23, Type 1, constantly fighting this inconvenience.

Hello everyone!

First off, I am glad to have finally looked into seeking help with my diabetes, this site seems great! My name is Kyle, I'm 23, 24 in August and I was diagnosed with Type 1 diabetes on May 8th, Mother's Day 2011. I know...sorry mom! I am 6'5" and weigh only 150lbs roughly and at the moment I run every other day (1 mile speed runs or 3 mile runs at a fast pace), I play basketball, travel to theme parks all over, and I'm a classic computer/video game nerd.

It's been over a year since I was diagnosed, and I am living with it ok. As it's been a year, and it may very well be the rest of my life, I need help. I just saw my endocrinologist and my A1C was 8.6 I believe. I know that's not good, and it's time for me to make a change.

I am extremely stubborn with diabetes, not in the fact that I don't realize my limits, but I feel like this disease just kicks my behind sometimes Thus, why I am here and have a few questions.

The main reason I am here, is to get some insight on the pumps that are out there and how other people go about things. Right now I am using Lantus and Humalog pens and a Contour meter. I am very, very skinny, and after doing the pens for a year I am ready for a pump. I am sick and tired of trying to find some skin to give myself a shot. It hurts and there has to be an easier way. I feel like the bubbles in the pens are impossible to get out and I hate always having to carry them around. On top of that I feel like they are very inexact. Insulin leaks out of the puncture and at times I just want to eat and be done with it. I eat what I want, all within good reason, and I need my insulin to be more exact so I can enjoy my life. Sometimes (and I know some moms are gonna be furious), but sometimes I skip my lantus if I am at a good level and sleep without it. I KNOW I should not do that, but the lantus hurts and is the thing I dislike the most about the disease.

I felt before I was "too active" for a pump, and now I realize that's just bull crap. So I am looking at the Omnipod and other pumps as an alternative.

Does the Omnipump feel like a shot? I understand kids have it, the pain isn't really a fear of mine, but because I am so damn skinny, I want to know if the Omnipod will better suit my body type. Does anyone have and love the Revel Minimed? Also, any runners out there who have type 1? What's your routine like when you know you are going to run that day?


Thanks in advance for any advice, answers, or welcomes

 

Welcome to the site.

If you don't like pens, why not try syringes?

Your A1C is high because you are not managing your diabetes very well. If you work on managing it better I am sure you can get your A1C down.

Here is some good info on pumps:

http://www.childrenwithdiabetes.com/pumps/

 

That is good you are ready to move to a new level.

My son is thin -- 6' 4" and 155 pounds.

He uses an Animas pump and puts the site in his upper hip. He has never put the site on his arm or his leg. He sometimes uses his stomach.

When exercises, he sometimes takes the pump off, as he doesn't need the insulin. Other times, he puts it in a pack that fits close to his body under the shirt. This was for basketball or tennis, not running.

He uses the inset site, which has a spring mechanism to insert the site. He didn't like doing shots manually (used the inject ease) and doesn't do sites manually.

He would never stop using the pump -- it is so much more convenient. You just have to remember to bolus and there isn't a lot of supplies to bring with you.

 

I'm glad you are making some changes, that is an admirable and difficult thing. You sound like you are on the right track and your overall fitness is going to be helpful too.

My son is diabetic, so I am answering for him. He is almost 18, diagnosed at 15. He is not thin so much as very muscular, really no body fat on him at all. He is on the Animas Ping pump and also uses Dexcom CGM, so he has two sites in most of the time. He has not had any issues with not finding a place to put it, and there are many many very young/very skinny children who use pumps. See if you can get together with a pump representative to trial a site, that's what my son did, he was able to put a site in with her supervision/help but not connected, to see what it felt like before he made the leap.

