Is a partner REALLY necessary?

[MooseMom]

I know it is possible for people to do NxStage alone; several people on IHD do/have done.  I've been thinking about this for some time now, and I really do not want to have to get my husband involved in all of this.  I'd so much rather just do it by myself.  I don't want him to train with me, I don't want him to have anything to do with my dialysis at all, ever.  So far I've been able to keep him out of it, and after seven years of this pre-dialysis crap, the most I've asked of him is to give me a ride to some of my more physically gruelling tests and to give me a ride into Chicago for my pre-transplant stuff.  So, is there any way at all that I can convince my clinic, when the time comes, to train just me?  I don't want a "caregiver".  I don't want to be beholden to anyone; I just want to be left alone to get on with it, but I'm not sure the clinic will let me.  Any ideas/thoughts?  Thanks.

[cariad]

I get where you are coming from, MM. I was exactly the same. If it were transplant, I would say just ignore their orders to bring a support person along - that's what I always did - but this is quite different.

Two things spring instantly to mind: 1. Are you up for this fight? Read Anna's story (Meinuk), it sounds like it took a load of energy, and since you are married and your husband is right there, it could come off as you just being contrary for the sake of contrariness. (I have had that one leveled at me and it is not flattering to hear.) 2. How does your husband feel about this? Look, it sounds bonkers on the surface, but there are people who actually want to be involved. Not knowing a thing about your husband, I cannot say what my suspicions are with him. Gwyn, more often than not, wants to be involved in these things. No, I did not take him to evals, nor did I end up letting him inject me with Aranesp, though my nephrologist wanted to teach him how. (Gwyn and I can have a volatile relationship - it probably would not have been a great idea to get us both in a room and then arm only one of us. ) However, I think I let him in on enough of the process that he at least knew most of the things that were going on with my health. He was an angel through the viral meningitis, cutting through red tape like a madman, phoning the physician-only line to demand to talk to people. It's amazing how people can rise (or fall) to a situation.

NxStage is a major commitment and I think being shut out of something that huge, and as you've said yourself, life-altering, would be poison to a marriage. Think of how you would want to be treated if your roles were reversed. I can think of at least one time where Gwyn was going through some major trauma and we had to go to Wales. He and his brothers spent the whole week talking in Welsh, when it came down to big moments, Gwyn would want his brother at his side, not me. I had to make up reasons to leave the room (carried a lot of coffee that week) because I just felt so unwanted and unwelcome. It was very early in our marriage, and so bizarre that it took years for me to get over the idea that he would look to his brothers in a crisis and not even speak a mutually intelligible language to me. I am about as squeamish as they come, but I would be insulted if Gwyn needed dialysis and did not even want me to attend the education that would make me feel reasonably competent to handle a crisis in the unlikely event that it happened. I am not sure I would stick around for that scenario, but every marriage is so very different, so perhaps this is exactly what would work for you and yours.

Good luck whatever you decide.

[MooseMom]

I've been having tests and appointments on a regular basis for 7 years now, and I have been very vocal about how unnerving all of this has been, yet my husband has never volunteered to accompany me, nor have I expected him to.  He works long hours at a very demanding job, plus he teaches one or two nights a week.  So, he gets on with what he has to do in life and I do what I have to do.  His coping mechanism is mainly one of denial; if he doesn't have to think about a problem, then it doesn't exist.  This is not a criticism of my husband; he would tell you the same.  I, obviously, am very different.  If our roles were reversed, I would react very differently from how my husband would react because we are fundamentally wired so differently, so asking myself what would happen if he were in my shoes is largely irrelevant.

My husband says he will do whatever I need him to do, but again, this is a man who probably doesn't really understand the ramifications of ESRD because he doesn't want to know.  Forcing him to train with me will mean that he will no longer be able to deny how things are.  It's not a matter of being contrary or wanting to shut him out, rather, it is a matter of even greater selfishness; it is a matter of me not wanting to have to think about him and how he is coping because I can assure you he will will be completely and totally unprepared for the onslaught that is dialysis.

My husband's boss is a mercurial person, and I do not trust him to allow my husband to leave work on time so that he can train with me/help me once I come home with NxStage.  I don't think I should be manipulated into a position where I cannot get the best treatment just because my husband's boss is in a bad mood and decides to keep everyone late at the office.  This has happened before, and I am not going to let it happen again.  The easiest way to protect myself is to do NxStage alone.  It's a matter of self-preservation, really.

Frankly, I think my husband would be relieved to be spared from my dialysis.  I think most men would, frankly. 

[MooseMom]

OK, nevermind.  I just had another discussion with him about this, and he has said that in a weird way, he will welcome the opportunity to help me out.  I can understand this because he must feel very helpless and frustrated that he's been unable to help.

