Quality of Life

[MooseMom]

How would you describe your quality of life on dialysis?  There are all kinds of numbers that measure this and that, but there's no real measure for quality of life.  How would you define it for yourself?  I know that life on D isn't as "good" as life without having to have D, but does D enable you to do the things you want to do?  Or do you feel that dialysis itself has disabled you more than, well, ENabled you?

Does your neph or anyone at your clinic ever ask you about your quality of life?  Or is this a side of treatment that you feel goes entirely unnoticed?

Thanks for your replies.

[jbeany]

Okay, I had an answer for you.  Then my kitten stepped on the key board.  Here we go again.  (She's now standing on the printer and just pressed the copy button.) 

I think a lot of this depends on what you liked to do before D.  If camping and hiking for a couple of miles of day is your ideal way to spend a week, then going on D is going to be harder for you.  If you travel far from home a lot, that's going to be a lot more complicated too.  If you are a foodie, and you spend all your free time involved in wine tastings and preparing and eating gourmet dinners, the diet and fluid restrictions are going to put a crimp in your dining habits.

My two favorite hobbies are reading and crafts.  D didn't change that much at all, although setting up at craft shows got a bit more complicated.  I read even more than before when I was doing in-center D, since I never could sleep well at the center.

In center is a huge time suck.  Doing it a home was a lot better for me because I could schedule it around my life, not the other way around.

My social worker asked all the questions about coping with changes and quality of life, not my neph. 

I sometimes felt like D was simply enabling me to stay in a stationary position, waiting for the transplant to change things for the better.

[chattyKathy1959]

Quality of life for me on Dialysis is difficult to measure. On my good days, I am thankful, and grateful and count my blessings, but on those horrible days, I really sulk and yes, feel sorry for myself. I am one of the ones who feel horrible after Dialysis and I mean horrible, I don't feel normal until the next day. I have dealt with hair loss, and anemia, so this has affected my quality of life. The only good thing has been making wonderful friends at the center, these are people I never would have met if it weren't for Dialysis and this has improved my life alot.  Overall, I do hate this disease, but it's what I have been given so I'll try to get by the best I can...By the way, my neph has never talked to me about my life,but my social worker always listens and seems to really care.

[Restorer]

At my center, there's an annual questionnaire (the KDQOL - Kidney Disease Quality of Life survery) that gets scored and compared to your previous questionnaires to see what your quality of life is and how you're dealing with everything. It gives you scores on physical and mental health, burden, symptoms, and effects of kidney disease on your daily life.

As far as my quality of life, I feel like my quality of life is pretty good for someone on dialysis. Compared to what I want to do if I were healthy, there's no comparison. Just because I'm on dialysis doesn't mean I should compare myself to the average dialysis patient, because then the dialysis companies are dictating my quality of life. I'm far below where I want to be.

It's not a question of "has dialysis disabled me more than enabled me." Dialysis has not disabled me more than I'd be if I had refused dialysis, because dead is pretty damn disabled. Hemo has disabled me far more than I was on PD, and ESRD in general has disabled me far below when I was healthy.

[Gerald Lively]

Dialysis trashed my life.  It absolutely ruined everything I was doing at the time.  It got so bad that I asked myself if I was living to do dialysis or was dialysis allowing me to live?  I hated it.  It took an hour to get to the dialysis center, four hours of treatment, a half hour to de-hook and another hour to get home.  The next day was spent getting over the previous day.

Before I decided to kill myself, I tried the methodology I often use when faced with a seemingly insurmountable problem; I educated myself, challenged the Nurse and Doctor, tested my water drawdown and arrived at my own treatment plan which was in effect for about two months before I demanded a blood/urine test to see if I needed to be there at all.

I think they were pleased to get rid of me.

I have been off dialysis for a while now and I am about to go under radiation for Lymphoma.  Prognosis is good.  I will not ever, ever go back on dialysis.  You can drag me kicking and screaming but I won’t go.  Never!!  Nope!  Unless I get sick again.

[billybags]

It is not just dialysis that  shi*s your quality of life up, it is all the other things that go with it. Heart attacks, infections, hernias, pills for this, pills for that, its an whole combination of things. Yes they say dialysis to live but I think most of us are living to dialysis. Quality of life out of 10,    5 on a good day,   4 on a bad.

