My 15 yo daugther - soccer dreams on warfarin

pellicle · Apr 25, 2022

Superman said:
Pretty sure quite a few can outclass me distance running. But, the bar is low.

don't knock yourself mate ... a single bound and all that.

and I see that you're a wise man too ..

I do what my wife tells me to.

kevanndo · Apr 26, 2022

henkac said:
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?

Initially, the idea of my child being on warfarin for the rest of her life terrified me, but she's been on it for eight years now and I can honestly tell you that apart from a few confusing fluctuations in her INR over the years, the only time I ever really think about warfarin is when she takes her daily dose and when I test her weekly at home. Her being on warfarin has never really impacted any of her day-to-day living, nor do I feel that she's been cheated out of any typical childhood/adolescent experiences because of it. Below I've included a previous post of mine to this forum from last year that you might find helpful. Pay particular attention to the final sentence. Also, please feel free to contact me with any additional questions/concerns you might have. It is clearly evident that you are doing all your research, so feel confident that you will make the right decision.

"I'm mom to a sixteen year old daughter who received a mechanical mitral valve when she was nine. I think parents of children receiving mechanical valves are in a different position than adult valve recipients when it comes to making decisions about what constitutes acceptable/unacceptable risks. That being said, my husband and I decided that we wanted our daughter to experience life to the full, the same wish that we had for her four older brothers and sisters, while being mindfully prudent. As a thirteen year old, she ziplined over mountain gorges, whitewater rafted the rapids of a river in the Great Smoky Mountains, rode down the side of a mountain in a mountain coaster, and rolled down a hill inside a giant inflatable ball. The following year, she hiked through a rainforest and accompanied us ATVing up and down the side of a Costa Rican mountain. And she has walked barefoot numerous times on beaches and been thrown violently to the ground by waves on those same beaches! Have we sometimes worried too much about her? Yes, but as parents of five children, I can honestly tell you that some of our greatest worries about our kids have had absolutely nothing to do with our daughter's mechanical heart valve."

henkac · Apr 26, 2022

Superman said:
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 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.

Wisdom right there!

From your experiences then: what would make your wife worried?

My thoughts: you can reduce the risk alot in soccer by decission making and the way you act on the pitch.
But you will never be able to fully remove situations where you head the ball or get milder hits to the head. If every header or mild hit has to lead to her getting of the pitch and visit the hospital, it's ofcourse not a durable option to even give competetive soccer a try. Harder hits (that all players should have checked on the pitch) is something else. Ofcourse she'd need extra attention and always have a check up after a hit like that.

This is one of my big questions I find hard to get a good picture of in terms of risk. The risk will be there and she says she's willing to live/play with that risk. But again, it has to be resonable.

Superman · Apr 26, 2022

If I knew what would make my wife worried, I wouldn’t need to rely on her to tell me when to worry.

henkac · Apr 26, 2022

Superman said:
If I knew what would make my wife worried, I wouldn’t need to rely on her to tell me when to worry.

True

henkac · Apr 26, 2022

kevanndo said:
Initially, the idea of my child being on warfarin for the rest of her life terrified me, but she's been on it for eight years now and I can honestly tell you that apart from a few confusing fluctuations in her INR over the years, the only time I ever really think about warfarin is when she takes her daily dose and when I test her weekly at home. Her being on warfarin has never really impacted any of her day-to-day living, nor do I feel that she's been cheated out of any typical childhood/adolescent experiences because of it. Below I've included a previous post of mine to this forum from last year that you might find helpful. Pay particular attention to the final sentence. Also, please feel free to contact me with any additional questions/concerns you might have. It is clearly evident that you are doing all your research, so feel confident that you will make the right decision.

