Overwhelmed about warfarin

[Emmapenny]

Hiya - my son who is 15 had a ONX mechanical valve fitted nearly 6 weeks ago. We are in the UK.
He is recovering well from surgery.
I was given a warfarin ‘counselling’ session before we left the hospital. Thankfully my son was not present because it has absolutely terrified me. I left feeling like he was a ticking time bomb who was going to bleed to death if he fell over or have a stroke if he ate too much broccoli.
I have spent 2 weeks trawling the internet trying to work out what’s real and I now think maybe the nurse was trying to scare me into conformity but all it has done is absolutely scare me that he can’t go out and live his life.
I’ve been really trying to get some perspective but keep going back to the tone of the session I had.
I have gone back and read through so many posts on here (possibly a bit obsessively) trying to get some reassurance but I’m finding it really hard to move forwards.
Anyone understand how I feel?

 

[pellicle]

Hi and welcome

well the internet is a big place and frankly Google only wants to broker selling you things. Without the right questions it'll turn into a spiral of ********

I have spent 2 weeks trawling the internet trying to work out what’s real and I now think maybe the nurse was trying to scare me into conformity but all it has done is absolutely scare me that he can’t go out and live his life.

its a sad thing but the reason they try to scare you is because 1) most people are absolutely crap at taking their medications 2) if you do the wrong thing with warfarin it can bite.

I have gone back and read through so many posts on here (possibly a bit obsessively) trying to get some reassurance but I’m finding it really hard to move forwards.

well lets see if I can help. Firstly I'm going to offer this post:
https://cjeastwd.blogspot.com/2014/09/managing-my-inr.html
which is lengthy and detailed and I wrote it as a reference as much as an introduction. I think that this paragraph (which was the first one in the earlier versions) sums it up

Firstly - the good news​

I wanted to say that managing my INR myself is incredibly simple and takes me about 5 minutes per week. Learning to use an INR monitoring machine is dead simple (a quick video provided) and (almost) any ***** can do it. If you buy strips online they cost so little that if you are an able bodied person you just couldn't consider doing it any other way.​

​

By using the Coaguchek XS I have been essentially free to travel as I wish (moved from Australia for a year in Finland, traveled to the UK and other places) and more or less unbound in any way by being on anticoagulants.​

​

As a bonus its been really cheap, with tests costing me less than $6 per test.​

So have a quick skim through that and see what you need to do from there. A quick point (mentioned in that post) is the actual breadth of "safe INR", which is this:

When it comes to INR range and the health issues with being too low or too high, a great resource is a study which has covered some thousands of patients and documented INR and "events". The important chart (for those of us with mechanical Aortic valves) is this one (article here)​

​

​

​

​

Which shows that between 2.0 and 3.5 the number of "events" (you know, bleeds, thrombosis ... the usual stuff) is really low. Either side of that and the numbers step up. This feeds into my strategy, helping me set my bounds. Interestingly my surgeon initially recommended a range of 2.2 ~ 3 ... which sits well with the above findings...​

​

Are you self managing? I know that the UK encourages self testing and I'm happy to spend some time and guide you through the ropes.

Its getting late here in Australia, so I'll check in in the morning and see what you want to do, but reach out by private message here if you like (or don't if you don't) and I'll try to arrange time for a chat.

Oh, on my blog (because there really is quite a lot there) I've put all INR related posts under this tag.

Sorry about the ordering of that ...

Best Wishes

 

[Emmapenny]

Thank you so much for taking the time to reply and put some links on here. I’ve just read some of your blog and it’s really helpful and informative. I’ll go back to it again later.

We are home resting and being managed remotely by the clinic at the hospital. I feel after reading your info they are using similar theories with dosing - as example they reduced him by .25 on Friday as it had shown an upward trend. And I do feel happy with how that seems to be working.

I’m conscious about how it works when he starts to get more active as you have mentioned how much exercise impacts levels. He’s usually a physically active boy with a high metabolism and was very fit before surgery but he’s only just been walking so far and I do t think he feels too comfortable doing much more yet but it will come so I guess it’s good that I’m aware in advance.

I was told on discharge that if I didn’t conform with the team then they would involve social services which shocked me as I can’t imagine anyone needing to be threatened like that but they said they have to as some people don’t bother - can’t quite get my head round that but reading your comment suggests it much more common than I could imagine.

We are just at the start of this journey and I’m trying to protect my son from the fear whilst keeping him safe. He’s 15 so not too much longer before he’s an adult but he’s a worrier and I just want to be able to manage the worry as best I can for him for now.

It’s funny how I do feel calmer already just by reaching out this morning.

