Quality of Life

[ps7910]

Quality of Life on dialysis , 1 out of 10 Im on overnight PD, I work I Dialise thats it , JBeanys comment is so true , My hobbies were kayaking , mountain biking , hill walking and Ive always been very self reliant , Im still breathing but ESRF ended my life I live to work and Dialise to live.I keep going because Ive got a family who rely on me if I didnt I really  dont know if I would bother. No one has ever asked me about quality of life generally the medical proffession tell me that you can live a near normal life , dont know who they are trying to kid, In fact last time I asked to be put on happy pills they didnt even ask why , just prescribed them.

[Gerald Lively]

" . . . the dialysis population is . . .  voiceless . . . "
"How to change all of this? "

Gerald mumbling here, thinking. 
The last time I spent any effort in advocacy was for Women's Rights.  It has been a long long time since then.  As for your comments that dialysis patients do not get better or that there are no miracles in renal failure; I am the exception.  Perhaps I owe all of you something more than my efforts to brighten your days.  I will think on this.

gerald
Old Hippy

Feed me thoughts.

[cassandra]

thanks already GL, and how are you batling with your treatment? Sorry I didn't ask earlier. And thanks MM for asking the QOL-question in the first place. The article you included felt a little bit iffy to me. It feels a bit like the beginning of the discussion about; is it affordable for society to keep your QOL high enough to keep paying for the effort? Like, no we can't afford to pay for all the things to improve your QOL, so we understand if you want to get out, if you fill in this form you can go to that room, and end it all (the feeling I used to get when living in the Netherlands, eventhough most people (healthy) will strongly deny this.

The more, and longer D is floored, compromised by financial incentives. And talking to a psychologist? I've tried, but the disinterest, the ignorance? If the psych has not experienced D themselves, I don't even want to see them.

I don't know about the voiceless issue being the problem either. The transplant community isn't voiceless (transplant -games, tv-adverts) but has it actually changed anything?

The best thing that could change for the better now, would be to ditch the 'One fits all' attitude towards D.

take care all, Cas

But the discussion is good.

[brenda seal]

Quality of life surely is about how much you enjoy your life and that is hard to do when you feel like death warmed up . Although Laurie has had a chronic illness - severe rheumatoid arthritis - for over 25 years , up to the time his kidney function was bad enough to start dialysis , he still enjoyed life . Even after losing his eye and half his face due to cancer , he kept up with his hobbies , continued to do the household shopping , looked after his garden , his birds and his dog and cats and enjoyed the company of his grandchildren . These things brought him joy and made him happy .
Since starting dialysis and all the complications that came with it , he has felt too ill and has not had enough energy to do any of these things . If one is lucky enough to qualify for a transplant , then this at least gives some hope that things will get better . How to continue without HOPE , now that is difficult . Our 16 month old grandaughter put her arms up to Laurie yesterday for him to pick her up and he did not have the strength to lift her on to his lap - he was devastated .
I don't know why some illnesses are afforded more support and sympathy , better facilities , more funding - whatever , maybe the majority of the population do not fully understand the implications of kidney disease - we sure as hell didn't until it happened to Laurie . We just thought OK  , he will have dialysis and everything will be sweet .
Maybe another " awareness week "  you know like mental health awareness or cancer awareness and people can be educated .

[Grumpy-1]

I think everyone's quality of life has been changed due to kidney failure and all the resulting medical and mental stuff that comes with it.  For me, I think I'm in better shape physically than more other here.  Those with other medical conditions beside kidney failure.  BUT my QofL has been changed.  Last Saturday, the day was wonderful and I spent the early part of it motorcycle riding with friends.  BUT - I HAD to cut it short to go do an exchange.  Sunday, was one of my grandson's birthday party and I had to leave early to get hooked to the cycler.  YES my QofL isn't what it used to be.  But I'm still trying to keep going and enjoying what I can do and realize what I can no longer do.  Like all of you, I too have felt the desire to "just walk away" from it all and let nature take it's course and my life.  But I've also realized that I'm not ready to give up just yet.  Too many grandkid's birthdays, Too many roads to ride, too many other things that need to be completed.  So I will continue on.  And I will continue to read and post here, just because it makes me feel better to be among friends who understand.  Grumpy

[MooseMom]

Re the point that ESRD never ends, that is very true, but almost half of all Americans suffer from a chronic, incurable disease.

http://www.cdc.gov/chronicdisease/overview/index.htm

Yet other chronic diseases get more PR than ESRD and dialysis.  I saw yet another ad for yet another breast cancer fund walk, and all of the participants (or at least all the people in the ad) were young or young-ish.  Maybe people on dialysis aren't pretty enough or don't photograph well.  That's meant to be a flippant remark, but I think there is a grain of truth in it.  The truth is that the majority of people on dialysis are older, many being MUCH older, and the optics aren't so great.

That thought lead me to my next thought.  The majority of people on dialysis are either older or of an ethnic minority, and those are two groups who don't have much power in our society today. 

