Hi all:
I am not currently on dialysis, but I’m soon to be there. I am inquiring as to people who use the NxStage Pureflow system for daily home hemo. I know the training takes around 6/8 weeks, but my question is this: how long did it take any one of you to get back on your feet? Were you feeling better after a certain time? The reason I ask this is I have two months of disability my employer is willing to give me, but I am afraid to find out later that I will need more time in order to recover.
How long does it take to get used to the dialysis?
Dear Catwoman:
I have been on the NxStage for a year and six months. For me, the training took three weeks. I guarantee that you will feel so much better from daily dialysis. Honestly, In-center dialysis is for the birds. With my NxStage machine, I have dialysis for five days per week, five hours per treatment. I am on the machine as I am writing to you. 
With my medicine, I eat what I want and I can drink what I want. Your body will love NxStage and it will hate In-center dialysis. According to my Nephrologist, my health for a kidney patient is in the top 1%. I hold a full-time job at night. When I started In-center dialysis, I was 38 years old, I have been an athlete. After the first couple of treatments, I felt like someone had beaten me with a baseball bat. At my job, I walk a minimum of one hour per day, many times, it is more like 2 hours per day. If you go to In-center dialysis, you will be living with control freaks, is that what you want? I have played offensive line and I have wrestled as a heavyweight. When they took out the fluid, I have never had so much pain in my life and I can stand tons of pain. Yet, when I asked the R.N. to help me, she said she did not have time. At that point, I thought, “I am outta of here.” If you think I hate nursing people, my mom was an R.N., so is my sister and my aunt.
My mom’s best friend from nursing school, St. Barb R.N. was like my parent when I was a young child. When I started NxStage, I felt so much better, did not have a get used to it time span.
Mark
Mark:
I guess it’s difficult for me to ask the question to you because you started your dialysis “in-center”. I hope to get with NxStage for the training when I “start” my dialysis. I was just wondering how it affects you the first couple of times while you’re doing the training.
As I am not on dialysis, I have a feeling it’s going to take some time for me to get use to dialysis. I am not sickly - still have a good appetite and still eat and drink most of what I want even though my labs come back normal. I simply feel a little tired occasionally, have sleep problems. My GFR is at 13.
I figure it’s time I start the preparations now and hope to have a NxStage training center close to my home.
Thanks for the tips on the “in-center” - don’t think I will want to go through that type of situation.
Well Catwomam I congradulate you on taking the first steps in the right direction…give youself a pat…why ? It is so so important that you take control of you situation by asking questions…avoiding in-centre dialysis is another step…I doubt that you’ll spend 6-8 weeks training … there is a huge amount of information out and about that you’ll need to sort through…along with this site perhaps you’d like to take a gander at these 3
http://www.nocturnaldialysis.org
http://gil1.home.pipeline.com/esrd
http://www.kidneyschool.org/
[QUOTE=catwoman;16426]Mark:
I guess it’s difficult for me to ask the question to you because you started your dialysis “in-center”. I hope to get with NxStage for the training when I “start” my dialysis. I was just wondering how it affects you the first couple of times while you’re doing the training.
As I am not on dialysis, I have a feeling it’s going to take some time for me to get use to dialysis. I am not sickly - still have a good appetite and still eat and drink most of what I want even though my labs come back normal. I simply feel a little tired occasionally, have sleep problems. My GFR is at 13.
I figure it’s time I start the preparations now and hope to have a NxStage training center close to my home.
Thanks for the tips on the “in-center” - don’t think I will want to go through that type of situation.
I am not sickly, either. In center dialysis is tough because you are only using the machine three times a week. On NxStage, you will be running 5-6 days per weeks, so, the treatments are very gradual and your body will appreciate it. More than likely, your treatments will be 2 hours per day, a much easier treatment schedule for your body. I really doubt that it will take 6-8 weeks for you to learn the machine. Yes, being tired and sleep issues are very normal.
