My 15 yo daugther - soccer dreams on warfarin

[henkac]

Hi!

I´m the father of a 15 year old daughter who had an OHS 3 days after her birth. Since then she´s lived a more active life than any doctor ever expected, full of sports and other activities. She´s currently playing youth soccer for one of Europe's highest-ranked clubs and are in the selections for the youth national team. None of this is anywhere close to the miracle of her just being healthy and alive. But it does maybe explain some of my questions.

She´s been closely examined all her life and it has now been confirmed what we knew could be the case. She´s got a very high level of fitness but her aortic valve is leaking and we have now come to a point where the valve needs to be replaced. It´s not an emergency and can be well-planned for the fall, which is fantastic. Her doctors say she only really got one option, a mechanical valve, due to her young age. We understand the reasons for this and are fairly confident with the long-term benefits of that as an option. Of course, it feels real though knowing your 15 year old child will have to live on warfarin for the rest of her life. But we try to view positive and optimistic even in life's toughest times. As you might already have understood, a big concern is our daughter being forced to give up on her biggest dream in life, which she has worked so hard for against all odds. Soccer is her life. It is to many kids...but to her it has always also been a special feeling to be able to play at that level against the odds she was born with.

Now, I understand everyone (doctors including) saying: be happy about the time you got playing. You´ll find something else in life. Ofcourse she will. Both we and her know she won't just sit around with no direction and joy in life if she has to quit soccer. But anyone knowing what the feeling of "doing what you were made to do" is like can relate to this. We know for sure life won't end for her because she has to give up on soccer. So that´s not really my question here. She´ll be fine.

BUT non of us are really people settling with "I guess this is what life gave me".
I´ll try to just skip more context and get on my real question.

I´m not gonna let my daughter take straight-up devastating risks because of her soccer dreams. But I will definitely support her in pushing every boundary in life to live her life to the fullest (in all parts of lives) as long as within "reasonable risks". English is not my main language and I´m not sure if this makes sense language-wise. What I mean is neither my daughter or I are looking for what the safest point of making it through life is. But how much we can do in life, without getting to the point where the risk is just not reasonable any longer. I really hope I can describe this balance without coming out as a crazy dad. I´m not ( I think). I just want my kids to live as much as they ever can.

So warfarin. I´ve worked for more than 20 years in competitive sports and read research on a daily basis. Not about warfarin before, but I´m pretty confident in basic reading of research papers. Since the doctors informed us about this a couple of weeks ago I´ve been reading Warfarin research for hours every day, It´s impossible to do that and NOT see the risks with warfarin in general and potentially in playing competitive soccer. First I was looking into the option of asking the doctors re-evaluate the option of a tissue valve and then replace that with a mechanical one at a later point in life. But reading the warfarin papers and also stories from young persons on warfarin, also makes me question if life on warfarin really has to be equal to a life without the sport my daughter loves to play. No questions there are risks. There´s always. The question is if it´s reasonable not to justify doing what you want to do. There are lots of risks (some with comparable rates) that we live with anyway. There are so many other factors in many of the warfarin research, as I find it, that act as factors to the highest risks with warfarin.

Example. One research says mortality from head injury was 22% for people on warfarin and 18% for non-warfarin. That is a significant difference. But still, if we talk about injuries in wich 18% on non-warfarin die it´s either really serious accidents or pateinets with other hight risk factors. And would then the increase from 18% to 22%, in such devastating situation anyway, being a reasonable reason to quit doing something that really makes you happy in life?

I´ll just let this be the start of a thread that can hopefully help me in this.
I´m searching for more knowledge on risk rates for well trained teenagers, injuries from sport on warfarin. Evryone is sports says it´s a total no. But most of it is built on research on fall incidents of 70+ year old persons with a multitude of other risk factors. I have a mother with Parkinson. I know all about driving home to her in the middle of the night and taking her to the ER due to a fall with blunt head trauma. Doing it 1-2 times every month. If it´s fully transferable and the risk for my daughter to die on that pitch, it is unreasonable. There´s no way we´ll let her play any soccer. But if the risks are overrated (as I tend to question) for a well-trained teenager playing, learning to avoid unnecessary risk situations and maybe play with a headgear, then I will probably try to help my daughter find a way to do what she loves and live her life pushing her boundaries as far as she wants (withing reasonable risks).

