You're lucky if you make it to D

[MooseMom]

Apologies, but I can't figure out how my new laptop cuts and pastes links, so I'll just say that Zach had posted a link to pbfluids.com, and after going to that site, I wandered around it a bit (it's a blog by a nephrologist in Detroit) and found a piece on hyperkalemia as an indication for dialysis.  He asserts that the "vast majority" of CKD patients die before complete renal failure, and I have to wonder...why?  Firstly, I guess that all of you on D are supposed to be grateful that you made it this far, and secondly, if complications and death before D are so prevalent, is it because people don't get good pre-dialysis care?  Even my own neph told me that I wouldn't die of ESRD but, rather, from complications (that was a fun conversation), and it made me wonder which complications are more treatable and/or preventable than others, and which are ones from which there is no escape? 

[Quickfeet]

My neph said that I would mostly like die of anything but my kidney failure. Some examples; getting hit by a bus, heart attack, stroke, etc.

But as far as the complications. We have to take good of our vascular system. Because of the phosphorus problem we need to worry about calcium being removed from our bones and then getting deposited in our blood vessels. I will have to stop there. Just thinking about all the things that can go wrong is going to drive me crazy.

[monrein]

MooseMom...you're driving yourself nuts again.  Yep, we're high risk.  Lots of things out to get us.  We do need to educate ourselves on how best to minimize our risks by taking control of the things we can then we need to put that knowledge into action and then we need to work on getting on with living our lives. 
Zach, who posted this link, is an outstanding example of this.  "Living a life, not an apology".  Well said and well done!  And he's not finished yet, not by a long shot whatever the hell the "statistics" might predict. 

The overriding complication of ESRD is exactly the same one involved in simply being alive and it's not preventable.  The complication of being born is that we die.  There is absolutely no escape from death...but from here to there we have to figure out how to free our minds from unproductive worry.  Eating too much potassium or fatty foods or salt or sugar or any of the other things that we know don't contribute to our health, can and likely will produce complications.  Same goes for smoking or not exercising to the full extent of our capabilities or carrying too much weight.  Much of this is also true for the general population...it's just that much more crucial for us and we have to be smarter than the average bear in understanding medical results and keeping on top of appointments.

Now, you need to turn off your brain or else you won't be having trouble with inescapable complications...you'll have driven yourself completely mad.

[jbeany]

the "vast majority" of CKD patients die before complete renal failure, and I have to wonder...why?   

I think you are misunderstanding the terms he's using.  Remember, most patients start D long before "complete" renal failure.  Average function level for starting is about 15%.  They don't spend a lot of time and effort to track the percent of function left once you have reached a low enough level to need D.  So you could be on D for 10, 15, even 20 years before you reach "complete" or total renal failure - i.e. 0% function.  After that long on D, you are likely going to develop side effects and serious complications that can be fatal.

[cariad]

MooseMom...you're driving yourself nuts again.

Sorry, MM, going to have to agree with Monrein on this. Stop looking for the proof that you're going to drop, and start looking for the proof all around you that this is not an insurmountable challenge.

You kind of remind me of myself with my kids, especially the first. I am not especially proud of this, but I was sooooo very convinced that I could not possibly have a healthy child, that even after the amnio came back all clear, the weekly ultrasounds showing no morphological concerns, with all the drugs I was on, there had to be some horrible disease in this boy's future. When you are on the Internet trying to research early signs of progeria, it is time to either unplug the damn machine, or go get yourself fitted for that comfortable yet upmarket straight-jacket. I chose to give it up and enjoy having the kids and take it as it comes. (They don't have progeria, by the way. It manifests by age three, and the baby turns four next week.)

I think jbeany gives a nice interpretation of what is probably being said here. Besides, really, can't stress this enough, stats are made for large populations; they don't apply to the individual.