"I'm mom to a sixteen year old daughter who received a mechanical mitral valve when she was nine. I think parents of children receiving mechanical valves are in a different position than adult valve recipients when it comes to making decisions about what constitutes acceptable/unacceptable risks. That being said, my husband and I decided that we wanted our daughter to experience life to the full, the same wish that we had for her four older brothers and sisters, while being mindfully prudent. As a thirteen year old, she ziplined over mountain gorges, whitewater rafted the rapids of a river in the Great Smoky Mountains, rode down the side of a mountain in a mountain coaster, and rolled down a hill inside a giant inflatable ball. The following year, she hiked through a rainforest and accompanied us ATVing up and down the side of a Costa Rican mountain. And she has walked barefoot numerous times on beaches and been thrown violently to the ground by waves on those same beaches! Have we sometimes worried too much about her? Yes, but as parents of five children, I can honestly tell you that some of our greatest worries about our kids have had absolutely nothing to do with our daughter's mechanical heart valve."

This is very encouraging reading for a parent like me. Thank you for sharing this. I'm sure I'll have questions along this way that you can guide us in.

tom in MO · Apr 26, 2022

She loves soccer or football as the world outside of USA calls it. If she's on warfarin she can play, just no headers. You don't need research on warfarin vs. non-warfarin. Headers in soccer is a risk for all players. If her INR is 2-3 her blood will take 2-3 times longer to coagulate, thus her risk will be 2-3 times a normal player who has an INR of 1.

henkac · Apr 26, 2022

tom in MO said:
If she's on warfarin she can play, just no headers.

If all headers, under all conditions, must be equal to absolute zero, then soccer is out of the picture. You can reduce it a lot but you just can´t make it zero every time you play, the way the game is being played. You can kick around a ball in the garden without ever heading, but you can´t in soccer.

tom in MO said:
You don't need research on warfarin vs. non-warfarin. Headers in soccer is a risk for all players.

Very true. Headers in soccer are a risk (the research do not agree though on the exact risk) and it will be more and more limited. With that said. This is exactly my question. There´s a risk for everyone playing. You can´t take that away from soccer or life. The question is how much bigger it is for some than everyone else and whether that increase in risk is reasonable or not to live the life you want to live.

tom in MO said:
If her INR is 2-3 her blood will take 2-3 times longer to coagulate, thus her risk will be 2-3 times a normal player who has an INR of 1.

If this is true I think I´ve misunderstood and misinterpreted the science and research on Warfarin. Do you mean the absolute risk is equal to the INR? INR 2 =Risk x 2, INR 4 = Risk x 4?

pellicle · Apr 26, 2022

Superman said:
If I knew what would make my wife worried, I wouldn’t need to rely on her to tell me when to worry.

even asking can be fraught

pellicle · Apr 26, 2022

henkac said:
This is one of my big questions I find hard to get a good picture of in terms of risk. The risk will be there and she says she's willing to live/play with that risk. But again, it has to be resonable.

well I tried to address this in my earlier post, so let me have another go.
There is the risk of injury and then the risk of harm. The risk of harm is amplified by inadequate and proper treatment soon. Soon is seldom measured in seconds (unless its an aortic dissection) and the brain can survive relatively unharmed even an IC Bleed with prompt attention to treatment.

This was addressed earlier when you mentioned the proximity of hospitals and cleared up that you were in Sweden (not, say, Botswana or Belarus).

You should start looking into the successes and gold standards in the treatment of strokes, as that's where you will get your "oblique" but related important data. These include (in no particular order):

rapid relieve from pressure caused by a bleed (in extreme cases)
raid reversal of a bleed (by IV administration of Vitamin K)
use of tPA to bust any clots that form
identification of an IC bleed by symptom observation in the first instance (Eg how long it takes to come around from a concussion. These are published) and confirmation by scan if suspected.

As I said from the start, Warfarin does not cause bleeds, it simply exacerbates them. The risk of a bleed from a (say) header injury is the same as the age related risk of that. If the INR is below 2.5 then really the risk of a bleed going on is not that different to the age related group and to be frank all the scar stuff is based on a time when we just didn't know what a patients INR was. They'll determine that within seconds of admission to any hospital in Sweden.

henkac · Apr 26, 2022

pellicle said:
well I tried to address this in my earlier post, so let me have another go.
There is the risk of injury and then the risk of harm. The risk of harm is amplified by inadequate and proper treatment soon. Soon is seldom measured in seconds (unless its an aortic dissection) and the brain can survive relatively unharmed even an IC Bleed with prompt attention to treatment.