As you can tell. I´m full of questions and I´m looking for people to discuss with outside of the family and the doctors. To get perspective and knowledge of things I´m just in the begging to learn about.

I know the risks with Warfarin. I´m just not as sure if the known risk rates are transferable to teenagers with no other diagnosis. If it is mu daughter will find other things to enjoy in life. But if it´s not I think it would be really sad to limit her for no reasonable reason.

(I hope I don´t come out as a crazy dad...)

 

[pellicle]

wow ... quite an essay ... can you summarize the question into one paragraph?

Hoping that I understood, my answer is this:

Warfarin does not cause bleeds, it only makes their duration longer. The only thing to be concerned about is an IC bleed and if you get a stout head knock you should get that investigated at hospital (CAT scan)

This combined with properly managing INR to the 2 ~ 3 range will mitigate almost all issues.

Your doctors sound like they are repeating the 1980's advice (30 years later), I hope they didn't also say "avoid greens"

Best Wishes

PS: there is another lady here who has a daughter (not as active as yours) whom she manages her INR (in conjunction with a lab). I'll mention her in on this @kevanndo and she may have something to add to this to ease your mind.

 

[pellicle]

English is not my main language and I´m not sure if this makes sense language-wise.

actually I think your English was pretty spot on

 

[henkac]

Thank you @pellicle
I´m thinking the same when I hear those advice and can not really see that as the one and only path of life on Warfarin by studying research. But it makes you wonder when that´s everything you hear. In sports as soccer the only thing you hear/read is "a mechanical valve would be the end of his/her days in soccer due to the warfarin". I fully understand the risks but just don´t see it as clear as "the end" when I study research (and stories from actual life) as those saying things like that (doctors included) do.

Heading the ball is a topic for discussion in soccer and many years from now I actually think it will be out of the game. But that will take some time. But nowadays exposure to it is minimized in practice and head injuries are taken much more seriously to any player in games. In Europe, every obvious hit to the head should pause the game and be examined (not always fully practiced).

Would any hit (more than light touches) to the head need her to stop practice/game and be examined? How much risk would heading the ball constitute? She´s not a player heading a lot anyway but every now and then it´s just the only option. There´s a risk to any player with headings but would it be a lethal risk to my daughter doing it on warfarin?

 

[pellicle]

but would it be a lethal risk to my daughter doing it on warfari

My view is no, consider carefully my above words meaning and implications. An IC bleed can happen and warfarin will not cause that, but it will exacerbate that by extending duration.
If any IC bleed occurs in anyone it's dangerous and requires treatment. Look this up, discuss with medical and sports medicine professionals. Don't mention warfarin.
Ask what is the way to diagnose it, how is it best diagnosed in the field, how is it associated with concussions.

Then weigh risks.

Do you understand what the one scale is? It's a ratio of the time a clot takes to form for a person on warfarin vs a normal person. Thus 2 means twice as long and 3 means three times as long.

I would suggest keeping away from heading the ball.

I recommend also you have a read through this blog post, while it does not directly address your specific sports related question it provides some other information that you will find handy.

https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
Where are you on the globe (and what is your native language if not English)

Best Wishes

 

[vitdoc]

If she is that good and wants to continue in soccer she might be one of the few young people who could consider a repair or a tissue valve which would have to be re operated on down the line. One other option might be a mitral clip which would avoid warfarin and could work for years. Theoretically she could play with warfarin but she probably would get badly bruised and maybe worse at her level of play. Check out the mitral clip.

 

[RAS]

There´s a risk to any player with headings but would it be a lethal risk to my daughter doing it on warfarin?

Greater degree of risk I would say, but the critical question is would she even have a choice to continue playing in this scenario?

In the US, American Football players for example would not be allowed to play while on warfarin. This is a team medical decision and probably includes legal liability as a factor. A well known college football player locally had to go on warfarin for a few months due to blood clots in his leg and was not allowed to play until he was off warfarin. Later when he played professionally, the clots occurred again and he had to permanently take warfarin. That ended his career.

