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Pro Time Machine

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  • Pro Time Machine

    HI All, Well, I picked it up Friday night after work - my Pro Time machine - I was 'trained' for an hour or so to learn all about the machine. Got my video and instruction book and she took my INR for the first time on my my new machine - it was 1.5 - Yes, I'm 'down' again. I was 3.0 a week and a half ago. I just can't get use to being 'consistent' with my eating. I was very much a heart healthy diet and although I don't want to take any more coumadin than I have to. I'm taking 7.5 mg a day for 7 days and I still got the 1.5 INR !!! My doc's coumadin clinic doesn't communicate to well - so the last month or so - I kind of had to increase it on my own. My coumadin clinic called a week or so ago - asking my husband - as I was at work - how much medicine is she taking and what is her INR level. My husband didn't know. I don't know why they don't call me at work. Although I really don't want to talk on the phone at work. But of course I would, so I do call them back - but all I ever get is a voice machine. I was going to the local clinic in town getting it tested but they were told that they were only to test me and not to tell me how med to take.. But since my doc's clinic wasn't getting back to me as I had told them then they would simply say - well I can't tell you what to take for meds but if it was me !!! So, I followed their guidance - what the heck was I suppose to do - they certainly knew I needed some guidance. So I would tell them what I think I should take and they either agree or said well if it was them this is what they would do - but of course technically they couldn't tell me as my doc's coumadin clinic was suppose to do that. They use to have 3 nurses in my docs clinic - they are down to 1 !! But they also have this e-mail thing you can do with your PCP and so I tried to get some guidance from my PCP's nurse and she forwarded my e-mail message to the coumadin clinic - which called me and left a message. This is getting ridiculous all these voice messages and I don't think they've given me any guidance for over a month !! By the end of next month - the one nurse who is left in the dept will probably be gone !! I don't know what I'm eating that's bringing it down. But the nurse who sold the machine to me - insurance paid - said it could very well be my exercise intensity and frequency. They could have an impact on my levels - I said well the clinic nurse said that 'exercise' could effect it alittle but not that much (3.0 to 1.5) in a week and half. So, I increased my coumadin from 7.5 mg a day which I was taking for about two weeks to last night after my testing I went and took 10.0 mg and I think I'll try that for 3 days a week and 7.5 mg for four days a week - in other words I do 10.0 on Monday and 7.5 on Tuesday and back to 10.0 on Wednesday and so forth. I'm going to call my doc's coumadin clinic - AGAIN -Tuesday but I don't expect to get any help. Since I have my machine I won't probably be able to go to my local clinic - so I guess I'm really on my own now.. The nurse who gave me the machine - said I shouldn't do the doseages myself - "well, what am I suppose to do if they don't call me" - and then they gave me hell for calling them two days after I had my blood drawn.. This was the other nurse - who said - she just didn't have time - but she's since has left the dept. What MESS.. I'm excited I got my machine - but alittle nervous that I feel like I'm on my own. I mean I can't take 'nothing' while waiting for them to get back to me. So next Friday - I'll be taking my first 'test' at home !!! My insurance pays for 4 tests per month. The nurse who sold it to me - said to call when I get down to one test and she will order more and I guess it will come by mail. Of course, I'm not home to often - so I wonder if I have to be home to sign for it.. This could be messy before it all gets 'worked' out. I don't know why they don't understand that if you 'work' outside the home - your not home to take calls and delivery packages !!! I don't know how many times I tell them - I'm at WORK and if you call me at 5:00 then I'm on the road on my way HOME.. But they still call leave a voice message on my machine. Sometimes they get my husband - but he never thinks to tell them to call me at WORK !!!

    Oh well, just another stressful situation to overcome. But I did get my machine - and my insurance to pay for it - My insurance approved the request in 3 days.. after my previous nurse told me it would take MOS.. I called my insurance company and they said - well if they would submit a 'request' then we would in all probability approve it and you would get the machine. OF course if they don't submit a request to us - then we can't approve it - and we have not gotten a request !!! I was so angry. Anyways, it was finally straightened out and approved in 3 days. I was her 'first' customer to have sold a machine to.. SO, I guess she's learning as she goes. I hope I get my meds better each month.

