I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Home Dialysis - NxStage Users => Topic started by: lunadatura on July 02, 2010, 08:32:43 PM
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PLEASE HELP
I want/need to do nx stage home hemo due to need for weight loss. I liked PD for home treatment but hated the weight gain and missed hot tubbing/baths/swimming. Due to other medical issue - mashed knee requiring surgery and rehab - am temorarily back in center hemo via IJ catheter. I have lost some weight and dont want to go back to PD and regan weight. Transplant team wants me to loose belly fat due to concern about healing surgical wound site.
NW kidney and nxt stage website say home hemo requires care partner - is this true.
I want to know if anyone else is successfully doing nx stage home hemo on their own.
please more information/experience/advice!!!
Edited: Fixed subject line error - okarol/admin
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Meinuk did it as a single person.
http://ihatedialysis.com/forum/index.php?topic=5229.0 (http://ihatedialysis.com/forum/index.php?topic=5229.0)
This is her nxstage training diary.
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Bill Peckham from Seattle does home hemodialysis on his own, alone, since 2001.
From his signature:
http://www.billpeckham.com "Dialysis from the sharp end of the needle" tracking industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
* 4 to 6 days a week 40 Liters @ ~270 Qb ~ 8 hour per treatment FF33
One of his early posts:
http://www.billpeckham.com/from_the_sharp_end_of_the/2007/12/cannulation-vid.html
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You have to have a partner for legal reasons. If you are motivated and able to do it by yourself, you should do that because most sources say it is in the patient's best interest to do as much of the work as possible, up to and including everything! I don't want my "caregiver" to have to do any more than necessary
I fully intend to do NxStage by myself eventually, but I have a training partner for the beginning and I may have to "fake it" for a while during the home visits, etc. They just can't take the legal liability of telling you can do it alone. Also, many people are truly not up to doing it all by themselves, and in any case it's always good to have someone to back you up. So I suggest play along and see how things develop.
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I do nxstage alone and know others who do the same. Absolutely no problems.
I would not like to be tied down to a partner's availabilty - D is a short enough leash as it is.
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My doctor insisted that I have to have a partner (and my wife agrees). So Joan, mdw, is my partnet. I think that I could do it just fine alone. That is not to say there are not situations where a pair of extra hands are quite welcome. I have a difficult cannulation situation where it is helpful for a partner to steady my upper arm graft that tends to try to "run away" when I approach it with a needle. Other than that, I do it all by myself. I think if I was alone that I would seek out another NxStage patient and try to partnet with them...Sid
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PLEASE HELP
I want/need to do nx stage home hemo due to need for weight loss. I liked PD for home treatment but hated the weight gain and missed hot tubbing/baths/swimming. Due to other medical issue - mashed knee requiring surgery and rehab - am temorarily back in center hemo via IJ catheter. I have lost some weight and dont want to go back to PD and regan weight. Transplant team wants me to loose belly fat due to concern about healing surgical wound site.
NW kidney and nxt stage website say home hemo requires care partner - is this true.
I want to know if anyone else is successfully doing nx stage home hemo on their own.
please more information/experience/advice!!!
Northwest Kidney Centers supports self dialysis/dialysis alone.
from their FAQ (http://nwkidney.org/nkc/dialysis/homeDialysis/faqs.html):
Do I need someone to help me with dialysis at home?
- Most patients manage their own care with little or no help from another person
- If you need help, NKC will train your family member, friend, etc. to assist you
I live alone and as Zach posted have been at home through NKC since 2001.
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I am not yet at ESRD, and I will fight tooth and nail to do nxstage. I think it is horrible that single people who live alone are discriminated against when it comes to doing nxstage. If the patient has proven to go through the training and shows that he/she *can* do it on their own, then that should be allowed. Bill, is there anything you can do to help out Luna, and all the other single ESRD patients out there? I live in the Seattle are also.
