of members here dolling out advice like they are experts in the field (with the exception of Bob who does his research before commenting). It's fine to give new members information you have learned over the years, but to 2nd guess one of the best surgeons in the country can't be very reassuring to QV.

I'll drink to that!
Oops, forgot.
I don't drink anymore!

 

[Karlynn]

Ross and Karlynn...step away from the computer. You are telling the mother of a son that is very worried about him that Dr. Colvin may very well be making the wrong decision on his choice of valve (whether you realize it or not)

Bryan, excuse me please, but would you post a quote from me where I told Vicki that the doctor was making a wrong decision. Vicki posted, expressing concerns over a doctor's recommendation for a tissue valve, knowing that it would mean more surgeries for him and she was frightened of that. Her post gave no further explanation from the doctor other than he was recommending it in order to avoid Coumadin. She was very concerned. I was trying to help her see that she had the ability to take the lead.

My counsel to her was that she question the doctor to explain his recommendation and I also gave her information on Coumadin. I DO NOT believe it is wrong to question ANY doctor, no matter how stellar their credentials are hanging on their walls. I almost died because I didn't question a well-known doctor's treatment of me. Any patient or parent, at any time has every right in the world to question a doctor. Just because this doctor may have been giving her counsel that agreed with your thoughts, doesn't mean that I am a bad, uncaring person for telling her it's okay to question the doctor further, and to provide information on something the doctor is saying he wanted to avoid. I did not presume to think I knew anything about Scott's medical issues - but thanks so much for reading that into my posts. And I'm supposedly one of the reasons VR has "taken a turn"?

If you bothered to read my subsequent posts - you will see that I even stated that Scott may be better with a tissue valve given his age and ability to manage daily meds. (I'm paraphrasing.)

What was I supposed to post - "Vicki - don't be so silly. There's no need to worry about additional surgeries. The doctor knows what's best for your son."

I'm just about done with all of this. I'm tired of getting attacked via PM and Posts for simply trying to encourage people to be their own advocates and to dispel much myth and falsehoods regarding the use of Coumadin. I have NEVER told someone what type of valve they should get. I have even recommended looking to tissue valves to particular members for many reasons . I have yet to see a member (other than Tobagotwo) with a tissue valve recommend a mechanical to anyone. Yet I've seen Ross, Geebee, RCB and others with mechanical valves suggesting a member look to a tissue valve. And we're supposed to be the bullies?

You're right VR has changed. We're all supposed to believe Coumadin will kill us, surgery is "no big deal" and all doctors are beyond reproach.

I've lived well with my mechanical valve and Coumadin for over 15 years now. I do not need to justify my valve choice by making sure others think it is superior. And THIS is what I believe is truly behind the tissue vs mechanical debates. It's very childish and it has to stop.

 

[Karlynn]

I was just out fertilizing my flower beds, mulled over my post, and felt badly for my being upset coming out in a harsh way. I made a pact with myself a while ago that I would not edit my posts to remove things I regreted saying, I would just post additionally. I only edit my posts for spelling and structure errors ...when I catch them.

I believe I was singled out and accused of doing something that I did not do. I think it was a result of speed reading, or not reading the full thread, but since I was singled out I felt I needed to reply publicly rather than take it to a PM. A new member comes along, reads this about me, and anything else I have to say that may be of value to this person will not be taken seriously. So I do not regret my reply, just the tone in some parts.

Yes, I do believe much of the valve debate comes from a need to justify one's own choice. No one wants to be led to believe they made the wrong choice. But many times I think it leads to the need to denegrate the other choice - and both sides do this. And that is childish. It's also "small" to not realizing that simply replying to correct an error (risk of stroke is cumulative for instance) is not trying to browbeat someone into another choice. It is correcting a falshood that many read, not just the writer of the thread. We often speak of the need for correct information. If someone can't reply to correct information without it being taken as an attack, we lose our ability to make sure the information we present is sound.

Our mechanical valve members often get accused of being "militant". This really upsets me. What I see is a small vocal few, such as myself, who can't let bad information go unanswered. Most of this revolves around Coumadin. And there is more bad information posted about Coumadin than anything else here on VR. We spend a lot of time correcting bad information and this may be why we seem so "militant". A new member comes on and says "I'm 24 and going with a tissue valve because I LEAD AN ACTIVE LIFE." Forgive me, but that is my biggest peave. ding ding ding - What do you mean by "active life". I just can't let that statement go unresponded to. Not because I care if this person gets a tissue or mechanical, but because someone who comes on, reads it, is considering a mechanical could now think that they must live the rest of their life in a rocking chair. The original poster can opt for 6 valve replacements if they choose - in order to avoid Coumadin. But allowing the "active life" be an excuse gives an incorrect picture to someone and that is something that I believe is irrisponsible of VR to let stand.