    Do some of you get your own test kit packages? Who do you call - if by chance I don't get my test kits for the next 3 mos !!!

    Sorry to chat so long - just frustrated and yet very happy and yet very nervous - since I will truly be on my own in all probability as far as doesage
    - I'm going to take it this for one more month and if things don't get straightened out - I'll tell my cardiologist when I see him next month. I know he'll get the lead out of someone.. He will most likely be very upset.. But I certainly don't want to fight and argue as I did in the beginning to get 'help' from the coumadin clinic - I was tired of calling and leaving messages and getting ignored. I couldn't very well ignore the low INR levels. The local clinic thought I was 'right' to increase my doseage each time it was low. Some weeks I actually got a 'good' INR. But the next it would go down so then I tried for one week I would take either 5.0 mg or 7.5 depending on how much 'green' food I ate. But that didn't work to well after a week or so.

    Oh well, better days are coming !!! Just have to be patient !! hopefully it will get better. Its only been 3.5 mos.. I've got to learn to be consistent.. Which I'm afraid if I stick to my heart healthy diet - I'll be taking lots more coumadin in my future I know when my INR is tooo high that 'green' tea will get it down. But I don't know how to get my INR UP quickly..

    I think I should just call my cardiologist on Tuesday - or e-mail him - and let him do the talking with his coumadin clinic !!! But, I don't want to seem like a nasty lady.. and get myself all upset... I'm sure it will get straightened out SOOON.. I just wish it was sooner than later.

    Thanks for listening to me 'vent'.. Sometimes you just need to vent.. it feels good to get it off my chest.. and share with people who understand.

    Best Wishes
    Runner

  • #2
    First of all, don't wait until your down to one test left to order. What if you have to do tests to verify a bad result? Call when your down to 3 left. Call QAS. The number should be on your paperwork and perhaps even on the machine bottom. Deliveries I have not had to sign for, but it is refrigerated, so you don't want the guys leaving it in the sun. Have a neighbor take custody if you must or have it delivered to work.

    I highly suggest you get a dosing algorithm chart from Al Lodwick. That will help you get your dose straightend around. For an INR of 1.5, I would increase it by 15% over the week. If your dose was 7.5 everyday, that equals 52.5 mg per week. Add the 15 % and you now have to take 60mg per week divided by 7 or 8.5 mg per day or whatever you have divided as equally as possible to come out to 60mg a week, then retest in 2 weeks.

    Comment


    • #3
      Runner,
      You are a great candidate for home testing. My INR has not been too stable for the almost 13 years I've taken warfarin. I am a consistant eater. My doctors finally said that even if I wasn't a consistant eater, it wouldn't explain my wide flucuations from time to time. I will say that in the last 2 years it has been more stable. AND in the last 2 years (= to how long I've had my machine) I have been more stable, plus taking charge of my own dosing (with the okay of my doc.)

      I recently (last 4 months) began working out regularly and have had to increase my dose to almost 70 mg a week. I have never taken any less than 6 a day in 13 years. Must have a healthy liver.

      Comment


      • #4
        Hi Runner

        Good luck with your new machine. Aword of advice if I may. Even though your Insurance will pay for 4 tests per month, see if you can order 3 or 6 months worth to keep in your refrig. That way if you have a bad test or you're inconsistent you have them to use. I know ours does and I order about a 6 month supply for Tyce.

        Secondly, PLEASE take your protime to your clinic and do both tests there on occasion. Just a double check for you---it's well worth it!!! Even if you go three or four times a year as a comparison.

        Again, best of luck with your Protime.

        Evelyn

        Comment


        • #5
          Thank YOU so much - Ross, Karlynn and Evelyn - it was so good to hear your suggestions. I will call and get some more test kits and I'll get a chart from Al Lodwick and I do think taking my machine a couple times a year and having it checked with theirs is a great idea. I have been doing that with my blood pressure machine once a year. Luckily, its always been good. But just in case - its good to have it done if the doc asks me to monitor it.