This was addressed earlier when you mentioned the proximity of hospitals and cleared up that you were in Sweden (not, say, Botswana or Belarus).

You should start looking into the successes and gold standards in the treatment of strokes, as that's where you will get your "oblique" but related important data. These include (in no particular order):

rapid relieve from pressure caused by a bleed (in extreme cases)

raid reversal of a bleed (by IV administration of Vitamin K)

use of tPA to bust any clots that form

identification of an IC bleed by symptom observation in the first instance (Eg how long it takes to come around from a concussion. These are published) and confirmation by scan if suspected.

As I said from the start, Warfarin does not cause bleeds, it simply exacerbates them. The risk of a bleed from a (say) header injury is the same as the age related risk of that. If the INR is below 2.5 then really the risk of a bleed going on is not that different to the age related group and to be frank all the scar stuff is based on a time when we just didn't know what a patients INR was. They'll determine that within seconds of admission to any hospital in Sweden.

What you say is pretty much what I "see" too when I study these topics. I´m besides, reading research about warfarin, reading about risks for IC in "normal population", heading statistics, stroke numbers, what other factors are effecting bleeding risks etc etc. And what I find, very much relates to lots of the things you say. But I´m afraid I´m just that crazzy dad, blind to the obvious (for others) all to high risks no matter your age, over all fitness, INR-controll, modern hospital routines etc. Before I found this forum I felt like I was the only person in this world not seeing the unreasonable risks to even have a thought of letting your child play soccer (or any other activity a like) on Warfarin. I see the risks. They terrify me sometimes...but I end up coming back to "but are the risk really that unreasonable compared to other risks we´re letting our kids being exposed to to live a full life"?

I´m not expecting any of you to answer that question for me but you have no idea (or maybe you actually do) how helpful it is to read all your engaging answers. Not only to justify my thinking but for perspective, encouragement and also wisdom to re-think.

pellicle · Apr 26, 2022

henkac said:
I´m not expecting any of you to answer that question for me but

Understood, but all we can do is share and you have to come to your own conclusions.

I would suggest that it will only be in the duration of time that the rational will prevail over the emotional responses.

I'm not a parent, so I don't know how you feel.

pellicle · Apr 26, 2022

Moi

henkac said:
But I´m afraid I´m just that crazzy dad, blind to the obvious ...

I'm trying to grapple with what may be a misinterpretation (it didn't fit and I didn't understand how to understand it) {koska selvästi sinua ei olle hullu} : does your (consistent) use of crazy mean you are saying something like "unrealistically elevated over-concern for your daughter" , something which you feel is not rational but you feel it overwhelmingly??

Also I wanted to make a point about injury and harm.
Surgery is an injury, which is why they now talk of "surgical wounds", the body heals itself, we just help that along.
This is an important point because that injury is done with specific intent (and inevitably side effects and possibly harm), but despite that we heal from that injury (in the main) quite well.

As a cyclist I've been hit by cars many times. I've suffered damage to vertebrae, broken bones, torn ligaments, concussions. But I healed (with some assistance from medicine). Into my late 50's I'm still doing more than some of my age group.

So my point is that injury is associated with harm but its not a given. So a soccer injury may yield no long term harm if its treated promptly and appropriately.

Indeed an entire generation of "thrill seekers" do things which 30 years ago would be considered "pure bonkers" because they know they can get treatment and minimise harm. (Suggests watching Duudsonit )

tom in MO · Apr 28, 2022

henkac said:
If all headers, under all conditions, must be equal to absolute zero, then soccer is out of the picture. You can reduce it a lot but you just can´t make it zero every time you play, the way the game is being played. You can kick around a ball in the garden without ever heading, but you can´t in soccer.

Very true. Headers in soccer are a risk (the research do not agree though on the exact risk) and it will be more and more limited. With that said. This is exactly my question. There´s a risk for everyone playing. You can´t take that away from soccer or life. The question is how much bigger it is for some than everyone else and whether that increase in risk is reasonable or not to live the life you want to live.

