Low INR requirement ON-X valve and Skiing, 13 year old

[twinsunnysideup]

My daughter received the on-x valve in the aortic position Sep 2015. Doing great, although she does have PVCs at about 3%.

My question today is regarding skiing. Should we even allow her on greens or just skip it altogether, even though she has a low INR requirement due to the kind of valve she got (between 1.5 and 2.5). Just mentioned that because the risk of bleeding is lower.

Appreciate the feedback and advice.

 

[honeybunny]

My valve is tissue but there are many on this site who report all sorts of strenuous activites while on warfarin, including skiing, hiking, diving, biking, etc. I wouldn't think it would be a concern for your daughter. Hopefully others will check in with their personal experience. Does her doctor have anything to say on the matter?

 

[almost_hectic]

I have an OnX aortic valve and a lower INR. Im not a skier so I dont know how difficult the green downhills are (I think thats what you mean). I guess it depends on how good a skier she is. I dont think she would be in any more danger than the rest of us might. By that I mean in the event she were to break a bone or hit her head, those would be pretty bad, but that chance seems remote. If she has a bad fall she will bruise pretty badly, but I dont think that would be dangerous, just unsightly. I was bit by a dog and even though they dog barely got me I bruised pretty gnarly. After a few weeks I was back to normal. https://www.instagram.com/p/BExMTXhw...=almost_hectic

Its understandable to protect her. Although I would also hesitate to make her feel at all like hew new life will have limitations. I think she should be encouraged to do whatever she feels comfortable doing, just knowing that she might have to be more aware of what could potentially happen. Im sure its not an easy choice to make.

 

[twinsunnysideup]

Thank you.
She is a once per year skier or less but has been doing it since she was about 4 or 5 yo. Greens would be the easiest other than bunny slopes but she would probably be doing blues and some blacks if she wasn't on blood thinners. However as difficulty increases so do the chances of a fall whether your fault or due to someone else's recklessness.
It's indeed a tough decision because i have to make it for her being that she is under age so I'm trying to get as much info and feedback as I can. I have not spoken to the doctor about this specifically.

 

[pellicle]

Hi

well firstly let me address the greens ... its overblown and 90% myth. Take the bull by the horns and self test ... even if you just do it to learn, self test ... then you know. Self test and document, then you learn.

This is the basis of science and the modern world around us: you don't just believe what someone says, you know by verifying what the theory is, and you verify by testing.

Next I'm a cross country skiier (I'm an Australian but back in Finland now waiting for the season to get going, so far its only slush), but I have never found INR to be an issue with my skiing. Nor indeed has any study shown that INR under 3 leads to problems.

My advice to you is to keep the INR about 2.5 (of course it'll be higher or lower occasionally) and test weekly so that you know.

The issues with higher INR are bleeds, and high INR does not cause bleeds it just allows them to continue. Most of the data you'll read is about old people. Old people have less of their elastin still being elastic and so what would be a stretch of the blood vessels on impact for a younger person is a rip on impact and a bleed. This is very well known in trauma work where they even have a rating system to assess the survivability of an impact and guess what ... AGE is the biggest factor in determining the survivability of an impact.

http://www.trauma.org/archive/scores/iss.html


I also ride motorcycles (as well as ski) and take safety very seriously, and the AIS score of impacts and the ISS (Injury Severety Score) is used to determine if you are likely to survivie, and guess what, for any impact it is worse as you get older.


http://www.pitt.edu/~epi2670/severity/severity.pdf

The primary factors of interest include age and co-morbidity. Despite similar injury severity scores, the prognosis for recovery may differ by significantly by age, with older individuals faring worse than younger individuals

So unless your daughter also has a vascular disease then I'd say she'll be fine (given that I usually am) ... but you know ... wear a helmet right?

I've not hit the road (fell off) for some time now on my motorbike (and I like to keep it that way) but I have gone whack on the bicycle (and skiing) and so far being on warfarin AND being over 50 hasn't killed me.

