Confused about advice

[Emmapenny]

My son is 15 and had his surgery for mechanical valve 6 months ago and is on warfarin.

This whole time he has been asking his cardiologist when he can play football.

Initially pre op he was told 6 weeks……. Obviously this was ridiculous and I’ve no idea why he was told that in the first place.

When he was discharged they made a point on his letter his cardiologist had approved football.

Then in November when he asked again when he can play football his cardiologist said to him he wants him to get back to everything he was doing before his operation but he wanted him to wait till after Christmas.

So we had his follow up in January and my son is feeling good and raring to go and a complete change of tune by the same cardiologist. He’s told him he is concerned about him playing. He can play but he will have to review it as we go………

Now I received his letter today summarising the appointment and he’s said he’s really concerned about him playing football and he will need to discuss with his colleagues what is best.

The colleagues he wants to discuss with is the same anti coagulation team that told me that he could basically bleed to death if he fell over or cut himself shaving so I already know their stance on it.

I know how the story goes as in they have minimal real life experience of managing warfarin but I’m so frustrated and confused about the back tracking. And I’m so disappointed at the fact that the cardiologist who has known us for 6 or 7 years has been so flaky and is now hiding behind his colleagues.

I don’t know what to think and now I’m wondering if he should just give up football and learn to accept it.

If he was wanting to be a professional footballer then obviously I know that’s never going to happen but to play low level football is so different.

I know he can learn to play his game with minimal headers and this is solid compromise. It still doesn’t make sense to me though.

If he can ride a bike and potentially fall off and bang his head (even with a helmet) that is a heavier impact than heading a football. But they don’t have an issue with riding a bike.

One of the nurses told me the NHS advise people not to smoke but they still smoke ….. Does that mean it’s ok ?

Please can you wise people help me again make sense of this.

 

[jeffp]

A head injury and possible bleed is a significant risk, with or without warfarin. The warfarin is not negotiable. As should be proper head gear while riding a bicycle. Conking your noggin on the street from a cycle accident can be serious for anyone.
As to him playing soccer (what we yanks call football), pro play is probably out. It can get as rough as our American football. For recreational play, the body blows and falls aren’t likely to be long term problem causers, but head injuries are. Trying to get a 15 y/o to wear a helmet while his teammates don’t is going to be a tough go.
Life entails risks. Just keep pushing the cardiologist for a decision/recommendation. Don’t be surprised though if he tells him to take up stamp collecting (not that there’s anything wrong with that as a hobby).

 

[Emmapenny]

A head injury and possible bleed is a significant risk, with or without warfarin. The warfarin is not negotiable. As should be proper head gear while riding a bicycle. Conking your noggin on the street from a cycle accident can be serious for anyone.
As to him playing soccer (what we yanks call football), pro play is probably out. It can get as rough as our American football. For recreational play, the body blows and falls aren’t likely to be long term problem causers, but head injuries are. Trying to get a 15 y/o to wear a helmet while his teammates don’t is going to be a tough go.
Life entails risks. Just keep pushing the cardiologist for a decision/recommendation. Don’t be surprised though if he tells him to take up stamp collecting (not that there’s anything wrong with that as a hobby).

Thanks for your message.

Agree there is nothing wrong with stamp collecting if you enjoy it!

Also agree life itself is risky and we judge what risks we deem are worth taking.

I suppose part of my frustration lies in the lack of research / knowledge of young people on warfarin. But it surprises me the experts we deal with can’t seem to see past this and advise based on a usually much older age group. I thought our cardiologist was different and got it - but seems he has reverted to type.

My son had an INR or 6.9 recently as he was in hospital on antibiotics and everyone that came in to take blood or put cannulas in told us he was going to bruise badly or bleed heavily when they did it but he didn’t have one bruise. Nothing. His arms were not marked in anyway and he didn’t bleed.

Obviously if his INR is out of range like that there is no way he’d be out and about waking never mind sport but the point is from what I understand younger people don’t necessarily have the same bruising and bleeding that you might have as you get older. So should they be treated the same as an older person?

