Saw a movie, lost a PDM

This blog entry starts with a movie, moves on to digging through garbage and finishes with me feeling like quite a failure... but it has a happy ending and we don’t get too many of those in Diabetesland so they are extra special when they happen.

Valentine’s Day was going to end with us seeing ‘The Lightening Thief’ but instead it ended with me rummaging through the garbage at our local theater.  I don’t know how but I lost Arden’s bag that holds her OmniPod PDM, lancet and test strips, I just didn’t pick it up when we left the theater.  I realized it almost as soon as we got home, I called immediately but it was already gone. I drove back to the theater and dug through maybe 30 trash cans but I just couldn’t find it.  

Arden and I went back again to check the theater after the last show ended but still no sign.  She was so sweet, she walked up and down every isle in the theater and stood next to me peering into the garbage, finally after her nose couldn’t take it anymore she said, “it’s okay Dad, it’s not here, we can just buy another one”.  What Arden didn’t know is that a new PDM costs $500.  

I am, as most of you are aware, a stay-at-home dad.  I haven’t earned $500 combined in the last decade which makes loosing something that valuable much more painful.  First, loosing Arden’s PDM, the thing that literally keeps her alive, made my heart hurt.  It was like it was my job to remind her to breath and I just forgot to.  Second, the cost is a bit oppressive and as I said, that failure is compounded by the guilt I feel of not having an income.  So sufficed to say I wasn’t having a great night.  Though one bright spot (for my midsection) is that I don’t think I’ll be getting a popcorn the next time we see a movie. While I’m commentating on theater food, note to theater owners: no one drinks their entire soda - smaller cups wouldn’t hurt.  I woke up this morning every bit as dejected as I went to bed.

But I feel better now, want to know why?

I made the call this morning to Insulet, the company that manufactures Arden’s OmniPod insulin pump to order a new PDM.  I spoke with a wonderful woman named ‘Audrey’ (Hi Audrey, I hope I spelled your name correctly) and I told her just what I told you.  I said as plainly and honestly as I could, “I lost my daughter’s PDM and it’s going to be difficult to raise $500 to replace it”.  We spoke for a few minutes and I shared with Audrey how horrible I felt for losing the PDM and not being able to generate the funds to replace it.  She put me on hold and when she came back she said the nicest thing that maybe anyone has ever said to me, “Arden’s new PDM will arrive on Wednesday”.

Audrey worked it out with her manager as a one time courtesy to replace Arden’s PDM at no cost.  Not many good things happen in my day, most days are full of type I diabetes stress and pressure. The stress is so palatable sometimes that it permeates to the people around us.  Some days the poor nurses at Arden’s school sound exhausted after caring for her, our family and friends can’t comfortably have Arden over to play and even as I write this my mind is busy worrying if Arden’s BG is stable as she sleeps in today.  Thankfully, today has a bright spot to chase away those shadows.

I want to tell all of you and anyone that will listen that the OmniPod made our lives indescribably better on February 11, 2009 and it continues to, nearly one year to the day later.  Not many companies have a heart but I can say without reservation that, in a life that most days feels full of shadows Insulet and the OmniPod are one of our bright lights.

Insulet is online at - http://www.myomnipod.com/ and if you are a type I diabetic or love someone who is, I can’t recommend enough that you check them out.

Thank you to Audrey and Insulet!  You saved us today and I won’t forget what you did or how it made me feel.

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The following are archived comments from this post. You can post new comments below.

chris cooper

That really is great news. I am so on the fence as to a medtronic or an omnipod. My CDE was just saying they dont recommend many kids use the omnipod because they are so active and they see them get pulled out.

Your experience seems quite different. And the support for Omnipod sounds really good. You really sound like an awesome dad, doing all you can for your sweet little girl.

I probably wont remember to come back and see if you have any thing to add about your omnipod and your posts, so if you get a chance email at clcooper@gmail.com.

thanks!

Diabetic U.S. athlete has a point to prove

BY MIKE BEAMISH, VANCOUVER SUN FEBRUARY 11, 2010

The closet of Olympic cross-country skiing is littered with incriminating paraphernalia: vials, syringes and equipment used by cheats to gain a chemical edge.

But nobody in the sport of skinny skis is more open about the use of the needle than U.S. Olympian Kris Freeman, a New Hampshire native who requires them simply to survive.

Indeed, Freeman openly injected himself in plain view to prove two points: that an athlete with Type 1 diabetes can excel at the highest level of sport. Secondly, Freeman's very public injections were a repudiation of those athletes who shoot up illegally and clandestinely.

