TYPE 1 DIABETES

[nutsnberries]

Reading this forum on and off over the past couple of months, I'm curious about something and I'd like to pose a question.
Several have mentioned Diabetes. I'm not always sure if people are talking about Type 1 or Type 2,
but it seems as if there are people here on daily injections of insulin.

(first, for those that are reading this but aren't familiar with the *types*, paraphrasing the ADA site's explanations> TYPE 1 was formerly known as Juveline Diabetes. With Type 1, the body does not produce insulin. Insulin is necessary for the body to be able to use sugar. Sugar is the basic fuel for the cells in the body, and insulin takes the sugar from the blood into the cells. People with Type 1 diabetes are dependant on subcutaneous delivery of insulin to move the sugar (glucose) to fuel the cells. TYPE 2 is also known as age-onset diabetes and is much more common. In type 2 diabetes, either the body does not produce enough insulin or the cells ignore the insulin. This makes glucose build up in the blood instead of going into cells. Both types of the disease need to be managed to try to avoid the many complications that can arise from diabetes.)

Back to my question, which is mainly for those with Type 1, altho some with Type 2 are also candidates for pumps:

How many are using insulin pumps? If you don't, Why not?

There are many misconceptions about insulin pumps.
They are not JUST for people with bad blood sugar control.
They are not JUST for people with great blood sugar control.
They are for anyone that will test their blood sugar several times and day, and count carbohydrates,
and would like to take some lifestyle freedoms back from diabetes.
Since people with Type 1 really should do both of those things anyway to keep themselves healthy...
If you've got health insurance to pay for the pump - talk to your doctor about it,
and give it some good consideration.
With some knowledge and effort, you can make not-so-good HbA1c better,
and good HbA1C is going to remain so, but you will have flexibility about when and what you eat again, like pre-diabetes.
The diabetes doctors I am familiar with recommend them for all of their patients with Type 1 diabetes, with very few exceptions.
The only exceptions are with those patients that won't test their blood sugar, and count carbs.

I don't have diabetes. I'm not a doctor, or a diabetes educator, and I don't work for a pump company, etc...
I just have some knowledge of this.
I may be able to answer some of the practical questions you may have about switching to an insulin pump.
Most people on pumps don't think being *teethered* to the pager-sized pump is a big deal.
I think they are great, and a step towards freedom from the constraints of diabetes.
Someday there may be a pump that also does continuous glucose monitoring and adjustment
and maybe that would lead to an implantable artificial pancreas.
Or maybe the cure will come another way. Implanting islet cells... maybe stem cell research will bring the solution...
I don't know, but I am confident things will continuously get better for managing diabetes.
Take good care of yourselves so you're in great shape when the cure comes!

this is just something i found on a quick search which i thought was worth sharing:

http://mmore.hyperboards2.com/index.cgi?action=display&cat=Diabetes&board=care&thread=1031224119&start=0

and this is the ADA's overview on pumps:

http://www.diabetes.org/type-1-diabetes/insulin-pumps.jsp

[Jokinomx]

1. Thanks Cosmicbandita...

Both my Wife and Daughter are Type I diabetics. My wife since age nine and my daughter since age 10...

They both are in the process of evaluating whether a pump is feasable for them. We all will follow your links and further our understanding of these pumps.

What really bothers me is that the medical profession has found a cure... injecting the islets of langerhans from a cadaver into the body of a diabetic. They attach to the liver and start producing insulin again. I know its a new and experimental procedure, but some of those that have had it done have been insulin injection free for over a year now.

The only draw back is that those that have this done have to take anti rejection meds for the rest of their lives.

Anyway... thanks for the information and the links... I am sure my wife and daughter will find them useful.

BTW ... Welcome to the Underground... I hope you enjoy your stay..:-)

:kick:

[Donkeyboy75]

2. Hey Jokino...

I have some relatives with juvenile diabetes. You have my sympathies. It's a real bitch.

The information you have is partially true. I worked on an intimately related project as part of my Ph.D. thesis. These studies have to be reproduced, and are quite preliminary.

However...anti-rejection meds have at least six serious side effects...not the least of which is that they are carcinogenic.

The other more obvious problem is that there exists a shortage of organ donors...and the islets from many of these pancreases are unsuitable for transplant anyhow. Even if optimized, the islet supply would only meet about 0.1-0.5% of the current need.

I worked on - and other groups are working on - a procedure to encapuslate pig islets in a protective coating that will shield them from the body's immune response but allow them to release insulin upon glucose interrogation. Unfortunately, this procedure will be 10 years down the road at the earliest. A lot of bugs still need to be worked out.

PM me if you would like more information or references...and some other approaches that are being taken.

:hi:

[Jokinomx]

10. Thanks Donkeyboy75...

That is what I needed to know. Which is worse...being diabetic or taking anti rejection meds for the rest of your life.

My wife is fortunate to have been able to control her sugars very well over the years. The only time it really became a problem was during her monthly cycle. Her sugar levels would drop severely fast and critically low. Anyway... she had a hysterectomy and that leveled things off.