KarenInWA
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I am not yet at ESRD, and I will fight tooth and nail to do nxstage. I think it is horrible that single people who live alone are discriminated against when it comes to doing nxstage. If the patient has proven to go through the training and shows that he/she *can* do it on their own, then that should be allowed. Bill, is there anything you can do to help out Luna, and all the other single ESRD patients out there? I live in the Seattle are also.
KarenInWA
I've heard that it was the FDA that required the "trained helper" language; I don't know how to change FDA policy. It's a straight forward argument, though: How can I have the right to not dialyze at all, yet be denied the right to self dialyze? It makes no sense.
Any doctor/unit can prescribe home self dialysis ... the FDA policy means only that NxStage can't market their device as something that can be used alone.
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My advice is that you need to be very thoughtful about this. How you present yourself to your medical team is a GIANT part of the battle. Some questions to ask yourself:
Are you:
In control of your medical care as it is now?
on top of meds and appointments? Do you discuss your blood work, and do you understand why each value matters? Potassium, Phosphorus, etc?
Aware of your body and how it reacts to hemodialysis? Are you careful with your fluid/ is your Blood Pressure an issue?
What is your medical history? Co morbidities?
Are you easily stressed? Do you have any history of anxiety or panic?
Are you TRULY self sufficient?
These seem like harsh questions, but I can tell you that the medical team (if they will even listen to you) will be even harsher. You will need to prove to them that your safety is your biggest concern, that you can truly care for yourself and handle any emergency situation that may arise. If something happens to you alone at home, they will be blamed as your medical team. You need to prove to them that you are worth that risk. Until we change the prevailing stereotype of who we patients are, the system is working against us.
I had a seven year relationship with the medical director of my unit (he had been my nephrologist) and when he decided that I could do NxStage solo, I still had to convince the training nurse. And she flat out told me she didn't think I could do it before she met me.
Of course, once she met me, things changed rather quickly. I had no qualms blogging about my training. I had no qualms writing publicly about every bump in the road, and then my DaVita unit was closed by the State of New York for health code violations, and I was ALONE. No medical team, and no unit that would have me (or so I was told by the social workers and Davita).
When I finally found a unit that would have me (thanks to a man who works in the system, but can't be named (I don't want his job threatened)). I had to jump through the most insulting hoops and be lectured by more people about "being a danger to myself" that I would go home at night and cry. In one month, I went from being celebrated for my accomplishments as an individual with CKD, to being called a danger to myself, it was heartbreaking. It took everything I had to bite my tongue and take it, but take it I did, and I smiled, I went through the motions, knowing that the end was in sight, once we signed on the dotted line, my new unit supported and supplied my home hemo habit. My goal was to get NxStage to keep sending me supplies and until I had a unit, no one would send me supplies - all that bowing, scraping and jumping through hoops worked in the end.
Now, almost two years later, I can look back and ask myself "would I have done it any other way?" Should I have brought in a fake training partner? (It would have been so much easier). No, I am glad for the battle. I feel like it is one of my life's victories. My fight to stay at optimum health. I won, and I didn't have to lie.
Now, that being said, you don't know me, but I can safely say that I am a fighter, I have no problem taking my lumps in the ring if it matters. I am good at the fight, and although it does sadden me at times, I can take it. But I can also tell you that sometimes the easiest path is to lie. BUT if you are going to lie, DON'T post about it here on IHD. This is a public forum, and it is read by people in the industry. We can all be easily identified by someone in our unit. I was called out by my training nurse for being critical of the NxStage supply delivery system. (and she did not read IHD - someone from NxStage contacted her). Just remember everything here is public.
My experience has been that each state has their own regulations (based on National policies) when it come to home dialysis. But every regulation has a loophole. Some centers bypass it with remote monitoring, others rely on the MD who is licensed to write orders that may be off label.
I hope that you get the best dialysis possible. Either high dose home hemo or in center nocturnal.
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I am so glad I finally found this forum. I have learned some key things about what's possible with excercise and now all this great info about NX stage - the folks in this forum rock!!
