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CA Pigg

CA Pigg

Well-known member
Joined
Feb 8, 2009
Messages
290
Location
Alabama
Well saw the suregon I'm not too happy and will find out more next Friday. I had to get all kinds of tests which is good but they didn't tell me about it so was quite a crazy. He said that my heart is looking good but it not functioning the way he would like and he wants to monitor me until it does, this is the first time he has said anything like this!! WHen I was getting my echo done he had to leave and told me to come back in 2 weeks and talk to his assistant who I don't care for very much! When i went to make 2 week appointment they said he won't be here he is leaving after next friday for vacation until May 15, so I go back coming up Friday! Anyways on the arm/shoulder he said was probably stretched nerves from surgery and gave me an antidepressant to take (he said not because I'm depressed but because it is found to work on nerve situations) I take one at night time.. The chest xray showed my lungs good but the fluid still around them and my tummy still all swollen so he gave me more lasix and potassium.. I had an ekg as well, Now i don't know what he meant by the heart not functioning like it should and didn't get results from todays echo since he had to leave so I should find out all of that Friday..... He was concerned with my INR which was 1.1 today.. He was pleased that you all had told me about the levonox and I was on that.... (THANKS)
The INR coumadin clinic called me, actually she called last night being all nice and seeming concerned, yep, I know someone talked to her. Get this they said since I went down a little they want me to take 4mg tonight then go in the morning and get a test and then they will call me tomorrow to tell me what to take! I've got a feleling this will make me go up and of course testing again tomorrow isn't going to show the coumadin from tonight, I took 2mg last night. I don't think they know very much but they are the ones who are supposed to regulate me and have it down on what they have me taking so I'll have to tell them if I don't take the 4 mg and just do 2mg. I'll be happy when I'm doing it all myself of course with the help OF ALL YOU GREAT PEOPLE!!!!! But I would rather be high than low and this 1.1 is not good, like I said THANK YOU for telling me about the levonox!!!! It makes me feel so much better knowing I'm ok....They are unreal arent' they!!!
 
I hope you get better news Friday. Your coumadin dosage still seems low to me even at 4mg. Keep on them about this. Just relax & try to have a good weekend. God Bless. :D
 
Lovenox

Lovenox

Lovenox is supposed to be administered twice a day. When hubby was in hospital, the doctor said that because I was wary of sticking the needle in my dear one's stomach, he could just take it once a day. That's when we got another doctor.

Al said he would inject himself. As it turns out, because there were other concerns, they just kept him in hospital...with a new doctor.

Hope they get this resolved for you very soon.

Blanche
 
Thanks for the report Carole -

My recommendation for the Fluid in your chest is to keep 'pushing' as hard and long as you can on the Incentive Spirometer every couple of hours.

It sounds like your Coumadin Clinic Nurse is "running scared". Unfortunately, testing in only 1 day is WORSE than useless.... If she makes a Dose Change based on that number, it can lead to INR Overshoot BIGTIME.
Strike 2.

Out of curiosity, which "assistant" were you refering to?

So, what did Dr. Mc think of your "internet advisors"? :)

Did you ever get an appointment with a Hematologist?
If your insurance would cover the Genetic Testing for Coumadin sensitivity, I think that would be a useful piece of information for understanding and guiding your anticoagulation management.

'AL Capshaw'
 
Hi Carole, was just wondering what Lovenox was, it is something we must use over here but call it a different name.
Your INR is very low again, but your dosage seems very low i take 11mg everyday and my level over the last month has stayed at 2.6, i know you had many problems with INR levels when you were in hospital i was reading your threads.
Hopefully when you go next Friday you will find out more whats going on.
Take care im thinking of you
Jane
 
So sorry that all of this is still so frustrating for you.

Telling you to take 4 tonight and then testing you tomorrow is going to give them absolutely no information on what the 4 mg has done. This is like a cat chasing it's own tail. They need to give a dose schedule for at least 3 days and then test.

I'm having a hard time remembering - how many days have you taken 2 mg? If it's been 3 days and you're still 1.1, I'd be tempted to do 4/day and test on Monday (if I were a manager - I'm not telling you to do this.) Right now it seems like something really hinky was going on while you were in the hospital with something affecting your INR. Now it's causing them to be super cautious with your dosing, and understandably so. But this business of giving you a dose instruction for 1 day and then testing you the next day will give them as much usable information as an empty dictionary.
 
ALCapshaw2 said:
Thanks for the report Carole -

My recommendation for the Fluid in your chest is to keep 'pushing' as hard and long as you can on the Incentive Spirometer every couple of hours.

It sounds like your Coumadin Clinic Nurse is "running scared". Unfortunately, testing in only 1 day is WORSE than useless.... If she makes a Dose Change based on that number, it can lead to INR Overshoot BIGTIME.
Strike 2.

Out of curiosity, which "assistant" were you refering to?

