Thursday, November 6, 2014

Dexcom Disappointment

Nate began Dexcoming in 2010 at the age of 2 years old - It wasn't FDA approved for children yet but I was instantly in love.  

You can read about Nate's Dexcom trial here or you can click the Dexcom tab at the top for more information.  It was nice that Nate was so young when we began our Dexcom journey because he couldn't tell me NO at the time.  It quickly became just another poke in his world every 7 days.  We were very fortunate that at the time our insurance covered (we were on COBRA at the time) the Dexcom 7 and the sensors.  Unfortunately, once we lost COBRA we were on our own for the cost of the sensors which were about $350 per month.  

We have always been blessed by the DOC (Diabetes Online Community) -- we have been gifted sensors and traded other diabetes supplies for the sensors also.  Shhh . . . don't tell anyone but D Moms are the BEST and we all help each other out with supplies!!  We have never gone without sensors!! 

In 2012 Dexcom released the latest and greatest Dexcom product, the G4 and I could not wait to get my hands on that awesome little thing.  

Unfortunately, Nate is on Medicaid and although we are very fortunate to have it, sadly it does not cover a CGM for Nate.  They think it is not a medical necessity -- I disagree completely but that's another post for another time!  I won't lie -- I was a little jealous seeing all of my friends in the DOC posting pictures of their kiddos with the new technology!  Suddenly, the old Dexcom 7 that I had been on love with for the last few years seemed like an antique and quickly lost its luster.  (Now, how I miss its durability and super strong charging port!)

Fast forward to summer of 2013 --- Nate's dad called and told me he had a friend that wanted to GIVE us a G4.  Say what??  I think I cried.  --- I probably cried . . . I always cry.  

We received the new system in August of 2013 just in time for Nate to start kindergarten.  I was overcome with appreciation and happiness!  The gentleman that gave it to us probably has NO idea just how much it meant to me.  It was such a relief to be able to keep Nate safe while attending school!  

Then fast forward again to December of 2013 and suddenly I was in moderate panic mode!  Our receiver stopped working!  The little port that you plug the charger into had broken loose and was lodged inside the receiver.  We had no idea what had happened!  I called his teacher and no one had dropped it --- nothing --- it just broke!  It was crazy!  I was not in full blown panic mode because I figured I would just call Dexcom and they would replace it with the warranty.  WOW!  WRONG! Because we did not purchase the Dexcom system they would not honor the warranty.  Full BLOWN panic mode! 

Nate's dad called his friend that purchased it and after a lot of back and forth between all of them Dexcom decided to replace it.  In the meantime an amazing D mom had sent me their old receiver since theirs had just been replaced by insurance.  WOW!  

Fast forward again and the same thing happens.  For no reason the port just breaks.  Seriously?  Another amazing D Moms sends us their spare receiver.  I have the most amazing friends --- I am very much aware of this!  

Repeat that song and dance 2 more times.  We have had 4 receivers break for NO REASON.  I know this sounds highly suspect but it is so true.  Nate rarely wears the actual receiver otherwise I would maybe understand it breaking because he IS a rough and tumble little boy!!  But at school his teachers wear it on a lanyard around their necks which is where I wear it also when he is with me and when at home the G4 picks him up all over the house so we just leave it on the kitchen counter.   SO WTH DEXCOM??  

Here are a few posts I found in a FB group from others experiencing the same problem:

* Grrr the phone keeps saying cgm connection error. Fearing a broken charge port I plugged Dex into the computer and it showed the charging icon, so thankfully not that. Wish my 14 year old was home!

* Dead Dexcom, 2 days after warranty expired. Messed up the port. There's a lot of traffic on this site - so can someone link me to the links for where to get the case info and which cable to buy? Going to try again. We're going to try and get a second receiver, but not sure how much they cost. Has anyone had luck with this? We want my daughter to still have a Dexie in her pouch that she can check when she wants. The Nightscout rig would be in her bag.

* I'm curious has anyone has had the fragile charging port on the Dex break? Our was pushed inwards from an upside down cable. Already received a replacement but was wondering if it's something I could fix so that we'll have two Dex's? And if so how do I fix it?

* I contacted the FDA to see where to send complaints on Broken USBports. FYI
Thank you for contacting the Division of Industry and Consumer Education (DICE) at FDA's Center for Devices and Radiological Health (CDRH) e-mail account.
Please send your complaints to
VJ Huang
Division of Industry and Consumer Education (formerly DSMICA)
Office of Communication and Education
Center for Devices and Radiological Health
U.S. Food and Drug Administration

* Think we may have the dreaded broken Dex port. Can't get it to connect. Won't show it is charging, even if I plug it into the Dex charger. Hoping someone is going to tell me I just need to restart something or do something simple to make it work again. 

