Helloo =)

[Cris N]

Oops, you're absolutely right. Totally forgot about the age. Sarah, that's a good idea about suggesting that one of your parents on here too - I'm sure they would love to help you get stable. Many of us have found that some doctors and others in the medical profession tend to over react when INR goes outside the recommended range.

 

[ALCapshaw2]

One of the leading reasons for wildly fluctuating INR is OverReaction and Mismanagement by poorly trained (or out of date) anticoagulation managers. I'm not saying this is necessarily the case in your situation but should be evaluated and ruled out.

The BEST results come from patients who Self Test and Self Dose.
It may be time for you to learn more about anticoagulation testing and dosing.
Dosing guides are available on the internet from reliable sources.

You might want to start by reading the "stickys" at the top of the Anti-Coagulation Forum listing.

'AL Capshaw'

 

[Freddie]

Or try this:
http://www.pace-med-apps.com/CoumCalc.htm

 

[nngbwh]

Gonna bookmark this. Thanks for the link. Freddie.

 

[pat45750]

Hi Sarah

Just wanted to welcome you. I am sorry to hear about you having heart problems so early on. I wish you the best and you will find a lot of good information here. Pat

 

[ALCapshaw2]

Another reason for Unstable INR Readings is Changing the Dose Too Often which often results in the famous "Roller Coaster Effect".

Coumadin takes 3 to 4 days to become fully metabolized so 'even if' you are slightly out or your target range, it is best to let the Last Change become stable for 1 (or even 2) weeks before changing dose again.

Testing twice a week is usually only recommended for patients just starting on Coumadin to make sure they are heading in the right direction and not at risk for Bleeding (too high) or Stroke (too low).

'AL Capshaw'

 

[Sarah_Louise]

Hi everyone,
Just wanted to say a massive thank you to all, but today my INR is 1.5, which is far far too low for me, so warfarin obviously isn't working.
Therefore, my heamatologist ect have decided to stop me on the warfarin and go back to injections of tinazaparin heprin, tbh i would have rather they had given me at least another week on it, but i don't want to question my doctors, and my parents agree's with them but i know they are thinking about me, and whilest i've been on the warfarin this last time i've felt like s**t,
Know though im also having problems with my ferattin and iron level so trying to get that sorted outed now,
Thanks again everyone,
You've all been great
Luv Sarah xxxx

 

[Lynlw]

I'm sorry to hear that about your coumadin. I hope you are staying around here. Do you know if your parents have ever joined any online CHD groups or if they've ever wanted to?

 

[ALCapshaw2]

Hi everyone,
Just wanted to say a massive thank you to all, but today my INR is 1.5, which is far far too low for me, so warfarin obviously isn't working.
Therefore, my heamatologist ect have decided to stop me on the warfarin and go back to injections of tinazaparin heprin, tbh i would have rather they had given me at least another week on it, but i don't want to question my doctors, and my parents agree's with them but i know they are thinking about me, and whilest i've been on the warfarin this last time i've felt like s**t,
Know though im also having problems with my ferattin and iron level so trying to get that sorted outed now,
Thanks again everyone,
You've all been great
Luv Sarah xxxx

Did your Hematologist recently advise you to HOLD a dose or two?
It would be helpful to know your Dosing schedule for the past week or two and your measured INR readings.

FYI, HOLDING doses of Coumadin is Notorious for causing INR to Drop Like a Rock.

I'm wondering how long you have been on Coumadin?

Are there dedicated Coumadin Clinic's available in your area?
Next to Home Testing and Self Dosing (after being properly educated and trained),
Dedicated Coumadin Clinics have the next best record for Successful Management of INR.
Results from Individual Medical Providers vary all over the map, depending on how well they have been trained and if they are up to date on the latest thinking / protocols. Providers who were trained before the early 1990's (when the INR technique of measuring / monitoring INR was developed) and who have not kept up with the latest protocols are typically Seriously Out of Date.

'AL Capshaw'

 

[Trinityheart8891]

Hi Sarah!
wanted to say hi, I'm 23 and a fellow ACHD patient (see signature) hope things are going well, feel free to email me if you want!

 

[njean]

Hi Sarah & welcome to the forum!

I hope that you too find strength & comfort in reading our stories of survival.

You have youth on your side and if you need to have this life-saving surgery, then grasp your chance & run with it!

 

[njean]

Hi Sarah & welcome to the forum!

You have youth on your side and if you need to have this life-saving surgery, then grasp your chance & run with it!

I must apologize to you dear Sarah, for mis-reading your post! So sorry.....please forgive this 'old woman'!

I feel so bad that you have been through so much in your young life and continue to have issues that keep you from enjoying your life to the fullest.....as you well deserve!

You say you home test.....do you test once a week or how often & who is managing your results? With an INR reading of 4.4, do you know what your next dose will be or what they (whoever is managing your results) will tell you to take?

I've been on coumadin for 35 years and when I get an INR reading of 4.4 or higher, I will 1/2 the dose for 2 days & then resume my usual dose after that & test in a week. That's what I would do.

I hope that your INR management issues get resolved soon. You shouldn't be having so many problems with this IF it's being handled properly!

 

[njean]

FYI, HOLDING doses of Coumadin is Notorious for causing INR to Drop Like a Rock.

I totally agree w/Al on this one!