To be fair though, here in Chicagoland, we have been seeing ads on TV from the State advocating donation.  It features a middle aged blonde woman who apparently worked at one time as some sort of tx coordinator and then found herself in need of a kidney.  We went to the movies yesterday ("Chimpanzee"), and this ad was shown before the film.  Also, matchingdonor.com is running an ad I hear every day on the radio ("Do you wanna piece of me?"), so we're not being ENTIRELY ignored. But I can't escape the idea that our PR isn't so great because esrf and dialysis is perceived to be an "old/brown people's disease".  I hate the idea of being ageist or racist, and if my perception is incorrect, PLEASE TELL ME because I do NOT like believing this way.

But then there's Alzheimers.  Old people are the primary victims, but we hear plenty about it.  My local hospital that I complained about has support groups for THAT disease, but then I remember that when you see ads for Alzheimer care, they are aimed at a younger generation that suddenly find their ageing parents need help and don't know where to turn, so those ads always feature younger people.

gl, do you think dialysis cured you of kidney disease?  Sure, in cases of acute kidney injury or certain kinds of chemical poisoning, dialysis can either fix you right up or give your kidneys a chance to recover.  But I doubt that the general public pictures these instances when they think of dialysis. 

There are plenty of groups that aim to give renal patients a voice, but when dialysis becomes a profit-making business, individual voices become muted or else they are hijacked by monied interests. 

I personally am hoping for the day when the current way of providing and receiving dialysis becomes ancient history.  I place most hope in better machines, better technology.  Look how quickly cellphones evolved from bricks to the tiny devices of today that stream video and are also game devices.  But dialysis technology has been stuck in the past forever.  Maybe the new work on the wearable artificial kidney will transform dialysis and will make the whole "spend the day at the clinic" template a relic of the past.

BrendaSeal brings up a good point; I don't think most people have a clue as to what dialysis really means, how it works and how it affects you.  They think, Oh, OK, so your kidneys don't work, well, you can just go on dialysis or just have a transplant, no problem.  It's all so simple, really.  I suspect my husband thinks that way, and he LIVES with me!

[Gerald Lively]

MooseMom:

Dialysis doesn't cure anything. Dialysis bought time so my kidneys could heal themselves.

gerald

[paris]

Cattlekid, you are so right.  Cancer has a 5 yr. status and everyone celebrates when their loved one passes the 5 yr mark.  There is no party for being on dialysis or having a transplant.   2 years, 5 years. 10 years??  We can never say we are in remission.  There is no cure, although the world thinks we are cured  - you look so good, you must feel good too.  HA!

My husbands sister died of breast cancer and a second sister was diagnosed with it 2 years later.  He supports the pink projects, but it even upsets him that everything has a pink ribbon and they get so much support.  He says it is all politics.  I'm not a political person, so I say "yes dear".   

Good post Moosemom.  I worry the private dialysis companies will always hinder the actual production of artificial kidneys.  Wake Forest University has been working on it for years; artificial ones, growing new ones from stem cells.  We need a Steve Jobs type of person for kidney disease.  He advanced his products so far and fast.   There are times I think that kidney disease is the ugly step child of all illnesses.

[MooseMom]

Paris, I know about the research going on at Wake Forest; the "3D printing" of solid organs.  I believe they've done it with a bladder and have actually transplanted it into someone, but a bladder is very different than a kidney!  A bladder doesn't have the myriad of tasks that a kidney does.

And I think you have a point that LDOs have a financial reason to deter any research that gets people out of a dialysis clinic.  But on the flip side, if we had the technology to ease the inclinic burden of dialysis, Medicare might have more money to spend in other areas and the American taxpayer may get a break.  It's not even so much the cost of dialysis, rather, it's the prohibitive cost of hospitalizations that result from poor dialysis treatments and practices that need to be addressed.  Having to spend time in a dialysis clinic receiving sub-par treatment that sends you to the hospital surely doesn't improve anyone's quality of life.

A "Steve Jobs of Dialysis"...what a brilliant idea.  Maybe there is someone out there already who fits that role!  The inventors of the NxStage machine could vie for that honor, just as the team at Wake Forest.

[Gerald Lively]

Advocacy begin with basic knowledge and understanding of the problems.  In that regard I have collected bits and pieces of data and ask you to read and comment.

gerald

Miscellaneous information:

1.    The number of dialysis outpatients receiving Medicare is between 330,000 and 437,000.
2.    Medicare pays over $24 billion for end stage renal patients.
3.    “(Symptoms) usually occur when it’s too late and ... there’s not that much that can be done to reverse the damage.” That’s what’s very sad.
4.    Patients on dialysis, they have to follow a strict diet but very seldom they do.
5.    There are more than 4,700 Medicare approved renal dialysis facilities across the US.
6.    To determine if an ESRD facility is to be certified by Medicare, the State survey agency performs an on-site survey of the facility using the standards in the ESRD CfCs. The ESRD facility is considered Medicare certified and eligible for Medicare payment if the survey finds that a facility complies with the conditions for coverage and all other Federal requirements are met. Medicare payment for outpatient maintenance dialysis is limited to facilities meeting the ESRD CfCs.
7.    Examples of a bad dialysis clinic per inspection by the State of California:  Records of state inspections at the Temple City and Azusa clinics reveal a multitude of problems, including improper sanitation of equipment, dirty conditions, and a lack of labels on dialysis solutions and chemicals.  When Temple City Dialysis was inspected in June 2009, the inspector found that employees were not sanitizing pieces of equipment. The inspector also found dust on floors, counters and air vents, leaks in the ceiling, and debris on the floor of some rooms. Bottles of sterilizing fluid were stored in milk crates, trash bins were placed on dialysis machines and stained towels were found under a sink. When Azusa Dialysis was inspected in September 2009, many of the same conditions were found. Ceiling and wall vents had "an accumulation of dust," there was dust and debris on the floor, and a handwashing sink was being used to store supplies. Soiled gloves and a syringe were found on the floor of one room, and sterilizing liquid was stored in a dusty milk crate.  Sterilization and cleanliness are important during any medical treatment, but especially so in dialysis. Because the patient's blood is being removed from their body to be cleaned, bacteria and viruses in or on the equipment could potentially be passed directly into the bloodstream.  Messages left for the administrator at Azusa Dialysis were not returned. State records identify the administrator as Yaseen Bari, who is also on record as the administrator of Temple City Dialysis.