There was also a local college basketball player who had a valve replaced. He chose tissue so he could continue playing. While not specifically stated, the implication is that he could not have played with a mechanical valve/warfarin.

I don't follow soccer or know anything about how it works in Europe, but I recommend you discuss with sports medical professionals to find out whether the player is even allowed to make the decision to play while on warfarin. This will be one of many factors for your daughter to take into account.

As to whether she should go tissue or mechanical - that will depend on comparing the risks of each option and determining which are acceptable to her and which are not. While a tissue valve will almost certainly require a repeat OHS in the future, that may be a risk she is willing to take if it allows her to continue playing competitive sports.

You are doing the right thing by researching and asking questions!

 

[TomM]

"Her doctors say she only really got one option, a mechanical valve, due to her young age" - I think I would take the doctors advice. I'm thinking there could be more factors involved than your daughters age. You should question this. Why I say this is that I was offered a tissue valve replacement at 17 and again at 22. There is a big risk to take here with repeat open heart surgeries that are pretty much inevitable with tissue valves at that age.

The type of surgery I had was ultimately my decision and not my parents one at both ages as I guess they realised that I would be living with my decisions.

Having said this your concern is if your daughter can continue to play soccer at such a high level with a mechanical valve. Similar to what @RAS says above, one thing that comes to my mind is that recently Christian Ericksson, the Danish footballer could not continue playing in Serie A, as I understand it, because the league could not allow it due to the ICD he had implanted for his heart condition. Your daughters footballing career may be hindered, depending on the surgery she has, by rules of the league - you could check this out

 

[carolinemc]

Hi!

I´m the father of a 15 year old daughter who had an OHS 3 days after her birth. Since then she´s lived a more active life than any doctor ever expected, full of sports and other activities. She´s currently playing youth soccer for one of Europe's highest-ranked clubs and are in the selections for the youth national team. None of this is anywhere close to the miracle of her just being healthy and alive. But it does maybe explain some of my questions.

She´s been closely examined all her life and it has now been confirmed what we knew could be the case. She´s got a very high level of fitness but her aortic valve is leaking and we have now come to a point where the valve needs to be replaced. It´s not an emergency and can be well-planned for the fall, which is fantastic. Her doctors say she only really got one option, a mechanical valve, due to her young age. We understand the reasons for this and are fairly confident with the long-term benefits of that as an option. Of course, it feels real though knowing your 15 year old child will have to live on warfarin for the rest of her life. But we try to view positive and optimistic even in life's toughest times. As you might already have understood, a big concern is our daughter being forced to give up on her biggest dream in life, which she has worked so hard for against all odds. Soccer is her life. It is to many kids...but to her it has always also been a special feeling to be able to play at that level against the odds she was born with.

Now, I understand everyone (doctors including) saying: be happy about the time you got playing. You´ll find something else in life. Ofcourse she will. Both we and her know she won't just sit around with no direction and joy in life if she has to quit soccer. But anyone knowing what the feeling of "doing what you were made to do" is like can relate to this. We know for sure life won't end for her because she has to give up on soccer. So that´s not really my question here. She´ll be fine.

BUT non of us are really people settling with "I guess this is what life gave me".
I´ll try to just skip more context and get on my real question.

I´m not gonna let my daughter take straight-up devastating risks because of her soccer dreams. But I will definitely support her in pushing every boundary in life to live her life to the fullest (in all parts of lives) as long as within "reasonable risks". English is not my main language and I´m not sure if this makes sense language-wise. What I mean is neither my daughter or I are looking for what the safest point of making it through life is. But how much we can do in life, without getting to the point where the risk is just not reasonable any longer. I really hope I can describe this balance without coming out as a crazy dad. I´m not ( I think). I just want my kids to live as much as they ever can.

