National Kidney Month, 2019

Anyone remember LOL? It’s older internet shorthand for Laughing Out Loud. That’s what I’m doing right now. Why? Because, after all these years of blogging, I’ve just realized that I compose my opening paragraph as I’m waking up. Still in bed, mind you. Still half asleep. Isn’t the brain wonderful?

This is my half asleep composition for this morning: March is National Kidney Month. That’s not to be confused with March 14th, which is World Kidney Day. So, today, we address the nation. Next week, the world.

As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause at https://www.personalizedcause.com/health-awareness-cause-calendar/national-kidney-month has a succinct explanation for us. By the way, while I’m not endorsing them since the site is new to me, I should let you know they sell the green ribbons for National Kidney Month that you’ll probably be seeing hither and yon all month.

“National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffeing (sic) with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.” That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month at https://www.kidney.org/news/monthly/Focus_KidneyMonth.

Focus on the Kidneys During National Kidney Month in March

March is National Kidney Month and the NKF is urging all Americans to give their kidneys a second thought and a well-deserved checkup. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease; 1 in 3 Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure. There are more than 30 million Americans who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed. During National Kidney Month in March, and in honor of World Kidney Day on March 14, the NKF offers the following health activities to promote awareness of kidneys, risk factors and kidney disease:

  • Free Screenings: On World Kidney Day and throughout the Month of March, NKF is offering free screenings to those most at risk for kidney disease – anyone with diabetes, high blood pressure or a family history of kidney failure. Locations and information can be found on the calendar on our website.
  • ‘Are You at Risk’ Kidney Quiz: Early detection can make a difference in preventing kidney disease so it’s important to know if you’re at risk. Take the online kidney quiz!
  • Live Twitter Chat with Dr. Joseph Vassalotti: The National Kidney Foundation’s Chief Medical Officer, Dr. Joseph Vassalotti, will be hosting an interactive kidney Q&A on World Kidney Day, Thursday, March 14, from 12-2 pm ET. Ask your questions at www.twitter.com/nkf using the hash-tag #WorldKidneyDayNKF.”

Wow, so much going on. This is also the month of kidney walks, like the one my daughter Nima participated in on the East Coast in my honor, or the one for which I organized a team several years ago. Actually, it’s the month specifically for anything and everything that will raise awareness of kidney disease. I’ve mentioned that I contributed a chapter to the book 1in9, which is about kidney disease. You’re right. The book launch is this month, March 6th to be specific.

The American Kidney Fund at http://www.kidneyfund.org/take-the-pledge/ is also taking part in National Kidney Month. They have a form to fill out to take a pledge to fight kidney disease.  I signed up; you can, too, if you’d like to. I’m not comfortable with the word “fight,” but I’m not going to let that stop me from spreading awareness of the disease. I wanted to share this quote from the AKF with you, both as a CKD awareness advocate and a woman:

“‘Kidney disease is a silent killer that disproportionately affects women who are often the primary caregivers for loved ones with the disease, are more likely to become living donors but less likely to receive a transplant, and are at higher risk for CKD,’ said LaVarne A. Burton, president and chief executive officer of AKF. ‘Because women with kidney disease may also face other health issues, including infertility, pregnancy complications, bone disease and depression, AKF is using Kidney Month to let women know we are here to support them and to provide resources that will answer their questions and concerns.’”

The Renal Support Network at https://www.rsnhope.org/ is working even more emphatically to spread kidney disease awareness this month, too:

“March is National Kidney Month. This is a special time set aside to raise awareness about kidney health and activities. RSN invites members of the kidney community, our friends and our families to join in the conversation.”

This on top of their usual. For those that are not familiar with this group, the following statement is from their website.

“Since 1993 RSN has created and continues to produce a vast collection of information about kidney disease. Feel free to share our National Kidney Month page, a favorite story, KidneyTalk™ show or awareness image on social media using the hashtag #KidneyMonth and be sure to tag us @RSNhope.”

DaVita Kidney Care at https://www.davita.com/education/resources offers many resources (as the website’s title assures us) to help understand both CKD and dialysis. Some of their offerings are:

If you click through on the link offered above, each item will open on a new page.

