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bookDiabetes articles about daily topics that affect those living with diabetes. There is a lot of information about diabetes and hopefully you find this information useful in your everyday life. Here we have compiled a list of older articles from our previous "The Diabetes Network" along with links to blogs and articles, an extended reading archive. You can use the search in the top-right menu to search for specific articles.

 

Practice, Practice.....

I expected the "I'm free".....I didn't expect the second line. It made me realize how different he must feel all the time. So....I'll have to add another positive to MDI!!:)

This morning I began teaching the rest of the family how to take care of J.J. on MDI. When J.J. was first diagnosed they were all really too shocked and scared to want to learn. We didn't push them, but hoped they would step up. Eventually they did.....to a point of wondering if it was too much!:) Today they jumped in.....no fears(o.k. a few!)......but they have much more confidence now that they could give a shot without really, really messing up.


I had them practice using an old Lantus vial, used syringes and a clementine. Granted they can't pinch the skin of a clementine, but I had them simulate the effect. I also wanted to make sure they understood what calibration was on the syringe. I would throw out a dosage amount and ask them to draw it up for me. Thankfully I did that, because both of the girls thought the first line was "one" not "zero". So they would have been a unit off!!


J.J. even wanted to give it a try. I drew up the dose and let him inject it. Right now he's a little clumsy, being he's only 7 and his dexterity isn't quite what it will be in a few years......but I think he could do it. I don't think I'd let him draw up the insulin yet, but we shall see! For now he's where he should be.......out in the dirt pit......FREE...to be....a REAL BOY!!!!:)

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Islet cell transplants can be cost effective as well as increase the quality of life- a study

I recently found this abstract and thought it was very interesting and exciting. I was able to get a copy of the entire article from a friend, thanks Jason, but can't print all of it due to copyright laws. I am going to attempt to write about the highlights of what this shows. A health economic analysis of clinical islet transplantation

Keywords:

  • cost;
  • cost-effectiveness analysis;
  • economic model;
  • health economics;
  • islet cell transplantation

Beckwith J, Nyman JA, Flanagan B, Schrover R, Schuurman H-J. A health economic analysis of clinical islet transplantation. Clin Transplant 2011 DOI: 10.1111/j.1399-0012.2011.01411.x. © 2011 John Wiley & Sons A/S.

Abstract: Islet cell transplantation is in clinical development for type 1 diabetes. There are no data on the cost in relationship to its benefits. We performed a cost-effectiveness analysis and made a comparison with standard insulin therapy, using Markov modeling and Monte Carlo simulations. The patient population was adults aged 20yr suffering from hypoglycemia unawareness. Data were estimates from literature and clinical trials: costs were based on the situation in the United States. For insulin therapy, cumulative cost per patient during a 20-yr follow-up was $663000, and cumulative effectiveness was 9.3 quality-adjusted life years (QALY), the average cost-effectiveness ratio being $71000 per QALY. Islet transplantation had a cumulative cost of $519000, a cumulative effectiveness of 10.9 QALY, and an average cost-effectiveness ratio of $47800. During the first 10yr, costs for transplantation were higher, but cumulative effectiveness was higher from the start onwards. In sensitivity analyses, the need for one instead of two transplants during the first year did not affect the conclusions, and islet transplantation remained cost-saving up to an initial cost of the procedure of $240000. This exploratory evaluation shows that islet cell transplantation is more effective than standard insulin treatment, and becomes cost-saving at about 9–10yr after transplantation.

This study has attempted to compare the cost of managing Type 1 diabetes by intense insulin therapy to the cost of intervention with an islet cell transplant. Also woven into the design is how both affect the quality of life.

It begins with data on islet cell graft survival. I converted their graph into a chart.

one year results: full function= 93% partial function= 8% no function= 0%

five year results: full function= 47% partial function= 37% no function= 17%

ten year results: full function= 27% partial function= 49% no function= 24%

This shows that most recipients make it to one year, and half make it to five years with no insulin.

And that half make it to ten years with at least partial function.

This is very positive. Its personally disappointing to me because I am behind the curve. I only made it 2 years with no insulin, but it gives me hope that I will remain where I am for awhile which is still at a very good place. This data reflects what I notice from the cast of characters on the islet cell recipient facebook page as well.

The Quality of life variable was very complicated and I am going to simplify it greatly. It was comparing how the hardships of each treatment affected the quality of the patient's life. The values ranged from 0 which is worst to 1 which is best. The values that I thought the most interesting were:

A healthy person aged 25-34 had a quality of life valued at 0.91

A diabetic aged 25-34 had a quality of life valued at 0.81 If this person had hypoglycemic unawareness, which all recipients do, a reduction of 0.06 put this pt at a 0.75 quality of life.

From here, adjustments were made base on diabetes causing complications that the insulin group would face, and side effects and graft failure issues that the transplant group would face. A graph shows a mostly parallel line with the transplant group slightly ahead of the insulin group.

Then came the cost analysis. The numbers themselves were stunning.