Comments regarding mortality rates and dialysis center conditions:
Administrators defended their clinics, despite high mortality rates, saying many factors that contribute to patient deaths are out of their control.
Lauren Moughon, spokeswoman for DaVita, one of the largest chains of dialysis centers in the country, said mortality rates are often "just the luck of the draw."
"People that crash into dialysis tend to be much more fragile and much sicker because their blood has gotten toxic and it's just a bad situation," she said.
Salvador said Temple City Dialysis has a high mortality rate because some of the clinic's patients stopped dialysis and died after entering hospice care.
And she said sometimes life-threatening infections result from regulations put in place by HMOs. In particular, she said the clinic cannot remove patient catheters without prior approval, leading to an increased possibility of infection while they wait.
That sentiment was echoed by Mary Shih, administrator of the Rosemead Dialysis Center. That clinic has an overall mortality rate of 20 percent and a first-year mortality rate of 36 percent.
Some patients do not do their part to stay healthy, Shih said. One patient, who was a construction worker, got an infection after getting his catheter dirty while working, she said.
"No matter what you tell patients they just don't listen," Shih said. "It's hard, it's really difficult."
Shih also described how larger clinics with more resources engage in "cherry picking" the healthiest patients. That leaves the smaller clinics with only the sicker patients who are more likely to die.
Brian Hess, a 30-year-old dialysis patient from Oklahoma, said he's seen cherry picking first hand. Some clinics will turn away patients who have health problems in addition to kidney disease, he said. A friend of his was refused treatment at some clinics because of his mental illness.
"I don't think someone should be turned away for something like that when this is a life-or-death situation," he said.
Hess, who has been suffering from kidney disease from age 6, agreed that patients are often responsible for their own health issues, but said nurses don't always seem trained well for their jobs.
"It's on both sides of the fence with the patients and with the nurses and the techs and it all has to do with education on both sides," Hess said.
And he said clinics do seem to vary a lot in quality, with some being too crowded or not clean enough.
Because of the poor conditions at some clinics and the possibility he could catch an infection during treatment, Hess has now switched over to home dialysis. He said it is not only cheaper, he feels better about the process because he is in charge of his own treatment.
"The (treatments) in centers are designed to clean your blood just enough to keep you alive, whereas at home you're doing it much more often and so you're doing a much more thorough cleaning so you're healthier and feeling better," Hess said.
…………………………………………………………………………….
"A New Attitude"
Dialysis companies and their staff need to take on a new attitude in relation to their quality improvement. In order for this new culture to be successful, there must be teamwork, leadership, and education.
The other important factor in this is to empower certain individuals such as the staff member and the center Director. This new paradigm needs to blossom from the staff outward to the management. Each person in the dialysis center needs to "own" the charge of quality improvement.
Review, Monitoring, and Evaluation
Two items that should be addressed when discussing QA/CQI are:
(1) What needs to be reviewed, monitored, and evaluated, and
(2) Who will need to be reviewing those things.
According to past surveys of dialysis centers and quality standards, the items that need to be reviewed are:
•   Growth and capacity of the center;
•   Patient mortality;
•   Patient satisfaction;
•   Patient services committee findings;
•   Clinical standards and outcome goals such as adequacy of dialysis, nutrition, bone disease, anemia, blood pressure, serum sodium bicarbonate, vascular access, and patient treatment adherence;
•   Hospitalization trends;
•   Infection control;
•   Adverse occurrence reporting;
•   Physical systems review;
•   Safety program review;
•   Policy and procedures;
•   Management;
•   Audit tool review;
•   Labor trends; and
•   General discussion area.
Roles of the Staff Members
The following people need to not only participate in the QA/CQI process, they also need to be empowered to "own" their particular areas. They must understand the importance of the program and how their thorough, consistent monitoring, evaluation, and follow-through will improve the life of the patient.
Members of the QA/CQI team will need to assume the following roles:
•   Medical Director;
•   CEO of the center;
•   Clinical coordinator (or charge nurse);
•   QA/CQI coordinator;
•   Anemia manager;
•   Biomedical technician;
•   Vascular access coordinator;
•   Dietitian;
•   Social worker;
•   Safety/hazardous communication director;
•   Reuse technician;
•   Infection control coordinator;
•   Training/in-service coordinator;
•   Facility maintenance manager; and
•   Peritoneal and home or acute dialysis representatives, if these programs are available in the facility.
Specific Accountability Tools
The reporting of these areas will consist of each member of the QA/CQI team having an individual tool that is specific to their area of accountability. A simple example of this is in the bone management area.
The bone management data will be reported during the QA/CQI meeting. The individual names of the patients will not be discussed at that time, however, due to patient confidentiality. But, in order for improvement to actually occur, during some venue, both the overall and individual patient data will need to be reviewed to determine why the goal is not being met, and a plan to implement how to achieve the goal will need to be established.
Conclusion
The quality assurance/continuous quality improvement program is not only very important in order to ensure that quality dialysis is being delivered to the hemodialysis patient, it is also an obligation that the dialysis community owes to the patient. The provider of this life-saving service must strive to improve the lives of the patient and ensure that the established goals are met. Even though there will be many man-hours required to develop, implement, train, and monitor for the success of the program, it is one program that must be in the forefront of the dialysis center from the President/CEO of the company to each staff member at the individual facility.
Patients need to understand the QA/CQI program that is implemented in the center where they dialyze and how they fit into that program. They should feel free to ask questions about the overall quality of care that is provided by the dialysis staff. They have the right to know what the quality of care is they are receiving!





