Looking for advice and insights from pump users please

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1

Hi Everyone,

I am a T1 since 1975, and was diagnosed with hypothyroidism in 1991.  I am currently using NovoLog and Levemir FlexPens.  I also have a Dexcom 7 CGM that I started using a little over a year ago.  My last A1c was 6.3, so I feel I am in pretty good control (besides being overweight).  I admit I am not the best patient.  I tend to eat what I want and I don't exercise regularly.  I "guesstimate" the amount of NovoLog to take before each meal, and am not always good at it because I do have a decent amount of hypos.  I also frequently go "off schedule" on weekends.  The only complication I have experienced thus far is a frozen left shoulder (and lately my right shoulder is starting to bother me).

My Endo first spoke to me about insulin pumps back in 1999.  He gave me literature and a video, and said we would discuss it further after I had a chance to review the information.  Before my next appointment, I was diagnosed with breast cancer, so my Endo tabled the discussion and has never brought it up again.  I have been against the idea of going on pump therapy for several reasons.  One was the tubing.  I am kind of clutzy and know I would dislodge the pump regularly.  Another reason is the amount of calculations required (carb counting, etc.).

I understand that there is now a tubeless pump available.  Are any of you using it?  I would greatly appreciate it if you could share your insulin pump experiences with me.

Thanks,

Rose

  

2

I was diagnosed in 1977 and saw all the scary, early pumps.  They were supposed to be inspiring but all I remember was a giant metal needle that made me fear getting a pump until about 10 years ago when I developed hypo unawareness.  

The freedom with a pump is wonderful.  I'd never willingly go back to shots.  Because pumps use only short acting insulin it better mimics how a pancreas works.  After carb counting for about 20 years I guestimate too.  With a pump you can just program in the insulin you need to cover a meal (or you can use the pump wizard and enter exact carbs).  

Since getting the pump I rarely have hypos (maybe 2 or 3 a month) and my A1c is a 6.5 with my pretty lax attitude of diabetes management.  I also love having a record of the boluses I've taken and the total daily amount of insulin I've used.  

There's a must read book by John Walsh called "Pumping Insulin".  The tubeless pumps are called OmniPod and you can request a free sample (it doesn't give insulin) to try.  I thought it was too big and didn't like the adhesive, but some people love them.  There's another that's not for sale yet called the Medingo Solo.  I tried a sample about 2 years ago and loved how small it was and that it could give a simple bolus right from the pump, instead of having to use a remote.  But who knows how long it will be until it's available for purchase.  http://solo4you.com/

The 2 main pump options with a tube are Minimed or One Touch Ping.  I use skin prep pads (helps adhesive attach)  and the short tubing with a Minimed pump and it rarely gets in my way.  I've dropped it plenty of times and it just hangs until I grab it.  I breastfed my son for his first year and he'd occasionally yank on the tubing, but never pulled it out.  Contact the manufacturers to find out if they have demos in your area or ask your doctor's office for recommendations.  

I'd try a pump if you have insurance and/or can afford it on your own.  If you don't like it you can go back to shots anytime.  Take care.  -Jenna

3

Most endocrinologists have loner pumps available for short-term trials.  You can start by setting up the pump with saline, to get a sense of what life will be like with the pump attached to you all the time.  You may want to trial multiple models.  I'd suggest considering Medtronic, Animas, and Omnipod (bulky, but no tubing).

After you've trialed a pump of interest, with your CDEs oversight you can do a trial with insulin.  I've used various Medtronic pumps since 1992.  I think you will find that the pump will give you comparable of slightly better BG control, but with considerably less effort.  I've found the pump to be particularly helpful when I'm outside my normal daily routine.  The pump makes it easy to eat smaller amounts of carbohydrate more frequently, and bolus more cautiously, but more frequently.  The built-in bolus calculators are a great aid to more cautious management,  not just for automating bolus calculations, but  for checking the estimated active insulin already dosed.

It sounds as if you would like to get into an exercise routine for the health preservation and glucose stabiliization benefits.  It is a challenge to get into a regular exercise routine.  There's not just sore muscles and time scheduling, but there's the extra work of adjusting insulin dosing, carbohydrate ratios, and timing of insulin activation.  If I were just starting an exercise program, I would find a personal trainer with a good reputation for helping people "get started".  I would also plan carefully with my CDE, and have them available for more frequent advice.   I would make the investment in the trainer assistance for 3 months, doing 3 workouts per week.  With 3 consistent months, you can get through the toughest transitions, begin the feel and enjoy the benefits, and can maintain the new routine more independently.

4

Rose,

I've been T1 and hypothyroid since 1989. I did injections for 20 years, most recently Lantus and humalog. My lifestyle was so variable, but my endo was "waiting" for me to finish school, or something to help me get better control.

I haven't regretted the decision of getting my medtronic pump at all. My situation was similar to yours before getting it, only my A1c was more like 7.5 to 8.0.  Everything became so much easier since getting the pump. Having a CGM (continuous glucose monitor) helps significantly too as it tells me where my BG is going between meter readings. Yes, carb counting is something you can't get around, but there are resources out there to make it easier. Use product packaging and books like "Calorie King" and if you eat the same things consistently you'll get to know how many carbs you're eating. I hate carb counting too, but if it's the hardest part of my day I'm ok with that! It is my health and hopefully eating well will help me to live longer.

Absorption is much more consistent than injections too. And if you do exercise you can either decrease your basal rate (the amount you get constantly throughout the day) or detach the pump completely (not usually necessary, except for swimming) to avoid a hypo.

The most helpful thing is being able to prolong part of an insulin bolus with the dual bolus feature. This means when you eat fatty foods that take longer to digest you don't get a hypo immediately nor a hyper fluctuation later. The CGM can help you see where the highs and lows happen and as long as it's consistent, you just have to change some settings.

As for being clutzy with the tubing: I use a tummietote from TallyGear.com and tuck all the tubing into the waistband and it hasn't been a problem. Actually, I more often catch the infusion site on edges of wall and doors and rip them out that way. I got some sticky patches to help with that and it hasn't happened too much. Because of that being the bigger issue, I would be more worried about the size and bulkiness of the tubeless systems.

From the way things are going, I believe being on a pump is the logical step before the companies start making an artificial pancreas. It's like being one step closer to cured!

If you have insurance that covers the majority of the cost, I don't see any reason for a T1 to not have a pump.

Btw, I recently purchased a treadclimber exercise machine and I only need to do 20-25 min a day and I'm running normal BGs (with small snacks). I didn't think I'd use it so much, but it's pretty addictive!

It would be great to know what you decide to do. Good luck!

5

Thanks for sharing and for the great advice Jenna, Randy, and MaggieJo!  I really appreciate the support I get on this site, and wish I discovered it sooner.

6

Rose,

You have gotten great advice here. If you are looking for advice for the Omnipod Users, if you go to the Groups tab at the top of the page and search Omnipod there is a group for it, as well Insulin Pump Users.