Cost of the organ procurement was $25,000.

Cost of harvesting the islets was $20,000. with a 50% success rate means $40,000.

Cost of immunosuppression was about $1400/month

Cost of transplant was $93,500. Each successive year was $19,000.

Cost of insulin therapy/year was $6,600. The cost of having complications varied from $106,000 for renal failure to $1,400 for neuropathy.

Combining these two variables shows that initially the transplant is more costly. But, over time, as the cost of the transplant stabilizes, the cost of insulin therapy and its long term complications increases. This study covered a span of 20 years. At about 9 years, the costs intersect and the islet cell transplant remains the lower cost option.

Interesting numbers here were:

20 year cost of insulin therapy was $663,000. Quality of life years gained was 9.1.

20 year cost of islet cell transplant was $519,000. Quality of life years gained was 10.9

The article goes into much more detail, but these are the highlights. It also includes a discussion about how the transplant procedure is expected to improve. This has already proven to be true in that due to a change in an enzyme used in the harvesting procedure, more islets are now obtained per pancreas than when I had my transplant in 2008. And there is much more on the horizon............

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Dream a little dream- Life after a cure... Diabetes Blog Week- Day 7 (Ha! I did it!)

Lightyears ago, when I was working in a little used bookstore on Queen Street, my boss told me this story about his brother... He said that his brother had a form of epilepsy. I don't remember the name of it exactly, but he had frequent and severe seizures. He was on a fair amount of medication to curb them, but at some point brain surgery became an option. So, he went through with the surgery and the doctors were fairly certain they'd removed the part of the brain that was responsible for the seizures. He was so terrified of them returning though, he refused to stop taking the medication they'd first prescribed him.

I tell you this, because it was one of the first things that came to my mind when I read this final topic for the Diabetes Blog Week was this story. And, honestly, if suddenly the perpetual five-year-plan until the cure for diabetes was up and sitting there was a cure... I think I'd still be testing my blood sugars for a good long while after: Every time I got thirsty. Every time I felt tired. Every time I got shaky. And, yeah, it would probably subside a bit over time, but I'd always wonder if and when it were coming back.

Another story that came to mind: when I started using an insulin pump it totally a positive change for me... physically. For the first time that I can remember I wasn't tired all the time. I think I mentioned somewhere here before, but when I told one of the nurses/diabetes educators helping make the transition to the pump she told me that this was fairly common. Apparently long acting insulins are pretty hard on your body. NPH, the crap stuff that I was on for a large part of my MDI routine, is notoriously nasty... which why it is affectionately referred to as "Not Particularly Helpful" amongst some medical professionals. That plus the fact that I spent years with impossible to avert daily lows, some of which were so low I felt like they were digging my grave for me, I got kind of pissed off that it took sooooo long for me get on the pump.

Actually, I don't even think I realized until I just wrote those words, that a lot of my anger when I got my pump was probably related to me being resentful for all those years of crappy insulins (remember the infernal Regular and Lente???) and multiple daily injections. I know it works great for a lot of people. But, really, that stuff was my own private hell, which is something I couln't realize until a better way of being came along... kind of what I think the shift from insulin pump to cure would be like...

Finally, my very first knee-jerk reaction when I read the topic for today's post: I've met so many awesome people because of my diabetes, I have to admit that I had a moment of sadness thinking that our relationship might go away without the common link of illness. Which I know isn't true- I think the relationship would just change. We might not have the same day to day struggles with the "D-beast", but I think we'd always have the lingering link of being ex-D-beast peoples. At least, I hope we would all stay in touch. I would miss you guys if you all went away. I guess the second thing I realize as I write this- my online D-friends aren't just diabetes support; sometimes you guys are life support. Which is great, so I wouldn't want that side-effect to be cured along with the broken pancreas.

Anyway, I don't mean to end the week on a bummer note. Nor do I don't mean to suggest that I wouldn't jump at a cure in a nano-second or that I wouldn't be happy (extremely happy!) or grateful. I think, though, that having recently just made the shift from needles to insulin pump, the reality of good things sometimes being a mixed bag is still very much a reality for me. And, maybe like most things in life, it's just complicated.

Here, though, I'll end with some happier thoughts:
- Having said all that, I'd totally test the limits of my new found food freedom by a one-time gorge on deep-fried ice cream. I don't know why, but I really get a hankering for that stuff every now and then... and cherries. I really like cherries... and pie. Cherry pie, of course. Stawberry-rhubarb too. Pie is one of the worst things to carb count.
- I think I'd also keep my pump by my pillow as a nightlight, 'cause I've gotten kind of attached to the little guy. I might even wear it around in public occassionally and tell everyone it's my new super gigantic pager...
- And my last, somewhat perverse thought? I'd tell everyone my diabetes was coming back in five years... just so that if it really were creeping back, it would take it's dear sweet time about it.

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JDRF Walk to Cure Diabetes

Greetings!

I'm writing to you to ask for your support in a very special cause.

