How Will They Know?

Let’s start this month with a guest blog by American Medical Alert IDs. Why? Although I am not endorsing this particular brand, because I clearly remember being give Sulphur drugs in the Emergency Room when I was by myself and unable to let the medical staff there know I have Chronic Kidney Disease. Why? Because I remember that my husband fell when I was out of town. His grown children took him to the emergency room but didn’t know about his latex allergy and he was in no condition to explain.

 

Everything You Need To Know About Medical Alert IDs for Chronic Kidney Disease


Are you debating on getting a medical alert ID for chronic kidney disease? It’s time to take the confusion out of choosing and engraving a medical ID. This post will show you everything you need to know so you can enjoy the benefits of wearing one.

Why Kidney Patients Should Wear a Medical Alert ID

A medical ID serves as an effective tool to alert emergency staff of a patient’s special care needs, even when a person can’t speak for themselves. When every second counts, wearing a medical ID can help protect the kidney and safeguard its remaining function.

In emergencies, anyone diagnosed with chronic kidney disease or kidney failure may require special medical attention and monitoring. It is important that patients are able to communicate and identify their medical condition at all times. This includes individuals who are:

  • Undergoing in-center hemodialysis
  • Undergoing home hemodialysis
  • On Continuous Ambulatory Peritoneal Dialysis (CAPD)
  • On Continuous Cycling Peritoneal Dialysis (CCPD)
  • Transplant recipients
  • Diagnosed with diabetes

Delays in getting the proper treatment needed for chronic kidney disease may lead to the following complications:

  • Fatal levels of potassium or hyperkalemia. This condition can lead to dangerous, and possibly deadly, changes in the heart rhythm.
  • Increased risk of peritonitis or inflammation of the membranes of the abdominal wall and organs. Peritonitis is a life-threatening emergency that needs prompt medical treatment.
  • Anemia or decreased supply in red blood cells. Anemia can make a patient tired, weak, and short of breath.
  • Heart disease, heart attack, congestive heart failure, and stroke
  • High blood pressure which can cause further damage to the kidneys and negatively impact blood vessels, heart, and other organs in the body.
  • Fluid buildup in the body that can cause problems with the heart and lungs.

According to Medscape, the most common cause of sudden death in patients with ESRD is hyperkalemia, which often follows missed dialysis or dietary indiscretion. The most common cause of death overall in the dialysis population is cardiovascular disease; cardiovascular mortality is 10-20 times higher in dialysis patients than in the general population.

Kidney Patients Who Wear a Medical ID Have 62% Lower Risk of Renal Failure

In a study of 350 patients, primarily in CKD stages 2 through 5, those who wore a medical ID bracelet or necklace had a 62% lower risk of developing kidney failure, based on eGFR. Wearing a medical-alert bracelet or necklace was associated with a lower risk of developing kidney failure compared with usual care.

Wearing a medical ID can serve as a reminder to look after your health and make the right choices such as taking medication on time and sticking to proper diet.

6 Things to Engrave on Kidney Disease Medical ID

A custom engraved medical alert jewelry can hold precise information that is specific to the wearer’s health condition. Here are some of the most important items to put on a chronic kidney disease or kidney failure medical ID:

  • Name
  • Medical information – including if you have other medical conditions such as diabetes or high blood pressure
  • Stage of CKD or kidney function
  • Transplant information
  • Current list of medicines
  • Contact person

Some patients have a long list of medications that may not fit on the engraved part of an ID. An emergency wallet card is recommended to use for listing down your medicines and other information or medical history.

 

Click here to enlarge chronic kidney disease infographic

Do you wear or carry a form of medical identification with you? Please share your experience or tips with us by posting a comment.

Ready for a new topic? All right then. Ever have a problem drinking your coffee? I know I have… until I followed these tips from the Cleveland Clinic at https://health.clevelandclinic.org/coffee-giving-you-tummy-trouble-try-these-low-acid-options/:

Here’s hoping that next cup of coffee treats you well.

Until next week,

Keep living your life!