         
 

[Whamo]

The quality of my life since I started dialysis has improved.  Yes, improved, because my health was so bad before dialysis, that I immediately noticed flashes of improvement.  That said, I hate dialysis, especially the time in the kidney center, as it is like a nightmare version of Groundhog day.  It's the needles, the body sucking dry, the cramps at the end, and the empty headed feeling.  It varies, and some days aren't so bad.  Sometimes I get cramps in the middle of the night.  Sometimes my sleeping is disrupted.  Sometimes I get really tired.  But other times, I feel really good, after dialysis, and really enjoy life.   I keep trying to adapt to the changes, and I think that helps.  But, despite my best efforts, some days just suck.  I live for the good moments.

[cariad]

Re the point that ESRD never ends, that is very true, but almost half of all Americans suffer from a chronic, incurable disease.

http://www.cdc.gov/chronicdisease/overview/index.htm

Yet other chronic diseases get more PR than ESRD and dialysis.  I saw yet another ad for yet another breast cancer fund walk, and all of the participants (or at least all the people in the ad) were young or young-ish.  Maybe people on dialysis aren't pretty enough or don't photograph well.  That's meant to be a flippant remark, but I think there is a grain of truth in it.  The truth is that the majority of people on dialysis are older, many being MUCH older, and the optics aren't so great.

That thought lead me to my next thought.  The majority of people on dialysis are either older or of an ethnic minority, and those are two groups who don't have much power in our society today. 

To be fair though, here in Chicagoland, we have been seeing ads on TV from the State advocating donation.  It features a middle aged blonde woman who apparently worked at one time as some sort of tx coordinator and then found herself in need of a kidney.  We went to the movies yesterday ("Chimpanzee"), and this ad was shown before the film.  Also, matchingdonor.com is running an ad I hear every day on the radio ("Do you wanna piece of me?"), so we're not being ENTIRELY ignored. But I can't escape the idea that our PR isn't so great because esrf and dialysis is perceived to be an "old/brown people's disease".  I hate the idea of being ageist or racist, and if my perception is incorrect, PLEASE TELL ME because I do NOT like believing this way.

But then there's Alzheimers.  Old people are the primary victims, but we hear plenty about it.  My local hospital that I complained about has support groups for THAT disease, but then I remember that when you see ads for Alzheimer care, they are aimed at a younger generation that suddenly find their ageing parents need help and don't know where to turn, so those ads always feature younger people.

I think focusing on the public adverts is narrowing your view. I did not follow the cdc link but I don't see age being the issue. How many people can say they were being treated for breast cancer at 2 years old? Kids are generally healthier than adults, but they do go into kidney failure and they do get some types of cancer, but not the ones you've mentioned. I just don't know that people understand kidney failure as somehow only an older person's disease. In my experience, of course, I went into kidney failure as a child, and my 70-something grandfather and my 90-something grandmother both died of cancer. With Alzheimers, well, the adverts would focus on how it affects the family, wouldn't they? It does not make much sense to try to appeal to the people who suffer from it - they really are in no position to act on that information. Studies to better understand and reverse the effects of aging are actually very well funded whether we hear about them or not. One of our support people for the transplant has developed an amazing Alzheimers program that she takes all over the world. It is definitely all about the person with Alzheimers, not the family. And she is not a medical person, it is about improving their quality of life, getting them actively engaged with one another in whatever capacity they can still manage. Anyhow, I disagree that older people lack power. Unless they are somehow disabled, older people often have the time, and in some cases, the money to spare. AARP is quite a powerful special interest group. Yes, youth is frequently worshiped and sought after, but that does not mean that young people have more power to change their world.

