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Vt Big Rig
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« on: April 25, 2016, 04:37:23 AM »

April 15, 2016 marked one year since I have been on dialysis. Most regulars know I am on NxStage and we have been doing well. The onset of this situation got my bride of 41 years and I thinking and we have been working towards this week for 6 months now.

Our house in Indiana is sold, we close on a new house in Vermont on May 3, my wife's last day at work is tomorrow and mine is Friday. Friday afternoon we hook up the camper to my truck, load the dog in her car and head back to Vermont. We lived there for 20 years before work took me away 16 years ago.

Still there are my son, my three grandsons (7,3, and 9 months), and my 3 sisters are all in New England. We are very excited about going into retirement and "making every day a Saturday".

Although I was to retire my boss asked me to continue on a part time basis remotely. This will work out well even though I was prepared to not have that income.

So any fellow patients in Vermont or even New England, be seeing you soon. I can't wait.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
kickingandscreaming
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« Reply #1 on: April 25, 2016, 06:36:59 AM »

Welcome back to merry ole New England.  I have lived here, in the Greater Boston area, since 1967.  It's a great place.  The weather stinks for the most part, but the consciousness is good, for the most part.  And it has great natural beauty-- as you well know as a former Vermonter.  Most people in other parts of the country don't realize how beautiful it is here. Sort of a woodland wonderland.  Of course, you also have mountains, green ones, hence the name Ver (green) mont (mountain).
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Simon Dog
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« Reply #2 on: April 25, 2016, 06:56:11 AM »

Congratulations.     Despite being a solidy Democtatic state, I think you'll have far fewer moonbats up in VT that we have in the DPRM.

Plus you have fields of cows instead of shopping malls.
« Last Edit: April 25, 2016, 06:58:03 AM by Simon Dog » Logged
Vt Big Rig
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« Reply #3 on: April 25, 2016, 07:14:26 AM »

Congratulations.     Despite being a solidy Democtatic state, I think you'll have far fewer moonbats up in VT that we have in the DPRM.


Except for Bernie ... LOL. I think he was mayor of Burlington when we left.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Vt Big Rig
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« Reply #4 on: April 25, 2016, 07:15:43 AM »

Welcome back to merry ole New England.  I have lived here, in the Greater Boston area, since 1967.  It's a great place.  The weather stinks for the most part, but the consciousness is good, for the most part.  And it has great natural beauty-- as you well know as a former Vermonter.  Most people in other parts of the country don't realize how beautiful it is here. Sort of a woodland wonderland.  Of course, you also have mountains, green ones, hence the name Ver (green) mont (mountain).

Actually K&S .... I grew up in Medford ....went to school in Lowell ... my wife went to school in Framingham.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
kickingandscreaming
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« Reply #5 on: April 25, 2016, 07:57:47 AM »

I think you are very lucky to have Bernie as your Senator (but then I may be considered one of those "moonbats.")  I'm grateful we have Elizabeth Warren  down here (Simon Dog undoubtedly doesn't agree with me on this).  I live right next door to Framingham (in a more rural enclave).
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Simon Dog
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« Reply #6 on: April 25, 2016, 03:27:29 PM »

You're right, I was very disappointed when Pocahantas Warren won the senate seat.

That being said,  some of my closest friends are moonbats.  My wife even voted for Obama the first time around (though we have all done a few things we aren't too proud of).   I consider moonbatism to be an affliction like ESRD, and do not hold it against the individual who suffers from that condition.   Like dialysis patients, some are very nice people.

And most importantly, your dog doesn't care if you are a D or and R as long as she gets food and belly rubs.
« Last Edit: April 25, 2016, 03:31:05 PM by Simon Dog » Logged
Charlie B53
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« Reply #7 on: April 25, 2016, 06:51:45 PM »

I hate to be envious, but I am.   I grew up in WA, the State, not the other one.  Can't imagine living in that one.

Moved to MO when Everett, WA closed the telephone company primary center and started routing all calls  here to the mid-west.   Wife was one of the few that transferred to keep the job.   8 out of 10 gave up and just left, filed for unemployment.  A couple had enough years they managed to retire.   That was in 96.   Patsy retired, in 02.  More or less forced into an early out.   The company had apattern of leaning on the older, most senior employees to get them out.  Hired part-timers so they would have to pay the higher wages, and PT do not get any benefits.  Company saves huge.    Nobody was willing to talk to a fed to do anything about it.  The company gets away with it.

Son followed us here.   Now we have a couple of Grandsons, I can't move back to the NW.  So I end up jealous of those that manage to return to the Mountains and away from the cities.   I miss the clean water, trout, saltwater fishing within a reasonable distance.  Snow capped mountains, elk, and so much I cannot even tell about it.

Enjoy, that why it is there.

