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!

 

 

Eating Makes Me Hungry

I couldn’t figure it out. I had my renal diet down pat (That only took ten years, she thought snidely.) When the foods I’m sensitive to had to be removed from that diet, I worked the new-reduced-possibilities-for-food-choices diet out pretty quickly, too. But then I noticed that I was hungry pretty much only after I ate.

I’d prefer to eat only if I’m hungry, but some of my medications require food first. Okay, so I knew I had to eat at least twice a day and graze several times during the day to keep my blood glucose level. I thought I took care of that by eating a small breakfast, lunch as my main meal when I got hungry, and a much smaller, almost snack type meal for dinner.

So why did eating make me hungry? Was I not taking enough food in? Nope. I counted calories to check and was not much under my allotted 1,200 per day. So what was it?

Women’s Health at https://www.womenshealthmag.com/food/g19920742/foods-that-make-you-hungrier/ named the following seven foods that make you hungrier:

  1. Whole wheat bread
  2. Fruit juices
  3. Egg whites
  4. Green smoothies
  5. Non-fact dairy
  6. Pickles
  7. Whole wheat crackers

Hmmm, between the renal diet and my food sensitivities I don’t eat any of these. Wait, I do eat whole eggs which contain egg whites, but I think Dr. Caspero meant only the whites for the purposes of this list.

Of course, I wanted to know why these foods make you hungrier. This quote is from the same article.

“For the most part, fat, fiber, and protein help with satiation,” says Alex Caspero, R.D. “So foods without those components will likely leave you searching for your next meal in no time.”

Reminder: R.D. means registered dietician.

I don’t eat whole wheat anything because I have sensitivity to it, but doesn’t it have fiber? That’s a yes and no answer. It does have fiber, but is more processed than regular flour which means less fiber. Fiber helps to fill you up. Side bar here:  Did you know that flour of any kind has wheat in it since it’s made from one or more of the three parts of the grain? That’s mean no bread for me.

Nope, Dr. Caspero didn’t answer my question as fully as I wanted it to be answered. Back to the drawing board, boys and girls.

Wait a minute. This from the BBC at http://www.bbc.co.uk/guides/zt22mp3 looks like it’s getting close to answering my question.

“Different types of food we eat affect the brain in various ways. For example, fatty foods trick the brain into believing that you have eaten fewer calories than you actually have, causing you to overeat. This is because fatty foods such as butter and fried foods contain a lot of densely packed energy.

However, other foods give a lasting sense of fullness. Fibre triggers the release of gut hormones that make you feel full. A low fibre diet though, with little or no wholemeal produce or fruit and vegetables, may leave you open to feelings of hunger.

Foods with a low GI (glycaemic index) such as nuts, vegetables and beans release energy more slowly than high GI food such as white bread and sugar. Eating more low GI foods will suppress your hunger by increasing levels of gut hormones that help you feel fuller for longer.”

Foods with a low GI, huh? This brings me back to the lessons from the Diabetes Nutritionist my family doctor sent me to when she discovered I was (and still am four years later) pre-diabetic. Okay, I can take a hint. What are some of these low GI foods?

The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/what-can-i-eat/understanding-carbohydrates/glycemic-index-and-diabetes.html  was able to help us out here:

“Low GI Foods (55 or less)

  • 100% stone-ground whole wheat or pumpernickel bread
  • Oatmeal (rolled or steel-cut), oat bran, muesli
  • Pasta, converted rice, barley, bulgar
  • Sweet potato, corn, yam, lima/butter beans, peas, legumes and lentils
  • Most fruits, non-starchy vegetables and carrots

Medium GI (56-69)

  • Whole wheat, rye and pita bread
  • Quick oats
  • Brown, wild or basmati rice, couscous

High GI (70 or more)

  • White bread or bagel
  • Corn flakes, puffed rice, bran flakes, instant oatmeal
  • Shortgrain white rice, rice pasta, macaroni and cheese from mix
  • Russet potato, pumpkin
  • Pretzels, rice cakes, popcorn, saltine crackers
  • melons and pineapple”

According the renal diet I follow, the Northern Arizona Council on Renal Nutrition Diet, I could eat all of these foods. According to my food sensitivities, I could only eat oatmeal, some fruits, and vegetables. Maybe that’s why eating makes me hungry.

Take a look at this. Redbook (and to think I smirked at my mom for reading this magazine when I was a teenager) at https://www.redbookmag.com/body/healthy-eating/g2819/foods-that-make-you-hungry/?slide=1 explains about fruit making you feel hungrier:

“’Fruit juice may already be on your no-go list, but if you’re eating more than one serving of the whole variety (i.e. one banana or one cup of berries), you may want to scale back. It may have nutritional benefits, but fruit is not going to help suppress your appetite,’ says Perlmutter. ‘It contains both fructose and glucose, which won’t signal insulin, causing your appetite to rage on.’”

