Dialysis and When to Begin


Update 9/16/14:  When you are done reading this, please check out the comments at the bottom of this post.  They are excellent. 

I found this fascinating question and answer in “Ask the Doctor

My dad has stage 5 kidney disease. GFR was 13 a month ago, and 10 about 2 weeks ago. His doctor is looking at the creatinine level and saying that he has about a year to go before starting dialysis, however we should look into the transplant option. His creatinine level is around 5.2. Looking at the GFR, I feel like there is not much time, however the doc seems to think he’s OK for another year. What tests do you use to determine the amount of time left on your own kidneys without dialysis or transplant?

Dialysis is not based on any specific number.  Dialysis is based on having specific symptoms that can be treated by starting dialysis treatments.  This is commonly based on discussion between your father and the nephrologist.  There is discussion about the risks of treatment and the burdens of starting dialysis care versus the benefits of relieving symptoms associated with chronic kidney disease (CKD).  Only the nephrologist can make recommendations and your father must decide about whether he is willing to endure the burdens of care.

The answer is short and to-the-point but it leaves much to the imagination about when to begin dialysis.  At first, I wanted to just re-blog the post but I’m concerned that the answer is too brief and not very informative.   It is a “safe” answer in that it basically says, “well, it’s relative.  Only the nephrologist knows when to begin dialysis. The doctor will tell you when to begin and then you can decide to do it or not.”

Granted this guy is probably older (since he’s someone’s father and they are asking for him) but I take issue with the “whether he is willing to endure the burdens of care”.  What “burdens”?  Dialysis for older folks is probably more difficult than younger people but you can’t just assume he’s old and frail.  Some older people are pretty sturdy!  Anyway, I digress.  I need to return to the question of “when to begin”.

In my case, I pushed dialysis off for at least a year but not through any particular method like diet or such.  I just kept pushing the limits until the doctor finally declared, “It’s time.”  He said my creatinine wasn’t bad but my BUN (Blood-urea-nitrogen) was getting to a level of being dangerous.  So, I began.  If you’ve been reading my blog, you probably know my experience with “Dialysis and the First Stick”  or “Dialysis and the First Stick – more.

So, the answer to the question of when to begin is relative is correct.  It really depends on the factors involved.  Some people are informed early enough while they are in CKD (Chronic Kidney Disease) and before ESRD (End Stage Renal Disease) to know what to expect.  Then, there are those who find out in the emergency room that they must start dialysis now.  Some doctors will tell their that dialysis is an eventuality if that’s the case but not all doctors will be that informative.  I’m not sure why but that’s the way it is.

If you are CKD and haven’t started dialysis, you will probably be told your “numbers” based on the labs.  When I was in CKD, the number to watch was creatinine.  THe, like I write above, it was the BUN.  The doctor was watching a combination of the numbers but I was only told about those two.  Recently, the GFR (Glomerular filtration rate) is the popular measure,  However, when you read about it, you’ll note it involves the Serum creatinine level and that is central to the GFR calculation.  Most people I speak with who are CKD and and pre-dialysis are watching their GFR.  Unusually when it gets to about 20 percent (in other words, their kidneys are functioning at about 20 percent of “normal”), their doctors are telling them to get ready for dialysis.

In the case above, I’m a bit suspicious of those numbers and the doctors estimate of “a year to go”.  A GFR of 13 is very low because it’s under 20.  I personally think dialysis will be called for in less than a year.  It’s more like immediately.  But, the doctor is the expert, not me.  However, the doctor could be wrong and this man could end up in the ER and begin dialysis much sooner than a year.  Knowing he has a year, they should begin preparation for dialysis including getting an access.

That’s about it.  When to begin dialysis is “relative”.  It depends on when you transition from CKD to ESRD.  If you have some notice that it’s pending you have a chance to get prepared for it by having an access made or (“Dialysis and the Access“) so you don’t have to put up with a chest catheter.  Talk to your nephrologist and make sure you understand what he/she is watching for and how score in those measurements.

