Complications, and concerns about my INR

[stilldreamin]

I'm back, again.
I was admitted back into the hospital last week, and sent home again on Friday. I had gone to my family doctors clinic on Tuesday complaining of extreme pain breathing, and a very specific spot under my right breast that was very sharp and shooting. No pain on palpation, although I had hoped it would be muscle pain. That had been going on since the previous Friday. The clinic doctor sent me to Emerg because she was worried about a pulmonary embolism. I was examined and watched for about 6 hours after an EKG and blood work, then they allowed me to go home to sleep, but the following morning I had to go back for more tests. They did a VQ test (a lung scan) which came back inconclusive. They were going to do a CT scan, but I had a reaction to the dye during my catherterization, so they did an ultrasound of my legs, which found no blood clots. They considered doing the CT anyways, but decided against it. They're reasoning was that all it would do is confirm a pulmonary embolism, and the treatment for that was Fragmen (sp? the needles in the tummy) and coumadin, which I'm already on.
However, my INR was 1.5, so they admitted me so they could give me the Fragmen and bring my INR up, and get rid of any possible PE. I was released on Friday with an INR of 2.1, and the pain in my chest, and difficulty breathing was gone.
I was having problems with my pain levels before all this, and was intent on stopping my painkillers.... what I wasn't paying attention to was my inability to get active, and I was getting depressed too. They convinced me to stay on my painkillers until my pain became more manageable... and since I've been home this time I've been able to be more active, and actually managed to get out more and enjoy the nice weather we've been having here. and of course that helps with the depression.
My biggest concern right now is my INR levels. I was released from the hospital after my surgery with an INR of 1.8. They said that was right where they wanted it. I thought it was a bit low, but they said because I had an On-X valve, my INR could be lower. I haven't found anything like that about the On-X valves. I would be more comfortable with my INR between 2.5 and 3.5, just from what I've read and have learned here. I've told them that, and also told them I wanted to increase my coumadin. I'll be talking to my surgeon as soon as I can... he's been away for the past couple weeks... to talk to him about this, since he's the one that apparently said my INR was fine at 1.8.
Any thoughts, suggestions, advice.... would be greatly appreciated.
Thanks so much for listening to me yet again.
jen

 

[pnwcoast]

I don't know nothin about INR but I will keep you in my thoughts and prayers. I'm sure your surgeon can get this fixed up for you.
Getting outside for a short walk, best done on a sunny day if you can find one, watching a funny TV show, having a great meal with loved ones, all things that helped to keep my mind focused on fighting depression. Keep after it.

 

[Ross]

Jen I would settle for nothing less then 2.0. 2 to 3 would be fine. Anything less then 2 is very very close to not being anticoagulated at all. Some day these Doctors will understand some things. The only exception is if your in the TRIAL GROUP!!! The Proact groups:

PROACT Study Drug Therapy Groups

Low risk aortic patients: clopidogrel plus aspirin (81mg/day)
High risk aortic patients: INR of 1.5-2.0 plus aspirin (81mg/day)
Mitral patients: INR of 2.0-2.5 plus aspirin (81mg/day)
Control groups: American Heart Association/American College of Cardiology standards for mechanical heart valves INR 2.0 to 3.0 for aortic without previous incidents, 2.5 to 3.5 Aortic with and Mitral Valves.

Fragamin is not detectable in an INR test. It takes a dose of Coumadin 3 full days to show in a test. I can tell right now that they are NOT GIVING IT ENOUGH TIME to fully show the true picture. What is your total weekly dose of Coumadin at this point?

 

[Karlynn]

I'm so sorry you are having these troubles. I agree with Ross that your doctor is using Trial studies that have not been completed yet to form any long-term official protocol. If you aren't in the trial group, you should be managed as any other aortic valve patient is managed.

 

[Cooker]

Sorry these problems are going on .... prayers for you

 

[stilldreamin]

Thanks for the responses!
I was supposed to be released on 4 MG coumadin, but told them I wanted to take 5 MG a day. That is what they had me on in the hospital to bring my INR up over 2. I'm also taking aspirin. I was only taking 3 MG when I was released after surgery, which had my INR at 1.8, and my family doc increased me to 4MG 5 days before I went back to the hospital, and thats when my INR was at 1.5. (all these numbers are making me dizzy!)
I'm going to have my INR tested today, and I'm going to ask if the lab will call me with the results also... will they do this?
This is only the second On-X valve my surgeon has put in. Would he not have told me if he was putting me in a Trial Group?
Thanks again for your responses.... I'd be so lost and confused without you!
jen

 

[Bina]

Try to keep track of your numbers. Even if it's only jotting them down on the calendar.
I know in the beginning it can be a bit overwhelming, but you will be fine. Breathe. Relax.