Perlmutter is David Perlmutter, MD, a board-certified neurologist and author of Brain Maker.

Got it: More fiber, less sugar. Now the only question is can I get myself to adhere to that… and can you if you choose to stop being hungrier after eating than you were before.

Talking about magazines, Arizona Health and Living at https://issuu.com/arizonahealthandliving/docs/arizona_health_and_living_magazine__9a2d374f4dffc2 is helping me spread awareness of Chronic Kidney Disease. This is in their June 2018 issue.

 

Guess what I found when I was preparing my non-CKD book for last Thursday night’s reading at our local The Dog Eared Pages Used Book Store. You’re right. It’s a copy of the newly minted (um, printed) SlowItDownCKD 2017. Would you like it? All that I require is your address and that you haven’t received a free book from me before.

Random thought: I cannot believe I just chose a Father’s Day gift for my son-in-law’s first Father’s Day. Add my youngest’s upcoming nuptials and this is a very happy world I live in. Here’s hoping yours is a happy one, too.

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!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Black and Blue is Back

I looked in the mirror and what did I see? Black and blue under my eyes staring back at me… and then I realized I’d been seeing them for ages. Hmmm, what could be causing them?

I researched and researched and researched and didn’t really find any answers that relate to me, but did find some that do relate to Chronic Kidney Disease. The biggie was anemia. Let’s go all the way back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition:

“Anemia: A blood disease in which the number of healthy red blood cells decreases”

Need some basics? In SlowItDownCKD 2011, it was explained that the red blood cells are the ones that contain the hemoglobin which carries oxygen to your cells. There’s a bit more about hemoglobin in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. There we learned that it’s a protein and that it is responsible for the red color of your blood.

Well, what’s this got to do with CKD? This explanation from The National Kidney and Urologic Diseases Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf which appeared in SlowItDownCKD 2015 will explain:

“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.”

A little more about erythropoietin from the Lung Institute at https://lunginstitute.com/blog/oxygen-kidneys/:

Red Blood Cell Regulation: When the kidneys do not receive enough oxygen, they send out a distress signal in the form of erythropoietin, a hormone that stimulates bone marrow to produce more oxygen-carrying red blood cells.”

Uh-oh, what happens if we have fewer red blood cells – or anemia? I popped over to SlowItDownCKD 2016 to find the answer.

“If you have fewer red blood cells, you are carrying less oxygen to your vital organs… which are the following according to livescience at http://www.livescience.com/37009-human-body.html

‘The human brain….The human heart…. The job of the kidneys is to remove waste and extra fluid from the blood. The kidneys take urea out of the blood and combine it with water and other substances to make urine. The liver….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.’

Okay, so the lungs are responsible for gathering oxygen from the air (for one thing) and healthy kidneys produce red blood cells to carry oxygen to your vital organs (again, for one thing). CKD reduces the oxygen you have since it reduces your red blood cell production….”

Let’s get back to the seeming black and blue under our eyes. While Dr. Mercola is not necessarily my medical hero, I did find an interesting explanation on his website at https://articles.mercola.com/what-causes-dark-circles-under-eyes.aspx:

“Some of the causes believed to contribute to hyperpigmentation around the periorbital area are temporary and resolve after the irritant has been removed. Possible temporary and permanent triggers for periorbital hyperpigmentation include….”

Sun exposure Genetic pigmentation Dermal melanocytosis
Allergic dermatitis Contact dermatitis Edema (swelling)
Drugs Aging Hormones

According to the Merriam-Webster Medical Dictionary, periorbital means “of, relating to, occurring in, or being the tissues surrounding or lining the orbit of the eye, “ and hyperpigmentation is “the production of excess melanin causing dark spots on the skin.” This is not exactly what we were looking for, but notice the last item in the third column: hormones. Erythropoietin is a hormone.

Maybe it has to do with the reduction of red blood cells which means less hemoglobin which means less red color. To my way of thinking, that means your veins would show up as blue. I’m conflicted here. I can’t decide if that’s just plain silly since I’ve never seen a red vein through my skin or if this might be the germ of a thought to be expanded upon.

EyeHealthWeb at https://www.eyehealthweb.com/dark-circles-under-eyes/  lists many possible causes of these black and blue or dark rings under our eyes.

