I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: Bill Peckham on May 08, 2008, 08:19:37 PM
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http://www.billpeckham.com/from_the_sharp_end_of_the/2008/05/daily-dialysis.html
There is a paper abstract available that looks at short daily hemodialysis. Survival data in this group was compared to two others
* Matched in-center hemodialysis patients from the U.S. Renal Data System 2005 Data Report using the standardized mortality ratio and cumulative survival curves. The comparison showed that the “survival of the daily hemodialysis patients was two to three times higher and the predicted 50% survival time 2.3 to 10.9 years longer” than that of the matched in-center HD patients.
* Age-matched recipients of deceased donor renal transplants. In this comparison, survival of patients dialyzing daily at home was similar to this group, reflecting an approximate 50% survival rate at 10 years. The mean age of U.S. patients receiving a transplant was similar to that of the daily home dialysis patients, 50 vs. 49 years (P = 0.280).
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http://www.billpeckham.com/from_the_sharp_end_of_the/2008/05/more-on-kjellst.html
Nephrology News and Issues with More on Kjellstrand paper
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Very interesting article Bill. Thanks.
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Thanks Bill. That's big news, and so different from the standard line I've been getting. Hunh. Science trumps assumptions yet again.
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I find it interesting as well.
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Thanks Bill. Very interesting.
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At my neph's visit this week, he was giving me the same stats. He is the one in his practice that reserches everything and always has the newest answers. He sometimes feels if you are doing well on dialysis (good labs, etc) that a transplant may open a whole new set of problems. He does recommend transplants and is supportive in my quest, but also giving me encouragement if I don't get one and will be on dialysis. Interesting article. Thanks for sharing it.
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This surely does make one think! As much as I want to
see my husband off of the D. Machine, I surely do not want
any further type of health problem to pop up. As I have written
previously, he was very very ill when he began emergency
dialysis. Now, his numbers are terrific, and when he comes home
he feels pretty much OK. It does make you think.
Anne
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Just because the life expectancy with daily dialysis may equal that achieved by a cadaver transplant does not mean that the two treatments are equivalent, since while a renal transplant allows patients to live a normal existence while it lasts, dialysis can be so intrusive a therapy that it destroys the value of life in order to allow the patient to live -- which is as ugly a paradox as you can find in medicine. Also, dialysis generates many more co-morbidities at much higher rate than transplantation does, from osteoporosis to neuropathy and accelerated arteriosclerosis, which even if they do not lower life expectancy below that achieved with cadaver transplants, still diminish quality of life more than the risks of immunosuppression do for most patients. Finally, life expectancy still remains much higher for those who receive a transplant from a living donor.
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soot, now I don't know what to think.
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Remember too that this was short daily hemodialysis - the outcomes for daily nocturnal hemodialysis are superior to short daily.
Stauff your list of dialysis generated comorbidities flow from incenter three times a week regimes. The list diminishes with higher doses of dialysis. There are many people for whom a transplant is contraindicated and this should change their treatment choice calculus - family history of cancer is the most obvious but it may change the calculus for sun/outdoor lovers too. Stauff what this shows is that dialysis outcomes are what they are because people generally do not get enough dialysis. You can compensate with diet and medications but the bottom line is dialysis does work when a proper dose is delivered. I do note that this study confirms my own experience so of course I believe it 100% but despite my anecdotal confirmation it will need further scientific confirmation.
For those who want a transplant higher doses of dialysis will keep you healthier so that when a kidney comes your way you'll have a greater chance of a long time together. Also something to think about is high doses of dialysis will keep you thriving until a medical change makes transplant more appealing if for some reason you find the current kidney transplant industrial complex less than appealing.
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Great information, and it certainly gives one something to think about when considering all the options that are available.
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My husband won't even put his name on the list for a transplant. he feels too good now!!! he is afraid that if he has a transplant he will not be as well as he is now. He does nocturnal hemo and his bloodwork is basically "normal". There are very few if any food and fluid restrictions. He sleeps through his treatment so that he does not lose any time out of his day. Nephs basically agree with him. Transplant is only another type of treatment not a cure.
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My husband won't even put his name on the list for a transplant. he feels too good now!!! he is afraid that if he has a transplant he will not be as well as he is now. He does nocturnal hemo and his bloodwork is basically "normal". There are very few if any food and fluid restrictions. He sleeps through his treatment so that he does not lose any time out of his day. Nephs basically agree with him. Transplant is only another type of treatment not a cure.
Great point. Although many view getting a transplant as the ultimate treatment option, if dialysis is working well and is not viewed as being overly intrusive into one's life, it has its advantages, too. It shouldn't be assumed that everyone with renal failure is merely waiting for a transplant.
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... dialysis can be so intrusive a therapy that it destroys the value of life in order to allow the patient to live -- which is as ugly a paradox as you can find in medicine ...
This may be your dismal perception. For many of us, the value of our lives have been preserved, if not enhanced, due to hemodialysis.
8)
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I agree, Zach, and for those who may never beable to get a transplant, it is good to read positive stats re: dialysis.
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Bill: If you look for a general principle which characterizes all of human physiology it is the primacy given to the preservation of homeostasis. Normal renal function, by its constant clearance of toxins and regulation of internal fluid dynamics, plays an important role in maintaining the body's homeostatis. But any form of dialysis which does not continue 24/7 will always submit the body to discontinuities which evolution has proved willing to expend a lot of energy to prevent. Fluids and toxins accumulate between treatment and always have to be cleared unnaturally quickly on any form of dialysis which operates other than 24/7.
Also, the natural kidney produces a variety of hormones, of which renin, erythropoeitin, calcitrol, and a variety of prostaglandins have already been identified. No form of dialysis can imitate this constant, tailored dosing of hormones which a natural kidney can achieve, but instead has to bolus the dosing in an unphysiologic way. Any endocrinologist will tell you that of the many hormones which have already been identified, there are doubtless many more which still await discovery, so the kidney is probably putting out important chemicals for the body which no form of artificial dialysis can imitate, since we don't even know what they are yet.
I agree that slow overnight dialysis or any other form of daily dialysis is likely to diminish the morbidities associated with dialysis, and this is good for people who have no other choice but to remain on dialysis, but I don't think it could ever be medically equivalent to having a natural kidney, even if the price to pay for this is immunosuppression.
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Wasn't able to read the original paper.
However it seems it might be one of them things of science not looking at the whole picture when comparing deceased donor transplants to dialysis in any form.
That being while mortality rates might be similar in transplants to daily hemo. Are the deaths actually laid out to what was the cause. It seems I read once that many deaths after transplant were not actually related to the tx itself but other causes.
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since while a renal transplant allows patients to live a normal existence while it lasts, dialysis can be so intrusive a therapy that it destroys the value of life in order to allow the patient to live --
Daily, home hemo dialysis is not a huge "intrusive" therapy for Marvin, and it certainly has NOT destroyed the value of his life. Yes, there are other things he could be doing during the 2 1/2 - 3 hours each day (6 days x week) when he's "on" the machine, but he thinks the outcome of dialysis is worth the time he and I invest in it each day. The "value" of Marvin's life is very, very high. He's busy, he's happy, he's productive, and he can't wait to get up every morning and get going. He always has somewhere to go, something to do, someone to help, something to achieve. He smiles all the time and laughs even more than he smiles. His life is good -- very, very good -- and he says that if "allowing the patient to live" means only giving a body breath and a beating heart, that's really not "living" at all -- just existing. Marvin thinks the dialysis treatments allow him to L I V E -- which includes being active, happy, helpful, and a meaningful member of society. It's all in the way you perceive it and all in your definition of "life." Does dialysis give Marvin "life" (by his definition)? You bet it does!
Modified by petey -- (I know this question is going to come up, so I'll go ahead and answer it now.) Okay, so if life is very good for Marvin on dialysis, why is he on the waiting list for a second transplant? Because that's another form of treatment, and he made the choice that he wanted that. If he could, Marvin would choose to be "cured" of this disease and not need dialysis or a transplant. That's not going to happen. So, he chooses dialysis (for now) and a transplant (previously and, hopefully, again soon). Marvin is the type of person who is happy, optimistic, and "ready to go" with whatever modality of treatment he's on at the time.
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The quality of life on dialysis depends to a large extent on how the patient had conceived his life beforehand and what he needs to do to follow his own lifeplan. A young person accustomed to a very busy, highly competitive life and many projects which require energy and travel could be devastated by dialysis, while a senior citizen who was planning to do nothing but sit on the front porch and count the out-of-state license plates on the cars going by might find dialysis makes little difference. What is an expert travelling salesman supposed to do when he is struck down by kidney disease?
The extremely high suicide rate among dialysis patients, the high prevalence of depression, the large number of patients who voluntarily withdraw from dialysis to die (for some absurd reason these cases are not counted as suicides, though of course they are), and the very title of this website, all show how negatively dialysis affects most people.
