Daily dialysis outcomes rival a cadaveric kidney transplant

[monrein]

No Donna I don't think it's strange at all.  Lots of people have jobs they don't enjoy but they do them out of necessity and griping and carrying on never made anything unpleasant more pleasant in my experience.  I think about going to the gym also as a job.  I don't always love working out but it's necessary for my heart etc so it's my job and my friends there make it easier to do what I need to do.  I think your way of thinking about it makes very good sense and most importantly it works for you.  I also like Flip's way of seeing it as a social outlet because he has friends there and his unit is a good one.  Staying healthy takes work past a certain age.  For us it's like working two or three jobs.
I like the way you think.

[petey]

Donna, It's funny you should describe your dialysis as a "job."  When Marvin first went on dialysis (in 1995), he decided it would be his "part-time job," and he treated it like that.  He said, "I have to go -- whether I want to or not, whether I feel like it or not.  When I get there, I may have to put up with some stuff I don't want to put up with.  I may have to be in the 'cubicle' next to someone I can't stand.  I may be underappreciated and underpaid.  But, I have to go."  He never missed a single in-center treatment (12 1/2 years).  When he started home hemo last summer, I asked him if it still felt like a job; he said, "Yes, but now I'm working from home!!"

[del]

Stauffenberg you should spend some time with some of the dialysis patients on here and see how they are living life. It is nothing like your description.  My husband does not have a idle moment any day!!!  He is energy plus. Dialysis is just a minor inconvenience. You should really spent some time with some of those patients before you make your negative comments.  Not everybody is the way you describe.  My husband lives a LIFE!!  Sure it is hindered some by not being able to travel but so what!!!  You can travel if you take the time to plan and make arrangements. What an awful, AWFUL life it would be if he was living it with a very negative attitude.  He choses to make the best of it and to go on as he always has!!  Sure dialysis has changed our lifes but for the most part it as been good changes.  A transplant is NOT a cure. It is a treatment the same as dialysis. The drugs you have to take can have a lot of side effects.  For some people dialysis is their choice and in a lot of cases the best treatment for them!!

[Adam_W]

I normally choose not to participate in "flame wars", but I have to agree with what most have already said. For some people (like me), dialysis is the better choice. It sometimes really offends me when people literally think I'm stupid or there is something wrong with me when I tell them I have CHOSEN not to get on the transplant list at this time. Home dialysis works for me (even though I'm going to be switching from short-daily hemo to CCPD because of more access problems), and it works for a lot of other people as well. Even though I'm a strong supporter of longer/more frequent dialysis, I know that in-centre dialysis works for a lot of other people. I'm in NO way dissing transplants, and I rejoice when I read "I got the call" posts, because I know that most ESRD patients would kill for a transplant (some do, but I won't go there). I just wish I could make people understand that a transplant IS NOT A CURE, and I don't want to go through the risks and deal with the drug side-effects for something that may or may not work. Epoman described it best: a crap-shoot. I'm glad Stauffenberg's transplant is working well, and I hope it continues to work well. For some it just doesn't.

Adam

[BigSky]

Well the power of Kjellstrand's paper is that he compared age matched groups and undercut the long time contention that there is a selection bias among those who thrive on daily dialysis because they are not selected as severely as those who are candidates for a transplant.

I'm not sure what to make of your question about the cause of death. What are you thinking could be happening? If someone with a transplant dies of cancer there is no way to know if they would have had cancer without a regime of immune suppression, just as it is impossible to know if someone on dialysis would have died of a heart attack if they had had a transplant.

Well it is in regard to comparing mortality rates.

Mortality rates might be similar but taking the two groups it is well known that most dialysis patients die because of dialysis related factors.  While those with a tx may not actually be dying because of a direct link to the tx or medication.

In other words did the paper exclude those tx patients who died from causes that were not related to the transplant?

[tamara]

Having done nocturnal dialysis before my transplant , consisting of approximately 32 hours of dialysis a week, there is no comparison to how I feel now post transplant to how I felt then.

