I'm Joanna and I had a replacement mitral valve in 2019. I was so nieve thinking it would be a walk in the park! How wrong I was. Wish I had found this site after my op, but hey I'm here now.
What I'm struggling with the most is blood tests every week, from never being in the doctors all my life apart from the usual hospital check ups to now , my bloods are never stable and the worst is the injection if there too low.
It would be great to hear from anyone going through the same , I know there are worst heart conditions then mine but we are hear all together big or small.
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Lynwood07
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Big warm hello to you from us here in the forum, I hope that you find it as supportive and informative as I and many others do.
I really believe you when you say about the ‘walk in the park thing’, I was thinking the same until the NHS got hold of me, rattled me and took over my life completely.
But I am so great full for that as I can now reply to your first of many posts.
The way I coped {and still do } is to take control as much as possible, ask questions about everything and understand the condition/illness that they were treating {still are} why that tablet? Why that procedure? Etc etc
The biggest part for you to realise is that you are not alone, you don’t have to compare your illness to others that you think may or may not be worse off than you, because yours is so important as it effects every part of your life as you have told us.
Remember to talk about your problems to your medical team and family and tell them how they can help you through this part of your ongoing treatment.
Take care and please keep us informed of your journey and the way we can help you along the way.
Thank you. You are all amazing on here and just wish I found you all earlier. I'm starting to feel quite emotional now reading all your responses. I will stay in touch now I've found you all. X
Hi Lynwood. Glad you’ve found the site. It really does help. I’m on warfarin although now pretty stable. However, I invested in a machine to test my own blood at home to save constant trips to the doctors. I just text my results to my warfarin nurse and she adjusts my medication. It’s from Roche and costs about £300 but has been worth it for me. Your GP may even let you have the test strips on prescription as they are about £80 for 24 so not the cheapest. I only test myself now every 2 weeks - 1 monthHaving said that, 3 years on warfarin and still not stable does seem a little unusual. Can your GP refer you to a warfarin clinic at your hospital? Do you keep a food / drink diary to see what is affecting it? For it to go so low you keep having to have injections must be awful for you. Think you need to have another chat with your GP as to your dosage as they must be getting it wrong.
Thank you, I'm definitely going to infest in a machine, and I will talk to my doctor . I will definitely keep in touch and keep you all updated. I wish I done this before instead of struggling in silence. X
Hello, sorry to hear about your struggles. My husband is on Warfarin for a mechanical Aortic valve and has been for 4 years now. His INR took a while to settle but he’s stable, staying within range. I think his secret is that in addition to all the usual things we’re supposed to do like exercise, eat reasonably healthily, drink alcohol in moderation he includes a portion of leafy green veg like broccoli, kale, cabbage every day, which is in accordance with NHS guidelines. Don’t get me wrong, he’s no angel, but he tries! And I’m the cook in our household - who nags! Vitamin K helps to stabilise INR. If you don’t already do this, perhaps try it, building it up gradually. There was an article in the Daily Mail about a study supporting this approach just this week. And the study can be found on the Internet too. dailymail.co.uk/health/arti...
Also, if you can, home testing is great for monitoring your own INR - much less stressful than constants visits to the Drs although you still have to go to have your machine calibrated, check your technique and review the results. The Coagucheck XS machine costs about £300 and in England GPs are supposed to prescribe the test strips. Finger prickers are cheap to buy. The NICE guidelines support this approach. You can read up about it on the NICE website or by typing “ nice home testing warfarin INR” into your internet browser. Be sure just to look at NICE, NHS and UK hospital websites though as you’ll get lots of articles come up.
Have you seen the information sheets about warfarin on the AF website - they’re useful too. Here’s the link
Thank you so much for your message. Mine also is a mechanical valve, the ticking took some getting use to.I try and do what you've mentioned, I exercise 3x a week keep my alcohol to a reasonable amount and generally don't drink in the week. I've thought about getting a machine but never knew which one to purchase so thank you again for the one you've mentioned. Some days and weeks are better than others. I will definitely look at all the links you've sent me. I just wish I had found this page alot earlier. Xx
Hi. I had my first mitral valve replacement in sept 2021 then a redo in jan 2022. The ticking of the valve drives me crazy!! My warfarin was never stable until 6 weeks ago as I was on antibiotics etc. warfarin is a selfish drug and doesn’t like other meds!I’ve bought a machine but quite like the reassurance given by the warfarin team. Williams medical sell the Roche coaguchek machine for £299. In the last 9 months I’ve been in hospital more than I’ve been out, with a 2 month stint over Xmas and new year. Anyway as traumatic as that was things have slowly improved. My warfarin is stable, I can walk miles each day and, at last, I’m infection free. I’m on the list to have counselling to help me come to terms with my health problems and accept what has happened. If you can get a referral you might benefit from it. I’m really trying to focus upon what I can do rather than what I’ve lost but it isn’t easy. What you are feeling is totally normal after what you have been through. Just keep seeking support and know that you are not alone. This forum is full of lovely people. X ps hope you are having your tinzaparin injections in your tummy. I found it much less painful than having them in my arms.
Hi, there may be good medical reasons why you are on warfarin. I was on warfarin for five years and remember only too well the constant fluctuations, incessant blood testing, and changes of meds trying to keep the level stable. A couple of years ago I was put onto apixaban. Oh my word, what a difference. One pill morning and evening, the same dose since I started, rock steady levels and best of all, a blood test only twice a year. I was looking like a worn out pin cushion before. The fact that my blood is difficult to take didn't help. Anyway, my point, such as it is. Perhaps it is worth having a word with your consultant and checking if it is possible to put you on another anti-coagulent. I know that there is a cost issue involved, but taking everything into account with the constant monitoring, taking blood samples etc. it probably balances out. Apart from putting the patient first of course. Good luck.
Hi Raznic, yep, I found the same. My pet horror was daily aspirin. I was switched to apixaban after all sorts of nasty problems emerged. Problems are now solved. I think the cost of apixaban was prohibitive to begin with and possibly therefore a factor in consultants willing to prescribe it. Aspirin is dirt cheap. However, I believe the cost has now dropped (for the NHS) and so it's becoming more evident on prescriptions.Certainly apixaban seems recommended over warfarin from conversations I've overheard in hospital clinics!
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