Merryreader,
I can identify with you!
I had two AVR surgeries within eleven days in August 2000. Second one because of a blood clot due to too low INR (1.4). The hospital sent me home with a prescription of Lovenox in addition to the Coumadin I was taking. My INR also did not come up as it should but they sent me home anyway. Well, we ran out of Lovenox and were unable to make contact with the cardiologist office other than getting their voicemail. We left 5 messages in total and when they finally got back to us I had missed three injections. The following morning I was in trouble and was back in the hospital and the whole surgery needed to be redone, including a new valve. If anyone had pointed out to us how important those Lovenox injections were we would have bought the Lovenox ourselves, but we had no idea. What did we know?
I bought my Protime unit after 6 months of being on Coumadin. Had to buy it myself because insurance refused to pay. The first 11 months I had a horrible time with my INR level. It also did not help to have a jerk for a doctor (regular PCP by then) who kept changing the dosages of Coumadin, was extremely rude to me and my INR kept jumping around. I was a nervous wreck every week! When I did not have the machine yet, I at times went to the lab two to three times a week. Really scary! And to try to get the office to call me back the same day is another story. It would help if doctors do this so the patient can start taking the adjusted dosage that same day. DUH!!!
When I got the Protime unit things got a bit better because I no longer had to run to the lab all the time. That doctor still kept changing the dosages, still was rude, and my INR still kept jumping around. INR=IT'S NEVER RIGHT!
Well, I ended up firing that doctor and found a new one, but before I was able to get in for an appointment I had to wait approx. 6 weeks, but I did just fine alone. I was a bit scared but I did fine! I have been stable since July of last year.
My new doctor keeps me on the same dosage pretty much, and that seems to do the trick for me. He also likes the Protime unit, knows how to regulate Coumadin and trusts me completely. I had to demonstrate to them that I was capable of operating the unit and getting INR results.
I am on 20 mg a day. God only knows how I metabolize vitamin K and Coumadin, but in order to stay safe thats what I need. My new doctor is also not afraid of an INR higher than 3.5. He doesn't want me to go over 5 he tells me, but anything under 5 is just fine. He believes it is easier to deal with a bloody nose than to suffer a stroke or blood clot. That can be fatal! I wholeheartedly agree. Been there done that!
I no longer have many problems with INR. I take a test once every two weeks, and unless I am low I don't retake it. At times I am a little high. Last week it was 4.8, but there were no problems with bleeding. He kept me on the same dosage. I just need to intake about the same amount of vitamin K every day and if I do that I am fine. I have not eliminated anything from my diet, and I eat a fair amount of greens daily.
The protime unit is great Merryreader. It will give you freedom! I am going on vacation soon and don't have to worry about finding a lab to go to. I love it!
If your doctor doesn't want to write the prescription for the Protime machine, find another doctor. You are the boss!
Go get em!
Christina
Aortic Stenosis
AVR's 8/7/00 & 8/18/00
St. Jude's Mechanical
Coumadin 20mg a day