Updated

 

 

 

You may have seen the pictures of the updates we’ve been making to our home on Facebook or Instagram. Now, it seemed to me that if I could update my home, I could update SlowItDownCKD’s social media. So I did. The website at www.gail-raegarwood.com is totally SlowItDownCKD now, as are the Instagram, LinkedIn, Twitter, and Pinterest accounts. Of course, the blog was next. I liked my updates, but realized some of the new organizations on the blogroll (the list to the right of the blog) may be unknown to you.

No problem. I’ll just introduce them to you. Allow me to make the introductions…

We’ll go alphabetically down the roll here. The American Association of Kidney Patients, The American Kidney Fund, and The American Society of Nephrology are not new. Just in case you need a reminder of what each is, I’ve linked their titles to the organization. Just click on one of them to go to their websites, as you usually do for any title on the blogroll.

This brings us to The International Federation of Kidney Foundations. This is directly from the young (established 1999) organization’s website:
The International Federation of Kidney Foundations leads the way in the prevention and treatment of kidney disease, through its Membership on all continents around the world. The Federation was formed to foster international collaboration and the exchange of ideas that will improve the health, well-being and quality of life of individuals with kidney disease. We hope to achieve this by advocating for improved health care delivery as well as adopting and disseminating standards of best practice of treatment and care. We facilitate education programs for member organisations, promote research, communicate with other organisations and exchange ideas, particularly those concerning fund raising….
The IFKF helps facilitate the establishment of more kidney foundations and to help existing foundations become more dynamic and effective. Worldwide, most individuals with chronic kidney disease or hypertension are not diagnosed until long after the illness has developed. Moreover, when they are diagnosed they are too often treated sub-optimally or not at all. In many parts of the world, once end stage kidney failure occurs, patients do not have access to dialysis or kidney transplantation.
IFKF members join together with ISN members and kidney patient associations, to celebrate World Kidney Day annually in March, to influence general physicians, primary healthcare providers, health officials and policymakers and to educate high risk patients and individuals.

I’ve been interested in the global effects of Chronic Kidney Disease since I started preparing for Landmark’s 2017 Conference for Global Transformation at which I presented this past May. Writing two articles for their journal opened my eyes- yet again – to the fact that this is not just a local problem, but a worldwide problem. That’s why I included Kidney Diseases Death Rate By Country, On a World Map in the blogroll. I mapped out the statistics I found here on a trifold map to exhibit at the conference. Seeing the numbers spread all over the world was startling, to say the least.

Here is their 2015 global CKD information:
In 2015, the Asian nations of India and China fared the worst when it came to the number of deaths due to this degenerative health condition per thousand people. According to the World Health Organization (WHO) data (I’m interrupting. Would you like a link to WHO on the blogroll?), India had the highest number of kidney diseases deaths. The data put the figure at an astounding 257.9 per 1,000 people. China had the second highest number of deaths due to kidney diseases. Here, the number stood at 187.4 per 1,000 people. Though not as bad as the two Asian nations, the United States was also grappling with the problem of kidney diseases deaths in 2015. The nation had 59.8 deaths (per 1,000 people) due to kidney diseases, while Indonesia, which occupied the fourth place, had an estimated 43 deaths (per 1,000 people) due to kidney diseases. Nations such as Egypt, Germany, Mexico, Philippines, Brazil, Thailand and Japan reported deaths between 20 and 40 (per 1,000 people) due to kidney-related diseases. But, on the positive side, there were many nations in the world where a negligible number of people died due to kidney diseases. It is a noteworthy fact that countries such as Maldives, Vanuatu, Iceland, Grenada, Comoros, Belize, and many others, reported a zero figure in 2015.

But then I wanted to cover more localized information about CKD, so I included The National Chronic Kidney Disease, Fact Sheet, 2017. This is basically facts with pictograms that make the information about the United States’ CKD information more visual and easier to grasp. The information is more distressing each year the site is updated.

Fast Stats

• 30 million people or 15% of US adults are estimated to have CKD.*

• 48% of those with severely reduced kidney function but not on dialysis are not aware of having CKD.

• Most (96%) people with kidney damage or mildly reduced kidney function are not aware of having CKD.

After several sites that are not new, the last new site, other than direct links to SlowItDownCKD’s kidney books, is The Kidney & Urology Foundation of America. Why did I include that? Take a look at their website. You’ll find this there:
The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.
What Sets Us Apart?
The Kidney & Urology Foundation of America is comprised of a dedicated Executive Board, medical advisors, educated staff and volunteers who provide individualized support to patients and their families. Adult nephrologists and transplant physicians comprise our Medical Advisory Board, Board – certified urologists serve on the Urology Board, and pediatric nephrologists and urologists represent the Council on Pediatric Nephrology and Urology.
We are a phone call or e-mail click away from getting you the help you need to cope with a new diagnosis, a resource for valuable information on kidney or urologic diseases, a window into current research treatment options or a link to a physician should you need one.

Are there any organizations I’ve left out that you feel should be included? Just add a comment and I’ll be glad to take a look at them. I am convinced that the only way we’re going to get any kind of handle on Chronic Kidney Disease as patients is by keeping each other updated.

Until next week,
Keep living your life!

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

IMG_2982To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? IMG_2980Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

thoracic-aortaI purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”graduation

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

FullSizeRender (2)However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  IMG_2982alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the bottled waterfunction of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”laughing

Until next week,

Keep living your life!