[brenda seal]

We had such high hopes that dialysis would improve Laurie's quality of life when he began in February - alas it has just not happened  . There have been numerous complications and interuptions to his treatment . I was shocked and horrified last week when we got the latest blood test results and his creatinine was worse than it has ever been at 780 . He goes into hospital tomorrow to have the hernia repaired . He does not have a social worker and nobody else has asked how he is coping . He is hanging on to his sanity by a thread I fear . We had to ring technical support a few nights ago as the blasted machine kept alarming and we could not get it past " priming " . Luckily the guy was really supportive and kind because Laurie was on the verge of tears of despair and ready to chuck the thing out of the window !
Hopefully the hernia repair will be the last of the complications and he will begin to feel benefits of dialysis as I don't know how much more he can take .
So as not to alarm or disillusion others beginning on this journey , I feel I should point out that Laurie has several other issues  with his health other than the kidney failure .

[WishIKnew]

I'm pretty down today, so ask me again tomorrow and I may change my mind, but today I say dialysis just prolongs the inevitable.  It's hard on the patient and everyone in their life.  If I had died 4 years ago when I would have without dialysis, my husband and my son and my extended family would have been so devastated, BUT by now they would have found a new normal.  My husband, I'm sure, would have remarried and would not have to be a sex-starved, worry filled, caregiver all the time.  He would be camping and boating and living!  My extended family would still mention me at family gatherings with a funny story or a sad sigh.  They'd tell my son stories about me and remind him how much I adored him.  My son's the one who would have had it the hardest, loosing his mom at 10.  But even he, at almost 15, would have made peace with the reality and would be living.  I mean just this year alone I was in the hospital at the beginning of every quarter of his school year.  He had to watch and worry as I underwent 10 surgeries and so many hospital stays I lost count.  He had to suffer through cancer with me and even the transplant is terrifying.  Not to mention the burden of having a depressed mother.   So, today, I think dialysis just prolongs the inevitable and it would be more humane to all involved to let nature take its course.  Good thing I see a psychiatrist on Friday!

[KarenInWA]

I started dialysis one year ago today, and was on it for a total of 7 months before receiving my transplant. I adopted the philosophy that just because I'm on dialysis, I'm not going to let it win. There was no way in hell I could let that happen, and it didn't! I did HD in-center, and was open to doing HHD if the transplant fell through. I ended up doing a LOT of reading while toiling in that chair, which I enjoyed (I like to say that was the one positive out of the whole thing, since I like to read, but don't always carve out the time for it). I continued to work FT. I enjoyed the staff at the center, which helped my having to be there. I started to feel better after about a month or 2 after I started D, when my hemoglobin finally raised to a "new normal" level.  I took a week off in August and did a day trip or 2 on non-D days. I still went to musicals and concerts. RM visited me, and we did things like hang around Seattle, The Boeing Tour, dined out (including after D), and went up to Canada on my D weekend. I went to Vegas for a 3-day IHD weekend, bookended on each side by a D treatment (I had to hightail it through rush hour traffic to get to the airport after D - that's a 30-mile commute!) I did not let dialysis stop me from living and enjoying life. Yes, it got in the way at times, but that was my new reality. I was lucky in that I dialyzed at a center that was willing to be flexible with your schedule when you gave them enough notice. *That* was a lifesaver for me!


KarenInWA

[cattlekid]

Oooohhhhh.....do not get me started on this BS that they call "quality of life".  Before I started dialysis, I worked full time, took care of my home and yard, enjoyed time with friends and family, volunteered for a local civic organization and had time for hobbies.   I also enjoy food and cooking very much. 

Now, I barely have time for work.  My house and yard are trashed and will be for the foreseeable future unless God grants me a maid and a gardener, neither of which I can afford on a constant basis.  I do pay the neighbor kid $20 every other week to keep the grass cut but that's about it.  Time with friends and family is carved out whenever I can.  Hobbies and volunteerism have gone by the wayside for the most part.  And food and cooking - it's a constant battle to balance what I "can" eat with what I want to eat.

The only advice that I can give you is the path I believe you have already chosen - home hemo.  In-center, the quality of life was at an absolute zero.  You live your life by their schedule.  In-center treatments were so draining for me that treatment evenings were complete losses - that's three days a week, for those counting at home.  The staff was so used to dealing with people twice my age that they just didn't have the resources to be able to help me with the issues that I was facing. 

