Centers and diets and doctors

Before I started dialysis I was told by my doctor that yes you can do dialysis and work a job. Well I’m in the center now and I was given a time not asked what time line would work best for you. I was told that the early time slots are held for working people. The center opens at (6 est am) and shuts down at (6 est pm). My time line now is (1 pm 5pm 3xaweek) When I asked about time change they told me you have to have a job and get on the list. I told them that I work at home and take care of elderly parent. My question how many of the folks on this board who dialysis work a full time job?

On diets, I have seen 3 dietitians and been given a ton of papers on what to eat and what not eat. What to drink and how much and what not to drink. I’ve seen my test#'s and things to me don’t seem to out line. A tenth of point here or 2 tenths there. Each dietitian seems to have a different veiw on what to eat or drink. Plus the papers I been given say others things. I know that I have to avoid somethings but I feel great . My thing is to avoid certian things that’s common sense. But eat a balance meal and take in water or tea/coffee as thirst is there but don’t over do it. I still urinate 3x a day that I don’t have tx, 2x a day on tx days. Does this make sense?

On doctors I saw post about how doctors seem not to listen, I have the same things. The doctor onlys want to go along by the rules set up by others (doctors I would think) as to how many tx you need. What your dry weight should be. What if your on a diet and what to lose weight. I was on a diet before this started, because my doctor wanted to lose weight. It not just kidney doctors but it seems to me over the years that most doctors are the same in the last five or so years. I’m in Pa.

Sorry I’ve gone on but This board seems to be the only place where people can exchange ideas and information. The people in center, workers take the company line and the people on dialysis for most part seem to be content to be in center. I don’t if that because for most of them this is their first real major medical, or they don’t have the home setup to do home hemo, or partner to help. Some of the people I have talked with feel safe in the center in case something went wrong. That fine, I look at like whatever works for the person.


Bobeleanor :smiley:

I am very disapointed when I hear about units that don’t offer evening hours. I work full time through the Carpenter’s Union - by the way I recommend unemployed dialysis consumers investigate union work - I started working through the Union in 1995 - while I was still incenter.

I’m fortunate that I live in Seattle and dialyze through the Northwest Kidney Centers. All NKC units are open 'til 11pm. Some units offer Sunday hours; some offer Saturday hours. NKC tries very hard to accomodate work. NKC also offers home dialysis in all its forms. I just can’t understand units that don’t support work.

bill i was wondering do you dialyze at home or center and also how many hours

I’ve been at home since 2001 after eleven years incenter. I was always identified as a good candidate to dialyze at home but until my provider started offering more frequent home hemo I didn’t see enough of an advantage. I started out on the B Braun with a helper dialyzing for - if I remember right - 3.5 hours 5 or 6 days a week. After a year, once the PHD received its FDA approval, I switched to self-dialysis and the Aksys.

I’ve done just about every combination of 5 to 7 days a week and 2 to 8 hours a treatment over the last 3.5 years. Currently I try for 6 days a week for three hours at a time but tonight I will run for two hours - I had a 7:30 meeting this morning and I have an 8am meeting tomorrow, both volunteer activities which meant I had to stay late at work today and will again tomorrow - I can run for two hours instead of three because I will be dialyzing 7 days in a row.

I took Thursday off last week and will take Friday off this week so using the Scribner HemoDialysis Product (HDP) as my yardstick: this week I’ll be multiplying my average run length by 49 instead of 36 so to reach my target HDP (over 100) I can have an average run length this week below 3 hours. Then after taking Friday off I’ll dialyze Saturday and Sunday morning then again Monday night so really I’ll be taking half days off.

I enjoy the flexibility of self home hemodialysis.

thanks bill for that infomation

Bobeleanor, I hope you consider home dialysis – either home hemo or PD. If you have things you need to do/want to do, choosing a home treatment makes it much easier to plan your dialysis around your life instead of the other way around.

