There's no place like home, Toto, no place like home!

[jbeany]

That's it - I'm calling my machine "Toto" - sounds about right, doesn't it?  I'm on day 3 of training.  So far, it's going really well.  Today I hooked everything up by myself.  There are a lot of steps to it all, but they give you very detailed instructions, so it's just a matter of taking things one at a time.  I'm getting better at the cannulating, too.  My venous is still giving me fits, but it will work eventually.

I wanted to do 5 days a week (3 on, one off, 2 on, one off, etc.), but my nurse was kind of hesitant since this is all new to her as well.  Thankfully, the NXStage rep suggested a really good compromise.  I'm going to do it in sets of 3's - 3 days on, one day off, repeat.  Depending on how the timing works out, some weeks will be 6 days, some will be 5.  The machine makes the fluid in 60 L batches, so it is just enough for me to do 3 days in a row anyhow.  The mixed fluid expires after 3 days.  With the 3-1 rotation, I never waste fluid. 

I've got to say, more frequent dialysis is wonderful for fluid gains.  I actually came in .5 under my regular dry weight this morning.  It's been warm, so I managed to sweat off what little I drank in a single day.  I'm running at 450 pump speed, so with no worry about how long it's going to take to get fluid off, my session time is going to be really short.  When we get set up at home, I should be able to do everything, start to finish including clean-up and holding sites, in less than 3 hours.  That's 15 or 18 hours a week, instead of the 30 some it takes me now with all the driving I do to get to the center.  Plus, I'm setting Toto up in my craft room, so I will have all my craft supplies right in front of me, and will be able to make things that I can sell while I'm dialyzing.  I can turn my time in the chair into profit for a change!

There's no place like home!!!

[okarol]

That's sounds so much nicer that in-center - hope it works out great!

[thegrammalady]

sounds wonderful, jbeany, i'm glad for you

[Sluff]

Congratulations JB. 

[Adam_W]

Congratulations, jbeany. I'm glad your finally a NxStager. 

Adam

[kidney4traci]

I am happy for ya!  Welcome to the nxstage club!  450, wow!  What's the time that your on?  What kinda crafts you makin?

[angela515]

 

[Wattle]

   Woohoo JB thats great! Shut your eyes and click your heels. .... there is no place like home....no place like home.....

Look how far you have come. Well done.   

[Joe Paul]

Sounds great Jbeany, hope it works out well for you.

[skyedogrocks]

Yeah for Toto!!  Glad you are enjoying your NxStage!  Hopefully your nurse will work with you to get you to 5 days a week and at pump speed 500.  That is what Rob is on now.  She works with his flow fraction so that his blood work comes back at 2.0 for cleaning.

Rob loves the fact that he can be more liberal with his fluids.  He works outside in the summer and it kills him not to drink his normal 1/2 gallon to 1 gallon of water a day.

I give you guys so much credit for doing self-cannulation (heck, for doing dialysis!).  After 3 months Rob is finally at ease about sticking himself. 

[Hawkeye]

 

[kitkatz]

Great job on self cannulating and on training. Good luck with Toto.

[goofynina]

Toto?  That is too cute!!  Hope everything continues to go well for you once your out of training JB 

[jbeany]

I am happy for ya!  Welcome to the nxstage club!  450, wow!  What's the time that your on?  What kinda crafts you makin?

I'm running about 2 hours and 20 minutes total right now.  As for crafts - Quilts mostly.  I also make teddy bears, small cartoon scupltures with oven bake clay, doodle on the scroll saw, and make purses and other fabric doodads like little boxes. . .most of it is stuff I end up selling.

Woohoo- got both my arterial and venous in without help today.     And left another .4 kg under what I left at yesterday.  They stopped the rest of my bp meds when they started me on the NxStage - apparently, my bp was too low to let me get to my real dry weight on the clinic machines.  And here I was getting frustrated because I thought I had stopped losing weight. . .

[Black]

Congratulations     Welcome to the NxStage club.

"Toto" is a great choice!!  There really is no place like home. ( but Key West comes close)

[jbeany]

Woohoo!  We're not in clinic anymore, Toto!  Yesterday was my first run at home.  It went pretty smoothly.  Fresenius sent those wingeater needles, and I'm actually finding them easier to use than the Baxter ones the center had.  Both sticks went in easy as pie.  My pressures were lovely, and my run was only 2 hours and 11 minutes.  The only problem we're having is the scale the center provided.  It's not digital, and it's marked off in half kilos, which makes it really difficult to read in the first place.  It's also completely inaccurate.  I can get on, get a weight, get off and right back on, and it shows I'm a kilo or two heavier or lighter than 30 seconds ago.  Even putting my feet back in exactly the same spot doesn't make any difference.  So I need a better scale ASAP.  One good enough to register the less-than-one kilo gains I get from day to day is going to be more money than I have right now, and it will take a couple of weeks for the center to get anything ordered and shipped to me.  so I'm going to have to guess at my weight and fluid gains, and take off fluid based solely on how puffy my fingers and ankles look.  Other than that, it's wonderful to be doing it at home instead of driving to the center!

[goofynina]

So happy things are going well for you Jbeany,    Now if that Wizard would just hurry up and get you your kidney huh?   

[Sluff]

Congratulations JB!!

[MyssAnne]

Congratulations JB!!!! That is WONDERFUL news! I'm so glad it's going well for you!!!! There IS no place like home, is there?

[Wattle]

  Wooohoooo Dorothy!  (Jb)

I just caught on that you are home from training 


You did it! I am so happy for you {{{hugs}}} Don't underestimate your achievement, you have come along way!!       

[okarol]

Great JB - so glad it's working for you!

[goofynina]

OK, now i MUST watch Wizard of Oz, lol,  thanks guys  

[Wattle]

OK, now i MUST watch Wizard of Oz, lol,  thanks guys  

Are you kidding me Goofy? Have you never seen The Wizard of OZ?  "I'm melting.....I'm melting......"   I love that movie!

[goofynina]

OK, now i MUST watch Wizard of Oz, lol,  thanks guys  

Are you kidding me Goofy? Have you never seen The Wizard of OZ?  "I'm melting.....I'm melting......"   I love that movie!

Oh heck yah,  I love it, but hadn't thought about it in awhile (a long while) But thanks to Jbeany and all the talk about Toto and Dorothy and the slippers and....................... I'VE JUST GOT TO WATCH IT NOW!!!  lol, sorry, kinda lost myself for a minute there 

[jbeany]

"Weeeeeee represent the dialysis guild, the dialysis guild. . . "