 

[Woodcutter]

I broke a leg playing soccer in a coed league at age 30. I had a daughter break a leg playing highschool soccer. I had another daughter (temporarily) blinded in one eye after taking a hard shot to the head in a competitive youth soccer league. In the aforementioned coed league, I recall a very beautiful teammate deciding to take one season off because she did not want her legs all bruised up for her upcoming wedding. None of these anecdotes were about warfarin or heart valves. Just my own confirmation(s) about it being a contact sport.

I wasn't on warfarin until the following decade and my mechanical heart valve did not arrive until age 50. I have not played soccer in years. Not because of warfarin but because, while I can still run a long way, I am relatively slow and really slow getting started!

I mentioned all of the above for context around my opinion. If I was interested in playing soccer, I would do it. I do not remember the last time (if ever) I asked a Dr. what I can or cannot do. (I won't recommend that approach, but it is me!). Knowing what I know now and have experienced, if I had a child that wanted to do something like soccer on warfarin, I would allow it. I'd certainly provide some 'coaching' with regards to injury/damage. I am the sort that wants the kids to ride the bike over the jump if they have fun . . . . even if cuts and bruises are involved.

 

[Emmapenny]

I broke a leg playing soccer in a coed league at age 30. I had a daughter break a leg playing highschool soccer. I had another daughter (temporarily) blinded in one eye after taking a hard shot to the head in a competitive youth soccer league. In the aforementioned coed league, I recall a very beautiful teammate deciding to take one season off because she did not want her legs all bruised up for her upcoming wedding. None of these anecdotes were about warfarin or heart valves. Just my own confirmation(s) about it being a contact sport.

I wasn't on warfarin until the following decade and my mechanical heart valve did not arrive until age 50. I have not played soccer in years. Not because of warfarin but because, while I can still run a long way, I am relatively slow and really slow getting started!

I mentioned all of the above for context around my opinion. If I was interested in playing soccer, I would do it. I do not remember the last time (if ever) I asked a Dr. what I can or cannot do. (I won't recommend that approach, but it is me!). Knowing what I know now and have experienced, if I had a child that wanted to do something like soccer on warfarin, I would allow it. I'd certainly provide some 'coaching' with regards to injury/damage. I am the sort that wants the kids to ride the bike over the jump if they have fun . . . . even if cuts and bruises are involved.

Thanks for your reply.

That’s how I feel too. I want him to live his life and have fun. If anything this whole process of OHS has proved the importance of this.

But it can be hard to rationalise it when the people you’re supposed to look up to for their knowledge and expertise say things that don’t really make sense..

 

[pellicle]

Hi Emma

I suspect that you are not interpreting this message from the nurse as she intended

One of the nurses told me the NHS advise people not to smoke but they still smoke ….. Does that mean it’s ok ?

She's saying people do what they want. Just look at how many people don't keep up their medication (a far more stupid action IMO)

I second these views

Life entails risks.

risks are not certainties ... I notice that some people are risk tolerant and others risk averse.

mentioned all of the above for context around my opinion. If I was interested in playing soccer, I would do it. I do not remember the last time (if ever) I asked a Dr. what I can or cannot do

I can't say how many time my surgeon suggested to me that I should stop riding motorcycles because they are dangerous. However I've had a motorcyce since I was 15, owned one in every country I've live in except Finland, I've got one (well two) still.

I can't understand how you feel because I've never been a parent and I'm not you. I can however put myself in the position of younger son who wanted to do stuff and had a mother who was cautious.

I did what every teenage male would do ... resisted and pushed boundaries.

HTH

 

[Emmapenny]

Hi Emma

I suspect that you are not interpreting this message from the nurse as she intended

She's saying people do what they want. Just look at how many people don't keep up their medication (a far more stupid action IMO)

I second these views

risks are not certainties ... I notice that some people are risk tolerant and others risk averse.