One of the reasons I accepted Allan's offer of a kidney from a health point of view ( I won't even get into lifestyle) is the mortality rates of dialysys patients to what it reduces to after transplant.
 I thought if I could do anything to stop either dialysis killing me , or any of the other associated problems that come with it, I was willing to take the chance of a transplant as another treatment option. I  know a transplant is not a cure, but so far nearly seven months after ,  it is a way better treatment for me than dialysis ever was. There is no comparison for me.

[stauffenberg]

Bill: The extremely high rates of depression, suicide, failure to thrive, and voluntary withdrawal from dialysis which I report are not extrapolations from my own personal experience, as you assume, but are in fact based on published statistical studies which are very well-known to those in the field.  If you want me to list them for you I can.

[stauffenberg]

Those who think that my comments about the negative data regarding quality of life on dialysis are just "my own projections from a data base of one" might want to consider the following:

5% of all dialysis patients commit suicide.  Depending on the country, from 7 to 20% of all dialysis patients eventually choose to withdraw from dialysis, knowing that this will cause their death.  There are extremely high rates of clinical depression among dialysis patients, estimated as high as 20% by some.  These data are extracted from: Jeremy Levy, et al, "The Oxford Handbook of Dialysis" (Oxford: Oxford University Press, 2001), pp. 64-65, 530, 534, and Richard Munson, "Raising the Dead: Organ Transplants, Ethics, and Society" (Oxford: Oxford University Press, 2002) pp. 113-114. 

As Professor Levy, whom I know personally, and who has had decades of experience with thousands of dialysis patients concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die."

[monrein]

I repeat.  No one is wrong here.  We are all different in our approaches and in how we handle things.  Suicide is an option and may be the best for some.

[Bill Peckham]

Those who think that my comments about the negative data regarding quality of life on dialysis are just "my own projections from a data base of one" might want to consider the following:

5% of all dialysis patients commit suicide.  Depending on the country, from 7 to 20% of all dialysis patients eventually choose to withdraw from dialysis, knowing that this will cause their death.  There are extremely high rates of clinical depression among dialysis patients, estimated as high as 20% by some.  These data are extracted from: Jeremy Levy, et al, "The Oxford Handbook of Dialysis" (Oxford: Oxford University Press, 2001), pp. 64-65, 530, 534, and Richard Munson, "Raising the Dead: Organ Transplants, Ethics, and Society" (Oxford: Oxford University Press, 2002) pp. 113-114. 

As Professor Levy, whom I know personally, and who has had decades of experience with thousands of dialysis patients concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die."

All your data is based on the conventional three day a week regime, not on a  high dose regime. And when you understand that dialysis is used in a range of circumstances - as a palliative measure - it puts the withdrawal data in context. I don't know where your 5% commit suicide data comes from but this seems unlikely since as you say someone can simply withdraw from dialysis and reach the same conclusion.

The question at hand is for those who are eligible for a transplant which is a subset of those on dialysis - clearly less than half - these transplant eligible dialyzors are not in your subset of those terminating dialysis or there is no data to show that those eligible for transplant are terminating dialysis. The decision someone in that subset has to make is transplant or a high dose of dialysis and this paper shows that a high dose of dialysis clinically rivals a cadaveric transplant.

A second group as large or larger, those not eligible for a transplant due to whatever reason, but not using dialysis as a palliative measure, a high dose of dialysis is a very good option that will offer the best outcomes available to them.

[Bill Peckham]

Well the power of Kjellstrand's paper is that he compared age matched groups and undercut the long time contention that there is a selection bias among those who thrive on daily dialysis because they are not selected as severely as those who are candidates for a transplant.

I'm not sure what to make of your question about the cause of death. What are you thinking could be happening? If someone with a transplant dies of cancer there is no way to know if they would have had cancer without a regime of immune suppression, just as it is impossible to know if someone on dialysis would have died of a heart attack if they had had a transplant.

Well it is in regard to comparing mortality rates.

Mortality rates might be similar but taking the two groups it is well known that most dialysis patients die because of dialysis related factors.  While those with a tx may not actually be dying because of a direct link to the tx or medication.

In other words did the paper exclude those tx patients who died from causes that were not related to the transplant?

Why wouldn't non-ESRD related deaths be similar between the two groups?

