Mechanical Valve replacement done at young age

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Himank

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Dec 7, 2021
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2
Hii everyone, I wanted a forum to connect with many of you and hopefully try to find people with similar experiences.
I am 25

The valve recommended at my age was mechanical valve and it has been 3 weeks since my operation. I just feel a bit weird knowing that I have to take blood thinners for rest of life. I mean, I understand i have to maintain a recommended INR and that I am going to do ( Along with all other restrictions of Warfarin).

I wonder, anyone here knows people who had their aortic valves replaced at such age and have been living well after 20-30 years? I have been told I should focus on taking care of myself.
Would love to hear from you all if anyone here had a long time with mechanical valve and are still fine or know people with similar experience etc.

Love to connect with you all more!
 

Chuck C

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Dec 5, 2020
Messages
1,294
Hi Himank and welcome to VR!

I wonder, anyone here knows people who had their aortic valves replaced at such age and have been living well after 20-30 years?
There are several people here who have been on warfarin since a young age- some for decades. I'm sure that @Superman, @dick0236 and @pellicle will give you some of their feedback when they see your post.

Like you, I have a mechanical valve, which was put in 8 months ago. Warfarin has been relatively easy to take and I have been able to keep up my physically active lifestyle with few changes.

I self monitor my INR with a home testing device. I strongly encourage you to look into self testing, as trials have found it to reduce the chances of an event by about 50%. It is not difficult to do. There are several threads on this forum about this as well.

I have been told I should focus on taking care of myself.
I could not agree more with this advice that you have received. We were all dealt the hand that we were dealt. We should be able to have a totally normal life and lifespan if we eat healthy, exercise regularly and keep up with our follow up doctor appointments.

Take care.
 

ATHENS1964

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Joined
Oct 19, 2019
Messages
264
I only have one piece of advice to give you because you are young, To be consistent do not miss dose ,put an alert on your mobile and have some pills with you in your backpack or keys also buy a measuring device and measure the INR weekly.
Εverything will be fine if you are consistent.
 

Superman

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Joined
Oct 3, 2009
Messages
1,442
Location
Grand Rapids, MI, USA
Hii everyone, I wanted a forum to connect with many of you and hopefully try to find people with similar experiences.
I am 25

The valve recommended at my age was mechanical valve and it has been 3 weeks since my operation. I just feel a bit weird knowing that I have to take blood thinners for rest of life. I mean, I understand i have to maintain a recommended INR and that I am going to do ( Along with all other restrictions of Warfarin).

I wonder, anyone here knows people who had their aortic valves replaced at such age and have been living well after 20-30 years? I have been told I should focus on taking care of myself.
Would love to hear from you all if anyone here had a long time with mechanical valve and are still fine or know people with similar experience etc.

Love to connect with you all more!
Welcome to the forum. As @Chuck C mentioned, I’ve been on Warfarin since I was 17. 31 years now. If you take a vitamin daily , you can take Warfarin daily. I just turned 49 and expect many more years on Warfarin. I’m married, have five awesome kids, travel my fair share, have a couple jobs. Overall, it’s just something that is (warfarin and cardiology checkups), but it’s not who I am and I can’t think of anything I haven’t done just because of Warfarin or my valve.

Any questions, feel free to ask. I hope you’re recovering well.
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,360
Location
Queensland, OzTrayLeeYa
Hi

and Goodmorning from Australia

Hii everyone, I wanted a forum to connect with many of you and hopefully try to find people with similar experiences.
I am 25
well as you probably spotted in hospital there are far more people having OHS at much older ages. I had my first one when I was about 10, my second at about 28 and my third at about 48. I'm now about 57


The valve recommended at my age was mechanical valve and it has been 3 weeks since my operation. I just feel a bit weird knowing that I have to take blood thinners for rest of life. I mean, I understand i have to maintain a recommended INR and that I am going to do ( Along with all other restrictions of Warfarin).
3 weeks huh, well do keep following all the directions they gave you. Warfarin is nowhere near as bad as they may lead you to believe. I suspect they do all that to use fear to make you compliant (which means following the directions of taking it). You should take that seriously but as everyone has said if you do it then you will be fine.

Now there is another Australian goes by the name of Poyda here. He's not real active as a member here but he's about your age (IIRC he was 27 at OHS, I'll ask him when he wakes up {South Australia is on a more Westerly Time Zone to Queensland and its about 5:45am here now}).
He reached out on the forum with issues of managing his INR due to the antibiotics (as you'll find in his bio that I linked above) and I began helping him manage himself back in 2019 IIRC.