As for race, when you are talking about the racial profile of kidney failure, you are really talking about Type II diabetes - the leading cause of kidney failure and more prevalent in certain minorities. So, really, we should probably be questioning why there are not flash social marketing campaigns for that disease. I took a basic public health masters level course last term and barely escaped with my sanity. Everything was about waggling a finger at sick people for not taking care of themselves and bringing your condition on yourself through lack of prevention. This is especially fashionable with Type II diabetes, although it seems pretty obvious to me that there is a genetic link there. If you come at people with only condescension and blame to offer, it is small wonder that people will tune you out. I would like to see our culture shift from one of thinly veiled hostility toward the chronically ill to support so that people can feel empowered. I thought Bill's take on quality of life was pitch perfect. Maybe the doctors could stand to lose their paternalistic attitudes and approach people with the idea that they are capable, intelligent individuals who want to be more than a disease, and see where that takes them.

[MooseMom]

 Anyhow, I disagree that older people lack power. Unless they are somehow disabled, older people often have the time, and in some cases, the money to spare. AARP is quite a powerful special interest group.

Ugh...I bought a year's membership to AARP, and they send me their magazine that covers all sorts of issues related to older age.  Not once have I seen anything about dialysis or renal disease...not once.  So while AARP might be a powerful special interest group (mainly as a vehicle for selling insurance), they don't seem to have any special interest in dialysis.

The average age for dialysis patients in the US is over 60, and I suspect that whatever condition has brought them to ESRD has impoverished them and has robbed them of much free time.  I further suspect that this population is indeed "disabled".

Of course you can get ESRD as a child, but how often do you see sad stories on TV about children on dialysis?  We've all seen the many media stories and photos of sad, baldheaded kids with cancer.  I've not ONCE seen a photo in the media of a child on dialysis.  Maybe I've just missed them.

I may be waaaay of course, but I can't help but wonder that if ESRD afflicted more working age people than older people perhaps already on Medicare, we'd see more in the way of progress.  This is not a long held belief of mine; it's something that just struck me at about 3AM this morning when I was trying to suss out why we hear so much more about AIDS or cancer or Alzheimers than we do about ESRD.  There must be a reason, and I'm just guessing.

As for race, when you are talking about the racial profile of kidney failure, you are really talking about Type II diabetes - the leading cause of kidney failure and more prevalent in certain minorities. So, really, we should probably be questioning why there are not flash social marketing campaigns for that disease. I took a basic public health masters level course last term and barely escaped with my sanity. Everything was about waggling a finger at sick people for not taking care of themselves and bringing your condition on yourself through lack of prevention. This is especially fashionable with Type II diabetes, although it seems pretty obvious to me that there is a genetic link there. If you come at people with only condescension and blame to offer, it is small wonder that people will tune you out.

I suspect that there is a genetic link, too, and also to hypertension, but that's a difficult premise to air.  I perceive quite a lot of general knowledge about diabetes, but living in Chicago where there are large minority populations may have just made me more aware of such campaigns.

I would like to see our culture shift from one of thinly veiled hostility toward the chronically ill to support so that people can feel empowered. I thought Bill's take on quality of life was pitch perfect. Maybe the doctors could stand to lose their paternalistic attitudes and approach people with the idea that they are capable, intelligent individuals who want to be more than a disease, and see where that takes them.

I'm sure you are right, but I must confess I've never dealt with a health care professional who had a "paternalistic attitude".  I have no doubt they exist, but I've yet to encounter one.  I think I'm just lucky.  We'll see what happens when I go up to Madison next month.  LOL!

[cariad]

At the afterschool with screaming kids on the other side of the door, so excuse possible incoherent response.

I don't know what the average age of 60 stat really tells us. That may sound contrary, but if you spend a week on dialysis, are you included? I ask because dialysis would be the only option offered for most people beyond a certain age. Young people will be more likely to be off and on dialysis through the years. Also, stats are one thing and public perception is another. With the PSAs I am not sure what it is that you would see as the ideal, MM. Because the poor little bald children from St Judes want money. Fairplay, the poor little dialysis child already gets their treatment funded by the government. If it's any consolation (and I know it's not) those social marketing campaigns for heart disease and AIDS don't really work either. AIDS is also a disease of predominantly minority communities. I can only remember seeing one PSA for diabetes and that was for type I with Mary Tyler Moore. If you are hearing more down in Chicago then that is most encouraging, provided they have not made a hash of it with scolding lectures.

AARP is politically powerful was all I was really saying. I have been receiving their fliers ever since I can remember, probably because I was on Medicare from a young age. Boy has THAT got old by now, no pun meant.

The paternalism is less an individual problem and more the product of both a culture that elevates doctors to a godlike status so that we are taught that they know better than us, and a consumer culture that says we are paying for this, we expect someone else to do the work for us. The paternalism is evident in our low home hemo rates and the lack of expected independence. However, you must be doing something right if you've not had condescension raining down upon you from transplant surgeons.

I just see the awareness campaigns as having very limited value when it comes to quality of life. Unless we want pity. Which we don't! I think we all agree there. I don't know, do we stand to improve quality of life somehow from those often-nauseating PSAs?

[Gerald Lively]

If I never said another word on this forum, I suspect that no one would comment on the long post I made a few posts ago.  There is a world of experience by the members of this forum.  If I am to engage knowledgeable people on the “Quality of Life” in those dialysis centers, I need to know everything there is to know, your ideas for improvement, etc.  Advocacy is a bitch.  Piss and moan or help!  If there is no help, I quit!

gl

[MooseMom]

gl, I read your long post and didn't comment because there's nothing there that I'd disagree with.