Now, with home hemo, I am in control (for the most part).  I do my treatments on my schedule.  I know my lab values and I know the boundaries that I can push to allow myself to eat mostly what I want and still keep my lab values in line.  I appreciate not being in the center and being part of their asinine games, that I used to vehemently bow out of as I wanted no part in that childishness.  Just give me my lab values (the entire report, thank you) and let me move on. 

The quality of life survey that they give you is also a bunch of BS.  It tries to brainwash you into thinking that you should be grateful to be on dialysis.   

[Katonsdad]

Having what i feel as being run thru the wringer ,my quality of life is still very good. In 1997 i started Dialysis in 1999 I received a kidnet and Pancreas transplant. 12 yrs later I lost the kidney but the pancreas continues to carry on. I was diagnosed ainsulin dependant diabetic when i was 13  , sp 1975 . That was the start . This affected my eyes , kidneys heart , everything.
My attitude toward these things are as such that I do not let them bother me.  I am alive . i am walking , I am reading , I am volunteering at my sons school.  I am waiting for the next great medical breakthru.
last month a collasped at work  , I had had a heart attack (#2)  and am now walking around with a so called LifeVest defibulator on me incase my heart stops . I am 49 , my attitude is still up.
Dialysis allows 3.5 hrs a day that I can not be bothered ( i sleep , watch Tv and nobo=dy can change that.
I will probbly expire at an early age but I am ta=eaching my son how to live life . You can not dwell on what has happened  , yu must look forward and make your own quality of life.

Katonsdad

[cassandra]

I only now realize that I've been on D most of my life (oh hold if I count my transplant yrs with the 'normal person' yrs its nowhere near that bad. But even those yrs included a lot of surgeries etc., and were a long time ago, so what do I want to compare my quality of life with. I'm sure I have a better quality of life than a lot of people in a worse situation than men(not even just medically).I don't live in some sub-saharan country. Don't live on either of the poles. There is a beautiful sunset at the moment, I just finished my 3' bacardi-cola, had a nice meal (chicken,rice,leeks). Hubby watching TV. Hardly any cramps today. But this is Sunday, Monday will be okay too, cos no checkups for heart, eyes, muscles etc., till 1800 and it starts again. So its no comparison to a 'healthy' life, but its better than being a cow.

If anyone connected to healthcare asks me about quality of life, I get angry, and tell them that I don't want to talk about it, cos it upsets me. I don't mind you asking though, puts it all in perspective for me I suppose

[mcclane]

I'll be brutally honest, since starting dialysis years ago quality of life for me has gone down the crapper.  I've done both forms of dialysis, PD and hemo (not conventional though).

PD wasn't 'too bad', but I use that term lightly.  It did give me some freedom, but I felt that I was always 'clock watching', that is counting down to my next exchange.  I should've have went with the cycler back then but I didn't pursue it.  Going out on weekend nights was tough, as I wanted to stay out late but couldn't because I had to do an exchange.  So my wife and I never stayed out late just so I could go home to do an exchange.  One good thing about PD is that we could still travel, but again I couldn't really enjoy myself due to the fact that I was counting down to my next exchange.  I also enjoy foods of all kinds, so having to be on a renal diet was tough.  All the foods I enjoyed had to be cut out, like cola, orange juice, milk, and fast food.

Doing nocturnal hemo gave me abit more freedom in the foods that I could eat, but my quality of life went downhill fast.  Being connected overnight to a machine that was super finicky was not fun.  I toss and turn alot in my sleep, so being connected by a tube was extremely restrictive for me.  I also never slept well at all, as the machine was loud and alarmed easily.

I made a decision that the hospital never knew about, instead of doing 8 hours overnight (for 6 days) I did 3 hours a day for 7 days.  My bloodwork didn't turn out that great, but I had a slightly better quality of life.  If something should happen, I accepted the consequences, as I value my quality of life over being hooked up to a machine for hours on end. 

There are other factors too that brought down my quality of life (PD and Hemo), one of them is delivery of supplies.  On PD I could at least leave a lock box and the guy would let himself in and put the stuff in the basement, but on hemo I had to be home.  Plus, the tanks for hemo had to be replaced every 2 - 2.5 weeks, it was tough working FT, and then having to take time off to be at home for supplies/tank replacement.  I calculated that if I didn't receive my transplant, I would have used up my whole year's vacation allotment in a very short period of time.  Plus, came bloodwork.  Even though the hospital trained me on how to collect blood for the lab, I eventually didn't do that and booked time at the hospital so they drew my blood (at the same time I would do a dialysis run there), but that meant taking more time off work.