So warfarin. I´ve worked for more than 20 years in competitive sports and read research on a daily basis. Not about warfarin before, but I´m pretty confident in basic reading of research papers. Since the doctors informed us about this a couple of weeks ago I´ve been reading Warfarin research for hours every day, It´s impossible to do that and NOT see the risks with warfarin in general and potentially in playing competitive soccer. First I was looking into the option of asking the doctors re-evaluate the option of a tissue valve and then replace that with a mechanical one at a later point in life. But reading the warfarin papers and also stories from young persons on warfarin, also makes me question if life on warfarin really has to be equal to a life without the sport my daughter loves to play. No questions there are risks. There´s always. The question is if it´s reasonable not to justify doing what you want to do. There are lots of risks (some with comparable rates) that we live with anyway. There are so many other factors in many of the warfarin research, as I find it, that act as factors to the highest risks with warfarin.

Example. One research says mortality from head injury was 22% for people on warfarin and 18% for non-warfarin. That is a significant difference. But still, if we talk about injuries in wich 18% on non-warfarin die it´s either really serious accidents or pateinets with other hight risk factors. And would then the increase from 18% to 22%, in such devastating situation anyway, being a reasonable reason to quit doing something that really makes you happy in life?

I´ll just let this be the start of a thread that can hopefully help me in this.
I´m searching for more knowledge on risk rates for well trained teenagers, injuries from sport on warfarin. Evryone is sports says it´s a total no. But most of it is built on research on fall incidents of 70+ year old persons with a multitude of other risk factors. I have a mother with Parkinson. I know all about driving home to her in the middle of the night and taking her to the ER due to a fall with blunt head trauma. Doing it 1-2 times every month. If it´s fully transferable and the risk for my daughter to die on that pitch, it is unreasonable. There´s no way we´ll let her play any soccer. But if the risks are overrated (as I tend to question) for a well-trained teenager playing, learning to avoid unnecessary risk situations and maybe play with a headgear, then I will probably try to help my daughter find a way to do what she loves and live her life pushing her boundaries as far as she wants (withing reasonable risks).

As you can tell. I´m full of questions and I´m looking for people to discuss with outside of the family and the doctors. To get perspective and knowledge of things I´m just in the begging to learn about.

I know the risks with Warfarin. I´m just not as sure if the known risk rates are transferable to teenagers with no other diagnosis. If it is mu daughter will find other things to enjoy in life. But if it´s not I think it would be really sad to limit her for no reasonable reason.

(I hope I don´t come out as a crazy dad...)

Do not follow the fake misinformation on internet at unreliable fake resources. Go to reliable heart information resources like American Heart Assocation, WebMd, and many well known medical heart information resources. Many of the misinformation sources are old and outdate information. No need for headgear unless she is into football. Better to see how things are after surgery. Till then, as long as the doctors say she can do what she loves, do not restrict her unless her health is in crisis mode. Let her be a kid. Many adults are on warfarin and play major sports in football. basketball and other sports. Good luck and best wishes to your daughter.

 

[Woodcutter]

Hi. I'll share a couple anecdotes as food for thought. As an intro, I've been on warfarin for almost 20 years . . . about a decade before my mechanical mitral valve went in. It was initially for a pulmonary embolism. I recall the hematologist who first prescribed home monitoring for me distinctly saying that the risk with warfarin was about a 2% chance of dying each year and it's cumulative. Well, I'm an engineer who's done a lot of work with statistics and, like you, was not adverse to a little research. It did not take me long to just start laughing at these statements. I also quickly found it wasn't worth my time to debate "nonsense math".

I fall firmly in the camp of you can do what you want . . .. within reason.

Soccer story: daughter about the age of yours was on a competitive team. I'm in the U.S. so I'd call it something like a county level; below state, and certainly not national. She took a ball to the head. Actually the eye. As a parent I will share that hearing her on the ground screaming "I can't see" was worse to me than any of my surgeries! We were fortunate enough to be literally sitting next to a doctor (cardiologist actually) and were only about 1/2 mile from a hospital. While we got her calmed down and ready for transport the doctor greased the wheels at the ER and I have never seen such service in my life. The ophthalmologist who got routed in from an hour away said "yeah, I can see the ball stiches on her cornea". OK, not a warfarin story. But I am sure you get my first point(she was not trying to head a ball). My second point is that all ended up just fine and she - with doctors approvals - was back on the field in just a couple of weeks. Requirement was to wear protective goggles going forward. So she did. I was the one on warfarin, not her! If she had been what would have happened. More internal bleeding I am sure. What else? Don't know. Bottom line is if I, or she, was seriously interested in something, I'd do all I could to find a reasonable accommodation. Personally, I do a lot of woodworking and have an above average number of chainsaws (and many other types of saws) that I use regularly . . .. but I am not interested in chainsaw carving. Works for me. Some others perhaps not.