Everyone is different. If I were you, I would start looking for a home program that offers NxStage. You want to be ready for when you will need dialysis so you can avoid going to a center.
Mark
NDXUFan@aol.com
Hi Folks
Hi CatWomen
What or how you start depends on you and your Dr. In my case my Dr was not even brought into the talk as to me even going on dialysis , then was not a part of where I ended up. I would have very much liked too have started on the nxstage to, but ended up in a warehouse for dialysis consumers. A ton of people cramped into as tight as sardines.
I hope that you and your dr will work things out, but don’t count on it, the dialysis world isn’t always set up to do the right thng for healthcare consumer. If you have follow this board and other sites the good centers are far and few between. In my case I had to work my ass off to get on nstage. The whole time the dialysis team telling how and when I would die, and that if I didn’t follow the “rules set up by the center that my tx’s would end”. Most folks on this board are just so over joyed at the idea of here in 2008 the medical world has given people the right to live.
If you do get on the nxstage , go for the long tx, I do 8 plus a night. You may have to fight for it , but if you have a life doing dialysis while you sleep, is the way to go…
thanks
bob obrien
[QUOTE=catwoman;16422]Hi all:
I am not currently on dialysis, but I’m soon to be there. I am inquiring as to people who use the NxStage Pureflow system for daily home hemo. I know the training takes around 6/8 weeks, but my question is this: how long did it take any one of you to get back on your feet? Were you feeling better after a certain time? The reason I ask this is I have two months of disability my employer is willing to give me, but I am afraid to find out later that I will need more time in order to recover.
How long does it take to get used to the dialysis?[/QUOTE]
Bobeleanor - your post surely is negative. I guess not everyone has it easy. I’m keeping an open mind on this and keeping “positive” that my plan works out. I hope to “discuss” this plan further with my doc and so far he hasn’t said “NO” to it in the interim.
I will continue to work through whatever challenge comes my way. But at least I have hope!
Hope that NxStage is the answer to my dialysis.
While my In-Center experience was not as negative as Bob’s plight, health professionals are used to being in control with patients. Now, that level of control is starting to shift back to the patient and some cannot handle it. When I posted about control freaks, there is some truth to that concept. Honestly, dialysis is an industry filled with, “Do as I say, Not as I do” personalities. Patients are treated like robots, without feelings or needs. If some of these “health care professionals” could only see or live their oppressive regime within their lives, there would be some major changes. I would encourage you to remain positive. However, I refuse to sugar coat an industry in need of major fundamental change.
Mark
Hi Folks
Hi Mark
As you all can tell I’m still here , I had to fight for myself to get what I wanted, no Dr or health care group to help me or show me the ropes. I give all the dues to the folks at this site. I sometimes find that they are to happy happy joy joy. Which is fine if that is a person needs. I myself need to look at the plus ,but say we need to be better. And the so called groups are not out for the single dialysis consumer, there are for the whole meaning both consumer and provider.
I really do wish Catwomen the very best and hope that when the time comes that she keeps us up to speed.
as to Drs being in control or not, dialysis is the only medical practice that has this much control. I mean once you have cancer surgery the dr can not but the cancer back in you. And once done with any tr that comes with cancer, ends. Or the cancer takes over and life ends.
[QUOTE=NDXUFan12;16437]While my In-Center experience was not as negative as Bob’s plight, health professionals are used to being in control with patients. Now, that level of control is starting to shift back to the patient and some cannot handle it. When I posted about control freaks, there is some truth to that concept. Honestly, dialysis is an industry filled with, “Do as I say, Not as I do” personalities. Patients are treated like robots, without feelings or needs. If some of these “health care professionals” could only see or live their oppressive regime within their lives, there would be some major changes. I would encourage you to remain positive. However, I refuse to sugar coat an industry in need of major fundamental change.
