Support Group for Mechanical & Artificial Heart Valve Surgery & Using Warfarin
Taking warfarin does take a while to get used to. To begin with it all seems a little overwhelming with all the things which affect it. I must admit to begin with I used to worry alot and was probably over cautious. Once you get into a routine though taking the pills and monitoring is no big deal. To begin with there were alot of blood tests which did get me down but after a couple of months and on speaking to my consultant I purchased my own self testing kit which has been one of the best decisions. I went to Roche Diagnostics and purchased their Coaguchek XS Kit which is very small rather like a diabetic testing kit. It means I dont have to have venus blood tests regularly , instead you just prick your finger and get a reading.To begin with I callibrated my machine with a venus test as well and found my machine to be within 0.1 degree of accuracy.Roche diagnostics were very helpful when you first start and were always there to offer advice.The advantages of having your own kit is that you have control and you're not tied to the doctors surgery. I can do a finger prick test and simply ring in the results and a nurse will ring back any changes in dosage and leave a message on my answer machine.It also means when you go abroad on holiday you have the reassurance that if you need to you can check your levels.I do callibrate my machine approx every six months when you go for other blood tests but its alot kinder on your veins!!!!
To start with I also worried about bruising and cutting myself because it does take slightly longer for you to stop bleeding.
I would recommend getting a medic alert bracelet or identification which instantly alerts people to the fact you are on warfarin. I feel secure wearing it and you dont really notice you've got it on !!!
You also worry about diet and alcohol to start with but again as long as you are sensible you can have a small glass of wine and you can eat small amounts of green vegetable but dont eat large quantities!
Being a very active person I was also concerned as to how warfarin would effect my sporting life.
I was worried I wouldn't be able to ski or surf or mountain bike but you CAN continue to do these things as long as you're sensible and take a few precautions.
For Skiing- Ski with a helmet which is becoming much more commonplace anyway.
Avoid really crowded pistes.
Stay on the pistes and curb your more adventurous activities such as jumps and trees, just be sensible.
I also wear a small info tag in case of accident which tells people Im on warfarin and I have a mechanical valve, I even had it translated into French. It also has my hospital phone number and consultants name on it.
Keep yourself wrapped up ie Dont go out in a t shirt which you wouldn't do anyway!!!
Always carry a few plasters with you or some plastic skin spray in your pocket.
Cycling Again wear a helmet and take a few plasters with you.
Travelling Abroad- Before going abroad I took my old faithfuls eg aspirin, immodium etc to the pharmacist who advised me as to whether they interfered with warfarin. eg Instead of Aspirin I now use paracetamol .I don't use ibuprofen , instead I use a massage oil etc.
If they do upset warfarin your pharmacist can usually advise you on an alternative.
Just a few tips so you can regain your life and you take control of the warfarin not the other way round.
Dabigatran - Finally a replacement for Warfarin - are we finally nearly there...??!! I think we are.. A LOT of positive press is coming out now with great results for this new drug to replace Warfarin. According to high ranked medical sources it is much better than Warfarin and will be going to full field trails shortly - and we could have approval within the next two years. Here's hoping!
Another good story here: Fingers crossed!
I had my op in Oct 2008 and bought my machine in the March/April2009 after my 3 month check with my consultant. I did discuss self testing with her and she explained and advised on who to contact. I must admit the Roche Diagnostics people were very helpful and gave me lots of information and were also there for support after Id bought my kit. I would add before buying your own do check with your doctor that your area will fund the strips and lancets. Mine did so it just means that when I run out I order on prescription more strips or lancets.I was a little apprehensive at first but our practice nurse helped me through it the first few times until I felt confident.I must confess now it is so easy to do and doesnt affect your life at all. It also gives you piece of mind when you go away on holiday for a few weeks that you can allways test yourself if need be and then ring home your results. I have done this several times from France with ease.
With regards to callibration I did have both venous and self check done together and I now do this every 6 months or when Im asked to have a venous test.So far they have only been out by 0.1 which is pretty impressive.
have a look at Roche diagnostics website at the Coaguchek XS machine.
I had my surgery on May 3, 2010 to replace my ascending aorta with a Dacron graft and the aortic valve with a St. Jude. So I am on Warfarin. My recovery has gone really well and I am feeling "normal" again. I would say that the only real problem I am having is with the Warfarin. At present I am on 5mg/day--I go to the lab weekly and get called with my INR and told whether I should change the dosage or not. Prior to surgery I was told by my surgeon that it would be OK to have a couple of glasses of wine occasionally. I did that one Sunday, tested on Tues, and had an INR of 4.9 (it had been 3.3 the previous week). The wine was the only thing that I can think of that could have caused the 4.9. I have talked to others who say that a couple of glasses of wine shouldn't have made that difference. As far as eating, I've been pretty much staying away from things high on the list of Vit K. I would rather just avoid those foods altogether than eat them daily. How long after you have something like the wine should you expect the change in your INR? How quickly does a change in your Wafarin dosage take affect? I'm hoping that it will get easier when I home test. Any words of advice?
So thankful to have found this group. The information is invaluable, especially when it's coming from first hand experience...not to mention the psychological boost.
I'm so excited that there may possibly be an alternative to warfarin, fingers crossed, fingers crossed.
The discussions in this forum have been helpful to me. I've researched the Coagucheck a bit. The next step is to call them with questions and to check my insurance. All of this in preparation to speak with my Cardiologist, as he was totally opposed to such devices in 2007, when I had my mechanical mitral valve surgery.
It appears that the Coagucheck may be improved technology and accuracy since that time? I'm hoping so and that this may be a real possibility for me. As others have eluded to this could be very freeing and especially with travel.
Wish me luck! and thank you again.