Thank you

 

[carolinemc]

Hiya - my son who is 15 had a ONX mechanical valve fitted nearly 6 weeks ago. We are in the UK.
He is recovering well from surgery.
I was given a warfarin ‘counselling’ session before we left the hospital. Thankfully my son was not present because it has absolutely terrified me. I left feeling like he was a ticking time bomb who was going to bleed to death if he fell over or have a stroke if he ate too much broccoli.
I have spent 2 weeks trawling the internet trying to work out what’s real and I now think maybe the nurse was trying to scare me into conformity but all it has done is absolutely scare me that he can’t go out and live his life.
I’ve been really trying to get some perspective but keep going back to the tone of the session I had.
I have gone back and read through so many posts on here (possibly a bit obsessively) trying to get some reassurance but I’m finding it really hard to move forwards.
Anyone understand how I feel?

Here we share information, not to scare anyone. Experiences with Warfarin. We all here have had experiences and love to share the positive. Your son can and will live a fun active life. Warfarin is not an end all to living life to the fullest. With care and understanding, he can lead a very active life. The nurse was making sure you knew the very basics and to understand how to work with it. Please know we share positive outlook with blood thinners. So let your son live life to the fullest. It is harder being a parent and trying to grasp this new world. But do not keep your son in a bubble. Let him live and you yourself. We learn to deal with it in the positive and you can too. Just keep learning and letting it sink in positive.

 

[dick0236]

Hi Emmapenney. I was older (31) when I received my mechanical valve. I've been on Warfarin for over 55 years and have NEVER had a bleeding issue even tho I've had a number of injuries that required stitches to close the wound. I have eaten whatever I like including "green vegs" in moderation........just don't eat a "boatload" at a sitting.....or seven days a week.

I can imagine that a teenager might have some challenges being on Warfarin. There are several members on this forum that have lived successfully since childhood and hopefully, they will respond to your post.

My only advice is "TAKE THE WARFARIN as prescribed" and wear head protection during contact sporting activities.

 

[pellicle]

It’s funny how I do feel calmer already just by reaching out this morning.

Thank you

That's great, and welcome

 

[Chuck C]

Hi and welcome to the forum.

I had my aortic valve replaced 17 months ago with a mechanical valve and have been on warfarin since. I self manage, which is really simple to do. Pellicle has some great references to help you in this area. I self test and am in range well over 90% of the time.

Your son can live a very active life and you will probably come to learn that he can eat whatever he wants, including broccoli, although some here like to use warfarin as an excuse to not eat broccoli and brussel sprouts, but that is just because they really don't like them.

Personally, I eat what I want and live a very active life.

You mentioned broccoli. I include a large amount of broccoli slaw in my Mediterranean salad, which I eat every day. Just calculated it and I am taking in about 170g of broccoli per day. I also am eating about 100g of spinach per day and a few other vegetables which include vitamin k. Foods with vitamin k are among the most healthy to eat and you probably don't want to limit them. But, as we like to say, know thyself. With self testing you should be able to determine if altering the amount of foods with vitamin k moves his INR very much. It does not for me, and many others here report the same thing. Common sense should also apply. He would not want to eat no leafy greens or vegetables, and then suddenly go on a diet eating 250g/day.

There is a saying that many use here which goes: "Dose the diet, don't diet the dose." Translated, this means, eat what you want, and adjust your dose accordingly. My suggestion is that if he enjoys vitamin k rich foods and/or eats them because they are important for good health, then he should eat a diet with plenty of vitamin k rich foods. But, ease into them and check your INR as your go. When I came out of the hospital I would estimate that I added about 50g of leafy greens/day, then worked it up from there over the next month or so, checking my INR at each incrimental change. If the amount of leafy greens was moving my INR down, it was not even detectible. I was eating a lot of leafy greens and such before I was on warfarin and within a couple of months of surgery I was back to eating the same amount of foods rich in vitamin k. As I said previously, my INR is almost always in the proper range.

There have actually been studies which suggest that increasing vitamin k intake helps to stabilize INR:

https://www.healio.com/news/cardiol...ze-anticoagulation-in-patients-using-warfarin
I would also mention that I life a very active lifestyle. I am currently doing about 8 hours per week of cardiovascular exercise, of which about 7 hours is martial arts. I have also done lots of hiking, running, body surfed and bike riding, since being on warfarin.

He might not want to take up juggling machetes or pursue a career as an MMA fighter, but really there is no reason why your son should not be able to live a completely normal life on warfarin.