At least you can still connect with us here so it's not really like you are going away.  Unless you are so far out in the woods there isn't any internet.    I'd have to get me one of this dish rigs.   I don't hear a lot of good about them but at least they do work, even if not as fast as we are used to it still beats the old dial up connections.

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Michael Murphy
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« Reply #8 on: April 25, 2016, 08:34:43 PM »

Hills and trees. Sometime this summer I will be moving to the Adirondacks in up state New York.  To a small town that is so far in the boondocks that the nearest Mccdonalds is 30 miles away.  A little noisey in the summer but real peaceful in the other 9 months.  The nice thing you have going is home hemo, I will have a 30 mile trek 3 times a week.  Oh well at least I will be out of New Jersey.
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PrimeTimer
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« Reply #9 on: April 25, 2016, 08:46:43 PM »

Well, you can...pack a punch
                     pack a wallop
                     be a pack rat (or pack animal)
                     back pack
                     pack it in
                     pack heat
                     pack on the pounds
                     be a pack horse
                     tell a pack of lies
                     own an alpaca.
Whatever you do, hope your move goes smoothly and that your new home will be JAMPACKED with LOTSA fun and fond memories! (and good luck setting up the NxStage!)   
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Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
Xplantdad
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Health is not valued till sickness comes. T.Fuller

« Reply #10 on: April 25, 2016, 09:11:50 PM »

Congrats on the retirement! Be safe on the move, too.... :beer1;
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My name is Bruce and I am the caregiver for my daughter Holly who is 26 years old and received her kidney transplant on December 22, 2016 :)
Holly's Facebook Kidney  page: https://www.facebook.com/Hollys.transplantpage/

Holly had a heart transplant at the age of 5 1/2 months in 1990. Heart is still doing GREAT!  :thumbup;
Holly was on hemodialysis for 2.5 years-We did NXStage home hemo from January 2016 to December 22, 2016
Holly's best Christmas ever occurred on December 22, 2016 when a compassionate family in their time of grief gave Holly the ultimate gift...a kidney!
Vt Big Rig
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« Reply #11 on: April 26, 2016, 04:43:50 AM »


Whatever you do, hope your move goes smoothly and that your new home will be JAMPACKED with LOTSA fun and fond memories! (and good luck setting up the NxStage!)   

NxStage has been harder to deal with than moving furniture. First, thought I could just take machine. OH NO! Must turn this one in and get a different one up there, (so much for a leisurely trip with stops along the way).

Then, new clinic (which is a different company) has me going in there for a treatment. I figure OK, then I can take machine and we are on our way. OH NO! ... You must come in for a week to "show us you know how to run machine". With all due respect we have been doing this for a year and I am still alive. Doesn't that prove we know how to do this. SILENCE.  The world is run by lawyers that write foolish procedures to CYA. :stressed;

I can't wait for the first treatment.  :sarcasm; Who wants odds I spend more time on paperwork than I do connected? And THERE AIN'T NO WAY my wife will let another cannulate me. So this should be interesting!!
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Simon Dog
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« Reply #12 on: April 26, 2016, 07:20:56 AM »

At least is sounds like you are jumping straight to NxStage, but with a week sentence in center.  That's better than being told "we have someone in training, then some vacations - you can get certified 3 months from now"
Quote
Oh well at least I will be out of New Jersey.
Congratulations.
« Last Edit: April 26, 2016, 07:22:12 AM by Simon Dog » Logged
Vt Big Rig
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« Reply #13 on: April 26, 2016, 07:45:25 AM »

Oh well at least I will be out of New Jersey.

And THAT is a good thing, for sure.....
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Michael Murphy
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« Reply #14 on: April 26, 2016, 10:58:31 AM »

If you want a long drive schedule in center stops along the way.  If it was me I would find large shopping area so my wife would have something to do during my dialysis.  Problem is she would be late picking me up.  I am jealous of your home hemo, the only paus I have in moving to the Adirondacks is winter trips to the center.  But I have a well and a small hous up there and I worry about the water draw on my well or storage space.  As soon as the new sorbet technology is available I want to switch to home hemo.

Spelling correct mod Cassandra
« Last Edit: April 30, 2016, 05:49:26 AM by cassandra » Logged
Simon Dog
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« Reply #15 on: April 26, 2016, 12:34:58 PM »

You can do home hemo using NxStage and bags of pre-mixed dialysate, which covers the well but not the storage space issue.  Thanks to the NY remote monitoring requirement for home hemo, it is possible to find centers in NY that support home hemo without a care partner.  If you pack the boxes floor to ceiling, you can use one wall in a room for storage.

