Is this the real deal

[kyshiag]

Hi all,

I may have mistakenly assumed that nocturnal was a selectable option where you would dialyze overnight from 9p-5a.  However, after talking with one of the centers, its appears that this longer dialysis is for some select group and, further, they keep odd hours like 5p-2a.  The social worker said that they only took patients who were mandated to have more dialysis and that this would probably not be the selected option for people just starting because they need less dialysis.  I'm in Chicago.  Is this how it really is.  I'm confident my husbands nephrologist would sign-off on just about anything but is 8 hours vs 4 hours a prescription instead of an option?  And who on God's green earth would want to leave a dialysis center woozy at 2am?

[MooseMom]

It is really hard to comment on individual clinics.  The issue isn't how much or how little dialysis is needed, rather, it is a staffing issue.  That's the sticking point. 

The best dialysis is going to be treatment that results in you/hubby not having to take binders or bp meds, that will restore good health and will enable the patient to return to work or to whatever else s/he was doing before dialysis.  But here in the US, we find we have to fit in to someone else's schedule.

That people just starting out on dialysis don't need "as much" dialysis as another type of patient is news to me.  It is true that those just starting out may run slower so that their bodies can get used to dialysis, but that's not reflective of "need".

Is in home nocturnal a viable alternative for you?

[kyshiag]

I'll be honest, I'd like to have someone more skilled than I in charge of my husband's care--at least initially.  We have absolutely no idea what to expect so putting us in charge would be like asking a toddler to care for himself.  I work regular but long shifts so my husband would essentially be on his own--not good.

[kellyt]

Back before I transplanted my doctor recommended I do nocturnal.  He said the longer time gave better clearance or something like that and he said I'd feel better.  I don't know what the times were, though.

[tyefly]

I'll be honest, I'd like to have someone more skilled than I in charge of my husband's care--at least initially.  We have absolutely no idea what to expect so putting us in charge would be like asking a toddler to care for himself.  I work regular but long shifts so my husband would essentially be on his own--not good.

Isnt your husbund responsible.....  Why wont he learn to take care of him self......there are many of us who do all the caring and do all the things it takes to do dialysis at home...... its really pretty easy once you get the newness over..... 
I bet if you ask him  or encouraged him he would want to do it himself...... 

[kyshiag]

He's responsible, he's just not a medical professional.  I never said home nocturnal was off the table; just off the table initially.  I don't think anyone would volunteer to deliver their first baby...and there is the mentally getting your mind around it, too.

I've never heard dialysis referred to as easy.

[tyefly]

Dialysis is easy.... its easy to set up ...   for some sticking needles can be hard to overcome...but it can be done....  The treatment feel is alot better at home than in center.....  You dont have to be a medical wizard to learn how and what to do..... its like anything new   we just take the time to learn  and practice and then its just routine....  I was overwhelmed at first now...... seriously.....  go slow and learn all you can.....its better to do everything your self  and know it well.... no one can take better care of you than   you...... you know what hurts ....how it feels  ... and most of all....how to make it better.....Solving problems is what we all do anyway all day no matter if its work   or   play.....Dialysis is neither......  its just necessary......

[MooseMom]

He's responsible, he's just not a medical professional.  I never said home nocturnal was off the table; just off the table initially.  I don't think anyone would volunteer to deliver their first baby...and there is the mentally getting your mind around it, too.

I've never heard dialysis referred to as easy.

If you and your husband are interested in doing home dialysis, you would be very thoroughly trained before they let you go home with a machine!  It is a whole different skill set, and that makes it less than easy unless you happen to be a doctor, but ordinary laypeople learn to do both hemo and PD at home.  But no, no one is suggesting you just waltz by Walmart, pick up a dialysis machine and some needles and start in on it.  The initial stages of dialysis are not easy because everyone is searching for just the right prescription and modality for the patient.

Most if not all clinics would require your husband to train with a partner (that would be you, I'd suppose), but the idea really is to have the dialyzor do as much for him/herself as possible.  Nocturnal just is not offered in many clinics at all, so if that's the modality you want, it will probably have to be at home.  Some IHD members do extended home hemo with NxStage.  But I would suggest telling your husband's neph what it is that you both want, and let the neph assess the situation and work with you.

[Desert Dancer]

Hi, kyshiag -

If nocturnal dialysis is what you want, then you have every right to ask for it and get it. You may have to find another clinic - or you may have to go home - but somewhere in Chicago there must be a clinic that supports nocturnal dialysis and won't put you off with lame excuses. Longer, slower dialysis is better, period - this point is not debatable. I'd suggest you lay out the facts to your nephrologist and ask for a nocturnal prescription. If s/he won't do it, find one who will.  I guarantee you the outcomes make it worth the fight.

As far as newer patients needing 'less dialysis'... it's mostly a crock of sh*t. Yes, they may initially start you off on a few half-sessions to get your body acclimated to it, but that's just for the first few days. I had my first dialysis treatments in the hospital and they were half-sessions, but by the time the week was up and I was discharged to a center I was doing regular 4-hour treatments.

Don't be too anxious about taking your husband's treatments home; they won't send you home until you are thoroughly trained and can demonstrate proficiency. My training was hands-on from day one, and lasted for six weeks (five days a week). My husband only had to come in 3 or 4 times, because all he really needed to know was how to put me on, take me off, and deal with emergencies. We've been home since November 9th and it has now become downright routine - I could probably do it in my sleep and I am able to do it completely alone, start to finish. Neither of us has a medical background. It may not be EASY, but I wouldn't call it hard.