He runs, lifts weights, plays football, ultimate frisbee, does yoga, etc, etc. He wears a spibelt to hold his pump for sports, or disconnects. He doesn't personally change anything on run days, he just makes sure to take some gatoraide or other thing to treat a low if needed. You'll find your groove in this, everyone is so different. We see lows many hours later so if he's intensively trained in a day he needs a night time check, otherwise he just reacts as needed. For him the workouts are of great benefit as it brings down highs and helps keep him level, he hasn't had huge problems with lows after working out (but again, everyone is different).

Great part about pumping is that for out and about trips (not far ones) all you need to grab is a meter and some glucose tabs (he keeps his in his vehicle), that's it. And eating can be more spontaneous/frequent, you just dose and eat when you like, no worries about shots and loading up insulin. It's just so convenient.

If you do stay on shots, I'd look at syringes vs pens and I'd move lantus up a few hours so it's not at bedtime; you are correct in that skipping lantus is a pretty bad idea!

Good luck to you, I hope you'll stick around and learn more, there is a collective wisdom here is that is invaluable and you will learn lots of tricks if you ask, read, etc. Welcome!

 

In regards to someone mentioning the syringes, I'd rather stay away from bringing vials around with me everywhere. Like I said, I don't mind needles, but at this point it's just frustrating with how much time and effort it takes me to give myself shots. It might be easier without the pens, and switch to the syringes, but I'd rather try out a pump.

This sounds very encouraging as I am almost the same exact body type as your son I have the Animas booklet in my hand as I type this, but your reply leads me to the question, why not use the Revel instead? The revel seems like the same thing, but it's waterproof. Is it price? or was the Animas the first one your son was introduced to? The more I know the better.

Thank you, and it's good to know your son is extremely active, because that's exactly how I am. When I play basketball I am with others, but when I run I am alone. So managing my diabetes better makes me feel a lot safer when I am alone.

Contrary to my A1C, I feel like I have done a decent job of managing my diabetes, but I must admit the fault of sometimes skipping my lantus is just stupid. I feel like with a pump, I won't have an excuse and my life can become so much EASIER.

My question for you Nan is, what exactly is a Dexcom CGM? Also I direct this next question to everyone, is the term "bolus" referred to times when I give myself insulin before I eat? As strange as it may seem, either I was told this and forgot or I was never told the term "bolus".

Thanks everyone, and yes, I plan to stick around

 

My daughter hated Lantus (MDI for 13 months) and then moved to the Revel Pump. We like it a lot, but it doesn't make diabetes go away. There are so many perks to the pump: being able to temp basal higher or lower, the integrated CGM, seconds at meals, etc., but there are also the downsides. The site we inserted last night kinked, so by 3 a.m. she was at 289 with ketones. On MDI, we worried more about lows; now we worry about both. Buit, neither of us would want to go back to the way things were.

You'll also find that most non-D folks assume that once you switch to a pump, it does all the work. They think it does what an artificial pancreas is supposed to, already. And that's even people in the medical field.

 

Yes, bolus refers to one amount of fast acting insulin, usually given before a meal. Basal insulin refers to the amount of insulin given over a longer period of time. On a pump basal is fast acting insulin given in small amounts continuously, with injections basal is usually a long acting insulin, like Lantus, given in one (sometimes two) doses a day.

Just to be clear, and so you don't think my orginal comment was cold, I was just going by what you said in your original post, that you felt like your management could be better and that you do things like skip your Lantus, which is not good management. I am glad you are here looking to improve your life and your health. There are a TON of people here who I am sure can help you make some good decsions on a pump and also, if you do decide to pump, can help you navigate all the issues around dealing with a pump on a daily basis.

Good luck.

 

Oh no not at all! I know what you meant, I was more or less trying to convince myself I have done an ok job rather than thinking I was a complete failure at it haha. And yes I agree, I love forums like this because you get so many eyes on questions you need answered and you get to help others as well. It's great to find communities where you can be a part of something bigger than yourself.

