Wednesday, December 14, 2005 9PM est.
Guest Speaker: Wil aka. Printercrafter
Topic: Guardian RT
DIABETES TALKFEST WITH PRINTCRAFTER: NOW OPEN!
printcrafter: Hi everyone!
AllisonBlass: Hello everyone! Welcome to Diabetes Talkfest! My name is Allison and I’m your host for the evening. Tonight we have a very special chat with William, aka Printcrafter. Wil is one of the first people in the U.S. to use a Medtronic Minimed Guardian RT, the newest in continuous glucose monitoring systems. Wil is 42 and lives in Arizona with his wife and 3-year-old son. He and his wife run a small; W photolab and photography studio. He was diagnosed with diabetes in October 2004.
He currently also uses a Cozmo pump. He is very hypo-unaware, which launched his “quest” into the world of continuous glucose monitoring. Wil has been using the Guardian for about a month and writes about his daily experiences with the machine on his blog, Life After DX, <a href=”http://lifeafterdx.blogspot.com”>http://lifeafterdx.blogspot.com</a>.
printcrafter: Any questions, Allison?
AllisonBlass: Well, I’ll get the ball rolling, Print. What made you decide to try the Guardian?
E: Printcrafter – celebrity extraordinaire!
printcrafter: I was in Denver, visiting family… I had been at 241 at the time of a meal and two hours later I check my BG… and it was 35…. Yikes!!! Not a symptom…at all. Scared the hell out of me. So hypo unareness is the short anser.
AllisonBlass: Scott would like to know more about what the Guardian exactly is. Can you give us an overview?
printcrafter: Scott–an infusion set like sensor. A small trasnmitter taped to your body. A wirless monitor on your belt (or wherever). The system tracks BG in real time and gives you results every five minutes. It also alarms for high and low to BG levels you choose. After any period of time you can also downlodad a track of the BG over 24 hours periods. Very coool.
E: It tracks bg or intestitial glucose?
printcrafter: It measures interstial fluid sugar levels, but the data is converted to BG numbers as that is what we are all used to.
AllisonBlass: Jon asks, “How comfortable is it to sleep with?”
printcrafter: Very. It doesn’t bother me at all. The monitor is on the night-stand. At night, it is less hassel than a pump.
AllisonBlass: Bethany asks, “Did you ever think about using diluted insulin- since you are so insulin sensitive?”
printcrafter: No, neither of my endos has mentionsed that
AllisonBlass: Scott asks, “Does it provide the patient with readings, or is it like the early versions which require them to be downloaded at the doctor’s office?”
printcrafter: That is what is so cool. You can look at any time and get the latest reading. Here, let me check right now….click….121.
AllisonBlass: Now *that* is cool!
gina: that is cool dude i love that
printcrafter: faster than a finger stick!
AllisonBlass: Bob wants to know: What is the price/day of the Guardian versus test strips (test strips: about 7x/day @ $.75 each)?
printcrafter: Arrrrrrrrrrrrrg. The little SOBs are pricy! $40 per sensor. They last three days. And you still have to use at least some test strips too, to keep it in calerbration.
AllisonBlass: I’m sure everyone will be wondering this: what about insurance?
printcrafter: Insurance? What insurance. More on that… As of now, no isnurance is on board. They hope within six months or a year.
AllisonBlass: Ellen asks: Regarding the frustrations you’ve so eloquently expressed on your blog, do you think this device is not yet ready for prime time so to speak?
printcrafter : Well…..hmmmm…..that’s a hard one. Let us say I think it is nearly ready. There are some growing pains. But… Medtronic is very responsive to me. They’ve been great so far. I think all of my bugs are gonna be worked out. It will be easier for all of you!
AllisonBlass: Jon asks: “Has it alerted you to any lows since you have been wearing it?”
printcrafter: Twenty one times.
gina: Scheduled Chat Room wow. you really do go low a lot huh
printcrafter: Yes. Let me go on a bit…
reese: i also go low alot, I tend to overbolus
printcrafter: In hind site, some of those lows may have been false alarms. I’m getting smarter about using the system. But it really can save your ass.