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The quality of life on dialysis depends to a large extent on how the patient had conceived his life beforehand and what he needs to do to follow his own lifeplan. A young person accustomed to a very busy, highly competitive life and many projects which require energy and travel could be devastated by dialysis, while a senior citizen who was planning to do nothing but sit on the front porch and count the out-of-state license plates on the cars going by might find dialysis makes little difference. What is an expert travelling salesman supposed to do when he is struck down by kidney disease?
Before dialysis for Marvin (he started it at age 39), life was "busy, highly competitive, with many projects that required lots of energy." Thirteen years later (dialysis, transplant, dialysis again), life for Marvin is "busy, highly competitive, and full of many projects that require lots of energy," too. Marvin's life is different now from what it once was (as is mine), but it's still a full, busy, active lifestyle we live.
"What is an expert travelling salesman supposed to do when he is struck down by kidney disease?" you ask. He's supposed to go on living a busy life (albeit different). He's supposed to find something to do each day that brings him pleasure and satisfaction. He's supposed to continue to contribute to society (though maybe in a different way). He's supposed to find a way -- make a way, if he has to -- to still be happy, loving, kind, and positive. He's supposed to be at peace with himself. He's supposed to say to himself, "I still have something to offer to my wife, my family, my community, my world." He's supposed to realize that he still has a purpose. He's supposed to refuse to be bitter and let the disease steal his life (and not just his breathing) from him. If he does these things, I believe, he will be a success in spite of the disease. Is it going to be difficult? Yes, the most difficult thing he has ever done -- or the most difficult thing any person could be expected to do. But, the "sweetness" of life comes from accepting your fate and triumphing (even if only in spirit and not body) over the disease.
Even if the title of this website shows how dialysis negatively affects most people, there are still those who try to find something positive about their own existance. I'm glad Marvin fits in the latter category.
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The quality of life on dialysis depends to a large extent on how the patient had conceived his life beforehand and what he needs to do to follow his own lifeplan. A young person accustomed to a very busy, highly competitive life and many projects which require energy and travel could be devastated by dialysis, while a senior citizen who was planning to do nothing but sit on the front porch and count the out-of-state license plates on the cars going by might find dialysis makes little difference. What is an expert travelling salesman supposed to do when he is struck down by kidney disease?
The extremely high suicide rate among dialysis patients, the high prevalence of depression, the large number of patients who voluntarily withdraw from dialysis to die (for some absurd reason these cases are not counted as suicides, though of course they are), and the very title of this website, all show how negatively dialysis affects most people.
You're just projecting your own biases from your conventional dialysis experience to all dialysis. You have a data point of one which is clearly skewed. Your list of depression and suicides are again your own projections from a conventional dialysis experience, again from a data point of one.
Kjellstrand's paper uses actual data to undercut your harping contention that equates dialysis to a slow death - life is what you make it no matter what your circumstances. The idea that only someone living under your circumstances could be happy or satisfied is silly. And to state that those who enjoy their life under different circumstances are simply twiddling away their days doing nothing is an insult to the hundreds of people I meet every year that give lie to your point of view. You can post from your narrow provincial view point 'til you're blue, but it is all from a data point of one and should have no meaning to anyone else.
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I think that we're all correct here because we all have different personalities and outlooks.
I will speak for myself as that is who I know best. I was 18 when told my kidneys would fail. I thought I'd better do some traveling. So I turned down an unsolicited scholarship and went to Asia for a year. At 26 my Phd plans were interrupted by dialysis so I taught in my field but not in my chosen area and got bored. I studied landscape architecture which was more of an indulgence than anything else but I had fun and learned a lot. Then I began a second career as a family therapist with adolescents. After my transplant I couldn't travel to third world countries which was my passion so I took up wilderness whitewater canoeing instead. Did 11 trips including one to the Arctic. Never wanted a house etc really but due to health had to settle down a bit and turned to my garden for peace, exercise and beauty. I had no idea I could love dirt as much as I do. I was one of the most ambitious 20 year olds on the planet and none of my plans have materialized in exactly the way I would have wished. I always hoped to have children. Too complicated. So I have 6 godchildren including one from France who visits for a month in the summer and a niece and nephew who come twice a year now.
This summer I plan to teach them about dialysis and they might do a presentation at their school. Because of my health my husbands plans were also severely disrupted. However he went back to school and became a lawyer at 40 and just retired from teaching law at a community college. I'm already planning to do some art history courses when I'm feeling better. I don't plan on counting cars because that's not an interest of mine. When and if that's all I'm able to do, I hope I can have fun with it. :rofl; :rofl; None of these things have been choices. They are adaptations, a flexible approach to life. Even my marriage was a fluke. I wanted to stay unattached because I was so ambitious that I didn't want a man's career to get in my way. So I meet a 23 year old guy ay 17 and start living with him. He's offering me a kidney now. So even there my planning was off.
Now, would I choose dialysis ? Of course not. I'm not totally off my rocker just yet. But what choices do I have? I can moan and bitch, complain and be a pain to be around but that bores me. So, on home dialysis I had dialysis parties and friends would come over to help me pass the time. When I was in-centre a friend came to play scrabble regularly. I note the weakness of my body and try to keep my psychological outlook strong. Not always easy to do but dialysis and a transplant for me beats being dead. I still have fun.
Many many people don't get to do exactly what they plan and not because of dialysis. Few people have utterly charmed lives. I also believe that many situations can become too much to bear for some people and for them suicide is a viable option. I hate dialysis but I love life and want to stay in the game. In evolutionary terms those who survive best are those who adapt best to their circumstances. I feel like a survivor.
Think I'll putter in the garden a bit, maybe count some cars just for the practice.
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Wasn't able to read the original paper.
However it seems it might be one of them things of science not looking at the whole picture when comparing deceased donor transplants to dialysis in any form.
That being while mortality rates might be similar in transplants to daily hemo. Are the deaths actually laid out to what was the cause. It seems I read once that many deaths after transplant were not actually related to the tx itself but other causes.
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.
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For those who want a transplant higher doses of dialysis will keep you healthier so that when a kidney comes your way you'll have a greater chance of a long time together. Also something to think about is high doses of dialysis will keep you thriving until a medical change makes transplant more appealing if for some reason you find the current kidney transplant industrial complex less than appealing.
I would do higher doses of dialysis if I could. I'd go three hours five days a week if I could go, it's be like a job to me which is how I look at it now. My dad worked five days a week loading trucks working on the docks for 40 years, 8 hours a day in all kinds of weather. It keeps me sane to look at dialysis like a job--When I was younger and could do it I worked two and three jobs at a time. I worked from 8-5, then 6-11 during the week and on weekends worked sometimes for my uncle and aunts store. When I feel tired or dragged out I think of my dad and how hard he worked and it encourages me--I know it'
s not the same but it helps me cope. He'd come home exhausted and worn out too but he survived it. Is it strange for me to think of it like a job?????????
Donna
Donna
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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.
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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!!"
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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!!
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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
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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?
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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.
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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.
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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."
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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.
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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.
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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?
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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."
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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.
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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.
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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.
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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.
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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.
I think we have a lot to learn from Europe where the results are far superior.
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Medical progress is glacially slow, and anyone who thinks there is a major difference between renal medicine today and renal medicine even 20 years ago should try my 'comparative medical journal' technique. Go to a medical library and have a friend present you with a random collection of photocopied articles from medical journals in a particular field from 1988 and 2008 from which he has whited-out the dates. I guarantee you will not be able to tell which are the modern articles and which are a generation old. Each branch of medicine just keeps spinning its wheels over the same terrritory, decade after decade, with little or no progress. One measure of this is that for the first time since life expectancy was recorded, the average life expectancy of the American male is declining.
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Most current strategies to reduce the problem with cytokine activation by dialysis involve not more pure dialysate but efforts to tinker with the dialysis membrane, either using high-efficiency hemodiafiltration or even coating the membrane with vitamin E. All the work I have seen on this is prospective, still in the experimental stage, indicating that current solutions are still inadequate.
Fuller discussions of the problem of cytokine activation at each dialysis session can be found in V. Panichi, et al, "Inflammatory Pattern in Hemodiafiltration" Contributions to Nephrology, vol. 161 (2008) 185 and D. Cruz, et al, Contributions to Nephrology, vol. 161 (2008) 89.
With respect to whether dialysis is suicide or not, I think that however society wants to label it for whatever particular social purpose it has in mind, any deliberate choice to forego anything readily available which you know is necessary to sustain your life, whether it is water, food, air, or dialysis, is deciding to kill yourself. But I see no problem with admitting this, since suicide is in many cases an entirely sensible response to the horrors of life, especially if there is no other way to escape them and they are unendurable. If a person goes to a movie and finds it awful, I would regard him as a fool if he felt obligated to stay there until the end just because he had started watching it, and in the same way, a person who finds life more unpleasant than pleasant and who cannot repair the situation should exercise ordinary common sense and get out of it as fast as he can. Many cultures find suicide a perfectly honorable and logical alternative, from ancient Greek and Roman stoicism to modern Japan, so I don't see why so many Western countries today insist that the unpleasantry of life be endured to the bitter end to prove some metaphysical point.