Even if a clinic prioritizes shifts for working patients or students – which is a good thing to do so people can keep their jobs, patients may have other important responsibilities or transportation needs that would require that they have certain shifts.

I just looked at the last 3 years of Network Annual Reports. The number of clinics with shifts after 5 p.m. have been steadily dropping. In 2001, there were 969, in 2002 there were 938, and in 2003, there were 870. As of 2003, fewer than 20% of clinics offered shifts starting after 5 p.m. Even if you had a shift that started at 5:15, you’d probably have to miss some work (or go in early) to get to the clinic in time. I’d love to see more clinics – not fewer ones – offer shifts starting later than 5 p.m., but in any case, having more clinics offer training for home dialysis would be terrific!

Yes I’m making plans to home hemo. I’ve been to the center where the training would be done and saw the machines. I’m looking at the nxstage. I live in ranch style house and it just my wife , me and my 87 yr old mother. My wife works full time and I take care of the house( shopping laundry meals etc). Iwas born with spina bifida in 57, and have taken care of myself over the yrs. I was working a full time job up until 98 and a good job. One of the things i love most is my quiet time. But quiet time is a curse word in the center. As for more centers training for home hemo I think is a pipe dream. The companys have no reason to open more centers to train people on home hemo. The center I’m in seems to only want to put the fear of all the things that can go wrong. They say we should take a more active role in our care but when you do or question them they fall back on all the things can go wrong. The big problem in our center seems to short staffed. Maybe if the center was staffed right , techs or nurses might have time to work with those that want to learn more. I don’t blame the staff or the company I can see there side too.
bob :smiley:

Actually, the growth in new home hemo programs is faster now than the growth in the number of new clinics. I think there is great interest in home dialysis in general and home hemodialysis in particular.

When you learn to do home hemodialysis, you learn handle things that could go wrong and your practice them. You don’t have to depend on someone else to handle a problem for you when they’re all busy and may not see you’re having a problem or they don’t believe you when you say your have symptoms, or don’t let you touch the machine, or (I could go on and on). I worked in 3 different clinics for 18 years so I’ve seen problems happen in-center. I’ve also seen nurses do things in training to set up machine problems so you have to deal with them (power outage, water outage, etc.).

Besides…It’s not like you’re sent home where you’re totally on your own. When you’re home you have a manual tht has how to take care of problems and phone numbers of experts to call – your nurse, your doctor, and the company that made your machine.

Which is it? Do you like being in control (taking responsibility) or do you like having someone else in control over you (turning over respondsibility to someone else)?

Devil’s advocate time…

I have to say, I don’t see it at all from the perspective of “being in control (taking responsibility) or do you like having someone else in control over you (turning over respondsibility to someone else)?”, nor of patients adjusting there own dialysis prescription to deal with symptoms they might have. The latter would seem downright dangerous and irresponsible to me. Training for home hemodialysis doesn’t make you a doctor or a dialysis nurse. It makes you an operator of the machine.

Personally, I didn’t opt for daily home hemo because of control issues, but rather for the health and dietary advantages - and you get those because of the daily aspect, not because it’s at home. That’s where the big payoff is.

You do gain some control in terms of timing, but, it’s still a relatively narrow window within which you have to do your own dialysis, and, you have to motivate yourself every single time rather than just showing up. Whatever little control you get that way is more than offset by the work you have to do, receiving, storing and ordering your supplies, remembering how to deal with various little emergencies than can occur, etc.

Just like when first having to make the choice between hemo and PD, the choice between conventional hemo and daily home hemo should be made with a clear and full understanding of both the advantages and disadvantages. It’s not a panacea, and it’s not a rescue away from dialysis. People who approach it that way have unrealistic expectations.

People who already have a chip on their shoulder about the doctors, nurses, or what have you, are probably the least suitable candidates for home hemodialysis.

