This is me

Subject: Re: This is me Tue Jul 22, 2008 5:11 am

Hi blebs

Thanks for your post. The blood lab is doing my dosage and sending copies of my INR to my doctor each time. I hear what you are saying, however, I can also understand why they would stop my dosage for 2 days and request a follow-up INR. My INR was in range for a very long time so then all of a sudden it shoots up. I know that mine was on 3.5 at that point but what if they left it for another couple of days and then, come 2 days later, my INR is at 5.0 for instance. I believe that is why they stopped it for 2 days. A patient runs the risk of bleeding internally if your INR shoots way too high.

I would have been more concerned if they told me to stop for 2 days and then continue treatment as usual and only want to do and INR say a week later.

I think they did that to get my INR down incase it keeps climbing way too high, way too soon (another thing if it had stayed on 3.5 but they don't know whether this will be the case). I think that the risk of me clotting again in 2 days (of no Warfarin) is far less than the risk of my INR shooting way out of range and I stand a chance of bleeding.

Seeing as you self-test and self-dose, it is easier for you to monitor as you know that there might have been a sudden change, say in your diet for instance and thus no major cause for alarm just yet. Seeing as the lab do mine they do not have that added knowledge of what I did since the last INR or possible reasons for it to shoot up and whether or not there is cause for alarm just yet which is why I prefer they take "worst case scenario" and get my INR down.

This is just my opinion and I may be way off, but it makes sense to me.

Thanks very much for the link - I will definitely read it. Much appreciated.

Thanks for pointing out that my dosage is due to me probably being a fast metaboliser of Warfarin. I always wondered about my high dosage, I never thought of that and I makes perfect sense. (Always wondered if it is because some people's blood is just "thicker" and thus need more anticoags than others).
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The key to success is for you to make a habit throughout your life of doing the things you fear. - Vincent Van Gogh

Age : 27 Joined : 21 Jul 2008 Posts : 10

Subject: Re: This is me Thu Jul 24, 2008 1:32 pm

Hi Jen

How are you doing lately? I hope you have more answers to your questions. It is so frustrating to be sent from pillar to post, I can only imagine what you must be going through. Please know though that things WILL get easier. Have you been back to the doctor that started your meds at hospital yet? How are you feeling?

I think the worst for me was (in between all the confusion of what was actually happening) that I did not get enough answers or rather not knowing which questions to ask seeing as I had no clue re DVTs - what it was, why it was happening and just how serious it was. You have people taking bloods, injections going on etc etc and you are basically left in the dark, not knowing what the heck it is all for.

Anyway, the best thing for me was to read as much as I possibly could regarding DVT/PE. I would then ask my doctor about it. A person feels a lot more "in control" if you have the necessary information and actually understand what is going on in your body and what you need to do to take care of yourself.

With regards to people not understanding, I agree fully. It used to bug the hell out of me, but I finally decided to ignore it. If they think I'm neurotic, then so be it - I need to be. Now, as I learn more about it, I tell those closest to me too. I think what irritates me even more though is if people (those who have no clue regarding the condition) try to correct you lol. For instance, I would say to friends that I feel exhausted and tired at times and I believe it is because of Warfarin. I then get told by some, hmmm maybe it is this or that and not the Warfarin. Erm okay...lol

Do let us know how you are Jen! I hope you are feeling better!
_________________

The key to success is for you to make a habit throughout your life of doing the things you fear. - Vincent Van Gogh

Subject: Re: This is me Thu Jul 24, 2008 3:31 pm

Sorry, didn't mean to come off as a smart alek. I have yet to see some one bleed on an INR of less then 5. I've even had a couple show up with INR's as high as 13.0 by lab tests, which may or may not have been that high, but after 10.0 accuracy is no longer relevant. For DVT it's not as critical as it is for heart valves, but still, anything under 2.0 and you could be in trouble. It's better to replace blood, you can't replace brain cells. In other words, better to be too high then too low.

Subject: Re: This is me Fri Jul 25, 2008 4:37 am

Hey blebs...no hassles Smile

INRs as high as 13.0!! affraid

Good heavens - scary! So if I understand you correctly, do you believe that the risk of bleeding is only really after an INR of 5? I don't know of anyone else that do their own INR testing and dosing (although I've read about it and seen advertisements). How long have you been doing your own and how often do you test your INR? I believe you draw blood just by a finger prick (similar to testing your blood sugar levels)? Do you need to call in your results to your doctor or do you only do so when there is a problem? (Lots of questions I know, but I'm curious as to how it works).

Have a good day!