Mark[/QUOTE]
thanks
bob obrien
Bob/Mark:
I post to two boards - here and Davita. I hear so many positive stories about NxStage. And I don’t mean to sound rude - I know for a fact this isn’t going to be like Disney World in the end. But I want to have hope that life on dialysis is just that “LIFE”.
I’ve heard the horror stories. I’ve also heard the stories that some people just don’t care about their lives on dialysis. They go and sit in the chair for 3/5 hours, do their thing and go home without one thought about what they COULD HAVE. I’m fighting for the opposite. I want a life with dialysis. Am I dreaming here? Am I foolish? Should I simply put the gun to my head now and end it all?
Nah…cause I pray to God and hope the angels are listening. Keeping the faith and having hope that my situation will end up better. That is the best I can do - positive thinking to lead to a positive outcome.
Have you asked your nephrologist about getting NxStage? If he/she is affiliated with a clinic that doesn’t offer NxStage and that machine is the one that you want, you can try to convince your doctor to start a NxStage program or you can choose a clinic that offers NxStage and change doctors if necessary.
You could call NxStage to find out where the closest clinic with NxStage equipment is to you. A recent press release posted on the NxStage website reports that “92% of the U.S. dialysis population resides within 60 miles of a center offering NxStage home hemodialysis training, and nearly 80% are within 30 miles.” Although DaVita and NxStage have a partnership agreement, DaVita is not the only dialysis provider that has NxStage equipment.
So far as what you’ve heard about training for home hemodialysis, it is true that training on conventional home hemodialysis machines and water treatment that have things to learn generally takes 6 weeks, sometimes 8. One of the most positive things I’ve heard from patients on the NxStage besides how they feel doing more frequent dialysis is how easy and quickly it was to learn how to operate the machine. Learning how to stick yourself can take some time. Of course how long your training will take depends on how quickly you pick things up.
Beth:
Yes, I have talked to my doc about this. The cool thing is the fact that they are opening a new dialysis clinic not very far from my home and they offer NxStage there. Of course, I haven’t had my fistula prepared yet so I don’t even know if I can use daily home hemo. Gotta get that vein mapping done first and hopefully it all works out.
Yes, I know you’re rolling your eyes, but if this plan doesn’t work out, I know there are alternatives to the “in-clinic” situation. One day at a time…one step closer to a better tomorrow.
Hi Catwoman,
I don’t think anyone is rolling their eyes. Beth and I wish that everyone had the benefit of advance warning of their kidney problems, like you have–and that everyone who has kidney disease would take the initiative to learn about their options and make choices that will help them to have a good life. Asking questions and learning from other folks’ experiences is a really wonderful thing to do when you have a chronic disease. So, you can’t hear it, but we’re applauding you! 
And if you run into any snags, please feel free to check in with us; we’ll do what we can to help you.
Hi Folks
Sorry CatWomen,
If you in good shape now and the only thing that is going are kidneys then your off to a good start.
Speaking only on the Nxstage it is the best thing since sliced bread. I’ve been on the Nxstage since april of 06. Started with daily which was a miles away from in center in that I could do Tx on my time,. After talking to Dr John , and others from this site who were and maybe still are on nocturnal. I went nocturnal in april of 07. The Nxstage with the purflow are changing the world of dialysis.We need more centers (I want all centers) to have the Nxstage
My in center trip was bad, and the first home center was any better. It wasn’t till I hooked up with my third center that the consumer was treated as a person. It is still a pain due to drive to the center . If your luck out and get a center close by with Nxstage then go for it . I was just a bit down , I had been looking to get back to work ,but the company has issues with dialysis and have now taken the job off the table.
Best To You Cat Women
Bob OBrien
Hi guys - yeah, I’m in pretty good shape still - GFR at 13% and my other numbers are normal - would you believe that? Phosphorus, Sodium and Potassium are all normal. I am debating whether I should start dialysis NOW or wait until my GFR hits 10. A another mate said I should get with the Procrit shots, get my fistula prepared and then wait it out a few more months. What are your opinions on this?