DON’T K.E.E.P. It a Secret

National Kidney MonthHello, Week Two of National Kidney Month.  Surely, you’ve gotten yourself checked for Chronic Kidney Disease by now.  After all, more than 20% of us here in the U.S. have it. That’s 10 million people. Mind boggling, isn’t it. Here’s the kicker: that’s as of 2010 – five years ago now – according to The National Kidney and Urologic Disease and Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/#3

But, wait, it gets worse. If you, like me, are over 50, your risk has increased.  Over 70 {Awk!  That’s only two years away for me.}, it increases even more.  What hurts for me is that so many people don’t know they have Chronic Kidney Disease. I’ve read statistics placing this at anywhere from 20 to 90%.  Rather than go on again about if-I-had-been-diagnosed-at-stage-1-rather-than-stage-3-I-would-have-had-more-time-to-slow-down-the-progression-of-my-ckd, let’s just say it’s easy to have yourself tested.

I’ve written about just needing a simple blood test and a simple urine test.  You can even have this done via the usual blood tests you already take if you usually take blood tests.  I have my pcp’s and nephrologist’s blood draw orders combined if they fall within two weeks of each other – with my doctors’  blessings. It’s not cheating, folks; it’s one less needle in your arm as I see it.

Well, what about if you don’t have blood tests regularly?  You could ask your PCP to write you orders for this. Most won’t do so without a visit, though.  Let’s say you don’t have the money, or can’t get an appointment early enough.  What then?K.E.E.P.

That’s where K.E.E.P. comes in. The acronym stands for Kidney Early Evaluation Program and is offered by the National Kidney Fund.  According to their website, this is what is offered.

  • Risk Survey

  • Body Mass Index (BMI): Height and Weight Measurements

  • Blood pressure check

  • ACR urine test for albumin (a type of protein) – For individuals at risk only!

  • Free educational materials

  • Opportunity to speak with a health care professional

Notice, no blood test.  Think of K.E.E.P. as a place to begin your kidney education. That risk survey and the urine test for “at risk” individuals are important parts of the program.  Over 50 – go to a K.E.E.P. event. Over 70 – definitely go to one.  These are not the only “at risk” definers, though. Add in the following.

  • Anyone with high blood pressure, diabetes

  • Anyone with a family history of kidney failure

  • African-Americans, Hispanics, Asians, Pacific Islanders and American Indians

  • Individuals who are obese (body mass index of 30 or above)

Now you can see why your BMI is measured and your blood pressure read.   Thank you to the National Kidney Fund at https://www.kidney.org/keephealthy for the above information.  If you’re interested – and I’m sure hoping you are – you can find the locations and dates of these on the upper right hand corner of the same page.  You’ll have to enter your geographical information, but that’s it.

That’s another option, but budgets are being cut all over the place.  So let’s say there’s no K.E.E.P. event near you. What now? How about the Path to Wellness program? What’s that, you say. It’s a partnership between the renal and heart communities for the following purpose according to the website of the Cardio Renal Society of America at http://www.cardiorenalsociety.org/ {The website does seem to be aimed toward medical professionals.}

Public Health Education and Early Detection

Path to Wellness is an integrative community-based screening program addressing the interconnections between kidney disease, heart disease, and diabetes. It encourages utilization of community-based or primary care services and empowering a diverse demographic of at-risk patients to make significant, positive changes in their personal well-being and quality of life.

In Arizona, the Arizona Living Well Institute is also involved in this project.  Dr. J. Ivie, the Director of Patient Services at the National Kidney Foundation of Arizona provides a more patient oriented description of the event.

Path to Wellness has already touched close to 400 Arizonans at risk of diabetes, heart disease and kidney disease by providing education, screening, self-management skills and connection to a medical home.  We are scheduling the first screening event of 2015 on Saturday, March 28th at the Salvation Army KROC Corps Community Center near South Mountain in Phoenix.

By the way, they are calling for volunteers to help out at this program, so please contact Dr. James Ivie via any of these methods if this interests you. I was recently made aware that high school students need to perform community service as a graduation requirement and was wondering if this is applicable if the students are over a certain age.  Again, a question for Dr. Ivie.

Phone:         602.845.7905

Fax:              602.845.7955cardiovascular

Address:      360 E. Coronado Rd. #180

                      Phoenix, AZ 85004

Email:          www.azkidney.org

Digital Cover Part 1I like to perform community service, too.  In this case, that service is for my kidney community.  Hmmm,  World Kidney Day is March 12. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is now available in both print and digital versions on Amazon.com.  The logical connection between the two for me is that World Kidney Book will be the day this book is free.  Remember I offered The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 free on February 2nd because it was my birthday? {Doesn’t every author offer their books free on their birthday?} This works the same way.  You just order the book.Part 2

Here’s how my mind works: I have dissolved in laughter because I just realized I was wondering if What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is feeling left out because there’s never been a freebie day for that book.  I get it!  It’s a book {but it’s my baby.}Book Cover

Whoa!  I’ve been getting calls that the blog address no longer works.  After a little gentle questioning, it came out that the callers were using the old address: https://gailrae.wordpress.com.  If you use that address, you’ll receive the following message:

“gailrae.wordpress.com is no longer available.  The authors have deleted this site.”  No I didn’t! I just changed the name to gailraegarwood.wordpress.com.  I’ll consider this a reminder to myself to leave well enough alone.

I followed a forum user’s advice to simply change the name, not realizing all the old blogs will be deleted.  I thought the site was being deleted and you would be redirected to the new address for all the blogs.  Silly me.  I am extremely thankful The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 were published before this mini catastrophe,  but am still not happy with it.  Oh well. Might as well choose it since I have to do the work anyway.

Hang on while I recreate the blog.   Well, actually, if you’re reading this, it’s already recreated.  Yay!

Until next week,

Keep living your life!

Urine or You’re Out

How odd that urine is so important to us.  Make no mistake; if you have Chronic Kidney Disease, you’re always keeping an eye on it.  I’m pretty sure you all know about the color chart to see if you’re hydrating enough.  If you don’t hydrate enough, your kidneys can’t do their jobs as well… and they’re already struggling to do them. This is the least complicated urine hydration chart I’ve seen.urine hydration

Of course, I’ll go back to remind you of just what the jobs of your kidneys are.  My source?  My first book about our disease, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 7.

