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Author Topic: Son on second week of NxStage  (Read 2600 times)
melissahumm
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« on: June 25, 2008, 07:25:15 PM »

Well it has been a long ride for my son.  After being on hemo for 9 years,he is now doing dialysis at home.  I have to admit,that I wasn't emotionally prepared for what was about to happen.  Even though I have been at his side for most of his runs,I was overcome with sadness the first few days on NX Stage.  I guess when you go to a center three days a week,it is easy to put your situation out of your mind for the "off" days.  The first few day of home tx's,I felt like reality hit me in the gut  From the moment I saw all the supplies,to watching my "baby" stick himself ,I felt very overwhelmed.  Luckily,he wasn't.  I am good at keeping these feelings to myself.  We purposely made him go to most of the training himself.  It is very important for him to learn not to depend on us.  If I could,I would do it all for him,but I know he needs to learn to be independent.  He wizzed through the training in record time,and was the darling of the unit!!  I see him flourishing on this new system.  He has involved his friends,making them pull out his needles!  His blood pressure has dropped and he feels free.  I think that for the first time,he feels that he can do this the rest of his life.  The only problem we have had is with making a batch!!We screwed up and blew through two pure pacs in two days!!  NXStage is sending us more.  They have been great to talk to.  I hope this keeps going well.  My son would like to move out someday.  He goes to college,but lives at home.  Thanks for listening!!!  Bye the way,I am still in amazement that my son can do all this stuff,yet he "can't" make his own mac-n-cheese!!!  Think he is spoiled!
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okarol
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Photo is Jenna - after Disneyland - 1988

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« Reply #1 on: June 25, 2008, 09:19:53 PM »


It sounds very encouraging that your son has done the training and is taking an active role using Nxstage. I hope it gets easier over time. It's really overwhelming to have your kid on dialysis, and I agree, when it's in-center it easier not to feel the angst of what they are going through. But look mom, you've had a lot of changes over many years and you and your son have adapted and gotten through it. I pray you will feel better having seen his independence increase. As far as cooking, I think until they HAVE to, most young adults don't do it unless it's something they enjoy. Jenna is still at home at 22 - but she's working and becoming more and more grown up. Baby steps!
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Admin for IHateDialysis 2008 - 2014, retired.
Jenna is our daughter, bad bladder damaged her kidneys.
Was on in-center hemodialysis 2003-2007.
7 yr transplant lost due to rejection.
She did PD Sept. 2013 - July 2017
Found a swap living donor using social media, friends, family.
New kidney in a paired donation swap July 26, 2017.
Her story ---> https://www.facebook.com/WantedKidneyDonor
Please watch her video: http://youtu.be/D9ZuVJ_s80Y
Living Donors Rock! http://www.livingdonorsonline.org -
News video: http://www.youtube.com/watch?v=J-7KvgQDWpU
Bill Peckham
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« Reply #2 on: June 25, 2008, 10:20:04 PM »

I am very impressed mellissa - you've made the right call in stepping aside and letting him learn to do this.. Is he talking about traveling?

Great job mom!
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
Zach
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"Still crazy after all these years."

« Reply #3 on: June 26, 2008, 08:20:54 AM »

This is wonderful news.
 8)
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Uninterrupted in-center (self-care) hemodialysis since 1982 -- 34 YEARS on March 3, 2016 !!
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
No transplant.  Not yet, anyway.  Only decided to be listed on 11/9/06. Inactive at the moment.  ;)
I make films.

Just the facts: 70.0 kgs. (about 154 lbs.)
Treatment: Tue-Thur-Sat   5.5 hours, 2x/wk, 6 hours, 1x/wk
Dialysate flow (Qd)=600;  Blood pump speed(Qb)=315
Fresenius Optiflux-180 filter--without reuse
Fresenius 2008T dialysis machine
My KDOQI Nutrition (+/ -):  2,450 Calories, 84 grams Protein/day.

"Living a life, not an apology."
melissahumm
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« Reply #4 on: June 26, 2008, 10:10:14 AM »

My son is already planning his trips!!  We always did travel on hemo,so we are excited to try the NX stage.  I just need more money!!  The problem is,he wants to go out of the country,and I know this is not recommended.  Thanks everyone. 
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kitkatz
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« Reply #5 on: June 26, 2008, 04:34:07 PM »

Go, sonny,  go. It is great he is taking responsibility so well  for Nx stage and is feeling better.  Travel on!
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lifenotonthelist.com

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
monrein
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Might as well smile

« Reply #6 on: June 26, 2008, 05:57:24 PM »

Sounds like you're both doing well and it's great that David is taking charge of his own treatment.
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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
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