As for me, I’ll blog my brains out until more and more people are aware of kidney disease. Same goes for the Instagram, Facebook,Twitter, Pinterest, and LinkedIn accounts. It’s all about kidney disease.

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!

 

 

Teachers Teach

Many of you have asked that I post the interview by The American Federation of Teachers. I aim to please, so here it is.

 Gail Rae-Garwood

From NYC teacher to international health advocate

Posted August 9, 2016 by Liza Frenette

Gail Rae-Garwood talks and writes all the time about slowing down — but she’s not referring to her lifestyle speed. She’s talking about putting the brakes on Chronic Kidney Disease.

When this retired high school English teacher and United Federation of Teachers member was diagnosed with CKD in 2008, she was shocked. A new doctor detected unhealthy levels for kidney functioning in routine blood and urine workups. She was sent to a nephrologist. “I didn’t know what it was and what it meant,” she said. “I was terrified and thought I had nowhere to turn.”

She began researching and finding ways to manage this inflammatory disease through a specialized, calibrated diet, exercise, stress reduction and proper sleep. Then she realized she wanted to help others steer toward solutions. Rae-Garwood writes a weekly blog, a daily post and has published four books designed for people with CKD. She answers questions from around the world. She has spoken at coffee shops, Kiwanis Clubs, independent bookstores and senior citizen centers. She’s been a guest blogger for the American Kidney Fund, which promotes prevention activities AKF logoand educational resources, and provides financial assistance for clinical research and for kidney patients who need help with dialysis and transplants.

While she is careful about getting enough sleep and eating right, Rae-Garwood does not let any waking time slip by unnoticed. She has been interviewed on Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Help. She has been interviewed for the Wall Street Journal’s Health Matters and The Center for Science in The Public Interest.

Her action is not all talk. She also puts on the sneakers: In addition to her regular walks for health, she hustled up a team for the National Kidney Foundation of Arizona Kidney Walk.

By now, even her heart is probably kidney shaped.

Rae-Garwood also organized several talks at the Salt River Pima-Maricopa Indian Community, not far from where she lives in Arizona.

Blacks, Hispanics, Native Americans and Asians are more prone to CKD, she said. “I wanted to bring awareness everywhere I could.”NKF-logo_Hori_OB

Education is vital because so many people are unaware they even have the disease. Rae-Garwood is one of many who did not have any symptoms. “Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before (CKD) was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.”

And CKD, left unchecked and untreated, can wreak havoc and death. According to the American Association of Kidney Patients, “The increase of kidney disease is now reaching epidemic proportions. The rates are even higher among racial and ethnic minorities. Chronic kidney disease can progress to end-stage renal disease and the need for dialysis or a kidney transplant.”

Rae-Garwood’s goal is to educate people and help them with their health. “You can slow down the progress of the decline of kidney function,” she said.

And she is the very living proof that people want to see.

kidneys5“I have been spending a lot of time on my health and I’m happy to say it’s been paying off. There are five stages. I’ve stayed at the middle one for nine years and even improved my health. That’s what this is about. People don’t know about CKD. They get diagnosed. They think they’re going to die. Everybody dies, but it doesn’t have to be of CKD. I am downright passionate about people knowing this,” she said.

After her first book was published, Rae-Garwood received an e-mail from a doctor in India. He said his patients were extremely poor and could not afford the book – yet the information she wrote about was so important to them.

“He asked how I could help. I thought: ‘I could write a blog!’” she said. Her efforts began by putting her book chapters on the blog, piece by piece. The doctor in India printed them and gave them to his patients. Newer blog posts have more up-to-date information, keeping patients informed.

Her informational blog has 106,000 readers from 107 different countries, she said, based on a report from WordPress. On her blog, Rae-Garwood answers questions from readers, lists books about CKD, reports on events, lists support groups, etc. She writes about things that have worked for her, such as using a stationary bike and stretching bands, and walking  — and cautions readers to seek advice from their doctor.

The year-round outdoor climate in Arizona helps Rae-Garwood stay active. While she loved living on Staten Island, she said she owned an old Victorian that she could not afford to fix up in retirement. With an arthritis condition, she also noticed that she was “becoming a bit of a shut-in in the winter.” So she moved to the southwest two months after retiring.