As others have noted, in the U.S. (and I am sure elsewhere), there is a level at which organizations simply will not allow people with certain conditions to play. It's a medical/legal/financial assessment that I simplify by saying that once enough money is involved, the organization simply prohibits acceptance of that risk. Professional leagues certainly do this but I've seen it down to youth leagues (and sometimes not!). My speculation is that as you are dealing with a known heart valve issue you are (or are close to) running up against this anyway.

My understanding is the Ross procedure is sometime pursued for situations resembling what you have posed. I've only personally know one person who did this and he was a 30 year old runner at the time. When I discussed it with him some 35 years later his decision had been about avoiding warfarin and he was quite happy with it. That approach brings with it a different set of risks and the fundamental issue of choosing to go from one problematic valve to two. Teenage girl: you've got to be thinking about future motherhood . . . . there are useful threads on that in this forum. Future surgeries? I was actually surprised by the sheer number of ACL surgeries that teenage female soccer players in the U.S. undergo (and quite different from boys at certain ages).

I'm sure your cardiology team is addressing the heart size issues of a teenager (is it done growing?) (confidence this can be a last surgery?)

Above was input as some thoughts around "what can she reasonably do?". Subjectivity will abound in the answers but the group here can provide lots of experience that is real.

 

[vitdoc]

I´m the father of a 15 year old daughter who had an OHS 3 days after her birth. Since then she´s lived a more active life than any doctor ever expected, full of sports and other activities. She´s currently playing youth soccer for one of Europe's highest-ranked clubs and are in the selections for the youth national team. None of this is anywhere close to the miracle of her just being healthy and alive. But it does maybe explain some of my questions.

In my previous post I thought your daughter had mitral regurgitation and I mentioned a mitral clip. This unfortunately is not currently an option for aortic regurgitation so please disregard my previous suggestion.
If your daughter doesn't get a repair or a tissue valve she will have to have another procedure in the future. There are advances being made all the time.
If she got a mechanical valve with the current technology she will be on warfarin or something similar probably the rest of her life. So even though a second procedure would be needed if she did not get a mechanical valve in her particular case is may be worth considering. Also as a young active person if she has a tissue valve it may not last very long. But there may be better options by the time she would need a new valve. At worst she would delay getting a mechanical valve by probably 5-10 years or possibly longer is she is fortunate.
Clearly if the idea is to be one and done then a mechanical valve currently is the only choice.

Way back in 1977 I got a tissue aortic valve when I was 29. Nobody had a clear idea of the longevity at that time. So 5 1/2 years later I had a St. Jude placed when the tissue valve had started to fail. In my case I was sort of lucky since in 1977 when I got the first valve the St. Jude did not exist. In 1983 it did. Otherwise I would have gotten a lesser mechanical valve in 1977. There are trials going on with non tissue valves that may not need anticoagulation. So in the future we may have better options then currently.
Each procedure does have some risk so having a second surgery is not to be taken lightly. But in a healthy person the risks are relatively low.
So discuss these issues with the doctors involved and your daughter.
By the way where are you from?

 

[pellicle]

Teenage girl: you've got to be thinking about future motherhood . . . .

this was a question which arose in my mind immediately as well, but then if you look at her age then you can pretty much quickly run forward to the fact that her bio valve (or even a Ross) will unlikely last more than 10 years (statistically speaking) and not knowing her other complications when I read " Her doctors say she only really got one option, a mechanical valve, due to her young age" and knowing the propensity for a preference for tissue valves to avoid patient compliance with AC Therapy (aka ratsak) I wondered about why that may be, perhaps they knew something I didn't.

