Newly Diagnosed - Going to Pump Therapy

[TonyAlmeida]

I'm 36 and was diagnosed late this past August.  My endo is switching me from 1 Lantus and 3 pre-meal Humalog shots to a pump therapy.  I asked because the 4x a day shot routine and meals were depressing me to the point where I could do nothing but cry.  Especially when I'd get a "bad" injection that stung. I'd try to tell myself not to be such a wuss .... but lets face it, it hurt.

What has been the experience of most people their first week or so on the pump?  I was hoping to maybe get a feel for what I should expect.  When they install it for me (in a week), I know they are going to reduce my Lantus dose the night before and I'll be in the hospital for a day for observation and training.

I just want some hope that I'll become a little more free with a pump and recover most of my life that Diabetes 1 stole from me.

[JDRF-Team-sgg]

Although I am the JDRF volunteer assigned to answer questions on Wednesdays, I cannot give you a first-hand answer about what life on the pump is going to be like. I am going to send out some e-mails to call folks who are currently using a pump to respond here, so please keep checking back in to see what they say.

I do know, however, that the pump will give you a little more flexibility in meal times. However, the pump does not have any mechanical brain, so you will still have to be the brainpower behind the basal rate and bolus doses. You will still need to do frequent blood tests in order to stay healthy. I can understand your depression, but it gets easier with time. I have lived as a diabetic for 34 years and the diabetic diet and lifestyle is just natural now for me. It will become easier for you, too, as you adjust. You learn where sensitive spots are and where to avoid injecting. You learn how to do the finger pricks on the sides of the fingers where they are not so sensitive, and pain rarely is an issue after you have found out where to go and where not to.

If depression really is an issue for you right now, I would encourage you to go to the JDRF web site (www.jdrf.org) and click on the link to Newly Diagnosed -- you can be matched up with a person who can send you personal e-mails to give you information about specific facts and can encourage you. This is a great resource for the new diabetic, and I would encourage you to do this while you are adjusting to the new pump.

Stay tuned for more info on adjusting to the pump.

[JDRF-Team-LRS]

I'm happy to tell you that I find the pump exactly as you describe:  freeing.  

I am 48 and have had DM for about 35 years.  Like you, I was taking multiple injections (but for many years & before Lantus was invented).  What I love (yes, LOVE) about pumping is that once I learned the techniques (some from CDE, some from my endo, soem from the manual, and LOTS from folks like us "in the trenches") ... I was able to adjust my DM and my insulin to MY life and not so much the other way around.  I have been pumping for about 8 years and got my newest pump just last week.  There are several excellent pumps on the market.

Are you pretty comfy with technology in "general"?  Have you begun to get the hang of carb counting? and how 'bout finger sticks?  All those skills are used in pumping.  Because pumps are computer-mechanical devices, they are fallable, so please do keep syringes & insulin on hand as "low tech backup"

On the pain & burning from Lantus, these tips might help you 'til you start pumping ... keep your open vial of Lantus at room temp, try your best to shoot into fat & not muscle, and try to inject the insulin slowly.  The last tip is more "visual" but if you can calm yourself and put your mind in a more pleasant place before you take your shots, somehow the insertion seems less onerous.

Please take heart, Tony.  Being dx'd just in August means you're really a newbie and dealing with a LOT of info, some of it scary and some of it potentially depressing.  Once our bodies get back to a more healthy state, life DOES return to much more normal.  I think of myself as an "old timer" having had this for so long, but my sister has had it 10 years longer, and I've met others who've had it 50 or 60 years.  This means there are folks out there who have managed to create full, rich, wonderful lives even with DM.  

I hope this helps ... and I hope you'll post again here.

[JDRF Volunteer WAK]

My daughter is on the pump since this past January.  It has returned our life to a more "normal" way of doing things.  She has to change her site every 2- 3 days.  She says that the site change feels the same as a shot.  Good luck on the pump.  I am assure you will do fine.

[TonyAlmeida]

Thank you everyone.

Like probably every newbie who first gets diagnosed, I feel like a blind person fumbling around in the dark.  Sometimes I actually busy myself enough to temporarily forget I'm stuck with this forever - then meal time comes around.

It's the "forever" part of this that really hurts the most.  And the question, when I become older and unable to take care of myself like I do now .... who will.

I'm 36 years old - and today I almost cried because I found out I could have a small Wendy's hamburger (no cheese) for lunch.  Something I took for granted just weeks ago ....

Thanks again.

[JDRF Volunteer WAK]

Tony - take comfort in the fact that once you are on the pump you can have the big hamburger at WENDY's.  When you get older thinks will work out, hopefully by then they will have a cure for this disease.

[JDRF-Team-LRS]

You are in very very good company.

Feeling deprived about what we should/shouldn't eat can be overwhelming & discouraging at first.  You are right that a noticeable aspect of living "carefree" is gone for us.

As many long-timers probably have noticed, too, as human beings mature & age ... most of 'em end up where we are (eat balanced meals, exercise, manage family issues, find constructive ways to dissipate life's stresses, accept the lack of "carefree" lives, etc.).  We do have a slight advantage in coping with aging, I suppose, because we are encouraged to begin being actively responsible at a young age.

You seem to be wonderfully aware of your emotions and because of that, I am certain, that long before you expect to be ... you, too, will encouraging someone who comes along with a new DM diagnosis.

I hope you'll share your progress toward pumping; I always enjoy brainstorming & trading tips 'n' tricks with other pumpers.  Newly diagnosed folks get the latest info and become a resource to us "older" ones, too :-)

[TonyAlmeida]

Well - just so I can tell someone and feel better - my pump finally arrived a few days ago.