 

Say That Again

I have been uttering that phrase for years, maybe even a decade. Each time I went for a hearing test, I was told I was getting there, but I didn’t need hearing aids yet. This year it changed. I’ll bet it’s because I have CKD.

This is from SlowItDownCKD  2011:

“Research shows that hearing loss is common in people with moderate Chronic Kidney Disease. As published in the American Journal of Kidney Diseases and highlighted on the National Kidney Foundation web site, a team of Australian researchers found that older adults with moderate Chronic Kidney Disease (CKD) have a higher prevalence of hearing loss than those of the same age without CKD.”

How moderate CKD and hearing are connected is another matter, one that apparently isn’t as well documented. Here’s what I found on Timpanogos Hearing and Balance’s website at https://utahhearingaids.com/hearing-loss-likely-individuals-chronic-kidney-disease/ and the other sites I searched. This comes from the same Universtiy of Sydney study I cited in my 2011 blog.  A study that was completed in 2010… eight years ago.

“The link between hearing loss and CKD can be explained by structural and functional similarities between tissues in the inner ear and in the kidney. Additionally, toxins that accumulate in kidney failure can damage nerves, including those in the inner ear. Another reason for this connection is that kidney disease and hearing loss share common risk factors, including diabetes, high blood pressure and advanced age.”

Wait a minute. I wrote about this in SlowItDownCKD 2014, too:

“Suddenly it became clear. If toxins are – well – toxic to our bodies, that includes our ears. My old friend The Online Etymology Dictionary tells us the word toxic is derived directly from late Latin toxicus, which means ‘poisoned.’

Now I got it. Moderate CKD could be poisoning our bodies with a buildup of toxins. Our ears and the nerves in them are part of our body. Damaged nerves may cause hearing loss. I’d just never thought of it that way before. Sometimes all it takes is that one last piece of the puzzle to fall in place.

Hmmm. High blood pressure is the second most common leading cause of CKD and it can also lead to hearing loss. Let’s take a look at that.

According to WebMD

‘Certain illnesses, such as heart disease, high blood pressure, and diabetes, put ears at risk by interfering with the ears’ blood supply.’

I went right to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to figure out how since it includes a diagram from The National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health that demonstrates how high blood pressure is caused… and if you read on, you’ll read about the problems high blood pressure causes….and this sentence:

‘Humans have 10 pints of blood that are pumped by the heart through the arteries to all the other parts of the bodies.’

That would include the ears. Moderate CKD might mean that blood is tainted by the toxins our compromised kidneys could not rid us of.”

I was frustrated at not finding any more recent research, but sometimes you just have to take what you can get… like now.

I thought of an online hearing test I’d heard (Ouch! Poor word choice there.) about and decided to give it a try since it asked questions rather than having you listen to sounds as you would in an audiologist’s office. Here are my results from the  Better Hearing Institute at http://www.betterhearing.org/check-your-hearing

“SUMMARY

 Your hearing loss would be described as: Mild Hearing Loss. A hearing test may be necessary to monitor your hearing loss.

DETAIL REPORT

 Your Check Score: You scored 21 out of a possible 60 points. The remainder of this report will tell you what your score means.

Your Check Norm: Your score of 21 is at the 19 percentile of people with hearing loss in the United States, where low percentages mean lower hearing losses and high percentages mean more serious hearing losses compared to other people with hearing loss….

Subjective Hearing Loss Description: Based on the responses of more than 10,000 people with hearing loss and their family members, they would describe your hearing loss as: Mild Hearing Loss.

What Your Hearing Loss Means for Your Quality of Life: Research has shown that the higher your predicted hearing loss, the more likely the following quality-of-life factors may be negatively affected:

  • irritability, negativism and anger
  • fatigue, tension, stress and depression
  • avoidance or withdrawal from social situations
  • social rejection and loneliness
  • reduced alertness and increased risk of personal safety
  • impaired memory and ability to learn new tasks
  • reduced job performance and earning power
  • diminished psychological and overall health

What should you do next? Based on your score, we recommend the following: A hearing test may be necessary to monitor your hearing loss. Now hearing loss is situational, and the next step you take is dependent on your need to hear in various listening situations. Some people can live with mild hearing losses. Others, such as teachers and therapists whose auditory skills are very important for their everyday work, require corrective technology — such as hearing aids — even when their hearing loss is at mild levels. It becomes important for them to do something about their hearing loss so they can function adequately in their work environment….

