My 15 yo daugther - soccer dreams on warfarin

[henkac]

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

Kiitos @pellicle! My wife is from Finland and we´ve spent a lot of time over the years in Finland. Do you miss anything about Finland?

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

Fully understand. I´m reading as much warfarin research and medical papers as I can to get that input. What I hope (and already seem to do) is to get the "real experience" from people living on/with Warfarin in this forum. But also hope to maybe get pointed to some professional that do challenge (in a healthy way and based on real knowledge) the common view of modern warfarin practice and advice. If those exist.

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)

Yes, and 99.9% of all patients in studies of warfarin are over 65. 55 being considered "young objects". Reserach show age is a big risk factor of bleeding, overweight is, diabates, deminthia and other common diagnosis of older population are, un-controlled INR seems to be.

What then with a highly fit teenager, with no other diagnosis, self monitored INR etc? What are the risk rations then? Only with that knowledge we can actually know water the risk is reasonable or not. If risk is much difference it would be horrible to limit the lives of teenagers due to risks analysis made on a completely different population. I know I´m pushing it a bit now...but I hope you get how I think.

 

[pellicle]

Do you miss anything about Finland?

lots ... starting with the some of the food and certainly the outdoors in the winter

Fully understand. I´m reading as much warfarin research and medical papers as I can to get that input. What I hope (and already seem to do) is to get the "real experience" from people living on/with Warfarin in this forum. ...

us is about as good as you'll get

Yes, and 99.9% of all patients in studies of warfarin are over 65. 55 being considered "young objects". Reserach show age is a big risk factor of bleeding, overweight is, diabates, deminthia and other common diagnosis of older population are, un-controlled INR seems to be.

pretty much that

What then with a highly fit teenager, with no other diagnosis, self monitored INR etc? What are the risk rations then? Only with that knowledge we can actually know water the risk is reasonable or not. If risk is much difference it would be horrible to limit the lives of teenagers due to risks analysis made on a completely different population. I know I´m pushing it a bit now...but I hope you get how I think.

I think I understand ... the problem is you seek "papers" on subjects which are just not of interest to researchers, even if there were exact papers you would have the problems of study group size and transferability of the results to you

 

[Woodcutter]

Henkac: I agree with you about being a crazy dad . . . and I mean that as the highest of compliments! I'd also say your English is better than my American!

If you have not already, you may want to investigate general antiacoagulation in athletes [e.g. Athletes and Anticoagulation: Return to Play After DVT/PE - American College of Cardiology (acc.org) ]. This won't directly answer, let alone solve, the questions/issues around warfarin/mechanical heart valves, but I think you'll find interesting things to think about, especially regarding future developments. Both with elite athletes and with patent protected anticoagulants, there is lots of money involved; hence there is activity.

 

[Superman]

Yeah, unfortunately there just isn’t much info out there on kids and warfarin. Anecdotally, I’ve been hooked on the stuff since I was 17. Unfortunately this was really passed the point of engaging in any organized team sports at the level you’re talking.

Risks exist. I’ve dropped furniture on my foot, fractured an elbow and a thumb, gone over the bars on my mountain bike, played American football tackle without pads (playground stuff), played basketball at our local health club and took a nasty elbow in the eye, went downhill skiing, coached youth baseball and taken a line drive off the ribs (as coach, you’re supposed to get out of the way, not catch the kids out), etc.

Not saying I made the safest choices. I chose to live and accepted certain risks. If the league allows her to continue to play (that’s a big ‘If’), then ultimately the decision will be hers with hopefully the guiding hand and support from you. Or yours with a hopefully understanding daughter that knows you have her best interest at heart. But if she plays, it will be an acceptance of risk. Just how great a risk is where the information is lacking. Due in part to lack of high level athletes and young people on warfarin.

 

[carolinemc]

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!