So, what did Dr. Mc think of your "internet advisors"? :)

Did you ever get an appointment with a Hematologist?
If your insurance would cover the Genetic Testing for Coumadin sensitivity, I think that would be a useful piece of information for understanding and guiding your anticoagulation management.

'AL Capshaw'
Click to expand...


Yeah, I agree with you on the coumadin nurse. I like the cardiologist nurse and the coumadin people are part of the heart doctor so it is weird, such a difference in people!!

I can't remember his assistants name but he is from London, he just was rushing and on my tummy still being very pouched he said well you quit smoking right, which I haven't been eating enough for that and it swelled in the hospital, so I told him and Dr Mc G told me and showed me the fluid around the lungs and said that is why he thinks my back is doing that.
Dr.McG liked that I was aware from you all and that you had suggested the Lovenox and he was happy I had you all and had listened!!!! I'm so Thankful for you all!!!!

I'm going to eat and I'll check back later!!!!:D
 
I wonder if it was possible, they doub;e dosed you on Coumadin in the Hospital and that is why you had the big spike
 
I took the 4 mg. I know they are screwed up and they are testing way too soon, but I do want my INR to go up!!! I hate being this low, 1.1.... I know I won't be able to see until next week on a true reading. Oh I only took 2mg for one night, before that she had me taking 1/2 mg. I'm afraid I'm going to spike, I guess we shall see!!!! I'm might lower it tomorrow myself and just take 2mg, I'll tell them when they call what I think. They don't listen too well!!!!!!! Remember, I'm supposed to "Trust Her", I think yeah RIGHT, DON"T THINK SO!!!!!!
 
I agree with Karlynn. I think something crazy happened in the hospital. Now your tests make sense - you're taking almost nothing and your blood test shows almost nothing. Testing tomorrow is useless and could end up causing more problems. If it was me, I'd "forget" to show up tomorrow, take 4 mg a day today through your next test and test on Monday or Tuesday. I'm still betting that you'll end up on a normal dose and nobody will ever know why you were so screwed up in the hospital.
 
Freddie said:
Hey Carole, you say you will get more information next Friday....isn't next Friday Good Friday? Will you still be able to get results?
Click to expand...

They told me to be there in the morning so I hope he is there because then he is going to Paris until May 15th, so I'll be screwed :(

In the hospital I found out they gave me 5mg 2 days, 10 mg one day, then 2.5mg, then I had the big Spike!! I'm thinking the 10 mg did it, Maybe..... Does coumadin give anyone indegestion???? I haven't had it but last night and tonight I have???

I'm not going to let them up me anymore than the 4mg tomorrow and Sunday night. The test Monday should be more accurate I'm thinking? I did get my home tester YEAH!!! SO, after I get regulated, I can jsut do it myself... I they don't get it straight soon, I'll just have to regulate myself, I don't have any confidence in them at all!!! I'm hopin the meds he gave me for the shoulder/arm work and I actually get to sleep tonight.. The no sleep is really starting to get to me, making me very Wenchy:( I don't like feeling like that at all!!!! Hopefully I'll get straightened out soon and I can be nice again:)
 
Okay, that proves it! They definitely mismanaged your Warfarin in the hospital! Why in hell would they double the dose after only 2 days, and then quarter it? Were they trying to kill you? I hope I never end up in that hospital, I don't care what kind of reputation it has.
 
It's no wonder your INR has gone up and down like a rollercoaster since that is exactly what they were doing with your dosing. Without taking a consistent dose for several days in a row, there is No Way they can know what is your Stable Dose.

Early on, without Genetic Testing, it is a 'cut and try' approach to get stabilized. Personally, I would think the Best Solution would to be to take a FIXED dose for several days (say 2 mg Fri, Sat, Sun, Mon, then Test to see where you are on Mon or Tues and again on Friday (due to the Holiday and Vacation schedule).

This may be an ultra conservative approach, but will hopefully avoid another Spike in INR *and* you will be protected by the Lovenox. (If you don't mind telling us, what dose of Lovenox are you taking and .... how much do you weigh? .... The dose is based on Body Weight...)

'AL Capshaw'
 
Even with the messed up dosing in the hospital, it still doesn't explain the higher INR after Carole having no warfarin in 6 (?) days.

Carole - not to throw a wrench in this, but did you check the meds the Dr. gave you for your shoulder to see if it has any warfarin interactions?

Glad you got your home machine!
 
Karlynn's had her coffee I see.

I was going to ask what meds he put you on to check to see what it might do to your INR.

Carole, don't let them test you so soon. Demand that they wait at least 4 days on one steady dose. Preferably one week. At the rate their going, they won't be able to establish what dose is the right one. They're testing too quickly and changing the dose too quickly.

I truly believe your hospital really screwed the pooch. I don't buy that you have a warfarin sensitivity as they indicated. I'm betting your going to be as normal as the rest of us, taking around 35mg a week to keep you in range.
 