They filter as many as 200 quarts of blood per day to rid us of roughly two quarts of waste and extra water.

These two organs, the master chemists of our bodies, have several functions: regulating the fluid balance in the body, providing vital hormones, producing erythropoietin, and producing the renin that regulates blood pressure. This is why CKD patients need to be careful about sodium, Book Coverpotassium, chloride, calcium, magnesium, and phosphates. Your nutritionist may not even mention magnesium to you since this constitutes only 1% of extra cellular fluid. Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.

Wait a minute; I think we need to go even further back.  A picture of the urinary tract would probably be helpful here, too.urinary

Okay, now I can start writing about your urine. I’m pretty sure I mentioned in an earlier blog how disturbed I was to be one point over the normal range for microalbumin. Here’s a definition of just what that is.

Micro, or very small amounts, of albumin in the urine. Ur stands for urine. {As in the test for proteinuria.} Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so the albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.

Read that last sentence again. There seems to be a Catch 22 here. As a Chronic Kidney Disease patient for the last seven years, this has never shown up in a urine test for me before. I am including both the 24 hour variety and the random {Dipstick} variety in that never.

So now we know about microalbumin.  What about proteinuria?  Notice the ur in the word.  We just learned that means urine.  This is another indication of kidney disease.  I have never been out of acceptable range for this.  According to WebMd at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine

Healthy kidneys do not allow a significant amount of protein to pass through their filters. But filters damaged by kidney disease may let proteins such as albumin leak from the blood into the urine.

Glomerulus-Nephron 300 dpi jpgFilters?  This diagram of the glomerulus may help.

If albumin is a protein, are proteinuria and microalbumin the same? Well, no.  Health Communities at http://www.healthcommunities.com/proteinuria-and-microalbuminuria/overview-of-proteinuria.shtml tells us

Albumin is particularly useful in absorbing bodily fluid into the blood. Because the albumin molecule is relatively small, it is often among the first proteins to enter the urine after glomeruli are damaged. Therefore, even minor kidney dysfunction is detectable with proper diagnosis of microalbuminuria.

All right, got it?  Albumin is a protein.  It will show up as microalbumin in your urine test.  It may also show up as proteinuria since albumin is a protein. Once upon a time, you always needed to conduct a 24 hour urine test for this information, but…

In recent years, researchers have found that a single urine sample can provide the needed information. In the newer technique, the amount of albumin in the urine sample is compared with the amount of creatinine, a waste product of normal muscle breakdown. The measurement is called a urine albumin-to-creatinine ratio (UACR). A urine sample containing more than 30 milligrams of albumin for each gram of creatinine (30 mg/g) is a warning that there may be a problem. If the laboratory test exceeds 30 mg/g, another UACR test should be done 1 to 2 weeks later. If the second test also shows high levels of protein, the person has persistent proteinuria, a sign of declining kidney function, and should have additional tests to evaluate kidney function.

Thank you to the National Kidney and Urologic Diseases Information Clearinghouse {A service of the NIH} at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/#tests for that information.banner-nihlogo

And that is where creatinine comes in and why you need to be aware of your creatinine levels in your urinalysis. By the way, blood tests will also report the amount of albumin and creatinine in your blood. This could promote another discussion, one about Blood Urea Nitrogen tests, but it would be out of place here since that’s not part of the urine.

As you can see this is a complex topic.  You need to be aware of what the color of your urine can tell you about your hydration – whether or not you have Chronic Kidney Disease – and monitor both your microalbumin and proteinuria, as well as your creatinine.

41DsvandphL._BO2,204,203,200_PIsitb-stThe Book of BlogsAnother complex topic is editing the new print books.  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 aren’t quite ready.  I’m working with a new publisher and we’re just getting to know each other’s styles.  The good part about that is you get two books for the price of one on Amazon.com digital until the print books are ready.  Look for The Book of Blogs: Moderate Stage Chronic Kidney Disease.  Once the print copies are ready, I promise a day of the digital copy for free… if that perk is still available to me at that time.

I don’t know about you, but I get just as tired from overdoing it for good things as well as bad.  This weekend was a test of how well I could adhere to my renal diet with date day, a memorial dinner, and a celebratory champagne brunch.  Being human, I blew it on ice cream.  My pounding heart and lightheadedness have convinced me: no more sugar treats!  Although, some of my non-CKD friends report the same symptoms upon a sugar overdose…

Until next week,

Keep living your life!

It’s All Connected

About those random posts you may be receiving from me… I am transforming the blog into a book as promised.  However, I don’t really know what I’m doing and am learning on the job, so to speak.  I Kidney Book Coverwouldn’t be at all surprised if you heard me yelling, “OH, NO!” (and worse) at least once a day from now until the process is complete.  I guess you’re bearing witness to my learning process. Boy, am I ever grateful you’re a patient lot!

Now, what I really wanted to write about. I got a call from my primary care physician telling me that while I had improved my BUN, Creatinine, BUN/Creatinine Ratio, LDL, and eGFR levels on my last blood test, the Microalbumin, Urine, Random value was abnormal at 17.3. I checked online to make certain I had heard her correctly.

Dr. H. Zhao practices at Deer Valley Family Medicine here in Phoenix.  The practice started using a site to report your results as soon as they’re available, sometimes the next day.  I wonder why I got that call at all when this process is in place.

When I finally finished congratulating myself for all these improvements, I started to question why the Microalbumin value was out of range.  I knew it hadn’t been out of range last year, but I did have Chronic Kidney Disease.  That in itself would have meant it would be out of whack, wouldn’t it?