My 17 year old is on the same regiment as my wife... they are on two shots a day with additional shots as needed. They both have done well with this system... but my daughter has had somewhat high A1Cs...

Thanks again for your input..it really did answer my question about why this new procedure has been more widely used.

I keep hearing that "5 to 10" year figure for a cure... and that was twenty years ago...

Hopefully one of these days... with stem cell research ... we wouldn't have to worry about the immune system attacking a new pancreas.

With that... :toast:

Kerry On...:-)

[Donkeyboy75]

14. There actually have been some promising results

with stem cells in mice. They don't form islets per se, but insulin-producing cell masses. That's one to keep your eye on as well.

You're right about the ten year observation. I think that's a bit too optimistic right now.

[nutsnberries]

15. unitl a cure,

continuous glucose monitoring is coming a long way.
MiniMed has a continuous monitor that is used for 3 days at a time for fine-tuning treatment plans for pumpers.
http://www.diabetesmonitor.com/cgms.htm
But it's a separate device.
A pump with a sensor that continuously monitored blood sugar and worked with the pump can't be far off.
It would be great, because the key to good HbA1c.... TESTING- to personlize your insulin dosing, with or without a pump.
There is no way around that, without a cure!

If you only test 1,2,3 times a day, you really don't know what your blood sugar is doing in between tests, and high numbers in between tests will reflect in your HbA1c.
My daughter tests about 6 times a day. She's pretty good about it, but I know it's NO FUN!

short of continuous monitoring, non-invasive means of testing will make testing easier.
The FDA has approved the GlucoWatch but my daughter's doctors don't use it and don't recommend it.
I've heard of breath analysis of glucose too.

[nutsnberries]

4. hi Jokinomx

injecting the islets...it does sound promising, i read about it a while back when a doctor mentioned it.
but the anti rejection meds worry me a bit, maybe i just don't understand it well enough.

My daughter was diagnosed with Type 1A (autoimmune) diabetes when she was nine.
She had good blood glucose control on injections and switched to a pump 2 years ago.
Now she's 13 and she loves being on the pump.
No more eating schedule and no more waking up to eat at a certain time...
Your health care provider will help you customize your basal (background) rates 'round the clock,
and help you determine carb ratios for bolusing (giving additional insulin for food).
You can program a pump for different rates for activities (or any personal trends you know of), and do a quick-disconnect for swimming or showering.
There is math involved, but it's not much of an adjustment for someone already accustomed to figuring insulin.
With a fast acting carb on-hand (like glucose tabs) for any lows, you can learn to reduce the basal rate temporarily,
instead of adding a slow-acting carb if you won't be eating soon.
You can really get great control WITH a lot of freedom, especially if you tune in really well
to what goes on with your blood sugar numbers with foods, activities, and cycles.

My daughter's doctor and nurse educator are both women in their 50s who have had diabetes since they were children, and they are also on pumps.
It's good to have that team that understands things first-hand. We really like them.

There's lots of info on the internet... search insulin pump therapy.
Thanks for the welcome! Good luck!

[Jokinomx]

11. We (wife and daughter) will have to discuss this issue more

indepth.. I really appreciate the personal experience information.

:toast:

[amandae]

3. My mom has Type I diabetes and has used a pump for years

She developed Type I diabetes in her thirties; her doctor actually suggested that her high stress personality could have triggered it in her (she worried to the point of crying over grades as a child, VERY stressful home life, led to stressful life as an adult, etc.).

Anyways, I can't even remember how many years ago (seems like it's been many years) she got her first pump. She's fortunate enough to have an insurance plan that covers it and most of her diabetic medical costs. It works great for her because she had developed to the point where she was having to give herself MANY shots of insulin a day and with the pump she just presses buttons to receive her injections. It's a lot easier for her, but she has to be careful of infections at the sites of the injection (needle attaching the tube from her belly to the pump). She's had a few of those and any infection for a diabetic isn't a good thing. They're puncture wounds so can't be treated with neosporin and a band-aid.

Anyways, I agree that it has been freeing ... although I am a strong supporter for the research necessary (stem cell or whatever) to discover a cure for diabetes.

:hi:

[nutsnberries]

5. hi amandae,

does your mom change the site as often as she should?

for children, every other day.
for adults, i think they can go to 3 days?

we haven't experienced any site infections. but it is something to watch out for.

one thing my daughter's doctor doesn't recommend is swimming in a lake or pond with a site on - to avoid infection.

Research - yes!
My daughter and I ran into Ron Reagan on a Boston street the night after his convention speech.
We thanked him for making the speech. :)

[amandae]

13. Hi cosmic!

My mom does change the site every few days, but she's a letter carrier so I think some of her problems have been related to work (rubbing against the site too often with her mailbag or whatever she is carrying, etc.). The infections aren't often, but when they happen she keeps a good eye on them.