I agree with Ross. I think they gave you one or more "loading doses" which don't work for Warfarin (Coumadin). The only way to bring INRs up is slow and steady.

Too many insurance companies want to get patients out of the hospital before they are therapeutic, and exert pressure to use larger doses to get it up fast.

Of course, I am only guessing, but you aren't having the same problem now. Now it's too low.

I think they made up some kind of silly story to cover their poor care.
 
ALCapshaw2 said:
It's no wonder your INR has gone up and down like a rollercoaster since that is exactly what they were doing with your dosing. Without taking a consistent dose for several days in a row, there is No Way they can know what is your Stable Dose.

Early on, without Genetic Testing, it is a 'cut and try' approach to get stabilized. Personally, I would think the Best Solution would to be to take a FIXED dose for several days (say 2 mg Fri, Sat, Sun, Mon, then Test to see where you are on Mon or Tues and again on Friday (due to the Holiday and Vacation schedule).

This may be an ultra conservative approach, but will hopefully avoid another Spike in INR *and* you will be protected by the Lovenox. (If you don't mind telling us, what dose of Lovenox are you taking and .... how much do you weigh? .... The dose is based on Body Weight...)

'AL Capshaw'
Click to expand...

I weigh 109 pounds right now, I was at 102 before surgery and still have that pouch I'm hoping is going to go away!!! ANyways they have me taking 50 mg or 0.5ml twice a day... Of course I had to get tested today which was a waste I know but I listened and when she called this afternoon it was still 1.1 of course. So she told me to take 4mgs again tonight then 2 mgs sunday night and I test again Monday. So she had me taking 1/2 mg for 4 nights then 2 mgs for one night, now 4 mgs for two nights and then 2mg for one night and get tested!!!! I think she should stick with the 2 or 4 or I dont see how they will know which is working with them changing it. I have my home tester now haven't used it yet of course since I'm being tested practically dailiy now! At leaset Monday when I go the first 2mg from Thursday night should be registering right?? I sure appreciate all the help from you all... Is the Lovenox the right doseage????? I really love the nurse telling me to take the lovenox shots twice a day when she is the one who didn't even tell me about it and was going to have me come back Monday! Now I know they are doing overkill testing but I really wanted to say something very ugly to her but bit my tongue!!!!!

They gave me flexeril for the shoulder at base and then the surgeon yesterday gave me an antidepressant for the shoulder, he said he thought it was stretched nerves from the operation and this seems to help people, it is called amitriptylin 25mg and I am to take it 1 time a day at bedtime. I am taking Loratab for pain, metoprolol 25 mg twice a day for blood pressure, lasix 1 time a day, potassium 1 time a day, iron 3 times a day, colace 3 times a day and there is my pill list. I'll be glad when I don't have to take it all!!!!!
 
YEP, I agree, it would be best to take a consistent dose for several days, then be tested to see that you are not spiking. I would then ask to continue with that same dose for a total of 6 or 7 days and test again which should hopefully establish a baseline. THEN they could adjust your dose to move in the right direction. You will need to get your Dosing Schedule approved by your Clinic. Note that AL Lodwick's dosing chart recommends an increase of 15 to 20% in the weekly dose if your INR is (still) under 2.0.

Because of your 'possible' sensitivity to Coumadin,
I made a very conservative suggestion of sticking with 2 mg/day for 4 days, test, if INR has not spiked, continue 2 mg for the week and retest on Thurs/Friday. THEN readjust. I know this is Very Conservative, but as I said, the Lovenox will keep you from clotting and the Low Dose will hopefully keep you from spiking. Once you have a 1 week baseline, your Clinic can adjust from there. I expect there are some who may not agree with this conservative approach. With the wild fluctions in dosing you have received, I think it's impossible to know for sure if you are super-sensitive to Coumadin or not. One week at a constant level should give you and your Medical Providers a better picture of your sensitivity.

Have you read any of AL Lodwick's website, www.warfarinfo.com?
He sells a Dosing Guide for $5 which is the Best $5 you could spend on your continuing AntiCoagulation Care.

Yes, 50 mg of Lovenox is the Correct Dose for 110 lbs.
(usually expressed as 100 mg per kilogram which=220 lbs.)

I think it is fair to say that your situation goes beyond the expertise and experience of your Coumadin Clinic Nurse :-(

FYI, Loading Doses have been shown to cause overshooting and instability which takes even longer to settle out (as you have seen!). Many Clinics have gone to the philosophy of "Slow and Steady Wins the Race".

Recovery from OHS takes TIME and Patience, that's just the way it is...
 
Personally, I would stick with the 4mg until at least Monday JMO.

As for pain, Carole have you tried Tylenol Arthritis? Yea I know you don't have arthritis, nor do I, but I find its works a lot better than regular Tylenol or the Extra Strength.
 
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