This is also why I asked the question of geography.

Two things come to mind with respect to that above question you raised and then the general issue of the sport:

1. there are women here who have reported that they have had a pregnancy and a delivery with a mech valve. In the main they have swapped AC therapy at the appropriate trimesters to prevent the foetal risk conditions associated with warfarin
2. an ex girlfriend of mine was a high level teacher trainer of sports training and she lamented the many destructions of lives of budding young candidates obsessed with success in sports and an eye to the Olympics (yes, I'm talking about that level). She reported that many fell by the wayside and having not focused on what to do after they get a gold medal became low level unskilled workers. She hated sport for that.

The geographic location question will in part answer the sort of medical treatment likely in a sports event. As you would probably know it is not the injury per se but the delay in getting appropriate treatment in time.

Best Wishes

 

[pellicle]

Do not follow the fake misinformation on internet at unreliable fake resources.

which if you believe that must include you ... which brings us around to "why even ask any questions here?"

Or you can accept that the asker is an adult capable of listening to his medical teams and then asking for personal experiences and then considering and evaluating things based on rational thought.

 

[MdaPA]

Her doctors say she only really got one option, a mechanical valve, due to her young age.

How many surgical options has she gotten? Is she a candidate for a AV repair? As Woodcutter stated, it sounds like her situation might also indicate a Ross procedure. Suggest seeking several surgical opinions as I'm sure you will find that mechanical may not be her only option.

One question to ask would be how long would they expect a mechanical valve to last after being implanted in a 15 year old before it needed to be replaced? i.e. would she be looking at another replacement 30 or 50 years down the road?

 

[kevanndo]

I'm the mom @pellicle mentioned above. My youngest daughter is 17 now, and she received a mechanical mitral valve when she was 9 years old. Like your daughter, she had her first OHS shortly after birth. My daughter has never participated in any contact sports, but she also never expressed any interest in them, so I never had to confront the kinds of decisions you and your daughter are facing. That being said, I personally would never have chosen a tissue valve for my daughter in order to allow her to play sports, even if she were incredibly gifted. From what I understand from discussions with my daughter's physicians years ago, tissue valves are notorious for calcifying much more quickly in children than in older people. Making that decision--playing soccer at an elite level vs. another open-heart surgery in possibly a few short years--honestly, that wouldn't even have been an issue for me. I think there's a different kind of responsibility that you face when you're making a decision for a child vs. for yourself. It's a much heavier burden, as I'm sure you realize from having to watch your daughter undergo her first surgery as a baby. Watching my daughter go through the experience three times before the age of ten has thoroughly convinced me that I'd like to avoid a fourth time at all costs!

 

[cooperman]

I think the only potentially good viable other option besides a mechanical valve is the Ross procedure. I had one at the age of 20, and the valves lasted for 20 years. No meds, no restrictions other than no repetitive heavy lifting. I recently had both my aortic and pulmonary valves replaced again at age 40 and am on warfarin. I do physical work for a living and constantly have bruises because of it. I avoid soccer and basketball because I don't want to take the beating or get smacked in the head. Definitely changes what you are willing to do and risk.

 

[henkac]

Thank you all for your engaging answers. much appreciated.

We live in Sweden. Our cardiac clinic and doctors are often mentioned as "world-class" and we are confident in them being highly skilled. With that said we all know that even between different top-class professionals in any area, there are different views and convictions. Doesn´t make them wrong, just different experiences etc.

Regarding the hospital. One of the country's leading hospitals is literally just across the street of my daughter´s team´s home ground. From some of the rooms at the hospital, you can watch the games from the window. With that said, there are lots of away games too.

She was born with a transposition, an interrupted aortic arch and the leaking aortic valve. Everything but the valve was successfully fixed in her first OHS and the doctors have no concern about them. The issue with other options than mechanical is her young age and their concern the transposition surgery has made the area a bit tight and they don´t know how many OHS "there´s left" before the scar tissue will become a problem. This is the reason my main question is not about choosing valve type. We´re pretty convinced a mechanical valve is the option. This is why my questions will mostly be about life on warfarin, But if there are other options to consider I'd love to learn more.