Cariad, there is a lot of conversation within the "dialysis community" (such and umbrella term) about how to define and then quantify quality of life.  Is it enough to just meet the minimum standards regarding adequacy, anemia controls, etc?  I'm sure you have imagined what life would be like on dialysis, raising two young boys.  In such an imaginary scenario, how would you define for yourself a good quality of life, and how do you think you would attain it?

[cariad]

My dialysis fantasies have pretty much been limited to trying to picture what it will be like in those last few moments of refusing dialysis, slipping into a coma and passing away. I know that's harsh but my dialysis experiences have been completely atypical (I've never been inside a dialysis clinic, I've never had needles used on me, or at least I do not remember them 'testing' my fistula as my records claim) so it truly is not something I think about with regards to myself. I think the trouble with awareness campaigns is that you need to decide what the goal is, and kidney failure is nothing if not hugely varied in treatment. When I attempted to do it a bit of justice for public health, I found myself at a loss as to what to suggest. You cannot really condense kidney failure into a 30 second spot. If you horrify people with images of suffering on dialysis, they are immediately going to jump to transplant as the answer. If you talk about how fantastic life on dialysis can be, you run the risk of disillusioning potential live donors. I personally suggested (just for the purposes of my silly little paper) that it really needs something more like a reality show or lengthy documentary to cover all the bases. Aside from that, if you don't convince people that there is something that they can do then they will ignore you, but what do we want from the public that will improve the quality of life for those on dialysis?

I think Bill's answer was brilliant, I really do. Quality of life is individual so I really think that campaigns and trying to dissect the concept and nail down a definition that will suit everyone is sort of futile. I equate quality of life with being happy, and that mostly has to do with everything I'm doing that has nothing to do with the daily minutia of staying alive. I periodically get contacted by my original transplant hospital with a massive quality of life survey - I've never filled them out. It's just too overwhelming to answer all of those freaking questions and I found myself getting upset reading through the questionaire. If I wasn't thinking about the transplant I was happy, but being asked to think about how it may have affected my life, how it may have robbed me of things that I was not actually missing in that moment until they came along, it irritated me. So, I guess I cannot be much help. Dialysis is not my realm anyway. There are so many people on here who can offer insight, I am just really not one of them (though I thank you for being polite enough to ask my opinion). I only responded (not that I am not enjoying the conversation, because I am) because you seemed bothered by the idea that kidney disease is ignored by the country because it strikes older minorities, and I do not see that as the case. I think it may be more a matter of we have too many options for our own good. Everyone can understand Give us money or the cute little bald boy dies! It is more difficult to keep someone's attention long enough to explain that we do have options, but they come with a lot of strings, but some people do very well, and no transplant is not always an option, and transplant is not a guarantee..... and so forth. I think your answer will have to come from those on dialysis or it will be like asking men to enlighten our country's leaders on women's reproductive health care needs. And that would just be silly! 

[MooseMom]

I think your answer will have to come from those on dialysis..

You're right, hence this whole thread.  Unfortunately, though, most patients don't get to set the parameters for their treatments so don't really get a voice in determining what their quality of life will be and how they will attain it, except for cases where there is a clear choice between home dialysis and inclinic dialysis.  Other than that, there is the cookie cutter, one size fits all template set in stone by the providers and the payers, and if that size happens to fit you, then your quality of life will be better than if that size doesn't fit you.  But if it doesn't fit you, then what do you do?

What do the Breast Cancer walkers or any illness group want from the public that will improve the quality of life for those with cancer or those with ESRD?  Money.  Money for research into better machines, perhaps.  Money for the development of better drugs to control anemia.  Money for nicer clinics with better trained staff.  I'm not really sure what people who participate in charity events think is done with the money they raise, but they must think it is going toward improvement of some sort in some way.

I suppose what also is desired is attention so that someone with said malady will approach their Congressperson and push for more funds.

I am not the only poster who has noticed the difference in the attention given to cancer as opposed to the attention given to dialysis, and I am just guessing why that might be the case.  Does anyone here think there is greater public awareness of dialysis and ESRD than of cancer or AIDS?  Cariad, do you have any hypotheses that might explain why, in the monthly magazine I receive from our hospital AND the daily local newspaper, there is a list of support groups for the following...

http://delnor.com/Workfiles/Classes/Delnor_Support_Groups_2012.pdf

I see nothing for renal or dialysis patients, and I am not sure why.  I actually did call and ask, but I got no coherent reply.

As for defining quality of life as being an exercise in futility, you may well be right, but if we as an affected population want to lobby Congress for any changes in current dialysis practice, then we need to be able to tell them why we want changes and why we want the FDA to fast track certain new technologies and why we might want a mandated minimum hemoglobin level and why we want practice to be dictated by our nephs and not by Kent Thiry.  Unfortunately, Congress is mired in red tape and politics, and they want more than just an airy fairy idea of what a good quality of life should look like for a patient on long term hemodialysis.  And Congresspeople watch TV and read the papers and surf the web, and a good PR strategy can change their perception and knowledge of dialysis.

[jbeany]

If I never said another word on this forum, I suspect that no one would comment on the long post I made a few posts ago.  There is a world of experience by the members of this forum.  If I am to engage knowledgeable people on the “Quality of Life” in those dialysis centers, I need to know everything there is to know, your ideas for improvement, etc.  Advocacy is a bitch.  Piss and moan or help!  If there is no help, I quit!

gl

Sorry Gerald!
I bought a car last week, a house yesterday, and I've got exams today.  I'll go through it when my head stops spinning!