I think I need to give these pump rep's a call, been reading each booklet and it just feels like I am getting no where. Hopefully I don't get someone who just wants to sell me something, but wants to get the pump that is right for me, something I am comfortable with. I think I am going to try and see what the Omnipod is all about. I like the idea of it for some reason. idk. Time will tell! I love that I can demo it, so maybe that is the next step right now.

 

To answer your question directed to Amy regarding Animas, we chose Animas because it has a meter remote (you can bolus directly from your meter, leaving your pump hidden) and is waterproof. The Revel actually is not marketed as waterproof, but in reality it is and will be replaced if it gets water damage. That's my understanding anyway. My son fully swims with his pump still in (Animas). We knew we wanted to go with Dexcom for cgm (more on that below), so animas seemed a more logical fit. All the pumps on the market are good solid pumps with individual pros/cons, you just have to decide what matters most to you, play with the pumps if at all possible, touch and button push and see what feels most instinctual to you.

Bolus means to give meal time insulin. Basal is currently your lantus, and via pump it will be novolog/humalog/apidra given continuously (or nearly so), and it's your background need for insulin. What's very cool about pumping is that you can modify your basal by time of day, so for example you may find that you need more basal at 2am and less at 10pm and you can program your pump to be that specific. It's pretty nifty. You can do the same with bolus needs, so for example my son needs 1:6 for breakfast and 1:7 the rest of the day.

CGM is continuous glucose monitor. It's the best thing since sliced bread, but it does mean a separate site on your body. It gives you (nearly) real time blood sugar readings in a graph type form, so you can visually see at any time where you are at and where you are heading, you get feedback on if you are rising or dropping, steady, etc. It's not accurate enough to be able to correct from, blood checks are still needed, but it gives you a more comprehensive picture of where you are and it's positively invaluable in figuring out night time needs. (diabetes never sleeps, but often we ignore it then...cgm helps figure out trends at night very nicely. It's very possible that you are rising at night unknown to you and that may be contributing to your A1C number). Blood sugar readings from a meter are a snapshot; CGM is a video...if that makes sense. 100 via meter may in reality be found via cgm to be 100 and dropping with 4 units on board!

Dexcom is a brand of CGM and is a stand alone/separate system. In some unknown universe they will be integrated with Animas pumps so you only have one receiver to carry around (always will have 2 sites though). Minimed's cgm is integrated with their pump such that the same receiver that you program to give insulin also receives the data from the cgm, so you have one less thing to carry around which is nice.

Hope I answered without confusing.

 

OR, they think you have the "bad kind" of diabetes, you know, the form where insulin has to dripped into the body 24 hours a day.

 

using one of those implanted pump machines.....

 

Everyone has given you really good advice. I think the next step for you would be meeting with representatives from the various pump companies and trialing your pumps. They all do what they're made to do - deliver insulin. It's really a matter of personal preference which one you choose. The best way to make that decision is to get your hands on them and push some buttons!

Best of luck to you!

 

OP, sounds like you have a great life going for you. The sooner you just accept diabetes and manage it versus letting it manage you the better off you will be. It's just fine to hate it but it's not fine to ignore it. Shots don't hurt nearly as much as the incremental damage high a1c's can do to you. You know that, so just deal with it.

The pump is just another insulin delivery mechanism, it won't change the way you feel about diabetes, or magically bring down your a1c. Only you can do that. The change you need to make is an internal one.

 

I understand what you are saying here...but for my daughter, the pump DRAMATICALLY changed the way she felt about diabetes. Suddenly, she could snack and bolus many times a day just like a normal person with a normal pancreas. The pump was more discreet and made her feel less self conscious. And best of all for me, she could custom the basal to deal with the dreaded insulin resistant mornings. That was a huge one in my opinion.

 

We never considered minimed. We had experience with the overly aggressive marketing of the local Mini med rep and I didn't like the predatory nature of the company at the time. Animas had great customer service. A CDE from Animas worked at the local day camp for type 1 diabetics and was the group leader for my son. He really liked her and liked the pump. At the time, he liked the database of foods, but has never used it as he guesses at the carb count all the time.