AllisonBlass: Reese would like to know if you have less anxiety about lows and highs.
printcrafter: Very much so, esp. the first 2 weeks I was on the system. Then I had a bad sensor, which shook me up. I’ve been a lilttle more paranoid since then.
AllisonBlass: “How long have you been using this?” asks Michigan mom.
printcrafter: I hooked up on 11-22-05.
AllisonBlass: Jon asks, “How accurate is the sensor compared to a finger stick test?”
printcrafter: Complex question. Average is 13.8% varance from a finger stick. But…it really depends on the level of BG. They system is less accurate a very low levels (bummer!).
AllisonBlass: Ellen wants to know where you can put the sensors on the body. Oh, and have you had any skin irritation?
printcrafter: Any where you can wear an infusion set. Stomcah is best. Sorry about spelling…RE Skin: hell yes. Let me tell you more about that. I had a reaction to the adhesive they use. Solved in the end by putting a IV3000 dressing under everything. Next
gina: wait. is the IV dressing the same as the one for the pump?
printcrafter: Yes. Super thin.
AllisonBlass: I’m going to skip to Michigan mom’s Q just because it fits with this topic. She want to know if it’s like a patch or if there is a small needle. Essentially, how does it attach to you?
printcrafter: HUGE needle. Biggest you’ve ever seen. Like an infusion set the needle is a guide, and is removed leaving a canaula like sensor behind. Not painful, despite how it looks.
AllisonBlass: Reese is wondering what it’s like to wear it during exercise.
printcrafter: Dunno. I’m really bad about excercise. But it has never come off or anything like that. One nice thing, unlike a pump you don’t have to have all the equipment on your body at all times. I’ve got the monitor sitting on the desk in frornt of me right now.
AllisonBlass: “How often, if ever, do you have to do a finger stick now that you’re wearing the sensor,” asks Jon.
printcrafter: That is one of the things they are working on, and I get different answers. Supposed to get that cleared up this week. Minimun is one every 12 hours. there is some thought that 4 per day may be better. But…(again) You also need to do a finger stick before adjusting thearpy (ie taking insulin or gorging on sugar). sometimes the readings are off!
AllisonBlass: Backtracking to the infusion set, Reese would like to know how long the cannula is.
arrgg: I just want to say, your blog is AMAZING. The detail has been so informative.
arrgg: THANK YOU
AllisonBlass: Do you think a teen would be responsible enough to handle all it entails to manage the Guardian safe and accurately? – Ellen.
printcrafter: Depends on the teen. If she/he can handle a pump, they’ll be OK with a Guardian. I find it easier. There are options you don’t need to use too.
AllisonBlass: Scott asks, “Previously you mentioned that it measures BG via interstitial fluids, which has proven to be delayed in measuring lows. Should I presume that Minimed has found a way around this limitation?”
printcrafter: Yes for the most part. The probable error rate increases as the low alrarm threshold gets lower. That having been the case, it has only missed one low for me. More on that… I woke up one morning at 65 BG finger stick. Guardian had me at 90. I was soooooooo pissed off. But later when I downloaded the graph I could see the fluid level dropping. Another minute or two and the laram would have gone off.
AllisonBlass: Jon wants to know how often you change sensors.
printcrafter: New sensor every three days.
AllisonBlass: Aren’t you tempted to make insulin doses based on the readings on the Guardian? You are human. – Ellen
printcrafter: No. Never. Sugar doses on the other hand….well I have done that. But low terriroty is my problem. I don’t get high enough to need insulin corrections very often.
arrgg: So you’ve never taken insulin premeal based on the guardian reading. Interesting:
AllisonBlass: Gina wants to know how it is to shower with the pump and the Guardian.
printcrafter: I take my pump off to shower. The Guardian sits on top of the tolite tank. I’m only showering with the transmitter. No big deal. Probably lucky I’m not single….not too sexy. But no trouble. More on Ellens…. I have to get the BG data into the pump anyway. So I pretty much have to do some work before I eat. No big deal to take a finger stick. No temtation. When a low alaram is going off at 3 am on the other hand, it is very tempting to reach for the candy.
AllisonBlass: Print, Reese wants to know what enhancements need to be added to the Guardian.
printcrafter: Better software. Smaller transmitter. Those are the two biggies. The sensor can probably get better, more accurate over time.