References:

To review the study this report is based on visit:
http://www.betterhearing.org/hearingpedia/bhi-archives/eguides/validity-and-reliability-bhi-quick-hearing-check

To review research on hearing loss and quality of life visit:
www.betterhearing.org/hearingpedia/counseling-articles-tips/impact-treated-hearing-loss-quality-life as well as the following publication conducted by the National Council on the Aging (NCOA):
Hearing Aids and Quality of Life

My audiologist will be introducing me to hearing aids in the new year. I thought I had considered all the ramifications of CKD. And, frankly, I thought I understood what was happening to my kidneys. It looks like I did understand the loss of some kidney function… just not how that would affect the rest of my body.

I don’t know whether to break out the duct tape or the crazy glue to keep this aging body in one piece. Are you laughing? Good, because I wanted to have this Chanukah blog leave you in a good mood. I know, I’ll break out the dreidles in your honor. Happy Chanukah!

Until next week,

Keep living your life!

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!

 

 

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

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This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

It’s National Kidney Month

March is National Kidney Month.  In the last few years, I’ve offered a new Chronic Kidney Disease book for sale during this month, but free on IMG_1398World Kidney Day. This year that’s March 10th.  The third Book of Blogs: Moderate Stage Chronic Kidney Disease, this year’s offering, has been retitled SlowItDownCKD – 2015. If my CKD writing has a ‘brand name,’ that’s it. Same writer, same type of blogs; just a new title for the series.  Check both Amazon.com on March 10th for your free digital copy.

There’s a reason there’s such attention being paid to our kidneys.  Last year’s National Kidney Month ‘Dear Abby column’ explains.

“DEAR ABBY: Hypertension runs in my family, but as a pretty healthy 49-year-old, I didn’t think much about it. I never realized that my pounding headaches were a direct result of high blood pressure. To make matters worse, the same high blood pressure that was causing my head to throb was also destroying my kidneys.

I wish I had known about my high blood pressure sooner and taken it seriously. When I finally learned about my kidney damage, it was too late to save them.nephrons

More than 73 million people are at risk for developing kidney disease, and I sincerely want to help them avoid this fate. My battle with kidney disease has turned me into an advocate for patients and those who are at risk. In honor of National Kidney Month in March and World Kidney Day on March 12, (Me: That was the date last year.) Will you please help me spread the word? — Lance Taylor in Minnesota

DEAR LANCE: I’m pleased to help you in this worthwhile effort. According to the National Kidney Foundation, 1 in 3 American adults is at risk for kidney disease. Major risk factors for kidney disease include diabetes, high blood pressure, a family history of kidney failure and being age 60 or older. Additional risk factors include kidney stones, smoking, obesity and cardiovascular disease.

Kidney disease often goes undetected because it lacks physical symptoms until the very late stages. By then the organs have already failed. But early detection, healthy lifestyle changes and proper treatment can slow the progress of kidney disease. Those at risk should have simple blood and urine tests to check if their kidneys are working properly.

Readers, if you are at risk, during your next physical examination, ask your health care practitioner to check your kidneys. To learn more about prevention, visit kidney.org. You will also find information about free KEEP Healthy kidney screenings in your area.”

NKF-logo_Hori_OBI’ve written about the more than 50 local offices nationwide that help the NKF provide early-detection screenings and provide other vital patient and community services. I went to the website, clicked on ‘Keep Healthy Event in your area,” and up popped the locations of this particular event.

Several years ago, my daughter Nima asked if could guest blog during National Kidney Month from the perspective of someone who loves a person with CKD. These are some of the highlights of that blog.

“I have to admit when my mother first told me she had CKD I freaked out ever so slightly. My knowledge of CKD was minimal, if that, and it took more than a few times of Ma telling me that CKD was in fact manageable and not a death sentence to calm down…..