Pierre, For me it was a “hugh” control issue. During the time dad was in center I lost over 20 pounds and developed IBS. At the time I didn’t realize it but it was brought on by nerves. The lack of having control over time we dialyzed, the lack of information given about what was going on, the minor errors just got to me. I know we just run the machine but there is more. Taking care of your own access etc. removes the questions as to whether things are being done as clean and as efficiently as possible. “Big relief” Being responsible for your own dry weight and adjusting with consent of staff much easier another “Big Relief” Knowing how the access is working by watch blood flow and arterial and venous pressures daily “Big Relief”. Being able to really discuss the labs and treatment with the Nephrologist or nurse instead of “waiting” for the center personnel to decide something is going on
“Big Relief.” Not having different staff every treatment “Big Relief”. It is really important that there is a big difference in the health benefits. However in my case control was equally if not more important.
Imagine living in a rural area with the closest dialysis center 45 minutes from your home and having treatments 3 times a week. No public transportation and the patient suffering with hypotension. Someone has to drive (me.) Now imagine the closest major hospital being 2 hrs away from home. Now imagine someone else in the family needing medical attention at the hospital. How do I drive them 2 hrs away and still drive to dialysis 45 mins away plus the time spent on the machine and 45 min. to get home. I had to have an operation and it was a hassle. They only performed surgical procedures on a dialysis day. I will never forget the
despair I felt not being able to live my life. 3 days I week I couldn’t make an appointment to get my hair done, go shopping, make dental, eye or medical appointments, work or take my mother, or significant other to any of their appointments. Forget those relaxing lunches with old friends they didn’t exist. When you schedule everything in your life on non-dialysis days your whole week is taken up with appointments and their is nothing left for you. If having control means responsibility (and it does) I’ll take it any day. I would do home dialysis even if the results were the same as in center just to offer dad and I the priviledge of being able to control the time and place the treatments take place. I don’t even think you can imagine what families in our area go through for in-center treatments. Husbands and wives get burnt out from the drive to center and waiting for the treatments to end. Husbands and wives loose jobs because there are 3 days a week they can’t work. The economic status drops to the poverty level in a matter of months. I haven’t met a happy spouse yet. It still isn’t better because the people in this position still don’t have any hope of control as no- home hemo programs are available yet. Although one is being worked on. I was VERY VERY fortunate because I could AFFORD to get dad out of the area where there was a program. And it cost big time, over 1 month of living in a motel so I could train. Not to mention all the meals during that time. It still has a cost as every month I drive 550 miles in 1 day to make clinic visit but 1 days a month is a whole lot better than loosing 3 days a week every week. I am sorry for the rant here but having lost control over our lives once puts me right on edge if someone even suggests it may not be important.

It’s a different situation. You are the caregiver with a lot of responsibility. That’s very stressful, indeed more than most people would realize, and maybe even more so than it is for the patient. In fact, I’ve always admired you for it. I can understand your point of view.

I’m looking at it from a totally different point of view. I’m the patient, I drove myself to and from the dialysis centre, I live in the city not too far away from the dialysis centre. It was a very nice, clean, large dialysis centre, with very good follow up on health problems. Never any low BP issues. I had a good rapport with the nephs and nurses at the centre, and I still do whenever I have to go there (like for the regular Transonic).

I actually didn’t mind going to the centre. In fact, I kind of enjoyed the conversations with other patients, and with the staff, and I almost miss that at home. In some ways, I even enjoyed the time away from home. I kind of thought of it as free time. You would think from reading things on forums like this that dialysis centres would fit right into a 1950’s black & white horror B movie. Maybe some, but that wasn’t my experience at all.

Moving home for me was entirely an issue of better chance for long term health while waiting for a kidney transplant (in my view, mainly bone and cardiovascular issues), and for the great pleasure of having a more normal diet. The really big advantage for me has been the ability to return to a more vegetarian diet.

I also think it has potential to extend fistula life, not so much because I’m doing the needles, but because of the buttonhole method.

