Life Options

Discussions for Patients, Family, and Friends HD For Patients
1

Hi Folks

In googling things, I came across a site,Life Options< it was I guess the fore runner to this site? What happened to it? I sometimes think this site is fading. In looking at a site that has a top ten kind of thing for dialysis HDC has fallen. I hate dialysis has become # 1 at last look( The reason for this is the site forces people to join or don’t look at there posts)

The section I came across had to with ending dialysis. I thought that the NKF guide line as to when a person is legally able to go dialysis was if your your kidney function was at 10% for people with diabetes and 6% in people without diabetes. In reading the site posts it was said by Beth and Dori that people should go on dialysis at 15% kidney. looking at the NKF site they say there are 26 million people with CKD,most don’t know it. There seems to to be a misunderstanding , if only ,300,000.000 or so people are on dialysis. What are the rest of the people doing? And to get to the heart of the post, if a person has 8% to 15 % of kidney function is put dialysis then wants to stop to see if the person gets sick. What happens, if the person stays well (by well they don’t die),to the person and his/her dialysis provider any legal issues?. Do they stay in contact? And If the person in a week or two or three finds the need to go back on dialysis are there legal issues?

thanks
Bob O’Brien 09

2

Hi Bob,

The NKF says that there are 5 stages of CKD, based on the glomerular filtration rate (GFR). Stage 5 is kidney failure requiring dialysis or a transplant. Each year about 100,000+ people reach stage 5 CKD/kidney failure. The rest of the 26 million or so folks have an earlier stage of CKD (1-4) that doesn’t yet require dialysis or transplant.

There was a thread about recovery of kidney function, which can happen with acute (sudden onset–generally due to a toxin or blood loss) but NOT chronic kidney failure. If dialysis is no longer needed, it is stopped. If it is needed again, it starts again. I’m not aware of any legal issues related to this–although when a person had end-stage renal disease (ESRD) which is paid for by Medicare, it used to be that a doctor had to certify that the kidney failure was permanent. If I recall correctly, this is no longer required, but Beth would probably be able to cite chapter and verse of where this policy was and when it was changed.

The Medical Education Institute also runs the Life Options program as well as Kidney School. Any website that speaks to ALL people on dialysis (not just folks doing HOME treatment) will always have more traffic simply because of the numbers–300,000+ vs. about 25,000, but Home Dialysis Central is the renal community’s premier home dialysis (PD & HD) resource.

3

Hi Folks

[QUOTE=Dori Schatell;17032]Hi Bob,

The NKF says that there are 5 stages of CKD, based on the glomerular filtration rate (GFR). Stage 5 is kidney failure requiring dialysis or a transplant. Each year about 100,000+ people reach stage 5 CKD/kidney failure. The rest of the 26 million or so folks have an earlier stage of CKD (1-4) that doesn’t yet require dialysis or transplant.

There was a thread about recovery of kidney function, which can happen with acute (sudden onset–generally due to a toxin or blood loss) but NOT chronic kidney failure. If dialysis is no longer needed, it is stopped. If it is needed again, it starts again. I’m not aware of any legal issues related to this–although when a person had end-stage renal disease (ESRD) which is paid for by Medicare, it used to be that a doctor had to certify that the kidney failure was permanent. If I recall correctly, this is no longer required, but Beth would probably be able to cite chapter and verse of where this policy was and when it was changed. .

The Medical Education Institute also runs the Life Options program as well as Kidney School. Any website that speaks to ALL people on dialysis (not just folks doing HOME treatment) will always have more traffic simply because of the numbers–300,000+ vs. about 25,000, but Home Dialysis Central is the renal community’s premier home dialysis (PD & HD) resource.[/QUOTE]

I could not agree more in HDC is the best overall site for people looking for real Q & A on home dialysis. Do you still run the other sites?

So If I had stage 4 the Drs are no going to put me on meds that would help keep me healthy. I had two drs have different outlooks on this, one saying no meds before dialysis ,the other saying pre meds should have been started. Or if you have kidney disease ,stage 5 will follow 4 in short time. The thread I came across was on people stopping dialysis. My dialysis was due to trauma to my kidneys.At the time 4 renal drs had four outlooks. Since then I still go to bathroom 2 to 4 times a day. Also I had 2 outside drs question the wisdom of me on dialysis. I look to Beth posting on what happens if I want to stop ,not to die but to see how much function I have left( not much) but could I come off. Any legal issues with my center and me? My blood work had always been off for a # of yrs. That’s why the drs were back and forth on pre meds.