 

[Karlynn]

As you continue to recover from your surgery and your body heals, your dose of warfarin will most likely need to go up because you will be metabolizing it more quickly.

 

[Freddie]

Hi Jen, in regards of your question about the lab calling you with your INR results - they may not.
Here in Saskatchewan I have a "Standing Order" for the lab to get my blood work done, also; my doctor gave me permission to phone the lab for my INR results. (I think my doctor had to fax or phone the lab for this request)

I was released with an INR of 1.6 and didn't think anything of it - I didn't know better. And as far as the numbers go.........oh yea it is over whelming - been there.

Don't panic, relax.....it will come, HONEST.

 

[Ross]

I'm going to have my INR tested today, and I'm going to ask if the lab will call me with the results also... will they do this?
This is only the second On-X valve my surgeon has put in. Would he not have told me if he was putting me in a Trial Group?
Thanks again for your responses.... I'd be so lost and confused without you!
jen

They need to tell you those numbers while your there and at the very least, the same day as you were tested. It doesn't matter how many milligrams you take, it only matters that you are in range and apparently, they are not being aggressive enough in getting you to where you need to be. I agree that you should be on 5mg per day for at least one full week before being tested again.

You would have had to sign papers to be part of the trial group, so if you didn't make an agreement with the Doctor, Hospital and On-X, your not part of the PROACT trial.

 

[CThrock]

Hi Jen,
I write all my readings with my INR down in a little book and also my daily doses.
If I have to up or down my doses I write that down too. It's good to keep tract of them because they do change.
When I was sent home with 5 mg a day and had to go up to 7.5 after healing accured. You will find your dosage after a while. I would want to be sent home with anything less then a 2.0.
Let us know what your INR was today, believe me it takes awhile to get it down pat. I still have help from people on the fourm when my INR is whacked.
Keeping you in my prayers.

 

[stilldreamin]

I'm going to start keeping track of my INR and coumadin dosage...great advice, thanks.
I went in to have my blood drawn, but the doctors office won't have the results until tomorrow. I called the lab and they said I would have to have a letter from my doctor to have the results given to me. My doctor is away this week, so I'll have to wait for that. I'll be getting the results of the INR test from one of her collegues.. the one that had sent me to emerg last week thinking I had the embolism. Hopefully I have good results since I've been on the 5 MG since last Wednesday.
Ross, I'm a bit confused about the Fragamin. You said it doesn't show up in the INR test? How does it work then? Is it the same as coumadin? I thought it was just faster acting "blood thinner". And if it takes 3 days for any change in my coumadin to show up in the INR test, how did they know it was ok to release me from the hospital on the 5 MG's? Especially if 4MG's had brought me down to 1.5.
Sorry if I sound so confused... but honestly, I am.
Thank you again for your help, and I'll let you know what my numbers are tomorrow.
jen

 

[Bina]

The INR test is for checking anti-coagulation (anti-clotting) levels from warfarin only.
There are some other meds that also affect your blood platelets only....such as Aspirin and Heparin.
When I was having my OHS they kept me for 16 days because they couldn't get my INR to stay in range, and then after one week at home it ended up sinking a bit anyway. Not to worry, my INR has been great for the past 3 years.

 

[Ross]

I'm going to start keeping track of my INR and coumadin dosage...great advice, thanks.
I went in to have my blood drawn, but the doctors office won't have the results until tomorrow. I called the lab and they said I would have to have a letter from my doctor to have the results given to me. My doctor is away this week, so I'll have to wait for that. I'll be getting the results of the INR test from one of her collegues.. the one that had sent me to emerg last week thinking I had the embolism. Hopefully I have good results since I've been on the 5 MG since last Wednesday.
Ross, I'm a bit confused about the Fragamin. You said it doesn't show up in the INR test? How does it work then? Is it the same as coumadin? I thought it was just faster acting "blood thinner". And if it takes 3 days for any change in my coumadin to show up in the INR test, how did they know it was ok to release me from the hospital on the 5 MG's? Especially if 4MG's had brought me down to 1.5.
Sorry if I sound so confused... but honestly, I am.
Thank you again for your help, and I'll let you know what my numbers are tomorrow.
jen

Jen this is unacceptable. You are the patient and those numbers MUST BE released to you. Getting your results one or two days later is about as good as not getting any at all. How would they know what dose to adjust? It takes 3 full days for a single dose of Warfarin to show in a test, therefor, a full week must pass to present the true picture of your current dose.