It is understandable that in your daughter's case, she has had 3 surgeries so far. And having a St. Jude's valve is not bad idea at all. And Tissue valves calcify quickly, no matter the age. So glad they was able to help her at that young age, for when I had my repair bypass, they was barely doing natal open heart, they was still perfecting the surgical techniques. But as the years passed, they did the natal surgery with the tiniest tools and now it is done on a regular basis. It is never easy for the parent or the child to go through this at any age. But now they can help make it were it could be a long time before the next one. For the lifetime guarantee is not always life, but it keep us from having too many procedures. Got with your mother gut, it never is wrong.

 

[Chuck C]

Yeah, unfortunately there just isn’t much info out there on kids and warfarin. Anecdotally, I’ve been hooked on the stuff since I was 17. Unfortunately this was really passed the point of engaging in any organized team sports at the level you’re talking.

Risks exist. I’ve dropped furniture on my foot, fractured an elbow and a thumb, gone over the bars on my mountain bike, played American football tackle without pads (playground stuff), played basketball at our local health club and took a nasty elbow in the eye, went downhill skiing, coached youth baseball and taken a line drive off the ribs (as coach, you’re supposed to get out of the way, not catch the kids out), etc.

Not saying I made the safest choices. I chose to live and accepted certain risks. If the league allows her to continue to play (that’s a big ‘If’), then ultimately the decision will be hers with hopefully the guiding hand and support from you. Or yours with a hopefully understanding daughter that knows you have her best interest at heart. But if she plays, it will be an acceptance of risk. Just how great a risk is where the information is lacking. Due in part to lack of high level athletes and young people on warfarin.

Very well said!

 

[pellicle]

Not saying I made the safest choices. I chose to live and accepted certain risks.

I'm going to say that nobody who succeeds at anything took the safest choices and that (I hope) they understood the risks and were fully able to accept them.

I rode dirt bikes (and what would later be called BMX) around in the bush near where I lived. Back then there were many trails and the population was as yet small enough to not cause problems. None the less at my school two boys were killed in a head on collision on the tracks. I from then on I took more care in corners and listened for other riders (2 stroke MX bikes make a lot of noise). Did I understand? I don't really know. But as Jordan Peterson said:

Don't remove risk from life – let children optimize for it and improve their competence. Let boys push against authority and toughen up and do some seemingly dangerous things. Hence his rule: “Do Not Bother Children When They Are Skateboarding.” ​

My question to @henkac is: is your daughter old enough to understand and accept such risks and then make the personal decision to take them (or are you doing that for her).

I (having been in a different situation at 13) decided to mitigate my risks by choosing a different sport in my time of recovery (and having like Superman been excluded from sport from about 6yo to then) had no love of Soccer or Rugby League (the Football in most of Australia). I did fencing then Judo (briefly) then Aikido.

Best Wishes

 

[henkac]

As you would probably know it is not the injury per se but the delay in getting appropriate treatment in time.

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!

Thanks for replying @kevanndo. Agree that a few years of "maybe" elite soccer could not be the main priority in making decision for a teenagers future health. As of right now, the tissue option is not something we consider that much. But we want to explore every option before it´s done. Because once it´s done with a mechanical, it´s a decision for the rest of her life (as it seems). But mechanical is ourmain option at the moment and living life to the fullest on Warfain is what we "explore" the most right now.

Do you have any experience about the life of a teenage girl living with warfarin you think is important to have in mind for us? What do you think are the biggest differences than the teenage life without warfarin?

 

[nobog]

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?

A mechanical valve should last 100+ years.

 

[pellicle]

A mechanical valve should last 100+ years.

That is quite true, but other things end up requiring redo surgery, such as the emergence of an aneurysm.

For instance Superman has had just such an intervention. I had a homograft in the process of failing it was however the the aneurysm which drove the intervention on me. They proactively removed my still functioning (turned out to have been calcified anyway) valve and put in my existing mech in order to reduce surgical counts.

For BAV I would say that such an intervention is indeed a significant possibility in the future (and should not be discounted).

It is of course always a matter of plan for what you know (and we know that a tissue prosthesis won't last long in that situation), then additionally understand and accept what may happen. So I would tend to agree with the Swedish surgeons that for her at this point a mechanical would be the best option too.