Not that I’m necessarily contradicting other people’s views, but I still don’t think of daily home hemo as a panacea that solves all problems, no more than I would think of a kidney transplant in that way.


Interesting Pierre you mention motivation, Just thinking about driving to the center 45 min and waiting and knowing after breakfast the day is mine gets me motivated to set up the machine, take care of supplies etc. with a smile on face and a calm I never had when dad was going in center. It’s not that I thought the center was bad but I had to worry about deer hitting the car, winter roads. rescheduling plans due to dialsysis. You are correct home dialysis doesn’t solve everything. It is time and responsibility. Another thing I think is missed is because home patients with more dialysis do feel better they contribute more to helping other family members with life’s daily tasks. Those little things we don’t think about taking out the garbage, giving someone a ride when their car is being inspected. Picking something up at the store. Going to places with someone to offer them company, holding a ladder things they were to tired to do when on in-center treatments. I agree with both Beth’s post and yours. Consider control and consider the health benefits but from my point of view control is an issue which is of equal value to the health benefits. It may not be equal if you are single but when a family is involved it is important to consider the impact on everyone. It may not be as important for all family members to have control as it was for me. But if they think the dialysis schedule won’t impact their life… thats denial.

I like analogies – in regard to the control issue consider dialysis is like driving somewhere. You could drive yourself, ride shotgun while a loved one drives (that’d be you Marty) or you could take the bus. Which method you’d choose would depend on a lot of factors.

What is the bus like? Are the seats comfortable? Is it quiet? Do you have confidence in the driver? Is the schedule convenient or is there just one trip a day?

What is your car like? Do you like driving? Is there someone around who would drive you? or at least ride along?

I also like the driving analogy because imagine explaining to someone who had never driven (or seen a car/road system) before what it took to drive. It would sound impossibly complicated and dangerous. There are so many things that could go wrong while driving a car, so many things to keep track of, that many people would say forget it … I’ll take a bus and leave the driving to a pro.

However, it is clear that growing up in N. America we saw people driving our whole lives, there was no question that when we had a chance we too would drive. Sure it’s complicated and there is an element of danger but we knew we could do it. We saw people around us driving. We could understand the clear advantages and indeed - after a while we learned to do it easily, without thought and the bus became just a backup option or a handy way to get around while traveling.

There are some nice buses out there – but I prefer to drive myself if given a choice.


Thanks so much for all your input.

For me it is about the fact that I’ve always taken care of myself at least back to the age 7 or 8 sure my folks help along the way. But I went to school and and got a full time job after High school( worked pt while i was in school) Once I got to 18 I was on my own.

The biggest biggest problem I have with the centers is they are controlled by one company. We who live in SE Pa. at least don’t have any choice.



Excellent analogy!!!

Speaking of analogies, I would say operating the machine I use at home is much more like learning to fly a plane than driving a car, although I do refer to it fondly as my washing machine! :wink:

When I first started training, I compared it operating a steam turning in the engine room of a ship, where a bunch of sailors spend their days watching meters and opening and closing valves :slight_smile:


I agree beachy. Like I said I like analogies. I too have used an airplane analogy.

Pasted below is a letter I wrote when the US Senate Finance Committee was looking into complaints from patients about their dialysis care. It’s a pretty long letter, the airplane bit is about half way in - my point was to explain the dialysis unit experience and the disparities I’ve seen first hand. Rereading the letter I think it has held up pretty well - I’ve been to more places (five continents instead of four) and I have more and less responsibility through volunteer activities (now I’m also Chair Elect at NKC and no longer on aakp’s board) - the unfortunate truth is that there are still wide disparities across the United States in the way dialysis is provided; the options people with CKD 5 have available both in modalities and facilities.