Regards
Madeline
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The key to success is for you to make a habit throughout your life of doing the things you fear. - Vincent Van Gogh

Subject: Re: This is me Fri Jul 25, 2008 8:16 am

Gizmo I'm trying to find some published numbers but haven't found them yet, but basically yes, INR's 5 and under pose very little risk for bleeding. Now I can say with certainty that anything over 4.0 is no more beneficial then a normal range. People have been scared to death with the threat of bleeding and in honesty, it seldom happens. Older people 60+ years of age, are at a higher risk then younger persons. Older bodies have a natural clotting problem all their own in later years.

So many make it sound like if you get a minor cut, your going spurt blood everywhere and die. It's just plain silly. Stop the bleeding like you would any other time with direct pressure. Sure you may have to apply pressure for a tad bit longer, but it's no worse then someone not on anticoagulants.

Think of it like this, a normal nonanticoagulated person with an INR of 1.0 will clot in 10 to 12 seconds. Someone with an INR of 2.0, 20 to 22 seconds, 3.0 30 to 32 seconds. There is very little difference in the time between all of these. Enough of a difference to hinder clot formation, but not enough to allow you to suddenly hemorrhage blood from every pore in your body. They need to lose the term "blood thinner" because it does NOT thin your blood nor change the viscosity any, it simply affects the bloods ability to form clots.

I've been testing and dosing myself since the late part of 2001. I test once a week. Testing more then that is really a waste. It takes 3 days for a dose of Coumadin to show up in a blood test. So if your being tested every 2 or 3 days, the person managing you cannot find the correct dose because they've never given it enough time to stabilize. We see so much of this, that it's sickening. People complain that they've been getting tested for months and aren't stable, then they go on to tell you that their being tested 2 times a week or more and their doses are changed just as often. They'll never be stable in this type of situation. Test once a week and if a change in dose is required, change it, but don't test again for 1 full week. By then, the true picture will be presented.

By home testing, I can stay in range 70 to 90% of the time where as when I was going to the lab, best I got was 45% of the time, so there is a big difference.

You can watch a demo of one of the many systems at the link below:
http://www.protimesystem.com/pro_howtouse.html

Also, I'm leaving a link that you'll find very useful if for nothing other then having the knowledge:

http://www.aafp.org/afp/990201ap/635.html
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"A man is ethical only when life, as such, is sacred to him, that of plants and animals as that of his fellow men, and when he devotes himself helpfully to all life that is in need of help."Schweitzer

Subject: Re: This is me Sat Jul 26, 2008 1:42 am

Thanks so much for the links blebs and your very informative post!

Wow, what a painless and hassle free exercise with the home testing system. I'm really impressed. From what I've seen, they go for around US$1000 ... admittedly, converting that to South African Rands make me a tad light-headed LOL Shocked

(Exchange rate of one : eight) *cough*

Still, I think for someone that is a long-term Warfarin user, it is definitely worth getting as the costs will be less in the long-run. I currently pay +/- US$11.25 for INR testing and dosage. If my INR is in range I only need to go once a month but when its out, it can be as often as 3 times a month. Apart from the cost, it will just be a lot less troublesome. Hmmm....serious food for thought and investigation - wonder if they sell them in SA scratch

... erm, what's the chance lol. Wink

_________________

The key to success is for you to make a habit throughout your life of doing the things you fear. - Vincent Van Gogh

Subject: Re: This is me Sat Jul 26, 2008 4:40 am

Yes, the units are quite expensive. I'm not sure if any are available in your neck of the woods, but couldn't hurt to ask. What your paying vs home testing is about the same, so there isn't any savings that I can see except your veins.

I wish I were one that could get away with once a month testing, but my INR, even self managed, can get way out of wack in 2 weeks. Also, my INR fluctuates between Winter and Summer. I guess it's due to where the veggies come from during the year. scratch

_________________
"A man is ethical only when life, as such, is sacred to him, that of plants and animals as that of his fellow men, and when he devotes himself helpfully to all life that is in need of help."Schweitzer

Subject: Re: This is me Sat Jul 26, 2008 9:52 am

The lab phoned me this morning, INR stable again at 2.45 so next INR only on 22 August again...Yay! bounce

Had a nice morning shopping and bought some leg stuffies Wink

Bought two pairs of compression socks seeing as my leg is very achy of late so want to give them a bash. So here I sit with them on and dero, full marks for calling it fugglies lol, I have to agree.

Found such a stunning foot rest too which lets you exercise your legs when sitting. Only bought one first to try it out and I must say its really fab! I'm going to get another one in this week to use at the office. I spend far too much time in front of a computer so this is ideal. Check the pic below.

