The details of ACT

[Alerion]

I'm looking for advice from people who actually have experience. My cardio does not.

I have been reading threads here and there about self testing v. lab testing. It seems home testing is relatively new? Well, it sure sounds appealing. I have no idea what kind of valve I will end up with but I am

....and that leads to my question:
I work in production and marketing now but I am first and foremost, a musician. I don't do it for money anymore (very often) but I had a great career and I simply won't become lax with playing or practice just because I'm not getting paid. I need to play to be happy.

So, I'm worried about the complications of regular lab-work and finger sticks. I worked with a diabetic horn player and his finger sticks drove him nuts (And once got infected which put him off the sax for a month) I've had distracting pain from blood tests that actually affected my playing (I play guitar) so i'm not just being paranoid. I can't find a "day in the life of an ACT patient"-type post anywhere.

How often do you wind up getting tested? once, twice a month?
How much blood do they draw and does it stay sore all night?
Is anybody self-testing at home? What's that like?
Can you draw blood from, say, a pinky? Or better yet, a friend's pinky?

Blood, fingersticks, needles... none of that bothers me. Distracting pain, even though it's mild, will probably drive me batty.

David

 

[Ross]

David at first you get tested frequently until you become stable. Once your stable, you may only test once a month. That's 12 finger sticks a year for people like me that graduated from my high school.

Home testing is not new. It's been around for at least 10 years, but wasn't really recognized by many physicians because some of the first machine were not accurate. That is completely changed now. My meter matched the Hospitals lab right on the money back in October. The lancets we use make the stick so fast that honestly, I don't even feel it anymore. I test weekly (That's 52 fingersticks a year for you Hoover people ) because that's what Medicare has us do, but it's certainly not a requirement for you.

Your buddies infection: He's got diabetes and he's prone to infections. I haven't heard of one person here yet that got an infection from home testing.

Ask around, perhaps you know someone that home tests and don't know it. If so, maybe you can take a test drive.

 

[netmiff]

our lancets are smaller and thinner than diabetic ones (I guess so we don't bleed out ); I have been home-testing for about a year now, test almost weekly (paranoia & frequent med changes etc.) and have never felt any discomfort for more than a minute or two. I use the side of my middle left finger, but you could use a pinky if you wanted to - using someone else's doesn't usually work more than once - they tend not to stick around the second time, pun intended! I am sure you could use your big toe (or even your little one) if you wanted . . .

At least around here, lab testing involves a draw from the vein in the crook of the elbow. I have terrible veins, they move around, and are so thick they need a pneumatic drill to get the needle in there. I always bruise . . . have even had butterflies, l then look like a boxer who went to work without gloves on!

 

[dick0236]

David, relax. I doubt that you have anything to worry about. I've been "fingerstickin" for many years and never had any unusual soreness or infection. The amount of blood drawn is teenee-tinee. If you like, use a different finger each time. Using your pinkie is OK but it might be a tiny bit more difficult to get a good blood sample.....but using your buddies pinkie would probably screw up the number

Keep your positive attitude

 

[Karlynn]

I'm a music director at a church. I play guitar, piano, Native American flute, flute and the radio.

The only problem I ever had was when I was teaching myself guitar and my fingers weren't calloused yet on my left hand. It hurt a bit to hold the strings down. So I just tested on my right hand - no problemo. Now with my fingers calloused, I just finger stick a little more to the side, since the thick skin on the callous doesn't stick to well.

With piano - it has never been a problem. I test weekly or every 2 weeks.

If you go mechanical - if I were you I'd be bold and tell your physicians you are doing so with the intent to home test. We can provide you with sources that show that home testing is the best chance you have for the lowest possible incidents if they balk at the idea.