[cariad]

MM, that hospital does not perform transplants, right? That was a rather arbitrary list, but then that will be the case with any list of hospital support groups. Far as I know, both hospitals in town that perform transplants also provide transplant support groups.

I actually do have a theory for why dialysis support groups are a rarity (at least through a hospital) - people who report to a unit 3x a week probably don't want to make an appointment to see these same or similar people in their off hours. I would think that dialysis does eat up so much time and effort that the majority of people would quickly drop a support group because it's just another appointment. And I could not agree more with Bill Peckham about how I feel about another appointment and having to trudge through the details of how I've come to this point in my life. IHD is such a great solution - it's open to anyone with an internet connection, which is more people every day, and there are no appointments, no obligations to tell your story, no facilitator who interrupts to try to get at some deep psychological underpinnings of your emotions. Yet, when we want that sort of response here, we just have to ask for it.

I think what people on dialysis need is pretty much what the rest of us need: dignity, autonomy, friends to forget our troubles with, and a feeling that we make a difference in the world somehow. We cannot change the fact that people who need dialysis need it. I think solutions like the artificial kidney are on the horizon, but that is not going to improve quality of life for those on dialysis now.

Cancer and AIDS have a higher sense of urgency than renal failure. Cancer is a greater killer than renal failure, and AIDS captured the public imagination so to speak when it became somewhat like McCarthy's Red Scare. People lost employment or were dropped from their health insurance on suspicion of being homosexual, hemophiliac children were ostracized - it became a devastating civil rights issue almost overnight. Do you remember when AIDS was originally called Wrath of God Disease? The drama of that disease was hard to ignore.

Dialysis did once have all of the drama anyone could desire. We received much attention, and ultimately much reward, in the late 60s and early 70s. I am fairly certain I've said this before, but the problem as I see it is what your typical individual who has no current connection to renal failure will think: Let me get this straight. They already get their medical bills paid for by the government while I struggle to pay my premiums but that's not good enough for them, now they want what? Some nebulous quality-of-life improvement? Who is coming to assess my quality of life and then paying to improve it? There are finite resources in any country, so how can we honestly argue that we need money to be more comfortable when the paranoid schizophrenic is turned out on the streets by the medical system. (Or whatever underrecognised condition). I think people on dialysis would do well to find any possible win-win scenarios and then aggressively pursue them. Does home dialysis save the system money? I think we should have self-care clinics which would free up the staff to attend to those who truly cannot do it on their own. Aranesp, well, the problem there is that public health is useless at tailoring treatment, and there will not be a single number that will cover everyone. The deaths from too much Aranesp were real. What could kill me would be fine for someone else, so I just think we need to stop handing medical care over to for-profit interests.

We need socialized medicine. There, I said it. 

[MooseMom]

Cariad, thanks for your post.  I will alert the group of people with whom I have been speaking lately to your comments.  There is a pervasive feeling that "dialysis is broken", but you seem to imply that it isn't, really, especially if you get rid of the one size fits all idea.  Everyone seems to already know this, yet the process of dialysis delivery seems virtually unchanged.  And with almost one in two Americans suffering from a chronic disease, I'm not so sure that the whole idea of quality of life is quite as airy fairy as you may think.

BTW, I was not looking for a transplant support group.  I was interested in the fact that there were no such services for dialysis patients, and the hospital does have a dialysis cliinic on its campus.  I understand that many dialysis patients may not want yet one more appointment with any group, but there are others who may have families that might like to learn more or might benefit from, say, the relaxation classes that are available to the cancer patients at their THREE separate cancer care facilities.  And what about home hemo or PD patients who don't dialyze in clinic?  Maybe THEY would appreciate the opportunity to meet other D patients in a nicely kitted out building like the cancer group does.

I have one friend who has AIDS since the 80's, and he's still around.  Not much sense of urgency there.  And I had another friend (well, she was my mom's friend) whose sister had been battling cancer for decades.  The sister is still alive, but my mom's friend is not.  Again, not a lot of urgency.  I am not sure that urgency is the only criteria to be used in determining whether or not a particular malady is worth "supporting".  I would think that the very very long battle that is CKD/ESRD needs even more supplies and ammunition.

[cariad]

Wait a minute, where did I say that dialysis was not broken? I'm saying that it will not be perceived as broken, or not broken enough to warrant further funds. And yes, AIDS was once called 100% FATAL and it struck little innocent children along side those perverts who obviously got what was coming to them. (better clarify that the last bit is sarcasm). It takes a bit of time for people to start seeing these changes, that hey, yeah, that person who was supposed to be dead 20 years is still here! That is happening. You know what the complaint among many AIDS patients is? That most American funding for AIDS gets sent to Africa. It appears that things are tough all over.