As that implies I'm one of those who does full self testing and self management and so is he. Its actually pretty simple and I have developed a system to make it even simpler. Reach out by message here if you want to work together on that or just chew the fat on your situation.

So first off the bat I'd like to share my blog post on managing your INR and indeed dispelling some of the myths about warfarin


That's quite long and contains a lot of useful information, so I recommend you just bookmark it and go back to it each time you feel like reading it. I would be impressed if on first read you got 10% out of it.

Poyda is a typical young bloke, goes to football, works, drinks and whatnot. A typical excahange between us now on WhatsApp goes like this:

1638906582531.png


I don't try to talk him out of being a youth, but I do safeguard him.

However make no mistake, if you fool around with INR and don't pay attention to it it will bite you:


So like I say on another of my warfarin / INR management blog posts:

BUT: Don't fcuk with this stuff if you don't have a clue. You may get hurt, and that hurt may be permanent. Instead get a clue and start by having a read my other posts on INR management (use the INR tag in the tag list) keeping records and being on top of your own health. Reach out to me for assistance if you wish.​

Anyway looking after your health is generally an excellent idea which young people usually ignore and discover when they become old people (you know it goes that way right? We get old ... I was 21 once too). For example when I was a kid (first OHS at 10 right) I was very aware of the need to focus on my health. To me that meant
  • living right (exersize and stuff)
  • eating right (proper food, no bull$hit)
  • not smoking
  • boozen in sensible proportions
Now all my cousins are pretty much stuffed. Overweight, bad diabetes outcomes ... if you saw them in the supermarket you'd think "wow, that guy is stuffed"

My life has been pretty good (you can explore a bit of it on my blog Eg Finland). But I'll finish off here with the following. Self testing and self management has allowed me and my little tester to travel at will. I've been back and forward to Finland (which is a bloody long flight from here 26 hours in the air usually and 36 door to door) a few times where I XC Ski (not since 2018 sadly thanks COVID, I'm looking at you) and generally hang out.

So rather than talk about what I normally do (outside of working), its stuff like this at the moment:



So in summary life after OHS is probably better for many than if they'd never had OHS.



Enjoy
 
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dick0236

Eat the elephant one bite at a time
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Feb 10, 2007
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Location
louisville, KY USA
The valve recommended at my age was mechanical valve and it has been 3 weeks since my operation. I just feel a bit weird knowing that I have to take blood thinners for rest of life. I mean, I understand i have to maintain a recommended INR and that I am going to do ( Along with all other restrictions of Warfarin).
Welcome, Himank. I was 31 when I got my mechanical valve. I am now almost 86 and still have that original valve. After 55 years on Warfarin, I have only a few "must-do" in managing that drug.
*take warfarin as prescribed.....get a seven-day pill box to avoid missing or doubling up a dose.
*test inr routinely....preferably every one to two weeks and self-test at home after things settle down a little.
*don't "run with scissors".

In every way warfarin has had minimal impact on my living a pretty normal life......I think you will find warfarin will give you as much trouble as "a piss ant on an elephant".

Enjoy your new lease on life.:)
 

Poyda

Active member
Joined
Oct 27, 2018
Messages
28
Location
Adelaide, Australia
Hi @Himank

as @pellicle motioned i was quite young when i had my valve (mitral) put in. i was 23 at the time. now 27 and still going strong!

In terms of INR

When i first started managing my INR, i did it via labs (by this i mean a proper blood test) and my doctor, this lead to a lot of uncertainty and nervousness when it would fluctuate and i spent a lot of time worrying about my INR

I joined this forum, for the same reasons as you, made a post and met @pellicle, we then started working together with my lab results and managing my INR, since then time, my understanding and ability to manage my INR has vastly improved, along with the stability of my INR itself. Working with him has been great and i'm very thankful!

In early 2020, i made the decision to purchase a Coaguchek machine and it's one of the best decisions i've ever made, It takes all of 5 minutes to test and workout a dose (when i did via labs this would take most of a day) and it's much easier to get on top of fluctuations, if you're able to purchase one, i highly recommend it.

With the help of people on this forum, managing my INR isn't scary to me anymore, of i'm course mindful that certain things may affect my INR but i don't spend all the time worrying about it like i used to.

Recovery -
The good thing about being young is we tend to bounce back a little quicker, i myself was back at the Footy 8 or weeks after surgery, There a bit of road ahead but im sure youll be fine and i wish you well!