I can't say how many time my surgeon suggested to me that I should stop riding motorcycles because they are dangerous. However I've had a motorcyce since I was 15, owned one in every country I've live in except Finland, I've got one (well two) still.

I can't understand how you feel because I've never been a parent and I'm not you. I can however put myself in the position of younger son who wanted to do stuff and had a mother who was cautious.

I did what every teenage male would do ... resisted and pushed boundaries.

HTH

I try really hard not to be an overly cautious mum - I really don’t want to be. But its a fine line most of the time - and not just with my son who’s on warfarin!

We’re a pretty sensible family we understand risk and we work with it every day.

I guess we will have to agree to disagree on certain things they say and when they’re making me feel irresponsible for not making him stop his football - that’s ok it doesn’t mean it’s true.

Thanks for my mini therapy session!

I knew you guys would help me work it out in my mind.

 

[pellicle]

I try really hard not to be an overly cautious mum - I really don’t want to be. But its a fine line most of the time - and not just with my son who’s on warfarin!

being aware of it is half the battle.

Don't get me wrong, I love my mum and am very grateful for all she sacrificed in her life for me. I recognise that but this does not mean we didn't have any conflict. None of us are perfect and we make mistakes ... so I guess I'm saying "focus on the good bits"

 

[Superman]

In the US, a medical team would never advise someone to play a contact sport while on Warfarin. Could you imagine the liability? Don’t know what the liability rules are like in countries not so litigious as my own, but, “My child had a brain hemorrhage from a header and his cardiologist said soccer was okay” seems like a slam dunk lawsuit.

Even being on warfarin I wouldn’t say for sure that it’s okay. At best I can say what I do and have done. But anything like that is proceed at your own risk.

I’ve played a fair bit of sport while on warfarin. All recreational since I wasn’t allowed to play growing up. I’ve had minor fractures, mountain bike accidents, etc and I’m here to tell about them. But it’s still a very individual comfort level of risk acceptance. True even with perfectly healthy folks. Ours is admittedly a bit higher risk.

 

[vitdoc]

Hopefully being on warfarin will not be a major issue for your son. It hasn't been for me having been using it for about 40 years starting at age 34. I had a tissue aortic valve at age 29 that failed in 5 years.
However I have avoided a few things that exceeded my comfort level. I don't mountain bike due to the not rare falls that occur. But I played moderate level basketball for years and I have bicycled all over the world for years and have downhill skied for many years.
Fortunately except for a fall off a road bike at relatively high speed I have not had any issues with bleeding. On the bike fall I injured my leg and bled into my upper leg a lot of blood which took about 2 months to clear. So while on warfarin a bruise can be significantly worse than without warfarin.
I have fallen skiing and a few times hit my head without problems but that is a worry for anyone even off warfarin.
Soccer - European football certainly is a contact sport and one gets kicked in the legs and may fall and one heads the ball. So probably not the ideal activity for someone on anticoagulation. Rugby not a great idea either.
But there are many other activities that have lesser risk and should be entertained by your son. The worst thing at his age would be to feel too different from his friends. I have always felt essentially completely normal with the warfarin.
As mentioned by Superman

But it’s still a very individual comfort level of risk acceptance. True even with perfectly healthy folks. Ours is admittedly a bit higher risk.

Good luck.

 

[carolinemc]

My son is 15 and had his surgery for mechanical valve 6 months ago and is on warfarin.

This whole time he has been asking his cardiologist when he can play football.

Initially pre op he was told 6 weeks……. Obviously this was ridiculous and I’ve no idea why he was told that in the first place.

When he was discharged they made a point on his letter his cardiologist had approved football.

Then in November when he asked again when he can play football his cardiologist said to him he wants him to get back to everything he was doing before his operation but he wanted him to wait till after Christmas.

So we had his follow up in January and my son is feeling good and raring to go and a complete change of tune by the same cardiologist. He’s told him he is concerned about him playing. He can play but he will have to review it as we go………

Now I received his letter today summarising the appointment and he’s said he’s really concerned about him playing football and he will need to discuss with his colleagues what is best.

