A perspective on the cons of SDD with NxStage

Re: ESRD Home Hemo NxStage

I trained on Nxstage for the past 2 weeks. I found it
to be a great product for the right ‘team’. (it takes
two to tango on Nxstage)

I am 58 (on Aug 20), my wife/Nxstage partner is 60. I
have a heart condition. I am not eligible for a
transplant. I hated the thought of dialysis three
times a week, four plus hours a treatment and commute.
With Nxstage it would mean about two and a half hour
treatments plus about one hour set-up/break-down but
no commute. They do supple everything and I mean
EVERYTHING needed. BUT, going to dialysis three times
a week vs ‘going to’ dialysis SIX times a week, and
not for a year or two anticipating a transplant, but
for the rest of my life is pretty depressing to say
the least.

  1. It takes a partner willing to give up 4 hours a day
    in monitoring/assisting me on the machine. You should
    not, and really, cannot do it alone. So, what if your
    Nxstage partner is sick or hospitalized for any length
    of time? What if your partner wants a ‘life’ that
    conflicts with my dialysis schedule such as full time
    work? Do it at night? That would mean your partner
    wouldn’t be able to have any sort of night life, such
    as going out ‘with the girls’ in my situation. That
    is an awful lot to ask of someone, in my opinion.

  2. It takes four bags of dialysate, 5 liters a bag,
    for each treatment. Do you have any idea what 5
    liters weight? about 11 pounds each bag. Lifting that
    much weight isn’t really ver good for a person with
    heart problems or for a small woman 60 years old, or
    for a partner who might be ill at the time.

  3. The paperwork is fun for a week or so, but does get
    tedious during treatment every half hour plus
    calculating weight vs dry weight, how much to take off
    with flushes and other saline you get during treatment
    then entering all this into the machine.

  4. Did i mention your partners evenings being shot to
    heck during all this every night save one? Well, so
    isn’t my evenings shot to heck because of her full
    time job. And wasn’t that my goal? To have home
    dialysis to get some freedom? Well, there really
    isn’t that much freedom.

  5. Home dialysis for travel? The machine weights
    70lbs, which is heavy in any terms. Plus two cartons
    of dialysate per treatment (22 lbs each carton) .
    Frankly if you are looking forward to a long weekend
    or a travel week, you need a good sized truck to bring
    your supplies with you.

I have thought hard about what home dialysis would be
for me, and true, daily dialysis does keep my body a
bit better for i wouldn’t accumulate weight which
would be good for my heart, but at what cost to me and
others. It isn’t a decision you take with only you in
mind but what sacrifice it would mean to your partner.
As i said, this is a life long decision for both me
AND my wife, day after day, year after year for God
knows how many years. That is a lot to ask someone to

I stoped home Nxstage this week which would have been
my third wweek of training. My trainer said we were
doing fabulous, and make a perfect team. However, as
I said, I hate dislysis in the first place, how can I
face it for the rest of my life DAILY? How can i
really ask a partner to give up a substantial amount
of their freedom to look after me for the rest of my
life DAILY? I cannot, with a good concience, but that
is me, and my wifes life is just as important as mine.
And when i think of it, i have 4 absoulutely free
days with clinical dialysis instead of one free day
with home dialysis.


Heather, what’s the point of posting this? Nobody has ever said that home dialysis is the right choice for every person with kidney failure. There are some folks who feel more comfortable with technicians taking care of them, or who don’t want to have medical equipment in their homes, or who don’t have a partner, are afraid of needles, whatever. They have that right. This isn’t news.

Also, I’m not sure if it’s okay to post a private email message sent to a mail list (yes, I’m on that list, too, as I’m sure you know, and so are other folks here) to a public forum.

I would have to agree with Dori, that’s not really news…its common…even my clinic trained a few patients for Nxstage but they returned to in-center clinic…all for different reasons.

Basicly we all are adults now and we make our own decisions. We choose whats best for our needs.

I see that came from the listserve, I wonder how angry the listserve owner is for copying their private information and posting that in public forums … :roll:

Well, that is his choice, but IMO it was made far too prematurely to be considered an informed choice. TWO weeks of training, especially when the trainer said they were doing well, is a good start but, not long enough to know the true effects. Again just my opinion, but I think this is a poor trade off which will probably shorten his life and degrade his quality of life.