My fingers are crossed for a cure in my mother's lifetime. When I'm in a better financial state (out of school - whenever that happens, lol) I'd like to donate heavily to diabetes research. It affects so many people ... and now that my mother has it, I think about the family link and look at the possibility my children could have it, too. It's something horrible to see your loved one in the hospital for high blood sugar, or their reactions to low blood sugar. Or to just know what health problems they can have being diabetic. Makes you want a cure even more.

:hi:

[nutsnberries]

16. it's coming, i really believe it..

yeah, support research.

i really have to focus on positives and helping my daughter to maintain good control (and making it seem easy at the same time!)-
of course, i don't like thinking of complications, but we have all of the various and routine tests done that she is supposed to have.
Her doctors are very positive. They remind us how much better testing and new insulins are making things for today's diabetic children.
They believe the younger ones won't see the same rate of complications because of advances.... as long as they take advantage of them.
We remember we're fortunate to get good care.
Besides her initial diagnosis, we haven't had any hospital stays, and have only had one incidence of a severe low.
Luckily, she came out of it quickly when I gave her some frosting (little tube we keep in her kit), so we didn't have to resort to the Glucagon.
You're right though, seeing her that way, that one time was soooo frightening...
She was so *not there* and so totally dependant on my recognizing her need for help while she slept.
It all came about because she had spent a whole day swimming and walking in the sand at the beach,
and it was before we had learned just how delayed her body's reaction to activity could be.

positive thoughts and a :hug: to you and your mom, amandae

[Jokerman]

6. My wife is a Type 1 & been on the pump for almost two years.

She's much happier on the pump than with several injections each day.

[Jokerman]

7. duplicate

My mouse click finger must have been a little twitchy.

[mzmolly]

8. My husband it type 1 and he has a pump ...

He prefers it to insulin reactions, which he had issues with before. :hi:

[CornField]

9. My hubby is also a type 1, currently no pump

He was diagnosed about 10 years ago... so he'd have been 22 or so.

He has enrolled for some information classes through one of the local hospitals. I think one of our major issues will be cost -- we aren't sure what part (if any) insurance will cover.

[LynzM]

12. I'm type I,

Been on and off the pump twice. First time was end of high school into the beginning of college, about 2 years. Second time was during pregnancy through about 3 months post-partum. Both times, I had great control (A1C of 5.9 during pregnancy!!) while on it, and loved the flexibility. I didn't particularly enjoy being attached to something all the time, but it's something you get used to. Eventually, both times, I developed some hypertrophy and absorption issues, and was running ketones and having to change my pump site twice as often as normal (or more). It got to the point where I spent way too much time feeling sick and dealing with it, and worrying about it. It actually made it harder to not worry about my diabetes, when it reached that point. That's why I'm back off of it. Bummer for me, but I'd really recommend giving it a try if it's a financial option for you. The new pumps are really fantastic!!

[nutsnberries]

17. thanks for the responses,

it's good to know your stories.

Take care everyone! :hug:

:*

[Zookeeper]

18. My 12 year old daughter was diagnosed with Type 1...

a month after her fourth birthday. Her A1Cs have been high over the last year, possibly due to changing hormones. She missed about a month of school last year due to high ketones that were triggered seemingly by next to nothing.

She's on Lantus and Humalog now, in preparation for getting the pump. However, her Dr. won't prescribe it until she gets back on track as far as her record keeping.

Kerry would benefit from speaking out more on the stem cell research issue. How many people are affected by Diabetes, Alzheimer's, Parkinson's, spinal injuries, etc? I sent Edwards a list of organizations that support stem cell research six months ago, and pointed out that each of those org.s are made up of people who are desperate for a cure for a loved one or themselves.

Thanks for posting, Cosmicbandita! :hi:

[nutsnberries]

19. hello there, Zookeeper!

I hope things go well for your daughter so she can get on a pump soon.
Hormones can make things so tricky. My daughter has had times where her blood sugar goes up for no apparent reason,
especially last year on & off during a time before she got her period for the first time.
Now that she has a fairly regular cycle, we know when to expect her numbers to go up, and use a temporary basal rate on her pump.
(btw, i guess it helps if people know that pumps just use Humalog)
We set the pump to a programmed rate we've made that delivers 20% more of her basal rates on days we'll know she'll need it.
(basal insulin is continuous background insulin. Your daughter will probably have different basal rates thruout the course of the day according to her personal trends.)
Then we back it off to 10% more when her numbers come down a little because of the change in hormones.
Then back to her regular rates when her numbers come down further.
It works pretty well. You have to stay in tune. and test. Eventually you get confident to make changes based on what you learn.
Since a pump is dispensing a medication, my daughter's doctors really don't want her, at 13,
responsible for decision-making on her rates without my help, but it comes slowly in time.
With help and knowledge and experience, things keep getting better for us.
I hope for you and your daughter too!

[Zookeeper]

20. Thanks, Cosmicbandita...

If you ever want to compare notes, feel free to PM me! :hi:

[blondeatlast]

21. I've been pumping for about 5 years now. I LOVE it.

I've been on insulin since I was 7 and I'm in my mid-forties now.

And as an aside, our Dem precinct captain had a pancreas transplant 10 years ago and is THRIVING.