[Diabetes-talk] inpatiently waiting

Thu Dec 8 18:23:40 UTC 2016

I've never trained with a pump rep, but at my diabetes clinic, the nurse
educators are specially trained in pumps. The Nebraska Med Center's diabetes
clinic is one of the top ones in the region. The nurse educators are well
trained in pumps, and because of me and a couple of other blind people (all
totally blind, BTW) they have a better understanding than some on using a
pump as a blind person. So I've been lucky.

Bridgit

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Eileen Scrivani via Diabetes-Talk
Sent: Thursday, December 08, 2016 7:58 AM
To: Diabetes Talk for the Blind <diabetes-talk at nfbnet.org>
Cc: Eileen Scrivani <etscrivani at verizon.net>
Subject: Re: [Diabetes-talk] inpatiently waiting

I also trained with a CDE provided by Medtronics and she was fantastic!  I
started training within a week of having received my pump, but I had to call
and let them know I had the pump in my possession.  And yes, I fill the
reservoirs from an insulin vial and can do this by myself. 

Eileen

From: Veronica Elsea via Diabetes-Talk
Sent: Wednesday, December 7, 2016 10:54 PM
To: 'Diabetes Talk for the Blind' 
Cc: Veronica Elsea
Subject: Re: [Diabetes-talk] inpatiently waiting

I think I remember Tom talking about a Medtronic pump where you can read a
few status reports on an app, like battery status and such. But you can't
actually control the pump at all with an app. As for training, I have always
met with, and trained with a person from the pump company and will insist on
doing so the next time around as our local educator is, well, ummm, I'll be
nice here. <grin> As for my pump story, my poor Cozmo died this afternoon.
It will no longer deliver a bolus without giving me a system fault alarm.
Oops! But I may be saved in the short term while I explore as I found a
backup pump on E-bay.
I'm wearing it right now. So far so good, an hour and a half. <grin> But
Joyce, I will be quite interested to hear how it goes with your Medtronic. I
always fill my own cartridges and have had no trouble or air bubbles in 25
years. I'm loving being able to handle my correction bolusses, make
decisions about whether or not to agree with insulin on board, change my own
basal patterns, set temporary basal patterns for up to 72 hours, set the
time and date myself and enter in the amount of carbs I'm about to eat and
have insulin delivered automatically. For the things I occasionally ask
someone else, like how much is left in my cartridge or oh Lordy I can't
remember if I took my last bolus, those answers are right there on a home
screen in plain English so anyone can read them to me. I know the Accuchek
pumps rely heavily on icons. 
And just between us, while I wouldn't really wish vision loss on someone
else, ummm, family member of a member of the congressional health
committees? Okay, not really, but one of those concept thoughts? You bet!
<grin>
In the meantime, I just wish we could get companies to put keypad beeps
option back. The beep sound is already there. It would be a five-minute
programming job. It wouldn't be anything close to a complete solution but it
sure would help.
So while we're wishing and trying, all we can do is compare notes and figure
out what we can. 
Back to training, I did not receive any training when I got my Dexcom
either. And if a box shows up at my house, it will be opened within minutes
no matter what. I've been pretty fortunate in getting someone to read me the
manuals right away. I find the online versions aren't very useful to us
because they're full of diagrams. And Joyce, you have every right to ask for
a trainer with more experience. The Dexcom support told me they'd used
certain procedures with blind people but when I asked a question about doing
something from a totally blind person's point of view, it suddenly got
really quiet on the phone. The most important quality in any trainer is
really curiosity and creativity. And that reminds me, Medtronic has many
different types of cannulas and someone should show them to you so you can
make your own decision about which kind you want. The Sure T's did not work
well for me at all when I tried them, 25 years ago and some cannulas go in
at an angle, some go straight in. You should be able to make that choice for
yourself. So sorry to hear things were handled so sloppily for you. I sure
understand the impatience. Please keep us posted as to your progress and
hang in there.
Veronica