[MooseMom]

I know I can drive myself (and all of you crazy), but in this particular instance, I was actually looking for information.  Whenever I come across articles about the risks inherent in CKD (and many of these articles show up on IHD, thanks to Okarol's hard work), there is rarely any information about how these risks can be minimized, and I find this to be rather irresponsible journalism.  I am NOT looking for proof that I am going to drop (although to be fair, many of my angst-ridden posts give that exact impression); I have worked hard to keep myself as healthy as possible, and I frankly am proud of that, and thanks go to my neph who has overseen my treatment.  While you say that we need to take control of the things we can, I would simply like more education on what those things are.  (I know that potassium, phosphorus, calcium and anemia are important things to watch, and I understand how problems in these areas can be mitigated).  Which aspects of CKD can we influence/control (I know a few, like bp, lipids, etc for which we can take meds and watch our diets) and which are more difficult to treat/prevent?  Take LVH...it's supposedly so common in folks like us, but then what?  Can that be treated?  Does exercise prevent it?  Who gets it and who does not?   Believe it or not, I ask these questions not because I am convinced all of these awful things are going to happen to me, rather, I am intellectually interested.  If I had it all to do over again, I probably would have gone to med school.

For once, I can honestly say that this is not an exercise in unproductive worry.  I'm just truly curious and would appreciate any information given in layman's terms.  I keep thinking of poor Galvo whose recent heart surgery showed "horribly calcified" cardiac vessels.  How could that have been prevented?  Can these calcifications be removed?  I'm just really curious, that's all.  Doesn'nt mean that I am convinced that the same thing will happen to me.  I'm not a complete nutcase all the time, believe it or not!

[monrein]

Here is one link  http://www.nursingcenter.com/library/JournalArticle.asp?Article_ID=586738  and there are many others if you do a Google search of something like...minimize risk complications of kidney disease...having said this, IHD is one of your best resources because all the complications are being experienced or being minimized by members here.  And they come up in threads all the time...I'm post transplant for the second time but still come here to get important leads or heads up on things to be aware of...as well as to give back anything I can to people who are newer to this bumpy twisty road.
You are are a smart, curious and meticulous cookie...you are able to decode the medical jargon and grasp the essentials (not everyone is so lucky) and you care about the consequences of ignoring the important stuff we can control (not everyone is so lucky).  Most of all, you're tenacious and don't give up easily (that's a nasty aspect of depression, one of the common accompaniments of ESRD) so you've got the tools.  I know you can do this...whether you know it or not , it is just a matter of time until you're juggling most, if not all of the balls.  I too wish you didn't HAVE to do this particular course of study but you do and I do and we all do...so we can and we will.
 

[cariad]

Never thought you were a "complete nutcase", MM, promise. As I've said, I have done it and worse to myself. I guess I was responding to both of your posts on the subject, this one and the one in Zach's thread, in which it sounded for all the world like you were letting this drive you to distraction. I also wouldn't take what one nephrologist in Detroit says too seriously, ever. I had a real charmer of a nephrologist lecture me that I would DIE DIE DIE of graft vs. host if I pursued the clinical trial that I went through in March. He was also mad for stats and quoted all of them, never realizing that I have a strong stats background and could recognize instantly that he had not the first clue what those stats were actually saying. Your garden-variety nephrologist will not necessarily know how to interpret statistics, look for biases, look for fiddling the data.

And I am not trying to insult this doctor from Detroit - I'm sure he's fine at his job, but nephrologists disagree all the time, and there's a reason: sometimes the answer is far from clear.

I cannot help with the information side, but Monrein seems to have provided you a good starting point. All luck to you.

[cookie2008]

You can and will live a long life on D.  Some patients go into denial in the beginning right before they start d. My father did he kept telling us he had the flu he didnt the doctors told us he was lucky maybe 2 more days and he would have been gone, they worked miracles with him and he eventually had a transplant.  The more info you get is good but also it can make you worry more.

[RightSide]

While you say that we need to take control of the things we can, I would simply like more education on what those things are.  (I know that potassium, phosphorus, calcium and anemia are important things to watch, and I understand how problems in these areas can be mitigated).  Which aspects of CKD can we influence/control (I know a few, like bp, lipids, etc for which we can take meds and watch our diets) and which are more difficult to treat/prevent?  Take LVH...it's supposedly so common in folks like us, but then what?  Can that be treated?  Does exercise prevent it?  Who gets it and who does not?   Believe it or not, I ask these questions not because I am convinced all of these awful things are going to happen to me, rather, I am intellectually interested.  If I had it all to do over again, I probably would have gone to med school.