If you'd like, feel free to shoot me a message and ask me any questions :)
 

Cmf2p

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May 6, 2021
Messages
16
I have had a mechanical valve since I was 12 and am now 38. I had my first mechanical valve replaced at the age of 15 and still have it to this day. I have also been taking warfarin for over 25 years and do my best to check my blood and take every dose. I have been fortunate to not have any complications due to warfarin and hope to keep it that way by staying on top of my inr and taking my doses. You will be fine for a very long time as long as you are diligent in monitoring your inr and taking your meds.
 

Himank

New member
Joined
Dec 7, 2021
Messages
2
Sorry for late reply.

First of all, thank you so much for such encouraging replies! I really felt nice to see that there is an active community and where one can connect with other people having similar situation as yours.

@Chuck C - I have got a self monitoring INR device now. It is that Roche's Coagulocheck XS one and it is pretty good. Will get more used to it as time goes and I use it more.

@Superman - Wow 31 years on warfarin. That's pretty amazing and it is great to see you are going good. I hope I get used to all this. It has been like 3 weeks post surgery so I am still focusing on recovery! ( It is a bit slow lol).

@pellicle - I read your blog and that was pretty informative. Yeah, I know I need to be quite serious regarding this and I will make sure I remain vigilant since I want a long and productive life. And wow, to recover from so many OHS, that's pretty amazing. I must ask since the videos you showed me are from Finland- Does long air travel ( considering Australia is pretty far) create issues with warfarin and all? ( Considering time zones change and everything). I have plans to go outside my country later as well so would love to know your experiences.

@Poyda - Yeah, I hope I recover fast too. I can't wait to go back to my pre surgery routine as soon as possible. It has been 3 weeks only since surgery so it kinda sucks to have restrictions but hopefully it will all be clear by the time 6-8 week mark comes.

@dick0236 - Wow.... 55 years. That is so good to know that one can hope for so many years. I hope and will do my best to make sure I reach such long age as well. Will take good care of myself for same!
 

pellicle

Professional Dingbat
Joined
Nov 4, 2012
Messages
9,360
Location
Queensland, OzTrayLeeYa
Hi

I read your blog and that was pretty informative. Yeah, I know I need to be quite serious regarding this and I will make sure I remain vigilant since I want a long and productive life.
thanks and excellent

I must ask since the videos you showed me are from Finland- Does long air travel ( considering Australia is pretty far) create issues with warfarin and all? ( Considering time zones change and everything). I have plans to go outside my country later as well so would love to know your experiences.
Interesting that you would take it that way. I'm actually from Australia and I travel a bit (pre COVID) to and from Finland because that's where my wife is from.
I made this note in the "about me" section of my blog:
About me
LocationKillarney, Queensland, Australia
IntroductionIn the first decades of the 21st century I've lived in the following countries (for between 3 months and 3 years): Australia, Japan, Korea, Finland and India. My education ranges from Biochemistry - Electrical Engineering - Information Technology and Environmental Science. There is a lot I like to write about, and I put the fragmented stuff here.
InterestsImaging, photography, hiking, skiing, old convertible cars
Favourite FilmsBlade Runner, Empire Strikes Back, GATACA, Blues Brothers and many others
Favourite MusicClassical, Jazz, Blues, Rock and Pop

I should probably add in scooters now ;-)

Travel so far has caused no issues, I >ALWAYS< keep my coaguchek in my carry-on (because lost baggage and bashed baggage).

Time zones make no difference that I've ever observed (and I'm a detailed documenter). I usually keep taking my pill on the time zone I left until I'm in my destination home. Then I just revert to the normal time I take it (so 7pm).

I've sofar found that 99.9% of what you hear about warfarin is one of the following:
  1. wrong
  2. based on a misunderstanding
  3. exaggerated
  4. laughable

Best Wishes and reach out if you need assistance when you start your ratsak career.

1639298854993.png


and never loose your sense of humour ;-)
 

pellicle

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Nov 4, 2012
Messages
9,360
Location
Queensland, OzTrayLeeYa
What do you know about jazz??
dunno what to say: I like it?
Miles Davis is a genius

Oscar Peterson too ...
such a good album with a fascinating back story (for an ex-sound girl like me at least)

heck we even have some good ones in Australia too.

Joe Jackson does some great covers too.

However once you listen to Vince Jones doing this cover and replace the word you with _pew and skin with chin you really can never go back
(Gavin, if ever you read this "thanks mate")

I know that I like covers in lounge style (not strictly Jazz) such as by Frank Bennet

this one always cracks me up ...


Enjoy

PS: Australian performer you may not know and a "blues crossover" bit

we all suffer from depression now and then....
 
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