How low did you go?

[Johnny Stephens]

I'm exactly 3 months post-op, and went in for my Protime / INR test this morning and threw a 1.6! This is the third test in a row where my trend has been downward.

The anticoagulation pharmacist has been very slowly adjusting my dose upward during this time. During early recovery, I had been at 2.5 mg daily. She has adjusted my dose by doubling one-day's dose at a time, to where I now take 5 mg on MWF, and 2.5 the other four days. She has also decided to test me next week instead of waiting the usual 2 weeks.

Being the paranoid hypochondriac that I am, I'm now very anxious about this. She has assured me that we will find the correct dose but cannot make too large of a jump at a time or we will wind up "chasing our tails" and never get it right. She also believes that my extended recovery time has lengthened this process somewhat as I went from being inactive and not eating back to my normal activity level and a more normal food intake.

This has turned out to be more of a vent than I intended, my apologies for that.

I'd be interested in hearing from those who have had scary-low numbers for INR at some point during their dosage adjustment.

Johnny

 

[RobThatsMe]

Hi Johnny,

I remember back when they were first trying to stablize me. I started at 2.5 mg of Coumadin per day. As I became more active, (metabolizing more Coumadin through my system), they had me go up to 5 mg per day, except for Fridays and Mondays. After some more time, I finally stabilized at 5 mg per day 7 days a week.


That's it. I now make minor adjustments as necessary based on the results of my home testing Protime unit.


Hope you get your INR back up over 2.0 soon.

Good luck,
Rob

 

[Blanche]

Johnny:

You might benefit from a second opinion from your cardiologist. After 3 months, INR=1.6 is to too low. Most people here and my husbands doctors would prefer that the INR be higher than low.
I would suggest that you call your cardio get his/her opinion and ask for a detailed explanation. I know that this is a hard thing to do.

You might also send an email to Al Lodwick who is so helpful to everyone here when they have anticoagulation concerns. His email is [email protected]. There's also a wealth of information on his website which is warfarinfo.com.

Let's hope the new dosage resolves this quickly.

 

[weekycat]

Hi Johnny,

I know they had a hard time getting my INR up there in the hospital, the first time it was 1.1, which was one reason I spent 8 days there. I think it was like 1.8 when I left there.

But now I've been worried about mine being too high! My INR is supposed to be in the 1.8-2.5 range, (mitral valve repair), it had been exactly 2.5 until two weeks ago when it went to 3.0. They figured that was because of some other medication I'd been on, so I was told to keep taking 5mg. per day, as I had been, and to come back in 2 weeks. Well tomorrow will be two weeks, but I've got so many bruises on my body that I look like I've been beat! I showed them to the Cardiac Rehab people, and they said just to watch them, but I'm curious as to what the numbers will be tomorrow.

The thing is, with my situation, by the time they get this all figured out, I'll be done with it. I only have to be on it for 8 weeks and this will be week number 7. I won't miss it!! Jean

 

[Christina]

Hey Johnnie,

I threw a blood clot at 1.4 (it lodged underneath the new valve) and the surgery needed to be redone. I can tell you that was no fun!
You should get yourself a protime machine and not rely on going to the lab. You need to test often and your dosage needs to be increased.
Not everyone knows how to regulate Coumadin. I finally got lucky last year and since then it's been a breeze.
Exercise will lower the INR and that is only logic because as time progresses we'll start feeling better and better and will exercise longer and more. Your dosage needs to be increased pronto before you'll be in trouble and I would not wait for the nurse to give you permission. You are taking a tremendous risk here, and by not increasing your dosage quickly enough so your INR can get up to where it should be, she is putting your life in danger in the mean time.
Before I had my protime machine and a new doctor I was a nervous wreck every week because the INR was always low. It scared me half to death because I certainly didn't need a 3rd surgery.
Now I am not so scared anymore. I keep a close eye on my INR and test often, because many things interfere.

Wishing you the best.

Christina
AVR's 8/7/00 & 8/18/00
Aortic Stenosis
TMC, Tucson. AZ
Dr. Gulshan Sethi

 

[ALCapshaw]

Johnny,

Did you receive the Private Message I sent to you?

'AL'

 

[Johnny Stephens]

Thanks all

Blanche, I've already sent off an email to my cardiologist outlining the trend and asking for his opinion.

Christina, yes, the 1.6 scared me when I heard it...I immediately thought of your re-op saga. This is doubly scary for me as my first operation almost did me in, and I conceivably would not survive a re-op so soon.

On a positive note, the Anticoagulation pharmacist works with many patients who do their own testing and said she'd be happy to dose me when I do my own testing. I'll be using recent events to strengthen my case with my insurance, but in the end I'll buy my own Protime whether covered or not.

Thanks all for the input....

 

[Johnny Stephens]

Al, yes I got your message, but only now replied. Sorry for the delay and thanks for the info!

 

[Johnny Stephens]

Well, my cardiologist called me back tonight and was in complete agreement with me that the Coumadin clinic is not treating me agressively enough. He instructed me to go 5 mg per day going forward, and he would fix it with the clinic. Their plan would have taken 2 more weeks to get to that level. I feel lots better about this now.

Apparently, this is a new pharmacist that has been given no wiggle room in the protocol. She would not budge even after I called back and pressed her hard.

I love my cardio. His quote on the low INR: "It is possible to run across the freeway quite a number of times before you get hit."