The colleagues he wants to discuss with is the same anti coagulation team that told me that he could basically bleed to death if he fell over or cut himself shaving so I already know their stance on it.

I know how the story goes as in they have minimal real life experience of managing warfarin but I’m so frustrated and confused about the back tracking. And I’m so disappointed at the fact that the cardiologist who has known us for 6 or 7 years has been so flaky and is now hiding behind his colleagues.

I don’t know what to think and now I’m wondering if he should just give up football and learn to accept it.

If he was wanting to be a professional footballer then obviously I know that’s never going to happen but to play low level football is so different.

I know he can learn to play his game with minimal headers and this is solid compromise. It still doesn’t make sense to me though.

If he can ride a bike and potentially fall off and bang his head (even with a helmet) that is a heavier impact than heading a football. But they don’t have an issue with riding a bike.

One of the nurses told me the NHS advise people not to smoke but they still smoke ….. Does that mean it’s ok ?

Please can you wise people help me again make sense of this.

Many here lead very active lives and many pro athletes are on warfarin also. You are a mother and it is understandable that you might be confused for you have other professionals on two sides telling you different things. The main thing is that he stay on the warfarin due to the artificial valve. But you find many here do not worry so much about the potential bleeds, as it ai more important to be active in their lives. So sorry you feel your child's cardio is hiding and using other colleagues. It is other people that can do the blood work and dose your son's warfarin, cardio doctors do not mess with that part unless there is a danger to the patient. I have been dealing with warfarin since I was 36, had bypass replacement in 2001.
You have a right to worry about his chances for injury and bleeding, but kids will be kids and they have to deal with heart stuff when they become adults and have to do on their own. Your son will learn as he grows up ho to do for this heart issue. You do what you can in the meantime, but do not keep him in a gilded cage. His cardio cares, other doctors care and the lab people and the nursing staff. But you do have to worry as a parent.
Perhaps the doctor can connect you to a support group, for many hospitals have support groups for parents of heart patients as well as for the child heart patients. I hope your doctor can direct you to a support group. For it is a lot to learn for what will be for the rest of your child's life.
I will hope you can destress and let him be a child, for childhood does not last very long. Have a nice day, from one who was born with a defective aortic valve with murmur. Had repair on aortic valve at 8 years old and replaced at 36. Your child has a long life to deal with this. he will be fine.

 

[tom in MO]

You say that "My son had an INR or 6.9 recently as he was in hospital on antibiotics " That's pretty extremely out of range. I've been on antibiotics but never been over 3.5. Maybe the cardio teams advice is based upon his observed INR history. Is he within range most of the time or does he often spike above 3? I know nothing about UK's health care system, but in the US you could always go to someone different.

I have noticed that the NHS is very conservative when it comes to things that could lead to more cost, their INR range is higher than in the US. Stroke avoidance is more important due to the cost of a stroke. Maybe playing football with a high INR is something they want to avoid so they don't incur medical costs.

 

[vitdoc]

Given that the physicians in the UK are employees of the NHS I truly doubt their medical advice is based on any thought of saving money for the NHS. This goes sort of into conspiracy theories.

The high INR could have been associated with the antibiotics. Different drugs are metabolized differently. Some are excreted primarily via the kidney and stool some are metabolized by the liver and many somewhat in both ways. So in the liver metabolized antibiotics situation there is potential for other liver metabolized drugs to have altered effects due to alterations in how the liver metabolizes them. Or maybe your son wasn’t eating normally and his input of Vit k was low.

I don’t think there is a course physicians are exposed to that gives them detailed information about what sports are appropriate for patients on warfarin. At this point common sense. Most sport injuries on warfarin probably won’t be fatal unless the head is involved. But the bruising can be quite significant.
So in my opinion save your head first and decide on what you feel comfortable with. As I have mentioned for 40 years I have done just about anything I wanted other than mountain biking and I took some risks with my head particularly in skiing. But 20 years ago I started wearing a helmet to ski which I think everyone should do anyway.