I just needed some reassurance.  I've been feeling very anxious lately.

[monrein]

Here's my 2 cents worth.  Get him to be designated your partner (different than caregiver, words do matter) for Nxstage, do the training and then let him get back to being as uninvolved as possible in the day-to-day operation of things.  He'll know more about what you do and what's necessary but you can be in charge and stay as independent as possible. 

You know, i'm really looking forward to being able to chat in person in Vegas...only 2 days away...I'm a lousy typist. 

[cattlekid]

I agree with this 110%.  I met with the staff on Friday at the clinic to which I will be transferring to do my NxStage training.  They asked if I had a partner at home.  I told them that my husband will be coming to training ONLY to learn what to do in case of emergencies.  I will be in charge of all other aspects of my training and subsequent runs at home. 

This actually made the clinic staff happy.  They indicated that in most situations, they want the patient to be in charge and the care partner is only there for emergencies and the like.

My husband is very squeamish when it comes to needles so if I asked him to stick me, he'd faint anyhow.   

Here's my 2 cents worth.  Get him to be designated your partner (different than caregiver, words do matter) for Nxstage, do the training and then let him get back to being as uninvolved as possible in the day-to-day operation of things.  He'll know more about what you do and what's necessary but you can be in charge and stay as independent as possible. 

You know, i'm really looking forward to being able to chat in person in Vegas...only 2 days away...I'm a lousy typist. 

[Dannyboy]

Hey MM,
As you may recall I'm going through NxStage training currently (with my wife).   Yeah, there is a lot for the 'caregiver' and patient to learn and do, no question about it.   IMHO the caregiver better have some motivation to do it, because there will be plenty of opportunities/frustrations with the learning curve to say 'to heck with this'.   Probably not a situation to drag a potential caregiver 'kicking and screaming' into training with you, but that doesn't sound like what your dealing with.


Bill Peckham and others are doing NxStage solo, problem is getting into a situation where you can do it all by yourself.  Like Monrein explained, get into the home program first (with a caregiver), then focus on reducing caregiver involvement. 


---Dan

[MooseMom]

Yes, I agree with all of you.  Thanks for the advice!

[Adam_W]

Here's my 2 cents worth.  Get him to be designated your partner (different than caregiver, words do matter) for Nxstage, do the training and then let him get back to being as uninvolved as possible in the day-to-day operation of things.  He'll know more about what you do and what's necessary but you can be in charge and stay as independent as possible. 

You know, i'm really looking forward to being able to chat in person in Vegas...only 2 days away...I'm a lousy typist. 

That's exactly what I did. My dad went through training with me, but never really was involved that much. He never really felt comfortable dialyzing me, and I always preferred to do it myself. I've been doing it solo for 4 1/2 years, including handling some serious emergencies myself.

[jbeany]

My then-husband was my partner.  His requirements for the training sessions were pretty minimal.  He came to two or three of them is all.  It is good to have someone with some familiarity with system.  It doesn't even have to be a big emergency for you to need help temporarily.  (Think sprained wrist!)  Having him willing to be there, but not really needed is the best option.  I was not very successful at self-sticking - too much scar tissue around my graft.  I tended to do the entire set up, including the inventory, the stacking and organizing deliveries, the reporting of stats, and making the dialysate.  On dialysis days, I would call him in only to cannulate me and connect lines.  Once that was done, he took off again, only returning to help with needle pulling at the end.

We used a small set of walkie talkies.  They had a span of over half a block.  He could be at the neighbor's house or down at the corner store and still be easily reachable in an emergency.

I also trained my mother-in-law.  She never would try the needle sticking, but once that was done, she could handle the rest of what he did.  It's nice to have a 3rd person - it keeps you from having to rely on 1 all the time.

[ESRD Survivor]

I hope I am not stepping on toes here, but I could not handle this disease without my husband.  I guess because he knew I had kidney disease before we were married and I stared PD one month after we were married.  If he can he goes with me to dr appointments, any kind of tests, and 11 surgeries in 8 months.  He plans to go to my first two weeks of Nxstage training and then since he has Mondays off he will be there as well.  Without him I would not feel comfortable doing Nxstage at home.

[Bill Peckham]

OK, nevermind.  I just had another discussion with him about this, and he has said that in a weird way, he will welcome the opportunity to help me out.  I can understand this because he must feel very helpless and frustrated that he's been unable to help.

I just needed some reassurance.  I've been feeling very anxious lately.

I get that too - I think in general you're better off taking full control of the day to day but I can see him thinking of this as an efficient way to get up to speed on this whole dialysis thing. I totally get that.