What group are we talking about, because I have no interest getting into an argument with people outside this site or coming off like I fancy myself some expert. I am truly confused as to why my comments should be passed along to some outside group. I have not been on dialysis in over two years and it was not in a clinic setting. I am just speculating which is what I thought you asked me to do, about why there were no support groups for renal or dialysis patients. Well, transplant support groups are for renal patients. As are lupus support groups and I assume support groups for people with an insulin pump. (That I have to admit struck me as odd, but then I know nothing of insulin pumps.) This is what I'm talking about! Renal patients are a heterogeneous group so you get people focusing on one sector - people united by a common cause of renal failure or a common treatment.

We have IHD and there is the hopeline through Renal Support Network, and one of our members started her own dialysis support group. I just don't see support groups as being the ultimate answer, but then I've never attended one. I understand that people on home dialysis may want a support group, or maybe they don't. If there is a call for one, then what is to stop you or anyone else in your area from starting one themselves? Wouldn't that give you a great feeling of accomplishment, starting something like that up? I know at Cedars, their support group was over the internet because the social worker there felt that most of the pre-transplant patients (liver, not kidney) were too poorly to make it to a physical location each week.

I don't think quality of life is airy fairy, I think that we are all competing for a larger piece of an ever-shrinking resource, and I am too much of a realist to think that after securing Medicare for all dialysis patients while so many others cannot access life saving or quality-of-life saving treatments, that we can expect that people are going to think we are somehow more deserving of further funds than the cancer patient, the mentally ill patient, the heart-disease patient, and so on.

I've been a renal patient my entire life. As my surgeon has said to me on more than one occasion "you have been there for the entire history of renal replacement therapy". I did my best to answer these questions and now it seems that my responses have made me come off as some sort of status-quo promoting enemy to dialysis patients. I am going to just have to leave this here and in future think more carefully as to whether I actually have anything of validity to say before I being typing. 

[paris]

A quick       Your comments are valuable because you have had a unique journey with this disease.  You have experienced more than most patients and I keep learning from you.    Don't you love proving the doctors wrong and still loving life 20 years later? 

[MooseMom]

Cariad, this discussion has sort of veered in a weird direction.  I do not intend to pass along your comments to some "outside group", but I have entered into some interesting discussions with various people in various groups on various sites who are interested in the whole quality of life issue, and I thought your comments might be of interest along with all of the other comments posted on this thread.  But those people peruse this site anyway, so your comments will be read without me having to call extra attention to them, and they will be read with interest simply because you are a renal patient who is particularly astute and articulate.

I do not really care about support groups because IHD is enough for me, but one poster did ask why other diseases get more popular attention than ESRD and dialysis, and I was just speculating.  I have not taken any public health classes or have entered into any discussion of this topic with anyone in academia, so I know nothing that would give real answers, but that hasn't stopped me from wondering out loud and offering some possible clues.

You are absolutely correct that there are ever decreasing resources for an ever expanding problem, and you are correct in wondering how we can expect people (ie, Congress) to provide more funding for one group while other people need funding, too.  Part of the answer to that is the fact that ESRD is unique, that it is covered by Medicare while, say, cancer is not.  As such, we need to make sure that these funds that ARE allocated to dialysis patients are used wisely.  Patients who do not get good dialysis are hospitalized more frequently, and as I've said before, it is the hospitalizations that rack up the bills.  We as a nation are not good at spending a bit more now in order to avoid spending much more later, so it is a matter of trying to convince certain parties to spend more in, say, providing longer inclinic treatments, providing more clinics that offer nocturnal hemo, providing more programs for getting people to dialyze at home if they can, and providing more staff so that people don't have to skip a day of dialysis which, statistics show, is when most D patients have a higher risk of cardiovascular events and land in the EXPENSIVE hospital.  Staying out of hospital is one good way to improve anyones quality of life.

Defining good quality of life and providing ways to attain it doesn't have to require extra funding for the reasons I've just stated.  The Davitas and the Fresenii of the world are Fortune 500 companies and can afford to offer more dialysis on more days or over more nights for those patients who feel that their quality of life would be improved with more dialysis.  The money is there, it's just that these companies prefer to keep it than investing it in their patients' day to day treatments.

Everyone's comments are valuable.  I talk alot about dialysis despite the fact that I am not yet on it, and you talk a lot about it despite the fact that you don't have experience with longterm, chronic hemodialysis treatment.  I've been a renal patient for over 20 years now, but my experience with this disease differs from everyone else's.  Perhaps I am the one who shouldn't be posting here as I have no real life experience with dialysis.  Perhaps I should not be quite so interested in others' experiences and thoughts; perhaps I am just too intrusive.

[Deanne]

I haven't read all of these, but I keep starting to reply and then get sidetracked. I wonder how much of it depends on how well we can each redefine a good quality of life.

I look at people who I think have a poor quality of life, like the homeless and quadriplegics. Compared to them, even with kidney failure, I think I'll have a pretty darn good quality of life, even on dialysis. If I look at a healthy 20-year-old who's off climbing mountains, taking exotic vacations, and has a personal chef and someone to clean her house for her, then I have a cr*ppy quality of life even now. It's all relative.

I think it all goes back to attitude and whether I can redefine what "good" means as my body's abilities change. If I continue to only define "good" as being that 20-year-old mountain climber, then I'll have a poor quality of life on dialysis. If I can change my definition of "good" to mean I can still enjoy the little things, if I can find internal happiness instead of needing external stimuli, then I think I'll have a good quality of life on dialysis. Time will tell....