One thing I had to get used to was reminding myself to mention at doctor visits that a parent has CKD, and to please take blood work to keep an eye on my own GFR levels. Every now and then I’d also get a helpful reminder from Ma right before a doctor visit.

I … have another resource that not everyone else has: I have a mother who is also writing a very detailed book (Working on the 4th one now.) about her experiences with discovering she had CKD. Getting a chance to read the manuscript of her upcoming book was probably where I got the meat and potatoes of my CKD education. (Nima is the professional Reader for all the CKD books I write.)nima kidney

For those out there that have a loved one that was recently diagnosed with CKD ….don’t be afraid to ask questions about what you can do to help and what you should know about how CKD affects your family member or loved one. I was always worried about tiring my mother out until she finally explained to me that as long as she gets a chance to lay down/nap before we go out, she’s usually fine.”

But it’s not just getting tired; the following appeared on Yahoo’s PRWEB on Monday, March 14, 2011. I took the online test mentioned in the article (which is still there and highly recommended) and, sure enough, I need to see an audiologist. Consider taking the online test yourself after you read this little known information about CKD patients.

“People with Chronic Kidney Disease Should Have Their Hearing Checked:

March is National Kidney Month

 People with Chronic Kidney Disease (CKD) should take the Across America Hearing Check Challenge—a free, quick, and confidential online hearinghearing test at http://www.hearingcheck.org. The non-profit Better Hearing Institute (BHI) is offering the test as part of its effort to raise awareness of the link between Chronic Kidney Disease and hearing loss. March is National Kidney Month. BHI’s online test will help people determine if they need a comprehensive hearing check by a hearing professional.”

Every part of you is affected by your Chronic Kidney Disease. That means that everyone in your life is affected by it, too. Bear knows I’ve got to exercise each day no matter what we have planned. My friends and family know that inviting us for dinner means I may not be able to eat what they’ve cooked, even if it’s ‘healthy.’ Think about that a bit and you’ll realize CKD is serious.What is it

Until next week,

Keep living your life.

Blood and Thunder, Without the Thunder

I’ve been thinking a lot about blood lately and realize it’s time for a refresher about blood and CKD. It’s been doctor-visits-week for me and each one of them wanted to talk about blood test numbers… because I have Chronic Kidney Disease and my numbers are the worst they’ve been in seven years.Blood Oxygen Cycle Picture 400dpi jpg

This made me realize how very little I remember when it comes to how CKD affects your blood.  Soooo, I’m going right back to the very beginning. According to National Institute of Diabetes and Digestive and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-communication-programs/nkdep/a-z/kidney-disease-mean-for-me/Pages/default.aspx, this is how:

“CKD means that your kidneys are damaged and can’t filter blood like they should. This damage can cause wastes to build up in your body. It can also cause other problems that can harm your health.”

By the way, this is a reader friendly page with visuals that the organization freely shares. You’ve seen them in my books and blogs. There is no medicalese here, nor is there any paternalism.  I like their style.

The National Kidney Foundation at https://www.kidney.org/kidneydisease/aboutckd explains in more detail.

“If kidney disease gets worse, wastes can build to high levels in your blood and make you feel sick. You may develop complications like high blood pressure, anemia (low blood count), weak bones, poor nutritional health and nerve damage. Also, kidney disease increases your risk of having heart and blood vessel disease. These problems may happen slowly over a long period of time.”

Maybe seven years is that ‘long period of time’, not that I have heart or blood vessel disease that I know of. But I do have high blood pressure which may have contributed to the development of the CKD. Circular, isn’t it? High blood pressure may cause CKD, but CKD may also cause high blood pressure.  Or is it possible that the two together can cause ever spiraling high blood pressure and worsening CKD?

Book CoverI’m going to go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease here for some basic definitions that may be helpful in understanding today’s blog.

Albumin:   Water soluble protein in the blood.

Chronic Kidney Disease:  Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

Hypertension: A possible cause of CKD, 140/90 mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too. (New guidelines say these numbers are for CKD patients.)

Nephrons: The part of the kidney that actually purifies and filters the blood.

