Can someone talk me down?

[MooseMom]

I've already pretty much made the decision to do NxStage.  My husband is willing to train with me, and my neph agrees this would be a good modality for me.  I've got the brochures from the company and I have read lots of posts about people training and experiencing NxStage.  But this is one of those situations where the more I learn, the more I see I have to learn, and at this moment I'm feeling a bit overwhelmed by what the future holds.  I would be grateful if anyone out there could offer a small word of encouragement. 

Thank you.

PS...there's something else I'd like to discuss.  It's kinda personal.  We have a large, walkout finished basement that would be ideal for a home dialysis set up.  We have a nice big family room all kitted out with a fridge, TV, playstation, computer...just about everything we'd need.  I've just had our laundry room redone with a view to using it as a good space to keep supplies, and it has a water source and a big double sink.  But the more I think about it, the more I am leaning toward doing nocturnal on NxStage, but I really don't think that our bedroom would be suitable.  We have so much more room downstairs.  So, does anyone here do nocturnal but not in bed with their spouse?  I'd like to do nocturnal home hemo but not in our bedroom...there, that's the bottom line.  Anyone have any thoughts?  I haven't discussed this with my husband as I've just now considered it and he's already in bed asleep.  I know he wouldn't like it especially, but I also know that he wants me to do what is best for me and my health, so I don't think he would really fight me on it.  He's the one who seems to believe that I will be getting a kidney transplant way before the 3-5 year projected time frame, and whenever I start complaining about having to go on dialysis at all, he tells me that it will be "only temporary", so maybe I should just tell him that me not sleeping in our bed anymore would be "only temporary."

PS, I could probably buy a single bed and mattress for less money than I could buy the chair I had my eye on for dialysis.


Moderators:  If you want to more and/or copy this thread to the "Nocturnal" forum, please feel free to do so.

Thanks again, everyone.
Anyway,

[rsudock]

oh Moosemama I get worried about you, getting yourself overwhelmed so much. I know you are worried but really everything will be fine. You are so brave and  have armed youself with so much knowledge. I think it is the fear of what is to come and you don't really know what to expect that scares you. take a breath....you can and will get through this D crap. Plus if you are going to be doing nocturnal your labs will be great and maybe you won't have to be as strict on the renal diet!

the bed thing...buy another queen/king size bed and take hubs down to the basement with you!!! That way you both can be together and you will have someone their in case of an emergency. I hate to think of you in the basement all by yourself! But it sounds like you have a pretty nice setup down there!

Always believing in you!
xo,
R

[MooseMom]

I'm not really any braver than anyone else, but it is true that I have armed myself with a lot of knowledge, still very much aware that I have a lot to still learn.  I do know that I get waaaay ahead of myself and start thinking of things that may not come to pass for some time, but for me, planning is a coping mechanism that works for me.  I wish I could be the sort of person who just goes with the flow, but alas, I am not.  I find comfort in doing my research and having a battle strategy at the ready when I need it.  It 's a matter of degree.  I must find that happy medium between getting overwhelmed and getting ready.

I think I am reasonably flexible.  I may moan and groan, but I have done the pills and the diet and the appts and the evaluations and the tests and the labs and the procedures and the paperwork and the phone calls and the record keeping and the little things that one needs to do when faced with a big health issue that won't ever go away.  CKD has affected my life in ways that I've never discussed on IHD, but despite my anxieties and fears, I have never...not once...refused to do anything necessary because I was terrified.  I am be frightened, but I am not inert.

I have turned my life upside down to find what I think will be the best treatment for me.  But I will not have my dialysis machine complete with tubes and drains in my bedroom.  That's my line in the sand mainly because I feel it will impact my husband.  So far, I have been able to handle all of this by myself.

I've thought about me being downstairs alone while dialyzing nocturnally, but I thought about getting one of those baby intercom systems.  If I need my husband, I can yell at him through a baby monitor!

[rsudock]

That baby monitor is a great idea... I see now how you don't want D to invade your bedroom. Since D impacts so many aspects of our lives. I think it is great you are so proactive about your health. too many people take it for granted.

xo,
R

[jbeany]

Does your center support nocturnal on NxStage?  Not all of them offer that option, so you might want to check into that before you get too far ahead of yourself.