The other important thing we do here is encourage people to be strong advocates for themselves or family members. I had 2 close calls due to my "Doctor as God" mindset I was raised with. Try to kill me once, shame on you, try to kill me twice - shame on me. I learned my lesson the hard way and fortunately I lived to correct that. We see many people come here that feel they can't question their doctor, even if they have concerns. It's okay for us to tell someone to ask the doctor why they should avoid Coumadin. Chances are, it's based on old, out-dated information. It's okay to tell a 50 year old that they'll probably get more than 10 years out of a tissue valve (a post I replied to recently) and to ask the doctor where he gets those numbers. If he tell them it's from a 20 year old study, this tells them a lot about the doctor.

We are here to empower, not silence and criticism of individual members for differences of opinion is silencing.

And now I'll be silent.

 

[geebee]

And now we know what some people do not post any longer. If giving someone the advice to question their doctors is wrong then, in the immortal words of the song, "I don't want to be right".

At least one of QV's posts contained information that indicated she wasn't sure about the medical advice she was receiving. Perhaps that wasn't read thoroughly or at all. She also indicated that she was unhappy with the thought of her son needing to go through surgery again. Why would it be inappropriate to let her know there were choices that could prevent that?

Suggesting that someone get/ask/demand all their questions be answered by surgeons/cardios or any other medical professional is not medical advice nor is it something that should not be done.

 

[Lynlw]

I always thought the one "rule" here( maybe unwritten) was when someone deciided what they and the surgeon they choose, decided what surgery, valves ect they were going to have, people just supported them and offered good thoughts. wether it would hav been the choice you personally would have made or not.
Her first post in this thread she told who the surgeon was and what they decided to do. She even mentioned his size and possible Marfans. She seemed quite fine with his advice and just wanted support.

Well thanks to all of you for your initial support. His cardio said he has a (6) aneuryism and the aortic valve must be replaced with a cow valve as he is 6'6". Also the decending aorta must be replaced with dacron (sp). We have chosen the Chief of Cardio/Thoracic at NYU Medical- Dr. Steve Colvin as his surgeon. I will have an update Thursday after our consultation. The doctor also thinks he may have Marfan's syndrome and he will be tested for that as well. Any suggestions as always is appreciated beyond words.

God Bless

it wasn't until until replies to that post started questioning their decision, did she express doubts or second guess herself and the choices.
I preferred it when a person made their minds up that all they got was support.

 

[geebee]

This post is why I thought she was questioning the choice. I apologize if I misinterpreted.

We saw Dr.Colvin at NYU and we're just waiting to find out exactly what day. The Dr suggested we use a porcine/or bovine valve that way we don't need to use Coumadin. I am very upset that this will have to be done again when the valve wears out. Doing this once would be enuf. But at 18, it seems like IF he lives a long life he could need replacement every 15 years! It makes me so so sad. His father passed in 2004 so it's all on my shoulders. Plus my other son is graduating from college May 20th. I feel more than overwhelmed...........

 

[Lynlw]

This post is why I thought she was questioning the choice. I apologize if I misinterpreted.

Yes, but my point was, in her origonal post she didn't question the choice, she just stated what was going on who the surgeon was and what he would be doing.
then the post you copied was a few days later, after people here questioned her and Dr.Colvin's advice

 

[Ross]

Point-Counterpoint. It can go on forever, but it's over, so lets move on. How about a nice game of Global Thermonuclear War instead? You folks know that one right? Of course you know, where the only winning move is NOT to play the game.

 

[Cooker]

Point-Counterpoint. It can go on forever, but it's over, so lets move on. How about a nice game of Global Thermonuclear War instead? You folks know that one right? Of course you know, where the only winning move is NOT to play the game.

I would rather play Twister with some EVOO

Chef

 

[Bina]

Naked twister ???

 

[Cooker]

Naked twister ???

Any other kind???

 

[geebee]

Yes, but my point was, in her origonal post she didn't question the choice, she just stated what was going on who the surgeon was and what he would be doing.
then the post you copied was a few days later, after people here questioned her and Dr.Colvin's advice

Lyn,

I am still a bit confused. The post I quoted was the first one QV made after seeing Dr. Colvin and she expressed concerned about the bovine choice and repeated surgeries. Granted, she did mention earlier that her cardio had mentioned a bovine valve but that was prior to the visit with Dr. Colvin and did not actually say that SHE had decided lon a bovine valve, only that this was the cardio's choice. In addition, in that first post, QV asked for suggestions.

I also feel it was unfair of Brian to indicate the first questioning of Dr. Colvin came from Karlynn and Ross when, in fact, it came from QV. Again, if I am wrong, I apologize but I did look back because I felt there was some inappropriate and rather harsh criticism of people simply trying to help and make sure all sides were presented which is still what VR.com is supposed to be about.