I note that in Sweden and Norway that people under 50 are more often given mechanical valves, but in the USA that seems not to be the case. I would suggest research is needed to determine why (although I wouldn't be surprised to learn its about business).

PS: because (also @henkac ) I was part of a 29 years 99% complete follow up study on homografts I know the results for that and would not recommend a homograft for her given her age:

Freedom from reoperation for structural deterioration was very patient age-dependent.​

For all cryopreserved valves, at 15 years, the freedom was​

• 47% (0-20-year-old patients at operation),
• 85% (21-40 years),
• 81% (41-60 years) and
• 94% (>60 years).

Root replacement versus subcoronary implantation reduced the technical causes for reoperation and re-replacement (p = 0.0098).​

 

[henkac]

I'm going to say that nobody who succeeds at anything took the safest choices and that (I hope) they understood the risks and were fully able to accept them.

My question to @henkac is: is your daughter old enough to understand and accept such risks and then make the personal decision to take them (or are you doing that for her).

I (having been in a different situation at 13) decided to mitigate my risks by choosing a different sport in my time of recovery (and having like Superman been excluded from sport from about 6yo to then) had no love of Soccer or Rugby League (the Football in most of Australia). I did fencing then Judo (briefly) then Aikido.

Best Wishes

That´s a good question and something we constantly try to ask ourselves (me and my wife). We´ve tried to raise our daughter to be independent and make decisions on her own, even though once. Always with us supporting and guiding if she needs us of course. We will definitely let her make her decisions even when it comes to this life effecting decision. We will let her take the risks she´s willing to take. But we´ll make sure to support her with all the knowledge and tools needed to do it with a reasonable risk as possible. And at least for a couple of more years we will not let her take any unreasonable risks. With that said, she might find out after surgery that she´s not willing at all to take the risk of playing soccer. That will be her choice. It´s her life.


Right now she says she wants to keep playing soccer and wants to find a way to do it on Warfarin, even though she hates the thought of Warfain right now. But we really have to help her have as many as the cards as possible on the table to make that decision. Not only for soccer, but every risk she wants to tale to live the life she wants to live post suregery.

 

[pellicle]

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!

that must have been wracking.

 

[pellicle]

Hi

sorry, but I added a PS into that and as its not in what you've quoted I thought I'd bring that up

... We´ve tried to raise our daughter to be independent and make decisions on her own, even though once. Always with us supporting and guiding if she needs us of course. We will definitely let her make her decisions even when it comes to this life effecting decision.

that's of course great to hear ... its in my view what a good parent should do.

...And at least for a couple of more years we will not let her take any unreasonable risks. With that said, she might find out after surgery that she´s not willing at all to take the risk of playing soccer. That will be her choice. It´s her life.

reasonable

Right now she says she wants to keep playing soccer and wants to find a way to do it on Warfarin, even though she hates the thought of Warfain right now.

I'm going to react to the "hates" bit in that and say you should most definitely direct her away from that sort of emotional response. I recall many of the things I was told as a child and it took me probably a decade as an adult (with a great focus on my mental health) to correct for those inappropriate reactions.

I'd say that from everything I've read here you'll make the best decisions. Take post surgery as a "new world" and slowly probe the edges. Know that you have an excellent medical system and you should educate yourself in what's needed to identify and deal with signs of an IC bleed. This IMO should be done more in sport generally even discounting warfarin and I know people (an of people) who weren't on warfarin and would be in better state (because of sports injuries) now were those things in place.

Best Wishes

 

[henkac]

Yeah, unfortunately there just isn’t much info out there on kids and warfarin. Anecdotally, I’ve been hooked on the stuff since I was 17. Unfortunately this was really passed the point of engaging in any organized team sports at the level you’re talking.

Risks exist. I’ve dropped furniture on my foot, fractured an elbow and a thumb, gone over the bars on my mountain bike, played American football tackle without pads (playground stuff), played basketball at our local health club and took a nasty elbow in the eye, went downhill skiing, coached youth baseball and taken a line drive off the ribs (as coach, you’re supposed to get out of the way, not catch the kids out), etc.

