Question for those with a DPS...

[Jeff Long]

Some background, a disclaimer, and a question...

Background: Had my DPS "installed" in June 2013. Pretty unremarkable procedure & recovery; only issue was the grounding wire pulled out about 2 inches a few days after surgery. I'm still 'grounded' (despite what my bride would say!) so other than some 'extra' wire hanging out, it's no big deal. Pacing 4-6 hours a day with no discomfort. Easy stuff, right?!?

Disclaimer: So I don't get lumped in with (or blasted like?) the DIHALS whackos, know that I have been and am still addressing my issue with the medical folks from the ALS clinic. I am asking here because sometimes "X worked for me" is as valuable as anything else!

Question: Anyone else having soreness or infection at the DPS wire site? At my last quarterly appointment I had an infection so took a round of antibiotics and all was well again for a couple of weeks. Change the bandage every couple of days and clean the site with alcohol and apply Neosporin. Still, it frequently happens that almost overnight I'll go from 'all clear' to sore, red and bleeding at all of the wires. Not doing anything differently in the times between 'good' and 'bad', so I have no clue what's causing the change. This is nuts!

So, as so often happens on this forum, if anyone has found a way around this madness and can share them, I'd appreciate some tips!

 

[patrick123]

I have had my DSP since sept. 2012 . I only clean the plug with alcohol. At the wire site I use a liquid antiseptic and let it air dry. And always keep it dry when I shower. I have the peg tube and do the same with that. I have never had an infection (fingers crossed if I could) hope this helps.

Patrick

 

[Janie H]

I spoke with the nurse at my clinic today and she said that she would not recommend the DPS, she said that she has not seen much good from them and some people even got worse, my breathing is so bad that they are considering leaving me on steroids or something similar for good.

 

[Bad Balance]

Ok, I used to have a rule, no acronyms with out using the full spelling of words at least once on each page ...lol.
For those of us not familiar, ...DPS ?

 

[Nikki J]

It is the diaphragmatic pacing system Jerry!

 

[Jeff Long]

Ok, I used to have a rule, no acronyms with out using the full spelling of words at least once on each page ...lol.
For those of us not familiar, ...DPS ?

Bad... in my case DPS stands for Dude Posting Stupid!
I know better, but I'm catching the internet laziness bug WRT grammar.
Dang... did it again! :twisted:

 

[affected]

me2 n I h8 it!

 

[MaxEidswick]

>me2 n I h8 it!

Tillie the Teenager

 

[FSHolbrook]

My neuro suggested that I try it. I would not take what a nurse says as gospel. they know a lot but, not necessarily about DPS.

Rick

 

[AzBabs]

I'm a RN & scheduled for Peg & DPS. From RN standpoint, alcohol is way too harsh. I was a home health nurse for pediatric patients. Most had a Peg and or a Trach. We always washed the sites with gentle soap & water w a
q-tip then rinse well. Make sure site DRY before adding split 2X2. Repeat 3 X a day. My patients had the best looking sites without granulous tissue. Haven't heard about site care for DPS, but can't imagine much different. I know some pals swim & shower without covering DPS wires & have no problem. Don't put alcohol on your skin.

 

[affected]

For the peg, which I imagine too is similar I like plain water wash, then salt water rinse. Dry well and apply a tiny amount of zinc barrier cream.

 

[Janie H]

My neurologist said that my breathing is too bad and he does not think it would be a good idea, lung doc has mentioned a trach, weird, I can still walk, eat, laugh, just can't breath well, it's like I am getting end symptoms first, I wonder if long term predisone is a option? Seems to lessen the symptoms, I can even do light house work when I am on the stuff, I used to hate the side effects but with all my many medicines, I don't have jitters or sleeplessness.

 

[MaxEidswick]

> I wonder if long term predisone is a option?


I am not an MD, but that is pretty dangerous stuff. My SIL had to use it during her bout with cancer and it resulted in her lungs collecting a liquid (water, I think) ... Make sure you sanity check that one with an ALS clinic.

 

[dalvin]

Janie, you might ask your doc about a nebulizer. My va doc prescribed one for me

 

[Janie H]

Make sure you sanity check that one with an ALS clinic.
They will give it to me if I get it.
Dalvin, I use my nebulizer every four hours, I have a asmtha attack (or something similar) if I don't.
Lung doc at the clinic put me on a round of Predisone 3/28 at my regular visit and asked if I had thought about a trachecomy (no, not yet) after a week on the predisone I felt great, a few days after it ran out I was suffering again, called the clinic and they gave me a month's worth, said if this didn't help, he would need to see me. started with four a day and goes down to one, I am on three a day now, I guess we will see.