 

[Woodbutcher]

Hi David,
I'm pretty new to all this, but I've recently had open heart surgery, a huge shock to my system and assult on my body and now three weeks into recovery and my strange new self..... Tumbling from a super fit 42 year old to an ambling breathless 84 year old in a few short weeks ! I was grumbling (which I seem to be doing a lot of recently!) to a doctor friend of mine today about it, about the fact I've been "mended" but feel really awfull and she pointed out that I have been mended .... But they had to break lots of stuff in the course of carrying out the mending ! A fare point I thought... I'm rambling, it's late... Over the last few weeks, a big part of my trouble has been getting my head around the whole Warfarin thing and the stigma in my mind of old and ill that seem to go hand in hand with it ! I race motorcycles and yachts, that just dosn't go with Warfarin ! BUt the more I learn about the drug and having used it for a few weeks I really think I can get used to it, touch wood I've had no side effects, no wrinkles, pale skin, hair loss, walking with a limp, nothing !
I was origionally thinking I wanted a tissue valve but soon got switched on to the On-X because I didn't want more than one surgery and also reading reports of maybe one day using lower doses of ACT with it. I'll not be holding my breath on that one but it would be nice?
The thing is, and through this whole ordeal, right from being diagnosed to the Angiogram, then surgery, then recovery, then Warfarin realisation, every potentially horrible scenario the bark has actually been worse than the bite ! As each reality physically happens, for me atleast it's not been as bad as the fear before hand.
Worrying about a pricked finger hurting really is nitty gritty fear, you'll be fine, hey maybe you could use a toe !?

 

[netmiff]

no side effects, no wrinkles, pale skin, hair loss, walking with a limp, nothing !




I could swear your voice is higher . . . .

 

[Woodbutcher]

Well spotted I'll use a deeper font !

 

[geebee]

A month in the life of an ACT patient for 28 years:

Monday through Friday - up at 7AM - go to work, home at 5:30. Take a few pills - live a normal life.

Weekends - depending on weather - scuba dive, ride motorcyles, swim, have raced sailboats, taken many road trips, etc. etc. Eat what I want, drink wine now and then.

Once or twice a month, stick my finger and home test. No pain, no residual issues.

In other words - normal, normal, normal. My life is no different from anyone else I come in contact with each day.

 

[Alerion]

Thanks guys.
I realize, especially after reading Woodbutcher (Congrats,btw) that I pbly sound like a little pansy. I realize a little finger sticking ain't gonna kill me, it's just the guitar thing that had me worried. Thanks to you all for easing my mind.
Hey Woodbutcher - you sail?
I stopped racing about 20 years ago when I found out cruising skippers stock more beer. i really like the cruising thing. Just sailed my Bristol 29 solo up the coast from N.C. to MA last year and had a great trip. My first time with a GPS of my very own. Bloody marvelous!
I'm hoping this surgery, whichever valve i wind up getting, doesn't restrict my sailing too much. Hope the same for you.

 

[Bina]

Since my surgery my hands haven't been exposed to much physical work and they are not tough or calloused anymore. I test every 2 weeks. I stick a tiny needle into the lower side of my finger tip and only need 1 drop of blood. That tiny area may be a bit tender for one day. I've picked up a guitar and there was no problem. I also type ALOT on this keyboard; no problem.
Grab a sewing needle and stick yourself.....it's fun!

 

[Bina]

David, my father (78) has a Bayfield 25 all tricked out, with wheel, GPS, custom finishing on wood, etc.

 

[Freddie]

I go to the lab every two weeks and they only take one small vile. Never had a problem with pain or soreness after having a blood draw done.
BUT....hopefully......one of these days.....maybe in March, I will get a home monitor.

 

[Alerion]

Hey Bina, Freddie -
So it's only one drop from the home monitor and the usual vial from the lab? No wonder everyone's stoked for doing it at home. I hope you get your machine Freddie. Is it expensive to get one? I have been going back and forth on valve selection but one factor I will have to consider is cost. I have always had great insurance but in this economy, I don't count on anything!

Is the cost of ACT and the monitoring (at home or the lab) enormous? I read somewhere around 3,500 a year just for one patient's meds. Does that sound kosher?
When I get older, will Medicare pick up the usual 80%?
Is moving to France worth considering? (Great food and wine vs. total lack of bass fishing. Damn! Are there NO easy choices?!).