          So,

          1. I'll get more test kits sooner - I'll probably call the nurse back the end of next week and if she can't get them within a week then - I'll call QAS myself. I could still go for that local clinic test that I have scheduled for next Tuesday. Heck they wouldn't know I got my own machine.

          2. I'll order a chart from Al Lodwick.

          3. Test my machine against the coumadin clinic blood test.

          Plus, I think if I had to take 8.5 mg per Al's chart and my pills are only 5mg tablets or cut in half 2.5 mg.. Perhaps when I see my doc next month I should get a prescription for another doseage in case I have to cut the meds in different increments. I'll ask him.

          You've all been such a big help. Thanks and hopefully I'll get this all figured out and hopefully I'll be able to keep my INR somewhat in range..

          Thanks so Much - I don't feel so insecure about this anymore.

          I know I'll screw up my first test - I mean that's a given. But that's how we learn - trial and error.. But I could never do that without your help. IT can all be so intimidating at first.

          Best Wishes
          Marilyn (runner)

          Comment


          • #6
            If all you have are 5's right now, I'd take 10mg everyday except Monday and Friday and on those days, take 5mg. There is your 60mg for the week.

            Comment


            • #7
              I don't see any problem wtih splitting 5's in half. Even if the split is a little off, use that leftover portion the next time. It's smoother than taking the whole 5 at once - but that really shouldn't come into play except for a few days prior to a test. When you get the chance, order 2.5's. That's all I ever buy. Doubling is easier than splitting.

              I agree that haevy exercise can lower your INR but not that drastically.

              You are not the first to post about untimely communication with your coumadin clinic. What a hassle! You may need to correct their patient profile to have them always call you at work. Even have them write in your work hours. A cell phone would be even better, if you already have one.

              Lately, my coumadin clinic has been real busy, and we are leaving messages. So far that works fine because the coumadin nurse is very attentaive and specific. For example, her last voice mail to me confirmed my INR and gave me specific instructions. If it was complicated, I'm sure that she would have asked me to call back.
              [COLOR="blue"]Tom [/COLOR]
              [COLOR="red"]BicuspidAV. BactEndocard. AorticVR. PlantarFasc. IngHernias. Crohns. [/COLOR] [COLOR="green"]From couch to 26.2 in 53 weeks! Love to "Tri"[/COLOR]
              [COLOR="purple"]'Tis Grace that taught my heart to fear and Grace my fears relieved.'[/COLOR]

              Comment


              • #8
                Thanks Ross and Tom. I'll do as you suggested Ross - it makes it easier with one prescription and 'one' doseage - then to have two and trying to get it exact. I appreciate your coumadin expertise. I have e-mailed Al and I plan to send a request along with a check for the chart.

                Although I'm sorry to hear others with the same coumadin clinic problems - its nice to know - I'm not the only one.. I can't understand how they expect one nurse to do the work of 3 !!! She's going to go crazy and its probably a good idea for me to have a chart and hopefully be able to help myself - when she can't be there all the time. Coumadin doseages must be kind of like being a diabetic - I would think. Thank goodness I don't have to give myself shots - I would freak out..

                Tom, I thought the same when my nurse who sold me the machine that exercise could decrease my INR - especially with the intensity of my exercise) she said - I did actually do 15-20 miles on a bike on Friday and then lifted heavy boxes all day at work - but its such a big drop I said. Plus, the local clinic said exercise shouldn't change it that much. I told her - even with alot of exercise it shouldn't decrease it that much (from 3.0 to 1.5) I think it was my food intake. I still have so much to learn about what foods effect our levels.

                Actually, when I think about it - once I learn to take my INR on my machine - it should go better as far as communication with my doc's coumadin clinic - as now she can't say - the local clinic never sent me your blood results. Which is what I often heard. So, I can leave a message. I'm not sure I'll hear back for a couple days so its good to have an idea what doseage I should target for - in case I don't hear from her.