  • Heredity. Dark circles under the eyes can appear in childhood, and are often an inherited trait. Some children will outgrow them, but others will not.
  • Allergies. Nasal congestion can dilate the blood vessels that drain from the area around your eyes, causing them to darken.
  • Sleep deprivation is the most common cause, and the easiest to prevent, but …
  • Oversleeping can also cause dark eye circles.
  • Eczema
  • Stress
  • As we get older, our skin becomes thinner.
  • Iron deficiency can prevent the blood from carrying sufficient oxygen to eye tissues.
  • Minor trauma that causes the appearance of a black eye 

Additional causes for dark circles under your eyes:

  • Crying
  • Lifestyle. Excessive smoking or drinking can contribute to under-eye circles. Also, people who drink too much coffee or who use cocaine or amphetamines may have difficulty getting enough sleep.
  • Fluid retention, as may occur with pregnancy or weight gain.
  • Skin pigmentation abnormalities. The skin around the eyes is thinner, which is why your blood vessels are more readily visible through it.
  • Excessive exposure to the sun. Sun exposure encourages your body to produce more melanin.
  • Age. As we get older, we lose some of the fat and collagen surrounding our eyes. This loss, combined with the thinning of our skin, magnifies the appearance of dark eye circles.
  • Mononucleosis can cause the eyes to appear puffy and swollen. This is due partly to the fatigue that people feel when they are suffering from it, and partly because this illness causes a yellowing of the eyes and the skin around them (this is called jaundice).
  • Periorbital cellulitis. This is a bacterial infection of the eyelid or eyelids. If it is promptly treated with antibiotics, however, it is nothing to worry about.
  • Excess salt in the diet causes fluid retention throughout your body—including underneath your eyes.

Gulp! Iron deficiency (which may be a kind of anemia), excessive smoking or drinking, certain drugs, excess salt. Sound familiar? These are some of the things we’re told to avoid as CKD patients.

Until next week,

Keep living your life!

The Elusive Diet Plan

I find it amazing, absolutely amazing, how limited my diet has become in the last decade. It’s not just the renal diet, or even the renal diet with the prediabetes way of eating added. I had some testing done and found ‘food sensitivities’ as well as out and out allergies that needed attention. And now? It turns out I have Irritable Bowel Syndrome or IBS, which requires I change my eating habits yet again.

When I was first diagnosed with Chronic Kidney Disease, I was introduced to the Northern Arizona Council on Renal Nutrition Diet. I reproduced that in SlowItDownCKD 2015 and here it is again…still crooked. (Can I blame that on macular degeneration? No? Oh well.) Unfortunately for me, I can’t just “limit,” which is what the second column on each page suggests, so I have to avoid. One exception leads to a second and then a third, so to me, “limit” means Do.not.eat.

I understood I had to limit my phosphorous, potassium, protein, and sodium to preserve my kidney function and was scared enough by my diagnosis to follow this diet religiously, recording the amounts I ate in a little notebook. Nowadays, there are apps that will help you track these electrolytes. I listed a few in SlowItDownCKD 2016, but that list surely needs updating a full year or more later. Perhaps I should write about that next week.

Back to the renal diet. This meant changes for me, lots of them. My staple – bread – would now be limited, as would potatoes. I am so the grandchild of my grandfather, a Russian miller. I am also lactose intolerant so those limitations were not a problem since I didn’t eat dairy in the first place. The measuring is what I had to get used to in all categories… and I did, to the point where I can eye measure just about all the foods.

Then came the pre-diabetes dietary changes. My A1C was continually elevated. I didn’t want to develop diabetes, so I knew this test that measures blood glucose had to start registering lower readings. Hmmm, I was able to adhere to the renal diet. I’ll just modify that with these new changes, I thought.

Writing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2  helped me  understand how to do this:

“Ahh! So all carbohydrates, whether from starches or sugars break down into sugar glucose. This is starting to sound familiar. When I brought my pre-diabetes to the nutritionist at my nephrologist’s office, she gave me quite a bit of information and a handout from DCE, a dietetic practice group of the American Dietetic Association. Did you know that starchy vegetables, fruits, juices and milk also contain carbohydrates? It hadn’t occurred to me…. The Mayo Clinic has a good diet plan for diabetes, but it won’t work for Chronic Kidney Disease patients as it is. For example, whole wheat flour raises your blood glucose less than white flour, but has too much phosphorous for us, so we are warned to avoid it. Yoghurt, cheese, beans, and nuts are no-nos on my renal diet, but are often recommended in diabetes diets.”

My diet became noticeably more limited. But I was still willing to work on it. I remembered that CKD can cause diabetes, just as diabetes can cause CKD. I had enough trouble without diabetes, thank you very much.