Let’s take a detour to see how sodium can affect high blood pressure which can affect so many other conditions.  This is a quote from Healthline.com at http://www.healthline.com/health/fast-food-effects-on-body which appeared The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

“Too much sodium helps to retain water, so it can cause general bloating and puffiness. Sodium can contribute to high blood pressure {Which, as we know, is the second leading cause of CKD} or enlarged heart muscle. If you have congestive heart failure, cirrhosis, or KIDNEY DISEASE {My bolding and capitalization in this paragraph.}, too much salt can contribute to a dangerous build-up of fluid. Excess sodium may also increase risk for kidney stones, KIDNEY DISEASE, and stomach cancer.

High cholesterol and high blood pressure are among the top risk factors for heart disease and stroke.”Part 2

Oh my! Sodium, high blood pressure, enlarged heart muscle, stroke, heart disease, dangerous fluid build-up. They all can be inter-related. And that’s the problem with CKD:  your blood is not being filtered as it should be. There’s waste buildup in your blood now.

It’s that same not well filtered blood that flows through your body possibly causing hearing problems, as was discussed in a previous blog.  It’s that same not well filtered blood that flows through your body possibly causing your high blood pressure. It’s that same not well filtered blood that flows through your body possibly causing “swelling in your anklesvomitingweakness, poor sleep, and shortness of breath.” (Thank you WebMD at http://www.webmd.com/a-to-z-guides/understanding-kidney-disease-basic-information for that last quote.)

I’m sorry to say this all makes sense.  All these conditions are inter-related and they may be caused by CKD, or high blood pressure which causes CKD, or both.

blood pressure 300dpi jpg

I see something I’ve ignored here. I have high blood pressure and I have CKD… and a lot of microalbumin in my urine.  This is new, and it’s a bit scary. Oh, all right, a lot scary.  I write about it so I have to research it and therefore, allay my fear by learning about it.

What did I learn about microalbumin, you ask? The MayoClinic at http://www.mayoclinic.org/tests-procedures/microalbumin/basics/definition/prc-20012767 says it in the simplest manner.

“A urine microalbumin test is a test to detect very small levels of a blood protein (albumin) in your urine. A microalbumin test is used to detect early signs of kidney damage in people who have a risk of kidney disease.Unhealthy%20Kidney

Healthy kidneys filter waste from your blood and keep the healthy components, such as proteins like albumin. Kidney damage can cause proteins to leak through your kidneys and leave your body in your urine. Albumin (al-BYOO-min) is one of the first proteins to leak when kidneys become damaged.”

At first, I laughed it off; I already know I have CKD. Until I saw the results for this test, but I’ve requested what we used to call a do-over when we were kids and my doctor saw the value in that.

Ready for some good news?

Both The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 have indexes now. I promised them before Christmas and Kwanzaa and I delivered. Sort of, that is.  Amazon came through right away; B&N.com will take another five weeks or so.Digital Cover Part 1

Happy, happy holidays to all of you.  I’ll see you once more before 2016. Talk about time flying!

Until next week,

Keep living your life!

I Can Hear The Blood Rushing in My Ears

July 4thHope you had a wonderful Independence Day weekend. Ours was filled with water walking thanks to the Vlasitys, Olsens, and Artecs who all offered their pools for Bear’s physical therapy, board games after we discovered our neighbors – Linda and Mike Olsen – played our favorite domino game, a movie (Train Your Dragon, Two… oh yes!), plus dinner out at Macaroni Grill, a restaurant where I actually have choices that fit in the renal diet. We even got to the only remaining bookstore on our side of The Valley of The Sun. Quiet, fun activities.

During that time, my blog was in the back of my mind. It’s always in the back of my mind. Which is why I can’t stop writing it, by the way. This weekend, I kept thinking about the subtle connection between hearing and Chronic Kidney Disease.

The topic came about in the usual way: I complained of hearing poorly and my ever vigilant primary care doctor, Dr. Zhao of Deer Valley Family Practice right around the Arizona style corner (three and a half miles), suggested I might want to have my hearing tested by an audiologist. This was right after I passed the Medicare Annual Wellness Visit hearing test with flying colors despite my complaints.

