Living with a Mechanical Heart Valve: Click.Tick.Thump. Love It!

Artificial Heart Valve Surgery & Living with Warfarin: UK Info Support Group

PT/INR self testing ☺

Hi everyone.  I had aortic stenosis resulting from an long ago case of scarlet fever.  I had a St Jude mechanical valve installed, in New Westminster BC, in July of 2010.  Since, I have had several complications with bleeding and wacky INR results ranging from way too low (1) to way too high (5.8).  I have been fairly stable for a few months now at ~1.8 to 2.5 on 1 mg of Warfarin, but am told it is still a tad low but they are afraid to raise my Warfarin even slightly as it usually leads to a "runaway"!  lol  I have read up on PT/INR self-testing and am very interested for several reasons, not the least of which being my 16 month ride on the Warfarin roller-coaster.  Are there many reviews by others that use these devices that can help one decide which to get?

 

Thanks for any advice! 

Views: 112

▶ Reply to This

Replies to This Discussion

Permalink Reply by Marina May on November 9, 2011 at 18:43
Oh, and I almost forgot... This is a wonderful site! ♥
Permalink Reply by James Cohen on November 10, 2011 at 15:15

Marina - sorry to hear you are having problems getting stable. 

 

I have been on Warfarin for 6 years, and by and large have been lucky to be stable. I use the Roche Coagucek XS - it is easy to use, albeit it took be a little time to discover how to get the blood out of my finger! (Wash in HOT water, and  then squeeze up from the bottom of your finger to the top a few times.  Pick your finger, count to Ten, and gently push again, and all done).  It appears reliable and I have had no problems. 

 

I have been using it 3 years.  When I needed advice, I ring Roche and they have always been extremely helpful - ring back when they say they would etc.  I am afraid I do not have anything to compare the XS against.  I self test every week.  I am on 6.25mg a day, and find that a change of 0.25mg up or down is all that I need.  It is very important not to chase your INR, and make changes (or test) too often.  I have been told never change more than once a week.

 

Hope that helps a little

 

James

Permalink Reply by Marina May on November 10, 2011 at 15:55

Thank you for the reply James!  That is a lot of Warfarin you are taking!  I take just 1 mg and still go haywire.  I have been getting instructions from my physician to increase or decrease by .5 mg at a time.  I may suggest to my GP that I can split the 1 mg tabs in quarters and try .25 mg variations instead?  I'll leave it to him to decide.  He pouts if I self medicate.  ;)  I will look into the device you suggest.  I like simplicity and it sounds as if it is as simple as taking a glucose reading.  (I have a diabetic cat!)  I will be broaching the subject of self testing with my GP and it helps to know a little beforehand.

 

Thanks again for the advice!

Permalink Reply by James Cohen on November 10, 2011 at 16:06

The Roche XS is exactly the same to ue a glucose readings.

As to the Warfarin, I think yours is a very low dose, but the way I get to 6.25mg is to take 6mg one day and 6.5mg the next.  I have 0.5mg tablets (white) - I would not recommend trying to break 1mg into 4 - I don't think that will work.  My hospital will not support self testing, but my GP helps and self medication is easy - as long as you are sensible.  In the UK some hospitals will support self testing and others will not.  With self testing you can test whenever you think it necessary.  I have only had one bleed (nose) and I took a test and could immediately see I had a high INR (4.5).

Permalink Reply by Mike Mahler on November 11, 2011 at 0:12

WOW!  I guess we are on the oppisite ends of the warfarin spectrum....  I am at 12 mg a day to hold at 3.0 to 3.5.  I guess for one thing, it makes it easy to adjust with the high dose, as a half mg is easy to work out of 12...  I can only imagine how hard it would be on 1 mg.  making changes must be really tough.  Good luck.....

Permalink Reply by Graeme on November 12, 2011 at 17:28

Marina

8 years on warfarin now (since April 2003) It took a long time for mine to settle down as got a bad infection in hospital that necessitated me being on antibis for 6 months after getting my new valve.. but apart from being REALLY careful if I have to take antiibiotics (it sends my INR loopy - went up to 8 last time - big kerfuffle!)  it is farily stable..but my advice on warfarin is pretty much all over this site.. and i agree with James.. I DONT micro manage it.. if it swings up or down between .1-.5 as it sometimes does on an INR test I dont increase or decrease my dosage which is now 7mg per day.. I get tested every 8 weeks at my anti coag clinic .. and to their dismay ignore their machine set dosage if my INR flucutuates by .1-.5 as as it is in my opinion 'chasing your tail'.... as one over helping of spinach on one night or an advocado or a second glass of wine can alter it by this much.. so by and large I test at around an INR of 3... and I DONT change my INR every time i am out a bit on this... hope this helps...

 

cheers

 

Graeme

Permalink Reply by James Barby on November 13, 2011 at 15:15

I also have a Roche Coaguchek, and have had no problems with it.  Initially I struggled to get enough blood out of my finger but I've resolved that using the methods described previously - washing in hot water and squeezing from bottom to top.  The tester cost quite a lot to buy, but it's been worth every penny to me as it gave me my independence.

James

Permalink Reply by Marina May on November 13, 2011 at 17:53

I appreciate the good advice about not "chasing my tail" in micro managing my INR.  The main reason I want to self test is to avoid the long drive into town, as well as to travel again.  I also hate having to wait for others to let me know how I am!  lol  I will be going in to see my GP in a few days and will see whether he agrees with the whole idea.  Fingers crossed!  I find it interesting that many of you take much higher doses than I do.  I guess it is all relative to individual circumstances.

 

Thanks again!

Permalink Reply by James Cohen on November 13, 2011 at 21:30

Marina - go for it.  I think the GP/Hospitals are very slow to recognise that patients want to take responsibility for their own health - and in my case the hospital (who do the actual INR measurement) said in writing that they did not want self testing because they would loss income.  The improvement in standard of living is amazing - no travel, no queues and if you are worried an immediate result.  In the UK a Coaguchek costs about £300 (about US$450) and the test strips (which in my case the NHS pay for) about £5 ($7.50) each. So once you have bought it, it is not that expensive to use.  I am about to go abroad for 6 months, and expect to self test throughout, unless I go out of INR range - in which case I will go to a local hospital for a venous INR test.

 

Good luck

James

▶ Reply to Discussion

RSS

OTHER IMPORTANT LINKS

Join our Facebook Page!

Or: post our Website Link to your Facebook Wall Profile
If you have the QR decode app in your smart camera phone - hold your camera phone over this QR CODE and it will automatically take your smart phone (*if you have the internet enabled on your phone) to our Facebook Page!

OR - Use the QR Code above

What's a QR Code??
Download QR Reader App.

© 2012   Created by Graeme.

Badges  |  Report an Issue  |  Terms of Service

Sign in to chat!