Again emphasize the myriad of things your son can do and the very few things that may be a bit risky.

 

[Emmapenny]

You say that "My son had an INR or 6.9 recently as he was in hospital on antibiotics " That's pretty extremely out of range. I've been on antibiotics but never been over 3.5. Maybe the cardio teams advice is based upon his observed INR history. Is he within range most of the time or does he often spike above 3? I know nothing about UK's health care system, but in the US you could always go to someone different.

I have noticed that the NHS is very conservative when it comes to things that could lead to more cost, their INR range is higher than in the US. Stroke avoidance is more important due to the cost of a stroke. Maybe playing football with a high INR is something they want to avoid so they don't incur medical costs.

He doesn’t really have INR spikes - generally he’s pretty steady. But his team like him to be slightly over 3 despite his range being 2-3. Which I have spoken to them about before and it fell on deaf ears. He was on IV antibiotics when he went to 6.9 - I don’t know if that made the difference compared to oral antibiotics. I don’t know Because it’s his first experience of antibiotics so I’ve nothing to compare it to. But he went from 3.2 to 4.5 the next day then 6.9 the following day when he started them. They didn’t adjust his warfarin dose until he hit 6.9 when they then skipped a dose and he was back down to 4.4 the next day and then in range the following day.

I know the warfarin team err on the side of caution keeping his level higher to avoid a stroke - they are open about this. But I don’t believe it is money related - in my experience hospital teams are not money minded. They are happy and won’t generally adjust his dose until he gets to 3.9. This was fine while he was recovering and not doing too much but now he’s more active it doesn’t sit well with me. I want them to aim for 2.5 - not be happy as long as he’s under 4.

But I understand that side of things and I’m working on managing that with them.

My confusion lies with flaky advice to a young person based on information that mainly involves much much older people and how their bodies react.

 

[Emmapenny]

Thank you everyone for your comments - I really find it helpful to hear them all.

I appreciate no one is going to say everything will be ok because of course no one knows this, on warfarin or not. That’s why your opinions are so helpful to me in sorting out my own thoughts.

For those that have been on warfarin since they were a teenager - or very young adult- have you noticed a difference in how your body reacts as you’ve got older?

For example :
My mum aged 76 bangs her shin on the table and ends up with a nice big bruise going purple , yellow , blue etc etc and lasts for a week or so.

Me aged 48 bangs my shin on the table and gets a bit of a bruise - gone in a few days.

My other son age 20 bangs his shin on the table and nothing happens.

None of us on warfarin but we will bruise differently based on our age.

In my mind that makes a big difference to assessing risk when you’re on warfarin. But I don’t know if that’s too simple a way to look at it.

For anyone who’s interested!!! For now providing he’s within range that week he’ll be playing football with no headers. We shall see how his body reacts when he gets his first bruise from a tackle and take it from there.

I’m also going to write to the hospital and see if we can start off some small studies based purely on children - no idea if this will be possible but I figured I could try. He’s under Great Ormond Street , supposedly the leading childrens hospital in the UK. I’m hoping they will get behind this idea but we shall see!

If anyone is still reading and has any advice on this - it’s all welcome.

 

[pellicle]

Hi

well I don't meet your initial stated criteria, but I do meet this bit: "If anyone is still reading and has any advice on this - it’s all welcome."

Me aged 48 bangs my shin on the table and gets a bit of a bruise - gone in a few days.

My other son age 20 bangs his shin on the table and nothing happens.

what about the one on warfarin?

I want to point out at this point (something which you probably know) that warfarin does not cause bleeds. A bruise is a bleed under the skin, caused (as per your example) by trauma that doesn't break the skin but does rupture the blood vessels. To my thinking this is directly related to the elasticity of the blood vessels.