This year, I'll be taking part in the Juvenile Diabetes Research Foundation's Walk to Cure Diabetes along with a half-million other walkers across the country. Our goal: To raise $90 million to help fund research for a cure for type 1 diabetes and its complications.

Type 1, or juvenile, diabetes, is a devastating, often deadly disease that affects millions of people--a large and growing percentage of them children.

Many people think type 1 diabetes can be controlled by insulin. While insulin does keep people with type 1 diabetes alive, it is NOT a cure. Aside from the daily challenges of living with type 1 diabetes, there are many severe, often fatal, complications caused by the disease.

That's the bad news... and yes, it's pretty bad.

The good news, though, is that JDRF is making steady progress toward a cure. In fact, JDRF funding and leadership is associated with most major scientific breakthroughs in type 1 diabetes research to date. And JDRF funds more type 1 research than any other charity worldwide.

I'm writing to ask for your support because now more than ever, EACH of us can be a part of bringing about a cure. Each of us can make a real difference

Won't you please give to JDRF as generously as you're able?

Together, we can make the cure a reality.

Please visit my Walk Web page if you would like to donate online or see how close I am to reaching my personal goal:

Insulin: Shaken, Not Stirred

Thank you!

*Peace.

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BIG BLUE, PART 2

I'm well aware that I have never been without any medical supplies.
Growing up my dad had amazing health insurance coverage and we had closets (yes, plural) filled with supplies.
Now grown up and on my own insurance,
I am again, blessed with everything I need.

* All it took was a phone call from my doctor to get set up with sensors and my continuous glucose monitor.
* My pump just ran out of warranty in August.
* One phone call and I was upgraded to the newest model.
* I even got to choose the color I wanted (pink!), and it was sent to my work just days later.
* My insurance was so good in fact, that after turning in my old pump, I had a credit of money on my account...so essentially, I got paid to go on an upgraded pump.

Not everyone is as fortunate
and some even lack a basic needle and vial of insulin they need to keep them alive!!!

BUT...many people and various organizations have come together to make it possible for children with Diabetes in some of the poorest countries to receive the insulin they need.

And to make it happen, all you need to do is watch this video:

Up until November 14th (World Diabetes Day), money will be donated to this cause.
Read the press release here to find out more info:
Thanks for doing your part.

GO BIG BLUE!!!!   :)

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What your parents said

Last week I was invited to be a speaker at a local camp for families with diabetes.
There were four groups of children(as well as their parents), divided by ages . In preparing, I created a sheet that asked a series of questions.
Namely,
1. The easiest thing about dealing with diabetes is..
2. The hardest thing, etc....
3. The best thing, etc.....
4. The worst thing, etc.....
5. I wish my child knew....

The parents had the above questions, and the kids' sheets had the same questions, but the 'tense' was altered. For example, Q.1 read, "the easiest thing about having diabetes is..." and the last question was, "I wish my parents knew..."

Being that the responses were anonymous, I had hoped for honesty. What I got was beyond what I had hoped for. Here's a sampling of the parental responses...

The best thing about dealing with diabetes is...
-"There is treatment for the disease my son has."
-"Seeing the courage my daughter has.."
-"you can still do the same things that everyone else does"
And more than one parent said plainly,
-"nothing"

The worst thing about dealing with diabetes is...
-"dealing with potential restrictions on future activities."
-"missing activities with other children."
-"having it for the rest of your life??"
-"not knowing the future."
-"feeling like I am always bugging him about his sugar (level) or treating."

Now, let me address some of these answers: diabetes should not restrict or hinder you from anything. That's outdated info. Kids with diabetes do not need to miss anything. Further, we are on the cusp of the cure. As I said at camp, THERE HAS NEVER BEEN A BETTER TIME TO HAVE DIABETES!!

Not knowing the future can cause anxiety in anyone (with diabetes or not), but faith and a secure foundation can really counteract your fears.

And finally, "I wish my child knew..."

-"I would trade places with him if I could.."
-"How smart he is.."
-"how proud of her I am."
-"highs and lows will still happen even if you do everything 'by the book'"
-"there's nothing she can't do"
-"by not testing and taking care of himself how he is hurting his body."

These answers reveal much of what all parents feel for their kids. How many of us would do anything to take away our child's hurts, fears, or struggles?
Now compound that with a chronic disease that takes no prisoners, and the helpless feelings must multiply.

Yet there is another side to these answers that shows how diabetes affects more than just the diabetic. It affects the whole family, and includes friends, classmates, and more. Education is real power when it comes to effectively managing diabetes. There's no reason a child today should feel limited or inhibited in any way by diabetes.

All of this reinforces the conclusion I had previously reached, which is everyone with diabetes should be on the insulin pump.

It allows freedom and flexibility; but most importantly it is the best tool we have today to treat diabetes.

Stay tuned, because the next post will highlight what all the children with diabetes had to say, and you are NOT going to want to miss it!!

Until there's a cure, there's the pump.

That's why iPump.

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