As voiced by other members, I hated dialysis and I hated having that machine and all of its supplies in the house.

[cattlekid]

I used to snarl at the social worker and dietitian in my old center. They would ambush me when I was in the middle of a treatment and would start talking to me like I was either a slow three year old or like dialysis was a gift that I should be grateful to have and that I should arrange my entire life around it.  I constantly told them that they would change their tune if the roles were reversed and they were the one stuck in the chair for four hours at a time.  They were truly simple minded individuals who couldn't fathom that I wanted to keep control of my own life. 

At least now that I am at home, I only have to deal with them on a very random basis.  The new dietitian and social worker still don't have anything useful to offer but I don't have to be subjected to them all the time.

If anyone connected to healthcare asks me about quality of life, I get angry, and tell them that I don't want to talk about it, cos it upsets me. I don't mind you asking though, puts it all in perspective for me I suppose

[MooseMom]

I haven't posted this question for my own benefit or because I want any advice, but, rather, because I have been discussing with various people in the renal community about how to define "quality of life".  ESRD is debilitating and dialysis can be, too, so it begs the question of whether simple survival means dialysis is "working" or whether we should have a more far-reaching goal, such as rehabilitation.  What does rehabilitation look like?  Does it mean returning to school or to work, or does it mean being able to live a fairly normal day with a fairly normal energy level so that you have the desire and opportunity to have a modicum of a social life or family life?

This article from the Wall Street Journal begins to ask these types of question...

http://online.wsj.com/article/SB10001424052702304450004577275911370551798.html

About 20 years ago when my dad had a heart attack, when he got out of the hospital, he was enrolled in a cardiac rehabilitation program.  When my stepfather fell and broke his hip a year ago, he also was enrolled in physical therapy.  In both cases, these men were given the chance to not only survive but also to be made BETTER, to RECOVER and to REHABILITATE.  Is there something similar available to dialysis patients?  Should there be?  If you think so, what might that look like?  Can dialysis patients hope to be rehabilitated only if they are able to take advantage of optimal dialysis, ie, outside of the thrice weekly, inclinic template with which we are all familiar?

An LDO/Medicare is not going to want to invest funds into "more dialysis" if they cannot measure the clinical advantages, but then again, right now we get all sorts of numbers that don't mean squat if you feel like hell. 

I know how D can trash your life.  I saw my mother on D, and I read all of the stories here on IHD.  Can you think of anything specific that could improve what you define as your quality of life?  Would it be more dialysis?  More psychological support?  It seems that social workers are too bogged down with either insurance issues or travel issues, so should perhaps each clinic have a psychologist on board?

It seems that there is a preponderance of clinical evidence that inclinic patients should dialyze at a MINIMUM of 4 hours per treatment and that the "killer weekend" should be abolished.  We've all been expected to accept current practice as the norm, and most of us don't think to challenge it.  But if 4 hr treatments as the minimum and the abolition of the two day interdialytic break became the NEW norm, thus giving you access to more dialysis, do you think that would improve your quality of life? 

How about if there were more clinics that offered incenter nocturnal D programs...if that became the new normal for D clinics, would that be advantageous to you?

I try to draw parallels between ESRD and other chronic conditions, and I am hard pressed to think of another chronic condition whose ongoing treatment is so onerous.  That is not to say that ESRD is the most awful malady in the world; this is not a contest.  But ESRD just seems somewhat unique in that dialysis in and of itself is particularly burdensome.  Any thoughts on this?

Anyway, thanks for all of your replies and I'd welcome even more.  Again, I'm not looking for advice for myself, so please feel free to give honest thoughts and opinions without fear of upsetting anyone.

I do realize that "quality of life" is defined differently by everyone, and I do understand that the more you feel you've lost, the harder it will be to feel like you still can have a good quality of life on dialysis.  The difference in all of your replies in and of itself makes the point that this is hard to measure.

[MaryD]

I would say that my quality of life has improved somewhat since I started PD five months ago.

I have four grades of how I am feeling - bloody awful, OK, good, and bloody fantastic.  I seem to average one or two BA days per months and 15 to 20 BF days.  I deliberately look at a good day and work on turning it into a BF day.

