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Author Topic: How do I start Home dialysis?  (Read 5411 times)
Lilu323
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« on: September 02, 2008, 08:15:49 PM »

I had no idea you can do hemodialysis at home!!! Who,Where, & How do I get the information if I am a good candidate for this??  ???
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Adam_W
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Me with Baron von Fresenius

« Reply #1 on: September 02, 2008, 08:32:28 PM »

You can go to www.homedialysis.org and find a centre in your area that offers it, and when you find one, you're unit's social worker should be able to work things out from there.

Adam
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-Diagnosed with ESRD (born with one kidney, hypertension killed it) Jan 21st, 2007
-Started dialysis four days later in hospital (Baxter 1550-I think, then Gambro Phoenix)
-Started in-centre dialysis Feb 6th 2007 (Fres. 2008H)
-Started home hemo June 5th 2007 (NxStage/Pureflow)
-PD catheter placed June 6th 2008 (Bye bye NxStage, at least for now)
-Started CAPD July 4th, 2008
-PD catheter removed Dec 2, 2008-PD just wouldn't work, so I'm back on NxStage
-Kidney function improved enough to go off dialysis, Feb. 2011!!!!!
-Back on dialysis (still NxStage) July 2011 :(
-In-centre self-care dialysis March 2012 (Fresenius 2008K)
-Not on transplant list yet.


"Don't live for dialysis, use dialysis to LIVE"
Lilu323
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« Reply #2 on: September 03, 2008, 07:52:22 PM »

Thank you so much for the information. I added the site to my favorites. Looking forward to learning about it.
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Vlynn
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« Reply #3 on: September 04, 2008, 12:09:39 PM »

OMG it's so easy I helped my mom set up her machine NxStage is the best!!! We moved NY about a year ago and we started off with our facility they are on call for us 24 hours!
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G-Ma
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« Reply #4 on: September 04, 2008, 12:50:43 PM »

my 2nd day at home and everyone is fighting for a chance to set it up....getting ready to go....very easy....make sure you know the trainer has experience before you go in and find out what you need to supply and have fun with it.
Ann
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
paris
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« Reply #5 on: September 04, 2008, 01:58:53 PM »

Lilu, that is one reason this site is so great.  You learn about things that your doctors never tell you about.  Keep us posted as you learn more about home hemo.
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Lilu323
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« Reply #6 on: September 05, 2008, 07:14:07 PM »

Who puts in the needles? Do you learn to do it yourself? Can you have a nurse come to the house and do it? Are you alone when you do it?? What happens if something goes wrong with you or the machine? What do you do or who do you call??? I sound a little crazy..long stressful day.sorry
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G-Ma
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« Reply #7 on: September 05, 2008, 08:05:24 PM »

I put in my own needles.  I started when I got my new fistula...only my daughter in law and I stick it.  I learned iduring in center but was then trained during nxstage training.  Davita/NxStage want you to have a partner all the time. Davita/NxStage gave us all kinds of phone numbers to reach anyone at any time and you learn not to panic when the alarms go off..I was panicked when I started training and today was first day alone with my granddaughter helping and we did great, it was quiet, sat in my living room, didn't have to leave home...I love it.
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
twirl
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« Reply #8 on: September 06, 2008, 04:52:51 PM »

G-ma   you are so brave....... my hero
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G-Ma
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« Reply #9 on: September 06, 2008, 05:46:29 PM »

thanks twirl...I think we are all brave in our own way and many times we don't see our own bravery but do see other peoples so we all need to give ourselves a pat on the back...ta da....   :yahoo;
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Lilu323
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« Reply #10 on: September 06, 2008, 06:33:55 PM »

wow GMA you are awesome! you help others gain strength
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G-Ma
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« Reply #11 on: September 06, 2008, 06:40:58 PM »

Thanks...ok I'll be the presidential pat on the backer....what a title huh....
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
Lilu323
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« Reply #12 on: September 07, 2008, 06:28:08 PM »

 :rofl;  Serioulsy though hopefully one day I can acheive that.
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monrein
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Might as well smile

