Pulmonary Embolism Support Group
By far the most common form of pulmonary embolism is a thromboembolism, which occurs when a blood clot, generally a venous thrombus, becomes dislodged from its site of formation and embolizes to the arterial blood supply of one of the lungs. Symptoms may include difficulty breathing, pain during breathing, and more rarely circulatory instability and death.
So my doc was out of town last week, so the other doctor in her office and the PA (neither of whom I've met) have been managing my INR. I'm still testing 2-3 times a week since I haven't stabilized since my surgery in November and my Ear, Nose, and Throat doc keeps switching up my antibiotics and other meds.
Anyway, so I was up to 3.6 last week. They had me hold a day and retest the next morning. I was at 3.3 then and they wanted me to hold another day and then go back to my regular dose of 6mg. Retesting on Wednesday five days later.
The last time I held two days in a row, I dropped almost 3 points (from 4.8 to 1.9) in two days. Of course, this didn't occur to me until Friday night, hours after I talked to the doc and when I was going over the INR plan for the weekend with my husband.
So, I was naughty ... I didn't do what the doctor said.
I didn't hold the second day. Instead just dropped my dose to 5mg. Tested this morning and I was at 2.6, which is just perfect and I'm feeling a little smug about managing my INR well myself. Of course, we'll see how the rest of the week goes, since I dropped another med on Monday which has been knocking my INR up.
Anyway ... anyone else out there ever go "rogue" and just start doing things their own way? Honestly, I'm usually 100% behind following doctor's orders and being a "nice" patient, but it kind of depends on whether you trust the doctor. In this case, I didn't (since they weren't familiar with me) and it came out OK, but I'm trying to keep myself from just getting too cocky and trying to do it all myself.
Thoughts?
Anyway, so I was up to 3.6 last week. They had me hold a day and retest the next morning. I was at 3.3 then and they wanted me to hold another day and then go back to my regular dose of 6mg. Retesting on Wednesday five days later.
The last time I held two days in a row, I dropped almost 3 points (from 4.8 to 1.9) in two days. Of course, this didn't occur to me until Friday night, hours after I talked to the doc and when I was going over the INR plan for the weekend with my husband.
So, I was naughty ... I didn't do what the doctor said.
I didn't hold the second day. Instead just dropped my dose to 5mg. Tested this morning and I was at 2.6, which is just perfect and I'm feeling a little smug about managing my INR well myself. Of course, we'll see how the rest of the week goes, since I dropped another med on Monday which has been knocking my INR up.
Anyway ... anyone else out there ever go "rogue" and just start doing things their own way? Honestly, I'm usually 100% behind following doctor's orders and being a "nice" patient, but it kind of depends on whether you trust the doctor. In this case, I didn't (since they weren't familiar with me) and it came out OK, but I'm trying to keep myself from just getting too cocky and trying to do it all myself.
Thoughts?
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Look at what my best friend did with my picture!
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We all have 24 hours in a day. How we spend these hours is important. Watching a little bit of a video about how sitting affects us made me aware of how much sitting and laying down I do. Gonna have to work on that.Your turn. Tell me another truth.
Also, I am not sure about the rest of you, but my INR nurse seems to know little to nothing in general about Coumadin. Which scares the crap out of me since she works specifically and only in what is called The Coumadin Clinic!!!! I asked her about a symptom I was having (sharp pains throughout the body) since I had been on Coumadin and if it was a regular symptom and she had to pull out her medicinal book to look up possible side effects of Coumadin. What?!?! If there is any drug you should know like the back of your hand working in that clinic, it would be Coumadin!
Kudos to you TossNTurn!
My PCP is the prescribing authority. I've been stable as of late and so usually I just test and fax the results without incident.
When I do go astray it is always spikes on the high side. It takes 2 days of phone tag to get approval to go down a tad for a day, so often I eat a can of spinach (about a week's RDA of vitamin K) or, more recently, go down 33.3% on my own under the pretext that I tested over the weekend and advisement was unavailable. When I do check ahead and get approval, it is more like "here's what I'm gonna do, ok?" and there are no objections.
Nice to know I have company out there on "going rogue."
KS
My doctor has given me some work sheets that show the algorithm used to figure out dosage and testing frequency - she wants me to get to the point where I find out my own INR and report to HER what I am doing instead of the other way around. I may get a home tester, but I am lucky enough to work for a large research organization with two health centers on campus that will draw my blood, send it for testing, then report the result to both me and my doc. So for now, I'm using this approach.
Chris