Oh yes, and found a cool pill cutter too, quite nice as it has a compartment where you keep your pills in. So now, I'm organized Wink

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The key to success is for you to make a habit throughout your life of doing the things you fear. - Vincent Van Gogh

Subject: Re: This is me Sun Jul 27, 2008 12:39 pm

Am I the only one that has a pill compartment and still ocassionally forgets to take his medicine? jocolor

_________________
"A man is ethical only when life, as such, is sacred to him, that of plants and animals as that of his fellow men, and when he devotes himself helpfully to all life that is in need of help."Schweitzer

Subject: Re: This is me Mon Jul 28, 2008 2:42 am

Hi Madeline!

I'm back!

Yay about your INR!! woohoo!! cheers

How are your compression stockings, did you try them yet? I thought the worst of my leg aches were long over, but had the limp back this wkd. (I overdid it--will tell you about it later--had fun though!). Yep, the limp from pre-diagnosis! So I will go pick up my stocking tomorrow probably to test it out. What kind did you get? The hospital Dr. wrote me a prescription (weird... 'cause you can just buy them regularly) for "TED"? medium strength, ankle to thigh... hmmm.. sounds sexy don't it?! geek

Ok... your foot contraption thingy sounds like a GREAT idea!!!! I could sooooo use one for when I'm sitting at the computer! Where did you find it? (What kind of place?) Do you have a weblink for it? Would love to look it up, how it works, the price, etc. and compare to what I can find here.

AND a pill cutter! You are organized indeed! Very impressed with your shopping this wkd.!!

------------

Blebs,

I'd have to say I'm with ya on that one! Luckily I have not been more than one hour out at latest! (Knock on wood & all that!)

geek

Subject: Re: This is me Mon Jul 28, 2008 4:59 am

Hi Brenda

Welcome back – glad to hear that you had a good time! Ooooh yes, its really super cool – you should really invest in one. Mine is called the “Ergonomic foot rest” and I bought it at “The Back Shop” (although I don’t see it listed on their website) http://www.backshop.co.za/products/products.htm
I paid R599 ($75) for it. Check out this website: http://www.relaxtheback.com/foot-rests-subcategory-6389777 - goes for $49 and looks like the same thing to me.

It is unreal how much pressure it takes off your back too. It is so comfortable to rest your legs on it and its fab for circulation as the top part moves as you press your toes down (like putting your foot on the gas) and then back again with your heels. Highly recommend it! I’m definitely going to get one for the office too.

As for the compression socks – I am AMASED at what a difference it makes. My leg was so sore again on Saturday and after buying the socks, by Saturday evening the pain was soooo much less, Sunday ALL gone. Was saying that it’s the first time in absolute ages that I was not constantly aware of my leg (not necessary sore always, but aware of it).

I bought the knee high medium compression socks…in ultra sexy black lol.

Okay, lastly my pill cutter – erm crap lol. All its good for is keeping my pills in, the cutter smashes the pills to dust! So best I continue the old fashioned way: “hold pill with both thumbs, apply pressure and Al Pesto! – two halves! Wink

LOL

Sorry to hear the limp is back! Mad

I have a feeling the compression socks will do the trick. I cannot believe I never bought any earlier. My doctor never mentioned it and I never gave it too much thought either (like a total cluts!). Anyhoo, I’m glad I finally got some. They are great! Hope your leg feels better soon!
_________________

The key to success is for you to make a habit throughout your life of doing the things you fear. - Vincent Van Gogh

Subject: Re: This is me Fri Aug 01, 2008 5:16 pm

Do your feet hurt also? Mine are killing me most of the time. No, I'm not diabetic, but man oh man, my feet sure feel like it.
_________________
"A man is ethical only when life, as such, is sacred to him, that of plants and animals as that of his fellow men, and when he devotes himself helpfully to all life that is in need of help."Schweitzer

Subject: Re: This is me Fri Aug 01, 2008 5:21 pm

Hey Blebs! Smile

I know I'm jumping into Madeline's journal (again!)... just want to say that my foot of my DVT leg does have small bits of crampy stuff happening from time to time, which one of the GPs said is par for the course (in my situation). Not killing me though! What does your GP say?

Subject: Re: This is me Sat Aug 02, 2008 1:56 am

Hi Blebs

Nope, my feet don't hurt. I have the occasional cramping in my foot that Brenda mentions but mine happens very seldom and I cannot really complain about it.

Shame, what explanation does the doctor have?
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The key to success is for you to make a habit throughout your life of doing the things you fear. - Vincent Van Gogh