« Reply #13 on: September 07, 2008, 06:31:30 PM »

I hope you can too Lilu.  G-Ma is inspirational and courageous and you CAN follow her lead.  I'm sure of it.  Now YOU must be sure of it too and it will happen.  All of us here will be behind you, cheering you on all the way.  :cuddle;
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Lilu323
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« Reply #14 on: September 08, 2008, 12:42:27 PM »

Thank you so much monrein! It feels nice to know that! I return the same back of course!
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kitkatz
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« Reply #15 on: September 08, 2008, 05:30:55 PM »

The first step is to contact your social worker at your clinic and tell the head nurse you want to do home hemo.  Then pester the hell out of them until someone comes to shut you up about it and gives in to your wants.
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Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Lilu323
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« Reply #16 on: September 10, 2008, 05:44:04 PM »

When I start getting a little bit more use to the dialysis then I will def. start the wheels rolling on that!
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monrein
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Might as well smile

« Reply #17 on: September 10, 2008, 05:47:58 PM »

Will they let you start putting in even one of your own needles?  Would you consider this? 
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Lilu323
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« Reply #18 on: September 10, 2008, 05:54:43 PM »

My unit knows that when I am ready I want them to show me how to cannulate myself. I beleive there is one or two other people that put their own needles in. I am a certified phlebotomist but thats not going to help me with 16 gauge needles   :-\
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monrein
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Might as well smile

« Reply #19 on: September 10, 2008, 06:01:27 PM »

Home dialysis or no home dialysis, if you can learn to cannulate yourself you'll be eliminating a lot of the stress that comes from the uncertainty of others sticking you.  Especially if you ever travel anywhere and your fistula is an unknown quantity to everybody at the clinic.  The more control the better I always say.  But of course you need to be ready and you can start out with just one needle.
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
Lilu323
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« Reply #20 on: September 10, 2008, 06:15:00 PM »

I would start with in clinic dialysis. Then after a  lot of practice I would go to home but thats not anytime soon.
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dwcrawford
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Getting the heck out of town.

« Reply #21 on: March 08, 2009, 08:24:10 AM »

I'm exploring trying to make rational decisions about dialysis.  I live alone.  As far as I can tell, I'm the oldest, or one of the older, of the people in here.  I have no family to help with dialysis.  Is HOME Hemo out of the question for me?  Do you think I could find a trained person to come to the house for two hours six days per week?  I mean for a reasonable amount of money (professional nursing is out of the question).  My insurance won't cover that or rides to and from the center.  ( don't see well enough to drive that much and also I hear that the treatment can really bum you out making driving difficult.  Expenses are certainly something I need to think about (although not priority at this point).

My doctor says NO -- but who knows but I might find another doctor.  (just kidding xxxxx and staff if any of you read this).

Thanks for reading.  This is one of my lesser concerns at the moment, but I'm trying to put it ALL together.

 :wine; ;musicalnote;  Wine and music... that's what we should be doing anyway!  I could absolutely go wild with all these cute little peope and faces.  What are they called?
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
jbeany
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Cattitude

« Reply #22 on: March 08, 2009, 06:03:28 PM »

dw - have you looked into PD?  If that's an option, it might be easier to do that alone by yourself.

If you can afford to pay someone to be your home hemo aide, then there's no reason you can't do it at home.  If you are doing NxStage, the person doesn't have to be a trained professional, just someone with the time and patience to learn the machine.  Maybe you could find someone who would be willing for a nominal fee - maybe a retiree who wants a part time job.  Home dialysis has a lot of benefits.  It's worth looking into.
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"Asbestos Gelos"  (As-bes-tos yay-lohs) Greek. Literally, "fireproof laughter".  A term used by Homer for invincible laughter in the face of death and mortality.

dwcrawford
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Getting the heck out of town.

« Reply #23 on: March 11, 2009, 06:37:00 PM »

Thanks... can some one tell me what PD is and NcStage.  I know.  I know.  Look it up!  Thanks for that tip my friend.
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
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