Here we go again.  I pulled out my trusty copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and turned to Chapter 5, “What Flows Through You,”  The Random Urine Tests,  number 9299 on page 52 (Honestly? I used the word search function for the digital book, even though I had the print copy in front of me.  It’s just plain easier!) and found:

“tests for micro, or very small amounts, of  albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so theBook Cover

  albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Of course I wanted more.  We all know micro from micro-mini skirts (Are you old enough to remember those?) and microscope.

Wait, if protein in the urine “may be an indication of kidney disease” – which I have – why was this a problem?  Or was it a problem?

Both high blood pressure (which I do have) and diabetes (which I don’t) could be the cause since both may lead to the proteinuria (protein in the urine, albumin is a protein as mentioned above) which may indicate CKD. Microalbuminia could be the first step to proteinuria.

But, as usual with medical conditions, it’s not that black and white.  I scurried over to our old friend WebMD at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine to look for other risk factors and found these:

  • Obesity
  • Age over  65
  • Family history of kidney disease
  • Preeclampsia (high blood pressure and proteinuria in pregnancy)
  • Race and ethnicity: African-Americans, Native Americans, Hispanics, and Pacific Islanders are more likely than whites to have high blood pressure and develop kidney disease and proteinuria.

While I’m well past child bearing, I’m also over 65 and, ummm, (how’s this for hedging?) clinically obese.  Does that mean proteinuria is to be my new norm?

NIHMaybe there’s something more I can do about this.  According to Skip NavigationU.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES‘ National Kidney and Urologic Diseases‘ Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/

“In addition to blood glucose and blood pressure control, the National Kidney Foundation recommends restricting dietary salt and protein. A doctor may refer a patient

to a dietitian to help develop and follow a healthy eating plan.”

 This is nuts!  I have CKD.  I already restrict myself to five ounces of protein a day. I’ve abolished table salt from the house and watch the salt content in the foods I eat. I’m handling my blood pressure with Losartan/HCTZ. (See the next paragraph.) I haven’t progressed from microalbuminuria to proteinuria, yet I’m still doing more damage to my body.

MedicineNet at http://www.medicinenet.com/losartan_and_hydrochlorothiazide/article.htm explains the Losartan/HCTZ very well:blood pressure 300dpi jpg

“Losartan (more specifically, the chemical formed when the liver converts the inactive losartan into an active chemical) blocks the angiotensin receptor. By blocking

the action of angiotensin, losartan relaxes the muscles, dilates blood vessels and thereby reduces blood pressure….Hydrochlorothiazide (HCTZ) is a diuretic (water

pill) used for treating high blood pressure (hypertension) and accumulation of fluid. It works by blocking salt and fluid reabsorption in the kidneys, causing an

increased amount of urine containing salt (diuresis).”

Uh-oh, that leaves blood glucose, which has never been high for me.  However, my A1C has been high since this whole CKD ride has started.A1C

Let’s back track a little. The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/a1c-test/basics/definition/PRC-20012585  tells us:

“The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in

red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.”

I don’t have diabetes…yet.  It’s becoming clear that I will – in addition to worsening my CKD – if I don’t pay even more attention to my diet and become more stringent about sore kneeexercising.  It’s sooooo easy to say not today when the arthritis rears its ugly head…or knee.

It’s been said there’s no way to do it, but to do it (by me, folks.  Ask my children.) So now I need to take my own advice and get back to the stricter enforcement of the rules I know I need to live by.  After all, they let me live.

If you ever needed proof that the body is an intricate thing with all its part being integrated, you got it today.

Until next week,

keep living your life!

What If You Don’t Go?

NYCWe just got back from New York, which included stays in three different places. Only one- my buddy’s pied `a terre in Bay Ridge had a private bath… one bathroom for the two of us.  In my niece’s house on Long Island, we shared two bathrooms with two other adults and four children.  In Manhattan, we shared two baths with twenty other tourists. This didn’t exactly make for instant bathroom use when you needed it.

To add insult to injury, I’ve grown very accustomed to Arizona’s immaculate public bathrooms with automatic faucets, flushes, soap dispensers, and towels. Let’s just say New York has quite a bit of room for improvement in this area. The end result was that I didn’t use the facilities as often as I needed to.

And I started wondering… what’s happens to the urine you don’t void?

toliet First things first: according to National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)National Institutes of Health (NIH)  at http://kidney.niddk.nih.gov/kudiseases/pubs/yoururinary/#points,

“The amount of urine a person produces depends on many factors, such as the amounts of liquid and food a person consumes and the amount of fluid lost through sweat and breathing.”

It was New York; it was not only hot, it was humid.  I was drinking my allotted 64 ounces of liquid daily. I was breathing – as usual – and I was sweating (perspiring?) quite a bit. Of course, I was eating, too.

In What Is It And How Did I Get It? Early Stage Kidney Disease, I explained that Book signing

“Ingested food and liquid are digested in the stomach and bowels, and then absorbed in the blood.  A renal artery carries the blood waste and water to the kidneys while a renal vein carries the filtered and sieved waste from the kidneys…..Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.

The problem with unregulated minerals, such as sodium and potassium is that these minerals are needed to remain healthy but too much in the bloodstream becomes toxic. The kidneys remove these toxins and change them into urine that enters the bladder via the ureter.  Look at the picture of a front view of your internal organs …. [You can see]  the kidneys, then the ureter above the bladder.  Below the bladder is the urethra, the passage to the outside of your body. This is, of course, a highly simplified explanation.  The toxins would build up and poison you if the kidneys were damaged.”

This is right at the beginning of the book on pages 2 and 3.