Posted in Access, AKF, Catheter, CKD, dialysis, ESRD, kidney, National Kidney Foundation. NKF, New Patient | Tagged , , , , , , , | 4 Comments

Dialysis Centers and @CMS 5-star Rating


medicareIn a previous related post,  I promised I would post more about the Davita position on this when I got it.  So, here it is and it makes some good points.  “What’s Wrong With the 5-Star Rating System for the Renal Community” by Mahesh Krishnan, MD, MPH, MBA, FASN  from NephrologyNews.com

Davita mostly takes issue with the “bell-curve” as a part of the rating system.  If you’ve had experience with the bell-curve, you know it forces some of the items at each end of the curve and places most of the items in the middle.  So if the best score on a test was 60 out of 100, that score would be on the far left of the curve and, if the worst score was 10 out of 100, it would be to the far right.  The balance of the scores, 59 to 11 would be placed in the middle of the curve.  A 60 in this case would be 5-stars and the 10 would be a 1-star, the others would be 2, 3, and 4-stars.

The problem lies in the CMS application of “grading on a curve” as a teacher might do with an exam.  It allows the exam scores to fall within a bell-curve but it actually rewards mediocrity.  If a facility does really well and scores 100 out of 100 but another scores 50 out of 100,  those with scores between the two will be awarded 2, 3, and 4 stars where they might actually be awarded 1 and 5 stars if there was a rigid grading system like 90-100 is 5 stars, 70-89 is 4 stars, 50-69 is 3 stars, 30-59 is 2 stars, and anything below that is 1-star.

DPC (Dialysis Patient Citizens) has responded to the CMS proposal and puts it rather well, better than I can.  So, please read their posting about it.  Comment below if you have something to add to this.

DevonTexas © 2014

Posted in dialysis, politics, ESRD, Medicare, lobbying, kidney, Dialysis Center, Dialysis Patient Citizens, DPC, CMS | Tagged , , , , , , , , , | 1 Comment

Dialysis and Mental Health


DPC logoI am really sorry for the late notice about this webinar and telephone conference but if you can make it tomorrow, this should be worth it.  Dialysis Patient Citizens (DPC), of which I am a member, has an Education Center which  is hosting a webinar in collaboration with the American Psychological Association (APA) on the the importance of good mental health on our overall health.

I have written several times about “Dialysis and Depression” which lead me to create this blog.  It seems to be common that we dialysis patients go through the typical stages of Grief before we come to a level of acceptance with our chronic disease. We are somewhat unique in that regard because if it was cancer, we would either get it into submission or die from it. However, fate has been kind to us and we have dialysis which allows us to continue living somewhat indefinitely.  But, in the course of that life, we must deal with the fact that we are but a couple steps away from death (another subject I’ve written about several times).

So, as DPC describes it, this webinar is about “Living Well on Dialysis”.  That certainly a topic we can all relate to.  If you can make it Sunday, September 7, 2014 at 4pm ET, 3pm CT, 2pm MT and 1pm PT, here is a link to the call information…

For more information CLICK HERE   See you there!

Posted in activism, CKD, depression, Dialysis Patient Citizens, ESRD, lobbying, New Patient, patient care, Social Work | Tagged , , , , , , , , , , , | 1 Comment

Dialysis and Acceptance


I Originally published this in October, 2012 but it’s an important issue and I wanted to bring it up again…

I recently read some  posts on the Davita Forums about people’s experience getting started on dialysis and how they seriously considered going on or not.  The process of accepting and embracing dialysis is much like the process of grief.  It have five stages and most of us go through each of them but some more quickly than the other.  However, if you’re making a decision not to begin dialysis, you’re obviously at some point prior to acceptance, The five steps of Grief are:

1. Denial and Isolation

2. Anger

3. Bargaining

4. Depression

5. Acceptance

Some postings were by people in denial, others who were coming to accept it, and others at points along the way .  I don’t think you have to like dialysis but you need to come to a point where you accept it.