 

[vitdoc]

You mentioned that you are self testing. The next step is to learn to dose the INR appropriately on your own. This will enable your son to deal with the issues directly. He will be doing this presumably for the rest of his life unless some magic valve comes out that doesn't need anticoagulation and lasts indefinitely.

Second the idea of eating foods with high levels of Vit K on a routine basis makes sense since variation in the Vit K intake will on a percentage of the total K intake will be smaller if the baseline K is larger. Having said that I personally don't worry about my eating habits very much. If one changes their diet from eating say infrequent salad to eating salads every day then there will be a potential significant change in the INR. Self testing will help with the fluctuations.

I have been on warfarin for 39 years mostly without major issues. I did have a GI bleed from some unusual lower intestine blood vessels that was more difficult to control with anticoagulation. I had to be reversed to stop the bleeding. But that was one unusual episode in 39 years. I have skied and bicycled all over the world and still bike at age 74. So as I have said before I am not thrilled with being on anticoagulation but at the same time it has not proven to be a major issue in my life. (so far)

Finally the people you see in the anticoagulation clinics are trying to do their jobs but they are not necessarily the cream de la cream of the medical world.
You and your son should be able to deal with the anticoagulation independently if you wish without having social services call on you. The UK does have a reputation of being a bit of a nanny state but I would hope you can get them to let you and your son more independence. ( I worked on two occasions in the British medical system)
Good luck.

 

[pellicle]

Hi @Emmapenny

what Chuck says here is absolutely right

There have actually been studies which suggest that increasing vitamin k intake helps to stabilize INR:

to take it a bit further evidence is emerging that most of this warning about eating greens is not even correct. This recent publication makes that case quite convincingly with a meta-analysis of much of the publications to date:

https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4998867/
I believe the issue at hand is that the structure (pecking order?) of the medical system attracts and promotes people with a flimsy understanding of the mechanics of science to fill administrative and clinical roles. This and many other factors creates a perfect storm of administration by fear (because its one of the few psychological tools shown to be effective) in the face of a lack of compliance with drugs.

My own observation is that the most trumped up and finger waving in the medical system are the lowest on the pecking order and (if you ask me) the least well trained and the lowest in actual science (these would be dieticians, typically a laughing stock when I did my degree).

And yes this lack of compliance is rife in patients and has been for millennia:

From what I read up to 50% of patients fail to take their warfarin regularly. That you're here means that you are unlikely to be one of them (and without doubt your son probably too without your care and attention.

One of the outcomes possible from extended failure to comply with warfarin (yes, even with a magic On-X valve)
https://www.valvereplacement.org/th...-compliance-with-an-on-x-aortic-valve.888128/
To my mind however the real solution is engagement and training. The real revolution in valves now is down to the management of drugs. We've already seen that clearly in the directions that diabetic managment has taken with microelectronics and in reality that is also happening in Anti-Coagulation Therapy (ACT) management. While outdated in specifics the message of this (segment of a) presentation remains core truth

https://studio.youtube.com/video/enluDpPBVaE/edit
Lastly I thought I'd share something about the Coaguchek which isn't (hmm ... maybe it should be) on my blog post (so, ... yet)



That's an assistance in the part of "getting enough blood" for a good test. This is aimed more at Americans who seem to not be able to buy these things (or indeed like your situation probably is, get them for free from the NHS).

Anyway, if I have anything to offer more than just words its that I can offer you some training and support. I like to "teach a man to fish" not deliver fish.

Best Wishes

 

[pellicle]

Finally the people you see in the anticoagulation clinics are trying to do their jobs but they are not necessarily the cream de la cream of the medical world.

(*chortle)

well said ;-)

 

[TGM]

Hiya - my son who is 15 had a ONX mechanical valve fitted nearly 6 weeks ago. We are in the UK.
He is recovering well from surgery.
I was given a warfarin ‘counselling’ session before we left the hospital. Thankfully my son was not present because it has absolutely terrified me. I left feeling like he was a ticking time bomb who was going to bleed to death if he fell over or have a stroke if he ate too much broccoli.
I have spent 2 weeks trawling the internet trying to work out what’s real and I now think maybe the nurse was trying to scare me into conformity but all it has done is absolutely scare me that he can’t go out and live his life.
I’ve been really trying to get some perspective but keep going back to the tone of the session I had.
I have gone back and read through so many posts on here (possibly a bit obsessively) trying to get some reassurance but I’m finding it really hard to move forwards.
Anyone understand how I feel?

Hello there.