For once, I can honestly say that this is not an exercise in unproductive worry.  I'm just truly curious and would appreciate any information given in layman's terms.  I keep thinking of poor Galvo whose recent heart surgery showed "horribly calcified" cardiac vessels.  How could that have been prevented?  Can these calcifications be removed?  I'm just really curious, that's all.  Doesn'nt mean that I am convinced that the same thing will happen to me.  I'm not a complete nutcase all the time, believe it or not!

I think you're absolutely right to ask what can be done to make yourself as healthy as possible.  That's something you should discuss with your own neph and dietician.  They've seen your blood tests; if anything is too far out of whack, they will tell you, believe me.  Because in my experience, that's their main tool; they prescribe meds and lifestyle changes that will bring your out-of-range blood test numbers back into reference range.

As regards calcification of the soft tissues:  It's like walking a tightrope, trying to avoid secondary hyperparathyroidism on the one hand, and avoid calcification on the other.  Too much calcium (and/or too much phosphorus) and the calcium and phosphorus will combine to form a mineral substance that gets deposited in the tissues.  Not enough calcium and you could end up with secondary hyperparathyroidism, with itching and bone pains.  So you and your medical team are constantly juggling your vitamin D (Zemplar), calcium and phosphorus, tweaking here, tweaking there.  A number to watch out for is the calcium-phosphorus product; if either the calcium or phosphorus levels are too high, then their product will be too high.

Too little vitamin D and your PTH could also rise, causing secondary hyperparathyroidism.  Too much vitamin D and your PTH could fall to a level that's too low for you, causing adynamic bone disease.  Keep walking that tightrope!  Don't look down!   

Can good old atherosclerosis be prevented?  My neph has me on low-dose aspirin, and my dietician has me on fish oil supplements.  They're worth a try.   So is exercise to strengthen the heart.  A cardiac stress test will show how your heart does under stress.

Another thing to watch out for is dialysis-related carnitine deficiency.  L-carnitine is a lightweight molecule, easily dialyzed out of your blood by any good dialyzer.  I take L-carnitine supplements to replace the lost L-carnitine.

Dialysis patients can suffer from other dietary deficiencies too, both from the restricted diet and from the dialysis of nutrients out of the blood.  Many dialysis patients are deficient in B vitamins and in the minerals zinc and selenium.  I take a renal multivitamin w/zinc (Dialyvite), and I also take a selenium supplement daily.

I didn't do any of these things on my own. 
Rather, my obsessive-compulsive neph and dietician are constantly looking for how they can fine-tune my health.  What I've written here represents their best thinking to date.

Hope this helps.

[MooseMom]

Yes, Rightside, that helps a lot, and I'm pleased to say that I am already on a low-dose aspirin regimen; I also take fish oil and high doses of folic acid to combat cardiac inflammation.  My neph and I take great pains in constantly tweaking things that need to be tweaked and looking closely at labs for trends.  I understand the consequences of phosphorus/calcium imbalances.  I guess I know more than I thought I did.  cariad, you are absolutely right about the perils that come in allowing statistics to mislead nephs into making clinical mistakes treating individual patients.  Likewise, as a patient, you mustn't allow yourself to do the same.  The Detroit neph did make one good point; he said that one CKD III patient may have a more aggressive disease than another CKD patient and will need to have a different treatment plan.  Monrein, good suggestions, and IHD is one of my primary sources for information.  All this being said, however, it does bring me back to what I meant to be the original query, which is why do so many CKD patients die before they get D?  Is there not enough education on renal disease and what it means?  Are patients not being referred to nephrologists frequently enough?  Most of us here on IHD are driven enough to seek out information on the web, so we are probably better advocates for ourselves, but if it is true that "the vast majority" of CKD patients die before they are deemed impaired enough to dialysis, this just seems criminally negligent!  How do these patients get so far gone?  I was just amazed by this information!