Here’s a very heartfelt post by someone who dealt with acceptance and wrote about her journey along the way:

i lasted a whole year before i started getting bad symptoms of the end stage of kd. i was pretty much going to wait it out till i died. i wanted to be happy not dealing with dialysis. i went to a doc apptmt and he told me that i needed dialysis rt away. it took me a couple of hours to get out of my bed and decide i wanted to get it again. so after long hours sitting with my fam…listening to them trying to convince me to go….i went only because i was thinkikng about builidng a life soon with my boyfriend of 3 yrs.

so i went to the hospital to get a access( catheter in my shoulder). the docs kept changing thier mind about when they where going to put it in and where…so i changed my mind. it was a confirmation that night when i woke up feeling pain weakness in my legs…like how i felt on dialysis. that remimned me of how terrible i felt. so i definitely where going to tell my doc n the morning i wasnt doing it. that morning, every doc, nurse came in my room trying to get me to change my mind back. this went on for hours…

then there was this one doc who came in and unintentionally scared the crap out of me. lol  she was asking questions about symptoms i didnt even tell her i had. she told me things that no one knew. it made me feel like we were close…she knew how i felt, she also seemed like she cared about me. for real. she told me” do u understand the cautions of this decision? you will die eventually… sooner than you should if you dont do this. i dont think you really do, i think that you are going to go home and think this is going to go away. i think that u are just going to wait, wait until you get worse, till you deteriorate and die”

she was rt. no one knew thats exactly what i was going to do. which sounds like a scary journey. i felt sad about it but i was too scared to go along with the process and deal with this for the rest of my life. i was willing to go home, back to where my life was and just live every day to keep me feeling normal. i was in denial and didnt want to believe that i was.

Now, here i am in dialysis, getting my fix. lol its going ok. decided to go to a different clinic this time. i believe they where under dialysing me or doing something wrong at the other i was at a year ago. because when ever i got off, i felt sick…people told me im not suppose to feel sick; im suppose to feel fine. i hate sitting here for 3 hrs on my ***. BORING [original posting]

I particularly like the poignant moment when the doctor made a connection with the patient and helped her through this process.  As the writer said,

“she was asking questions about symptoms i didnt even tell her i had. she told me things that no one knew. it made me feel like we were close…she knew how i felt, she also seemed like she cared about me. for real.”

The doctor made a connection and touched her heart.  That simple act got the patient through the process and open to acceptance.  I particularly like the statement, “she cared about me“.  I’ve written about “Patient-Centered Care” and I believe here is a moment when it took place in practice.

Reading carefully you can see all the elements of the five steps toward acceptance in this one post.  You can especially see bargaining as the patient wrestled with herself and others before she started dialysis.  There’s not a lot of anger but it’s there.  Many people shove anger to the side because it’s not polite to be angry and we’re taught as children not to show anger but it’s there.  The “denial and isolation” is definitely present as well.

But it’s important to note that we may regress sometimes during our life on dialysis.  I find myself going back through the five steps in small ways on particularly “bad dialysis days”.  You know, those days when the tech isn’t sticking you well, or it’s too cold or too hot in the center, or something in your personal life upsets you, and you have to run through the five steps to return to acceptance.  So, it’s not over just because you entered dialysis.  In some ways, we go through the process to acceptance every time we walk through the Dialysis Center doors.

Update: I almost forgot about this link to a site that writes about Embracing life on Dialysis.

© 2012 DevonTexas

Posted in depression, dialysis, patient care, Patient-Centered Care, personal, thankful | Tagged , , , , , | 2 Comments

Dialysis and Rationing


Medicines costs moneyI originally published this post in January, 2013 but I had occasion to review it recently and decided to re-publish it.  