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Whatever option a person choses it just a treatment and not a cure. Hopefully studies help people with the choice. There are always going to be people with out comes better or worse than the averages of a study. On these message board are so many people living a fulfilling life through dialysis and transplant. I wish I would have found this board when I was first diagnosed to be more informed about kidney disease and treatment options.
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Medical progress is glacially slow, and anyone who thinks there is a major difference between renal medicine today and renal medicine even 20 years ago should try my 'comparative medical journal' technique
Stauffenberg, I don't need to try your blind journal testing. Twenty years ago, I was working at the Massachusetts General Hospital in their Department of Nephrology, which included their Transplant Clinic and Dialysis Units (Hemo and CAPD). Twenty years ago, EPO was flown in as contraband by our rich patients from Japan, because it wasn't available here in the good old USA. We were just finishing up the OKT3 study, and crushing up rat kidneys to extract cells. I remember the days of CMZ infections and total sloughing of the dermis - much more common then than they are now.
Now, in 2008, we are working on transplantation without immunosuppressives. I dialyze at home using a machine that weighs 70 lbs and is hooked up to my kitchen sink, and I feel good. I have designer phosphate binders that keep my phosphorus in check, and I am on an activated vitamin D that is helping my body adjust.
I agree, progress is slow, too slow, but we are making progress. Stauffenberg, I enjoy your voice in this forum, but with every paragraph I read, you sound more and more like Eeyore from Winnie the Pooh. Your cynicism colors every post, and next to you I sound like Pollyanna (which is hysterical, as I am more cynical than most) My point? Add some construction to your criticism. You are a well educated man, what would you do if you were running a research program? We all see the flaws in the system. Now let' s try to improve it.
The science is there, and we need more people like Dean Kamen, who has thought outside of the box and developed a dialysis machine the size of a phone book. Or, some of the doctor's that I worked with in Boston, who are exploring the use of nanotechnology for dialysis. And with regard to transplantation, there is work going on there as well. None of this will happen fast enough for us, but you cannot deny that it is happening.
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Whatever impact compartment activation has it's implicitly already factored into the morality data.
I agree with Meinuk that there has been progress and I doubt anyone thinks it has happened fast enough. These are difficult problems.
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Stauffenberg has supplied a biased report on many of these issues presented by Bill. First, for anyone that withdraws from medical therapy and dies of the underlying disease, that is not a suicide. The cause of death for a dialysis patient would be ESRD, not suicide. The death would be a direct result of the underlying disease. It is ethically acceptable to refuse medical care under the ethics of autonomy. Further, Staffenberg has ignored the fact that depression leading to withdrawal of anti-rejection medications and subsequent graft failure and at times death is a large problem for transplant patients, not just dialysis patients. Further, Stauffenberg has implied that dialysis is not physiologic but neither is the state of a post transplant patient. The difficulty with the inflammatory state in most dialysis patients is due to inadequate frequency and duration of dialysis with reduced inflammation accomplished by increasing clearance of middle molecules that cause the inflammatory state in the first place. Thus the importance of the paper cited by Bill where improved middle molecule clearance has led to improved mortality equal to transplant. Further, the unphysiologic state of anti-rejection medications leading to diabetes in 4-25% if renal transplant patients, cardiovascular disease, viral infections and a 9% risk of cancer has not in the least been addressed by Stauffenberg in his posts which in my opinion is a confounding bias to his statements.
Yes, for selected populations, renal transplant is an excellent choice, yet are we going to deny that quotidian dialysis is not likewise an excellent choice as well for those that wish to avoid the complications of renal transplant?
Lastly, as a board certified internal medicine specialist, I completely disagree with Stauffenberg's opinion on the lack of progress in renal disease in general and many other disease states as well. His comments on the lack of progress are completely counter to my own experience as a physician with over 20 years experience. I am also a dialyzor for over one year now, and I am grateful for dialysis as my chosen renal replacement therapy in stead of renal transplant due to the cancer risk of renal transplant. I am satisfied that I have a renal replacement strategy that will be quite achievable of ling term quality life. It all comes down to choice, and the truth of daily dialysis and the truth of the real risks of having a transplant have not often been presented clearly. The bias is completely on the side proceeding to renal transplant here in America. Japan on the other hand has the best ESRD mortality figures with a very low rate of renal transplant. Again, for some, especially those with ESRD due to diabetes, that may be the best choice, yet for those with no other comorbidities, the choice of daily dialysis is a very viable option. This is just my own humble opinion.
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I appreciate that scientist and researchers that work hard to find cures and alternatives treatments
BUT.........and their is always a but.........I would not let one work on me.
I would be afraid to be compartmentalized into a statistic.
I had a hard enough time getting the Dr.'s to change my med's to be tailored to me and not some stat.
I had a harder time trying to convince them to let me participate in martial arts and gym workouts.
They wanted me to stay home a be a veggie because those were the "Stat's."
This conversation has gone the way of numbers and science when the most important aspect is the individual.
If it wasnt for us with real life experience there wouldnt be no anyone to challenge the "book smarts."
SHD/nocturnal for the win. :thumbup;
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Welcome to the deep end of the pool doc - we are very fortunate to have a dialyzor who is a medical doctor willing to engage in the online renal community. That was a great first post . The convention is to post an introduction post over here http://ihatedialysis.com/forum/index.php?board=14.0 It can be anything you like but you have such an interesting background I am sure may of the other IHD posters would be interested in whatever you feel like sharing.
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Welcome to IHD, Hemodoc. Thank you for your take on this issue, I completely agree.
Adam
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Epoman always loved these give and take conversations--especially when they became heated! For me, a transplant may not ever be an option, so I am glad to read stats that give me hope for a long life on dialysis. And knowledge from members so I can make the best choice in type of dialysis.
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I was so naive about all of this stuff. Still don't understand so much of it.
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... The bias is completely on the side proceeding to renal transplant here in America. Japan on the other hand has the best ESRD mortality figures with a very low rate of renal transplant. Again, for some, especially those with ESRD due to diabetes, that may be the best choice, yet for those with no other comorbidities, the choice of daily dialysis is a very viable option. This is just my own humble opinion.
I agree.
8)
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Hemodoc: Social labels don't prove anything about whether an act logically amounts to suicide or not. Logic dictates that if you willingly forego anything you know you can easily access and will certainly die without, you are choosing your own death, whether it be air, water, food, or for some people, dialysis. To say that you don't commit suicide by withdrawing from dialysis since you in fact proximately die of the underlying condition which brought you to dialysis is like saying that you don't commit suicide by swallowing cyanide since you in fact only die of the proximate cause -- starvation of the oxygen supply -- which the cyanide causes.
To say that a patient might prefer daily dialysis to the complications of renal transplant is misleading, since both forms of treatment have complications, and no one would prefer the much worse prospets of complications of dialysis over those of renal transplant. What the data showing that daily dialysis death rates are comparable to those of cadaveric transplant disguise is that while the mortality of both therapies may be the same, the morbidity of daily dialysis is much worse. Certainly if you compare the two therapies in terms of QUALYs you have to admit that renal transplant is finitely superior. Anything that inconveniences and immobilizes the patient should be regarded as a 'dis-ease,' so with daily dialysis you have the massive disease of the huge intrusion into the patient's life of one of the most burdensome treatments known to medicine, yet with a transplant the patient takes two sets of pills a day and otherwise functions normally.
Oftentimes clinicians fail to see the forest because they are lost in the trees when it comes to assessing progress in medicine. Progress in medicine has to be measured against the rate of advance in other sciences. So consider that the first jet aircraft (the Me 262) and the Kolff dialyzer were both invented in the same year. But in aerospace we are now almost forty years beyond being able to send a man to the Moon and return him safely, yet there is no where near as much progress in renal medicine, which still struggles with a machine which is so burdensome to apply as a therapy that it ruins the patient's life in order to keep him alive -- one of the most terrible paradoxes in medicine. The problem in dialysis treatment has always been that the treatment is so invasive of the patient's life as to be enormously destructive of it, and until that problem is overcome, which has been the constant and main issue ever since dialysis medicine advanced beyond cut-downs for access forty years ago, I say that there has been essentially zero progress in dialysis.
It is also iimportant to note that Japan has an extremely low availability of organs for transplant because of cultural and religious reasons for people not being willing to donate, and so dialysis is not the predominant treatment there because of any preference for it, but rather, out of necessity. And when you compare Japan's 9% yearly death rate on dialysis with the normal, age-adjusted death rate of the population, it is still a dreadful outcome.