That said I really appreciate what both Bill and Meinuk had to say about yes its possilbe and you have to be smart about being an exemplary patient. I slouched a bit in PD and got caught doing it. My doctor said she needs to see me more compliant with phos/potassium. The good news is that on Hemo I have lost 25 pounds in 6 weeks - alot of that must have been hidden water weight from the PD. I say hidden water because my ankles did not show the edema. The other good thing is the my BP have been really good - i mean i used to run like 165/90 and no i run 120-130/80-90
all the best
Luna (not my real name)
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Yay Luna!!! :cheer:
Congratulations on losing all that pesky water weight! I wonder, if you have access to a sauna, would that help in losing water weight, too? Granted, it'd be slower than the hemo, of course...
KarenInWA
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Hi Luna,
Yes, it is possible to do NxStage at home alone. I am starting training tomorrow which I expect to go for about 5 weeks. I have a fiance but he lives in the city part of the week and I don't want to have dialysis be his responsibilty. I am excited to start training and am looking forward to increased energy, health and freedom. I am 41 and had a transplant in December 2007. It failed this past December and was removed in February. I started in center hemo in January. Looking forward to the next step. With the right attitude and resources anything is possible. Check with a NxStage rep to see what may available in your area as I do understand that not alot of centers offer solo training, many if most most require a partner, but if you really want it, do the research so you know what your options are. Best of luck and I will let you know how my training goes! Wish me luck...lol
- Torre
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In the center that my fiance goes to you have to have a partner. Now this partner could be anyone you trust as long as they will be there with you every day for at least while you do your treatment. Another option that I have heard of is that you pay someone to do it like a tech at the center that you trust. I know that could be expensive since it is not covered by insurance but those are some of your options. I hope you find a way to do it. I know it has made a big difference in my fiances life and well being.
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I was told I had to have a partner to train with and always present if I dialysed with NxStage.
But once you do the training, and you felt confident enough, I think you could just go ahead and learn to dialysis alone.Just don't tell anyone.
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I do everything my self...... no problems..... you learn the tricks to get it all done.... I did have to have a care partner during training but that person came in only a few times to learn the emergency stuff...... I have no problems and I even take nxstage with me in the RV.... camping, to the beach and just where ever I can find 110 or a generator..... I just wish they made the machine weigh less.....LOL.....
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I have seen a lot of "things" happen in-centre with people "crashing" - low BP, very high pulse, bleeding not stopping, chest pains and lots more. I am going to be very honest here and say that home hemo scares me and hubby - big time. Not that it is an option here in SA. It is not.
I would be even more scared to be doing it alone.
What if you fainted or something?
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I have seen a lot of "things" happen in-centre with people "crashing" - low BP, very high pulse, bleeding not stopping, chest pains and lots more. I am going to be very honest here and say that home hemo scares me and hubby - big time. Not that it is an option here in SA. It is not.
I would be even more scared to be doing it alone.
What if you fainted or something?
One thing to consider is that by dialyzing more frequently we're avoiding the big fluid gains between treatments - the big fluid gains which then lead to the attempts at big fluid removal ... big fluid removal/a high UFR that causes the complications.
The other thing is that by dialyzing more frequently there is no reason to "challenge" my dry weight ... that tendency of incenter dialysis staff to see how low they can go. I set my fluid removal based on BP and any other signs but I don't take off more than 3KG over an eight hour treatment - this keep the UFR well below 500ml/hour, the cramp speed limit for a lot of people. I know I'll dialyze the next night so I feel no need to get every last liter.
Those cramps or feeling faint are products of short infrequent dialysis, not dialysis in and of itself.
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of course nx stage and your trainer will tell you not too, believe me its only for your benefit b/c if you do pass out no one is there to flush you back. and god forbid if your needles get yanked out or someother disaster who is there to help? i have done treatments on my own but found my self very apprehensive as to my bp ALWAYS drops significantly. take care and good luck if you want to try it alone.