GFRRae-Garwood is not letting any of that sunshine go to waste. Since her 2008 diagnosis. she’s been driving on a steady road to wellness and spreading awareness like a modern day Johnny Appleseed. In her retirement from teaching, she has devoted much time to writing, speaking and teaching about how to thwart the disease. The skills she developed in 32 years as a teacher in Brooklyn, Staten Island, Queens and Manhattan have served her well in this new role as health advocate.

Her own four self-published books are “SlowItDownCKD 2015,” “The Book of Blogs, Moderate Stage Kidney Disease Part 1,” “The Book of Blogs, Moderate Stage Kidney Disease Part2” and “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.” The books are available online at Barnes and Noble and Amazon.

For more information on the disease and this active, 69-year-old retiree, check out https://gailraegarwood.wordpress.com.

I hope that this interview has been both enjoyable and informative. It’s how I live my life…

Until next week,

Keep living YOUR life!

World Kidney Day Is Over, But It’s Still National Kidney Month

Maybe it’s because I’m so enmeshed with anything early stage Chronic Kidney Disease, but I find myself constantly surprised by all the people who don’t know a thing about it – many of them suffering from high blood pressure (the second most prevalent cause of CKD) or diabetes (the first most prevalent cause of CKD).  I shouldn’t be.  I was one of them until I was diagnosed… and that’s why I’m so adamant about ‘getting the word out there,’ as I’ve come to call my passion.

One of my daughters, a blogger, asked me to guest blog about this issue last week.  While Nima was making her request to me, her sister – Abby – was surprising us all with a ticket for Nima to visit.  Abby and I live in Arizona; Nima lives in New York so visits are not all that frequent. I was thrilled!!!!

Unfortunatley, Abby ended up getting pretty sick, so Nima stayed with us for a few days.  And we talked, and talked, and talked.  I told her I was still angry that, because I have CKD, the chances of her (and her sister) developing it is higher.  She asked me questions about the diet and exercise.  We ended up sharing a meal each and every time we went to a restaurant and leaning more toward the food on the renal diet rather than food that isn’t. Right now, she’s walking my dog while I blog (*sigh* guess I’ll have to figure out my own exercise for today later).

Maybe today is the day to go back to basics about dealing with Chronic Kidney Disease in my blog.  Let’s start with the American Kidney Fund’s information:

Eat a diet low in salt and fat

Eating healthy can help prevent or control diabetes, high blood pressure and kidney disease.  A healthy diet has a balance of fruits, vegetables, whole grains, dairy products, lean meats and beans.  Even small changes like limiting salt (sodium) and fat, can make a big difference in your health.

Limit salt

  • Do not add salt to your food when cooking or eating.  Try cooking with fresh herbs, lemon juice or other spices.
  • Choose fresh or frozen vegetables instead of canned vegetables.  If you do use canned vegetables, rinse them before eating or cooking with them to remove extra salt.
  • Shop for items that say “reduced-sodium” or “low-sodium.”
  • Avoid processed foods like frozen dinners and lunch meats.
  • Limit fast food and salty snacks, like chips, pretzels and salted nuts.

Limit fat

  • Choose lean meats or fish.  Remove the skin and trim the fat off your meats before you cook them.
  • Bake, grill or broil your foods instead of frying them.
  • Shop for fat-free and low-fat dairy products, salad dressing and mayonnaise.
  • Try olive oil or canola oil instead of vegetable oil.
  • Choose egg whites or egg substitute rather than whole eggs.

Choosing healthy foods is a great start, but eating too much of healthy foods can also be a problem.  The other part of a healthy diet is portion control (watching how much you eat).  To help control your portions, you might:

  • Eat slowly and stop eating when you are not hungry anymore.  It takes about 20 minutes for your stomach to tell your brain that you are full.
  • Check nutrition facts to learn the true serving size of a food.  For example, a 20-ounce bottle of soda is really two and a half servings.
  • Do not eat directly from the bag or box.  Take out one serving and put the box or bag away.
  • Avoid eating when watching TV or driving.
  • Be mindful of your portions even when you do not have a measuring cup, spoon or scale.