I would rather not be on dialysis, but prefer it to the alternative.  I do not want a transplant.  I am 69, so I've done all my travelling and have a very quiet social life.  My pleasures in life now are my cats, gentle gardening and my textile crafts.  I can't imagine being young and on dialysis - that would be very frustrating.

Since starting dialysis I feel more alive and alert, and I can eat pretty much whatever I want.  I'm doing CAPD.  I was worried about the time I would be losing each day, but I've settled into  a quiet 'exchange' time each time I do an exchange.  The only unproductive time is the 5 minutes preparation time.

Today, I can feel another bloody fantastic day coming on!

[MooseMom]

Mary D, I love your "BF" day vs "BA" day...I'm going to remember your post!  Working to make a good day into a BF day...I like the way you think.

I find pleasure in the "slower" activities of life, too...reading and gardening.  I also really love films, so as long as I will be able to read or watch a good movie while I dialyze, I can find some pleasure in that.  Thanks for your reply; it's very useful.

[Bill Peckham]

The way I would say it is: how is my quality of life with CKD? Starting the clock with my Tx 7/88 I've been stage 5 for over half my life (cassandra just made me realize that) what exactly am I suppose to be measuring my current QOL against? How I felt in high school?

The problem I have with "rehabilitation" is that it always seems to imply another appointment(s), another person to tell your whole story to, another tedious discussion with the social worker. Instead of creating another program that sucks up more time I don't have, I want to make the treatment for my CKD result in the most BF time - I want to maximize the time I am awake, and feeling, if not fabulous, then at least firing on all cylinders. There is no rehabilitating me back to being a urinator. If the system wanted to help me it would work to, as much as possible, leave me alone to do my dialysis while I sleep. Which works pretty well for me.

Develop treatment for severe CKD that impacts my life the least. The least dietary restrictions, the least commitment of my waking hours, the least time in the hospital, the least time feeling sick. Give me a treatment for my CKD that gives me the most BF time, per day, per year, per life.

[cattlekid]

More dialysis will not improve my quality of life. I get sick of the more dialysis bandwagon. Everyone should be able to tailor this treatment protocol to what works for them. If I with my residual function feel good with less dialysis and can keep my labs at acceptable values then it should be between me and my neph as to how much and when I dilate. But the clinics don't want that because they can't staff for it. So we are stuck with one size fits all.

Psychologists don't really fit into the clinic model weather.  In a clinic, your business is everyone's business because you are all jammed in one treatment room. Rounds are done with other patients no more than two feet away on either side. Not a place where i would want to air my dirty laundry.

Sine you mentioned other maladies, I'll go there. I have to preface by apologizing to any cancer patients here because I do not want to make light of cancer. I just can't help but compare and contrast.   Cancer centers are usually state of the art with every amenity available. Dialysis centers can be dingy and run down and lacking in any sort of amenity. When my mom was diagnosed with breast cancer, she had all sorts of choices of complementary therapies available to her. Yoga, massages, etc all for free. Dialysis patients don't get access to shit.  I have yet to figure out why this is.  Maybe we have to find a way to get the profit margin out of it so the dialysis providers have some sort of incentive to treat their patients like human beings not bags of bold and fluid with arms.

I know how D can trash your life.  I saw my mother on D, and I read all of the stories here on IHD.  Can you think of anything specific that could improve what you define as your quality of life?  Would it be more dialysis?  More psychological support?  It seems that social workers are too bogged down with either insurance issues or travel issues, so should perhaps each clinic have a psychologist on board?


I try to draw parallels between ESRD and other chronic conditions, and I am hard pressed to think of another chronic condition whose ongoing treatment is so onerous.  That is not to say that ESRD is the most awful malady in the world; this is not a contest.  But ESRD just seems somewhat unique in that dialysis in and of itself is particularly burdensome.  Any thoughts on this?

Anyway, thanks for all of your replies and I'd welcome even more.  Again, I'm not looking for advice for myself, so please feel free to give honest thoughts and opinions without fear of upsetting anyone.

I do realize that "quality of life" is defined differently by everyone, and I do understand that the more you feel you've lost, the harder it will be to feel like you still can have a good quality of life on dialysis.  The difference in all of your replies in and of itself makes the point that this is hard to measure.

[cattlekid]

Ack, I typed this on my iPad. Sorry for the inadvertent typos.

[paris]

When I think of quality of life with kidney failure, I think of Stephen Hawking and his "quality" of life.  He is an amazing man.

