St judes mechanical valve

[Tinsley99]

I had my valve replacement 4th October I’m papworth royal hospital I’m 21 and I wanted to know if anyone with the same valve as me has done anything to help block the noise from their valve ie gym
Would be very helpful as all I do before I sleep I’d think about my heart ticking and how I can’t stand the fact it has to do it!
thank yku I’m advance

 

[LondonAndy]

I have a St Jude (29mm) which was put in over 5 years ago now, when I was almost 49 years old. I have long banned mechanical clocks from my house as I hate the ticking of those, but much to my surprise I have hardly noticed the ticking of my valve. I have to focus my attention and listen for it.

To be honest I don't think there is much you can do to reduce the noise. I have seen a number of posts about ticking on here, and don't remember anyone having a solution, but if anyone has a suggestion I am sure they will comment here. Have you searched the site for "ticking"?

It does seem to vary for people. Is your blood pressure high? That could be a factor. You will hopefully find you gradually get used to it, or perhaps as it 'beds in' it reduces ....

 

[pellicle]

I'm glad that after your surgery you're back at the Gym already. That's good.

I'm a good bit older than you now but was 12 or so on my first and 28 on my second surgery, and while I didn't get the ticking then (I got it on my third), I can say from all of this one must make adjustments to life because the only constant in life is change.

The problem for us valvers (compared to the rest of the population) is that we get a highly specific injury that 1) makes us better 2) leaves us with changes we need to adapt to. Just like if you had a bicycle accident and got a scar on your face, you can either let that form you or you can decide how you wish to be and ignore it.

My advice is that the goal is to get better and not to get bitter, so hating what is won't achieve better but it is the path to resentment. I don't reckon that's a path to happiness.

There are people who'll tell you that the sound reduces over time, me I've not found that. However it just may be that you hear it more than others (especially at the gym. I hear mine at night (every night) as I'm going to sleep, but I now use it as a tool to focus on to go to sleep, like the old "counting sheep" thing.

I recommend also you consider taking a class in meditation, its a good skill to have.

I'm glad you're recoving well and I sincerely hope you take INR management under your wing and make that your goal, because you can't rely on others as consistently as you can rely on yourself. Plenty of people here to talk to about that, I can put you in touch with a 24 year old guy from Adelaide who I have been teaching self management too (and who's just bought his own self tester too) and that may help.

Best wishes

 

[LondonAndy]

Excellent advice from Pellicle, which I completely agree with. You will find a lot of posts about self testing your INR, and if you are not already doing so get it sorted. I wrote a little note for my doctor expecting to have to convince him to let me get a meter etc, but didn't need it - he was 100% in agreement, as is the National Institute of Clinical Excellence, which sets best practice for the NHS. Home testing is BY FAR the safest way to manage your Warfarin dose, as well as making life easier - it is hand held, you can take it anywhere and do a test in less than 5 minutes with quality of result similar to the hospital clinic. I'm off to the Canaries in two weeks' time with mine.

If you want a copy of my note, and a link to the NICE report -click here. I am not sure what things are like in your area, but here in Enfield I had to buy my meter (£300) and then get the test strips on prescriptions. In some places the meters are now free, or available from charities. Happy to chat too, if you wish.

 

[pellicle]

.. You will find a lot of posts about self testing your INR, and if you are not already doing so get it sorted

seems oddly self serving of me to have liked that, but I did, so I did ;-)

Hope you're New Year is shaping up well

 

[user 16827]

Can someone direct me to where the report say the gold standard is "weekly testing" ?

i don't seem to able to find that part, thanks

 

[pellicle]

Can someone direct me to where the report say the gold standard is "weekly testing" ?

i don't seem to able to find that part, thanks

because the UK walls this report to UK only I can't read it, but its here:
https://cks.nice.org.uk/anticoagulation-oralPS: just read the webcache of that ... does not seem to make a case for weekly regular testing after someone is stable.