Now that we know how it works, we can go back to my original question: What if you don’t urinate when your bladder is full?urinary

Well, maybe we should explore the bladder a bit more. WebMD at http://www.webmd.com/urinary-incontinence-oab/picture-of-the-bladder tells us the following about the bladder:

“The bladder stores urine, allowing urination to be infrequent and voluntary. The bladder is lined by layers of muscle tissue that stretch to accommodate urine. The normal capacity of the bladder is 400 to 600 mL. During urination, the bladder muscles contract, and two sphincters (valves) open to allow urine to flow out. Urine exits the bladder into the urethra, which carries urine out of the body.”

So, there I was with a full bladder and my body telling me to empty it, but I didn’t.  What happened to the urine?

bladderIt’s time to mention that the ureters don’t have any way to stop the urine flowing back into the kidneys if you don’t void.  There are two sphincters at the bottom of your bladder leading into the urethra, but you can only voluntarily control one of them.

Interesting fact: the urethra is longer in men because it passes through the penis.  Sorry fact: because our urethras are shorter, we women are more prone to urinary tract infections.

Uh-oh, urine was moving back into my poor, already compromised kidneys. This urine flow back could further damage the capillaries and tubules making them even less effective at filtering my blood. The kidney’s pelvis and calyces – their central collection region – might become dilated, causing hydronephrosis.  Or I might end up with a kidney infection from the bacteria forced back in.  This is called pyelonephritis.

Hang on there.  I’m going to use the medical dictionary at http://www.merriam-webster.com/medical  for some definitions here.

CALYX (plural ca·lyx·es or ca·ly·ces  also ca·li·ces): a cuplike division of the renal pelvis surrounding one or more renal papillae

CAPILLARY a: resembling a hair especially in slender elongated form   b: having a very small borekidney interior

HYDRONEPHROSIS: cystic distension of the kidney caused by the accumulation of urine in the renal pelvis as a result of obstruction to outflow and accompanied by atrophy of the kidney structure and cyst formation

RENAL PAPILLA: the apex of a renal pyramid which projects into the lumen of a calyx of the kidney and through which collecting tubules discharge urine

RENAL PELVIS: a funnel-shaped structure in each kidney that is formed at one end by the expanded upper portion of the ureter lying in the renal sinus and at the other end by the union of the calyxes of the kidney  

TUBULE: a small tube; especially: a slender elongated anatomical channel

But, wait before you get all excited about the damage I’ve done to myself – or worse, yourself. You should know it would take a tremendous amount of flow back before any of this happens.  Be aware of your urge to urinate, follow through if you can, and don’t worry if you can’t every once in a while (But remember that I’m not a doctor.) And I wonder why I’ve felt the urge to urinate the whole time I’ve been writing today’s blog.

Many thanks to the oddly informative website http://www.straightdope.com/ for pointing me in the right direction for answers to my question. kidney-book-coverI have a question for all of you:  I am thinking of turning the previous blogs into a book; is that something you’d be interested in?

Until next week,

Keep living your life!

March and National Kidney Month are Hare, I Mean Here.

My wake up alarm is the song ‘Good Morning,’ and that’s exactly what this is.  The sun is out, it’s warm but not hot, I’m listening to some good music, and I’m alone in the house for the first time since Bear’s October surgery.  I am thankful that he is driving himself to his doctors’ appointments. That is progress!   desktop

Talking about progress, it’s National Kidney Month and you know what that means… a recap of many of the organizations listed in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease that may help with your Chronic Kidney Disease.  Ready?  Let’s start.

{I’m only including online addresses since this is on online blog.}

 

American Association of Kidney Patients (AAKP) 

https://www.aakp.org

MARCH IS NATIONAL KIDNEY MONTH (from AAKP’s website)

This is an advocacy group originally started by several dialysis patients in Brooklyn in 1969.  While they are highly involved with legislation, I see their education as the most important aspect of the group for my readers.

“Take some time and browse through our educational resources including our Resource Library that contains past and present published information from the American Association of Kidney Patients. Educate yourself on specific conditions, medicine, lifestyle improvement and get the latest news and information from the renal community.”

kidney-month-2014-v1  The American Kidney Fund

     http://www.kidneyfund.org/

While they work more with end stage Chronic Kidney Disease patients, they also have an education and a get tested program.

“The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.”

National Kidney Disease Education Program

www.nkdep.nih.gov

This is an example of the many videos available on this site.  They are also available in Spanish.

What is chronic kidney disease? Approach 1 A doctor explains what chronic kidney disease (CKD) is and who is most at risk. Learn more about diabetes, high blood pressure, and other kidney disease risk factors. Length 00:53  Category CKD & Risk

One of my favorites for their easily understood explanations and suggestions.  Their mission? “Improving the understanding, detection, and management of kidney disease.”  They succeed.

National Kidney Foundation

www.kidney.org

http://www.youtube.com/watch?v=s2U2iZQxkqI#t=1 (This is the link to their National Kidney Month Rap with Sidney the Kidney)

I have guest blogged for them several times and been glad to work with them whenever they need me.  The website is thoroughly helpful and easy to navigate. This is what you find if you click on ‘Kidney Disease’ at the top of their home page. What I really like about this site is that it’s totally not intimidating.  Come to think of it, none of them are, but this one feels the best to me.  (I can just hear my friends now, “Oh, there she goes with that spiritual stuff again.”  One word to them: absolutely!) Notice the Ask the Doctor function.

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

www.kidney.niddk.nih.gov  National Institute of Diabetes and Digestive and Kidney Diseases Logo.

“Just the facts, ma’am,” said Sergeant Friday on an old television show and that’s what you get here.

This is their mission statement:

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

And let’s not forget

 Renal Support Network

www.rsnhope.org

This was initiated by a Chronic Kidney Disease survivor.  The part I like the best is the Hopeline.  While I have not called myself, I have referred people who were newly diagnosed and, well, freaking out.  I couldn’t tell them what the experience of dialysis is like, but these people can.

Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD)….  Call our Hopeline (800) 579-1970 (toll-free) Monday through Friday from 10am to 6pm (PT) to talk to a Person who has lived kidney disease.

Baxter Healthcare Corporation.

http://www.renalinfo.com/us

“… web site designed and developed to provide information and support to those affected by kidney failure. Renalinfo.com is supported through and educational grant from Baxter Healthcare Ltd, a company that supplies dialysis equipment and services to kidney patients worldwide.

They have all the information a newly diagnosed CKD patient could want and, while funded by a private company, do not allow paid advertisements.  Their site map is proof of just how comprehensive they are.

While many of the other sites offer their information in Spanish as well as English, if you click through the change language function here, you’ll notice there are many languages available.

Rest assured that these are not the only organizations that offer support and education.  Who knows?  We may even decide to continue this next week, although that’s so close to March 13th’s World Kidney Day that we’ll probably blog about that for next week.

I interrupt myself here to give you what I consider an important commercial message.  Remember that game I play about using the money from the book to pay off what I paid to produce the book so I can put more money into donations of the book?  There was a point when sales covered the cost of publishing.  Now they’ve covered the cost of digitalizing the book so it could be sold as an e-book.  Another milestone!  (Now there’s just about $15,000 worth of donations to pay off.)54603_4833997811387_1521243709_o

While I’m at it, I find I cannot recommend Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. but only because it was published in 2002.  The world of nephrology has changed quite a bit since then and continues to change daily. While I enjoyed the information, I’m simply not convinced it’s still applicable.

For those of you who are newly diagnosed, I sincerely wish these websites give you a starting point so you don’t feel so alone. (I’m sorry the book isn’t interactive.)

Until next week,

Keep living your life!

I’m Tired.

baby-shots-5I’m tired.  I’m almost always tired.  That is my most prevalent complaint lately.  And why?  Because I have Chronic Kidney Disease, Stage 3A. I thought I remembered this particular symptom doesn’t appear until dialysis starts – at stage 5 – so I decided to re-research my research… and surprised myself with the results.

Just in case you don’t remember, I retired from teaching at the community college last February (right after my 66th birthday) and from acting a month later. Two careers down and a year older, I’m still tired. True, I do blog every week and work on SlowItDown.  However, it’s still two careers down.

I was becoming concerned.  According to Donna D. Ignatavicius, MS RN, and M. Linda Workman, Ph.D, authors of Medical-Surgical Nursing: Critical Thinking for Collaborative Care, I shouldn’t be.  They explain that patients with early symptoms of chronic renal failure may complain of a general feeling of illness and that lack of energy and fatigue are often reported without any identifiable cause.

By the way, the book is available on Amazon, but I cannot recommend it yet since I just ordered it.  More on that after I read it. Okay, so maybe my CKD hadn’t advanced and maybe I hadn’t developed diabetes. Maybe it was just the stage of CKD I was in.

I wanted to check with my old standby, The Mayo Clinic.  Their website told me: “Signs and symptoms of kidney disease may include:Location of Kidneys

  • Nausea
  • Vomiting
  • Loss of appetite
  • Fatigue and weakness
  • Sleep problems
  • Changes in urine output
  • Decreased mental sharpness
  • Muscle twitches and cramps
  • Hiccups
  • Swelling of feet and ankles
  • Persistent itching
  • Chest pain, if fluid builds up around the lining of the heart
  • Shortness of breath, if fluid builds up in the lungs
  • High blood pressure (hypertension) that’s difficult to control”

You can read more about these symptoms at: http://www.mayoclinic.org/diseases-conditions/kidney-disease/basics/symptoms/con-20026778

Wait a minute!  Where in heaven’s name was loss of appetite when you needed it!  Here I am with CKD, aging, exercising, following the renal diet, and not losing weight. I realize that sounds pretty shallow.  Let me explain.  My weight has always been a problem.  I’m not saying I WANT another symptom of CKD, but since I have CKD anyway, I would have preferred that symptom.

hiccupsI also had never questioned why I have hiccups so often.  Bear thought it was that I ate too fast, so I slowed down. (Hey, almost 45 years of running up to the fourth floor cafeteria, waiting in line, and then bolting down your food so you can get to the restroom and drop off your reports in the office three flights back down before teaching your next class doesn’t dissipate that quickly.  Long term habits….)

And why is fatigue a symptom of CKD in the first place?  I found the following at: http://www.kidneyabc.com/ckd-treatment/991.html (Which looks like it might just be a Chinese herbal site; it wasn’t quite clear.): “Fatigue in CKD (Chronic Kidney Disease) is most often caused by anemia in which the count of red blood cells are lower than normal. As red blood cells distribute oxygen to body tissues and cells, a shortage of oxygen can cause fatigue. Anemia begins in early stage of CKD, and tends to get worse as renal function decreases and less erythropoietin (EPO) is produced by kidneys.”

new blog shotThis is something that I explained in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I’ve been diagnosed with non-anemic low iron levels. Well, it’s nice to know I’m not anemic, but the low levels of iron produce the same fatigue. Why?

The National Kidney and Urologic Diseases. Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf explains: “Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidney, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.”

You can’t correct it by simply taking EPO injections.  It’s just not that simple.  To quote what I wrote in my book, “…EPO can worsen your HBP – which can both cause and be caused by CKD.  Most nephrologists agree it’s better to take the EPO injections and increase your HBP medication to control your hypertension. “

That was thought to be true when I researched for the book over three years ago, but since then the medical science community has discovered that synthetic EPO may be harmful to your body in that it may cause the body to produce antibodies for EOP.  Then your liver becomes involved, too, since it produces a small amount of EPO.flu

So, what can you do for this fatigue?  I went to the same Chinese herbal site because their recommendations were simply so logical.