[Zach]

All this being said, however, it does bring me back to what I meant to be the original query, which is why do so many CKD patients die before they get D?  Is there not enough education on renal disease and what it means?  Are patients not being referred to nephrologists frequently enough?  Most of us here on IHD are driven enough to seek out information on the web, so we are probably better advocates for ourselves, but if it is true that "the vast majority" of CKD patients die before they are deemed impaired enough to dialysis, this just seems criminally negligent!  How do these patients get so far gone?  I was just amazed by this information!

I think some of the answers include:

 ... CKD can progress very slowly over many years and in fact never reach CKD-5.
 ... Patients die from other illnesses or complications, i.e. cancer, cardiac arrest, stroke.
 ... Some people are not referred to a nephrologist early on.
 ... Some patients refuse to start dialysis.


If you read some of the research referred to in the blog, the majority of patients were age 70 and above.

The patient example in the blog had a Potassium of 8.6 and could have died of a cardiac arrest before her first dialysis--but she was saved.

This is the patient description in the blog:

A few weeks ago we admitted a patient who has been approaching ESRD for a number of years. Most of her medical care had been provided in the hospital as she bounced from admission to admission. Though we tried to get her into our CKD clinic she always failed to show up. You can track the progression of her CKD from hospitalization to hospitalization with a gradually increasing baseline creatinine.

On this most recent admission, she came in with the triple 8s:
Hemoglobin 8.8
Creatinine 8.1
Potassium 8.6

Perhaps this patient thought she knew better than the nephrologist in the hospital about when to start dialysis, and she almost died.  I'm sure that there are some who do die by delaying the start of their first dialysis treatment.

There are many reasons for the nephrologist's statement, "End-stage renal disease is an exceptional, not a routine outcome of CKD.  The vast majority of patients with CKD ultimatly expire of something other than renal failure."

Maybe you can eMail the nephrologist who writes the blog and ask him?  Might be an interesting exchange.

 

[MooseMom]

Actually, Zach, I did leave a reply on his blog asking these very questions.  I haven't checked back yet for a reply, but I will.  The patient you mention obviously was negligent of her own care, and self-negligence is, I'm sure, one of many answers to the question.

Just checked...no reply yet.

[okarol]

Paging Dr. T! 

[nephron]

And I am not trying to insult this doctor from Detroit - I'm sure he's fine at his job, but nephrologists disagree all the time, and there's a reason: sometimes the answer is far from clear.

No insult taken.

I write my blog http://pbfluids.com for kidney professionals but I understand that all sorts of people end up reading it and that's fine with me but you got to understand I don't pull any punches, I don't soften the truth like I might in a face to face meeting (though I'm a pretty straight shooter face to face).

In terms of the blog post inquestion, you can read it here http://www.pbfluids.com/2010/05/hyerkalemia-as-indication-for-dialysis.html. What I'm saying about the fact that dialysis patients are survivors is not earth shattering or controversal. The best data we have on the prevalence of chronic kidney disease comes from NHANES data by Coresh published in JAMA. See http://jama.ama-assn.org/cgi/content/abstract/298/17/2038

I uploaded the key figure. Look at the far right column: 15.5 million people with stage 3 disease and only 700,000 with stage 4 CKD. What happens to those people? Almost all of them die without ever progressing to stage four disease. This can be viewed as success, these people have avoided progression of dialysis. The table does not include dialysis but I believe there are 380,000 people on dialysis (HD and PD) so only half the number of stage four.

I hope this helps. I would be happy to answer other questions.

[MooseMom]

Nephron, thank you so much for joining us!  I do have a question...  The people that do not progress from CKD 3 to 4 before dying of something else...what kills them?  I suppose that if the fact that so few progress to stage 4 is viewed as a "success", then should we assume that these people are not dying of complications of renal insuffiency? 

We don't need anyone to "pull punches" as we deal with the reality of CKD every day.

I'm thrilled that you addressed this on IHD...thank you so much. 

