NxStage Pureflow

[Jane]

Bob and Mark,
It made my day to hear your strong male assessments of in-center dialysis. No apologies necessary for me, Bob. I have never understood all the patients (captives) who wimp out and take the abusive behaviors that go on in most dialysis clinics. After my very first day of in-center dialysis, I said to myself, “there’s something majorly wrong with this picture!!!”.

I don’t know how I withstood that dysfunctional environment as long as I did. It was quite a lesson on life as to how rotten medical ppl can be to patients when they are inadequately trained and instructed to withhold true care due to the greed of clinic ownership. Every person afflicted with kidney disease who reads these posts should strive to get into a home program if they want to save themselves years of problems and abuse. But like I said, most patients I met in dialysis seemed to feel right at home in the dreary environment. I remember I used to think that most of the nephs, other professionals and techs were so mean-spirited, that I was glad I didn’t grow up in their families! Sadly, most patients must come from dysfunctional families, too, as they acted like doormats and praised those staff who were crude and rude.

In each clinic I was in, there was maybe one or two staff persons that were the exception to the rule- that really cared and acted kind. I never thought I would go to prison, but that’s exactly where I went when I wound up in in-center dialysis. Life is so much better now that I have flown the coop. But in a way, I’m still in prison, because I still have to deal with dysfunctional staff from my clinic, the supplier and the machine company who do not do their jobs right. But it is 100 times better doing dialysis at home away from cold types and control- freak bullies.

Unfortunately, when one has a chronic illness, ones life is never ones own again. Unless one can find a truly good clinic where staff act professional, the best one can do is get in a home program and be as independent as possible. It’s like anything else in life- poor associations will bring you down. The medical world, especially dialysis clinics, has its share of looney tunes. For any patient who wants to regain their health and complete their goals, if your clinic is not professional, try to find one that is, and if you can’t, get as independent as you can in a home program where you have as little contact with them as possible. It’s sad that so many clinics are dysfunctional, but that’s the way it is. Only the strong rise above the circumstances. Make a plan to get into a home program and stick to it = FREEDOM.

[Rich_Berkowitz]

[QUOTE=catwoman;16422]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]

Let me try to get the thread back on point. Catwoman, you asked some specific questions and I’ll try to answer them one by one.

First, you state that it takes 6 - 8 weeks to learn how to use the NxStage System One and PureFlow. They are two different machines. The System One, or cycler, is the actual dialysis machine; the PureFlow produces the ultrapure dialysate from tap water. For me, it only took three weeks of training. This was after three years of in-center treatment. DId the prior in-center experience help? Yes. But only to the extent that I had already become familiar with the dialysis process. I had never self-cannulated before, nor had I ever removed my needles after treatment. Those two thing were my greatest concern. Learning to use the NxStage machine is quite easy. However, you won’t learn everything until you’re already home and get some miles under your belt, but there’s other NxStagers there to help.

How long did it take any one of you to get back on your feet? I never got off of my feet, except when lying back in my comfortable recliner. The imnportant thing is to go into dialysis with a positive attitude, and I can tell you’re already doing that.

Were you feeling better after a certain time? You should feel better immediately. When I fisrt went on dialysis, it was because I asked to. We were planning on me starting later in the year, but I was beginning to feel so tired that I didn’t wait for the original plan of having a fistula placed. So I started in-center with a catheter and got my old energy back. It wasn’t until later that the conventional 3xWeek 4 hour tx drained me completely. As you’ve probably heard from others, CHD can be a real downer; quite frankly it’s a slow death. But home hemodialysis is a way to live a more healthful and productive life.

My advice, if I may, is to have the fistula put in before starting training. That way you can learn to self-cannulate from the beginning. It only takes about eight weeks for a fistula to mature in order to be usable.

Don’t be afraid of the 6 time per week you’ll probably need to treat; it sounds like a lot, but you’ll quickly fit it into your life and it will become normal. I usually am a proponent of one doing in-center first to learn to hate it enough that they’ll want to go home. But I sure wish I hadn’t done three years in-center first. I’m sure I wouldn’t have had a heart attack (driving home from in-center dialysis), nor developed my neuropathy. I surely would be healthier than I am now, and I feel like I’m doing pretty good. I hope this answered some of your questions.

[nocturnaldialysis]

Well said, Rich Berkowitz.

And, in addition … a small, general point …

There ARE docs out there (somewhere) - and more than perhaps you realise - who are sympathetic to your cause. Not just that of home dialysis, but of better education and of patient respect and support. Try not to lump all docs, professionals and clinics into the ‘too-hard basket’ … far more than you know do care deeply and are just as hurt and saddened by the brutality of some of the processes that seem to have become ‘modern dialysis care’ as many of you seem to be. MEI and others are trying to lift the bar. But they need help, not negativism. I would love to see the day when all those who care united as one … not, as now, splintered into small (and thus largely ineffectual) groups … to take a united voice on behalf of all dialyzors (see, Bill, I listen) to the steps of your Capitol.

