Has this happened to you?

[Pefki]

2 weeks post mechanical valve and aorta replacement, recovering ok even after contracting pneumonia in hospital day 2, home 1 week and taking my 5m warfarin as prescribed and some painkillers but less and less every day, going to anticoag clinic twice a week but the long weekend meant an extra day without testing and then a downward trend of INR has me now on 7mg and 2 shots of heparin a day. What am I doing wrong? Don't drink and have been really careful with almost no green leafy veg which I love. Also, the pin prick tests at the 2 hospitals I attend, are always completely different to the blood test result so now only doing blood tests. Is it my age? I'm only 26. The anticoag professional says it happens, it's early days, it's very bad luck that the pin prick test isn't givibgbtrue results and basically, I'm not doing anything wrong but when you get an early morning phone call telling you to get yourself to the hospital straight away for a heparin shot and you go home with a big bag full of them, it feels like something isn't the way it should be.

[Captain_Birdseye]

I'm so sorry but only your medical team can really answer this - you have a lot of questions specific to something that's going on with you.

We're not medically trained and don't have access to your records. Make an appointment with your GP and go with a list of questions, and you should get the answers you need.

[Pefki in reply to Captain_Birdseye]

I have good medical staff, just wanted to see how everyone with a mechanical valve adjusted to warfarin ups and downs in the early days.

[Yorkshirehead in reply to Pefki]

I have been on 5mg then 3mg, 4mg, 6mg and 2 mg. My INR can be stable for several weeks but then changes for no apparent reason. I would say that, over time, you will learn to trust how you are actually feeling and will worry less about fluctuations.

[Kristin1812 Heart Star]

What a shame and worry for you. You have come through the Op. but now facing a puzzle situation.. Its really good they are keeping a good eye on you, but it must be so worrying.

I hope others who have been through similar will get in touch and give you some ideas or explainations.

I just want to say ‘welcome’ and reassure you that so many of us have been through some kind of difficult and worrying heart events and come out the other side….ready to get on with life.

You will get there!

[Pefki in reply to Kristin1812]

Thank you. Trying to be patient with myself. Hard when I just want to get my life back-you all know how that feels.

[Yorkshirehead]

Pefki, You are doing great! I was 29 when I had my new aortic valve. I’m 70 now and on a road trip round Ireland and doing quite a bit of cycling.

Looking back when I was at your stage of recovery I was very cautious, which I think is only natural. I struggled to trust the professionals but they got me through it.

Very best wishes for a continued good recovery and don’t think twice about coming back to me on anything at all.

Kind regards and keep 😀

[Pefki in reply to Yorkshirehead]

Pleased to hear your story. Would love to hear from others who are around my age who have a similar story to tell. Never wanted to be 'different' going up, not being able to join a sports team was hard when I was a kid, not wanting to go swimming because of my scar from my first surgery as a baby. Don't want to be the sick guy now.

[Pefki in reply to Yorkshirehead]

Can I please ask because you have so much experience and have had your valve since a similar age to me, I have always had a healthy appetite which luckily has returned after about day 10 of surgery and I'd like to know, what is your diet like? 41 years on warfarin, even with the odd fluctuations, means you've found the right formula with your diet. This vitamin K business is really quite confusing-the more you read, the more contradictions you find. I used to love to travel alot. I'd like to do a PhD in the US after I've finished my Masters . I have alot of plans and my new valve can't hold me back. I'm sure you have your own finger prick tester. I'm hoping to eventually get one but the anticoag clinic thinks I am the 1% who can't rely on the finger prick test because it is not accurate in my case.

[Yorkshirehead in reply to Pefki]

My diet is varied and I eat what I like. Having said that I like to think that it is balanced most of the time. Unfortunately I don’t have a finger prick tester so I have appointments with the vampire at my local surgery😀. I hope the Masters is going well.

[Hidden]

I have two 'Mechanical Valves' and I was, in total, in Hospital for 5 Weeks! They inserted a Pacemaker after the Bypass, as the Surgeon wasn't happy, as I apparantly fainted twice after. I can't remember it though! I do remember the Surgeon saying though that with 'Mechanical Valves' it is much harder to get the INR Level stable. I am on Warfarin (for Life) and go to the Clinic nearly every Week. It can be a pain but you are not on your own with this. I am more or less, stable with my INR at the moment, but still have to go to the Clinic on Wednesday! The way I think of it though is that they, the Nurses, are keeping me Safe! 😊 PS: I've had to have those Shots as well!

[Anon2023]

hi. I also have a Mechanical valve and I’m on warfarin for life. My inr bounces all over the place for no apparent reason. I do eat a lot of fruit and veg, but I always have, and my inr changes constantly. The warfarin clinic can’t get to the bottom of it and just adjust my dose weekly. Warfarin is such a sensitive drug it could be anything. I’ve been on warfarin since sept 2021 and although it’s a nuisance it’s keeping me safe. I had a stroke in nov 21 and never wish to repeat it, so warfarin is a necessary evil. I’ve bought my own machine and use it when I go on holiday so warfarin doesn’t really restrict me too much. It’s a pain going to the warfarin clinic every week but it also reassures me. My inr goes up when I’m poorly and when I got endocarditis (with no real symptoms at first) it went to 9 and caused the hospital to start testing me which revealed the endocarditis. I now see my inr testing as an additional way of alerting me to infections etc. the heparin shots sting like mad but they do protect you. Honestly, having had a stroke and endocarditis, taking warfarin every day isn’t a bad alternative Xx