If this is true I think I´ve misunderstood and misinterpreted the science and research on Warfarin. Do you mean the absolute risk is equal to the INR? INR 2 =Risk x 2, INR 4 = Risk x 4?

Risk is a guess, never an "absolute." It is never "science" alone. Multiple factors enter into a risk assessment, some can be evidenced based, others are "judgement". The two most common factors are "negative outcome" vs. "probability of occurrence." Your INR is the multiple to apply to a bleeding event to know when your blood will coagulate. If your shaving cut takes 3min to stop bleeding, with an INR of 3 it will take 3x3min=9 minutes to stop bleeding.

To me, based upon current assessments of risks on warfarin, internal bleeding is more dangerous than external and in internal bleeding a brain bleed is the biggest risk. In soccer that would be a header causing bleeding in the brain or a head injury. An expert in soccer injuries might know differently. But since headers are bad by design, it may be good to avoid them. For any significant risk, it should be mitigated. Instead of mitigating it by refraining from headers, maybe helmets can protect your child's brain.

carolinemc · Apr 28, 2022

tom in MO said:
Risk is a guess, never an "absolute." It is never "science" alone. Multiple factors enter into a risk assessment, some can be evidenced based, others are "judgement". The two most common factors are "negative outcome" vs. "probability of occurrence." Your INR is the multiple to apply to a bleeding event to know when your blood will coagulate. If your shaving cut takes 3min to stop bleeding, with an INR of 3 it will take 3x3min=9 minutes to stop bleeding.

To me, based upon current assessments of risks on warfarin, internal bleeding is more dangerous than external and in internal bleeding a brain bleed is the biggest risk. In soccer that would be a header causing bleeding in the brain or a head injury. An expert in soccer injuries might know differently. But since headers are bad by design, it may be good to avoid them. For any significant risk, it should be mitigated. Instead of mitigating it by refraining from headers, maybe helmets can protect your child's brain.

What it is now that more teens are getting into the rough sports and it is hard to see what the real risks are. Many pro athletes do take warfarin and other blood thinners and we do not know how they are doing.

henkac · Apr 28, 2022

carolinemc said:
What it is now that more teens are getting into the rough sports and it is hard to see what the real risks are. Many pro athletes do take warfarin and other blood thinners and we do not know how they are doing.

I´ve found some pro athletes training on warfarin and also competing/games on NOACS but not yet any player in contact sports playing fully on Warfarin. Anyone that knows of someone doing this?

henkac · Apr 28, 2022

pellicle said:
Moi

I'm trying to grapple with what may be a misinterpretation (it didn't fit and I didn't understand how to understand it) {koska selvästi sinua ei olle hullu} : does your (consistent) use of crazy mean you are saying something like "unrealistically elevated over-concern for your daughter" , something which you feel is not rational but you feel it overwhelmingly??

Also I wanted to make a point about injury and harm.
Surgery is an injury, which is why they now talk of "surgical wounds", the body heals itself, we just help that along.
This is an important point because that injury is done with specific intent (and inevitably side effects and possibly harm), but despite that we heal from that injury (in the main) quite well.

As a cyclist I've been hit by cars many times. I've suffered damage to vertebrae, broken bones, torn ligaments, concussions. But I healed (with some assistance from medicine). Into my late 50's I'm still doing more than some of my age group.

So my point is that injury is associated with harm but its not a given. So a soccer injury may yield no long term harm if its treated promptly and appropriately.

Indeed an entire generation of "thrill seekers" do things which 30 years ago would be considered "pure bonkers" because they know they can get treatment and minimise harm. (Suggests watching Duudsonit )

You make me realize I over-use that crazzy-term. Probably due to lack of vocabulary

And shouldnåt be my main focus here. Most people would probably say both me and my daughter is very rational and "low emotional" about this so it´s probably meusing wrong words in written english.