As I´ve written before. The end of soccer, would definitely not be the end of life. There´s so much more than soccer and sport of course. But it´s not just "nothing either": Anyone finding "their thing" knows it so much more. After our daughters birth, doctors said "she´ll have a good life, but probably will not be able to do highly active stuff". Here she is at national elite level youth soccer and pushing boys one year older for the podium spots in school´s 800m races. Today the doctors say she´s probably so much more fit then any of them could imagine because we never stopped her and always allowed her to test her limits as long as we didn´t find any reason to hold her back. She´s not short of breath or tired. Making this surgery at 15 will not make her feel like she finally will be able to do more. Right now all she can see is warfarin taking away what she loves the most and actually can do now. She´s not the only one experiencing this of course...but being 15 and having to stop now is hard on her. She has said from day one she wants a tissue valve. She has no fear for the OHS, only what the warfarin will do to her life after it.

We´re well aware sports foundations will have lots to say if she would decide to try and we´re fully aware of that the chances are very small at all for her to play a sport like soccer. We will not let her take unreasonable risks just for soccer. But the more I studdy about warfarin the more wonder what today's advice a built on and if it really is unreasonable risks if you use every tool there is to reduce risks. Itf it really would be able to try within reasonable risks...then it would be sad for both our daughters and everyone holding back because of advice that has not been challenged in a healthy way.

I here myself like a real crazy guy now (in my swingslish head). In Swedish it makes sense .

So my questions are everything about what´s actually the most up-to-date knowledge and advice. Is there anyone professional, not being a lunatic, thinking different than the standard advice on this? Again..many lunatics do, I know. That´s not what I´m looking for. If not..then we´ve tried all we could to help our daughter giving it a try as she wants, and we´ll focus on how to support her in life without soccer. But I´m not willing to not try as much as I can.

I think many of your answers are already helping me to expand my thinking and inspire where to keep searching and learning. So much appreciated! And I´ll work as hard as I can to write shorter from now on.

 

[vitdoc]

I could not find any specific articles on warfarin and high level sports. My own experience with 39 years on warfarin for a mechanical aortic valve has been pretty good but not perfect. I fell off a bicycle going about 20 mph and got a massive hematoma in my leg that probably had at least two units of blood in the leg. Very painful , took about two months to clear. Occasional hematomas from lesser injuries. I don't mountain bike due to the frequency of falling but I have skied, played basketball and still road bike. I think that the heading in soccer and being kicked and pushed down might make soccer a less than desirable activity.
As mentioned the other big issue for females is the problem of pregnancy while on warfarin. The recommendation I believe is going on low molecular weight heparin at least for the first trimester. Not fun with injections generally twice a day.
So probably no soccer at least at a high level. However other less contact activities can be relatively safely done. The pregnancy issue needs to be discussed further with the physicians.

 

[pellicle]

Hey ... Sweden, next door to where I used to live.

So my questions are everything about what´s actually the most up-to-date knowledge and advice. Is there anyone professional, not being a lunatic, thinking different than the standard advice on this?

some points

1. no medical professional is going to out themselves here (can you imagine that)
2. no medical professional is going to give guidance that enhances risk
3. the data that I've given (can't speak for others) is based on my extensive readings (check my many posts here over the decade or reach out) and most is on my various blog posts about INR
4. understanding that 99.9% of warfarin users are over 50 is an important point, and vascular resistance to rupture is dictated also by age (meaning less likely to survive an impact due to the loss of elasticity)
5. your daughter has a connective tissue disorder (as does anyone with BAV and that makes for some change in the strength of vascular systems.

I would reiterate to read my previous replies and consider the implications. (*for example the ability to get treatment from a head injury caused IC bleed and the ability to reverse coagualtion quite rapidly with Vitamin K injections)

terevetuloa

 

[pellicle]

@henkac

I would say of this point:

So probably no soccer at least at a high level

that from the beginning my surgeons guidance was sport, but no high level competitive sports.

I guess its hard to juggle levels, but after some years I know what he meant.

People die doing things ... and it always seems to most people that "it always happens to someone else"