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Author Topic: Multiple care partners  (Read 2951 times)
Angiepkd
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« on: February 03, 2013, 07:41:15 PM »

I am going to start my NxStage training soon and was wondering if anyone uses multiple care partners? My husband will be my primary helper, but he travels a lot for work. I have several people lined up to fill in when he is away. The team at DaVita seem to think they can train them on emergency procedures and it will be fine. Any thoughts or experiences where you passed out or needed your care partner to "save" you? I have read that some people do their treatments alone. I plan on handling everything myself, but am a little nervous about someone else having to help me if I am unconscious, etc.  I would love to be able to do this without inconveniencing friends and relatives. Thanks for your input!
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PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
M3Riddler
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« Reply #1 on: February 03, 2013, 08:51:07 PM »

I am going to start my NxStage training soon and was wondering if anyone uses multiple care partners? My husband will be my primary helper, but he travels a lot for work. I have several people lined up to fill in when he is away. The team at DaVita seem to think they can train them on emergency procedures and it will be fine. Any thoughts or experiences where you passed out or needed your care partner to "save" you? I have read that some people do their treatments alone. I plan on handling everything myself, but am a little nervous about someone else having to help me if I am unconscious, etc.  I would love to be able to do this without inconveniencing friends and relatives. Thanks for your input!

Angiepkd,

There is nothing wrong with having two or more care partners.  This is actually good as they can become burnt out at times and this would be a gret solution.  Try to have them both learn as much as they can along with you.  Even though you will be doing most of the setup etc yourself, it is still good to train the care partners on how to do this as well in case of emergency.
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KatieV
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« Reply #2 on: February 04, 2013, 08:49:45 AM »

I did my initial training with two care partners, my husband and my mom.  They both missed a session or two of training due to conflicts, but most of the time both were there.  I need assistance inserting the needles, attaching the lines, and doing rinseback at the end.  I can do everything else myself.

We also trained two of my sisters in the rudimentary basics of it.  They can insert the needles (I have buttonholes) and in an emergency, I can direct them on the procedures needed.  One of them recently passed her boards and is a certified RN.  Unfortunately, they have all been too busy to help for awhile now.
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
Angiepkd
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« Reply #3 on: February 04, 2013, 11:42:34 AM »

Thanks for the input!  My main concern is having one of my helpers panic in an emergency.  As long as I can talk them through it, they can handle it. But if I am unable to do that, I am a little worried lol! I guess I am asking an unanswerable question, but what are the odds that I would pass out, etc.? Any personal experiences with that? I am basically healthy (aside from kidney failure) and am VERY strong-willed, smart and capable. I know I can handle anything thrown at me, as long as I am awake and able to communicate. Maybe just needing a little reassurance?
Logged

PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
KatieV
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« Reply #4 on: February 04, 2013, 12:17:23 PM »

I've been on NxStage since October 31, 2011 (15 months) and have never passed out.  The closest I ever got was during a bad cramping episode (took too much fluid off).  I HAD to put pressure on my calves, so I carefully stood up with hubby's assistance, making sure my lines didn't pull.  My legs felt better, but I got very dizzy.  I was able to sit back down and he gave me more fluid (opening the saline line and a big glass). 

I think it is very rare that someone would pass out.  Maybe tell your care partner that if you pass out, the procedure is to call 911?
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~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
justjen321
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« Reply #5 on: February 04, 2013, 03:21:09 PM »

We have never had an instance where my husband passed out.

For me, I would stress that anyone who plans to be your care partner for emergency reasons be fully capable in those circumstances. We've never actually HAD an emergency, but I'm the type of person who wouldn't really get my heart rate elevated even if Hubby's venous needle popped out and started making our living room look like a 'Carrie' stage. It's just in my nature to remain calm, and carry on. Later, when things are all good, in my head, I'll be like 'Holy SHIT! I cannot believe that happened. That's SCARY'.

Passing out is a LOT less scary than blood flying, merely because so many people have issues seeing blood. When we were training, our nurse brought in a couple who were wanting to do NxStage, but the wife (caregiver) had a huge issue with blood. I invited them in and encouraged them to chat with us for awhile, to see how she would do with being in the same room with the blood clearly visible in the lines. Poor woman, they chatted with us for about ten minutes, she never got much farther than right inside the door, and she was visibly green when they left. I'm pretty sure they decided not to do Nx Stage because frankly, if you start spraying blood, you need someone perfectly comfortable diving into the spray to make it stop. :)
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TIA reveals failed kidneys (completely unexpected) January 2011
Husband on home PD since May, 2011
Switching to NxStage Home Hemo Nocturnal early spring of 2011

http://failedbeans.blogspot.com/
Angiepkd
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« Reply #6 on: February 04, 2013, 03:32:42 PM »

Thanks KatieV and justjen! This helps So much!  I went with my brother in-center a lot, and it seemed like someone was always alarming or needing assistance. I have heard that using NxStage at home eliminates much of this. I am very lucky that I have an iron stomach when it comes to blood, etc. I have an accident-prone husband and 2 wild boys (who are grown). Although I didn't appreciate it while I was making trips to the ER, I am thankful that they toughened me up now lol! I keep telling myself that if I can handle the 3 of them, I can handle anything!
Logged

PKD diagnosis at 17
Cancer May 2011, surgery and no further treatment but placed on 2 year wait for transplant
October 2011 first fistula in left wrist
April 2012 second fistula in upper arm, disconnect of wrist
January 2013, stage 5 ESRD
March 2013 training with NxStage home hemo
April 2013 at home with NxStage
April 2013 fistula revision to reduce flow
May 2013 advised to have double nephrectomy, liver cyst ablation and hernia repair. Awaiting insurance approval to begin transplant testing. Surgery in June.
June 2013 bilateral nephrectomy.
August 2013 finishing testing for transplant, 4 potential donors being tissue typed.
January 2014 husband approved to donate kidney for me
March 4th 2014 received transplant from awesome hubby. Named the new bean FK (fat kidney) lol!  So far we are doing great!
KatieV
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Gender: Female
Posts: 236

« Reply #7 on: February 05, 2013, 08:35:34 AM »

The last time I got an alarm may have been around Thanksgiving.  It was a weird three digit (cycler error) during Prime and I had to call technical support.  It's a rare occurence that we have an alarm.  Our runs are pretty quiet!
Logged

~~~~~~~~~~~~
March 2007 - Brother diagnosed with ESRD, started dialysis 3 days later
April 2007 - Myself and sister also diagnosed with Senior-Loken Syndrome (Juvenile Nephronophthisis and Retintis Pigmentosa)

Since then, I've tried PD three times unsuccessfully, done In-Center hemo, NxStage short daily, Nocturnal NxStage, and had two transplants.  Currently doing NxStage short daily while waiting for a third transplant.

Married Sept. 2011 to my wonderful husband, James, who jumped into NxStage training only 51 days after our wedding!
~~~~~~~~~~~~
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