Really trying to not blow a gasket... (sort of graphic - re: cut/blood)

[watson524]

The history behind this is posted in this thread:

http://www.valvereplacement.org/for...son-on-ACT-because-of-a-fib-all-native-valves

This Saturday afternoon, my mom had her first "bleed event" since being put on Coumadin about 30 years ago. She decided it'd be a good idea to get on a chair to hang a curtain and fell. She didn't damage wrists, head, or hips on the way down but got a NASTY gash in her shin that caused what I consider major bleeding though not all related to the coumadin. It took a chunk of skin off about 2" long and 1/2" wide and then sliced up next to that making for a "flap". It's hard to guage the amount of blood she lost but she never got dizzy or anything like that so I suspect actual blood loss was less than what it LOOKED like (it looked like a LOT when I walked in after she texted me - yes, my mother texted me to tell me she cut her leg and can I come up LOL! - we live right down the road) Anyway, she was sitting in the mudroom bathroom when we got there with pressure on it. She said her leg was "spurting" but stopped with pressure. Ok.... so I got things sorted, checked her pulse (I don't know much first aid but I figured major blood loss = low pulse and dizzy) and that was normal. I got the cut cleaned up, wrapped and put her in the car to go to the ER for stiches. Got there, and the "spurting" they said was because she has vericose veins and cut an artery on the surface of the shin and wasn't as bad as it looked. Anyway, they glued the artery, glued the skin that was there and flapped it closed, wrapped things up, told her to follow up with her GP since shin wounds can be hard to heal and she has a bunch of skin missing that needs to grow. They gave her an antibiotic for 3 days and also checked her INR. And this is where I about blew a gasket and decided to post.

Her INR was 1.7!!! Her GP has still had her on 4mg/day and she said that she had it tested 2 weeks ago but they just said keep going as is (she gets tested at the hospital once / month - still no change from earlier this year on her testing methods) but this is just nuts. Now, I understand seeing all that blood would make you think her INR should not be higher BUT the ER felt no need to give her blood etc. she never got dizzy, pulse rate and BP was fine the whole time and they said it was just dumb luck to hit the artery which is on the pumping side and therefore putting more out that made it look much worse than it was. Ok so all that being said, she's going to the GP tomorrow so he can check her leg AND to tell him the ER was more concerned with her INR and why are we having this discussion again?!?! I told her I still stand by the "take 5mg on day 4 and 6, 4mg the rest of the time". She actually did take 5mg Sunday and Monday but I told her she needs to spread out that extra 2mgs / week but that I really think it's that simple. An extra 2mg total per week and then retest. Am I nutty?

The GP will not allow home testing but what if we got a tester and did home testing PLUS the regular testing? Can you get a tester without an Rx from a doctor? I'm banging my head off a wall at this point and while I can't go with her to her appointment tomorrow, she's going to tell me what he said and I told her that our next step may be to talk to her cardiologist. I know her cardio lets her GP handle ACT but this is just nonsense. I told her "you'll fall off a chair, break nothing, gash your leg and be fine only to have a stroke because of 'low' INR".

 

[dick0236]

Your mom seems to be on coumadin for A-Fib and probably has an INR range of 2-3, so a 1.7 is not way outa range, and could be partly attributed to a variance between the ER meter and your GPs meter. Many docs prefer to keep coumadin(warfarin) patients at the lower end of the range, especially in older patients. Your suggestion of adding 2mg/wk(about 7%/wk) should do no harm. Your mom has been on warfarin successfully for many years and if she has a good record of management, and is more comfortable at a higher INR number, the GP should have no objection.

I am 76 and have an old mechanical valve and my INR range is 2.5-3.5. I prefer my INR to be above 3.0 and have had some GPs object to maintaining that higher INR level. In todays world, frequently changing docs is pretty normal, and I have changed GPs over INR management.

Incidently, if your moms GP still has her on coumadin he is really in the "dark ages". The vast majority of patients do as well on the generic Warfarin at a fraction of the cost of Coumadin.

 

[watson524]

Thanks for your input Dick. She is on coumadin for the A fib along with MV stenosis and prolapse. If we saw this "low" reading once or twice I'd get it but Cleveland Clinic questioned it when we were there for a checkup in June, and the ER doc raised his eyebrows this weekend and back in March is was 1.6 too. So the good news is, 4mg / day seems to keep her consistent, but I think adding the 2mg/week would also keep her consistent but at a slightly higher and more optimal INR. We'll see what tomorrow's trip to the GP brings. She does take the generic warfarin, my bad, I just use them interchangeably.

P.S. I'm not sure if I've mentioned this before but is your picture from the turtle farm down at Grand Cayman? I have the exact same picture of my mom from down there.

 

[dick0236]

P.S. I'm not sure if I've mentioned this before but is your picture from the turtle farm down at Grand Cayman? I have the exact same picture of my mom from down there.

There is a chance it might be the same turtle farm. It was taken on one of our cruises. I understand there are several farms throughout the Caribbean where they raise the green sea turtle. I assume these are for release back into the sea. This, obviously, is a baby. The mature breeding animals are WAY bigger than this one.....and they got one helluva boney mouth.

 

[Bina]

Sorry to hear about your Mom's fall, but she sounds like she is quite resilient. My Mom had a fall where she
broke the shin bone and ended up with a slow healing and problematic wound for many months. Not fun.

Anyway, the INR of 1.7 really would be easier to manage if it were in the range over 2.0
and I totally agree with your increase of 2mg weekly until the next test.

Like Dick, I keep my INR around 3.1 and eat all the greens that I want.
Oh, and I also have a picture of a young green sea turtle taken at a rescue/rehab in the Florida Keys

 

[watson524]

Sounds like the turtle farms are a popular spot!