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Dear Stauffenberg,
Thank you for the kind reply. I am quite puzzled why there is a looming disagreement on quotidian dialysis vs transplant. They are both excellent options for certain people. I myself have a higher than average risk of cancer so adding transplant on top of that is quite prohibitive. I believe that there are others out there that are in a similar boat. If you believe that transplant is the best option, then so be it, I have nothing but good to say about having that option.
Now, the issue of suicide and withdrawal of medical care. If your definition is true, then I and many other doctors that have participated in withdrawal of medical care on dozens if not hundreds of patients should have placed us next to Kavorkian in his cell. Of course, I am not in prison due to the fact that when you withdraw medical care for what ever reason and the patient dies of the underlying disease, it is not in any stretch of the imagination suicide. If you wish to disagree with this, then so be it, but in the medical legal and ethical circles, it is not in the least the same.
Now, I could list many aspects of medicine that are greatly improved in my lifetime in the medical field, but I am not really understanding why you don't see what many of us in medicine do. In any case, thank the Lord of the option of dialysis at home and thank the Lord for medicines like ACEI, ARBs and many others that make my life today so much bettern than those that took care of in similar situations just a short while ago.
Once again, I am quite pleased that you have done well with your transplant. Thank the Lord that Bill Peckham has done so well with dialysis. I don't see the conflict between the two that you do. It is wonderful to have a disease that has so many good choices.
May God bless,
Peter
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... no one would prefer the much worse prospets of complications of dialysis over those of renal transplant ...
I and thousands of other people with End Stage Renal Disease have made that decision.
With longer dialysis treatments in combination with phosphate binders, EPO, and Active Vitamin D (along with exercise and good nutrition) we can now avoid many of those complications.
8)
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Stauffenberg, your last post got me thinking. Comparing Dialysis to the Space Program - well, that is a broad comparison. Yes, they are both science, but there is an interesting phenomenon with regard to dialysis. 20 years ago, we were just fighting to keep people alive. There was no quality of life issue, just life. And 30 years ago, when my mother was 44, she died from ESRD, dialysis was not an option nor was transplant. My disease is genetic (PKD), I had a road map of what to expect, and to compare my current health (at 41) to my mother's at the same age, well, there is no comparison. And she had top medical care afforded to her - yet she still died tragically young. All of us on dialysis are being kept alive artificially. But now, we are demanding more, because we see that we can have more and feel better.
I work full time, as do many others. Now that it is being shown that it is possible for people to survive and thrive on dialysis, well, quality of life is more of a driving issue. This is a fairly recent turn of events. With the advent of the internet, sharing of information has gotten more efficient, and people with CKD can organize like never before, lobbying the government, forming support networks, influencing the dialysis market. I feel that dialysis research is still in it's nascency, and you seem to be expecting it to be tenured already.
I am sad that dialysis research has been the red-headed stepchild of medical science, but let's face it, financially, why spend millions in research when all you are doing is prolonging the inevitable? But this is changing. Now that we have so many examples of people who are active and contributing to society and dialyzing - as people stay healthier, hopefully, we'll see more and more activity and growth with regard to dialysis/CKD/Transplant research. What is the dialysis equivalent to reaching the moon? Non invasive dialysis? Or transplantation without immunosuppresives?
As anyone can see from NxStage's most recent stock report, the money isn't there yet, and I live in a capitalistic society. How to get investors for research in a market that isn't profitable? Now that is a challenge. (which brings into play the value of human life - but that is for another day)
You color your posts with doom and gloom and I'll admit that CKD is a "dis-ease", but for me (and others) is is not "with daily dialysis you have the massive disease of the huge intrusion into the patient's life of one of the most burdensome treatments known to medicine" Huh? For me the most burdensome part of dialysis is fighting with NxStage about deliveries. I much prefer it to the alternative - no dialysis. And sitting in a chair for three hours watching tv in my own living room, surfing the net while being hooked up to a machine is immobilizing, but as an American Prime Time Couch Potato, the scene is not very far off from my pre-dialysis evenings.
While acknowledging that there are people out there who are overwhelmed and bitter about their lot in life, for me, I am just happy to be alive, able to work and able to enjoy life's every day beauties. I have technology and scientific research to thank for that. I feel that I am living in life's bonus round and I am grateful for that. (I save my bitterness for politics)
Again, there could always be more, but I feel that your cynical bias sheds a very dark shadow on a disease that is already dark enough.
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One simple statistic speaks volumes: of those patients on dialysis who are in the normal working age, only 30% actually do work. Look at Kevno's eloquent description of how he cannot get his life together between the constant cascade of hemodialysis treatments. Look at the thread where people describe all that they have lost on dialysis. Just look at the title of this entire message board. The situation for dialysis patients is truly bleak.
When I was a university student in Germany part of my training required me to conduct statistical field work at a dialysis center. That was in 1985, and I got to know exactly what the patient were going through then in every detail. When I first became a dialysis patient myself and endured that treatment form 1996 to 2005, I experienced for myself every single negative aspect of dialysis I had personally observed and heard patients complaining about twenty years before. While there is always some minor tinkering to improve the experience of dialysis patients in miniscule ways, the fact is that the situation has remained essentially the same for a whole generation now. From 1942 to today, the problem with dialysis has stayed constant: The only method to allow the patient to avoid death is so intrusive on his time, energy, freedom, and health, that it destroys the quality of the life it is extending.
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We still have no choice but to make the best of a less than ideal situation. Well of course we could choose suicide but that wouldn't be considered a "normal" life either.
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I don't consider my situation bleak. So far, all I've lost on dialysis is a little blood. Nine hours a week in a recliner is just a small inconvenience. I still do everything I did before and my golf game has gotten no worse. I guess I just never bought into the hype "you're on dialysis and you're supposed to feel bad".
I think we'll see tremendous improvements in the dialysis process in the next few years. Some of the current research is very promising so let's just hang around and wait.
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That is still BS. I would rather be on dialysis than be dead. Duh. My life is not what it was before, but we do pretty much the same activities. As a matter of fact, my kids think I am the bomb and my husband does too! I waterski, wollerblade, walk my dogs, play with my kids, work at our office and work at home. I am never surprised by your negative comments and statistics Stauffenberg but just as in society you cannot group all people into one catagory, neither can you group all dislysis patients into the horrible hell hole you make it out to be. Leave me out of that stat thank you very much. I am glad you are well on your transplant, and someday soon I hope to be too. But, not all of us are that depressed or sick.
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That is still BS. I would rather be on dialysis than be dead. Duh. My life is not what it was before, but we do pretty much the same activities. As a matter of fact, my kids think I am the bomb and my husband does too! I waterski, wollerblade, walk my dogs, play with my kids, work at our office and work at home. I am never surprised by your negative comments and statistics Stauffenberg but just as in society you cannot group all people into one catagory, neither can you group all dislysis patients into the horrible hell hole you make it out to be. Leave me out of that stat thank you very much. I am glad you are well on your transplant, and someday soon I hope to be too. But, not all of us are that depressed or sick.
:rant; :rant; :rant; Well said. I'm sick to death of people lumping me into "statistics". All of us are individual, and we all deal with things differently, and respond to treatment differently, so ultimately, "statistics" are a big brown steaming lump of shit. I've said it before and I'll have to say it many more times I DON'T F***ING WANT A F***ING TRANSPLANT RIGHT NOW! I know that a transplant is no "walk in the park", and no bullshit scientific "statistics" will tell me otherwise. Dialysis sucks ass, but IT WORKS AND IT KEEPS US FROM BEING DEAD! I wish people wouldn't constantly sit back and badmouth the treatment that keeps thousands of us alive. And it's ridiculous how a certain someone seems to be able to tell that dialysis has "ruined my life". I have problems with dialysis because it's not perfect, but I deal with the problems and I move on. I have to switch to PD because of some problems, but I'll deal with that as well. I may even come to prefer PD over daily hemo. I'm still alive, and my life isn't the least bit ruined by this "barbaric outdated treatment." Sorry for the rant-fest, but I've been following this whole "dialysis vs transplant" thing and I just had to let out some steam that was building up. Sorry if I offended anyone.
Adam
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While acknowledging that there are people out there who are overwhelmed and bitter about their lot in life, for me, I am just happy to be alive, able to work and able to enjoy life's every day beauties. I have technology and scientific research to thank for that. I feel that I am living in life's bonus round and I am grateful for that. (I save my bitterness for politics)
I agree, Meinuk! Marvin often says he's living on "borrowed time." (His father died in 1971 of kidney failure -- long before dialysis was an option for ALL and not just the fortunate, affluent, select-few.) We love life -- even with Marvin's daily dialysis in it. No bitterness here -- just a tremendous gratefulness that dialysis is an option (as is transplantation) for Marvin.
