Wednesday, October 9, 2013

The Problem with Pod - final chapter - Of Pumps and Pods

In 1992 I started teaching myself how to play guitar.

When I was a kid, I had wanted to play drums, but my parents got me guitar lessons instead. (my little sister got to play drums).  I hated guitar, probably because it wasn't my idea to play and so I never learned how to play.

I must have been about 1996 that I started my first band with my ex wife.  We played Christian Music in Churches, playing other people's music and eventually decided to do something different with an outreach bent. LivingDead the Christian Goth band was born.  We did mostly original stuff with some secular covers, such as White Rabbit (Jefferson Airplane) and In the Name of Love (U2).  It was quite a show and we got to dress up. (I am planning to post some exclusive video to YouTube in the near, but be forewarned that it is very bad :))  In spite of that, we recorded a couple of CDs and actually managed to get some Radio airplay on specialty shows around the country.

Managing my T1D was sometimes difficult when we were performing as I was still on Lente and having to fuel to my peaks. In addition, we always tried to be active on stage, but fortunately I was able to deal with any lows on stage while avoiding catastrophe!

 At this time we were playing live somewhere in the neighborhood of 50 times a year.  Naturally we were getting better all the time and ended up in this Midwest Band tournament in Minneapolis, MN.  We booked some University of Wisconsin gigs, Christian Coffee houses and a few Churches along the way as we went back and forth from Indy to the Frozen wastelands of Minnisota that winter.

In December of 1998, after yet another trip to the twin cities, we broke up that band and started another going in a different direction (Alternative Rock) and with a new band name, Blaq Lily.

Jenny (now called Arminta - her middle name) and I started out playing open mics as a duet and immediately garnered some attention!

listen to Blaq Lily songs here

or on ITunes

We met another musician at this time Jennifer Carlson, (a talented harpist and amazing soprano vocalist) at a park gig in Broad Ripple, IN.  She asked about jamming with us and soon was a part of our ensemble! (you can find Jen currently performing with Alair)

Jenny and I had released the above self titled album in 1999 and attracted the attention of a producer in Nashville, TN (Will Smith Tyler Music Group) who invited us to Nashville to do some test recordings at the Sound Emporium (studio that Trisha Yearwood, REM, etc.. had recorded a number of hit songs)  In addition to the 3 of us, he brought in some backing musicians that had credentials with Garth Brooks, Lyle Lovett and the Grand Ole Opry! The songs that we cut in Nashville helped us to attract high quality musicians and before long we were playing for pay about 150 times a year.

Jumping ahead a few drummers and bass players. In 2001 we did a call for drummers and in the process auditioned a T1D drummer., Greg Mrakich.
we discriminated against him in that audition because the consensus of the band was that we did not need another diabetic in the band and hired another guy instead.

But Greg kept coming to shows and stayed in touch with us.  So when the guy we had hired instead (along with most of the rest of the band) quit after our 2002 CD release, we hired Greg.  This turned out to be another turning point for me because up until this time, I could count less than 10 T1Ds that I had met in my entire life.  Greg was on a pump and was sort of a pump evangelist.  He eventually sold me on the idea of giving up the needle and I got my first pump, a Cosmo (now out of business)