AllisonBlass: Jon asks, “How far away can you be from the monitor before it loses the signal?”
printcrafter:Six feet. You won’t loose the link, however unless you are more than 6 feet for 15 minutes. If that happens you have to do a search to link the two again. Small hassle.
AllisonBlass: Ellen ask, “With a 5 star rating scale, how many stars would you give it?”
printcrafter: Four. Or may be 3 and 9/10s stars.
AllisonBlass: Scott asks, “Would you say the bigger benefit has been the warning of impending lows, or helping you to dose insulin more accurately or the trend analysis or is it a toss-up?”
printcrafter: So far, the warning aspect. I’ve just begun to make longer-range thearpy adjustiments. In the long run, however, those will probably do me more good. If my control is better, less lows, right?
AllisonBlass: Reese wants to know if this is just a temporary trial or if you get to keep the Guradian for-EVER! emphasis mine)
printcrafter: You’ve been watching Sponge Bob, havent you? I bought and paid for it, so I guess it is forever.
gina: can i borrow it. lol
AllisonBlass: How much did you pay?
Reese: are you going to keep using it?
printcrafter: $2790 for the system with the first month of sensors.I will keep using it unless I find over more time that… I have senosor trouble. I had one bad one. It that happens rarely, no big deal. If I get one bad one per box I’d get disenchanted rather quickly.
AllisonBlass: Ok, you guys, Gina’s ready to get hot ‘n’ heavy. 😉 She wants to know: Is it difficult to have sexual relations while connected to two devices? Has it ever alarmed during sex?
printcrafter: Well, I’ve been married for 17 years so I don’t get any sex anymore….
gina: lol. too bad.
reese: print’s not laughing
gina: kissssssssses for printer. poor guy
AllisonBlass: <b>so that would be a no?</b>
arrgg: Maybe you should invite the wife into the shower instead of the sensor 😉
printcrafter: Thanks Gina, that’s the most action I’ve had for a while. And the Guardian didn’t alram while you were cyber kissing me.
AllisonBlass: well, Print, Rio had to come from somewhere…
arrgg: Can’t imagine that Nazi siren going off during romantic times.
printcrafter: But he’s three and a half!
AllisonBlass: Good point.
AllisonBlass: ready for the next?
printcrafter: no. one comment first…
gina: sex sells
printcrafter: it would be better to have an alarm during sex than to be the vicitm of a certin post from E
AllisonBlass: Keeping in theme, Gina also wants to know if you ever feel awkward to have two devices connected to you.
printcrafter: No not at all. But I’m sort of a tech head kida person.
AllisonBlass: What does your wife think about you having two devices connect to you?
printcrafter: She sleeps better since I got the Guradian. We had some scary times receently. she loves my new mistress!
AllisonBlass: Ellen was wondering what the return policy on the pump is, and also if they replace bad sensors free of charge?
printcrafter: First the return. I’m told they have a 30 day return. For those of you following my blog you’ll know I had some trouble (there is a couple day lag from real time in my postings)..
printcrafter: …and Medtroic extended that in my case. Said I could keep it longer cause they want it to work for me, but if I wanted to I could send it packing. Sensors…
They won’t send one for one, but told me if I ended up with several bad ones theyd comp. me a box ($400 bucks). So that sounds fair. I’m hoping I never see antoher bad one.
AllisonBlass: Ok, Bethany’s sending us off with a toughy: If you had to choose between your pump and the Guardian, which would you choose?
printcrafter: I said in my blog early on that I’d choose the Guardian. That was before I had some trouble. Now I’m not so confident. Never had any trouble at all with my pump. Tongiht ‘d have to chose my pump–a Smith Delttc Cozomo
AllisonBlass: Thank you ladies and gentleman for a wonderful program.I hope you have enjoyed this edition of Diabetes Talkfest: The Chatroom! Hope to see you all at our future chats. Next up: Jan. 24 on Pumps with Gary Scheiner, MS CDE. If you would like more information about Wil or his experiences with the Guardian, visit his blog at <a href=”http://lifeafterdx.blogspot.com”>http://lifeafterdx.blogspot.com</a>.
DIABETES TALKFEST WITH PRINTCRAFTER: NOW CLOSED.