That is still BS. I would rather be on dialysis than be dead. Duh. My life is not what it was before, but we do pretty much the same activities. As a matter of fact, my kids think I am the bomb and my husband does too! I waterski, wollerblade, walk my dogs, play with my kids, work at our office and work at home. I am never surprised by your negative comments and statistics Stauffenberg but just as in society you cannot group all people into one catagory, neither can you group all dislysis patients into the horrible hell hole you make it out to be. Leave me out of that stat thank you very much. I am glad you are well on your transplant, and someday soon I hope to be too. But, not all of us are that depressed or sick.
Please leave Marvin out of your stats, too, Stauffenberg! No depression for him. He's happy, well-adjusted, busy, active, and a contributing member of society -- even after 13 years and two months of dialysis. When someone asks Marvin, "How are you doing?" he has two responses. Sometimes, he'll say, "Much better than I deserve," and sometimes he'll say, "If I got any better, I don't think I could stand myself." He's sincere when he says these things. Life, at least for Marvin and me, is good -- very, very, very, very good.
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One simple statistic speaks volumes: of those patients on dialysis who are in the normal working age, only 30% actually do work. Look at Kevno's eloquent description of how he cannot get his life together between the constant cascade of hemodialysis treatments. Look at the thread where people describe all that they have lost on dialysis. Just look at the title of this entire message board. The situation for dialysis patients is truly bleak.
When I was a university student in Germany part of my training required me to conduct statistical field work at a dialysis center. That was in 1985, and I got to know exactly what the patient were going through then in every detail. When I first became a dialysis patient myself and endured that treatment form 1996 to 2005, I experienced for myself every single negative aspect of dialysis I had personally observed and heard patients complaining about twenty years before. While there is always some minor tinkering to improve the experience of dialysis patients in miniscule ways, the fact is that the situation has remained essentially the same for a whole generation now. From 1942 to today, the problem with dialysis has stayed constant: The only method to allow the patient to avoid death is so intrusive on his time, energy, freedom, and health, that it destroys the quality of the life it is extending.
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Are the issues around work an inherent aspect of hemodialysis or a product of the provision of dialysis? I would contend that it is in no small part a product of the provision of dialysis. I haven't seen the latest census data but I believe less than 50% of US units are open in the evening. When you consider that units running three shifts a day can accommodate, at most 33% of their dialyzors during the work friendly evening shift, it becomes clear that incenter dialysis makes it tough to work.
There is also a bias in your data - it only counts paid work. It does not count a full time home maker as employed, it does not count some self-employment, or a full time student and it does not count volunteer activities. Here in at NKC (all units open in the evening) we have about 35% of our dialyzors working by official standards, when we include the other categories we jump up to 55 to 60%. I'm not counted because I have scaled back my union hours to spend more time volunteering, I'll work swing tomorrow and I was down there today but I'd need thirty or so hours a week to make the CMS cut.
It is shortcomings in the provision of dialysis that in large part cause the issues you raise. More dialysis, longer dialysis, more frequent dialysis do not require medical breakthroughs to implement. Medical breakthroughs will impact the provision of dialysis but we know today how to feel well without kidney function.
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Since I am not talking about any particular anecdotal cases or individuals in my posts, all the comments about my supposedly characterizing specific individuals by the general statistics and facts I discuss are absurd and misguided. Of course individuals will vary, as any one who knows anything about statistics and Bell Curve distributions will know. Science is based on what is statistically typical, not on the exceptional or the anecdotal.
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Then if you were to grade the pts on IHD on a curve we would be the exception and you are the one bringing the grade down. No offense, just thought it was funny.
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I think many dialysis patients so much accommodate themselves to their situation that they fail to appreciate how bad it really is in objective terms. To get a more objective picture of how severe a loss life on dialysis represents, consider how a middle-aged person in good health would rate the percentage loss of his quality of life for each of the negative aspects of dialysis:
Huge reduction in life expectancy: - 60% of the quality of life
Highly restrictive diet: - 10%
Perpetual, unquenchable thirst: - 20%
Likely loss of libido or sexual capacity: - 20%
Likely inability to work: - 40%
Morbidities caused by dialysis, from neuropathy to arteriosclerosis: - 50%
Highly intrusive treatment regimen: - 30%
Frequent nausea and vomiting: - 10%
Financial side-effects of dialysis: - 20%
Although different people will weight these factors differently, I think the values I suggest are reasonable. As you can see, they add up to a loss of more than 100% of the value of life, so there is no way that from the objective perspective of a person of normal health dialysis can be regarded as anything other than a catastrophe.
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One simple statistic speaks volumes: of those patients on dialysis who are in the normal working age, only 30% actually do work.
What do you mean by "normal" working age? Please give us a breakdown by age on this statistic.
8)
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Huge reduction in life expectancy: - 60% of the quality of life - OK - HARD TO ARGUE, BUT PUT IT AT 20% MYSELF
Highly restrictive diet: - 10% - I DON'T RESTRICT DIET WITH DOING HEMO 5X/WK, LABS GOOD
Perpetual, unquenchable thirst: - 20% - ACTUALLY YOU LOSE YOUR THIRST THE LESS YOU DRINK, DRINKING OK
Likely loss of libido or sexual capacity: - 20% - FRQUENCY ABOUT 4X/WK - NOT A PROBLEM FOR ME!! >:D
Likely inability to work: - 40% - WORK P/T AT OFFICE AND SHUFFLE THREE KIDS AROUND - CHECK
Morbidities caused by dialysis, from neuropathy to arteriosclerosis: - 50% - ALPORT'S IS MY ONLY PROBLEM
Highly intrusive treatment regimen: - 30% - ANOTHER HARD TO ARGUE, BUT HOME IS BETTER THAN IN-CENTER
Frequent nausea and vomiting: - 10% - NEVER HAD THIS PROBLEM
Financial side-effects of dialysis: - 20% - GET ASSISTANCE FROM MEDICARE AND CO-INS. NO PROBLEMS HERE.
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OK, I'm in, here are my responses.
Huge reduction in life expectancy: - 60% of the quality of life - Yep, everybody's gotta die sometime. Quality - not quantity in my case.
Highly restrictive diet: - 10% - My diet is unrestricted.
Perpetual, unquenchable thirst: - 20% I drink as I want, If I am thirsty, I drink
Likely loss of libido or sexual capacity: - 20% I love sex. No problems here.
Likely inability to work: - 40% I work at least 50 hours a week
Morbidities caused by dialysis, from neuropathy to arteriosclerosis: - 50% Clean slate for me
Highly intrusive treatment regimen: - 30% I'll give you that one, I can't go to London as often as I like. - sucks for me.
Frequent nausea and vomiting: - 10% Nope, maybe once every couple of months
Financial side-effects of dialysis: - 20% Yes, it is a financial burden
I'm going to bow out of this conversation with this, I feel that I am living proof that there have been advances in Dialysis, and I am happy to be alive. Stauffenberg, you and I will alway be at a contretemps as far as our attitudes on this subject. I am a glass half full kind of person, and you are a "those damn incompetent doctors wasted half of my water" person. I'm cool with that. You make me think, and you give a gravity to this forum. We all explore our journey in this life with different views. Until the next time - Peace.
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[I am a glass half full kind of person, and you are a "those damn incompetent doctors wasted half of my water" person.
:rofl; :rofl;
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Of course science is about what is statistically typical BUT to ignore those who fall outside of the "typical" profile is to paint an incomplete picture. " Objective" truth often fails to capture subjective truth and statistics are notoriously poor at capturing the many shades or nuances of the human experience. By all objective measures, healthy people without financial stresses or other major worries should be living fulfilling, contented, achievement-filled lives but the subjective reality is that these people can suffer from depression for example and their reality is indeed bleak feeling. No amount of telling them that they really should be happy is going to mean a thing and is in fact profoundly disrespectful of their struggle. I feel the same about being told that I am basically an idiot or blind or just counting cars since I've chosen not to view my life as catastrophic or pitiful or "100% depleted of value". Ridiculous rubbish. Science has much to learn from the many ways by which individuals manage to rise above the statistical predictions about their situations.
Stauffenberg, I am really curious about what you believe would be the optimal way of coping with this burdensome curve-ball of ESRD that has been thrown us. I don't WANT it. But yet I HAVE it. Would I be better off diving into the pool of anger, resentment and bitterness that some patients do indeed struggle with? Or would I be better off trying to rise above the muck and salvage whatever good I can from the time I have on earth? For me, it's a no-brainer and for my purposes the statistics are unhelpful. This personal, subjective truth does not alter the personal truth of those who feel statistically typical but science has also been known to look at how various coping strategies on the part of the atypical can alleviate even just a little bit the difficulties inherent in any number of situations.
