Caregiver for New NxStage User in Georgia

[Hootie]

Hello,
I am the husband and caregiver for my wife who is type 1 diabetic for almost 48 years who was diagnosed with ESRD last year. We started in center at Nephrologist's request with ultimate goal to go home quickly. After getting her fistula in August we began in center in October 2014. In early December we began training on the NxStage system coming home the first week of January 2015. It has been a good experience with excellent support from the DaVita HHD nurse and the NxStage technical supported. They have been simply outstanding. We are in the final stages of transplant approval at Emory.

[MooseMom]

Welcome to IHD!  I'm very glad that home hemo with NxStage is working so well for you both.  Does your wife have a live donor lined up, or will she be placed on the waitlist at Emory?  I hope the final stages of her pre-transplant evaluation goes smoothly.  Please come back and keep us informed!

[Hootie]

Thanks.
No, we do not have a live donor. No one in our family is compatiable due to her O Negative blood type.  We will go on list when approved.

[PrimeTimer]

Welcome, Hootie!  There's so much info here to read, a little a lot of everything! So take your time and don't hesitate to ever start a thread or ask questions. You probably already found it but there's a whole section for NxStage users. By the way, you are so right about Nxstage Tech Support. Their tech's have been extremely patient and helpful to my husband and I. 

your name made me think of Hootie and the Blowfish....got a couple of their cd's. 

[renalwife]

Welcome, Hootie.  It is so good of you to take care of your wife.  I hope and pray that all goes well.

[Darthvadar]

  Hootie...

I fully understand where you're coming from... Was a carer for many years...

Hope to see ots of posts from you... We like the chaty ones... Makes the place 'interesting'....

Darth... Moderator...

[cassandra]

Welcome to the site hootie

     

Take care, Cas

[Hootie]

Thanks...An update on caregiver relief....Dr and Nurse could not help me find a caregiver to help while I went out of town. My wife asked the Dr if she could just take lasix during my four days away and the start back up with treatments when I returned. She reluctantly said we could and that is what we did. Did treatment on Friday am and resumed on Wednesday am. Wife did fine while I was gone, but needed a big treatment while I got back. Also, we are doing 4-5 straight days to catch back up. UF has been heavier the last three days.  Everything worked out. Probably not the best thing to do but it worked for us.

[PrimeTimer]

Thanks...An update on caregiver relief....Dr and Nurse could not help me find a caregiver to help while I went out of town. My wife asked the Dr if she could just take lasix during my four days away and the start back up with treatments when I returned. She reluctantly said we could and that is what we did. Did treatment on Friday am and resumed on Wednesday am. Wife did fine while I was gone, but needed a big treatment while I got back. Also, we are doing 4-5 straight days to catch back up. UF has been heavier the last three days.  Everything worked out. Probably not the best thing to do but it worked for us.

Glad it worked out for you. Yup, I imagine the UF might be heavier...my husband will be away for 5 days. He'll be getting an in-center treatment on Day 3 while away and we will resume home hemo on Day 5 when he arrives back home. I am going to have our NxStage primed and ready to go. Since our normal routine consists of HHD 5x weekly, my biggest concerns are: is he going to feel sickly, fluid gain raising his blood pressure and how his fistula is going to react to not being used as often while he's been away. On one hand, I dread the day he gets home because I fear he won't feel too well and have a lot of fluid overload but on the other, it will be a relief to get him "emptied and cleaned out" again.   

[Simon Dog]

When my wife leaves town for business, I don't have any trouble booking in-center.   Once when all the chairs were full, they let me use the NxStage they keep at the clinic for training purposes.

If the clinic would let me, I would just do the treatment alone, keeping a door to the house unlocked and a phone handy in case I needed 911.   But, I play by their rules since that's part of the deal in getting home treatment.

[Hootie]

My wife had option to go to center but really did not want to go. They seemed to an adequate job but the three doing the work speak very little english. They also speak very little to patients. All business. One time they let her drive home when they should have waited due to low BP.

She was okay when she had to go but now likes her current caregiver better. He is gentle and supportive.

Another update...my wife was approved for transplant at Emory and is officially on the list. I will be tested shortly to enter the paired donor program since our blood types not not compatible. 

[PrimeTimer]

My wife had option to go to center but really did not want to go. They seemed to an adequate job but the three doing the work speak very little english. They also speak very little to patients. All business. One time they let her drive home when they should have waited due to low BP.

She was okay when she had to go but now likes her current caregiver better. He is gentle and supportive.

Another update...my wife was approved for transplant at Emory and is officially on the list. I will be tested shortly to enter the paired donor program since our blood types not not compatible. 

Congrats on her being approved at Emory! Mighty generous of you to agree to the paired donor program, good luck and best wishes!   

[kristina]

My wife had option to go to center but really did not want to go. They seemed to an adequate job but the three doing the work speak very little english. They also speak very little to patients. All business. One time they let her drive home when they should have waited due to low BP.

She was okay when she had to go but now likes her current caregiver better. He is gentle and supportive.

Another update...my wife was approved for transplant at Emory and is officially on the list. I will be tested shortly to enter the paired donor program since our blood types not not compatible. 

Hallo Hootie,
My husband and I are also going through the "paired and pooled" donor programme because our bloodtypes are not compatible.
Please let us know how things are moving forward and we wish you all the best.
... Have you already "found" your other "paired donor" ?
Is your "paired and pooled" request also being put on a computer-programme
and this computer-programme is "clicked" four times a year for the "paired and pooled" programme?
How long have you been waiting for the "paired and pooled" ?
All the best wishes and thanks from Kristina.

[Hootie]

Kristina, just had the first interview for the paired program for me to be evaluated last week. I passed first step and now get the 24 hour urine test and blood work as second step. If I pass that then I go in for the big tests. Emory says they have only one paired/transplant donor candidate who has been on the list longer that a year. Usually its just months after passing all the tests to get paired up. They said they fly the living kidney to the sites as needed. That indicates that the matches could be outside the immediate area. My wife is O so that is a little less common. We will see what happens.  I need to do some research on the ideas and questions you mentioned. All the best to you! 

[Bambino_Bear]

  Hootie!

I am so happy for you and your wife and wish you the very best on your transplant journey.