[Bill Peckham]

I repeat.  No one is wrong here.  We are all different in our approaches and in how we handle things.  Suicide is an option and may be the best for some.

Withdrawal from dialysis is not suicide.

[monrein]

I don't necessarily think it is Bill.  I meant actually deciding to end one's life and then taking one's life.  I can see how some might argue that withdrawing from a life sustaining treatment such as dialysis is suicide  but I would not count it as such from a statistical point of view.  I make the distinction between ending one's life by an act of suicide and ending one's life by not submitting oneself to extraordinary measures.

Either way,  if life becomes too much to bear then actual suicide or a withdrawal from treatment are, in my view, viable options.  I do of course think it's important to deal with the issue of clinical depression that may make life feel unbearable if untreated.

[flip]

Most of the patients in my center who have died lately did so because of other medical problems and not as a direct result of dialysis. We have had no suicides in my brief tenure there. Unfortunately many of these statistics don't take into consideration such factors as other medical problems, mental state, socio-economic factors, and quality of care.

Many other illnesses have a much higher suicide rate than ESRD. Everyone has a different physical and emotional response to dialysis and these factors should be included. I still maintain that a dialysis patient with a positive attitude and no other serious medical problems can expect a normal lifespan.

[BigSky]

Why wouldn't non-ESRD related deaths be similar between the two groups?

Well first off tx patients as a whole travel and do far more stuff than those bound to a machine daily.  Thus exposure to far more factors in their life.

They merely compared their rates to the total USRDS 2005 Data Report and that was it.


Without separation as to death the mortality rate comparison means little as its not giving an accurate picture.

[Bill Peckham]

Why wouldn't non-ESRD related deaths be similar between the two groups?

Well first off tx patients as a whole travel and do far more stuff than those bound to a machine daily.  Thus exposure to far more factors in their life.

They merely compared their rates to the total USRDS 2005 Data Report and that was it.


Without separation as to death the mortality rate comparison means little as its not giving an accurate picture.

Hmmm I don't think exposure to life is a mortality risk. The data seems solid to me but if what you're thinking is true - getting a transplant increases the risk of death through sky diving or something then you'd still have to say death is death and you're as likely to die after cadaveric transplant as you would be if you were dialyzing more frequently. It would be hard for me to travel more than I do - 5 trips in the last 5 weeks. I'm at Midway in Chicago right now about to board. If the plane crashes then I guess that will count against daily dialysis.

[petey]

Most of the patients in my center who have died lately did so because of other medical problems and not as a direct result of dialysis. We have had no suicides in my brief tenure there. Unfortunately many of these statistics don't take into consideration such factors as other medical problems, mental state, socio-economic factors, and quality of care.

I'll speak for Marvin's little corner of the world.  When he was in-center hemo (3 x week) for 12 1/2 years, there were about 200 deaths of patients from his clinic over the span of time Marvin was there.  No suicides (0%).  No patients chose to stop dialysis (0%).  The deaths were all related to other medical problems.

Stauffenberg, can you give me Professor Levy's contact information?  I'd like to make sure the numbers from Marvin's in-center experience are included in his next survey of renal patient deaths; I'll bet that would make his "suicide" and "chose to stop dialysis" percentages drop.  Oh, and I'd also like to talk to him about this assertion:

As Professor Levy, whom I know personally, and who has had decades of experience with thousands of dialysis patients concludes: "It is not uncommon for patients or family to feel that the quality of life on dialysis is so poor that they would rather die."

This guy is talking to the WRONG dialysis patients!

Of course, we all know that anybody can make any numbers reflect whatever thesis they're trying to prove at the moment.

[stauffenberg]

I provided you with the page number of his published book: that should enable you to find it.  I would trust an opinion of a world-recognized expert over that of anyone on this message board.

[BigSky]

Hmmm I don't think exposure to life is a mortality risk. The data seems solid to me but if what you're thinking is true - getting a transplant increases the risk of death through sky diving or something then you'd still have to say death is death and you're as likely to die after cadaveric transplant as you would be if you were dialyzing more frequently. It would be hard for me to travel more than I do - 5 trips in the last 5 weeks. I'm at Midway in Chicago right now about to board. If the plane crashes then I guess that will count against daily dialysis.