                One thing I noticed today - as the nurse who trained me on the Pro Time machine asked if I was having any black and blue's. I just said NO without even thinking and I never check. Then later my husband said he noticed a black and blue on my arm. Fairly medium size black and blue. Then I looked today and I noticed I had 5 or 6 more. I woudn't say the others are large - but they hurt if I press down on them. So they are definently black and blue - even through my dark tan :-) which I have to say is awesome !!!

                I don't remember what your suppose to "do" if you show black and blues? I think with an INR of 1.5 it can't be too serious. Does't black and blues mean that your blood is too thin? Maybe I should pay more attention to black and blues in the future. I never really paid any attention prior to my husband mentioning the 'one' he saw. I wonder how many and how big of black and blues constitutes concern? I know Tuesday and Thursday I drove home from work and on Tuesday my left side of my face went 'numb' and then on Thursday it was the right side.. Of course I blame it all on the stress of the 'drive' home. Its horrendous traffic. As soon as I got home within an hour the numbness was gone. Thank God.... I think I have to learn to manage the stressful drive home better - I should get a nice CD that relaxes oneself. I just hate the tractor trailers - they drive so fast - I usually take the back roads - and its quieter but it takes me a good 15 minutes longer. I normally do the back route - but I wanted to get home quicker those days so I took the interstate.. Bad move.. Live and Learn..

                Thanks so much for your help. I would really like to get a 'good' book on various meds and how it effects your coumadin level and I wonder if my headaches are being caused by the coumadin. I get it off and on - but I've never been one to get headaches like this. I hope it goes away as my body adjusts to coumadin. I'm sure it will get better.

                Thanks Everyone :-)
                I really appreciate your input and I hope I'll try not to bug you to much. I'll ask my nurse for the suggestion of a good book - so I can learn all these 'ins' and 'outs' of coumadin. But all of you have been a blessing to me and especially helpful with all my 'concerns'.

                Thank You and
                Best Wishes
                Marilyn (runner)

                Comment


                • #9
                  Marilyn:
                  When I first got my protime machine, I did call in my INR each week. I was about 2.5 to 3.0. Decided I wanted to be up near 3.5 or a tad over, so my PCP's office said OK, and I upped my Coumadin.
                  I no longer call in my INR each week. In fact, I just take my Coumadin record booklet in every 2-3 months for my PCP's office to photocopy. I now do my own dosage adjustments, thanks to Al Lodwick's chart, which I heartily recommend that anyone with a home test machine have.

                  Yes, I get more bruises than pre-op, but we also have a few filing cabinets that are very poorly positioned in my office -- always hitting one en route to the water fountain!!!!!!!!!!!!

                  I really like the security of knowing my INR -- ASAP and weekly. So many things can affect your INR. I know some people with St. Jude mitrals who are comfortable with testing every 3 months at their Dr.'s office. Not me!
                  Marsha (7-28-50), MVP 1990/MVR (St. Jude) & ASD repair 6/24/03 Baylor University Medical Center, Dallas Texas. Hometesting since 11/03, first with ProTime 3, now with INRatio.
                  John (3-13-46), MV repair 5/10/07, Dallas Presbyterian, port-access incision, Dr. William Ryan. Chordae ruptured 12/05 in car crash.

                  Comment


                  • #10
                    I test every 2 weeks(Coaguchek} and if out of therapeutic range(INR 2.5-4.0) adjust dose
                    (use 10 percent solution) and retest in 1 week. No problems coming up on 6th
                    anniversary.My PCP draws an arm stick and sends it to the central hospital lab
                    at the time of my annual physical. This year was unusual, the 6 year old Coaguchek got INR 3.1 and the lab 3.1!
                    Marty
                    Mitral valve replacement
                    September 17, 1998
                    Mechanical St. Jude
                    Inova Fairfax, Falls Church VA
                    Dr. Ed Lefrak

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