I did this post as I thought it was of benefit to show the responsiblity, reality and health level required to do home txs, solo, or with family assistance. I am totally pro-home hemo, but I know I have read a lot of posts that gave me the impression that daily home hemo is not that demanding of one’s time and energies. It really depends on the patient’s health level and/or the degree of support one has. Some manage completely on their own and some require a significant amount of support from family. Yes, most here know this, but not everyone does. I don’t think anyone really knows how well they will handle daily home txs until they actually try it, and even to try it, some need more support then others.

Regarding quoting from the other group, my apologies if a broke a rule of netequette. Anyone can read the messages in public forums so I did not think it was considered a no no to quote from a public forum. Does anyone know the rule for sure?

Also, the motivation for my post was the fact that I was thinking, many more patients could get better txs either through daily home txs or through opening up daily programs in-center if creative approaches were taken.

In another post I read, a home patient said she is thinking of hiring a nurse one day a week to give her husband caregiver a break. I, myself, was thingking, I wonder if a student nurse would want to assist a home patient in return for the experience of learning to conduct dialysis txs.

Something else I thought of- unless the patient is fully capable of running his txs, if the caregiver for whatever reason can not assist, is the patient prepared to either go back in-center or does he have a backup plan?

Now that home txs are opening up, I seem to hear a lot of doubts from in-center patients as to whether they would be able to handle going home. I think a lot more would take the step if there were creative means to make it possible for them. If Medicare paid a stipend for a caregiver wouldn’t that still save over expensive hospitalizations?

I think the poster made some very valid points that the role of caregiver can be a very heavy committment. I hope the wave of the future will be creative options that free more patients to either go home or to get daily txs.in-center.

The other group is a listserv and it is not open to non-members. So yes, cutting and pasting a private email to a listserv and posting it to a public forum is a breech of netiquette. Just as remaining unregistered while dominating a public board is poor netiquette or just as using more than one user name is poor netiquette.

The easiest way to be a good netizen is to be yourself and post what you think or experience.

Guest wrote:

Again, an indication that they are new to all of this. They should not need an entire evening to do a dialysis treatment which with practice will probably take less than 3 hours, and maybe less than 2.5 hours.

How can this be if the tx itself takes 2/12- 3hrs or more? What about set up and tear down time? Yes, I’m sure one get’s faster with practice. One person said she could set up/tear down in 25 min. Another said its more like an hour for him.

Absolutley, that’s why awhile back I recommended to Dori not to allow guest posting, simply people will take the advantage of that opportunity and just abuse it…

[b]For most on NxStage tx usually takes 3 hours or less, and some less than 2.5. For those w/ experience, setup is done during the prime and wipedown afterward takes less than 5 min. If two people are involved it certainly can be done in way less than 3.5 hours for a full 3 hour tx.

Ask Gus how long it takes him, or ask Bill over at ihatedialysis. Bill has been on NxStage about a month[/b]

Heather, that is precisely why doing home dialysis is not for everyone. Do you really think those who choose tx @ home aren’t aware of the items discussed in your posting? If you think they aren’t aware, well, thank you for the opportunity for enlightenment, but I doubt it is warranted. Patients that do hemo at home are awesome people. It’s the epitomy of self care. Not everything goes as planned and they deal with it. Water, needles, the whole nine yards. If the patients or caregivers need a break or get overwhelmed, they can return in center. The modality remains their choice. :shock:

I’ve been on home hemo for about two years now. The first year and a half was on the baby K. I tried several different perscriptions, 4 times a week @ 5 hours a day, every other day for 4 and 5 hours and finially short daily on the baby K. Then I was able to move to the nxstage about 5 months ago. I would have to say in my experience, being in-unit two years and home hemo on two machines for about two years, the statements by Richard were accurate. I would not want to give up home hemo but there is a price to be paid by the patient and family. I don’t see any problem with posting the good and bad of any of the modalities. I had already read Richards post on another board and assumed he had given permission to post it. I guess not.
For all the work involved with home hemo, I wish it was possible for everyone to have the extra benifits but I realize as adults we must all make decisions that fit our own personal situations. It’s a shame with dialysis that there is no magical fix just a lesser of evils.

Hi y’all,
Gus wrote:

Absolutley, that’s why awhile back I recommended to Dori not to allow guest posting, simply people will take the advantage of that opportunity and just abuse it…

Yeah, there are good and bad points to requiring folks to register. On the one hand, a Board like DaVita’s that requires registration to post has many more registered members than we do–probably five times as many. But, forcing folks to register scares some away. So, even though our Boards and DaVita’s started within 2 months of each other, the Home Dialysis Central message boards have had more than three times the posts.