This was a 12 year old trying to decide between the Cosmo and Animas pump. At the time, I thought both would be fine.

 

Yeah, ditto. It is entirely possible that a pump could change the way that you feel about diabetes. It was lifechanging for us.

 

I agree with everyone saying the pumps can do for me. Thanks for all the support, kind words, and answers.

I'm not a child, I can handle myself, but I am just really trying to live a long life and sometimes it can be a bit much. work, exercise, social life, wanting to eat everything in sight! haha. Being skinny sucks with the pens, I can't wait to sit down with a rep for the pumps and get some solid hands on with them.

So far I got a lot of info from you all about the pumps, but what about the Omnipod? I know that's a pump too, and I like the idea of no tube, anyone have it here? Any foreseeable problems being super skinny with an omnipod? Anyone skinny with one?

Thanks guys!

 

My son has a Revel. We love it. We've never used a different one, but I really like it. It does what we want and need it to do. There's a few things we'd like to do differently, but I think that would hold true with any pump (or technology for that matter). We have the sensors that we've just started using as well. So far, we've had no trouble with MM. His pump gave an error one time, and Medtronic overnighted one to us.

 

I have two kids on the Animas Ping ( they both were on Cozmo previous to the Ping) - they are both skinny and VERY active (ski, water ski, competitive figure skating, climbing, cycling etc etc)
- my son(22 yr) uses angled insertion sets while my daughter (16 yr)uses the inset 90 degree insertion set. One thing to remember is to look at whether or not you can use a variety of insertion set brands with the pump you choose . (I know that there used to be an issue with mini med pumps only being able to use mini med insertion sets though I don't know if that is still the case).
Find out if any of the pump reps are diabetic themselves - we were lucky here that two of the three companies had reps that were diabetic( one was also a high level athlete)- while the third one was a CDE .I found their experiences really helped when we asked questions etc.
I would also recommend that you find out if there is someone at your endo clinic who works with "active diabetics" , for lack of a better term. We have found that often patients get advised with the "one size fits all"regimen and by working with someone who works with athletes, we have gotten better results. My son has also made a point of really paying attention to what he eats and how each food affects his bg and has fine tuned his carb counting - he brought his AiC down a full percent in 3 months.
DOn't get stressed too much about your A1C- use it as a piece of information to help steer you in the right direction. You are still fairly new at this game and you are still learning about Diabetes. You will have to find that balance where you have good control with out a lot of lows ( remember a low A1C does not always mean you have great control)- this can be difficult when you are so active as you have to balance so many things. You will find that it may take some time to get it down to the low 7's and that is ok - what is more important is you trend that way and then hopefully stay in that range over the long term.
Good luck - I know that my kids love the pump and it has made a huge difference in their lives . It is not a cure all and sometimes it is a royal pain in the neck to work with but they both feel that it is allows them to have better control over their lives.

 

I don't think I saw this mentioned yet, but there is another basal insulin called Levemir you could use in the meantime until you decide on a pump and get all your paperwork taken care of. Lantus burns because of the ph. For some people, like you and my daughter, it burns terribly. She's 8, recently diagnosed, but the only thing that has made her cry about diabetes so far was Lantus. Levemir has a ph that more closely matches that of your body, like Novalog and Humalog, and therefore doesn't burn/sting.

Some people find they need a bit more Levemir than Lantus, or that they need to split their dose into two shots spaced 12 hours apart (from my research this is most likely with children taking small doses). There are some great folks here who can help you tweak it if need be and your Dr isn't helpful.

We also found the pens highly inaccurate (user error, most likely) and they hurt her far more than syringes. Everyone is different

She wanted to pump and chose Omnipod. It's been a little over a week since she started and so far, so good. She loves it!

Good luck OP. Being here and asking questions is a great first step to regaining control of the life you want for yourself.