Stauff, I wish you would speak to your personal experiences because those can never be wrong. If you are statistically typical all of us here, I feel sure ,would have tremendous empathy for you and there would be nothing to argue with. I think what is irritating when you quote these stats is that you seem to be implying that those who fall outside of them are somehow delusional and wrong. I would never want you to feel that your subjective reality is insignificant or deluded. All of our experiences are important and all are very real to each of us.
I cannot say that I never feel down. I cannot say that I don't mind ESRD. I cannot say that I never get angry. I also do not intend to allow these feelings to add to my burden and destroy whatever quality of life I can still manage.
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I am a glass half full kind of person, and you are a "those damn incompetent doctors wasted half of my water" person.
OMG that is hilarious and perfectly apt.
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monrein I think you're right about this mythic individual we're being measured against. I think of the guys I work with - urinators all - but they're bitching far more than I every do. Of course it is a bit of a union requirement to bitch but there is a certain baseline of failed marriages, debt and bad choices that in sum diminish their quality of life.
Zach I think the 30% number is pulled from a CMS form that is completed (not always accurately) at initiation of dialysis and my memory is that 62 is the age below which you're suppose to be working. Of course besides the categories of work not captured by that number we'd also have to compare it to the employed rate of urinators which as you move up the age scale to 62 declines. You have to be careful not to compare it to the employment rate which measures those with jobs v. those seeking jobs; rather it would be the number with jobs as a percentage of the entire population. (Anyone who has interacted with sales help knows the employed rate is always higher than the employable rate).
Stauff again and again you're pulling data (suspect data at that) for conventional hemodialysis rather than high dose hemodialysis. I'm beginning to think you want to deny the existence of high dose options. This thread started by reporting data that shows significantly improved outcomes for those who dialyze more frequently. Later this year we'll see some papers comparing nightly nocturnal with living related transplants. Your interaction with incenter dialyzors 23 years ago will have even less relevance. One wonders if you had dialyzed at home nightly what your reckoning of dialysis would be - I believe if you had done your college statistic work in Tassin instead Germany we'd have talk you down from proselytizing about nocturnal.
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... so there is no way that from the objective perspective of a person of normal health dialysis can be regarded as anything other than a catastrophe.
Resilience: Some of us have it, some of us do not.
8)
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I believe that this discussion has in many ways really gone far off of topic. Once again, Bill Peckham has posted a wonderful study showing that survival on short daily dialysis whether in center or at home is associated with mortality rates at the level of cadaveric transplant. That my friends is absolutely amazing testimony of optimal dialysis with minimization of hospitalizations and complications. For anyone that has had a trasnplant after many years on dialysis, you would not have had the opportunity to recieve that transplant without the bridge to life of dialysis. Talk about biting the hand that feeds you!!
So, we understand that there are people that "hate dialysis" yet very few opt out of this option. All that I can say after 15 months of dialysis is Wow, thank God for this modern day miracle. I would not trade the last 15 months of my life for anything. Yup, I can't run a hundred in 10.7 anymore, but my relationships with my God, with my family and with my friends is so much richer than before I had this illness. Yes, medical studies use the unproven QALY as a measure of quality ( and yes it is a hypothetical unproven methodology) yet they have not touched on the preciousness of life one single bit.
So, it is a great puzzle to me why anyone would complain about dialysis if first of all you would have died before recieving a transplant or it has given you 1, 5 or ten or more years of PRECIOUS life now matter how well you felt or not. Yes, life is precious and in my own humble opinion, people that complain about a procedure that gave someone 9 years of life as a bridge to a transplant is not what I believe the correct perspective should be. Thank God for those 9 years whether good or bad so the transplant could be a reality in the first place.
So, yes, if you really hate dialysis, then by all means go for the transplant and be thankful that dialysis gave you that opportunity. The last time I checked, being six feet under is an absolute contraindication to transplant unless of course your doctor's name is Frankenstein. So nine years as a bridge to transplant is something to be thankful for in my own mind. I am sorry that Saouffenberg and others have suffered the many complications that can occur with dialysis, yet during those nine years was there not even one PRECIOUS thing that dialysis allowed you to experience that you would not have had if not for dialysis?
Once again, I would hope that this discussion would return to the very positive news of optimal short daily dialysis which is not even as good as the results of nocturnal daily dialysis yet still as good as cadaveric transplant. This means that as many people that started on this regimen in 2005 at the same time that Stauffenberg had his transplant will be alive in 20 years. To dismiss the MANY, MANY, MANY transplant side effects and only focus on the dialysis side effects is not taking an honest and unbiased approach to these issues.
So, for all those that have had cadaveric or live donor transplants, Praise God. For all those that have chosen the other option of daily home dialysis, Praise God once again who showers us with blessings daily. So, why such hostility over good news on all fronts? This simply puzzles me greatly. The take home message of Bill's article that he quoted is that there are better ways of doing dialysis than the way we do 99% of renal patients here in America. I would hope that we can get back on track with this discussion to the real meat of the article and the message of hope contained in it. If we as dialyzors cannot even come together in agreement on this issue, then how pray tell, shall we convince those that deny us this benefit? United we stand, divided we all fall.
Peter
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P.S.
Bill, where did you get that wonderful picture of croc vs dog? By the way, I thought you were a dog lover?
Peter
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One further comment, second transplants have a very dismal graft survival rate as do certain illnesses such as IgA nephropathy with a 40-50% recurrence rate in the grafted kidney. Couple this with the increased risk of avascular necrosis on top of my underlying risk for prior radiation therapy and the 9% increased baseline risk of cancer in all renal transplant patients let alone myself with two prior cancers leads me to the conclusion that renal transplant for ME is the absolute wrong solution. Yes, for those with diabetes, there may be a definite benefit for renal transplant. Yet for someone with my risk profile, could you really state that renal transplant is my best option? In my own view, daily dialysis is my best choice. Thus, the discussion of which modality of renal replacement therapy that one should choose is an individual risk/benefit analysis. Unfortunately, the real risks and benefits of tranplants have often been compared to the suboptimal American experience with dialyzing for a short death instead of the European, Australian and Japanese experience of dialyzing for life. In such, ignoring the mortality figures of optimal dialysis and instead focusing on suboptimal dialysis figures is very much a straw man argument that our own government is quite good at doing as well. It is in essence a continuation of a massive disinformation program leading all to transplant or die. Wow, that is just plain and simple distortion of the truth of optimal dialysis. So, once again, thank you Bill for bringing us the news of this wonderful testimony of the dedication of these doctors to do that which is right and just for their patients despite an astounding cacaphony of nay sayers. Yes, there are actually some medical professionals that have dedicated their lives to optimizing our health care choices.
Peter
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Zach, I just took a look at your profile and praise God for all of those years on standard hemo. Keep counting resiliant man!!!
Peter
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You might also want to weigh into the scale the loss of quality of life from constant tiredness as a result of anemia, which I would assess as a loss of about 30% in the quality of life; plus sleep difficulties, which represent another 10% loss of life quality; infertility, which varies greatly as a problem among patients, but which is worth on average a loss of 15% I would estimate; and itching, which may be worth a loss of 5% if it is severe.
Another way to make an objective measure of how bad an experience being on dialysis can be is to ask yourself how much money you would pay if you had a billion dollars in the bank to escape from renal failure? I think everyone would answer that they would give every penny. So the problem is worth at least a billion dollars in magnitude.
Most diseases have only one or two of the losses in the two lists I have provided above. Renal failure is rare among chronic conditions in having such a wide variety of horrors associated with it. I have had type 1 diabetes for over 40 years now, which most people would regard as a hideous disease, but having had renal failure as well I would rate renal failure at least 20 times as bad as type 1 diabetes. At least with type 1 diabetes, you can still pass for and compete successfully with normal people, fitting into the world of the healthy; but with renal failure, you are definitely on the outside.
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P.S.
Bill, where did you get that wonderful picture of croc vs dog? By the way, I thought you were a dog lover?
Peter
The answer is relevant to this thread. I work through the carpenters union in a graphics shop, we do signs for tradeshows (I started this career after my two year stint with a transplant and four + years on incenter dialysis). After 13 years making signs I have developed a familiarity with Photoshop.
That's my dog Cairny catching a Frisbee in front of the warehouse where I work (he goes to work with me every day and was not harmed in the making of my avatar). I then Photoshopped him into the the photo of the 'gator that I found on the internet. The message of my avatar is simple - catching the Frisbee is not enough, you have to anticipate what comes next. Whether you're a dialyzor considering a transplant or a government considering a policy.
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I agree ... complaints about conventional incenter three day a week hemodialysis is taking this thread off topic. There is nothing but good news here.
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Dear Stauffenberg,
Perhaps we are making some progress on common ground. Yes, renal disease is associated with a host of terrific complications, yet the numbers that you are using are for the way traditional dialysis has failed to address these issues with suboptimal renal care. I would really advise you to peruse the daily dialysis literature. ALL of the complications you have quoted are improved or completely ameliorated with daily dialysis, especially, long, slow nocturnal, quotidian dialysis. This is exactly the point that Bill was trying to make in the first place with his post that you have not yet acknowledged.