This post was mine in a FB group (Dexcom related):

I did a search for "Broken Port" in this group and A LOT of posts came up. I would like to get a rough number just from this group of how many people have had a broken receiver port?!?!
We have had 2 --- both non rig related. We lost one in December for no apparent reason (just normal charging) and last night when I pulled one gently off the charger I realized that it was loose and now will no longer charge. We were 3 days outside of the warranty in December but they ended up replacing it for free but now we are WAY outside of warranty.
I love the product but am disappointed with how poorly the G4 is made.
So, could you post a quick comment if your Dexcom port has broken at any point Nightscout related or not. Thanks!

And here are a few of the responses:

Ours broke under warranty, not Nightscout related

Ours broke also only like 3 months after we got it! They replaced it but only after asking me a trillion questions to make sure it wasn't my fault first!

Broke under warranty. Using NS; however, it was just a simple charge one minute, gone the next. I can't blame it on anything other than poor port construction.

Yes. 20 days outside of warranty. Not Nightscout related.

Lost one last fall to normal wear and tear. (Also lost the circular button on one to normal wear.) The port on my rig receiver is looking wobbly, but it's a 2 year old receiver. The 3D printed case is helping.

 Is there a way to complain to FDA or somewhere see if they would extend the warranty. It is a medical device and it should hold up beyond a year. I have cell phones that have never broken for 2 yrs or more.

 Broke under warranty- we do not use the nightscout yet-

Yep. Broke under warranty. Non rig related

We've had 3 break. Only one was while using nightscout and only 2 were under warranty. I agree, wish it was better made for the price and the fact that it is used all day everyday!

Broken! Port collapsed while I was inserting a cable for NightScout. Seems to me the port shouldn't collapse inward.

Had one port break under warranty about 9 months ago - so totally pre-rig days.

1 broken port, before night scout

1 broken port here.

1 broken port - Nightscout related

1 broken port, not the Dexcom used with the nightscout rig.

I've had a port break and fall into the body of the receiver. Couldn't charge it and called Dexcom CS they replaced it without issue.

So, I guess it is nice to know we are not alone BUT REALLY, DEXCOM?  This is NOT an inexpensive piece of medical equipment.  In fact, it is really a VERY expensive piece of medical equipment that people rely on daily.  

In one FB group a few people tried to repair the receiver so of course, Ian gave it a shot on 2 of them but had no luck!!  

There were pictures along with the post but I do not want to violate that person's privacy -- here are the directions:

"If ever you've broken a USB port in a Dexcom Receiver - and if you haven't yet, you will - here is how to take one apart with a dremel and a makeshift router table. A new 50 cent USB micro female connector, some careful soldering, and you're on your way again." 

Here are some of the pics of G4 that he posted and some pictures of Ian trying the repair:

I would like to point out that none of the broken ports were Nightscout related and after we lost the last receiver and were down to 1 receiver I stopped using Nightscout for fear that we would break our last one.  That was a good thought but unfortunately it broke anyway.  #LAME  

The last one broke last Friday night and again I was in full panic mode.  Those that don't live with T1 cannot possibly understand how important Nate's CGM is to me.  I couldn't sleep - I was so upset so I decided to start searching for affordable alternatives (because sadly buying one new is NOT in my budget).  I found one for sale online for $200 (in Hong Kong - #weird) so I texted Nate's dad and asked if he would split the cost with me.  He didn't respond right away but when I woke up for the 3AM check I noticed he had texted me back during the night and reminded me that he still had the one that Dexcom had replaced last December!  OMG!   Happy tears again!!!  I totally forgot he had that one!! So now we have a brand new one but it has no warranty.

So, for real we are now on our last receiver and I am going to continue the uphill battle of fighting Medicaid for them to cover the Dexcom G4 and the sensors!  In the mean time I am terrified of charging this receiver for fear the port will break.  And honestly, as a mom with a son with T1 and a daughter with Crohn's disease it's not like I need one more damn thing to worry about!!  

I sent the last broken receiver back to Dexcom yesterday with a letter.  I am confident that they won't replace it but I am asking them to at least look at the issue and if nothing else use it to help improve the product!  


Anonymous said...

Talk about living life on the edge of your seat! Geesh!

Kimberly said...

Tears....LOTS of tears...And more TEARS...and I got a new receiver for free. I kept the manager on the phone for an hour sobbing that he didn't care if my daughter lived or died and they were just trying to get money out of me. Just FYI...TEARS.

Anonymous said...

That stinks that they can't be replaced. As you're well's not you! They break alllllll of the time.

Anonymous said...

That stinks that they can't be replaced. As you're well's not you! They break alllllll of the time.

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Just a Mom

I am NOT a doctor, nor do I play one on this blog.

I AM a wife.
I AM the mom of 3 wonderful children.
I AM my son's pancreas.

The information provided on this blog is from our personal experiences with Type 1 diabetes. Because something works for us does not mean it will work for you.

Please consult your doctor if you have any questions or concerns about your health care options.

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