August 02, 2007

Why is James not on a Pump?

Anyone who knows anyone with Diabetes knows what a pain it is to manage. How all consuming it is. There have been great strides in technology. Imagine not having an accurate way of knowing your blood sugar level. Imagine having to pee on a strip of paper to know whether you are in control. That used to be the standard of care until all the new portable blood glucose meters were invented.

Now imagine how frustrated you are when you are doing everything the doctors tell you. You eat within the rules, you test frequently, you eat at the same time every day, you follow your scale for insulin shots, and your blood sugars are still out of whack! That is the exact frustration most Diabetics face. Especially small children. Their bodies are changing so rapidly, that it doesn't matter how you follow the rules, you can't get "in control". For no reason at all they can be in the 400's for blood sugars. Then 30 minutes later, they will be 50.

So, then the insulin pump is invented. What progress! Now, instead of multiple insulin shots a day (that have delayed action - and you never quite know when), you can have a vial of insulin attached to you and slowly releasing insulin into your system all day long. At meal times all you have to do is press a few buttons and your "bolus" of insulin is delivered painlessly into your body.

You may think, "Wow, why wouldn't you want to be on a pump?" Well, imagine being hooked up to this medical device 24 hours a day. It's like being on an oxygen pump, but it is hooked to your waist. You have tubes that you have to conceal and if you are a kid, you may need to wear a fanny pack like case all day and all night long. If you go swimming, you need to remove your medical device, and then at the same time go without your insulin. Try sleeping with tubing coming out of your abdomen and you might get tangled up at the night.

Then, let's talk about the cost. You might think since you are not going through all those needles and you need less types of insulin, you might save money. Alas, that is not so. You still have plenty of supplies that you need to keep in stock. Every three days, you need to re-insert your "cannula" with an infusion set that delivers the insulin into your body. These aren't cheap. And we are not even going to talk about the cost of the pump itself. And then on top of that, you still need to keep syringes around just in case the pump malfunctions or if you are off the pump a lot.

Generally speaking you have to jump through hoops to get your insurance company to cover the pump. That's a ton of fun. Then, try to decide what type of pump is good for you. Personally, they all turn me off. Who wants this clunky beeper looking thing with all this tubing attached to you, just so you can eat when you want to? Just so I can leave my kid with other people who aren't trained to take care of him at meals. My son's numbers aren't all that bad. I can understand if you are always at great risk, but James is not. I asked some parents of kids with pumps how their children's blood sugar numbers were. They hesitated and told me that their averages still weren't that great. Again, the pump is supposed to be so much better for a Diabetic's health, but I just don't think that is necessarily true for kids. They also said to get your kid on the pump before they were old enough to object. Soooooooooooo, is the pump for the kid or for the parent? If I'm taking the hit for this invention, it had better be to get my kid's numbers in the optimum range at least 75% of the time.

So, the pumps that have been out there have not really sparked my interest. But, now, there is one that has me interested. It is the Omnipod. It is small. It can be hidden. It is controlled by a remote device which is also your meter. It doesn't have tubing. It doesn't have a separate infusion set. It is waterproof. It doesn't require a ton of extra supplies and equipment to haul around. It has automated injecting! A mother's dream. But, guess what? Since I live in Nebraska, I can't get it yet. Doesn't matter how much money I have, they won't sell it where they don't have reps set up. If I live on the coasts, I'd be okay, but, once again, since I don't live in a huge population center, I'm screwed. Since I live in little ol' Omaha, I have to settle for older technology. Ain't that nice.

So, when people say to me, "All your inconviences can go away if you just get the pump", I want to scream. No, they wouldn't. We'd would just be trading inconviences. I'm not going to settle for something that isn't perfect.

And we aren't even go to talk about the artificial pancreas yet. Because, that is what would really be ideal. What's the hold up with that? And then, once they get that figured out and approved, guess what, it will only be approved for adults, not children. We'll have to wait another year.

So, I guess that is why we stick with shots. No one gives us the runaround with those. Maybe I'm just beat down. Maybe some day I will want to take on the system. Maybe the technology will catch up with my dream for an easier life for my son. Maybe.

If you'd like to donate to our crusade to find a cure for Diabetes, please go here, and, in the immortal words of the Bartles and James guys, "We thank you for your support."

Posted by James at August 2, 2007 06:08 AM | TrackBack
Comments

I hear you but need to say how much my daughter loves life on the pump. She's 11 and was diagnosed at 8. On MDI she had 6 shots of humalog and 1 shot of lantus every day and she didn't mind it. Like you, I didn't like the "hooked to a machine" stuff and I respected that it's her body and she could decide if she wanted the pump or not. I thought she'd get tangled at night and be uncomfortable. Well, she said no, she had heard rumors about infections, so ok. Then, at one endo appointment, a salesperson showed her the infusion set and how it worked. It was so easy, she wanted to try it! We went to a CWD Pumping Conference, got insurance on board (easily) and were pumping. The difference between MDI and the pump really stood out as I prepared her "You have a child with diabetes under your care" letter for sleep-over summer camp. We had to do so much math before! Now the pump does it! And knowing how much insulin is on board makes picnics and family parties so much easier. And the disposal issues are so minimal! And she can test and treat in the classroom* ... no more time lost travelling to the nurses office. Bottom line, this is the state of the art for insulin delivery and as the mom, I know she should have it. I think you should think about this more. BTY the sleep over camp is not a diabetes camp and she went last year for the first time. We both survived and grew!
*I know she could have injected in the classroom, but I never wanted to desensitize the other kids to needles which should be viewed with a healthy respect.
Good luck with your walk!

Posted by: carol at August 2, 2007 11:28 AM

My boyfriend is on the pump. He switched back to shots for a while, but then it became obvious that his numbers were much better on the pump. It also gives him a lot more flexibility on when and what he can eat. Of course, he is an adult, so I'm not sure if the results would be different in children.

At night, he sleeps with it under his pillow and has never had a problem getting tangled. During the day, he clips it to his belt or sticks it in a pocket. When we go out, he has a messenger bag that he carries all his other stuff in.

So, based on his experiences with the pump vs. shots, I would recommend trying the pump.

Posted by: DogsDontPurr at August 2, 2007 02:48 PM

I was diagnosed with Type 2 diabetes 12 yrs. ago. About 3 years later I was tested again, because of out of control BG, only to reveal I had become a Type 1. It was very hard for me to deal with my new health status. It meant a whole lifestyle change.

After coming to terms with this change and several doctors later, I began to realize this is something that I can manage and only life threatening if I did not rise to the challenge... and we all know how challenging it can get. At times, it seemed like my efforts were futile and very frustrating. I felt like there was never a "means to an end" with weight gain. Going from size 12 to an 18 was a hard pill to swallow.

However, my outlook on diabetes has since changed because of the support of my current doctor and his nurse...and of course THE OMNIPOD Pump Therapy System. I can't say enough good things about it. I have been on this system now for 2 months (I know most think that's not long enough to evaluate) and I feel the best I've felt in years. My sugars are in much better control (a1c-7), I've dropped almost 10 lbs. and have been sleeping better. Besides finding a cure, this new technology is a ray of hope and sunshine in my life. Although I still have to be cognisent of my carbs, this system makes counting carbs so much easier. And the thought of "no more needles" on a daily basis is very cool. Kudos to the inventors of this great system. I love it.

Posted by: Carrie Licciardi at August 23, 2007 05:15 PM
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