 Be physically active

Exercise can help you stay healthy.  To get the most benefit, exercise for at least 30 minutes, 5 days of the week.  If that seems like too much, start out slow and work your way up.  Look for fun activities that you enjoy.  Try walking with a friend, dancing, swimming or playing a sport.  Adding just a little more activity to your routine can help.  Exercise can also help relieve stress, another common cause of high blood pressure.

 Keep a healthy weight

Keeping a healthy weight can help you manage your blood sugar, control your blood pressure, and lower your risk for kidney disease.  Being overweight puts you more at risk for diabetes and high blood pressure.  Talk to your doctor about how much you should weigh.  If you are overweight, losing just a few pounds can make a big difference.

 Control your cholesterol

Having high cholesterol, especially if you have diabetes, puts you more at risk for kidney disease, heart disease and stroke.  It can also cause diabetic kidney disease to get worse faster.

For most people, normal cholesterol levels are:

  • Total Cholesterol: Less than 200
  • HDL (“good” cholesterol): More than 40
  • LDL (“bad” cholesterol): Less than 100

Your triglycerides are also important.  People with high triglycerides are more at risk for kidney disease, heart disease and stroke.  For most people, a healthy triglyceride level is less than 150.

If your total cholesterol, LDL or triglycerides are high, or if your HDL is low, talk to your doctor.  Your doctor may suggest exercise, diet changes or medicines to help you get to a healthy cholesterol level.

 Take medicines as directed

To help protect your kidneys, take medicines as directed.

Some medicines may help you manage conditions that can damage your kidneys, like diabetes or high blood pressure.  Ask your doctor how to take any medicines he or she prescribes.  Make sure to take the medicines just how your doctor tells you.  This may mean taking some medicines, like blood pressure medicines, even when you feel fine.   Other medicines can harm your kidneys if you take them too much.  For example, even over-the-counter pain medicines can damage your kidneys over time.  Follow the label directions for any medicines you take.  Share with your doctor a list of all of your medicines (even over-the-counter medicines and vitamins) to help make sure that you are not taking anything that may harm your kidneys.

 Limit alcohol

Drinking alcohol in large amounts can cause your blood pressure to rise.  Limiting how much alcohol you drink can help you keep a healthy blood pressure.  Have no more than two drinks per day if you’re a man and no more than one drink per day if you’re a woman.

 Avoid tobacco

Using tobacco (smoking or chewing) puts you more at risk for high blood pressure, kidney disease and many other health problems.  If you already have kidney disease, using tobacco can make it get worse faster.

If you use tobacco, quitting can help lower your chances of getting kidney disease or help slow the disease down if you already have it.

You can find this information and more at: http://www.kidneyfund.org

This blog has a p.s. after the farewell.  Be sure to read it for a another really delightful surprise and until next week,

Keep living your life!

Nima is also my computer guru, so she showed me quite a bit while she’s here – including how to see the number of people ‘Talking About’  the Facebook page at Facebook.com/WhatHowEarlyCKD (which includes this blog).  Sit down before you read these numbers.

  • Countries
    12,968,464
    United States of America
    1,802,022
    United Kingdom
    1,324,900
    India
    997,242
    Canada
    735,784
    Australia
    718,074
    Philippines
    278,090
    Malaysia
    265,313
    Pakistan
    146,796
    Italy
    139,240
    Ireland
    137,382
    Turkey
    137,199
    Tunisia
    133,749
    Germany
    132,983
    United Arab Emirates
    131,905
    New Zealand
    122,384
    Egypt
    106,798
    Mexico
    104,727
    Saudi Arabia
    102,007
    Singapore
    90,359
    South Africa
  • Languages
    17,461,481
    English (US)
    3,197,319
    English (UK)
    248,597
    French (France)
    236,736
    Spanish
    132,372
    Turkish
    127,798
    Italian
    104,827
    German
    74,151
    Spanish (Spain)
    65,797
    Arabic
    61,022
    English (Pirate)
    52,742
    Indonesian
    51,763
    Portuguese (Brazil)
    43,362
    Thai
    31,794
    Dutch
    27,905
    Greek
    24,778
    Hungarian
    24,629
    Portuguese (Portugal)
    24,559
    Korean
    20,136
    Polish
    19,728
    Simplified Chinese (China)