Off I went to Dr. Kristin Wells of North Valley Audiology… for the third time in five years. Her assessment was that my hearing was just fine. Go figure, but she did applaud me for telling her I had CKD (and sleep apnea, but that’s another story…uh, blog).test

Why did I do that you ask? Well, as I wrote on my March 15th, 2011, blog during National Kidney Month:

“Research shows that hearing loss is common in people with moderate chronic kidney disease. As published in the American Journal of Kidney Diseases and highlighted on the National Kidney Foundation web site, a team of Australian researchers found that older adults with moderate chronic kidney disease (CKD) have a higher prevalence of hearing loss than those of the same age without CKD.”

You can enter hearing in the topic search to the right of this blog read the rest of that blog.

earHow moderate CKD and hearing are connected is another matter, one that apparently isn’t as well documented. Here’s what I found at http://www.hear-it.org/More-than-half-with-Chronic-Kidney-Disease-have-hearing-loss – which has an online hearing test – and not most, but all of the other sites I searched. This comes from the same study I used in my 2011 blog. That study was completed in 2010… four years ago.

“University of Sydney, said:
The link between hearing loss and CKD can be explained by structural and functional similarities between tissues in the inner ear and in the kidney. Additionally, toxins that accumulate in kidney failure can damage nerves, including those in the inner ear. Another reason for this connection is that kidney disease and hearing loss share common risk factors, including diabetes, high blood pressure and advanced age.”cochlear tissue

I couldn’t visual this inner ear tissue, so I started looking for images. You can see them all over this page.

Suddenly it became clear. If toxins are – well – toxic to our bodies, that includes our ears. My old friend The Online Etymology Dictionary at http://www.etymonline.com/index.php?term=toxic tells us the word toxic is derived directly from Late Latin toxicus “poisoned.”

Now I got it. Moderate CKD could be poisoning our bodies with a buildup of toxins. Our ears and the nerves in them are part of our body. Damaged nerves may cause hearing loss. I’d just never thought of it that way before. Sometimes all it takes is that one last piece of the puzzle to fall in place.

Hmmm. High blood pressure is the second most common leading cause of CKD and it can also lead to hearing loss. Let’s take a look at that.

ear tissueAccording to WebMD at http://www.webmd.com/a-to-z-guides/hearing-loss-causes-symptoms-treatment “Certain illnesses, such as heart disease, high blood pressure, and diabetes, put ears at risk by interfering with the ears’ blood supply.” Of course!

I went right to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to figure out how. On page 97 (you know the drill: digital readers use the search function), blood pressure 300dpi jpgthere is a diagram from The National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health that demonstrates how high blood pressure is caused… and if you read on, you’ll read about the problems high blood pressure causes.

This is the sentence that clarified the issue for me (page 99): “Humans have 10 pints of blood that are pumped by the heart through the arteries to all the other parts of the bodies.” That would include the ears. Moderate CKD might mean that blood is tainted by the toxins our compromised kidneys could not rid us of.

I had been hoping for more recent research, but sometimes you just have to deal with what you get.

Talking about getting, Dr. Nick Held of ASU sent a long involved comment. Basically it is full of opportunities to study about Chronic Kidney Disease. While most of it is a bit too medical for me, you may be looking for just this opportunity, so here’s the address: http://www.nejm.org/toc/nejm/medical-journal. You’re looking for Vol. 371, No. 1. Many thanks, Nick, and thank you for the accolades, too.

Things are quiet here this summer. No word yet from either the radio show or the article in Medicare’s publication about when they’re going to happen. No word on SlowItDown either. I’ll bet people are going directly to DaVita.com for their Chronic Kidney Disease education. You are, aren’t you? Hey, get that CKD education any way you can.

The book lives! I do believe there may be another book about CKD fairly soon: The Book of Blogs. This blog was born when an Indian nephrologist contacted me to explain that he Book Coverthought What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was just what his new patients needed, but they were too poor to even pay bus fare to keep their appointments.

