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Commented on My Name is Veronica, Co-Founder of INR Tracker, and I have a blood clotting disorder. Ask me anything. almost 5 years ago
Thanks for asking. I've been off Warfaren for almost 3 or 4 months and using a far more expensive medication that works very differently from Warfaren; so far I'm doing really well on it. It's a fixed dose of 10mg per day, administered twice a day in 5mg doses with x5 repeats. Then it's a GP check and if everything's good, another x5 repeats. Like I said, so far it's been very good and much, much simpler to manage than Warfaren. No INR tracking at home, just the regular dosages! But it's like ten times more expensive than Warfaren but for me, well worth the investment. I did read some bad press about the drug, there have been deaths as it's only been released for 7-years or so but decided to go ahead and take the risk. I figured since I was already living with the risk of throwing a clot anyway, I may as well risk trying a medication that if it worked out would liberate me from the tyranny of Warfaren. I was having bad side affects with Warfaren, particularly my skin which had become quite thin, prone to tears and strange, dry patches that would form painful crusts. All this has greatly alleviated on the new drug regime. Thanks again, for asking. I've checked the site and can't locate your backstory. I'm keen to know your story; please feel free to email me on firstname.lastname@example.org - I'd be interested to know how you came to use the INR tracker website.
Commented on Pulmonary Emboli De Novo over 3 years ago
I'm so sad to read of your condition. I'm on anti-coags for life and need to monitor my INR 'til I die. I know how scary blood clots can be - even though medication and diagnosis has come a long way, it's still a guessing game. I know it sounds lame but try not to stress about your condition. I think the body react s badly to too much mental and emotional stress. Be natural, stay cool and 'listen' to your body. Your body will alert you if something's wrong. Drink - I can't stress this enough, drink plenty of water each day. When you wake up ensure the first thing you do is drink a big glass of water. Dehydration makes the veins narrow, when you sleep you dehydrate. So, that's why it's important to drink when you wake up and continue to drink throughout the day to ensure you don't become dehydrated. To check if you are dehydrated an easy way to do is stand in front of a mirror and stick your tongue out. If it's at all in any way white - even just a little - you're dehydrate. I'm sending you all my best vibes and hope you're not too distressed. Stay cool.
It is scary, I know. I have deep vein thrombosis and had massive pulmonary embulisms - basically, there were two big blood clots where there should have been lungs! Anyway, I understand how terrifying living with the danger and physical fallout of blood clots can be. Even when I am stabilised on Warfaren, I still can throw a clot and die as one nurse so eloquently and bluntly put it me. So, there's that constant thought in the back of my mind, every day, all day. It can really do your head in if you let it. Have courage, don't be afraid - find a doctor/doctors you trust and above all, do not go off your medication schedule. I did and now I'm paying the price. On the upside for me, my INR level is slowly dropping so fingers crossed, I'll be okay. But it's not a picnic, I know and don't be frightened. As long as there's life, there's a reason to go on. Live your life, be aware and do what you can do. Don't push yourself. I am physically struggling, to and one year older than yourself. I think after major medical episodes similar to what we've suffered the body takes a while to regain it's equilibrium. Good vibes to you!
I'm not a medical person but am on Warfarin and have dvt and pe. Your blood is v.thick and your symptoms ... g immediately to hospital. Your INR needs to be stabilised and any blood clots identified and treated. Don't panic. Just get to an emergency room.
My story is similar to your although, I'm older. 55-years. I had a pulmonary embulism and dvt episode during February 2015. But looking back at it, I must've lived with clots on my lungs and elsewhere in my body for quite a few months; I was constantly exhausted - even doing the dishes left me breathless, then one day during our summer I decided to walk to the local library. I got there but was taken away by ambulance to hospital. I couldn't breathe - literally. I thought I was dying and in fact I found out I was dangerously close to death. I was in critical heart monitoring for a week. My heart rate would spike even if I was only leaning forward. I'd never felt so alone. Upon release, I wasn't given any information. No information about INR, no information about where or how to go for an INR test. Nothing. In time, I located and bought and INR monitor, the testing strips and got myself onto a Warfaren dosage plan with my local GP. Everything went well for a year or so and I became very lax; stopped my daily walks around the block (although in the back of my mind was the idea I'd throw a clot and die during my walk, when I did walk) and would be slack about taking my medication at the allotted time. I was prescribed 9mg, which seemed to stabilise but when I ran out of 2mg tablets, I dosed myself x3 with 10mg. Then it began; I woke one morning, screaming in pain. The pain in my left calf muscle was excruciating. Never felt anything like it before. No GP available, it was the Christmas break. I waited a day, rested my leg, the pain alleviated but my ankles and toes had disappeared into immense tissue swelling. I rang doctor at home, who told me to go to the hospital. But I didn't; resumed with diliigence my regular dosage at the scheduled time and resumed my walks albeit, slowly and only every second day. My INR reading at it's peak was 6.2, today, dropped to 5.7. Am still taking 9mg that is, up to last night's dosage. My GP is back from holiday and will be 'phoning me later today. But I certainly don't want to return to hospital; they were less than helpful and I was out of there in 8-days. Dumped and left to my own devices. I've had to find out what I've learnt without any help from any professional or allied health agency. I remain concerned about my high INR of 5.7 but am grateful it's at least dropped from 6.2
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