[carol1987]

tyefly.. i think it is great that you a
are so comfortable with your dialysis...
 I was on D for a month in center and am quite responsible but I was not ready to take on dialysis at home yet....
The Op and her husband need time to adjust and wrap their heads around the whole process... I can understand wanting "professionals" to get them started and comfortable.... 

The important thing is to keep learning and to be open to options... when the time is right for them!

[BillSharp]

On the contrary: My nephrologist was all for me trying home hemo, so we (wife and I) trained for about 6 weeks, 5 days a week, and did the process at home for about 6 months. During that time I had 2 severe BP drops, down to 60/30. My wife knew what to do, but me being that near death scared both of us. We decided that home hemo wasn't for us, and I switched to in-center treatment. Still have some BP problems, but nothing as drastic as at home. Some people think that because one modality is good for them that it's good for everybody. Not true.

[carol1987]

On the contrary: My nephrologist was all for me trying home hemo, so we (wife and I) trained for about 6 weeks, 5 days a week, and did the process at home for about 6 months. During that time I had 2 severe BP drops, down to 60/30. My wife knew what to do, but me being that near death scared both of us. We decided that home hemo wasn't for us, and I switched to in-center treatment. Still have some BP problems, but nothing as drastic as at home. Some people think that because one modality is good for them that it's good for everybody. Not true.

Very true!! It is a very personal choice and so many factors are involved...

[M3Riddler]

I'll be honest, I'd like to have someone more skilled than I in charge of my husband's care--at least initially.  We have absolutely no idea what to expect so putting us in charge would be like asking a toddler to care for himself.  I work regular but long shifts so my husband would essentially be on his own--not good.

Kyshiag,

Believe me, after the training period is up, doesnt matter  what type of home dialysis, short daily or nocturnal, you and your husband are going to be more knowledgeable and skilled more than anyone who is in-center. Remember, they have many patients to take care of, where you would only have one. The one on one care is much better. They are treating him out of a book. You would be treating him individuallly with much better care.

Home Dialysis does not require much education. There are many that have not even graduated high school who perform home dialysis sucessfuly. You just have to have the abiltiy and will to do it.  If you have a clean place to dialyze and the will to do so, you should have no problems.

Remember, the employees of a center are mainly there for a paycheck and will not give you the personal touch that your husband needs. There are some in center employees that are good, but is still nothing like family. Centers have a rotating door where you are lucky to see the same tech after 3-6 months.

I would suggest learning about the different options including home dialysis before ruling it out. Has your husband ever looked into peritoneal dialysis?

Read up about it. Ask the people on home dialysis and you will ge it from first hand instead of those in-center who know very little what it is....

///M3R

[boswife]

kys, i am (as a newbie! to this nx stage) going to give you my (in short, thank goodness) expreience with getting into NxStage.  After hubby was on D for about 6 months in center, which btw was a very nice one, we thought why not go and at least check out what nxStage had to offer.  We went to our introduction and almost didnt even make it through it.  My fear of needles was just too much, and thank goodness hubby made the decission to not do it as it seemed WAY too much involved for someone so new to D.  Another 6 or so months went by, still happy with center, but we got buttonholes and i spazed not wanting different techs to stick him.  We came here, and the nxStage site, got up our confidence, and well, here we are, just beginning our second month at home.  Iwill say, it kicked my *anxious* butt, but!!!!!!!!  if it wernt for my own personal issue (anxiety to the max) i think it would be just a wonderful learning experience, and really, it all fits together after the first 'flood' week of learning. What im mostly trying to say is, i completly COMPLETLY understand where your comming from in wanting someone with experience to care for your hubby.  I HAD to do it that way as well.  It was frightning to even do that but with other illness, and my love for him, it was one reliefe to feel he was in good hands AND i had a few hours a few times a week to get my head together while other competant people were watching over him.  Sooooo, it's something that you are going to work in your own time on how you wish to do it for the two of you.  I will add that i am VERY happy with my decission to do NXStage.......... at this time    And was happy with my decission to be incenter when we were there.  Your a good carring person and can support hubby either way.  Just know that when you choose, you CAN do home hemo and it's really nice to do at your own time, slower speed to protect  the heart, and spend more time together       I really should deleate about half of this, but guess i wont...  Sending you the best wishes ever.  and...... i am a fan of NxStage!!  but huge fan of people and what works for them.

[peleroja]

I don't see anyone having mentioned PD.  I live alone and have been doing PD for 7 years, no needles involved.  I've heard it is kinder and gentler on the body.  Is PD an option for hubby?

[kyshiag]

Thanks for all the info and encouragement! 

My hubby's neph says he would not suggest PD for my husband due to his size and problems with weight.  He feels that PD would not get him clean enough and would add extra weight.  I did offer it tough because I felt I could do that at home better than home hemo.

[del]

He's responsible, he's just not a medical professional.  I never said home nocturnal was off the table; just off the table initially.  I don't think anyone would volunteer to deliver their first baby...and there is the mentally getting your mind around it, too.

I've never heard dialysis referred to as easy.

You do not need to be a medical professional to do home nocturnal - you just need to be trained to do it!!  It took about 5 weeks training for us and neither of us are in any way medical professionals.  I'm a teacher and hubby was a school bus driver!!