“Regular exercises have many benefits for stage 3 CKD patients:

Boost your energy.

Improve your immune system.

Alleviate edema.

Lower high blood pressure.

Aerobic exercises such as walking, jogging, dancing, swimming, etc. are preferred. And remember to avoid strenuous exercises.”

How can you argue with that?  I couldn’t, especially since dancing is included!

happy birthdayThank you all for your birthday wishes.  I like to respond to each of you individually and hope I haven’t missed anyone.  Let me know if I have. It was a lovely day with the kids, and neighbors helping me celebrate, as well as my long distance friends emailing, snail mailing, Facebook inboxing, and texting.  I truly feel cherished by those in my communities.

I also believe I’ve gotten across to the French division of Amazon by writing in English and letting them translate it instead of giving in to my own misguided insistence upon using my fractured French.  Take a look for yourself by going to Amazon’s website, scrolling down to the bottom of the page where the different countries of operation are listed, hitting France, and inputting the title of the book – in English.

I’m tired… time to take a rest.

Until next week,

Keep living your life!

Back To Basics

My daughter Abby and I just spent the weekend at Landmark Education’s Access to Communication Course.  If I weren’t already a Landmark graduate, I’d say I couldn’t believe what I learned.  Since I am a Landmark graduate, I’ll share with you my delight at learning just how simple and loving communication can be. people talking

Of course, I’d urge you graduates reading this blog to register for this course and those of you who aren’t yet graduates to explore the Landmark Forum.  You might get an idea of how forceful this work is when I tell you that my upcoming marriage is a result of it.

As a matter of fact, there’s an introduction this Wednesday night at the Scottsdale center from 7 – 11.  The address is 16100 North Greenway-Hayden Loop, Suite 108, and the phone number is 602-222-1110. You can always contact me and we can go together.

I chose communication about CKD as the topic for this week’s blog because I have been doing just that… and being startled over and over again at the number of people I’ve spoken with that know nothing about Chronic Kidney Disease.  So, this week, we go back to basics.

Anyone know what the kidneys are and what they do?  Will the gentleman with his hand raised in the back of the room answer the question, please?  Oh, it’s my future son-in-law, Sean, and he’s quoting me!

kidney locationOn page 1 of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, Gail Rae wrote, “Later, I learned that the kidneys were two reddish brown organs which lay on the muscles of the back on either side of your spine above hipbone level and below the diaphragm… Some have compared their size to that of a clenched fist or a large computer mouse, and the right one lies lower than the left since the liver is on that side.” [You can order digital copies of the book at Amazon.com and B&N.com.  Print copies are available at Amazon.com and myckdexperience@gmail.com.]

I couldn’t have said it better myself.  [ Ha Ha. Get it?  I DID say it.] Now about their function… Ah, lady on the left side of the room. Estelle, my dear East Coast buddy, I didn’t know you were here.

According to The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), National Institutes of Health (NIH) at http://kidney.niddk.nih.gov/kudiseases/pubs/yourkidneys/#kidneys, “Every day, a person’s kidneys process about 200 quarts of blood to sift out about 2 quarts of waste products and extra water. The wastes and extra water become urine, which flows to the bladder through tubes called ureters. The bladder stores urine until releasing it through urination.” Nice job!

What else do they do?  Nima?  Yes, you may answer questions even though you’re my daughter.  Well then:

  • Control your body’s chemical balance
  • Help control your blood pressure
  • Help keep your bones healthyBook signing
  • Help you make red blood cells

You’ve learned well.  What was your source?  The American Kidney Fund at http://www.kidneyfund.org/kidney-health/kidney-basics/your-kidneys.html.

That’s a good one, as are all the others mentioned here.  They each contain far more information than we’ve included in today’s blog and can make you a sort of neophyte kidney expert.  Well, maybe someone who knows about his/her early stage chronic kidney disease or that of someone you know and/or love might be a more realistic title.

More?  Okay.  How many people have chronic kidney disease?  Look there.  Lara, my step-daughter, who is in very good health (thank the powers that be) is here.  Ummm, I did tell you that number but it’s changed a bit since then.  It’s 26 million in the USA alone and raising.  Those are the diagnosed people.  There are millions of other who have not yet realized they have CKD according to The National Kidney Foundation at     http://www.kidney.org/kidneydisease/aboutckd.cfm#facts

How do you know if you have it?  Excellent question, Kelly. As another healthy person, my step-daughter has asked an important question. Since there are rarely symptoms, it’s all about blood and urine tests.  A simply stated E-how article at http://www.ehow.com/how_2051919_test-kidney-disease.html explains without overwhelming.  Basically, your doctor is looking for protein in your urine and at the following values in your blood test: GFR (glomerular filtration rate) and bun (blood urea nitrogen).  I don’t advocate eHow for medical information, but this one is not that bad.

I will, Bear, right now.  The wonderful man I’ll be marrying in April asked me to make certain I write about the renal diet.  He follows it with me so we don’t have to cook two different meals when we do cook and he lost 60 pounds in the first several months of doing so.  I could hate him for that, except that I already love him.

The renal diet is only one part of the treatment. [There’s also exercise, adequate sleep and lack of stress.] I thought the one at Buzzle (http://www.buzzle.com/articles/diet-for-chronic-kidney-disease-ckd.html) was a good example until I realized there was no potassium restriction on this diet.  I follow that of the Northern Arizona Council of Renal Dietitians. What this tells us is that you need to pay attention to the specific renal diet the nephrologist (kidney and high blood pressure expert) has given you or your loved one, friend, and/or co-worker.water melon

Basically, sodium, phosphorous, protein, potassium and fluids are restricted. Sometimes, I feel like my fluids are exaggerated rather than restricted – like when I’m writing – and have to remind myself to drink so I can meet my 64 ounces/per day ‘limit.’