September 29, 2003

My name is William Peckham. I am 40 years old. In 1985 I was
diagnosed with diminished kidney function, a condition that I share
with one in nine Americans. Despite intensive medical care my kidney
function continued to decline and in 1988 I had a transplant that
lasted two years. The way in which the transplanted kidney failed
indicates that a subsequent transplant would also fail; I expect to
be on dialysis for the rest of my life.

I started dialysis in Seattle in September of 1990 at the Northwest
Kidney Centers (NKC) - in their Patient Education Unit. When I began
dialysis, I was unemployed and used denial to cope with my Chronic
Kidney Disease (CKD). Through the persistence and encouragement of
NKC staff, I evolved over the years. I learned how to put in my own
needles, how to calculate how much fluid to remove during my
treatment and how the dialysis machine does its job. Now thirteen
years later I dialyze at home 5 or 6 nights a week and take
responsibility for every aspect of my treatment.

In 1995, after being unemployed and unmotivated for the first three
years of dialysis, I began working through the Carpenter’s Union as a
Trade Show Specialist - work I continue today. In 1998 I started
volunteering on the NKC Board of Trustees. Today I continue to serve
and I have additional responsibilities as Chair of the NKC Strategic
Directions Committee and Chair of one of NKC’ Regional Councils (the
Councils support patients at individual NKC dialysis units by
bringing together patients, staff and members of the community). I
began serving on the Board of the American Association of Kidney
Patients in August of 2003. The observations that I am sharing here
are my own – the perspective of a uniquely informed, veteran patient.

I am a CKD success story. Over the years, I have evolved from being
an uninvolved, uninformed and depressed dialysis patient to an
empowered, informed and thriving individual with CKD. However, I
cannot take all of the credit; I have succeeded as a direct result of
the care I receive through NKC. I was able to work because NKC
offers evening hours. I became empowered because NKC encourages
patients to participate in their care as much as they are able. I
was further empowered because NKC wants patients to participate in
their organization’s governance. And last, but not least, I am
thriving medically because NKC offers long in-center treatments and
the option of more frequent home hemodialysis. The quality of my
life has directly correlated to the quality of my care.

I am concerned about the unevenness in the way dialysis is provided
in-center and the unevenness of renal treatment choice. In the
thirteen years that I have been on dialysis I have dialyzed as a
visitor in scores of units across 18 states and on four continents.
I strongly believe that if I lived in another part of the United
States my life with CKD would be very different. I have seen first
hand the disparity in the treatment options offered and the
inconsistency in the dialysis unit environment. Over 80% of the
300,000 American dialysis patients dialyze in-center on a three day a
week schedule. To understand the challenges facing the vast majority
of dialysis patients one must understand the importance and unique
nature of the dialysis unit environment. To illustrate, think of in-
center hemodialysis in terms of something we are all familiar with –
flying. In the best of circumstances a four hour dialysis treatment
is about as uncomfortable as flying (in Economy) for four hours.
Imagine then, if three days a week you had to fly from Dulles to
Denver. That would be inconvenient and uncomfortable but consider
how the atmosphere on the flight would affect your attitude towards

Imagine if on every flight your pilot and crew seemed over worked and
harried, or even worse, confused and unsure of proper procedures.
Remember too, that your evaluation of the front line crew would
inform your evaluation of the vital behind the scenes staff – the
maintenance crew. Imagine a plane without headphones, with each
passenger’s speaker turned to a different station. Imagine that
different alarm lights, at your seat and throughout the plane,
continually flash, beep and buzz and these alarms go unanswered or
are simply muted by the crew. Imagine that the crew, even when
talking about you, talks across the seats and between aisles as if
you are not there. Imagine that instead of individual reading lights
there were banks of fluorescent lights directly overhead, left on for
the duration of the flight. Imagine if for the duration of the
flight you were not allowed any water or food, even if you brought it
yourself. Imagine if you were not allowed to use your laptop or
personal stereo (even after getting into the air). One could extend
this analogy to include transportation to and from the airport, the
boarding process and the feeling that flying is not natural, just as
depending on a machine for life is not natural. All of these things
would make flying much worse than necessary but really that’s not the
worst part.