I am a fellow mom with a kid on Warfarin. My son, aged 20, has had quite a journey which included a mitral valve replacement at aged 4. He’s been on Warfarin for the past 15 years and I do understand your worry!! In those 15 years, we have had only 3 instances in which there were concerns related to Bleeding/bruising. Two of those occurred when he was young and fell down hitting his head on concrete and another when a rock hit his ankle. He had significant swelling and bruising but nothing that required more than medical monitoring. We do have a home INR monitor which is extremely helpful. My son is now fully independent in managing his INR as he lives away at college but it took a good year or so to get him to that point. The biggest thing for us is ensuring that he takes his medicine daily. He’s been great about it since I told him he could not go away to college until he was fully responsible for taking his medicine and checking his INR, calling it in to his Dr and adjusting accordingly. My son drives and that is probably my biggest worry. He has a medical alert necklace but I’m not convinced he wears it. He does have his medical info in his phone though and you should have your son do that too. And by the way, don’t worry about what he eats. Teens are not going wild on greens. If his INR is too high, his Dr might suggest a lower dose and a spinach salad but I’ve found that pediatric providers are very realistic about the diet part of warfarin. I do hope that your sons recovery goes smoothly and that his INR remains steady. Don’t go to Dr Google for your medical info….I learned that the hard way too!

 

[Timmay]

Hi Emma and welcome!

You’ve come to the right place for sure. There are many of us “mech valvers” here. Some of us relatively new (like me, a little over 3 months ago) and going all the way up to **** who got his valve installed before I was even born … and I’m over 50!

Take a breath. Seriously. You got this. So does your child. For sure. No doubts.

It’s really scary when FIRST thinking of warfarin because the doctors are pumping you with all negative information - even super rare cases - and then giving you NONE of the exceedingly large amount of success stories. And there are many.

On this board alone we have competitive martial artists, mountain bikers, scooter riders, skate boarders, shooters, mechanics, etc.

We all live normal lives. We really do. Yes, we have to do a fingerprick test once a week. No problem. Becomes second nature and we do it less than diabetics!

You may get overwhelmed a bit with all of the information that we have here. That’s ok. Just walk away, take a breath, and come back. Feel free to ask for clarifications, explanations in a different way, etc. We’ll help however we can.

 

[Emmapenny]

Hello there.

I am a fellow mom with a kid on Warfarin. My son, aged 20, has had quite a journey which included a mitral valve replacement at aged 4. He’s been on Warfarin for the past 15 years and I do understand your worry!! In those 15 years, we have had only 3 instances in which there were concerns related to Bleeding/bruising. Two of those occurred when he was young and fell down hitting his head on concrete and another when a rock hit his ankle. He had significant swelling and bruising but nothing that required more than medical monitoring. We do have a home INR monitor which is extremely helpful. My son is now fully independent in managing his INR as he lives away at college but it took a good year or so to get him to that point. The biggest thing for us is ensuring that he takes his medicine daily. He’s been great about it since I told him he could not go away to college until he was fully responsible for taking his medicine and checking his INR, calling it in to his Dr and adjusting accordingly. My son drives and that is probably my biggest worry. He has a medical alert necklace but I’m not convinced he wears it. He does have his medical info in his phone though and you should have your son do that too. And by the way, don’t worry about what he eats. Teens are not going wild on greens. If his INR is too high, his Dr might suggest a lower dose and a spinach salad but I’ve found that pediatric providers are very realistic about the diet part of warfarin. I do hope that your sons recovery goes smoothly and that his INR remains steady. Don’t go to Dr Google for your medical info….I learned that the hard way too!

Hiya - thanks for your thoughts.

Interested to hear you don't think your son wears his medical alert necklace. I think my son will be the same but I haven't spoken to him yet as he's not out the house much at the moment. I think he won't like to 'stand out in anyway' teenager life........

Do most people wear them do you know?

 

[Emmapenny]

Thanks so much to everyone for taking the time to post on here.

It is really helping me to feel less alone

 

[sharky7]