This was after my insurance and the 3rd party medical equipment vendor they use lost my paperwork 3 times .... I finally had to conference call the two and have one fax and one receive at the same time.

Then the medical equipment company sent the wrong length infusion sets, even after I told them I needed shorter ones.  :^(

The big problem now - is getting a pump trainer to configure the pump and train me in its use (which doesn't look too hard).  My present endo's pump tech didn't seem too interested in setting up an appointment - she waited like a week or more before she would return any calls.  At first she didn't even want to discuss the option of a pump since my endo initially was only promoting the 4 shot regiment.  And then when she did, it was to call and say "I don't know when we can do it" .... adding it may take weeks or more from now.  Maybe sometime in December *if* the endo had time or wasn't on vacation.  :^(  This was like a punch in the stomach.  Then the interesting side note was that they would have to hospitalize me for a day or so - which every pump user I talked to said it was an Office Visit training procedure.

I definitely felt like I was getting blown off and it sure feels like I've had to fight to get this.  So I've switched to another endo's office to have it setup there .... ever since I've been diagnosed, *everything* seems to not go right or you have to work extra hard in order to get something done or answers.  :^(

The pump I have is one of the Pardigm 712s ....

[JDRF-Team-sgg]

You need to learn as much as you can about diabetes and its treatments in order to take care of yourself. Yes, if you have to change doctors to get care that you feel is quality medical care, do so. Those of us who are old-timers know and can pass along to you that it does get easier in time to do what is necessary to stay healthy. Right now, the maintenance of those blood sugars may be all-consuming for you, but as you get used to the routine, you will develop a sensitivity to how you feel and a second sense about what you can eat when you can eat. It becomes very natural. And you can be active and have a very normal life once this becomes second nature to you. Keep your chin up -- the first few months are the hardest, as you develop different habits. Your healthier lifestyle will have its benefits, and you will find that you may actually be healthier in many ways than your peers who neglect their health. Hang in there!

[JDRF-Team-LRS]

The Paradigm is a great pump and I also encourage you to find an endo or CDE who will work with you.  You might look in your phone book for a chapter of JDRF and call them to ask about endos and CDEs in your area who work with pumpers.  Those folks'll likely be informed (since many of them are and/or know many diabetics).

There is diabetes bulletin board run by good folks at Joslin Clinic.  I've read posts there in the past where the Joslin staff offered to make referrals for folks looking for medical care.  The website is:
http://chat.joslin.harvard.edu:8080/~diabetes

Keep us posted on your progress!

[TonyAlmeida]

FINALLY!

Tomorrow I get the pump configured in the afternoon.  My last Lantus injection is tonight.  Switching endos definitely was a good move, since my first one didn't seem to care at all.

[TonyAlmeida]

Well - this is the first full day with the pump.  Sleeping wasn't a problem like I thought it would be.  I didn't roll over on the pump or infusuion site like I was scared I would.  

I'm using the QuickSet. The cannula did sting for a little bit when I first put in place at the doctor's office - they had me use IV prep so I figured that was it and the fact my body isn't used to something like that being inserted into me.

I was *expecting* not to feel anything when I'd bolus - but I can feel the insulin going in.  Not painful, just a *different* .... like a tiny pinch I guess.  Maybe I got too close to nerve - or maybe it's just me being nervous and concentrating on that area too much.  My sugars are in their usual 80-90 / 90-100 range and the cannula doesn't hurt any when I touch it, detatch from it, no redness etc.

This morning's shower was a little adventure.  I could disconnect easily, but getting the shower cap on was a different story.  Took me a few minutes fumbling until I figured out I had to push down gently a little and turn (while gently squeezing the tabs) to get it to go on.  I was afraid to push even lightly on the cannula - but found out it didn't hurt.  (I also had these images on my head that the adhesive wouldn't hold and the entire cannula would turn - that didn't happen).

The Paradigm 712 has a little weight to it - but not as much as my old full screen alpha-numeric pager.  At times, I forget it's even there.  :^)

The one noticable difference this morning .... this was the first morning in months that I didn't wake up with an upset stomach or feeling worn down and sick.  And I didn't dread eating breakfast since I didn't have to do a *needle* bolus injection (shots still depress me - call me a chicken, but I still don't like sharp pointy things).

[TonyAlmeida]

Well - 4 pump infusion site changes later (the 5th is tomorrow) and I'm still living.  I must be doing something right with the pump as my sugars have been staying in the 80s.

My two biggest problems now - keeping bubbles to a minimum when filling the resevoirs and not *hesitating* when I use the QuickSet infusion applicator (i.e. Okay, push the buttons now .... no wait .... deep breath .... now .... uh, on the count of 3 .... 1, 2, 3 .... sigh, I can do this, push the buttons ....).  More of a mind over matter thing.

[JDRF-Team-LRS]

Tony,
I just noticed your comment from waaaay back on Dec 1, but I had to reply... The way you describe getting psyched for "pressing the button" is soooo familiar to me!!  I would like to try the quick set & the serter so I can "press the button." ... I currently use the Tender sets which ahve a very long insertion needle.  I chose this set because, just like I did when taking shots, I am verrrrry slooooow ... poking a bit here & there to find a spot of skin that doens't make me flinch.

I'm hoping that I can cut my insertion time by MANY minutes with "just" the button press.  From your description, I know I can make the get-psyched-to-press-the-button last a long time, too, tho'.

Thanks for sharing your story ... it really hit home for me.  Hope you're a pro at it now, nearly a month later!