Nocturnaldialysis

[NDXUFan12]

[QUOTE=catwoman;16456]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.[/QUOTE]

Dear Catwoman:

If you are using FMLA leave, it is against the law for them to replace you, lose your job, hours scheduled to work, salary or hourly rate, or benefits. In addition, dialysis affects a major life condition, please read the Americans With Disablities Act(1990). If you have any more questions, read the U.S. Department of Labor website, take it from a former police officer.

Mark

[NDXUFan12]

[QUOTE=Jane;16458]Bob and Mark,
It made my day to hear your strong male assessments of in-center dialysis. No apologies necessary for me, Bob. I have never understood all the patients (captives) who wimp out and take the abusive behaviors that go on in most dialysis clinics. After my very first day of in-center dialysis, I said to myself, “there’s something majorly wrong with this picture!!!”.

I don’t know how I withstood that dysfunctional environment as long as I did. It was quite a lesson on life as to how rotten medical ppl can be to patients when they are inadequately trained and instructed to withhold true care due to the greed of clinic ownership. Every person afflicted with kidney disease who reads these posts should strive to get into a home program if they want to save themselves years of problems and abuse. But like I said, most patients I met in dialysis seemed to feel right at home in the dreary environment. I remember I used to think that most of the nephs, other professionals and techs were so mean-spirited, that I was glad I didn’t grow up in their families! Sadly, most patients must come from dysfunctional families, too, as they acted like doormats and praised those staff who were crude and rude.

In each clinic I was in, there was maybe one or two staff persons that were the exception to the rule- that really cared and acted kind. I never thought I would go to prison, but that’s exactly where I went when I wound up in in-center dialysis. Life is so much better now that I have flown the coop. But in a way, I’m still in prison, because I still have to deal with dysfunctional staff from my clinic, the supplier and the machine company who do not do their jobs right. But it is 100 times better doing dialysis at home away from cold types and control- freak bullies.

Unfortunately, when one has a chronic illness, ones life is never ones own again. Unless one can find a truly good clinic where staff act professional, the best one can do is get in a home program and be as independent as possible. It’s like anything else in life- poor associations will bring you down. The medical world, especially dialysis clinics, has its share of looney tunes. For any patient who wants to regain their health and complete their goals, if your clinic is not professional, try to find one that is, and if you can’t, get as independent as you can in a home program where you have as little contact with them as possible. It’s sad that so many clinics are dysfunctional, but that’s the way it is. Only the strong rise above the circumstances. Make a plan to get into a home program and stick to it = FREEDOM.[/QUOTE]

Dear Jane:

Having worked as a police officer, I do not deal with abusers or jerks. When certain individuals decided after 5 months of a Pure Flow machine not perfoming correctly, they were not going to help me fix it, they received a very strong dose of foul language. I am not kind to people that abuse individuals that cannot defend themselves. If you met me, you would never believe in a thousand years, that I am on dialysis. I am 6’2", 250, work a full-time job, play sports, swim, and I do everything a healthy individual would do, you would not have a clue. I really like the DaVita nursing staff, they are good people. Believe it or not, my grade school principal was named Jane. She is very near and dear to my heart. My nephrologist, Dr. Stephens is an outstanding physician. If someone from the clinic did something to one of his patients, look out. In this Nephrology group, abuse is tolerated. If you have any questions or comments, please feel free to email me at NDXUFan@aol.com or post on the board.

Mark

[NDXUFan12]

[QUOTE=Dori Schatell;16448]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.[/QUOTE]

Everyone’s life is worth living in the eyes of God. In my humble opinion, our society has become a culture of death. In other words, we do not want to be bothered by people that are sick, homeless, or any other type of issue or problem. Jesus stated, “As you have treated the very least of my brothers, so you have done unto me.”

Mark

[Beth_Witten_MSW_ACSW]

[QUOTE=catwoman;16456]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.[/QUOTE]
If you’ve worked for the company long enough and there are enough employees, you could take use the Family & Medical Leave Act to take up to 12 weeks of time off in increments as small as the company accounts for time. The company could require you to use any vacation and sick time you have first. You might want to schedule your access surgery before a holiday weekend so you have to take as little time off as possible. The training for home hemo using the NxStage System One and Pureflow is seldom more than 3 weeks. Because it takes time for a fistula to develop, the goal would be to have several months between getting a fistula and starting dialysis.

Assuming this is the sequence of events, you would have time to prove to your “control freak” boss who may feel out of control because he is likely making assumptions that your health will adversely affect your ability to work which could reflect badly on him. On the other hand, it sounds like your goal is to keep working and keep doing a good job and prove him wrong.