Really,  So are saying you have less of chance of dying traveling the world than sitting and home?  I dont think so.

The paper merely compared totals of the data report.  Unless those totals are broken down it means nothing.  One has to exclude unrelated deaths from the data report in order for it to honestly compare mortality rates.

[stauffenberg]

Bill: I don't understand the statement that 'withdrawal from dialysis is not suicide.'  Of course it is!  If you voluntarily choose to do something (unhook yourself from a life-sustaining machine, withdraw from a life-sustaining therapy) which you know will result in your death, then you are committing suicide.  Similarly, if you deliberately abstain from taking whatever it is you need to live, such as food, water, air, or in some cases, dialysis, then you are also choosing your own death and any coroner would rule it as such, so again, it is suicide.

Another negative factor to keep in mind with respect dialysis is that dialysis causes a release of toxic cytokines into the body, causing a generalized inflammatory response, which further leads to morbidity and mortality.  With more frequent dialysis, there will be more frequent dumping of cytokines into the blood stream, so the negative effects will increase.

[petey]

I would trust an opinion of a world-recognized expert over that of anyone on this message board.

Oh, stauffenberg, you're too innocent and naive!  I carefully consider everything -- distorted numbers and all -- and use good, old common sense when I'm trusting others' opinions.  Remember, there are nuts everywhere -- even ... you guessed it ... among the "world-recognized experts."

[Meinuk]

These data are extracted from: Jeremy Levy, et al, "The Oxford Handbook of Dialysis" (Oxford: Oxford University Press, 2001), pp. 64-65, 530, 534, and Richard Munson, "Raising the Dead: Organ Transplants, Ethics, and Society" (Oxford: Oxford University Press, 2002) pp. 113-114.

If that data was published in 2001 & 2002, when were the studies done?  Last time I checked it is now 2008, there have been advances in Dialysis and CKD treatment AND unless native kidneys are removed, individual CKD is unique and it would take a very large study and population sample to provide statistically viable data - to account for permutations in residual kidney function. (not to mention co-morbidities or all of the other variables mentioned above)

I think that the whole point of the paper (written about a study from 2005) cited in the original post is that the trends are changing and that daily hemo is providing excellent results (rivaling transplant).

Let's work for more advances like this.

[del]

Stauffenberg I would like to know where you got the info "With more frequent dialysis, there will be more frequent dumping of cytokines into the blood stream, so the negative effects will increase."  I have done a LOT of research on dialysis, kidney failure, nocturnal dialysis and transplants.  I have never found any info of this type.  All I have found is how good short daily and nocturnal is and how it is a much better dialysis treatment than conventional.  My husband has been on nocturnal 5 nights a week for a year and a half now and the only effects he has had are positive ones.  Could you please quote the source of that info so I can read more about it.

[flip]

I'm sure there is substantial difference between dialysis and health care in Europe as opposed to what we have here in the US. I think studies done in this country would be much more pertinent than those done abroad.

[Bill Peckham]

Bill: I don't understand the statement that 'withdrawal from dialysis is not suicide.'  Of course it is!  If you voluntarily choose to do something (unhook yourself from a life-sustaining machine, withdraw from a life-sustaining therapy) which you know will result in your death, then you are committing suicide.  Similarly, if you deliberately abstain from taking whatever it is you need to live, such as food, water, air, or in some cases, dialysis, then you are also choosing your own death and any coroner would rule it as such, so again, it is suicide.

Another negative factor to keep in mind with respect dialysis is that dialysis causes a release of toxic cytokines into the body, causing a generalized inflammatory response, which further leads to morbidity and mortality.  With more frequent dialysis, there will be more frequent dumping of cytokines into the blood stream, so the negative effects will increase.

Insurance companies don't see it as suicide. No religion sees it as suicide. No law enforcement agency sees it as suicide. No philosophical body sees it as suicide. No medical society sees it as suicide. I think your lack of company suggest your point of view is a lonely one.

Cytokines are not an issue with ultrapure dialysate. Again you're using 1990s data/concerns to press a point in 2008.