BTW, when I first began vigorous treatment for my fsgs 6 years ago, my cholesterol was (gulp) 550!  My PCP told me that without treatment, I could eat cardboard for the rest of my life and it wouldn't make any difference.  But with my meds, my cholesterol is a fabulous 155 and has been well controlled for years now. 
Michelle

[silverhead]

I guess I could do a lot of semi-educated guessing as to why so many may not make it to D, but can only relate what happened to us (Sharon really, but I am part of the team), she progressed through all the stages of CKD without our being aware of it, but we blame many medical professionals who apparently did not have the training to recognize what was happening to her. It mainly began with low back pain, and several primary care physicians treated her for the pain and did not see that she had chronic bladder infection (no symptoms showed) that led to severe scarring of the ureters to a point that the kidneys shut down, it took a nurse in the ER to see that  her Creat was over 11 to finally point us in the right direction as far as treatment was concerned, of course by then she was stage 5 and Hemo started right then and we have been fighting for 5 years to get her better.
On a semi related point, she just underwent Moe's surgery for basil cell carcinoma on her left arm and several places on her face, the cancer on her arm was looked at by several different general practitioners and not one of them thought it was anything to be concerned about, I finally demanded we be referred to a Dermatologist and he immediately diagnosed it as cancer,and a biopsy proved it, but thankfully it is the mildest form, so it was easy to treat, but another valuable lesson learned, if you are not comfortable with the answers you are receiving, move up the chain as best you can.......
Tom

[The Noob]

MooseMom, you don't bother me with your questions. i have been a homeschooling parent of 5 children for over 15 years. all in college but son at home not there yet. oldest son getting his MBA as we type.
i have also taught homestead and farming skills, animal training, etc and in march picked up my 10 yr AA token. so i've sponsored many along the way.
you are simply doing what is called "Interest-based learning". your enmeshing yourself in the subject fully. may look compulsive to some but its real learning. after a bit you'll really know your stuff and have confidence in that. you'll read an article and finish the sentences in it before you get to the end.

i say, and not meaning to offend anyone, but study on! if anyone is bothered by your progress of doing it the way you need to, they can just move on and read the other posts, for there are many.

[nephron]

Nephron, thank you so much for joining us!  I do have a question...  The people that do not progress from CKD 3 to 4 before dying of something else...what kills them?  I suppose that if the fact that so few progress to stage 4 is viewed as a "success", then should we assume that these people are not dying of complications of renal insuffiency? 

One of the landmark discoveries of the first decade of the 21st century is that chronic kidney disease is a potent risk factor for cardiovascular disease.

These patients have accelerated atherosclerosis, difficult to treat hypertension, abnormalities of calcium phosphorous metabolism.

Whether this represents a complication of renal insufficiency is a matter of perspective. These are not strictly due to decreased renal function and people with intact kidneys get all of these problems. However, in my eyes since nearly all of my patients suffer from these it is counter productive to say these are not related to renal failure and I consider them a complication of renal insufficiency.

[MooseMom]

I'd rather know "too much" than not enough.  Knowing "too much" may make me occasionally crazy, but that's my fault and I have to work on constructing a filter.  But the stakes are so high, and as such, you never know which some morsel of seemingly irrelevant information may save your life (and that's exactly what happened before my gall bladder surgery).  It's not a matter of needing control, rather, one of safety and self-preservation.

Thank you, noobie for being so generous in describing your circumstances and your feelings about it all.  It's very honest and thoughtful and, speaking selfishly, it has given me a lesson in resilience.

Silverhead, Sharon's experiences make you think twice about trusting anyone in the medical profession...what awful stories.

[natnnnat]

On a semi related point, she just underwent Moe's surgery for basil cell carcinoma on her left arm and several places on her face, the cancer on her arm was looked at by several different general practitioners and not one of them thought it was anything to be concerned about, I finally demanded we be referred to a Dermatologist and he immediately diagnosed it as cancer,and a biopsy proved it, but thankfully it is the mildest form, so it was easy to treat, but another valuable lesson learned, if you are not comfortable with the answers you are receiving, move up the chain as best you can.......

Thank goodness you got that sorted out quickly enough before it went squamous.  Keep an eye on the spot and on anything else suspicious.  Skin cancer is really bad left undiagnosed.

[MooseMom]

One of the landmark discoveries of the first decade of the 21st century is that chronic kidney disease is a potent risk factor for cardiovascular disease.
These patients have accelerated atherosclerosis, difficult to treat hypertension, abnormalities of calcium phosphorous metabolism.