There’s a great article in the Seattle Times that covers the history of dialysis.  The title is: “The dialysis dilemma: urgent need vs. overtaxed system” and the subtitle is: “As needs and costs soar, so do questions about what is right.

It describes the history of dialysis really well and the motivation that caused Dr. Belding Scribner to begin design of the shunt that would advance treatment for patients with ESRD.  Dialysis, at the time (1960’s), damaged the veins and arteries and limited the effective use of the treatment.  It was also extremely expensive and there were few machines. Therefore, dialysis had to be rationed.  This created an ethical dilemma and the decision of who received dialysis was determined by a so-called “God Committee” who rationed the treatment.   After the fact, it was determined that the decisions of that committee were biased and naive.   It’s a fascinating read.

But some statements in the article and consideration of rationing of dialysis treatment disturb me.  One statement is:

“Today, roughly 600,000 U.S. patients have end-stage kidney disease. The number reflects an epidemic of diabetes, uncontrolled high blood pressure and bad diets.”

This makes it seem that most dialysis patients are to blame for their kidney failure due to “bad diets”.  It’s true on the surface, but so many patients don’t understand the relationship between kidney failure and diabetes and hypertension.  Far too many doctors treat both diabetes and hypertension but never instruct their patients in the long-term effects or that on the kidneys.  Most patients don’t find out until their kidneys fail after a couple decades of abuse.  I’m sure the author wasn’t intending to make it seem like patients are responsible for their kidney failure but it comes across like that and I want to clarify the point.  Dialysis patients are not responsible for their condition any more than heart or lung disease patients.  The solution to “bad diets” is not rationing of dialysis; it’s better education and intervention.

That’s not the only time the author slips into possible misconceptions.  Later in the article, the author quotes Dr. Michael R. Kelly (a leader in the Northwest Renal Society and the Northwest Kidney Foundation) as saying:

“Entitlement means ‘I deserve it, and you’re paying for it,’ ” he says. ‘You can keep treatment going and there will be no phone calls. But if you stop, there’s a lot of phone calls.'”

and follows a bit later with:

Today, with the door to dialysis swung wide open, Kelly argues, doctors, families and patients need a committee because someone, somehow, has to say no.

This comment piqued my interest.  It seems to imply that not all people deserve dialysis and there should be limits on it because it’s “an entitlement”.   My research into Dr. Kelly tells me his position would not be consistent with the comment per se.  I expect the statements were somewhat out of context.  However, the idea that dialysis should be rationed is a reality in these times of fiscal restraint and possible Medicare cuts so I am wary of any moves in that direction.

If Dr. Kelly means to say there are patients who are on dialysis but shouldn’t be, there’s some truth to that.  There are circumstances when patients are being treated who perhaps shouldn’t be.  I’ve seen patients brought into the center on a gurney by an ambulance crew.  They are usually very old, barely alive, and extremely fragile with bruised arms and legs from repeated unsuccessful sticks. It’s a painful scene to view.  There’s a point at which dialysis is only sustaining life for no apparent reason and it’s a quality of life question.  In that case, patients and family should be allowed the opportunity to consider rejecting it.  The examples Dr. Kelly offers in the Seattle Times article make it appear that’s what he meant and, if that’s the case, we’re in agreement.  To quote the article, “He thinks about how exhausting dialysis is on elderly patients and says he believes doctors must weigh in when dialysis is futile.”

But, as to dialysis as an “entitlement”, I have a problem with going there and using that term.  Dialysis is expensive; no argument there.  Medicare pays a huge amount for it annually and it accounts for a good percentage of their annual budget.  But, so what?  Medicare is not an “entitlement”.  It’s an earned benefit.  We all pay into it and it’s there to cover events like kidney failure and especially medical care for the aged.  Private-pay medical insurance can’t, and won’t, carry the burden of dialysis or elderly medical care.  That dialysis patients as a group represent a larger percentage of the the Medicare budget than other groups shouldn’t make us targets.  It’s a simple fact.  Dialysis treatments are expensive but they give patients with failed kidneys a life-giving alternative.