Mom went to the GP today and he said she goes between 1.6 and 2.3 so he was ok with adding a few mg / week and checking in a few weeks. He told her to take an extra 1mg every other day and get tested in the hospital lab as normal (so beginning of December). I told her that if she does every other day, that's not a consistent dose each week because some weeks that's +4mg and some it's +3mg so for now, she's going to go with the +1mg on day 4 and 6 and see what happens. I did tell her that she should try to get her INR checked on the same day of the week each time she goes which she usually does based on her schedule but I'm thinking that'd with not having the same dose each day, that's even more important for consistency so we'll see what happens. She has to go back on Tuesday for him to take a look at her shin gash and she's going to ask him again about a home monitor I think. She said maybe he thinks they're not accurate and I said he's a fool if that's the case, one of the biggest health care providers in the area here (Geisinger) has an ACT clinic where they use the finger stick. She just can't go there because it's only for people in their health plan. I said it's not like I want her to do the home monitoring and never talk to him. When I was with her last time and he said it's too dangerous, I think maybe he didn't know that with the INR home monitors, you're not just left on your own and he still gets results and manages it. I told her that going a month to know something isn't right is just not acceptable knowing you're out of range. She's luckily been on the 4mg / day for 25 or the 28 years she's been on ACT which is great, but now we need to tweak things and we need to know more real time results so we'll see. I'm happy to see that he upped her dosage so it's not just me talking here (even if I don't agree with the every other day thing).... baby steps.

 

[Dennis S]

I don't know if this can work for anyone else, but I start each week at 4mg, alternating each day. I find it much easier to keep track when I know every Sunday is 4, every Monday is six, and so forth. Saturday is 4, as well as Sunday. Despite the two consecutive days of 4mg I have only tested out of range 4 times in the last six years. I do find it is a great help each morning to know that if it is Friday, I need 6 mg, etc.

You asked about purchasing a monitor--I know this isn't your case, but for those who have monitors that are "rented" from the various companies--it might be worth your while (after a few years have gone by) to inquire about purchasing your monitor. I found I could purchase my monitor for $100.00. I then got a great deal on strips from Alere on Amazon. (Dealing with Alere directly was a nightmare), but purchasing on Amazon was a snap. If I remember correctly, my testing cost is down to less than $5.00 per test. I report my very few out of range tests to my GP, but I pretty much make the dosing call with his concurrence. With my new arrangement I don't even bother submitting the cost to my insurance company--which is another headache I no longer have.

 

[Adrienne]

About the every-other-day recommendation by the doctor, I wouldn't really worry about that. I was on Coumadin for a year after my operation (long story). I took 3 mg, 2½ mg, 3 mg, 2½ mg, etc., and my INR was very stable.

 

[watson524]

Ok well that's good to know, it just makes me wonder if it's harder to remember what you took the day before so you don't take say 3mg 2 days in a row or something. Not that I think it would do a whole lot but since she's so close to being in range and been very stable, that's why I was thinking just pick the 2 days / week and add 1mg those days. Though, I guess over the course of two weeks, the every other day thing would smooth out.

 

[Bina]

Ok well that's good to know, it just makes me wonder if it's harder to remember what you took the day before so you don't take say 3mg 2 days in a row or something. Not that I think it would do a whole lot but since she's so close to being in range and been very stable, that's why I was thinking just pick the 2 days / week and add 1mg those days. Though, I guess over the course of two weeks, the every other day thing would smooth out.

Yes, it is sometimes hard to remember taking pills and with Coumadin/warfarin it is VERY important to keep track.
Using a little 7 day pill box makes sense and can be a life saver.
Every Sunday just load up the pills for the week and it is foolproof...never any doubt as to what you took, I also
mark down my doses on my daily AGenda and have 6 years worth. My doctor loves me. LOL

 

[yotphix]

Since I began taking warfarin I have kept a daily diary. My tablets, my monitor and my diary are all in one bag, which I put on my bed each morning. I can't go to bed without taking pills, and I don't take them without writing down what I took. As it happens, I take 11 mg every day, but if I was to alternate, it would be easy to track with my rigid system.
Neither warfarin nor your body cares much about 7 days in a week, and alternating days would likely yield a more consistently in range result than the two days, three days system you propose. Mind you, if testing is at a fixed time each week, your result at that moment might vary from week to week. Keep in mind though, that you aren't trying to beat the test, you are trying to provide protection from thrombolic events on a consistent basis all of the time.

 

[Protimenow]

A few things:

I am an advocate of frequent testing -- weekly is good, sometimes even more often is better. Going a month or more -- even for someone whose monthly tests were consistent -- doesn't take into account what may have been going on DURING the month to change an INR.

If your mother is on a +1 every other day (perhaps on even days of the month?), I'll bet that a value on one day will be higher or lower than the INR on the next day, simply because of the different dosing days before. This is a phenomenon I ran into when I was trying to watch my INR climb away from a 1.2. Going on a weekly dose, in my mind, isn't an accurate way to dose. (Minor variations from day to day are okay, but it's good to realize that your INR will fluctuate).

I was fortunate enough to get a meter a few years ago. I started testing every week or two - personal experience makes weekly the best choice (at a minimum) for my testing. I got my meter on eBay, and I've since 'upgraded' to an InRatio. Prices on eBay seem to have gone up, but it's not a bad idea to keep watching. I can't recommend a source according to forum rules, so I'm just saying what I did.

There are a few reasons doctors don't allow patients to self-test. One is that they don't trust the accuracy of the meters (but this has since been pretty well demonstrated). Another is that they don't think the patient is capable of running the test, for whatever reason. If you think this may be the case, ask the doctor about letting YOU do the testing on your mother. Since you live close, this may be a viable option.