EDITED TO ADD: I just marked 10 years at home last month; nine years as a lone dialyzor.

[tyefly]

I was required to have a care partner ( on paper so to speak )  I took my 26 year old daughter.... she came in the first day and three days during the three weeks...she learned how to give me emergency saline if I needed it..other than that she sat there and watch me do everything..... I had to tell everyone that I did have a partner and that she would be there ....  they were happy with that....  she does not live with me.... and when I went home I did every thing myself.....  I had no problems.... at all   I think I called Nxstage once....  and never called the clinic at all during the whole time I was On nxstage.... I received more support here like from Bill Peckham and a few other than anywhere else.... like resetting the alarms so then didn't go off in the middle of the night.... even when I was doing short daily I had no problems...

I did everything and my hubby doesn't know anything about the machine...he is often away on business anyway....  I don't even know what a care partner would do... 

I would be prepared to train with someone and assign that title to a person...but  I would do everything my self and I am sure that is what you will do anyway.... why pull people in to do half the job... I can understand why some others would want a care partner if one person can not do some of the things that are needed to be done...but for me  I am one of those kind of people who likes to do it all by myself......LOL  some say I am too in dependant...... stubborn or what ever....  Ok   I am ....   I have never brought anyone with me to any of the clinic visits..... sometimes they ask me where my care partner is today  and I say I gave them the day off....LOL

[MooseMom]

jbeany, I've thought about the walkie talkie idea, or a baby monitor.  I'd like to eventually do nocturnal, but our bedroom really isn't conducive to that set up, but our basement is perfect.  I'm thinking about replacing the couch with a single bed, and there's everything I need down there.  Hubby can sit with me watching TV until he wants to go upstairs and go to bed.  If I need something, I can yell into the baby monitor.

esrd, no, you're not stepping on any toes.  My husband has been with me through my various surgeries, but I guess I've gotten so used to attending the neph appts alone that I suspect he might get in my way.   He went with me when I was first given the news about how bad my kidneys were, and he asked all the wrong questions.  He's a very smart man, but I can tell he would make a terrible patient.  But I am thinking that he will adjust to NxStage; he has confidence in himself, so I will take his lead on that.  I'm sure everything will be OK.  It's just me getting into a bit of a tiswas.

Bill, good for you.  You are the inspiration for so many of us here, and I'd like to take the opportunity right now to thank you.

[JohnJ]

My wife went through the training from day one. I do the stick and she tapes me down. Then she's gone until it's time to pull the needles. She pulls although I have practiced pulling my own needles.

The best part about having my wife is that....(ok..those who are wickedly religious stop reading now).. at the clinic I couldn't have a topless nurse. At home I can 

[ToddB0130]

I found out today from a d-center that I'm considering that they are funded for NxStage home hemo.  She did say a partner is required (as if something goes wrong with in center dialysis,  there is someone there to assist in resolving the problem) ....... at the same time,  I *know* there are people on this board who say the DO do it alone.

So my question --- I think I can get a support person to train with me,  but I do live alone and don't believe they'd be able to stay 6 days a week during my entire treatments.   Here's the question for all of you who do this (partnered or not) .... Out of six weekly treatments,  how often does an 'emergency' crop up that the individual on dialysis cannot handle.

I certainly don't want to do myself damage by trying to do this alone.    Also - what are those 'emergencies specifically ??

Thanks for the information !!!

[JohnJ]

The question isn't "how often".
The PROBLEM is if it happens once you can die very quickly.

[Meinuk]

The question isn't "how often".
The PROBLEM is if it happens once you can die very quickly.

I have written about this so much that I am "almost" sick of writing it.

It is a question of informed consent.  If a person is alone, and they want to do their own dialysis (and are able) they should be allowed to do it.

Alone I can drive a car, alone I can operate a chain saw, alone I can sail a boat, alone I can swim in the ocean, and alone I can walk the streets of Moscow.  I know all of the risks involved.  They are my choice.  To deny someone the chance to have a better life because "it could be dangerous" well, that is simply wrong. Doing dialysis is assumed risk.  I was ok with that, I did it for a year and I would do it again in a heartbeat  - even if that heartbeat could be my last, it would be ME giving MYSELF the best possible care. Who else has MY best interest in mind?  The staff that gave 9 people in my old unit Hep C? - oh yeah, they cared - just not enough to wash their hands or the chairs after treatment....

A care partner is an amazing thing, but if you don't have one, why should you be treated as if you can't take care of yourself if able?

Every person is individual.  every case is unique.  To make blanket statements to protect us from ourselves is condescending at best, and deadly at worst.