I recall in my 20's working with my dad who was never on blood thinners when he was about my age now. I recall he used to bleed easily from any abrasions (particularly to the forearms), as yet I don't suffer this (although I am on warfarin).

basically each of us (even though related) are sufficiently different that it makes the question hard to answer as a "generalised abstract question"

You ask:

For those that have been on warfarin since they were a teenager - or very young adult- have you noticed a difference in how your body reacts as you’ve got older?

well my view is that this would only be Superman in this post:
https://www.valvereplacement.org/threads/confused-about-advice.888951/post-922392
which I'm sure you read. Its very like his style, succinct and pithy.

Personally I think that's the closest you're going to get from a group who's median age is probably >50 and (based on my readings) almost nobody here had their first OHS before 25.

Basically my vote is "suck it and see"

 

[carolinemc]

Given that the physicians in the UK are employees of the NHS I truly doubt their medical advice is based on any thought of saving money for the NHS. This goes sort of into conspiracy theories.

The high INR could have been associated with the antibiotics. Different drugs are metabolized differently. Some are excreted primarily via the kidney and stool some are metabolized by the liver and many somewhat in both ways. So in the liver metabolized antibiotics situation there is potential for other liver metabolized drugs to have altered effects due to alterations in how the liver metabolizes them. Or maybe your son wasn’t eating normally and his input of Vit k was low.

I don’t think there is a course physicians are exposed to that gives them detailed information about what sports are appropriate for patients on warfarin. At this point common sense. Most sport injuries on warfarin probably won’t be fatal unless the head is involved. But the bruising can be quite significant.
So in my opinion save your head first and decide on what you feel comfortable with. As I have mentioned for 40 years I have done just about anything I wanted other than mountain biking and I took some risks with my head particularly in skiing. But 20 years ago a started wearing a helmet to ski which I think everyone should do anyway.

Again emphasize the myriad of things your son can do and the very few things that may be a bit risky.

For some exercise can raise the INR a bit. I know when I start moving more, my INR increases. And when I have allergies and use Antihistamine, it will rise.

 

[carolinemc]

He doesn’t really have INR spikes - generally he’s pretty steady. But his team like him to be slightly over 3 despite his range being 2-3. Which I have spoken to them about before and it fell on deaf ears. He was on IV antibiotics when he went to 6.9 - I don’t know if that made the difference compared to oral antibiotics. I don’t know Because it’s his first experience of antibiotics so I’ve nothing to compare it to. But he went from 3.2 to 4.5 the next day then 6.9 the following day when he started them. They didn’t adjust his warfarin dose until he hit 6.9 when they then skipped a dose and he was back down to 4.4 the next day and then in range the following day.

I know the warfarin team err on the side of caution keeping his level higher to avoid a stroke - they are open about this. But I don’t believe it is money related - in my experience hospital teams are not money minded. They are happy and won’t generally adjust his dose until he gets to 3.9. This was fine while he was recovering and not doing too much but now he’s more active it doesn’t sit well with me. I want them to aim for 2.5 - not be happy as long as he’s under 4.

But I understand that side of things and I’m working on managing that with them.

My confusion lies with flaky advice to a young person based on information that mainly involves much much older people and how their bodies react.

Antibiotics make me go to 4.0, but if rechecked in a week or two after I am through with them, I get into normal ranges. And it is not due to being an older person, it is metabolism . Not age.

 

[Emmapenny]

Antibiotics make me go to 4.0, but if rechecked in a week or two after I am through with them, I get into normal ranges. And it is not due to being an older person, it is metabolism . Not age.

Yes I get the metabolism side of things for differences in INR - it’s only the bruising /bleeding outcomes I am questioning re the age.

 

[Emmapenny]

For some exercise can raise the INR a bit. I know when I start moving more, my INR increases. And when I have allergies and use Antihistamine, it will rise.

Interesting as he does suffer really bad hayfever and they have assured me that hayfever or anti histamines won’t affect his INR…..I guess we will have to see come summer time how he reacts.