If you want a long drive schedule in center stops along the way.  If it was me I would find large shopping area so my wife would have something to do during my dialysis.  Problem is she would be late picking me up.  I am jealous of your home hemo, the only paus I have in moving to the Adirondacks is winter trips to the center.  But I have a well and a small hous up there and I worry about the water draw on my well or storage space.  As soon as the new sorbet technology is available I want to switch to home hemorrhage.
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Fabkiwi06
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« Reply #16 on: April 26, 2016, 04:25:10 PM »

Congrats on the move! Hope y'all get settled in quickly! I'm sure it'll be nice to be closer to the grandkids, too  :clap;
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surprise kidney failure - oct. 2015
emergency hemo - oct. 2015
switched to pd - dec. 2015
transplant list - apr. 2016
Michael Murphy
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« Reply #17 on: April 26, 2016, 07:54:01 PM »

There is a center in Saratoga Springs that supports single person home hemo.  But there are better systems in the testing pipeline using sorbet tech.  Soppusedly they will require only 6 gallons of potable water per treatment.  When these are available I will switch.
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kitkatz
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« Reply #18 on: April 26, 2016, 08:34:23 PM »

Be sure to take time to enjoy the move.
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Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

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
Simon Dog
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« Reply #19 on: April 26, 2016, 09:40:20 PM »

There is a center in Saratoga Springs that supports single person home hemo.  But there are better systems in the testing pipeline using sorbet tech.  Soppusedly they will require only 6 gallons of potable water per treatment.  When these are available I will switch.
You are thinking about the Fresenius PAK which has been in  testing in Australia.   And, I believe the "6" is correct, but it's liters, not gallons.   I have heard, but not confirmed, that this unit gives a URR resembling conventional machines rather than the lower URR per treatment of the NxStage.

NxStage has a bicarb system (perhaps the System 2?) in the works, and Tablo has a nice unit that makes the dialysate on the fly using HP inkjet technology, but still uses non-trivial amounts of water.

New systems can be "just about ready" for years, so I respectfully suggest that "waiting for the next big thing" could be like waiting for a kidney.
« Last Edit: April 26, 2016, 09:42:35 PM by Simon Dog » Logged
Rerun
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Going through life tied to a chair!

« Reply #20 on: April 27, 2016, 08:26:20 PM »

Congratulations to both of you on Retirements.  I have friends in Essex Junction??  They just retired too.  They are not on dialysis but good friends who want me to come back and visit but I am too chicken to travel to another center and have some random person do my dialysis.  I do Nocturnal and am comfortable where I'm at. 

   :yahoo; 
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Vt Big Rig
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« Reply #21 on: April 28, 2016, 10:08:54 AM »

Congratulations to both of you on Retirements.  I have friends in Essex Junction??  They just retired too.  They are not on dialysis but good friends who want me to come back and visit but I am too chicken to travel to another center and have some random person do my dialysis.  I do Nocturnal and am comfortable where I'm at. 

   :yahoo;
Our grandkids are in Essex Junction. PM me.
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
Vt Big Rig
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« Reply #22 on: May 11, 2016, 04:47:10 AM »

Well, we made it .

Moved into the new house on May 3. I am REALLY getting sick of looking at boxes!! :banghead;

Biggest issue ... new dialysis center ...... back with Fresenius in Indiana they included my residual function in clearance calculations. I used to run over 3.0. Guess what ...here they do not...... so clearance first day was below 2. "We need to up your dialysate to 50 liters." WAIT ... I 'd like to talk to doctor. He wont be here till May 31st. WHAT!!

Next day clearance is 2.01. "We need to up your dialysate to 60 liters." WAIT  .....I'd like to talk to doctor..... he won't be here till May 31st. 

There was a neph that "admitted me" and she admitted what we were saying made sense but she would not change it because "I will not be your doctor".. WTF .... where the hell is the "doctor" then?

And they change the flow fraction so my time is about the same. This makes no sense to me  nor to my nurse in Indiana with whom we became great friends. My major reason for objecting (since it is not more time) is travelling. All those %#$@ boxes have increased by 50% whenever we travel. Hanging 8 bags was bad enough. How the heck we hang 12 is beyond me. :puke;

And it is amazingly frustrating when the tech says ... "You can talk all you want, but this is what WE consider adequate". Stick with tech work, buddy!!! :sir ken;

So all this meant we had to treat at the center all of last week and two days this week. Finally we came home with a cycler yesterday. Today will be running the water lines and getting all connected under the sink. Going to the center to start at 0930 really used up all the day. By the time we got out and home we did not have much time to get unpacked. Makes me like the NX Stage even more....... will be nice to be on our own schedule again.

On the GREAT side .... we have seen more of the grand kids in a week and a half than we did in two years. :yahoo;
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VT Big Rig
Diagnosed - October 2012
Started with NxStage - April 2015
6 Fistula grams in 5 months,  New upper fistula Oct 2015, But now old one working fine, until August 2016 and it stopped, tried an angio, still no good
Started on new fistula .
God Bless my wife and care partner for her help
KarenInWA
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« Reply #23 on: May 11, 2016, 06:57:45 AM »

I hate to be envious, but I am.   I grew up in WA, the State, not the other one.  Can't imagine living in that one.