To us, it’s more important to create a vigorous, open forum than it is to know who everyone is. :smiley:

Of course, it scares the abusers away… :wink: …just kidding, your the Queen of this board, you set the rules… :slight_smile:

Well I don’t allow guests and my site has only been open for just over a year and we are hitting are 12,000+ posts with over 285 members. I think not allowing “guest” posts makes a person more accountable for their posts. And if a person can’t take a couple of minutes to register then so be it. But this is just one admin to another, just my advice. Your site, your rules. :smiley:

But to get back on topic, I have my machine set up within 5 minutes or less not counting the 18 minutes priming. I put myself ON ALL BY MYSELF but my wife is around in case I need her. I do believe some people start training and they feel overwelmed by the thought of 6 days (I do only 5) and all those bags and steps but it gets easier and easier. Read my journal of my day to day training at http://ilovenxstage.com I was scared as hell too the first day! :shock: I have been on about a month not counting training time and I LOVE it, I actually have no problem doing 6 but I feel great with just 5.

Epoman, I’m thrilled to hear that you’re liking NxStage and doing so well! :smiley:

Absolutely, isn’t that wondeful? :smiley: Another NxStage convert and more to follow…

It is normal to feel that way when switching to daily-short…I mean c’mon, I felt the same way…would say to myself…“6 days a week!”…my gawd, am gonna die! …lol! :stuck_out_tongue:

The hard part was adjusting to the liberal diet…while in-center I was already use to the restricted diet and had to re-train myself to enjoy eating more foods…

With almost two years doing home dialysis things have since changed for the better! I may not say 100% but 30% better than in-center…its a bit more effort but its all worth it. :smiley:

Go For it Heather

i don’t know why the elite were so upset with your post.

Home dialysis with whatever machine is not for everyone. I’m on nxstage it is ok it could be better. It takes alot to run the system with everything a pt has to do, but all the home systems have ups and downs. Dialysis pts as a whole have a very small voice , untill the whole group or at least the #'s are bigger than are speaking now , dialysis pts will never be heard. I sometime find that the folks who this run page and some of the elite home pts have forgotten the people in center. (You see that they do not a section for in center pts. I know that there are sites for them.)

Ive seen posts on here from epoman and Gus that are child like, ( i did this first ,no I did) I recall epoman first posts, he got the folks who this run site to run his site. And Gus posts his site.

I still look into all the sites, I just could not let Heather get blasted . The bottom line is getting information out to people on everything. I would go onto DE board but it seems that the people who run that do not really care what is posted. I’ve seen epoman site and Gus sites. Move on folks.

hey Bill lighten up. can I email you. I email a Dr, that says he has talked with you and gives thumbs up. I really do not like to email folks, but you are very active in pt concerns. I won’t send anything evil, I just want to ask something out of this site.

Bobeleanor :roll:

That wasn’t the point, if you look closely, some guests are copying/pasting private posts from listserve which in most cases is not appropiate to do as those messages are meant for members on the listserve and not public forums…

I totallly agree with Bill’s statement and of course Dori’s…sometimes you have to say something about it to stop that habit…just remember, a private listserve is different than a website and/or blog. :slight_smile:

Snark. It is not a matter of being upset, it ‘s just the answer to Heather’s question - it was and is a breech of etiquette.

Etiquette: practices and forms prescribed by social convention. The internet is a new landscape we are all finding our way through; I like the fact that one does not need to register to post to HDC. In an industry of control zealots it’s nice to have a place with a minimum number of rules. And there is the if it aint broke, don’t fix it convention.

Bobeleanor feel free to email me, include the word “dialysis” in the subject line and it will get through the spam filters. I will say though that I prefer that people ask me questions on one of the Boards I post to because if you have a question others probably do too and you’d also get input from all these other fine posters. However, I can get behind keeping up with email and the message boards but it is easier to come back to a message board question, a missed email stays missed.

I recall epoman first posts, he got the folks who this run site to run his site. And Gus posts his site.

HUH? what are you trying to say? Are you saying the people who run THIS site are running MY site. :shock: My site is in no way affliated with homedialysis.org or any other site, I built my site from the ground up myself.

Also I don’t consider myself “elite” because I do home dialysis, although I do agree with you that some people here are elitist in their thinking, which is one of the reasons Gus and I had a fall-out. He was always reminding people on my site how much better daily hemo is over in-center, YES he is right about that, but I had many members getting tired of hearing about it every other post of his. Since for MANY “daily home” is NOT an option. In fact I love nxstage so much too and it is hard for ME to contain myself. I just wish EVERYONE could do next stage, but I am not going to constantly remind them how great it is when I know most can’t do it, due to various reasons.