How did your torn ligaments and broken bone injuries effect by Warfarin? If you did notice any abnormal effect?

pellicle · Apr 28, 2022

henkac said:
How did your torn ligaments and broken bone injuries effect by Warfarin? If you did notice any abnormal effect?

all of those happened before I was on warfarin, sorry that wasn't clear. I wasn't on warfarin until I was 48.

Injuries since warfarin have just been usual minor cuts, strained muscles and whatnot (as hard as it is to believe I must have learned something between 20 and 48 ;-)

Everything since warfarin has been pretty much as it was before. For instance, I've gone to the same dentist for nearly 30 years now. When I have my regular scale and clean he often remarks how little my gums bleed and says "if I didn't know you were on warfarin I would never suspect it"

This reminds me to mention an important point: proper periodic dental cleaning is a very important aspect of life after valve operations. High subgingival plaque levels will increase your risk of getting endocarditis. Its advisiable to take a dose of amoxicillin (or other broad spectrum antibiotic) as a prophylactic cover.

This is not restricted to mechanical valves but any valve replacement surgery (including my homograft from back in my 20's

Some readings

https://www.sciencedirect.com/science/article/pii/S0019483216301092

Infective endocarditis and oral health—a Narrative Review

Infective endocarditis is a rare but usually severe and often fatal inflammatory disease affecting the endocardial surface, native and prosthetic valves or cardiac devices. Besides various staphylococcus species, oral viridans streptococci are known to ...

www.ncbi.nlm.nih.gov

and best for last:

Microbiology of Odontogenic Bacteremia: beyond Endocarditis

Summary: The human gingival niche is a unique microbial habitat. In this habitat, biofilm organisms exist in harmony, attached to either enamel or cemental surfaces of the tooth as well as to the crevicular epithelium, subjacent to a rich vascular plexus ...

www.ncbi.nlm.nih.gov

Summary: The human gingival niche is a unique microbial habitat. In this habitat, biofilm organisms exist in harmony, attached to either enamel or cemental surfaces of the tooth as well as to the crevicular epithelium, subjacent to a rich vascular plexus underneath. Due to this extraordinary anatomical juxtaposition, plaque biofilm bacteria have a ready portal of ingress into the systemic circulation in both health and disease. Yet the frequency, magnitude, and etiology of bacteremias due to oral origin and the consequent end organ infections are not clear and have not recently been evaluated. In this comprehensive review, we address the available literature on triggering events, incidence, and diversity of odontogenic bacteremias. The nature of the infective agents and end organ infections (other than endocarditis) is also described, with an emphasis on the challenge of establishing the link between odontogenic infections and related systemic, focal infections.

Best wishes

Superman · Apr 28, 2022

henkac said:
You make me realize I over-use that crazzy-term. Probably due to lack of vocabulary And shouldnåt be my main focus here. Most people would probably say both me and my daughter is very rational and "low emotional" about this so it´s probably meusing wrong words in written english.

How did your torn ligaments and broken bone injuries effect by Warfarin? If you did notice any abnormal effect?

Hairline fracture of my elbow. Playing basketball. Took a couple weeks to realize I should have an x-ray done. No bruising. I started to notice a sound when extending my arm as well as loss of mobility. Normal treatment. A cast for a few weeks. No unusual bruising.

Bike chain ran up my shin and left teeth marks from the cogs in a mountain biking mishap. No unusual bleeding. Treated with peroxide. Went camping with some buddies that same weekend. Never sought any special medical treatment for it. It healed.

Broken thumb on a bike accident. This time I was older and one of my kids cut me off. I bailed to avoid hitting them. Just a hand brace. No unusual bruising or lengthy healing time.

Dropped a large cabinet on my foot. Foot turned many beautiful colors. I have a permanent scar on it. But it healed as well.

I haven’t had any serious head injuries that I recall. I did have to manage warfarin through a second open heart surgery. As well as through the removal of my gallbladder and appendix. Typically this meant going off warfarin and taking shots of Lovenox until I was safe to restart warfarin.

But the lack of head injury stories doesn’t answer your questions and if it wasnt an issue for me, it would just be a anecdotal evidence anyway and wouldn't guarantee your daughter’s safety.