Moved to MO when Everett, WA closed the telephone company primary center and started routing all calls  here to the mid-west.   Wife was one of the few that transferred to keep the job.   8 out of 10 gave up and just left, filed for unemployment.  A couple had enough years they managed to retire.   That was in 96.   Patsy retired, in 02.  More or less forced into an early out.   The company had apattern of leaning on the older, most senior employees to get them out.  Hired part-timers so they would have to pay the higher wages, and PT do not get any benefits.  Company saves huge.    Nobody was willing to talk to a fed to do anything about it.  The company gets away with it.

Son followed us here.   Now we have a couple of Grandsons, I can't move back to the NW.  So I end up jealous of those that manage to return to the Mountains and away from the cities.   I miss the clean water, trout, saltwater fishing within a reasonable distance.  Snow capped mountains, elk, and so much I cannot even tell about it.

Enjoy, that why it is there.

At least you can still connect with us here so it's not really like you are going away.  Unless you are so far out in the woods there isn't any internet.    I'd have to get me one of this dish rigs.   I don't hear a lot of good about them but at least they do work, even if not as fast as we are used to it still beats the old dial up connections.

Hey Charlie, I work for that phone company you speak of! Or, rather, what that phone company has become. I work in the big glass building in Everett, WA.

KarenInWA
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1996 - Diagnosed with Proteinuria
2000 - Started seeing nephrologist on regular basis
Mar 2010 - Started Aranesp shots - well into CKD4
Dec 1, 2010 - Transplant Eval Appt - Listed on Feb 10, 2012
Apr 18, 2011 - Had fistula placed at GFR 8
April 20, 2011 - Had chest cath placed, GFR 6
April 22, 2011 - Started in-center HD. Continued to work FT and still went out and did things: live theater, concerts, spend time with friends, dine out, etc
May 2011 - My Wonderful Donor offered to get tested!
Oct 2011  - My Wonderful Donor was approved for surgery!
November 23, 2011 - Live-Donor Transplant (Lynette the Kidney gets a new home!)
April 3, 2012 - Routine Post-Tx Biopsy (creatinine went up just a little, from 1.4 to 1.7)
April 7, 2012 - ER admit to hospital, emergency surgery to remove large hematoma caused by biopsy
April 8, 2012 - In hospital dialysis with 2 units of blood
Now: On the mend, getting better! New Goal: No more in-patient hospital stays! More travel and life adventures!
PrimeTimer
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« Reply #24 on: May 11, 2016, 03:57:46 PM »

Well, we made it .

Moved into the new house on May 3. I am REALLY getting sick of looking at boxes!! :banghead;

Biggest issue ... new dialysis center ...... back with Fresenius in Indiana they included my residual function in clearance calculations. I used to run over 3.0. Guess what ...here they do not...... so clearance first day was below 2. "We need to up your dialysate to 50 liters." WAIT ... I 'd like to talk to doctor. He wont be here till May 31st. WHAT!!

Next day clearance is 2.01. "We need to up your dialysate to 60 liters." WAIT  .....I'd like to talk to doctor..... he won't be here till May 31st. 

There was a neph that "admitted me" and she admitted what we were saying made sense but she would not change it because "I will not be your doctor".. WTF .... where the hell is the "doctor" then?

And they change the flow fraction so my time is about the same. This makes no sense to me  nor to my nurse in Indiana with whom we became great friends. My major reason for objecting (since it is not more time) is travelling. All those %#$@ boxes have increased by 50% whenever we travel. Hanging 8 bags was bad enough. How the heck we hang 12 is beyond me. :puke;

And it is amazingly frustrating when the tech says ... "You can talk all you want, but this is what WE consider adequate". Stick with tech work, buddy!!! :sir ken;

So all this meant we had to treat at the center all of last week and two days this week. Finally we came home with a cycler yesterday. Today will be running the water lines and getting all connected under the sink. Going to the center to start at 0930 really used up all the day. By the time we got out and home we did not have much time to get unpacked. Makes me like the NX Stage even more....... will be nice to be on our own schedule again.

On the GREAT side .... we have seen more of the grand kids in a week and a half than we did in two years. :yahoo;

Glad you made it to the new house. Sounds like the grandkids are providing some much-needed fun and diversion from all the dialysis stuff. Hope the new Neph listens to YOU and what has been working for YOU. I have no idea how to hang 12 bags or even 8. Yay for Pureflow! 
Logged

Husband has ESRD with Type I Diabetes -Insulin Dependent.
I was his carepartner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
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