John, this is not directed at you - it is just the sentiment that set me off, and I get that you were just trying to be concerned, but we as people need to put on our big kids pants and take care of ourselves.  Life is a risk.  Let us decided if it is worth taking. To me the risk is well worth it.

We've had this discussion before:  http://ihatedialysis.com/forum/index.php?topic=19406.msg349021#msg349021

[justme15]

moose mom- you and your husband remind me so much of me and my husband!! My husband is also in denial about my situation. he thinks i'm moody and tired all the time now? he has no clue what things will be like once I start dialysis!! It wasn't until I made him accompany me to a nephrology appt that he realized that I have problems, I'm sick, and I need a transplant..soon.
i think he will help me if I ask, but like you, I really would like to do everything I can on my own. he is very squeamish. and if he realized the seriousness of dialysis, I think he may not handle it well.

[Bill Peckham]

I second everything Anna said. Just one question:


Do my big boy pants make my butt look big?

[Meinuk]

Do my big boy pants make my butt look big?

They're perfect.   

[JohnJ]

The question isn't "how often".
The PROBLEM is if it happens once you can die very quickly.

John, this is not directed at you - it is just the sentiment that set me off, and I get that you were just trying to be concerned, but we as people need to put on our big kids pants and take care of ourselves.  Life is a risk.  Let us decided if it is worth taking. To me the risk is well worth it.

We've had this discussion before:  http://ihatedialysis.com/forum/index.php?topic=19406.msg349021#msg349021

If someone dies during a treatment it reflects on the treatment. That's just a statistical fact that's part of the medical record community. How do I know? I worked in hospitals for 9 years and my wife has worked in medical records (Health Information Service) for 26 years. The chart will reflect that the patient died WHILE IN TREATMENT and that's all some republican senator needs to cut funding for the program. You CAN'T look at this as a personal thing. You MUST look at the whole picture to understand the ramifications.
But I know I won't change your myopic view of the topic. We'll just have to agree to disagree.

[Meinuk]

Oh John, we will always disagree.

And as far as your experience and world views go, thank you for sharing.  It is great that you have the internet to voice your opinion.

As for me, my world view and my "myopia", I am not too worried about my position in the food chain or my opinion being heard - it is out there and will be for as long as I can voice it.

In my myopic view, your fear is crippling you, your paternalistic attitude is archaic and until you open up your eyes and trust that people actually can take care of themselves with informed consent and assumed risk - your world will continue to become smaller and more regualted -  slowly choking people off until everyone will be at the hands of for-profit technicians.

I am sorry that you feel that I and others like me are "unable" to take care of ourselves. 

And these statistics that you quote?  Let's be real, home dialysis is an outlier at BEST in the statistics of CMS deaths (that would be CMS Death form that you are trying to scare me into submission with - the deaths aren't tracked on a national basis via individual hospitals.  CMS compiles its own data via the ESRD Program with a hat tip to DOPPS).  Solo home dialysis will ALWAYS be an outlier to an outlier in any statistical report - doesn't our government have bigger fish to fry with our current mortality rate?  I am thinking that you would HATE to be Australian, with their large population of people performing solo home hemodialysis and terrific overall survival rates.

I'm not worried about your fear of a few spoiling it for the rest. If someone is able to do solo home hemo dialysis, it should be available to them.

And as for my myopic view,  I am working daily to make the provision of dialysis better for everyone - not just those that are lucky enough to have a care partner.

[ToddB0130]

Sooooooooooo ..........I was reading another thread and was struck with a thought (which generates additional questions .... SORRY)

For NxStage home hemo ..........is there any practicality in TWO dialysis patients doing their home hemo in the SAME location at the same time ?

My thought was - as a single person living alone,  perhaps while I start in center (which I want to do for the initial support of starting this whole process) ..... I might meet up with someone else who lives alone and we can be each others partner and do our home hemo together.

I read online here that the NxStage is very portable and all,  but I don't know what other types of hook ups, etc are needed and whether one location can support two people doing home hemo at the same time.

Also,  from reading here  it seems that home hemo is 6 days a week, 3 1/2 hours each treatment .... I'm not sure how much additional time the set up and breakdown take.

Soooooooooooo ............ 6 days a week,  say 5 hours a day ................hmmmmm,  it would have to be with someone you REALLY like !  Quite a commitment.

Thoughts ??  Is this a possibility for someone who lives alone to pursue.  Would a center support two patients wanting to be each others 'partner' ??

Trying to 'think outside the box here' since I'm not yet as brave as Meinuk and the other solo home hemo users.

[willowtreewren]

Todd, this is a bit off topic, but I did hear about 2 sisters who were each others' NxStage partners.

Aleta