Follow Kris on Twitter @ http://twitter.com/TeamFreebirdXC

"Up until two years ago, I was taking 12 shots a day -and I was doing it in the open," Freeman said Wednesday. "In the cafeteria, when all of the teams are sitting together, I'd take out my syringe with insulin and stick myself in the stomach with it. The guys who have cheated in the past did it behind closed doors. They were secretive about it. I'm in the open about it. The IOC knows I use insulin, WADA [World Anti-Doping Agency] knows that I use insulin, FIS [the governing body for skiing] knows that I used insulin. Hopefully, I'll win a medal and everybody in the world will know I use insulin."

Diagnosed 10 years ago with Type 1 diabetes, a life-threatening condition that affects the breakdown of food into energy, Freeman was told to forget about an Olympic career. Yet here he is, a decade later -a 10-time U.S. champion and three-time Olympian talking openly about ending an American drought in cross-country skiing that spans 34 years.

Vermont's Bill Koch was the first and last American to win an Olympic medal in cross-country when he took a surprise silver in the men's 30 km at the 1976 Winter Games -a Halley's comet-like performance in a sport thoroughly dominated by Scandinavians and Russians. Since the Winter Games began in 1924, Norwegians, Finns, Swedes and Russians have won 189 of 216 total medals in cross-country skiing. Of those remaining 27 medals, three have been won by Canada, all since 2002.

"I've battled two stereotypes since I was a kid," says Freeman, 29. "The first was that Americans could never succeed in cross-country skiing. People would say, 'You may have won junior nationals, but you'll get your butt kicked in Norway.' Then I got diagnosed with diabetes, and I was told I'd never race again. I like to prove people wrong, and I like a challenge. This is the best team I've ever been a part of. "

Freeman points to Kikkan Randall, a 27-year-old Alaskan with a swath of magenta-tinted hair who is unique both in appearance and accomplishment. She is the first American woman to win a medal at the world championships.

Then there's Vermont's Andy Newell, one of the world's fastest sprinters, and Freeman himself, who has two fourth-place finishes at the worlds.

"It's not a guarantee that we're going to break through for a medal, but it's so possible," Freeman says. "It's not like we're going to need a freak day to do this. We can do it on a plain, even playing field. It just has to be on the right day."

To get his metabolism right, Freeman relies on the OmniPod, a disposable pump that regulates the flow of insulin to keep him from crippling episodes of unbalanced blood sugar.

"For a 15K, I need three times the insulin to go into my body that I do for a 30K," he says. "For a 15K, I'm almost anaerobic [using oxygen more quickly than the body can replenish working muscles] for the whole time. My blood sugar rises. When I'm aerobic [efficiently transporting oxygen], my blood sugar falls. It's a really delicate balance, depending on the exertion."

He must also be vigilant about getting too amped before a race. "My blood sugar can rise just by sitting there," he says. "So, certainly, the Olympics are going to affect me more. I try to listen to calming music. But it's hard to find calming music I like, because I'm very into heavy metal -Guns N' Roses." Of course, a band with an appetite for booze and hard drugs is in no way an extension of what Freeman represents -an indomitable Olympian breaking down barriers for diabetics. Because skiing truly is in his blood.

mbeamish@vancouversun.com

© Copyright (c) The Vancouver Sun

Photograph by: Richard Heathcote, Getty Images, Vancouver Sun

Borrowed from -http://www.vancouversun.com/health/Diabetic+athlete+point+prove/2549954/story.html

It’s electric... boogie woggie, woggie

This hasn’t been the best week for Arden with her pump, she has experienced three static electricity malfunctions.  Some times if there is enough static in the air the pod can deactivate (it’s an infrequent occurrence).  In the last seven days that has happened at a dinner, the Franklin Institute and during Arden’s yoga class.  When said bed messing occurs the pump is rendered useless and must be changed immediately so that Arden’s insulin supply can be reestablished.  No doubt this sucks but still I must say that it’s a small price to pay for the positives that the OmniPod brings to our lives, things certainly could be worse.  It’s all perspective and attitude.

As Arden grows, new sites appear

If I’m being honest I couldn’t find one healthcare professional to say that using the OmniPod for Arden was a good idea.  They said that she was too small and that her body style would be counterproductive to the way that the OmniPod inserts it’s cannula.  The people that work for Insulet (Omni maker) disagreed and most importantly I disagreed.  

I wanted Arden to use the OmniPod for a few distinct reasons.  Of all the insulin pumps on the market I found it to be the most forward thinking, it takes the best advantage of available technology IMO, it’s BG tester is made by Freestyle and we use and get consistently accurate BGs with Freestyle and it doesn’t have a tube.  Plus, when you choose you have to choose wisely as your insurance company won’t tolerate switching pumps as the are very expensive initially.  