Interestingly if you look at the PROACT trial for On-X to obtain their certification they actually did weekly testing. Which to me suggests that if you're going to live on the lower edge of INR that weekly testing is advisable.

Let me dig more (its a topic which is unlikely to find consensus)

 

[pellicle]

Mr @leadville
Didn't take long to dig something up:
At-Home Versus In-Clinic INR Monitoring: A Cost–Utility Analysis from The Home INR Study (THINRS)

but its a pretty weird structured study I'll say ...

 

[user 16827]

Thanks @pellicle i have just browsed your link CKS is only available in the UK

I still can't see the recommendation of gold standard weekly testing ?
it would be helpful to show this information for an upcoming appointment i have

 

[user 16827]

Mr @leadville
Didn't take long to dig something up:
At-Home Versus In-Clinic INR Monitoring: A Cost–Utility Analysis from The Home INR Study (THINRS)

but its a pretty weird structured study I'll say ...

Thanks mate

 

[user 16827]

I had my valve replacement 4th October I’m papworth royal hospital I’m 21 and I wanted to know if anyone with the same valve as me has done anything to help block the noise from their valve ie gym
Would be very helpful as all I do before I sleep I’d think about my heart ticking and how I can’t stand the fact it has to do it!
thank yku I’m advance

Some people hate the ticking, some people find it reassuring, apart from using some sort of white noise which doesn't really work as the noise is internal there is not much you can do.

this will not help you at the moment , but a lot of people including myself grow to like the noise.
hopefully you may become one of those people, this is the new you

Best wishes

 

[pellicle]

it would be helpful to show this information for an upcoming appointment i have

ahh ... so you're wanting evidence to support it? Perhaps @LondonAndy can fish out where he found that.

I've seen (just in the last 20 min blur of reading) at least two examples showing that time in theraputic range was increased by weekly self testing compared to 4 week interval testing. I'll try to find them tomorrow and post here.

BTW, my mate in Adelaide is now a full convert to self testing (curiously we'd been managing on lab INR tests, but ignoring their guidance {in full consultation and support of his doctor because *they* couldn't keep his INR in range}) as after 6 months of weekly INR vein draws he was getting vein scarring ... which is just ONE MORE of the reasons why I advocate the finger prick POC testing.

Some distraction for dog loving MTB downhillers

 

[Tinsley99]

I'm glad that after your surgery you're back at the Gym already. That's good.

I'm a good bit older than you now but was 12 or so on my first and 28 on my second surgery, and while I didn't get the ticking then (I got it on my third), I can say from all of this one must make adjustments to life because the only constant in life is change.

The problem for us valvers (compared to the rest of the population) is that we get a highly specific injury that 1) makes us better 2) leaves us with changes we need to adapt to. Just like if you had a bicycle accident and got a scar on your face, you can either let that form you or you can decide how you wish to be and ignore it.

My advice is that the goal is to get better and not to get bitter, so hating what is won't achieve better but it is the path to resentment. I don't reckon that's a path to happiness.

There are people who'll tell you that the sound reduces over time, me I've not found that. However it just may be that you hear it more than others (especially at the gym. I hear mine at night (every night) as I'm going to sleep, but I now use it as a tool to focus on to go to sleep, like the old "counting sheep" thing.

I recommend also you consider taking a class in meditation, its a good skill to have.

I'm glad you're recoving well and I sincerely hope you take INR management under your wing and make that your goal, because you can't rely on others as consistently as you can rely on yourself. Plenty of people here to talk to about that, I can put you in touch with a 24 year old guy from Adelaide who I have been teaching self management too (and who's just bought his own self tester too) and that may help.