And again, the question is whether I can even have a fistula installed as I haven’t had a vein mapping yet. So, do I wait it out or do I start now?
If it were me, Catwoman, I’d get the vessel mapping done and line up a fistula appointment. It’s hard to say how quickly you might go from 13 to 10, but a flu or bout of food poisoning could push it along very quickly, and you don’t want to end up needing a hemo catheter that you could avoid. Some folks have a fistula buzzing along for a year or two before they start–gives it lots of time to get ready.
Knowing Beth, she will want to weigh in on this, but if a company TOLD you that they are taking a job off the table because they have “issues with dialysis,” you might have the basis of an Equal Opportunities claim. I’m glad you’re feeling well enough now that you’re wanting to go back to work. We have a free booklet on our Life Options site that has a lot of information about working and paying for dialysis at: http://www.lifeoptions.org/catalog/pdfs/booklets/employment.pdf
Dori’s right. I couldn’t leave this one alone.
If a representative of the company told you that your kidney failure was the reason why the job wasn’t still on the table, that sounds like discrimination. If the company has 15 or more employees, it’s covered by the Americans with Disabilities Act and must not discriminate against people with disabilities (or their associates…like family members or friends) who can do the “essential functions of the job.” The Equal Employment Opportunities Commission (www.eeoc.gov) enforces that law. If the company was smaller, state law may provide protections against discrimination on the basis of disability. States often have an agency called “human relations” or something like that which enforce state anti-discrimination laws. In most cases, patients aren’t told that their health is the issue, but they believe that it kept them from getting the job.
If you’re looking for a job, you might want to check with your state Vocational Rehabilitation agency which can help you get more training (if needed) and/or find a job. It appears that people who work in a large company (300+) are less likely to face employment discrimination. Another option is to work for government (local, state, or federal) where people with disabilities get extra credit in the application process. The employment booklet that Dori mentioned has a number of resources to help you find work.
Hi Folks
I want to repeat that I’m sorry to CatWomen for coming off the way I did, and wish her the very best. And I hope CatWomen stands firm in wanting to get on the Nxstage as soon as the time comes. In a idea world that is the way it should happen. I will start a new thread on my time on SSDI and looking for work.
Best to CatWomen
Bob Obrien
Hi guys:
Just wanted to clear the air a bit about my post. My BOSS told me that I only had four months before they would replace me. It’s not the COMPANY that told me this - not the president of the company, but my boss who said this. I am fortunate to be able to have at least these four months of paid disability. Many companies don’t give you anything.
Yes, it upsets me that I may lose my job because my boss is a control freak, but if that’s the way it is, that’s the way it is. There isn’t much I can do about it.
I appreciate your feedback and opinions about starting dialysis. I do believe I am in the process of getting with my doc to schedule an appointment for a vein mapping. Yes, I am starting the preparation.
Again, thank you all for your comments and suggestions. It’s nice to come here for some support and direction.
With my medicine, I eat what I want and I can drink what I want. Your body will love NxStage and it will hate In-center dialysis. According to my Nephrologist, my health for a kidney patient is in the top 1%. I hold a full-time job at night. When I started In-center dialysis, I was 38 years old, I have been an athlete. After the first couple of treatments, I felt like someone had beaten me with a baseball bat. At my job, I walk a minimum of one hour per day, many times, it is more like 2 hours per day. If you go to In-center dialysis, you will be living with control freaks, is that what you want? I have played offensive line and I have wrestled as a heavyweight. When they took out the fluid, I have never had so much pain in my life and I can stand tons of pain. Yet, when I asked the R.N. to help me, she said she did not have time. At that point, I thought, “I am outta of here.” If you think I hate nursing people, my mom was an R.N., so is my sister and my aunt.
And if you run into any snags, please feel free to check in with us; we’ll do what we can to help you.