I was very new to social media, but figured if I wrote a blog, he translated it and then printed it, his patients who could keep their appointments could read it and bring it back to their villages with them for other CKD patients to read.

Now I’m looking at it the other way: I have more than a few readers who are not comfortable with anything electronic. They need a book in print. I’m seeing what I can do about that, folks.

Until next week,
Keep living your life!

What Did You Say?

In honor of National Kidney Month (not to be confused with World Kidney Day), I searched the web to see what new information I could find.  When I did find it, you could have heard a pin drop – or maybe not.  Now I understand why my children have been begging me to get my hearing tested.  The following appeared on Yahoo’s PRWEB on Monday, March 14, 2011. I took the online test mentioned in the article and, sure enough, I need to see (luckily not hear) an audiologist. Consider taking the online test yourself after you read this not very well known information about CKD patients.

People with Chronic Kidney Disease Should Have Their Hearing Checked: March is National Kidney Month

 

People with chronic kidney disease (CKD) should take the Across America Hearing Check Challenge—a free, quick, and confidential online hearing test at http://www.hearingcheck.org. The non-profit Better Hearing Institute (BHI) is offering the test as part of its effort to raise awareness of the link between chronic kidney disease and hearing loss. March is National Kidney Month. BHI’s online test will help people determine if they need a comprehensive hearing check by a hearing professional.

Research shows that hearing loss is common in people with moderate chronic kidney disease. As published in the American Journal of Kidney Diseases and highlighted on the National Kidney Foundation web site, a team of Australian researchers found that older adults with moderate chronic kidney disease (CKD) have a higher prevalence of hearing loss than those of the same age without CKD.

According to the National Kidney Foundation, an Australian research team assessed more than 2,900 individuals aged 50 and older, including 513 with moderate chronic kidney disease. Of those with CKD, more than 54 percent reported some level of hearing loss compared to only 28 percent of the rest of the group. Nearly 30 percent of the CKD participants showed severe hearing loss compared with only 10 percent of the non-CKD participants.

“Unaddressed hearing loss can have very significant consequences on a person’s life and greatly undermine quality of life,” said Sergei Kochkin, PhD, BHI’s executive director. “We need to alert people with chronic kidney disease of their potential for hearing loss as a result of their disease and encourage hearing screenings as part of their routine medical care to help optimize their quality of life.”

According to the National Kidney Foundation, 26 million American adults have CKD and millions of others are at increased risk. But early detection can help prevent the progression of kidney disease to kidney failure.

Referencing the Australian study, Dr. Kerry Willis, Senior Vice President of Scientific Activities at the National Kidney Foundation stated: “These findings could lead to a modification of the usual care of people with CKD. Earlier clinical hearing assessments and fitting of hearing aids in CKD patients can improve quality of life and lead to better management of underlying conditions which could, in turn, potentially preserve hearing function.”

About Hearing Loss
Approximately one in 10 Americans, or 34 million people, have some degree of hearing loss. Yet, fewer than 15 percent of physicians today ask patients if they have any hearing problems.

Numerous studies have linked untreated hearing loss to a wide range of physical and emotional conditions, including impaired memory and ability to learn new tasks, reduced alertness, increased risk to personal safety, irritability, negativism, anger, fatigue, tension, stress, depression, and diminished psychological and overall health.

Fortunately, the vast majority of people with hearing loss can be helped with hearing aids. And nine out of ten hearing aid users report improvements in their quality of life.

Founded in 1973, BHI conducts research and engages in hearing health education with the goal of helping people with hearing loss benefit from proper treatment. For more information on hearing loss, visit http://www.betterhearing.org. To take the Across America Hearing Check Challenge, visit http://www.hearingcheck.org.

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Fabia D’Arienzo
1-202-656-8846

It’s only Tuesday.  Let’s see if you can at least make an appointment with an audiologist before the end of the week should your online hearing test indicate you need to. If it doesn’t, I’m glad to hear it (That word, hear, is so much a part of our language).

Until then,

Keep living your life!

Published in: on March 15, 2011 at 10:48 am  Leave a Comment