The worst part is that you are aware of what flying is like on other
airlines; you are aware it is much safer and more comfortable. You
know that some airlines have highly trained, confidence instilling
staff. However, you can not fly any airline, your choice in airlines
is determined by your zip code. Quiet, calm, professionally run
airlines exist but they are not available to you because of where you
live. This is the situation faced by an unfortunate percentage of
American dialysis patients. In my domestic travels, dialysis units
with no regard for patient comfort are all too common; many patients
have to dialyze in units more akin to video arcades then the library
like atmosphere of an NKC dialysis units. As a patient if your zip
code requires you to dialyze in an uncomfortable, unpleasant, unsafe
environment you have just three choices – suffer, don’t go or move.
Moving/changing dialysis units is often not an option, so many
patients are suffering needlessly or worse, giving up.

My experience is that dialysis is a journey; a journey from survival
to health. In too many dialysis programs patients cannot complete
this journey. The journey is hindered due to an inadequate dialysis
dose, a lack of evening hours, poorly trained staff and/or the
neglect of patient education. Issues such as patient dismissal,
standards of care, staff qualifications, staffing ratios and
conditions of coverage must be addressed. Advances in how to best
treat CKD must be funded. The historic decision in 1972 to fund
renal dialysis and transplantation through the CMS ESRD program is an
example of America at its best. The downside of Federal coverage is
that no other payer can reimburse for care beyond what is reimbursed
by Medicare. The United States Congress has the duty to address the
needs of dialysis patients because no other avenue of reimbursement
is allowed under law. I ask that Congress ensure that dialysis
patients receive care that maximizes positive outcomes. I thank
Congress for it’s thirty year commitment to CKD patients; our lives
are, now and for the future, in your hands.

Excellent words Bill!
After reading that and feeling things are much the same the world over, I am drafting letters as we speak to the powers that be in Australia along similar lines.

I travelled down to my training centre this morning to touch base and as I was driving home I realised I had felt so happy to see my nurses/trainers who had given me my life back and commented on how well I looked, but I had hardly dared look in on the in centre patients who were lying deep under blankets staring blankly or sleeping or looking most unhappy or unwell in some cases. There just seemed to be a feeling of "unwellness’’ in the air and the nurses just love it when they seem someone doing so well (touch wood)! I almost felt, I am very ashamed to say, that these patients were not really there or not “real people”,so I could ignore them. I guess this is how nurses feel at times too. I know "there but for the grace of…

I just wanted to avoid that place of “sickness”, even though they are getting the best care given the circumstances, you know things could be so much better for them. So now I am on a writing crusade…


I think I’ve read this before and it’s a terrific account of your experience. Have you ever thought of writing a book?

One thing that I’d like to clarify though is that Medicare cannot and does not dictate what other payers pay. In fact 2 large dialysis organizations charge approximately 8 times the Medicare composite rate. We’ve heard that the average contract between an insurance company and a dialysis corporation is a little over twice the Medicare composite rate. This doesn’t include separately billable drugs which are also billed to commercial payers at a much higher rate. I’ve heard from patients that they get bills showing charges of $20,000 a month or more. Personally, I think this is appalling and I think that it jeopardizes people’s jobs and the jobs of anyone under whom they have insurance plus it puts them at risk of exhausting their lifetime maximum benefit.

Medicare doesn’t pay enough. I’ve written this before, but if Medicare’s payment for dialysis had kept up with inflation it would be about double what it is today.

I just hope that the inflated amount that clinics charge won’t lead the industry to reduce its payment for dialysis or limit the number of treatments a patient can get a month. I read a recent government report that said this might happen. If so, it would lead to more quality of care problems and worse patient outcomes. We need to do all we can to promote appropriate charges and payment for dialysis by all payers so that patients have options for treatment and the quality of care they deserve.