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of course nx stage and your trainer will tell you not too, believe me its only for your benefit b/c if you do pass out no one is there to flush you back. and god forbid if your needles get yanked out or someother disaster who is there to help? i have done treatments on my own but found my self very apprehensive as to my bp ALWAYS drops significantly. take care and good luck if you want to try it alone.
After nine years I have no regrets. Helpers are as likely to make a mistake as dialyzors, maybe more so. Taking full responsibility focuses the mind but as always know thy self. If you crash each run that's an issue all by its self.
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I have a partner because i WOULD NOT BE ALLOWED TO HAVE THE MACHINE WITHOUT ONE. HOWEVER i DO IT ALL BY MYSELF SHE IS forlegal reasons, they nave a good reasonfor having one just incase something goes wrong you have someone there to help but I cant be tied down waiting for someone to be home for meto do it. so far so good
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According to NxStage you MUST have someone there with you who is trained. Although some do it by themselves they shouldn't be. I can tell you..with my background (9 years in the medical field in the Army) I would NEVER go through a treatment alone. You're just asking for trouble.
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From what I hear the FDA required the requirement for the presence of a trained helper. The FDA was misguided and has erected a needless barrier to home dialysis. A barrier that is not, medical best practice. Based on the experience of programs in Australia and Canada, self care is the best care in terms of outcomes and long term viability.
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According to NxStage you MUST have someone there with you who is trained. Although some do it by themselves they shouldn't be. I can tell you..with my background (9 years in the medical field in the Army) I would NEVER go through a treatment alone. You're just asking for trouble.
John, this is going to sound harsh and I just can't think of any other way to couch it, but your attitude is exactly what is wrong with dialysis units today. Your nine years as a medic in the military did NOT prepare you for a lifetime of chronic treatment. Just as institutional sub optimal dialysis does NOT prepare staff for optimal dialysis. You saw trauma and triage - how much dialysis did you actually do in the military? In the units, they see undedialyized patients, people who are sick and quite often have serious co-morbidities - but that is NOT the whole population with CKD5. You can't lump everyone into one group and one skill level or penalize them for being single. Your acute military medical experience has warped your expectations. Cookie Cutter in center dialysis has institutionalized people who may actually be able to thrive, should they be able to dialyize themselves at home (if only they would be trained).
It is not easy and a person has to be exemplary and stable to be able to do solo dialysis, but you or overworked staff should not be the arbiter of how a persons CKD5 should be treated. It should be an individual decision between the dialyzor and the medical staff treating them. I have written extensively about the strict criteria to do solo dialysis. It does need to be entered into seriously, but for you to say that it is just "Asking for trouble" well, that is simply wrong. It is actually asking to be as healthy as possible, but it is a commitment.
John, if you had your way, I would have been stuck in a sub par unit that infected nine of my fellow patients with hepatitis C. Instead, I was trained to do solo home hemo via NxStage, and I was able to work full time, travel (nationally and internationally) and I was in the best possible shape that I could be in before I received my transplant. (and there are some who would say that I am far more dangerous behind the wheel of a car than at the side of a dialysis machine... both could be done solo, and both could kill you after all. But I digress.)
Please consider that people actually can consider the risk and still can undertake something that others are frightened of, solo diaysis can be done (and is being done). For me, it was a risk worth taking - when faced with the alternative of 3x a week incenter dialysis.
Being single does not equate to being incapable or reckless, sometimes, you just have to do what you have to do.
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I trained with a partner (my dad), but I have always dialyzed myself with no assistance. I now live alone, and I dialyze alone. I've never had a problem I couldn't resolve on my own. Just the other day, I had the drain line pop off the back of my machine and I had used dialysate spraying all over the place. I had to put my finger over the end of the tube the came apart while I turned the dialysate and UF pumps off with the other hand. I then had to get down behind the machine (while I was still on it), and reconnect the drain line. I am 100% comfortable dialyzing alone.