My neighbor and friend, Amy, just asked me to backtrack a bit and discuss the causes of CKD.  That would be helpful, wouldn’t it?

eMedicine at http://www.emedicinehealth.com/chronic_kidney_disease/page3_em.htmers this.  Two thirds of ckd is caused by high blood pressure or diabetes, but they neglected to mention that sometimes ckd is simply a result of growing older – as in my case.

You know the people I mentioned are not in my office as I write this blog, so here’s a public thank you to each of them for the loan of their names.  I kind of think they would have offered those answers or asked these questions if they were here with me right now.

Check out those websites.  They offer quite a bit of information.

Until next week,

Keep living your life!

The Other Clearinghouse

Kidney and Urologic Diseases Clearinghouse

a service of the NIDDK

We all know about the Publishers’ Clearinghouse and how we can win prizes from it (or can we?).  The National Kidney and Urologic Diseases Information Clearinghouse is much more important to us as Chronic Kidney Disease patients, although it doesn’t seem to be something a lot of us are informed about.  So today, I’m going to introduce you to each other via their Winter 2011 Kidney Disease Research Update. Reader, meet NKUDIC.  NKUDIC, meet Reader.  Get to know each other.

Kidney Disease Research Updates
Winter 2011

Report Calls for Increased Coordination of Federal CKD Prevention and Treatment Efforts

Federal CKD Matrix diagram showing federal agencies involved in CKD activities. The six-sided, wheel-like diagram clusters agencies according to function. Listed under 'Surveillance' is CDC, CMS, DoD, HRSA, HIS, NIDDK, and VA. Listed under 'Professional Education and Outreach' is CDC, CMS, DoD, HRSA, HIS, NIDDK, and VA. Under 'Delivery and Payment of CKD Care' is CMS, DoD, HRSA, HIS, NIDDK, and VA. Listed under 'Scientific Research' is CDC, FDA, HRSA, NIDDK, and VA. Listed under 'Quality Improvement/Evidence of Therapy' is VA, IHS, HRSA, DoD CMS, CDC, and AHRQ. Listed under 'Public Education and Outreach' is VA, NIDDK, IHS, HRSA, DoD, and CMS.

Increased coordination of federal health efforts would vastly improve chronic kidney disease (CKD) prevention and care, according to a recent report from the National Kidney Disease Education Program (NKDEP), part of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).

“Current Federal efforts span a range of missions, including surveillance, professional, and patient education, outreach to high-risk populations, quality improvement, and delivery of, as well as payment for, CKD treatment,” wrote NKDEP Director Andrew S. Narva, M.D., F.A.C.P., and co-authors in the May 2010 issue of Advances in Chronic Kidney Disease. “However, Federal agencies do not function as a comprehensive system or, indeed, as a system at all.”

Medicare spends more than $49 billion annually to care for patients with kidney disease. The NIDDK, together with other National Institutes of Health Institutes and centers, currently funds a $523 million kidney disease research portfolio. Other federal organizations, including the Centers for Disease Control and Prevention, the Indian Health Service, and the U.S. Department of Veterans Affairs, also contribute major funds  and resources directed at CKD prevention and care.

Despite these enormous efforts, the percentage of people with CKD receiving recommended care has remained unchanged for many years. Fewer than 35 percent of people with diabetes and CKD are getting eye examinations or tests to measure blood sugar control or blood lipids. Blood pressure control among CKD patients remains poor. And despite tests that show the kidneys are not adequately filtering blood, many people with CKD are not being diagnosed and therefore are not receiving
care to slow CKD progression.

About 23 million Americans 20 years old and older have CKD. Associated with diabetes, obesity, and cardiovascular disease, CKD prevalence has dramatically increased during the past 30 years. CKD is enormously expensive to treat, representing more than one-quarter of Medicare expenditures.

The report cited Quality Improvement Organizations (QIOs)—tasked by Congress to improve the quality of Medicare services—as having the potential to make great strides in CKD care quality. Each state has in place a QIO that consists of a private contractor or nonprofit organization. A recent initiative, called Ninth Scope of Work, focuses QIOs on determining the rate of diabetes-related kidney failure, slowing CKD progression by ensuring CKD patients are getting high blood pressure medication, and encouraging the early placement of arteriovenous fistulas—the best long-term vascular access—for CKD
patients starting hemodialysis.

Kidney Interagency Coordinating Committee (KICC)

The KICC, chaired by Narva, brings together representatives from nine Government agencies involved in CKD to communicate and coordinate activities across sectors.

“The barriers to achieving greater effectiveness begin with poor visibility,” wrote Narva and co-authors. “Federal program managers experience difficulty in learning about, and staying abreast of, what other Federal agencies do related to CKD.”

In response, the KICC developed an interactive, web-based tool that summarizes CKD-related activities from all nine KICC participating agencies. Called the KICC Matrix, the tool is available on the NKDEP website at www.nkdep.nih.gov/about/kicc/index.htm.

Recommendations

Among the report’s recommendations are the creation of a cross-agency initiative to define CKD-relevant improvement measures, an assessment of current CKD clinical guidelines, the development of better kidney failure prediction tools, and the coordination of efforts to strengthen CKD educational materials for health care providers. The report also recommends looking for successful models of federal collaboration outside CKD prevention and care.

The NIDDK has easy-to-read booklets and fact sheets about CKD. For more information or to obtain copies, visit www.kidney.niddk.nih.gov.

NIH Publication No. 11–4531

This update can be read in the original at: http://nkudic.circlesolutions.com/about/Research_Updates/KidneyDiseaseWin11/3.htm

Notice there is not necessarily new information in the update.  The purpose of bringing it to your attention is to acquaint you with another source of information about your disease.  Why not take a look at some of their other articles?

Until Friday,

Keep living your life.