Get a $25 set of mini, recharging walkie-talkies.  Then hubs can talk back to you, too.  Plus, they have a lot greater range.  When I was on NxStage, my partner could be out in the yard, even at the house next door, and still have communication with me. 

Learning NxStage does involve a lot of information, but you learn it in steps, not all at once.  It's like learning to drive a car.  You are nervous at first, but it becomes routine and you drop in the seat and motor off without thinking through all the steps.  You will get there - and they give you a check list to follow until you are comfortable with it all.  You can do it!

[Desert Dancer]

Hi, MooseMom -

You can do this. It's not like they're going to throw you to the lions and expect you to be doing everything perfectly by the end of week one. You'll have a training team right there with you every step of the way, and likely a step-by-step checklist to refer to while you're doing it. And the machine will definitely let you know if you've forgotten a step or done something out of sequence!

There's really nothing like the feeling of competence you gain as you go. First everything feels like a major accomplishment, then it all becomes routine, then you start feeling like a pro. As the weeks go by and you get fewer and fewer alarms - and everything starts humming along without a glitch - your confidence will grow and that, in return, will feed your sense of competence.

PS: Just out of curiousity, when did NXstage get approved for nocturnal use? I don't have any interest in NXstage because of the high blood flow rates, but my team told me I had to train on the Baby K because NXstage wasn't set up or approved for nocturnal yet.

[boswife]

boy Moosemom, we need to talk...lol............. But actually, im the last one to 'talk ya down' cause we're WAY too much alike   Yea!  we both seem to over think things to an uncomfortable point.  I will add here that i have my own 'issues' that i wont go into here, but they get the best of me and i can spend WAY to much time, well actually ALL my time figuring whats best, how to do best, how to do things RIGHT, bla bla bla bla bla. Once im focused, im REALLY focussed.   I know though too, that we need to do this because who else will do it as well as we can.  I was up from 1-3 am this morning canulating my hubby this way and that way and over and over and over................but only in my crazy mixed up head. Its sad because  I was so full of confidence after accomplishing it, but my danged 'issue' has me all unsure of myself again.  Then, i read our lovely looneys post and i was full of confidence once again... Then down again today.... then hubby said,  "you only have to think of one thing, YOUR saving me,". What bugs to me is, im over my fears of doing it, now my fears are CAN i do it right..  Ok, moosemom, who needs talking down now?  lol  Have i forgotton whos post this is or what!! dang!!  So, anyway, i too am thinking about nocturnal if it comes available, but for now, im glad to do daily so i can keep a good eye on him until this too becomes common to us.  We also have gone through the 'where' of it.  Oddly enough, we have a great spare room that would set up nicely, but i think we're going to be fixen him up right in our front room where he likes to spend his time.  Unless they say otherwise (theyre comming tuesday to give us ideas)  we're pretty settled on that.  Nocturnal would be in our room..  45years together, we aint about to be seperated now  AND, i'd be afraid (once again ) to not be close incase of alarm or what ever..  Soooooo, bet i REALLY calmed ya down on this huh.. Oh, and i too feel the more i learn the more i need to , BUT!!! the more we learn the sharper our brains are to learn someore    Hugs moosemom,,, hope your feeling well today    Ps... Desert Dancer's post just poped in befor mine.... GREAT advice Dance :-)  I think i'll take it myself

[Bill Peckham]

re: feeling overwhelmed

I think of it like driving a car. If you had never driven before and then spent time on a forum where people talked about their experiences driving it would feel just as over whelming. Think of all the things that can go wrong just driving to the local store, and how many things you are actually keeping track of - is there enough fuel, keep checking the mirrors, keep the speed limit, watch for pedestrians and other drivers ... imagine if you tried to write out a description of what is involved in driving and covered all the possible things that could happen, it would look impossibly complicated; you might decide to take a bus.

Doing dialysis at home is a bit like that in that there is a lot going on at once but you learn to handle the situations and it becomes second nature.

Where to dialyze and on what schedule - assuming you have all options - isn't something you have to commit to right now. Over time time you can try out different arrangements to see which one is the best fit. Over time you'll likely be on different machines and different schedules, cross the nocturnal bridge when you get to it

[vcarmody]

I don't think anyone can put it any better then Bill just did.   