Dialysis is at the forefront of cost containment and management.  We are the first group leading the way in cost management through the CMS (Center for Medicare and Medicaid Services).  Dialysis providers are the guinea pigs for “bundling” payments from Medicare and the Quality Incentive Program (QIP) that links reimbursement to patient treatment performance.   There are several programs currently in development and implementation that are effective in dialysis cost containment.  Many of the Accountable Care Organizations (ACOs) in Medicare are dialysis providers.  In fact, the justification for the “Immunosupressive Drug Act of 2011″ which extends prescription coverage for kidney transplant patients was that it would save money in the long run.   Dialysis organizations are always looking for ways to cut costs and provide treatment in a cost-effective manner.

So, when I come across a article such as this one that mentions rationing of dialysis, I get suspicious because there’s really no rationale to limiting dialysis.  The fact that more people are experiencing kidney failure each year is simply a fact.  It’s no reason to think about rationing.  If there’s anything that needs to be rationed, it’s the greed of the dialysis providers who consider profits before patients.   The “for profit” model of most dialysis providers naturally interferes with giving the best dialysis services.  In the interest of profit, the dialysis center is always seeking the least-cost alternative because it expands the corporate bottom-line.  The non-profit model is a better method to serve dialysis patient needs.  Eliminating profits would save 10-20 percent of the cost of dialysis.  That, then, is my suggestion as an alternative to rationing; Eliminate the profit motive.  All centers should be operated by non-profit providers.  After that, we can discuss “rationing” but not before.

DevonTexas © 2013

Posted in dialysis, Medicare, Obamacare, patient care, Patient-Centered Care, Transplant | Tagged , , , , , , , , | 3 Comments

Dialysis and a New APP


aakp_logo_small

The AAKP came up with this helpful bit of Andriod technology…

THE AMERICAN ASSOCIATION OF KIDNEY  PATIENTS LAUNCHES NEW APP TO HELP PATIENTS WITH NUTRITIONAL NEEDS

“On July 24, the American Association of Kidney Patients (AAKP) launched the AAKP Nutrition Guide App for all Android-based devices. The FREE App is an electronic version of the AAKP Nutrition Counter, which provides the nutrient values of more than 300 commonly consumed foods, as well as many fast food restaurant options. Nutritional values available include carbohydrates, fat, saturated fat, protein, calories, sodium, potassium, and phosphorus. These nutritional values are closely monitored in individuals with chronic kidney disease. The AAKP Nutrition App provides a convenient tool that allows patients to instantly find how foods can be incorporated into a diet and appropriate serving sizes.

The new mobile application is the latest addition to a portfolio of free, robust web tools AAKP has available for kidney patients including: the HealthLine series featuring live and recorded webinars; AAKP MyHealth – an online personal health record featuring the latest Nutrition Tracker component; and an online listing of kidney disease support groups. Android smartphone users can download the AAKP Nutrition Guide App by visiting the Apps Store on their phones or by visiting the direct link at:

https://play.google.com/store/apps/details?id=com.bbtech.aakpnutritionguide&hl=en&rdid=com.bbtech.aakpnutritionguide

Thanks to AAKP for providing this useful app for kidney patients!  I’m sorry it took me so long to find it and post about it!  If you have an Android device, this might help you manage your foods.

 

Posted in AAKP, apps, CKD, computing, dialysis, diet, dietary restictions, ESRD, kidney, pad, phosphorus, potassium, recipes, tablet, Uncategorized | Tagged , , , , , , , , , | 1 Comment

Dialysis and Cramping


crampsCramping isn’t good!  CRAMPING IS BAD!

Aside from the fact that it is excruciatingly painful, it is an indication that something is wrong during dialysis.  Too much fluid is being removed or fluid is being removed too quickly.  I’ve had my leg cramp so hard I thought it was going to break a bone and brought me to tears.