I switched to a Medtronic, great pump with a lot of great features and it had CGM capability (not
such a slick set up)  The needles for the Continuous Glucose Monitor sensor are/were huge ( picture borrowed from diabetesdaily ) and seemed to take about 24 hours to calibrate properly, for 3 total days between changes. Plus if you had to be away from the pump for any length of time, like for a swim workout, it totally messed up the reliability of the calibration.   That said, it was a helpful thing when it was working properly and I am now looking at the Dexcom CGM as a result.  I have a number of friends using it, have been to an educational session and by all accounts, it looks like this is the CGM to have right now.  I will write about it when I get it. 
After using the Dexcom for a number of years, I started noticing this new comer in the pump market.  They had a tubeless pump.  I was intriqued by this design for a number of reasons.
  1. I was constantly catching my tubing on door knobs and ripping out my infusion sets, forgetting that I was attached when I would wake up in the morning and slamming my pump to the floor when I would reach the end of my tether.
  2. this POD pump attaches directly to the infusion site in a unit about half the size of an Iphone and you don't have to take it off for showers.  Nice since I would occasionally forget to plug my little R2D2 unit back in and get a high BG as a result
  3. I can swim with it on
  4. I don't have to give up valuable pocket space in my cycling jersey
  5. It doesn't bounce around on my waist when I run
  6. I can conveniently rotate infusion sites because I don't have to route a tube to my leg, butt, lower back or tricep
  7. Dressing up is easy, because - I don't have to route a tube to keep access to my pump as I have a PDM (Personal Diabetes Machine) that controls my pump wirelessly and doubles as a Glucometer.
  8. pretty easy to travel with, don't have to take as many supplies
  9. It is inconspicuous enough that I frequently forget that I have it on (the purpose of the sample PODs that they hand out at T1D events
The down side includes the following
  1. I frequently forget that I have it on and rip it off when changing cloths.
  2. It is often difficult to gauge how much insulin to load it with resulting in wasted POD time or Insulin waste
  3. I sometimes run it into door frames and rip it off.  (when I rip this thing off, I am not ripping it loose from my skin, but am ripping the sticky thing in half that the POD is attached to) that said it does stick out a little way.
  4. The PDM is enormous in my book and difficult to mange as it takes up room in my Jersey pocket, suit pockets
  5. If I am due to run out of insulin during the day, I can not pre load a POD, like I could a cartridge with my Medtronic.  But have to carry an entire vial of insulin with me. Totally inconvenient for a long bike ride on a hot day.
  6. I used to have a second infusion site ready to go in case I had a site failure, now I have to carry a syringe to pull insulin if the POD fails
  7. The carry case that Insulet provides for the PDM sucks and is little more than a rubber sleeve. I don't know if those guys are aware of this, but a Glucose monitor in order to be effective has to have a finger pricker to get some blood and test strips to ...... test with, and you have to carry all of this stuff with you everywhere you go.
    1. Even though the good people at Insulet seem ignorant of this little fact, they did spend a considerable amount of energy in updating the software/features in my new PDM so that it will not let me
      1. use my PDM test my blood with out identifying that I am indeed who it says I am. Really nice if I am trying to test and my BG is low to begin with - to much trouble to ad a feature allowing those of us who are not surrounded in our home with other T1Ds to turn this feature off. 
      2. adding in a bunch more queries when I am changing my POD out so that I can not speed through the process that I have to repeat every 3 days - would be nice to be able to turn this off after the first couple of months, it just annoys me especially when my POD fails prematurely and I have to do this in the middle of the night and just want to get back to sleep  ain't nobody got time for that
  8. Insulet also put a considerable amount of effort into reducing the size of the actual POD by 25% - this is actually quite nice and I am not finding my self running my POD into door frames or catching it when I change cloths near like the old one... however this new POD has given me a bit of an annoying problem
    1. it has failed on me an unusual amount of times in my first batch. Out of 30 I have had 8 failures (coded with no explanation except for one occlusion which Insulet says they do not cover??? This happens sometimes during normal operation and I never ever had this particular problem with Medtronic.
    2. Wait time to talk to someone at Insulet have been exceedingly long.  I have been offered the opportunity to leave messages on 2 occasions which I did and did not receive a call back, so 3 days later called them again for the hour long wait
    3. this problem has wasted a considerable amount of my insulin, not to mention lost sleep and the inconvenience when it happened on a bike ride with 60 miles left to go. If I jump through enough hoops they apparently will condescend to compensate me for my wasted Insulin.  But it seems like a ridiculous amount of effort they want me to put in with an undeterminable outcome. 
    4. Every time I call the company, it feels like old times at the doctors office.  I am or must be doing something to cause these failures.  They always talk to me like I am a first time caller and instruct me in the same things over and over that I have already verified that I am doing.  Yes, I do pinch up when I change PODs for the insertion process..... don't you guys keep some sort of records??? should I really have to tell  you that I am calling in right now about once per week. 
  9. Bottom line, I have loved my POD but am not currently loving the company. Their customer service is very poor.  Don't get me wrong, they eventually make it right, but all of the hoops and attitude that I have to jump through to get it done really leave a foul flavor in my mouth about the company.  So don't be surprised if I post a review of the Tandem before the end of the year.  All the things that I don't like about tubing might be ok compared to this.
Stepping off soap box and calming down :)  Now you all know the problem with POD.

Tune in Next time when I talk about my recent Cure!!!

Peace Love and Happiness

1 comment:

  1. Glad that Insulet is, in the end, resolving the issues. That's something. I've never had an interest in the Pod, even now as I'm pump-shopping after leaving Medtronic after about a dozen years with them. But what makes me now NEVER want to go to the OmniPod is that after years of promising Dexcom integration, they've now broken up and won't be. Have no interest in a pump that doesn't integrate, or has no plans to integrate. Loving the G4, and can't wait to find a pump that will ultimately integrate with it!