I have a feeling that I will have a lot of leverage when I ask him to prescribe a Protime unit for me at my followup visit Thursday.

Thanks for listening

 

[Granbonny]

INR'S

INR'S

Johnny, I think I am about 3 weeks ahead of you post-op..I have been on 5Mg. Mon-Fri. and 2and a half Sat. and Sunday for a long time...However, when I went in a week ago for my 3 mo. checkup I was so stressed out..Wrong time, ect. and asked my nurse to do a Protime. It was 2.0.. It has been running 2.6. 2.7 2.8 ect. all under 3.0 point. Of course, I am in the 2.5-3.5 range. She told me to take a 5 mg. on Sat. now I did..INR was 3.6 today. I have my own Protime...I called her and she said to continue my dosage. Mon-Sat. 5 mg. and a half on Sunday Will test again next week. Love this Protime..It's takes so much to get regulated. I am walking a lot..I sit by the pool..just little things that may throw it off..but someday I think we will both find our dosage. Bonnie

 

[MarkU]

I was doing great for about six months and was always in the 2.6 - 2.7 range. Then I went on vacation for two weeks in early June and I've been yo-yoing between 2.2 and 3.9 for the last month. I'm on 5mg per day and they think that as I get back into my "normal" routine things should stabilize without having to tweak my dosage too much.

Mark

 

[ILoVeNY25]

Low reading yesterday...

Low reading yesterday...

Hi Johnny, Just wanted to share with you, I got my results back yesterday and I'm at 1.8! Doubling my dose for the next few days. I don't know if it has anything to do with the cold I have or the fact we had a family reunion and I was entertaining cousins of mine...Had a couple drinks this weekend, First time I've drank since surgery. I did have low readings 1.5, 1.7 and 1.8, 2 weeks after surgery and I was doing so well until yesterday. I feel your frustration! Hopefully the changes in dose will bring us into range. Good luck, Let us know what your next results are. Take Care!

 

[Granbonny]

Dosage

Dosage

Nicole, My INR was 2.0 when I went for 3 month checkup last week. We added 1 5mg. on Sat.(was taking 1/2) and my INR went up to 3.1 in one week from just an extra half.I might add that was the lowest it has been..STRESS..Wrong time for appt. Their fault..traffic, I live in the quiet North Georgia Mountains...and thank goodness for my own Protime..Don't have to go down to clinic anymore. Bonnie

 

[Granbonny]

Mistake

Mistake

I made a mistake 3 posts up when I said my INR went to 3.6...I meant to say 3.1 by adding just 1 5mg. instead of 1/2 of 5 mg.

 

[ILoVeNY25]

Lucky Bonnie

Lucky Bonnie

Hi Bonnie, I'm waiting to hear back from QAS about my own protime machine. The first request I sent was from my cardio and they needed it from my pcp. He sent the papers in and they should be covering it 100%. So, We'll have to wait and see. I can't wait to get my own. Always traffic going to my pcp for testing When I do get it, trust me I will have many questions for you and everyone else who self-tests.

 

[Granbonny]

Will be glad to help

Will be glad to help

Nicole, I will be so glad to help you but you really need your Mom or Dad to start off with you..One to operate machine in a good light..You to get your finger ready to prick..takes a lot of rubbing and warm water, ect...Then it goes into machine on top of Cuvette and you have 6 seconds to remove it..Kindda nerve racking at first..but we have only wasted 3 so far.. More to you when you get it..Chat later, Bonnie

 

[Greg T]

Hey Bonnie:

It is nice to see that someone else has "wasted" a few cuvettes! Sometimes I just can't bleed fast enough from that little cut. Oh Well, home testing is still the best

Greg T

 

[Granbonny]

Hints for a bleedingfinger

Hints for a bleedingfinger

Hold the lasette as tight as you can up against your finger..Hold a warm cup..warm fingers in warm water..rub, rub, rub you finger to be pricked and always hold your hand down below your breast bone before you prick. I messed uo when I had to do my demo at Card's office...but she told me she has trouble too and has to take patients inbathroom and run warm water over their finger.

 

[Zipper]

Well....I have wasted some,too...in the beginning. I've got it down now, tho.;-)

I have no trouble with the drops flowing easily, tho. Maybe someone knows more on this...But I understand it is important to be well hydrated for easier blood draw. Even in a fasting blood draw, it's easier if you drink water within the fasting time. Anyway that's what the Lab Tech at work said. Maybe the same for finger stick. Could it be summer heat plays a role and you are less hydrated??

Just a thought...others may know more..

Zipper *~*

 

[SHerrin Hutt]

Hi Johnnny,
I too! Have had all kinds of problems with my inr. Since 3/02 it has went from 1.2-6.4 slmost every week it has when up and down. There has only been two weeks since surgery that it was in the 2.5-3.5 range. I was in Boston this last week visiting my daughter. I fell on the beach and ened up with two great big brusies on my legs. I had to go to the hospital where my daughter is a nurse and have my inr checked twice. I have been on antibobic for an abess-tooth for two weeks. My daughter that is a nurse seems to think it effects the level. Has anyone heard of this. My cardiologist wants me to go in the hospital to have the tooth taken out. Because I am high risk, because I have had two stokes and repalcement mitri-valve and a blood clot to! This new valve is messing up my blood too! I have had trrouble with my blood count and my iron. I have had three Iron infusion this last month. I still am really tired. Is there anyone out there having the same problems. Please, let me know. Thanks, for any infor. or help. sherrin Hutt