Coumadin info lifestyle changes bleeding disorder

[skimomck]

Our son needs a new pulmonary valve soon, we hare having a cath done next week. He has pulmonary stenosis in his homograft from his Ross. We need to know what lifestyle changes this would involve. Teddy is an avid skier (freestlyer), sailor, climber, mountain biker, etc. We haven't made a valve choice at this time but we are gathering info, thanks for any help you can give.

 

[Granbonny]

Cindy

Cindy

All of Teddy's sports sound like the ones ..if he takes coumadin..he would need to wear a hard helmet...for the hard falls, ect...I have been on coumadin for over 2 years. No problems..I have a home tester for my INR to keep it in range..Quite a few of our members have them too. Helps to know if your blood is to thin (bleeds) or too thick ..strokes..I am coming up 3,000 posts on this site and cannot remember anyone having a serious injury on coumadin...If you choose to go mech..No more surgeries for him....and if you can get him a home tester (see QAS) on the forum....He should be able to manage his coumadin well at home or college and not have to go to a coumadin clinic once a month ..I'm sorry he has to make this choice so young...Best of luck. Bonnie

 

[Johnny Stephens]

Hi Cindy, valve choice is extremely individual - what works for me or someone else may not be the best choice for your son. What we can do is relate our personal experience. You're also at that "chicken or the egg" spot, in that lifestyle may factor into valve choice and vice versa.

For a 2nd surgery, and particularly at such a young age, I suspect you'll hear that mechanical is the way to go. This may be true, but please understand you'll hear both extremes of the argument. Mechanicals offer extreme durability of the valve itself, but there are other issues to factor in, like how disciplined your son will be in taking Coumadin / warfarin EVERY DAY; and lifelong exposure to the inconveniences and increased bleeding risk. The bleeding risk is where I see some tradeoffs for your son - if he's injured severely it may be problematic.

There actually have been some (very few) incidents with Coumadin among members here, but I'll let them come forward if they wish to relate their own experiences.

That said, I have 2 mechanicals, but my medical situation dictated that course. Due to radiation exposure, heavy scarring meant that my first surgery was as challenging for the surgeon as most people's 2nd or 3rd. They are more challenging technically each time. Coumadin hasn't been too bad for me to manage - I'm old enough that I've outgrown most of my risky activities. My diuretics have caused me way more pain, frustration, and physical side effects than Coumadin.

But that's me.

There is a really good thread laying around about valve choice started by Peter Easton.

Best of luck to you and your son

 

[Gemma]

Hi Cindy,
My boyfriend Jim had his aortic valve replaced with a mechanical one last December and has been on warfarin (coumadin) for 8 months now.

My first question would be whether it is actually possible to have a mechanical pulmonary valve. I have a feeling it might not be, in which case your son's decision has kind of been made for him. Of course I'm quite possibly wrong .

Jim is into mountain biking, motorcycling (on and off road) and is a precision engineer as well as building his own motorbikes and cars from scratch - all these things could potentially lead to bleeding problems. But he felt that was a risk he could live with and preferred to the certainty of needing another valve in around 15 years if he got a tissue one (again, the re-operation issue is probably different with a pulmonary valve). The biggest problem he's had to date was when he an engine slipped and cut his arm - it took a little longer than normal blood to stop bleeding, but we're only talking a matter of a few minutes in total. He did used to go climbing with a friend but actually stopped before he found out about his valve problem - whether he'll start again I don't know but I'm sure it'd be a question of finding the time rather than not doing it because of the warfarin. I suppose climbing's dangerous regardless of whether you are taking warfarin or not!

The main inconvenience with warfarin is the need to take it every day and having regular blood tests, but both are something you get used to. And home-testing monitors, which work in a similar way to the ones used by diabetics, mean it's possible to take responsibility for your own anticoagulation (with the agreement of your doctors - we're still working on that!) and therefore have more freedom.

Good luck - whatever choice your son makes, it'll be the right one for him .

Gemma.

 

[liamty]

my husband Steve had metalic valve at age 21. he has carried on well with it. Any problems with inr stability have seemed to become more of an issue with age, some injuries and illnesses raise his levels easily, but age and other medications probably hinder that and a home inr monitor would really nip anything in the bud. Steve is now 44. He has ridden motor bikes, skied, and has still represented in sports, he is aware of not taking stupid risks, but so we all should be. We have found some employers have been scared of his history (you mention heart and some knock you back straight away), others have been great, but he's always passed any medical with flying colours. I think the fact that we call the valves 'metalic' does us no favours, I think most are in fact carbon (?!) which sounds less dangerous. I sometimes get dissapointed that magnets don't in fact stick to Steve, I would'nt have to worry about sticking notes for him on the fridge, I could attach them directly to him!!!! ........
Ask LOTS of questions....Good luck.

 

[tobagotwo]

Searching for Previous Threads

Searching for Previous Threads

There is a Coumadin forum, with a great deal of information from many members of this site:

Click on "Search" at the top of the page, then "Advanced Search" on the "Search Forums" menu that appears.

On the Advanced Search screen, change the "Find Posts From" setting to "Any Date."

In the "Search in Forums" column, highlight "Coumadin."

In "Key Word(s)," enter "Coumadin" (you may also want to try "warfarin" later).

Change "Show Results As" to "Threads."

Click on "Search Now" at the bottom of the page.

This should give you a wealth of information about living with warfarin that goes beyond a quick answering post or two.

Best wishes,

 

[Nan]

Hi, there is some occasional discussion about homografts lasting for a very long time, perhaps a life time. You might want to research that option also as well as discuss it with his surgeon.

Good luck to all of you.