Some patients take short-term disability leave to get used to dialysis. The Family and Medical Leave Act allows an eligible employee to take 12 weeks off a year in increments as small as the company’s time accounting system allows, so if you need to take a few hours here and there, you can spread that 12 weeks out over months. Another thing that you may be able to request to avoid taking any more time than absolutely necessary is to ask to work different days/hours or to take work home. Here’s info on the FMLA;
http://www.dol.gov/dol/topic/benefits-leave/fmla.htm

I think there is a misperception that has been projected in the media in the quest for more organs for donation that people on dialysis are in need of (or just received) a “life-saving” transplant. How many stories have you seen that included this phrase and how many times have you seen someone on dialysis in a clinic vs. at home? Kidney transplants can be a good option for people with kidney failure, but seldom are they “life saving.” Someone is not generally on death’s door when he/she gets a kidney transplant. In fact, people need to be in otherwise pretty good health to get a transplant. Because the media talks about dialysis patients “suffering” from kidney failure and shows them on in-center dialysis, employers (and patients themselves) believe that someone with kidney failure will not be able to be productive and will need to take disability. Personally, I hope to see more patients take advantage of home dialysis so they can live with (and not “suffer” from) kidney failure.

Catwoman, I hope that are able to do the treatment that you want and are able to continue working. BTW, if you feel that your boss is discriminating against you, you can report him and your company to the Equal Employment Opportunities Commission (http://www.eeoc.gov). Your boss may not be the owner of the company, but he is a representative of that company and if his actions are discriminatory, the company could be liable if you took legal action.

[catwoman]

Beth:

My company offers short term disability which is 2 months. My boss is willing to extend the disability to two more months = 4 months. If I go with FMLA, I don’t get my benefits and I don’t get paid. With short term disability, I still get my full company benefits and 66 2/3s of my pay when I go out.

Yes, my boss is afraid he will be stuck doing crap work - the same crap work that I do every day to cover his butt. So, he has given me an altimadium to get back to work in four months time or he will replace me - put me in different position and a lesser paying job should I return at a later date. The company has a right to do that if I do not return within the time they have given me.

Thanks Rich for your clarification of the NxStage systems. I want to go with the Pureflow SL system - the one that looks like a small end table with the cartridges. I hope to get my fistula scheduled soon and then wait about 3 months to get into a training program with NxStage.

[Gus]

In my case 14 day training and you should start feeling quite good immediately after dialysis, but takes maybe a week or two till adjustments to your regimen are made. Everyone varies but in most cases you should expect to feel very good and be up soonish.

[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]

Hi Folks

The many Drs and I take it nurses ,soc worker ,techs who are sympathetic to our cause I guess have a higher cause. Making ends meet. Which has a funny way of keeping the mouths of those who are sympathetic shut. Rich pointed out how his Dr fought for him. I too yrs ago had a Dr who did everything he could for me, which is why I’m sad today to see or at least hear all quiet on the western front. I don’t lump all into one basket, I think if all the Drs etc were the same we would hear a very loud outcry.

[QUOTE=nocturnaldialysis;16463]Well said, Rich Berkowitz.

And, in addition … a small, general point …

There ARE docs out there (somewhere) - and more than perhaps you realise - who are sympathetic to your cause. Not just that of home dialysis, but of better education and of patient respect and support. Try not to lump all docs, professionals and clinics into the ‘too-hard basket’ … far more than you know do care deeply and are just as hurt and saddened by the brutality of some of the processes that seem to have become ‘modern dialysis care’ as many of you seem to be. MEI and others are trying to lift the bar. But they need help, not negativism. I would love to see the day when all those who care united as one … not, as now, splintered into small (and thus largely ineffectual) groups … to take a united voice on behalf of all dialyzors (see, Bill, I listen) to the steps of your Capitol.

Nocturnaldialysis[/QUOTE]

thanks
Bob Obrien

[Cathy_S]

Hi Catwoman,

Sorry it took me so long to respond. I started dialysis as a home hemo patient in a training center. I drove myself both ways and it was 45 minutes away. That should give you some idea how you will feel.

Training will probably only take about 3 weeks, the cycler and pureflow systems are so easy that many of us with kids have them make the dialysate in the pureflow and many can even set up the machine.

I would immediately get a fistula. I had mine for almost two years before I actually started dialysis so it was really ready and made dialysis easier. Even if you have to get a graft, Nxstage can be used, but you can’t buttonhole.

I sincerely hope you can start with home hemo. I am one of the only people I know who started on home, but I think it is more and more common.

If you have any specific questions just ask, I will try to answer more promptly in the future.

Cathy