Best wishes

Thank you for your post and I am not at the gym yet just a few more weeks and I’ll be there and playing football too not competitively as I know it’s a no go from all the blows

my mum did say about the meditation as she does it herself for as long as I can remember so I propbbaly will look into that!

my INR levels are finally where they need to be unfortunately I do not have the money to buy my own testing kit at the moment but I look forward to having it

thank you again

 

[Tinsley99]

Excellent advice from Pellicle, which I completely agree with. You will find a lot of posts about self testing your INR, and if you are not already doing so get it sorted. I wrote a little note for my doctor expecting to have to convince him to let me get a meter etc, but didn't need it - he was 100% in agreement, as is the National Institute of Clinical Excellence, which sets best practice for the NHS. Home testing is BY FAR the safest way to manage your Warfarin dose, as well as making life easier - it is hand held, you can take it anywhere and do a test in less than 5 minutes with quality of result similar to the hospital clinic. I'm off to the Canaries in two weeks' time with mine.

If you want a copy of my note, and a link to the NICE report -click here. I am not sure what things are like in your area, but here in Enfield I had to buy my meter (£300) and then get the test strips on prescriptions. In some places the meters are now free, or available from charities. Happy to chat too, if you wish.

Hi thank you for the reply

I do want my own tester but I can’t actually afford one for quite a while as they are expensive for someone on a small wage like me but really look forward to getting 1 one day if I can! I’m on 6mg at the moment and they have been stable for about 3 weeks now which is good

 

[pellicle]

my INR levels are finally where they need to be unfortunately I do not have the money to buy my own testing kit at the moment but I look forward to having it

let me know if you ever need a hand with managing INR

 

[Tinsley99]

I have a St Jude (29mm) which was put in over 5 years ago now, when I was almost 49 years old. I have long banned mechanical clocks from my house as I hate the ticking of those, but much to my surprise I have hardly noticed the ticking of my valve. I have to focus my attention and listen for it.

To be honest I don't think there is much you can do to reduce the noise. I have seen a number of posts about ticking on here, and don't remember anyone having a solution, but if anyone has a suggestion I am sure they will comment here. Have you searched the site for "ticking"?

It does seem to vary for people. Is your blood pressure high? That could be a factor. You will hopefully find you gradually get used to it, or perhaps as it 'beds in' it reduces ....

Hi no I haven’t I only found this yesterday I will try tho! My blood pressure is always perfect when checked so it’s not that

I just would like not to hear the ticking as I’m finally seeing somebody and while watching a film it’s louder than ever apparently to her it’s not but I still get nervous about it

there’s just been to much change in my life and it’s unfair but life goes on just upset I couldn’t celebrate my 21st birthday as I was in critical care for it and now can’t drink alcohol which is very hard for me at this age because that’s what everyone is doing so now I’m not able to do things with my friends and it’s really crap just feels like it’s going to take ages for me to be happy about everything I know I sound ungrateful I don’t mean too!

 

[Tinsley99]

let me know if you ever need a hand with managing INR

Thank you I think I’m okay at the moment just want to go travelling soon but need one of them hand held testing ones so I can

 

[pellicle]

... just want to go travelling soon but need one of them hand held testing ones so I can

I used to regularly shuffle between Australia and Finland ... so yes, their value is not to be underestimated.

This blog post of mine may be a good reference for you when you start getting into INR management
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
best wishes

 

[Tinsley99]

I used to regularly shuffle between Australia and Finland ... so yes, their value is not to be underestimated.

This blog post of mine may be a good reference for you when you start getting into INR management
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
best wishes

Thank you

 

[nobog]

Pellicle could comment more than I know but I think the case could be made for INR checks every 3-4 days based on the information below:

from: Warfarin Therapy: Evolving Strategies in Anticoagulation

The half-life of racemic warfarin ranges from 20 to 60 hours. The mean plasma half-life is approximately 40 hours, and the duration of effect is two to five days. Thus, the maximum effect of a dose occurs up to 48 hours after administration, and the effect lingers for the next five days.

The variables just in the above paragraph could keep a statistician busy for days figuring out a design-of-experiments. Monthly checks just don't seem to cut it.