[Gerald Lively]

cattlekid:  Having just been through dialysis and cancer infusion, I can state with absolute certainty that you hit it right on the button. The cancer center (Infusion)was glorious with staffing and decor, the dialysis center was depressing at best.

[amanda100wilson]

My Q of L improves greatly when I have control over my life.  HHD certainly helps with that.  how I view whether I have a good Q of L also depends on how I feel physically.  for the pastfouryears I struggled on with PD, and my Q of L was the lowest that it has been.  I have been CKD5 for nearly half my life, but during my ten transplant years (incidentally 19 years ago today, I had just received my transplant), my Q of L was the best that it has been since all this started (  and maybe for my entire life since I had a heightened appreciation of what I had). 

As to how centers are kitted out, I am not sure how to fix that.  In the UK a lot of the luxury items are paid for by charities, and I am not sure if this is thecause in the US.  if it is achieved by fund-raising then shame on the charities set up for kidney patients.  there is so much prominence and publicity for cancer charities but so little for kidney related ones.  think that it's just be national organ and tissue donation awareness month.  I doubt many of the general population were aware of this, but hey,anything to do with pink ribbons and the whole world knows.

[MooseMom]

Within 5 miles of where I live, there are THREE "cancer care" centers, one of them is brand spanking new.  I actually attended a lecture at one of them about living with the stress of cancer (I figured that maybe I could glean some benefit), but I am completely unaware of any "renal care" centers other than the dialysis clinic. 

This clinic is on the campus of our local community hospital.  The hospital is always sending me slick magazines about their wellness programs, etc.  Just yesterday I received a fundraising plea, and on the form, there was a place where I could express a preference for where my donation would go...the maternity unit, breast care, cancer care, and two other options that I can't remember offhand, but nothing about renal care despite the dialysis clinic being RIGHT NEXT TO THE HOSPITAL.

I've been in the D clinic, and sure isn't all kitted out like the cancer centers are.

Bill, it sounds like you are describing nocturnal home hemo.

Yes, cattlekid, I agree that dialysis clinics offer little privacy.  Is there any other disease the treatment of which requires you to be in the same room with a dozen other sick people?  Maybe there is...I don't know, that's why I ask.  So, I see your point.  As for the "more dialysis" bandwagon, I suppose we all agree that the ideal would be for each patient to create their own treatment protocol aided by their neph, and I guess the more able and less sick of us have an easier time doing just that.  But for whatever reason, the dialysis population seems to be particularly fragile and voiceless.  It's hard to advocate on the behalf of fellow patients when you yourself are so ill.  And when so much profit is at stake, who do you trust to go to bat for you?

[cattlekid]

I think the reason that the dialysis population is so voiceless is that kidney disease for the most part NEVER ENDS. 

Just look at the progression:  stages of CKD, ESRF, dialysis, maybe a transplant.  Then what?  It's still not a cure and you may experience rejection and have to go back on dialysis and the cycle begins again. 

The world wants miracles.  The dialysis population can't give them miracles.

Then look at the average age of the folks in the dialysis clinic.  I know that in my old clinic, I was approx. 40 years younger than most everyone there.  Not to mention that most of the folks were disabled for various reasons and many were ethnic minorities.  These are populations that already start out in disadvantages.  Like you said, it's hard to advocate when you don't have any advantages yourself to leverage.

The way that dialysis is provided and paid for also doesn't help.  Medicare pays a pittance and since what they do pay goes to a for-profit entity (most often), these entities have no financial advantage to provide anything but the bare minimums to their patients.  Then, they also have a financial advantage to keep people on in-center dialysis.  If they work to get all of their patients that are eligible listed for transplant, there goes their profits out the door. 

How to change all of this?  We have to somehow change the world's perception that dialysis patients are as worthy of attention as those from other more well-known diseases. 

Yes, cattlekid, I agree that dialysis clinics offer little privacy.  Is there any other disease the treatment of which requires you to be in the same room with a dozen other sick people?  Maybe there is...I don't know, that's why I ask.  So, I see your point.  As for the "more dialysis" bandwagon, I suppose we all agree that the ideal would be for each patient to create their own treatment protocol aided by their neph, and I guess the more able and less sick of us have an easier time doing just that.  But for whatever reason, the dialysis population seems to be particularly fragile and voiceless.  It's hard to advocate on the behalf of fellow patients when you yourself are so ill.  And when so much profit is at stake, who do you trust to go to bat for you?