So, lets agree with first the issue of mortality as being equal to cadeveric transplant. This is not a a disuputable fact of conjecture, but 23 years of serious data. Second, take a look at the studies on anemia, puritis, fatigue and sleep disorders all of which have shown excellent treatment with quotidian dialysis. Everything that you are quoting has to deal with traditional dialysis treatment which we ALL agree is terrible. Thus we are in essence simply talking past each other on this.
What you have not yet acknowledged is the effects of quotidian dialysis. We are in essence arguing over apples and oranges. They are two different issues entirely.
So, once again, thank you Bill for posting the article on daily dialysis. It's time has come.
Peter
P.S. Take a look at Bill's site tomorrow for information on daily dialysis and pregnancy. Once again, all the issues that you are bringing up have absolutely nothing to do with optimal dialysis which is more frequent (daily), longer (6-8 hours) and slower. Yes, the time for quotidian dialysis has come.
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I still have kidneys functioning at 25%. Someday I am told they will fail completely.
After reading through this thread, I am really at a loss in deciding on dialysis vs transplant.
If what you are saying is true regarding daily dialysis at home being just as good as a transplant, then what is with these governmental entities
deciding to stick with this 3 days a week for 4 hours each time! The studies clearly show more dialysis time is needed and is far more beneficial
for quality of life. Doctors are also always pushing for transplants because they know that with the standard 3 day a week regimen, quality of life
is likely reduced. I think it all comes down to money. The Insurance Companies and the Government simply don't want to pay for it. Transplants are cheaper than dialysis
in the long run, so they push for transplants. And they sure don't want to pay for anyting but the bare minimum for survival when it comes to dialysis if a transplant
doesn't happen. I can't figure out why all these genius scientists still haven't figured out how to produce a dialyser machine the size of my purse so I can
carry it with me anywhere and not have to worry about being back at "point A" to hook up to a machine. I've still got the rest of the world to explore and
being hooked up to a machine does NOT fit in to that equation. And I don't especially look forward to all the risks involved with a transplants either.
So, someone please invent that purse-sized dializer for daily dialysis and I will take it with me to the Amazon forest.
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Wow guys, 5 pages of replies in a week!
Rolando becomes increasingly unhappy with spending 4 1/2 hrs in a dialysis chair 3 times a week. I have anticipated that this will drive us to NxStage at home at some point and we are there. We are aggressively pursuing our options now. I had always expected that it would simply be a tradeoff of one modality for another - a labor intensive, stressful, and difficult one (that's my fear of the unknown you are seeing and for Rolando he will most likely have to have an access implanted).
But, seeing this thread, I see that it is way more - a change in modality where outcomes rival cadaveric transplants! Bill, thank you. Your post gives us that little burst of energy and optimism that will make our pursuit a little easier.
Is there a link that will give us the whole article for free?
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aharris2, I agree with you. If gives me great hope to know that daily dialysis can equal a transplant. For some, a transplant may never happen. So this new research is a great beacon of light. My neph actually talked with me about this very thing last week. I like reading stats like this. :2thumbsup;
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Hemodoc: I was on a daily home dialysis regimen for a while, and the whole statistical propaganda picture of what a wonderful, Disneyland experience the entire thing would be was presented to me by the team of nephrologist/idiots at my dialysis center. While the results I was shown (in 2003) were much better than for conventional dialysis, they were still not as good in terms of morbidity as were those of even cadaveric transplants, even though they were comparable in terms of mortality. A patient with severe rhabdomyelosis, neuropathy, amyloidosis, and atherosclerosis from years of daily dialysis may not be dead, but he is definitely not as healthy as a transplant recipient and he does not, by the end of his lifespan, have anywhere near as many QUALYs as does the patient with a transplant.
The decisive factor is that the intrusiveness of having to slave over my own dialysis machine six days a week for treatment and one day a week for cleaning, plus dealing with the hassle of maintaining the inventory of supplies, was itself an incurable, chronic 'disease' every bit as bad as being confined to a wheelchair. After just a few weeks of enduring dialysis coming into my own home and taking over my life I found I could not endure another minute of obsessive-compulsive dialyzing, and so returned to in-center hemodialysis for a few months prior to my transplant.
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Dear Stauffenberg,
I am truly sorrowed to hear of all of the complications that you have endured. I believe that you spoke earlier that you are also diabetic which would also possibly account for some of those complications. As I stated in an earlier post, transplant may indeed be the best option in patients with CKD 5 as the data indicates.
Once again, I believe that all need to do an individual risk/assessment of their own unique situation and then decide for themselves which is the best choice for renal replacement therapy. I don't believe that there is a one size fits all sort of option out there.
I am pleased that you have done well with your transplant and I pray that you will get many more years out of it.
God bless,
Peter
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Obviously, daily dialysis isn't for everyone, and just because it didn't work for one person, doesn't mean it won't work for another. That's the way it is with all renal replacement therapy. For some (like me) the "slaving over my own dialysis machine" is really no big deal, because it's so much better for me then in-centre dialysis. Once again, there is no CURE for ESRD, and transplant is a TREATMENT that works great for SOME, but not for ALL. Like others have said, Stauffenberg, I'm very glad your transplant is working well, and I'm glad you don't have to deal with dialysis right now, because it's obviously not the right treatment for you, and I hope maybe you'll never have to go back on dialysis. But you really need to stop putting others down because their chosen form of renal replacement therapy is different from yours. And, see, I'm even saying it nicely this time.
Adam
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So much has changed since I was on dialysis the last time and I found the information posted here to be very helpful as I navigate my options this time around. I am looking into nocturnal dialysis at the hospital as one possibility because I like the idea of better clearances whether I get another transplant or not. What is key here I think is that transplant isn't for everyone for many different reasons and this paper presents good alternatives with better outcomes to the standard 3 times per week. I did home hemo from 1980-1985 and found it freeing in comparison to in-center.
Hemodoc, could you refer me to some good information about second transplants? That is what I am facing and have never before heard that the graft survival rate is dismal. That is discouraging for me but I do want to be as fully informed as possible, to know how dismal is dismal and not end up like Bill's dog, dodging alligators. LOL.
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It is interesting to compare the evolution of diabetes therapy with renal therapy. In both cases, the initial phase saw both patients and the medical profession praising the treatment -- insulin in the first case and dialysis in the second -- for its wonderful, life-saving quality. Patients were grateful to this marvel of modern medicine for saving their lives.
But then, in the second phase, as patients and a very few enlightened physicians recognized, the treatment itself came to be seen as the problem. Life on injected insulin was disrupted and dangerous; life on dialysis was onerous and burdened with medical complications, so the patients came to hate insulin and dialysis, rather than regarding them primarily as salvation from death. Thus you have today in diabetes the group, "Society for an Insulin-Free World," which instead of praising injected insulin hates it as a primitive therapy for diabetes which has to be overcome. In renal medicine you have the group, "I Hate Dialysis," which has come to hate not renal disease but the onerous treatment which is its modern manifestation.
The counter-attack against these movements in diabetes and renal medicine has been for the forces of conventional medicine to insist that everything would be better if only the hated treatment were applied ten times more onerously than it has been in the past. So in diabetes you now have intensive blood sugar control with patients pin-cushioning themselves to death by perpetual blood sugar measuring and insulin injecting until there is nothing left of their lives free of medicalization. In renal medicine you have the exact parallel of everyday dialysis, medicalizing every single day of the patient's life in order to make it better, at least in the view of the people who will never have to go through this type of treatment themselves.
The fact remains, however, that in both of those diseases, the treatment has itself become the disease. People don't say as often that "I am a renal patient" as they do "I am on dialysis."
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I don't think anyone here is saying they "love" dialysis. Everyone who is on it (except maybe some extremely weird people) hates it. I know I do, but it's just the fact that we NEED it that makes us hate it. I am extremely grateful for this "primitive, intrusive treatment" because it allows me to live. Ultimately, it's ESRD itself that I hate. This being said, this will probably be my last post in this thread. Staufenberg is obviously too closed minded to realize that everyone is different and dialysis may be just right for some. Oh, well.
Adam
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I hate exercise, but I still do it. I hate obeying traffic laws, but I am glad they exist, and I do my best. I am not crazy about eating vegetables. I would enjoy smoking if it wasn't deadly. There are so many things we do that we "hate" because it's prolonging our lives. That's life, get used to it!
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Sorry folks. I, for one, do not hate dialysis.
Hate takes too much energy to sustain. I'd rather put that energy to good use: my work.
Can I still be a family member of IHD?
8)
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Sorry folks. I, for one, do not hate dialysis.
Hate takes too much energy to sustain. I'd rather put that energy to good use: my work.
Can I still be a family member of IHD?