"Guide Dogs, First Hand", Veronica Elsea's classic album is now available on
iTunes, along with other music from her and from the Guide Dog Glee Club. 
To learn more, visit:
http://www.laurelcreekmusic.com
                Veronica Elsea, Owner
Laurel Creek Music Designs
Santa Cruz, California
Phone: 831-429-6407

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Bridgit Kuenning-Pollpeter via Diabetes-Talk
Sent: Wednesday, December 07, 2016 6:16 PM
To: 'Diabetes Talk for the Blind'
Cc: Bridgit Kuenning-Pollpeter
Subject: Re: [Diabetes-talk] inpatiently waiting

Joyce,

Where is your endo and med team? I've always trained wit nurse educators,
never pump reps. Your endo should have had all this set in motion, including
a script for vials of insulin. Your endo also needs to determine what to set
your basal rates too. An appointment should have been scheduled to coincide
with the arrival of your pump.

Yes, you will need vials of insulin to fill cartridges. I fill my own
cartridges when I have too, but I prefer to have assistance for filling
them. I will have several filled at a time. For me, a cartridge last about a
week, but this will depend on what basal rates are set and how much and how
often you bolus.

I initially wore a CGM for a week before getting my pump so the doctor had
an idea what to set basal rates to. This was 12 years ago now. Periodically
I have to adjust my basal rates, but that is based on glucose records.

As far as I know, no app is accessible for blind users for pumps.

Bridgit

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
blindhands--- via Diabetes-Talk
Sent: Wednesday, December 07, 2016 7:20 PM
To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
Cc: blindhands at aol.com
Subject: Re: [Diabetes-talk] inpatiently waiting

All that I have had so far was the salesman come out and let me touch it.
Showed me how to bolus  and fill the insulin into the vial that goes into
the pump.  That was it.  I sent questions which haven't been answered yet.
I learned from a comment here that you have to draw insulin from a bottle.
I asked about this and told them I have only drawn insulin into a syringe
using a Count a dose.  I do not have insulin in a bottle so it sounds like
this is not going to be in use for a while.

I spoke to Medtronics today as my trainer wanted me to exchange what I have
for the Sure T whatevers and I will be getting them Monday.[my fault I
forgot to call on Monday], but Gee Whiz I am getting a bit upset as I was
informed that I had 30 days to return or change the pump that was ordered.
I received it the Thursday before Thanksgiving and had the first face to
face training[more or less me really having a chance to ask questions to the
trainer.  So according to Medtronics I have 1 week to decide if this is the
pump I want or not.

I did send a message to the trainer and she told me that the trainer and
salesman team decides and don't worry about what Medtronics tells me.

I have my next appointment with the trainer Friday and she wants my son to
come with me to talk to him and include him in with the training a little
bit.  He doesn't live with me, but he works in town [10  minutes  away from
my house]  So any problems I would probably call him.

I really do think this was handled wrong from the start and the trainer
never worked before with a visually impaired person.  She did call up and
talk to the other trainers that has done training with visually impaired
folks, but none of them have worked with a totally blind person.

Does anyone out there using the 530G Medtronic pump with an IIPhone?  That
will be the test Friday.

I think I am going to see if the trainer will work with me more then once a
week.  

Joyce

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
Bridgit Kuenning-Pollpeter via Diabetes-Talk
Sent: Wednesday, December 7, 2016 12:11 PM
To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
Cc: Bridgit Kuenning-Pollpeter <bkpollpeter at gmail.com>
Subject: Re: [Diabetes-talk] inpatiently waiting

With both my pumps, once I received the box, I was able to immediately start
using them as I had the training already. It's unusual to me that this has
not been the protocol for you. You should have been trained, hands-on, long
before the pump was ordered, and now, you should be able to have assistance
to set it up and start using immediately. I've never heard of anyone,
sighted or blind, getting a pump and not receiving the training until well
after the device had been ordered. I think you need to make a stink with
your endo and medical team.

Is all this technology accessible? As far as I know, no iPhone app is
accessible with pumps, nor am I aware of a pump that runs on an app. CGMs,
yes, but not pumps. And the only CGM I'm aware of that's accessible when
used with an app is the Dexcum. All this technology sounds great, but will
it be accessible, or accessible enough, for a blind user?