Not saying I made the safest choices. I chose to live and accepted certain risks. If the league allows her to continue to play (that’s a big ‘If’), then ultimately the decision will be hers with hopefully the guiding hand and support from you. Or yours with a hopefully understanding daughter that knows you have her best interest at heart. But if she plays, it will be an acceptance of risk. Just how great a risk is where the information is lacking. Due in part to lack of high level athletes and young people on warfarin.

According to most articles you have to have a whole bunch of extra lives taking those hits on warfarin..When you get a black eye like that. Did you go straight to hospital our do would you only do that with more indications of internal head injury?

 

[henkac]

I'm going to react to the "hates" bit in that and say you should most definitely direct her away from that sort of emotional response. I recall many of the things I was told as a child and it took me probably a decade as an adult (with a great focus on my mental health) to correct for those inappropriate reactions.

That's a very good and important advise. Thank you.

 

[Superman]

According to most articles you have to have a whole bunch of extra lives taking those hits on warfarin..When you get a black eye like that. Did you go straight to hospital our do would you only do that with more indications of internal head injury?

No. I went to the sideline and laid down for a bit. When my vision cleared up, I got cleaned up and went to work. Fortunately no issues. But there was no internet and I was the only one in my world on Warfarin. These were back in the, “Just tape it up, I’m good!” days. I got my valve in 1990. Teens and early 20’s with no home testing available.

 

[pellicle]

Oh, and @henkac

as you're new here I'm sure how familiar you are with the functions of this board. For starters if you click a members name you can go to their Bio and see important and useful factors about them, for your convenience this is mine and what I've written in my "about" section. What is there can help you to understand the posters.

So what I wanted to add was this: humans are often about seeking control, when in fact control is a delusion. Instead all you can really do is manage. Some things are within your control (your ability to remember to do something and doing that, such as taking your warfarin and measuring your INR). In short all that you can control are your reactions to things and your views of them.

I have enough experience in my life with things which are beyond my control to be fully certain of this. Further I've found that people who pray seem to be those who believe in control and people who are pragmatic are focused on managing what happens.

This will explain my disposition on the advice I've given.

 

[henkac]

Know that you have an excellent medical system and you should educate yourself in what's needed to identify and deal with signs of an IC bleed. This IMO should be done more in sport generally even discounting warfarin and I know people (an of people) who weren't on warfarin and would be in better state (because of sports injuries) now were those things in place.

Agree. And things av progressed in soccer lately about head injuries.

There are many things you can do in the style you play, decission making on the pitch, reduce headers in practice to close to nithing etc.

Still, you won't be able to stay away from it 100% as long as heading is allowed and used in the game.

Concussions are more common than ICB in soccer. Concussions can include bleeding. But most times it's a "shaking of the brain". I know advice is to always do a check at hospital after any hit to the head. Is that what what you guys do always or do you check for more indications of ICB first?

 

[pellicle]

Is that what what you guys do always or do you check for more indications of ICB first?

firstly I think most of the members here are over 60 so I'm pretty sure you're only talking to a few people who are still sportingly active. I ride a motorbike still and an eScooter, and yes its absolutely what I'd do.

Just for reference this is stuff I do most weeks (or daily)



then I got a new scooter




naturally my surgeon says I shouldn't

 

[Superman]

I think most of the members here are over 60 so I'm pretty sure you're only talking to a few people who are still sportingly active.

To be fair, a good portion of our over 60 membership is still sportingly active. Pretty sure quite a few can outclass me distance running. But, the bar is low.

I know advice is to always do a check at hospital after any hit to the head. Is that what what you guys do always or do you check for more indications of ICB first?

I do what my wife tells me to. I’m still very much a bandaid fixes 90% of injuries type of guy. If she’s not worried, I’m not worried. Aside from being blessed to be married to such an incredible person, she also happens to be a pharmacist and works for the biggest hospital system in the area.