You get cramps when the muscles don’t have enough fluid for their proper operation.  Some people get cramps in major muscles like their legs or in muscles furthest away from their heart, like feet.  I even had cramps in my hands that caused me too look like I’m awkwardly signing “Live long and Prosper” to Captain Kirk.  All kidding aside, it is very painful and feels like torture.  I’ve seen many patients brought to screaming from the pain.  And, it is an indication something is amiss in dialysis.

If you are cramping often, talk with the technician about the rate of flow and the amount of fluid being removed.  If they don’t seem to have an understanding of the problem and offer some relief, talk with the nurse.  Then, if you aren’t getting a reasonable response, speak with the doctor.  Perhaps your “dry weight”  (your weight after dialysis) needs to be increased because you’re taking off too much fluid or you’re taking it off too quickly.  Perhaps you need to explore adding an additional session that week so you don’t have to remove too much fluid in just three sessions and a fourth will help.  My center will sometimes have a chair available on Saturday and I come in for a fourth session.  I have had to do it during the holidays when eating and drinking too much is often my failing.  Ask and discuss it with the nurse.  Some centers don’t have that opportunity though because they are at capacity.  But at least explore the option.  However, with some work on your part it shouldn’t be necessary.

Make sure you are part of the fluid removal calculation.  When you come into dialysis, you weigh in.  The amount of fluid to be removed is your weight before dialysis minus your dry weight.  Too often the tech just does a quick calculation and doesn’t review it with you but enters that information into the machine and off you go. Some patients don’t know how much is being taken off.  Don’t let that happen. Engage.  Ask the tech how much is being taken off.   Check their math, so to speak.  Be observant and discover your limit.  My tech, Bobbie, pointed out that I can only tolerate a maximum fluid removal of 5.5 liters. If I exceed 5.5, I’ll start cramping.  For example, if I am six liters over my dry weight,  he told me to just do 5.5 or less and be careful with my fluid before the next treatment and take off the rest in the next treatment. Don’t exceed 5.5 liters in the four hour treatment.  Great advice.  (See my blog about Fluid Control . You have to limit your fluid intake between sessions for your own good!

If the cramping comes before the last hour and your dry weight is correct, it may be the rate of flow. Too much fluid is being removed from the blood too quickly.  Again, speak with the tech, nurse, or doctor about reducing the flow rate or, another option, extending the treatment time. As much as I dislike sitting in that chair for any longer than necessary, adding another fifteen to thirty minutes could mean less fluid has to be removed as quickly and you benefit by avoiding cramping.

If cramping occurs, one method of immediate relief is to add saline to your blood increasing the volume of fluid in your blood.  This really isn’t doing you much good.  You should be removing fluid, not adding it. Also, saline adds salt (sodium) and makes you thirsty for more fluid!  It’s counter-productive.  Another method is to have the tech stop the fluid removal for a few minutes (perhaps 10 of 15 minutes).   Your blood continues to be cleaned but no fluid is being removed.  This is a better option.   Engage the tech when you start feeling cramps coming on.  Learn to sense when they are beginning and take immediate action to avoid them.

Again, cramping is not good.  It’s an indication something is wrong.  Some centers and technicians don’t understand this.  They act as if it’s just part of the treatment “experience”.  No it isn’t!  It should never (or rarely) be happening.  I went through a couple years of frequent cramping at such a center.   Where I am now, they don’t allow cramping and do whatever they can to make it nonexistent.  The dialysis goes better and I don’t have to endure any pain.  I do my best to manage my fluid and they do their best to help me avoid cramping.

(In another posting, I will discuss Blood Pressure and Dialysis.  As fluid is removed or is removed too quickly, your blood pressure will drop.  This is more likely than cramping for me!  But that’s for another blog.)

If you have some experience and can offer some advice, please feel free to comment.

Posted in cramping, cramps, dialysis, dry weight, ESRD, fluid control | Tagged , , , , | 5 Comments