Before ordering a pump, did you play with it to make sure it would work for
you in terms of accessibility? As kind and nice as doctors and trainers can
be, they do not understand accessibility and what will work and not work for
a blind individual. I just hate for you to get this pump out of the box only
to find it's not going to be accessible enough for you.

I recall a big feature for you was the feature for the pump to turn itself
off when BGs dropped below a certain level. Did you ever get hands-on to
learn if it will be accessible to turn back on? Have you had time to play
around with the pump to know for sure what you can do independently and what
you will need assistance for?

I wish you good luck with everything. I hope you can be approved for a CGM.
Not sure why Medicare refuses to cover CGMs for anyone. Boggles my mind.

Bridgit

-----Original Message-----
From: Diabetes-Talk [mailto:diabetes-talk-bounces at nfbnet.org] On Behalf Of
blindhands--- via Diabetes-Talk
Sent: Tuesday, December 06, 2016 10:44 PM
To: 'Diabetes Talk for the Blind' <diabetes-talk at nfbnet.org>
Cc: blindhands at aol.com
Subject: [Diabetes-talk] inpatiently waiting

I just wanted to let those of you know that I have the new insulin pump
still sitting in the box, but I have met my trainer from Medtronics last
week at my doctor's office.  I have another appointment this Friday and I
will be planning on testing out how the 530 pump works with an IPhone.  I
wanted and received the 630 pump and I am really disappointed that they did
not follow through with the IPhone and the 630 pump.  In conversation with
the trainer she didn't say yes and she didn't say no, but she does think the
fact that the 670 pump received FDA approval faster then they thought and
with that one coming out in Spring I kinda think that they flipped over to
be more ready for the 670 pump "artificial pancreas" to be out in the
Spring.

Now what I am waiting inpatiently for is getting a date for Medicare, Judge
and lawyers for Medicare to cover the cost of the CGM for me.  We are hoping
to get a date before the end of this year for my last and final appeal to
Medicare to cover me the CGM  expenses or deny them.  

I believe they are still looking for folks to be part of this.  They
contacted and is waiting for my indocrinologist to send in her letter
regarding my need for this device.  My doctor agrees without the CGM the
pump will be able to work to it's fullest and turn off when my blood sugars
dive down.

This all takes place via a phone call and I have requested a chance to speak
at this hearing so the judge will hear my side of this, too.  If they feel
it necessary they can arrange for even my doctor to call in and I was told
that the judge has worked around scheduling so the doctor can participate.

Wish me luck.

JoyceKane

_______________________________________________
Diabetes-Talk mailing list
Diabetes-Talk at nfbnet.org
http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
To unsubscribe, change your list options or get your account info for
Diabetes-Talk:
http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/bkpollpeter%40gma
il.com

_______________________________________________
Diabetes-Talk mailing list
Diabetes-Talk at nfbnet.org
http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
To unsubscribe, change your list options or get your account info for
Diabetes-Talk:
http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/blindhands%40aol.
com

_______________________________________________
Diabetes-Talk mailing list
Diabetes-Talk at nfbnet.org
http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
To unsubscribe, change your list options or get your account info for
Diabetes-Talk:
http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/bkpollpeter%40gma
il.com

_______________________________________________
Diabetes-Talk mailing list
Diabetes-Talk at nfbnet.org
http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
To unsubscribe, change your list options or get your account info for
Diabetes-Talk:
http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/veronica%40laurel
creekmusic.com

_______________________________________________
Diabetes-Talk mailing list
Diabetes-Talk at nfbnet.org
http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
To unsubscribe, change your list options or get your account info for
Diabetes-Talk:
http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/etscrivani%40veri
zon.net
_______________________________________________
Diabetes-Talk mailing list
Diabetes-Talk at nfbnet.org
http://nfbnet.org/mailman/listinfo/diabetes-talk_nfbnet.org
To unsubscribe, change your list options or get your account info for
Diabetes-Talk:
http://nfbnet.org/mailman/options/diabetes-talk_nfbnet.org/bkpollpeter%40gma
il.com