Bina- I love the Bayfields. Designed and built up in Canada,I believe. The 32 in the slip next to mine in VA was incredibly roomy and pretty fast.
I'm designing (and hopefully someday building) my retirement boat. I'd like to get Heidi and our dog Edie on board to circle the Eastern part of the U.S. NY up the Hudson, across to the great lakes on the Erie canal, down the river system to the Mississippi across the gulf to Fl. then up the ICW to New England again. It's called the great loop and it's what old people do when they're too creaky to sail to the Azores.

David

 

[Lionheart]

Hey Bina, Freddie -
So it's only one drop from the home monitor and the usual vial from the lab?
David

Hey David,
For the 6 months or so that I was on ACT after OHS the lab checked me with a finger stick.
john

 

[Ross]

I read somewhere around 3,500 a year just for one patient's meds. Does that sound kosher?
David

Someone need to put down the crack pipe and get real. I'll post the cost of 5mg tablets since that is the most standard that most people use. Plan on 60 tablets a month, so that you can adjust up or down.

Brand Name Coumadin:
30 tablets $41.72
90 tablets $104.83

Generic Warfarin:
30 tablets $13.99 - save 30% ($6.00)
90 tablets $34.99 - save 42% ($24.97)

Jantoven branded Warfarin:
30 tablets $22.80
90 tablets $58.14 - save 18% ($13.00)


There isn't a hair of difference in any of them. They all do the same thing. If your insurance covers prescriptions, you'll likely be paying less then $10 a month. On my Medicare HMO, it's costing me $2.60 a month.

Maybe the persons meds cost includes everything that person takes, but it's darn sure not Anticoagulants that cost that much. I take 8 different meds and my cost per year for all of them is less then $3000.

I use the INRatio system. This is from QAS, our sponsering site. The prices listed are what they charge insurance companies. Your cost, if you have to go out of pocket on your own, will be lower. I'll say this though, these are probably the highest prices there are, so this would be a worst case scenario.

http://www.shopqas.com/patient/pc/viewPrd.asp?idproduct=216

I'm not recommeding Ebay, but they can be had there also:
http://shop.ebay.com/?_from=R40&_trksid=m38.l1311&_nkw=inratio&_sacat=See-All-Categories

 

[ALCapshaw2]

MANY Retail Pharmacies (including Walmart) have Generic Warfarin priced at $4.00 for a 30 day suppy (and some have a 90 day supply for $10 to $12).

If you get 2 different doses (say 3 and 4 mg),
you can adjust from (21 to 28 mg/week)
simply by varying which pill you take on what days
with Only ONE pill per day which minimizes cost.

Home Testers run from $1000 (if you push for a bargain out-of-pocket price) to $2000. SOME insurance companies will pay for them, some won't.

Medicare APPROVES of Home Testing and will pay (80%) for your monitor. A medicare supplement policy 'may' pay the additional 20% (you will need to check whatever policy you have / are interested in purchasing).

'AL Capshaw'

 

[Bina]

My Coaguchek home tester was C$500 and I put the expense on my income tax report. No big deal.
Finger sticking test strips are about C$7.60 each.....same cost as driving to the lab and parking, however my insurance covers 80% of the strips and they would never even consider covering my gas to the lab.
Coumadin is not expensive, (especially if bought in larger quantities), and insurance is covering 80% of it.
ACT is not costly at all, in comparison to other med therapies, and we are very fortunate in that respect.

 

[catwoman]

our lancets are smaller and thinner than diabetic ones (I guess so we don't bleed out

The gauge number is smaller, but they're not smaller than diabetic lancets.
Lancets for diabetics are much smaller because they are testing more frequently -- sometimes 6 X day.

However, the lancing device that came with the INRatio is far less painful than the Tenderlettes that you use with the ProTime 3. Those take a "slice"; the device that comes with the INRatio creates more of a pinprick.

 

[kbheart]

When I first started home testing, my finger would be sore for a day (writing was a little painful if I poked a finger on my right hand) but now I don't notice any soreness. Not sure why. My biggest trouble was being patient enough to wait for a big enough drop of blood. Maybe in the beginning I was squeezing my finger too much trying to get the blood faster.