[MooseMom]

As usual, you are all right.

It is my understanding that NxStage has been approved for nocturnal...if not, I know there are people who use it for this purpose, anyway.  If I do nocturnal but it is impossible to do it on NxStage, that's fair enough.  No, my clinic doesn't support in-center nocturnal...I don't know about home nocturnal.  What kind of "support" does one need for nocturnal dialysis at home?  Is it that different from short daily home hemo?  If they don't support it now, maybe if I ask nicely, they'll accomodate me.  Who knows?  I could call and ask, but they'd probably think I'm a real headcase, which I just may be.

Bill's point is important...I don't have to make any concrete decision right now.  I just want to do what is best for my health, and I had never seriously considered nocturnal.  I have been a bit inflexible in my thinking, and all of a sudden it occurred to me that maybe I should at least think about nocturnal.  And then my brain switched into hyperdrive and I found myself awake at 4AM mentally moving furniture around in the basement. 

New plan...stop thinking.  There's nothing more that I can possibly do for myself right now, so just relax (yeah, like that's gonna happen.)

Thanks everyone for your responses.

[Bruno]

Moosemum, I've already replied to another enquiry you had, but I must answer this one as well. I had exactly the same scenario as you (as I've described to you elsewhere) and installed the Fresenius in our bedroom. I sleep with my wife as I have now for many years. My advice to you after actually experiencing it, is...don't do it unless you share single beds, or better still, install it in a separate room. I figure it's one thing to expect your partner's support, it's another to deny them their sleep. Home dialysis is very intrusive in that it takes up a lot of personal space, far more than I envisaged back when i was training and thinking about.
Now, your situation at home might be different to mine, but me and my girl have been married 51 years and she needs a good nights sleep as much as I do.
Another thing for you to consider and I only mention this because I know how thorough you are once you get started is insomnia...little mentioned but a disorder that often accompanies dialysis and kidney failure.
I had one stage there where I slept the night I was on dialysis during the day and stayed awake the next one. Not something you want to inflict on your loved one.

[MooseMom]

DesertDancer, I don't think NxStage has been FDA-approved for nocturnal just yet, but it does seem that there are some home hemo dialyzors who use it that way, anyway.  I don't think at this stage I am knowledgable enough to do the same, but perhaps by the time I do start D, NxStage will have said approval.  I prefer having a very clear idea of what I am going to receive dialysis, but I guess I will just have to accept the fact that there are mitigating factors over which I have no control.

I did a search for all of the D clinics within 20 miles of my home, and I can't find ANY clinic that offers nocturnal, either in-clinic or at home.  I don't have another neph's appt until next month, so I will start asking these types of questions.

Bruno, thanks for your thoughts about how intrusive nocturnal (or even NxStage) can be for a spouse.  Believe me, I think about this a lot.  And I do have problems with insomnia; I take a sleeping pill at night.

[lola]

M&M the only advice I can give you is take a deep breath and try to relax. One thing that I have learned is to take one day at a time, I think it is good to be informed but I feel so bad about how stressed you are. Everyday brings something diffrent in the wonderful world  of dialysis I worry you are stressing yourself out and that is not good for you. Otto at the moment is feeling the BEST he has felt in 2 years but I'm sure something at some point will pop up but I take each day as another blessing, and try not to stress to much about the "what if's".... Please don't think I'm being rude I just am very worried over how stressed out you are all this...

[MooseMom]

lola, that's so nice of you, but do not worry about me.  I know I come across as horribly stressed, and often that is how I do feel, but thinking about all of this stuff NOW is how I protect myself from being sandbagged.  This is my coping mechanism...trying to control the uncontrollable.  I know it's impossible, but trying to assert as much control over things as practicable helps me to process things.  Doesn't always work, though!

[silverhead]

When we looked into Nocturnal (which Sharon decided not to do after all), we were told that NxStage was not approved, but the work-around for that is that they could offer "extended" treatments, which is the same thing........

[MooseMom]

When we looked into Nocturnal (which Sharon decided not to do after all), we were told that NxStage was not approved, but the work-around for that is that they could offer "extended" treatments, which is the same thing........

Yes, that's essentially what we've been told.