My advice is that the primary worry you have is the unknown ... you've been built up to worry about warfarin and its impacts, largely because people who just don't know tell you things which they hope will guide you ... but the reality is that if you're keeping your INR under 3 and better yet under 2.4 it'll be A-OK

I disencourage you to have your INR lower than 2 as from what I understand it leads to increased risk of clogging the valve with thrombosis formation. That's reversible these days non surgically, but I like to manage myself to avoid hospitals at all (yes I know ... why ride a motorbike ... ;-)

 

[twinsunnysideup]

Thank you. Yes I agree, we always do test to make sure and we have found that it varies. Black in some areas can be green in others...
And yes my concern is what could happen if there is an accident and the fact is skiing is prone to falls. Most of the times fine but there are also many dangerous falls. If I was making a decision for myself it would not be an issue but I am making a decision for another human being, and a teenager at that.
Great point on the age factor!

 

[pellicle]

Hi

Thank you.. but I am making a decision for another human being, and a teenager at that.
Great point on the age factor!

You're welcome.

I just wanted to add, that If I lived my life like my mother wanted I'd never be out of cotton wool ... I was diagnosed at 5 and had my first OHS at 9

Mum was frantic about my condition when I was a little kid, but you know, being a boy I just did it my way anyway. I wasn't reckless (I did know people whe were, who served as examples) but I wasn't a home boy either.

I've not been a parent so I just don't know ... but I have been a son and I reckon that sometimes (from the kids perspective) you just have to let them have some falls.

I survived lots that people said I shouldn't have, while super cautious people I know who were healthy have died of things like cancers.

Life is for living, its important to keep that in mind

 

[twinsunnysideup]

thank you pellicle

 

[Ryan CA]

Hi Twinsunnysideup,

Prior to having my valve replaced (Aortic On-x also) I was seriously considering that I wanted to go with a tissue valve because I mountain bike, motorcycle, hike, shoot..etc. etc.....All due to the fear of anti coagulation therapy. As I got closer to the surgery, I read and read and read some more about the risk of severe bleeding on low level wafarin therapy and soon changed my mind.

I am now almost three years post surgery and have been back to full speed mountain biking and motorcycle riding for 2 years. I monitor at home and I am typically between 1.8 and 2.2 INR and I have not had ONE bruise that I felt was worse than I would have gotten before the medication and the only time I have notice any increase in bleeding was a lower leg cut from a tree branch while mountain biking. It bled down into my sock, but nothing alarming. I tested later that day, and my INR had crept up to a 3.

I maintain my INR and don't even think twice about bleeding issues any more.

One item of protection that made me feel a little better was a new helmet with the "MIPS" technology which is designed to reduce the rotational forces experienced when a helmet impacts a solid surface. POC and GIRO both make ski helmets with the same technology.

Good luck, I hope she hits the slopes worry free.

 

[Ryan CA]

Hi Twinsunnysideup,

Prior to having my valve replaced (Aortic On-x also) I was seriously considering that I wanted to go with a tissue valve because I mountain bike, motorcycle, hike, shoot..etc. etc.....All due to the fear of anti coagulation therapy. As I got closer to the surgery, I read and read and read some more about the risk of severe bleeding on low level wafarin therapy and soon changed my mind.

I am now almost three years post surgery and have been back to full speed mountain biking and motorcycle riding for 2 years. I monitor at home and I am typically between 1.8 and 2.2 INR and I have not had ONE bruise that I felt was worse than I would have gotten before the medication and the only time I have notice any increase in bleeding was a lower leg cut from a tree branch while mountain biking. It bled down into my sock, but nothing alarming. I tested later that day, and my INR had crept up to a 3.

I maintain my INR and don't even think twice about bleeding issues any more.

One item of protection that made me feel a little better was a new helmet with the "MIPS" technology which is designed to reduce the rotational forces experienced when a helmet impacts a solid surface. POC and GIRO both make ski helmets with the same technology.

Good luck, I hope she hits the slopes worry free.

 

[scott.eitman]

I have had an On-X valve for 6+ years. I recently lowered my INR (with permission) to the On-X recommendation of 1.5 -2.0.

Before the lower INR, and now, I am an avid cyclist. I ride 1,500 -- 2,000 miles a year. Yes, I worry about laying at the side of the road, but I take precautions. I typically ride with someone and I wear a Medical ID (even though a first responders will hear the valve an know coumadin) . So I don't descend with great speed out of respect for the coumadin, but I descend with speed.

 

[twinsunnysideup]

Thank you Ryan and Scott great feedback. Really appreciate it. Will definitely look at that helmet, Ryan. My daughter has a helmet, we all do, but we knew she would need an upgrade, so that's great.