Daily dialysis outcomes rival a cadaveric kidney transplant

[kidney4traci]

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. 

[stauffenberg]

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.

[Zach]

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.
 

[kidney4traci]

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!! 
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.

[Meinuk]

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.

[kidney4traci]

[I am a glass half full kind of person, and you are a "those damn incompetent doctors wasted half of my water" person. 

 

[monrein]

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.

[Bill Peckham]

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.

[Bill Peckham]

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.

[Zach]

... 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.
 

[Hemodoc]

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

[Hemodoc]

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

[Hemodoc]

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

[Hemodoc]

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

[stauffenberg]

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.

[Bill Peckham]

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.

[Bill Peckham]

I agree ... complaints about conventional incenter three day a week hemodialysis is taking this thread off topic. There is nothing but good news here.

[Hemodoc]

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.

[Sunny]

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. 

[aharris2]

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?

[paris]

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.   

[stauffenberg]

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.

[Hemodoc]

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

[Adam_W]

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

[monrein]

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.