Are these conditions usually responsive to treatment?  (absent the "difficult to treat hypertension")
 

Whether this represents a complication of renal insufficiency is a matter of perspective. These are not strictly due to decreased renal function and people with intact kidneys get all of these problems. However, in my eyes since nearly all of my patients suffer from these it is counter productive to say these are not related to renal failure and I consider them a complication of renal insufficiency.

Yep, I agree...I thought this might be your answer!  Another point you made in another entry queried the classification of the stages of CKD in that one person's stage 3 CKD may be the result of more aggressive disease than in another person with stage 3.  I think this is very true as my creatinine and eGFR are lower than those of some other people who are simply sicker than I am.  I always thought that was odd until I read your blog.

[silverhead]

MooseMom, didn't mean them to be awful stories, but trying to give the lesson that one really has to take control of their health and it's treatment, after lots of frustrations we have both learned to demand the best of the medical care available to us, and that includes paying attention to your provider, if you do not feel that real "connection" or are uncomfortable with that person for whatever reason, speak up NOW or move to someone you a comfortable with. If we had believed the doom and gloom that some of her providers and surgeons had predicted for her prognosis, she would have given up and died long ago, as it is, she is doing fine for the shape she is in, and her monthly visits to her nephrologist  leave him smiling and amazed at her bounce back from so many of her different problems (this is the same Neph who we had some initial head butting with in the beginning, but who now makes initial recommendations, but says I know you are going to do it your way anyway, and who also now makes trips to our house to check on her. We love this guy!)
Tom
 

[RightSide]

All this being said, however, it does bring me back to what I meant to be the original query, which is why do so many CKD patients die before they get D?  Is there not enough education on renal disease and what it means?

First of all, you can have up to CKD stage III without any symptoms--and so a person who doesn't get routine physicals from his primary care physician won't ever be tested for CKD.  Some time in late stage III (going on stage IV), he will start to get symptoms--but they may be so mild or generalized that they may be ignored or misdiagnosed as something else.

When I was a late stage III-early stage IV, I was fatigued and getting bone pains.  But I dismissed the former as likely due to emotional distress and poor diet; and I dismissed the latter as arthritis (which runs in my family).

And that's the problem.  Other diseases have specific symptoms.  If you start getting crushing chest pains, you think "heart attack."  If you suddenly start throwing up and having cramps and diarrhea, you think it may be a stomach virus or food poisoning. But kidney failure?  The main symptom of early stage kidney failure is "feeling sorta bleh," and that's not specific enough to get folks to a doctor.

The only way to detect CKD before it gets to stage V (when you'll need dialysis) is regular blood tests from your physician.  And many folks don't bother with that if they've been healthy otherwise.  That's how I got caught.

[cariad]

And I am not trying to insult this doctor from Detroit - I'm sure he's fine at his job, but nephrologists disagree all the time, and there's a reason: sometimes the answer is far from clear.

No insult taken.

I write my blog http://pbfluids.com for kidney professionals but I understand that all sorts of people end up reading it and that's fine with me but you got to understand I don't pull any punches, I don't soften the truth like I might in a face to face meeting (though I'm a pretty straight shooter face to face).

I am relieved that I didn't offend you, because upon rereading my message, I am sure I would have worded that less abrasively if I had known you were going to read it. Now that you are an IHD member, I know that you are no "garden-variety nephrologist" and I shall take what you say very seriously indeed. I like direct communication. The nephrologist from UW-Madison was pursuing his own agenda and aggressively trying to put me off getting a combination peripheral stem cell/kidney transplant because he wanted me to get my transplant in Madison, not Chicago.

I came down with ESRD as a child. My records are spotty, and some "mysteriously" disappeared, but I think it was initially assumed that my primary problem was heart disease because they put me on digitalis (!!!!) which I am sure did my kidneys no favors. My parents moved me to a more competent hospital and my attorney father, based on the information that the new hospital gave him, toyed with the idea of suing the first hospital. Learning about my own medical history did not exactly leave me with the greatest trust for doctors.

I am learning a lot from this discussion and will be sure to regularly check your blog.