I’m am elated to be able to continue to report that we made the right decision.  Now that Arden is getting bigger her arms are now wide enough to support the pod though as that growth spurt gave us a new site with one hand it took away another site with the other.  Arden now has even less body fat on her abdomen, which is to say she has none - but that’s okay because we gained the arms. 

Looking back I think that what health professionals weren’t aware that the OmniPod will take a bit of extra planning for a few years until Arden gets bigger.  It will be slightly more difficult to find good sites but it is not impossible or even difficult to use on a small child.  What I could tell them now (and am telling all of you) is that the benefits that the OmniPod provides far exceed any impediments that it carries.  I can’t imagine sending Arden to school if she was still getting injections, I think that scenario would have been a total failure, I think we would have seen constant lows and that her ability to learn would have been crushed by the demands of her care.   Arden has a great insulin delivery system and she isn’t tethered to a pump control unit by a tube.  For my money (well for Blue Cross’s money and my copay) you can’t do better then the OmniPod.  I wish I could give one to every child that wants an insulin pump and can’t afford one.  It’s a life-changer.

**

The following are archived comments from this post. You can post new comments below.

Sophia's Mom

I just discovered your blog and I love it, thank you!  My Sophia is 2 3/4 (she'll be 3 in July) and she was diagnosed at 21 months, just over a year ago.  We started Omnipod a month ago and it is amazing.  For anyone considering it for a child, don't hesitate because of body type.  Sophia is extremely thin (28 lbs and 39 inches) and we have had very few issues with finding good sites.  Her A1C was 9.5 in February and I expect it to be around 8 in May.

Monday, April 19, 2010 - 04:17 PM

Time and distance lend perspective

It has been six months since Arden made the switch to the OmniPod insulin pump.  The move to a pump has had many benefits, including lower A1C, a steading of her overnight BG readings and of course the disappearance of multiple daily injections.  But there is another benefit that I have recently become aware of...  We have less stress.

When Arden was diagnosed we did what any of you would do, we followed directions.  We learned how to give an injection and we gave them everyday, most days eight times or more.  I didn’t realize then what I can see now.  Being thrust into a life or death situation takes away the luxury of contemplation.  I imagine being drafted to fight is similar in that you are handed a gun, taught too briefly how and when to use it and then thrown into the fray.  If you dare take the time to question what you’ve been told... you’re dead.

Similarly, we gave Arden her shots.  Two in the morning when she got out of bed.  Another three hours later, then at 2pm, 4pm, 6:30 and two before bed.  Eight times a day we stuck a needle into Arden, my best estimate is that she was stuck six thousand times in the first two years.  I can tell you now what I could not perhaps for my own sanity have admitted then.  It broke my heart every time.  I probably gave 90% of those injections and the experience has left me with an indescribably feeling in my gut.  

Every time Arden eats, drinks, gets into a car, runs, walks, gets quiet, is sad, trips or when it’s just been too long since one of those things has happened, she needs to be accessed.  In those moments it’s as if someone whispers over your shoulder, “Arden has diabetes”.  When I open my eyes at 4am because I heard a noise outside, my first thought is, “I should check Arden”.  When I’m standing in left field watching Cole play baseball and Arden runs over to ask for a dollar... I hear the whisper.  As oppressive as this fact of our life is, it was compounded by the injections. Because after all of the waiting, checking, testing and worrying I had to take out a vial of insulin.  The vial is swabbed with alcohol and the needle is uncapped while the numbers run through your head, “her BG is 189, there is 40 minutes left on the last injection, she wants to eat a hot dog, hot dogs have no carbs but the roll is 23 carbs unless it’s a potato roll and then it’s 26, what if she doesn’t eat the entire hot dog?".  Then I hold the vial up to my face and extract the insulin, tap tap on the needle, turn to my baby and jam it into her body.  8 times a day.  I can tell you that takes a toll on your soul.  I couldn’t say any of this before the OmniPod because admitting it would have taken away my ability to give those injections - but that is all gone now.

Today, we test Arden and tell the pump how many carbs she will eat and then press a button.  Arden’s insulin pump didn’t take all of the worry out of diabetes but it has significantly lessened our stress.  

Insulin pumps aren’t covered by everyone’s insurance and they are quite expensive.  Children who are un or underinsured are incapably of getting the relief that I described here...  I have been profoundly impacted by the benefits of insulin pumping and saddened by the fact that they aren’t, because of financial constraints, available to everyone who wants one.  I am at the moment not sure how but I want to find a way to change that...

Update on Saturday, September 24, 2011 at 10:38AM by Scott Benner

This blog was linked via Twitter and FaceBook on 9/24/11 in response to a conversation that I had with one of the readers. If you are reading it now... it is not been six months since Arden switch from MDI to OmniPod as the blog indicates but over two years.