8)
I vote "YES!" :-*
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:-*
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Dear monrein,
Yes, to define "dismal" in terms of Bill's dog vs croc is quite dismal indeed and I would readily have to admit that even the most "dismal" stats on retransplantation are much better than what appears for Bill's dog.
As far as the decision for individual retransplantation risks and benefits, several factors should be considered. Living vs cadaveric is better as in primary transplantation. Secondly, I should modify the term dismal as "historically dismal" since as in all areas of medicine, much progress has been made here as well, yet the facts are that the second transplant has a lower graft survival in general than a primary graft.
I have done a quick search and I am actually surprised to have a relative paucity of published studies on second or even third graft survival rates. However, I suspect that your transplant center has unpublished data on this issue and as in all individual cases, discussing this as part of the informed consent procedure with your own transplant surgeon is where you should go for the best information with someone that likewise knows all of the details of your case and can put together the risk/benefit and alternative profile that should be a part of any medical decision. You may find that you still like the odds of a successful second transplant and again, I am not here to deter anyone from what they believe is in their best interest, but I truly believe in a true informed consent where as much as is possible all issues are discussed openly and honestly and without bias as much as possible. Bias is very hard to overcome and I am sure that the transplant surgeons will most likely tell you that transplant is better in ALL cases, where that may not necessarily be the case.
You should really know that surgeons like to operate so take that bias into consideration as well especially when they have a probablity of a high rate of success. This is even more true at an academic medical center where young fellows are seeking to get as many operations done since that is one of the requirements to pass their boards. Surgeons and internists have a different path where surgeons to become board certified must present a list of the surgeries that they have performed during and after finishing their fellowship. It truly does take a bold person to complete and do well in this field and my hat is off to them. We do have some very talented people doing renal transplants across our nation.
Nevertheless. Here are a couple of studies that I was able to find:
1) Repeat organ transplantation in the United States, 1996-2005. - Magee JC - Am J Transplant - 01-JAN-2007; 7(5 Pt 2): 1424-33 (From NIH/NLM MEDLINE)
https://ive-crdc.kp.org/das/citation/body/94915516-4/jorg=journal&source=MI&sp=19610020&sid=706193037/N/19610020/,DanaInfo=www.mdconsult.com+1.html?issn=1600-6135
2) Living-donopr kidney retrnasplantation: risk factors and outcome (Egypt)
http://www.blackwell-synergy.com/doi/pdf/10.1111/j.1464-410X.2004.04934.x
3) Factors influencing second renal allograft survival
http://ndt.oxfordjournals.org/cgi/reprint/14/3/566.pdf
I hope that this gives you a little bit of information to start your own study on this issue but please also remember that when a study states that retransplantation is better than dialysis, it is the usual, 3 day a week suboptimal dialysis that they are quoting.
May God bless,
Peter
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Peter...seems like I read somewhere that about 50% of cadaver transplants fail within the first two years. What's your opinion as to the disparity between cadaver and living donor transplants?
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Thanks very much Peter for your thoughtful reply. I was unable to access the first link but no matter, the other two are helpful in guiding the questions I will have when the time comes. I seem on the surface to be quite a good candidate for retransplantation on a couple of counts. First we are hoping for a living donor and I have four being tested initially and a couple other back-ups should those not pan out. Secondly, my first transplant was cadaveric and has lasted over 23 years with no rejection episodes of any kind. Even now, it is failing due to long-term cyclosporine use not rejection per se and so that is apparently good news on the retransplantation front.
I did well on standard hemo last time but am hoping to improve on that with more dialysis if I can work that out with my team. Thanks Peter for your help as I navigate the croc swamp.
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I'm wondering where PD fits in all this... It's daily dialysis, but I've never heard that it has better results than in centre hemo. Does this mean that home hemo is a better option than PD in terms of life expectancy? Or does it just mean that there hasn't been a study on PD life expectancy yet?
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Dear flip,
Sorry to not get back sooner, I believe that the survival stats for living donor vs cadaveric is actually better than 50%. UNOS and other specific centers have stats for these which I believe are in the 70-80% range at 5 years, but I did not yet get those figures specifically. So, yes, Stauffenberg is correct that for the right patient, transplant is an excellent option.
Peter
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50% in five years sounds like expanded-criteria donor (ECD) kidney failure rates.
8)
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The OPTN report gives all the information at to first, second tx and well as a host of other things at time of tx.
http://www.optn.org/AR2005/survival_rates.htm
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My husband DOES NOT hate dialysis!!! Sure some nights he wishes he didn't have to hook up to a machine but how many people have mornings they wish they didn't have to get up to go to work!!! He is thankful everyday for dialysis treatments and being able to live a fulfilling life with it. He does not live his life thinking about dialysis or having to be hooked to a machine. Instead he thinks of dialysis as a part of his life and without it he would have no life.It is just a normal bedtime routine to set up the machine and put needles in his arm. If you look through this board you will se a lot of people that have been on dialysis for lots of years. My husband eventhough he is on nocturnal home hemo still watches his diet and fluid intake. Basically we both watch our diet for a healthier lifestyle.
I have asked for studies that have been done on nocturnal hemo and was told there aren't any!!! It is too new for studies to be done but that people who are on it are doing exceptionally well. Check out www. nocturnaldialysis.org
Dialysis is a treatment of choice. What works for one person may not work for another. Some people choice not to have any treatment . That's their choice.
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I ditto, ditto, ditto every single thing Del said in her latest post (except substitute my husband -- Marvin -- where she spoke of her husband).
Marvin doesn't HATE dialysis either. Now, he doesn't love it -- although there are days when he says, "I'll be so glad to get on that machine," but he says this because he knows he'll feel better after a treatment. He didn't choose ESRD, but he got it. He chose dialysis because he didn't want the alternative. He chose home hemo (6 x week) because that was the best modality of treatment for him (although we both want to check into nocturnal home hemo). The three hours he's on the machine each day, yes, he could be doing something else -- if he didn't have ESRD. But, he does have ESRD and those three hours on the machine give him 21 other GOOD hours in EVERY day. (And, the other 21 hours, he doesn't think about dialysis much. He says the other 21 hours are for living life to the fullest. The dialysis is a small part of his day and his life; it doesn't control him or consume him.) To him, that's not a bad trade-off.
Marvin started dialysis in March of 1995, and he's been on home hemo since July of last year. He's doing the best he can (including a GREAT attitude about it) with the hand he was dealt.
To me, it's a matter of accepting your fate, making the best choices for YOU, and keeping a happy spirit about it. Marvin's famous words are "It could be worse...."
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Petey, how many times have I heard those words come out of y husband's mouth "It coukld be worse" or "there are a lot of people who would change places with me any day" A buddy of his had a stroke about 5 years ago when he was about 55. He can't talk or get around very well. I bet if he was asked to have a choice between doing dialysis for the rest of his life instead of the stroke he would choose dialysis. How often have I said when I know someone has terminal cancer - bet they wish there was something like dialysis for them. We usually don't think about dialysis either until it is time to hook up in the night. I really thing you and Marvin would really like nocturnal petey!!
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del, I think we'd like nocturnal home hemo, too. It's just that it's not offered any where in our area right now. Hey -- they just started home hemo last summer, and Marvin and I were the second couple trained at the clinic in Wilmington, NC (we had to transfer from our smaller clinic to the Wilmington clinic -- 60 miles away -- just to get in the training!). Hopefully, it will come to our area soon, and you better believe that Marvin and I will be the first in line!
Petey, how many times have I heard those words come out of y husband's mouth "It coukld be worse" or "there are a lot of people who would change places with me any day" A buddy of his had a stroke about 5 years ago when he was about 55. He can't talk or get around very well. I bet if he was asked to have a choice between doing dialysis for the rest of his life instead of the stroke he would choose dialysis. How often have I said when I know someone has terminal cancer - bet they wish there was something like dialysis for them. We usually don't think about dialysis either until it is time to hook up in the night. I really thing you and Marvin would really like nocturnal petey!!
People look at Marvin kind of strange when he makes the comment that he's "lucky." He thinks he is truly lucky because dialysis has kept him alive for over 13 years. We have had quite a few friends and family who have died of cancer, heart attacks, and other terminal diseases in the last 13 years. Every time we lose one, Marvin says, "I know they'd trade places with me -- dialysis and all."
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As someone who has experienced both sides of this issue, I must say that although I appreciate Dialysis technology, I believe it has stolen too much from my life. To me personally, a kidney transplant would give me back my freedom as an individual. I haven't seen my parents, my sister or her kids in years because of kidney Dialysis. I'm tethered to the clinic and it affects everything in my life. I can't travel (I don't trust strange Dialysis clinics) and women won't date me because I'm on six day a week treatments.
I'll suffer through the trials of immunosuppresssives and an ugly scar if it allows me to truly live the life I deserve and desire.