Hi everyone! My name is Luka and I suffered from 2 DVT's in both of my legs. I got first one when I was 12 years old after which I was diagnosed with thrombophilia. Since I was young and stupid I didn't realise how serious was the diagnosis and lived my life as a young person does - wild and careless. In 2013. I got my second DVT which was really a shocker and decided to change some things in my life. Healthy eating, physical activity, regular INR checkups etc.
I am on lifetime Warfarin therapy, wearing compression stockings on both of my legs, attending regular monthly INR checkups in hematology clinic and finding ways to make everyday life on Warfarin as normal as I can.
Few months ago I graduated, and my MA thesis was INR tracking app. I wanted to make something useful that will help other people on warfarin/coumadin anticoagulation therapy. Currently it's in early development phase and when I'll have some more info I will gladly share it with you.
Right now I'm doing research and I would like to know do some of you use any app that helps you overcome problems regarding the warfarin therapy, what features do you find useful and what features are missing. I would like to know if there is even enough interest for this kind of app.
Thank you for your help,
Luka
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lukaperic
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Hi Luka I have been taking Warfarin since Sept 2013 and will be on it for life. I self medicate using a Coaguchek xs to check levels and report back to a nurse at my surgery. For this I use a spreadsheet via email as I am not able to visit the surgery during the week. The sheet records my weekly readings with a formula for monthly average to give a quick view of stability. Should a reading be out of range then I add some comments for potential reasons. I send the sheet to the surgery every month or even longer if everything is ok. I do use an APP to remind me to take my medication daily but I am not convinced an APP for warfarin tracking is a requirement but it would be a nice to have. You mentioned you designed an APP for your MA thesis. Is this available to test and provide feedback to assist with identifying levels of interest?
Thank you for sharing your experience. I also have Coaguchek at home, actually that was the main inspiration in designing my app. I wanted to create a tool that in combination with self-monitoring device such as Coagucheck help patients stay within the specific INR range. In that way I think we can have more time for other stuff and reduce visits to the hematology labs to the minimum.
My app will have reminder for taking medicine and a reminder that warns you when you are runing low on warfarin supply. For example, when you get your bottle that contains 100 pills you add +100 pills to the supply within the app. When you have only 10 pills left the app send you push notification "Hey you should order a new bottle of Warfarin".
The app is still in development, my colegue and I are working on it when we can. As soon as we launch test version of the app we'll be looking for user feedback, so yes we would be thankfull if you can provide us with some comments. I will let you know (and other people on this thread) when the app becomes avaliable for a test ride.
Hey Luka, I am very interested. I have to take Coumadin also for the rest of my life as well as my mom because of protein C and S deficiency respectively. I monitor at home as I have my own machine because I also have a heart condition, but I have an emergency kit with Lovenox, vitamin K,etc. This app sounds great as my mom has to come to me to test at times. Our hematologist is far away. I really don't feel so alone anymore.
I am based in UK and also on lifelong warfarin, I self test using a coagulometer(handheld device) for testing my INR results. I self manage (adjust my dosing) with the consent of my doctor and I record my INR level, dose and date of test along with any notes in an App called Oatbook oatbook.co.uk/
designed by a young techie, Rob Cleaton who is based in the UK.
The app is an electronic record which complements my hard copy anticoagulation book. I show it to all the clinicians I come in contact with and it's a great tool as it can record future appts and contact details of the clinic/doctor
Only available for smartphones at present, I believe.
AntiCoagulation Europe (ACE) is a charity which aims to offer information, education and support to patients who require anticoagulation therapy. ACE wants to promote new technologies and innovations around anticoagulation management, please do get in touch with them via their website anticoagulationeurope.org
I am aware of self-monitoring technique (I have Coagucheck at home), and also of the Oatbook app. It is a nice app and Mr. Rob did a great job but in my opinion it lacks some functionalities that should be implemented. Yes as far as I know the Oatbook is available only on iOS platform.
Thank for pointing out ACE, I believe they have the resources and knowledge regarding this topic and they could be very helpful. I will definitely contact them!
Do you maybe know who can I contact in ACE? I've tried sending them email but the only address I get on the site is admin@anticoagulationeurope.org and I didn't get any reply from them.
Just looked at the Oatbook APP but the reviews are mixed so will hold onto my money for now but the export feature would be useful for communicating with my clinic.
This is my third blood clot I was on warfarin but with all the pain I've been in the pain killers have been effecting my inr levels so I've now changed to rivoxaban.
It works like the tinzaparin but it's a tablet benefits are really good. The risks are there's no antidote on the shelf as yet.
Did You get blood cloths during the flight? I thought that it is safe to fly as long as you don't sit the whole trip (exercises are recommended). Here in Croatia we get heparin (tinzaparin) injections only if our INR drops below the minimum value (in my case 2.0).
If u can let me know when you have developed the app I would be very interested Luka. Sorry to hear you had developed dvts when you were so young. I have bilateral dvts in both my legs. 5 clots. I'm on lifetime warfarin too.
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