Fragamin is Low Molecular Weight Heparin and yes, it does work faster, but it works differently and there is a completely different test used to determine if you have enough of it in your system. Usually, one injection every 12 hours is sufficient, but it's based on your body size and weight. Each injection is only good for about 12 hours of protection.

These things, while they refer to them as blood thinners, do not thin the blood at all, they simply hinder the bloods ability to clot. They really need to call it what it really is and that is an anticoagulant.

 

[stilldreamin]

I wasn't aware that we could get the results for our INR test the same day unless its done in the hospital. I plan on talking to my surgeon about getting set up for the home testing as soon as possible. I'm very confused about all this... am I the only one that has blood drawn one day, and the doctor gets the results the next day and adjusts the dose if needed based on those results?
When I was admitted last week I was getting the Fragamin shots every 12 hours, and they were taking blood every morning. Hopefully that is how they knew if my levels were good.
I'm not feeling very confident about this system. After reading about coumadin and the testing, usually on this site and through links here, I wasn't bothered by the thought of being on it.... but I'm quickly becoming unsure about it all.

 

[CThrock]

Jen,
Don't get to upset we all did not get our own testing machines quickly. I just got mine a couple weeks ago.My surgery was back in 2006. Before then I would go to the protime clinic and they would draw blood and I would get the results the next day. The nurse would call and do the adjusting if needed.
You can check with your dr on testing yourself when you see him next. Don't sweat it about being on warfarin you'll be ok and get use to it in time. It becomes normal routine.
Some due home testing some don't depends on if the person wants too.
We have some on the forum that don't do home testing. Hope that helps.
Crystal

 

[zipper2]

I wasn't aware that we could get the results for our INR test the same day unless its done in the hospital. I plan on talking to my surgeon about getting set up for the home testing as soon as possible. I'm very confused about all this... am I the only one that has blood drawn one day, and the doctor gets the results the next day and adjusts the dose if needed based on those results?
When I was admitted last week I was getting the Fragamin shots every 12 hours, and they were taking blood every morning. Hopefully that is how they knew if my levels were good.
I'm not feeling very confident about this system. After reading about coumadin and the testing, usually on this site and through links here, I wasn't bothered by the thought of being on it.... but I'm quickly becoming unsure about it all.

Glad your surgery is over,and believe me the warfarin end of
it gets better,it really does.We always feel overwhelmed in
the beginning ,so much to take in,but you will be fine and
you have this great team to help with any questions,and don't
overwhelmed,take 1 day at a time.
Took me 16 years before the vampires left me to my own machine
but even that worked alright for me,and i didn't get my inr's for
day or two at times.Ross and everyone do help alot of us out
Thank-God cus even when i was on lovenox,it was new to me 1st
time in 16 years,injecting this stuff and dealing with warfarin.
Don't be frustarated and your not alone we all had to start at
one time,somewhere.
i'm glad your here and will get the help.

zipper2 (DEB)

 

[Eva]

After my surgery for three weeks the nurse used to come twice a week to draw blood in the morning and I received the results by 3 pm! When I started going to my GP's office, I had to wait for a day to get the results. Now, I drive 40 mins. to go to my cardio's office to have it checked with his office machine and get the results right away.

Hopefully I shall receive my machine next week as this is a hassle to me, and the machine will be so handy during travel time.

 

[stilldreamin]

Thanks for moving the thread Ross... feels like a step up to not be in the post surgery forum..
Thanks again for all the words, encouragement, and for sharing your stories. It's nice to be reminded once again that I'm not alone, you've all been through something similar to this. That's what's making this somewhat tolerable. And it's nice to have a group/family to lean on for advice and help. I'd definitely be a mess without you all!
No word yet from the doctors office... but when I hear I'm sure you'll all hear from me. ;-)
jen

 

[Bina]

I remember postop that the coag thing was kind of overwhelming......now I've been home testing for almost 2 years and I don't worry at all.