AWESOME, that is to hear ya now feeling much better to how to now deal with this BLOOD THINNER thingy, and having also some peace of mind in trying to figure out how it all works!!!
I start with, now having a SAINT JUDE MITRAL since June/2015, although I have been on WARFARIN for many years before, per my heart doc, and an attempt at fixing MITRAL VALVE with an O-ring!
It wasn't easy at first, in as working with the VA, and until I got lucky and picked up a NEW machine, then started home testing, like day and night! it is now a lot easier to do, AND i would add to that, if I can do it, ANYONE can do it. It may be that easy, although I am that slow in learning, but I do learn well, I think.....LOL
I learned a few important things about all of this that I will now count down!
1. I own a calendar I use to make sure I mark it with an X, that I dont forget to take WARFARIN. [and my other meds.]
2. A few claim it is important to take it every day, and at the "same time", again, everyday! {ya good luck with that those that are able to do that, I have tried, but find it almost impossible to do and take it, everyday and at the same time! What I do it this, try to keep at least 12hours or so between doses of Warfarin. {{{IN AS if i forgot, i take it as early as I can the very next day, then add 12 hours to that, than take my daily dose for that day, doesn't happen too often, and this is what I do if it happens!}}}
3. keep my MEDS in a case that is marked, the DAYS of the WEEK, chance are that they have your child now on more than just the Warfarin, heart meds for one, if not others, right?
4. PLEASE do not sweat, your in good company now, as I am now sure that you know that now by your last comments, good people helping good people, and going thru the same things that life has placed on us, and doing it like we are indeed the champions, and we all are. It takes a bit of time to get the "feel of it" on how to deal with this new challenge, and now and with "a little help from ya friends", you are now, and i pronounce you and your son are both champion/s
3. we are all humans, and humans are bound to error from time to time, this is what being human is all about!
good luck to you and your son, HHO {right Chuck?}



{{{I HAVE BEEN TOLD THAT I PERHAPS SHOULD NOT USE THE CAPS LOCK, AND THAT IT IS CONSIDERED YELLING, I DONT SEE IT THAT WAY, I DO NOT CONSIDER IT YELLING, NOT AT ALL! AND IF ANYONE DOES THAN THAT IS ON THEM, IT IS ON THEM FOR NOT BEING ABLE TO COMPREHEND THE FACT THAT THERE ARE TIMES WHEN, IT IS NOT CONSIDERED YELLING/SHOUTING/SCREAMING!!!
SO WHERE WAS I? OH YA, EVERYONE HAVE A NICE DAY, OR NOT, AS IT IS NOT FOR ME TELL YOU OR ANYONE TO DO ANYTHING, YOU ARE ALL ADULTS AND GET TO DECIDE TO EITHER HAVE A NICE DAY OR NOT! SO NOW I WOULD FIGURE TO CORRECT THAT AND SAY IT THIS WAY, FOR THOSE THAT CHOOSE TO DO SO, PLEASE HAVE A NICE DAY!}}}

 

[pellicle]

that is to hear ya now feeling much better to how to now deal with this BLOOD THINNER thingy,

just wondering why you capitalise blood thinner

I mean if you know its ACT and not actually the equivalent of turps for the blood you could use "blood thinners" or even blood thinner ... but using CAPS is for acronyms or YELLING

HELLO Mr POLLY PARROT

 

[sharky7]

To not go into this with much detail, as it is not needed, the Spelling, the USE of the caps lock, or any number of things are changing as we speak, by the week, by the day, and fact is, by the moment! things changes, and seems that a few just need to mention it, even though it is nothing but a big nothing burger!
I am speaking of even the biggies and of the huge nothing burger!!! as in, america is not a country, and there is no such thing as an "American", and only have to do with the USA! Canada/Brazil/Mexico....etc. are all within, and part of America!


Now about those darn CAPS, and I will only say this once, i figure it this way, I am 69 right now, and will be until MAY/2023 and i figure I have earned the right to yell if i want to, and/or use CAPS whenever I feel the need, and not have to explain myself! Sorry if I offended anyone here, this was not my intention, and now that I have done it, i hope that I wont be kicked out for expressing my freedom of speech, and those run this place does not follow Mark in that he chose to censor! Which happens to be the wrong choice, I think!

"HELLO Mr POLLY PARROT"
I was "just wondering" also!!! "

I mean if you know its ACT and not actually the equivalent of turps for the blood you could use "blood thinners" or even blood thinner ... but using CAPS is for acronyms or YELLING

HELLO Mr POLLY PARROT

 

[pellicle]

the USE of the caps lock, or any number of things are changing as we speak, by the week, by the day,

only in your world

 

[sharky7]

only in your world

So now, I ask others here, you all feel the same as the one with blinders on? Or could it be even remotely possible that I may BE correct? JUST WONDERING!!! Or perhaps the self proclaimed "Professional Dingbat" in his/hers opinion is correct? Asking for a friend!!! Condescending???

 

[Timmay]

So now, I ask others here, you all feel the same as the one with blinders on? Or could it be even remotely possible that I may BE correct? JUST WONDERING!!! Or perhaps the self proclaimed "Professional Dingbat" in his/hers opinion is correct? Asking for a friend!!! Condescending???

@sharky7 - I would suggest taking this conversation to the Off-Topic forum (Off-Topic Forum). We're specifically in this thread to assist Emmapenny. No need to discuss who agrees or doesn't agree with Caps Lock, etc.