The story in Times (http://www.nytimes.com/2009/01/06/health/06seco.html?ref=health… short story) deals with cancer.I think it should apply to all life changing medical things. Be it cancer or heart ,etc. My new GP (1 1/2 yr) the first thing he wanted was a complete medical history on me. ( renal drs and team still have not done this)
When new GP looked at my history. lt let him know that I have a medical history going back to birth. And in it my Dr of 35 yes let him know that my level of understanding medical issues is far better than the avg. person. So my GP and I can talk on a higher level. My renal team still thinks I don’t understand issues. Since this (dialysis) the renal drs have pushed me to have my PTH glands taken out, even though we know with meds my PTh level are control. Take glands out isn’t the issue, it that one) meds can and do work. two) the drs they sent me too were just surgeons. I wanted someone who deals with the glands on a daily routine. ( after two yrs of looking found one so if they do have to come out I now have Dr I’m now understands and trust)

You know if this wasn’t me and was just reading this I would or might think the whole thing was out of a book.

thanks
bob Obrien

4

Hi Bob,

You ask some excellent questions. If the cause of your kidney failure was acute (trauma), then it IS possible that you could recover function, even up to a year or so after losing it. (How long has it been?) According to the abstract cited in this thread http://forums.homedialysis.org/showthread.php?t=1936&highlight=kraus, which I know you’ve seen because you posted to it, kidney function recovery seems to be more likely with more frequent dialysis.

How would your doctors know if your kidneys had recovered? I actually don’t know–but right now I’m at a kidney meeting in Kansas City where there may be some nephrologists I can ask. Or, I’ll email some of my gurus and ask them. Either way, I promise I’ll get back to you.

Thanks for sharing that NYT article. I couldn’t agree more that patients deserve to know ALL of their treatment options, including the ones about better treatment being available somewhere else. One of the HUGE policy “wins” in the renal community in 2008 was adding a requirement to the Medicare Conditions for Coverage of Dialysis Facilities that patients A. Be told what all of the treatment options are for kidney failure, and B. Where to get them. I’ve been at meetings where people said, “it’s not fair to patients to tell them that they can get another treatment somewhere else if they can’t go there,” my reply was that we know of patients who have moved across the country to get better treatment. We know of folks who have advocated to get programs started at their centers. We have no right to deny people this information!

5

Sorry I hadn’t posted a response to the couple of questions in this thread.

At one time, there was a requirement that creatinine be 8 (or creatinine clearance be 10) for non-diabetics and for creatinine to be 6 (or creatinine clearance 15) for diabetics to be considered to have permanent kidney failure needing dialysis or transplant. If someone didn’t meet those criteria, they would need to go through Medicare Review Board approval and a doctor could provide additional medical justification of the need for dialysis. There is not this requirement today.

Today a dialysis facility needs to complete a CMS 2728 form that contains information about the patient, including recent labs, information on his/her health condition and history of other health problems, and more. The doctor reviews the form and signs a statement that certifies that the patient has permanent kidney failure requiring dialysis or a transplant to survive. If completed correctly this documents need for dialysis. If the physician is lying about the patient needing dialysis or a transplant to survive and he/she knowingly falsifies the certification statement, he/she could be prosecuted and potentially pay a fine and serve time in jail.

If a patient is determined to ESRD and recovers kidney function before he/she is eligible for Medicare based on the type of treatment and how long he/she has been on dialysis, the patient will not get Medicare, even if the CMS 2728 form and a Medicare application was filed. The patient is responsible for notifying Social Security of any changes in his/her status so even if the dialysis clinic forgets to tell SSA the patient recovered kidney function, the patient should. If the patient is on dialysis long enough to qualify for Medicare and later recovers kidney function, Medicare coverage continues for 12 months after dialysis ends. This keeps the person from having to file a new Medicare application in case their kidney function decreases again requiring resumption of dialysis.

So far as to differences of opinion in how to treat people with CKD…The first NKF clinical practice guidelines were called Dialysis Outcomes Quality Initiative (DOQI). They were published in 1997. These guidelines were updated and others added as part of the Kidney Disease Outcomes Quality Initiative (KDOQI). Hopefully more and more doctors are reading these guidelines to know how to treat patients with CKD and they’re helping more patients prolong their kidney function and prevent kidney failure. There are KDOQI guidelines on many topics. Here’s one specifically for people with CKD prior to kidney failure:
http://www.kidney.org/Professionals/Kdoqi/guidelines_ckd/toc.htm

Here’s a guideline on cardiovascular disease:
http://www.kidney.org/PROFESSIONALS/kdoqi/guidelines_cvd/index.htm

At the top of this page, there are links to other guidelines.

If I failed to answer a question, please remind me.