Boom! Enter food allergies and sensitivities. Lettuce? I was living on salads at this point, but no more unless I could get a spinach salad. I wouldn’t necessarily miss lima beans, brazil nuts, buckwheat, celery, cherries, corn, cucumbers, lamb (ugh), oranges, red raspberries, and watermelon. Whine: some of my staples were on the list, too: rice, shellfish, vanilla, and yeast. Oh yeah, the little bit of mustard I cheatingly ate every once in a while was on the allergy list, too. *sigh*

It took quite a bit of telling myself I could do this and referring to this NEW list constantly to get my now three purpose diet under control. It was especially hard during sad times in my life.

As happens (thank goodness), the sad times with their emotional eating passed and I could get back to doing what my body needed. So why was I feeling so unwell? Was it a UTI? An ulcer? Something worse?

Welcome to eating modification number four. It’s Irritated Bowel Syndrome… and stress can be the source. The stress was caused by sadness in my case: my brother’s death, a bad outcome for testing on another family member, a third one’s hospitalization, a friend’s death, another’s illness. Now that my sad times were ended, at least temporarily, I had to deal with the aftermath.

While the disease is self-explanatory and the causes apparent, I still needed to know how to treat it. The MayoClinic at https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/diagnosis-treatment/drc-20360064 was helpful, but also informed me that each person with IBS may need different treatments and that there were different kinds of IBS and different tests for each kind. This is the information I found most helpful, although two more of my staples – broccoli and cauliflower – are no longer available to me.

“Your doctor might suggest that you eliminate from your diet:

• High-gas foods. If you experience bloating or gas, you might avoid items such as carbonated and alcoholic beverages, caffeine, raw fruit, and certain vegetables, such as cabbage, broccoli and cauliflower.
• Gluten. Research shows that some people with IBS report improvement in diarrhea symptoms if they stop eating gluten (wheat, barley and rye) even if they don’t have celiac disease.
• FODMAPs. Some people are sensitive to certain carbohydrates such as fructose, fructans, lactose and others, known as FODMAPs — fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs are found in certain grains, vegetables, fruits and dairy products. Your IBS symptoms might ease if you follow a strict low-FODMAP diet and then reintroduce foods one at a time.”

I’m laughing right now. This could not get more complicated. Uh, maybe I shouldn’t say that. Don’t want to draw attention from the diet gods, do I? At any rate, I see this as a challenge. Until I get tired, that is. Then it’s a formidable task.

Until next week,
Keep living your life!

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 the Long Promised Sulfa Blog!

Since I mentioned sulfa drugs in a blog a few weeks ago, I’ve been asked some questions, including one wanting to know if these drugs could have caused a particular reader’s CKD.  Although I used the British spelling, I also wrote about my experience with sulfa drugs in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (page 90):

I knew I wasn’t feeling well at all, so I called my primary care physician for an appointment.  Her medical assistant  [M.A.] told me my doctor was out of town for a Book Coverweek and to go to the urgent care center near my home since, as a CKD patient, I should not wait.  When I told the receptionist at the urgent care center that I had CKD, she sent me to the emergency room at the local hospital in case I needed blood tests or scans for which the urgent care center was unequipped.  The hospital did run a scan and blood tests.  This way, they were able to see if I had an infection, blockage or some imbalance that might not only make me feel sick but worsen the CKD.

I already knew I had a higher than usual white blood cell count from my previous fasting blood test for the nephrologist about a month before the emergency room visit.  He’d felt it was not significantly high enough to indicate an infection but was, rather, a function of a woman’s anatomy.  Women have shorter internal access to the bladder, as opposed to those of men.  Looked like my nephrologist might have misjudged.

However, he quickly picked up that the medication prescribed by the emergency room physicians, despite my having reiterated several times that I have CKD, was a sulfur based drug.  He quickly made a substitution, saving possible further damage to my kidneys.  The hospital insisted I only had Stage 2, so this was a safe drug for me.  I was nervous about this as soon as they became defensive about prescribing this medication.  You need to stick to your guns about being taken seriously when it comes to CKD.

All right, let’s go back to basics, first.  The Medical Dictionary at http://medicaldictionary.thefreedictionary.com/sulfa+drug defines sulfur drug as

“Any sulfur-based antibiotic, in particular sulfonamides.”

sulfaGreat. Now we just need to know what sulfonamides are.  The same dictionary tells us these are

“medicines that prevent the growth of bacteria in the body”

and that they are frequently used with urinary tract infections. Yet, there’s also a warning that people with kidney disease should be sure to warn their doctors about their kidney disease should one of these drugs be prescribed.

Well, why do you need to avoid such medications with CKD? As you already know, compromised kidneys don’t do the job they were meant to do as well as they did before we had CKD when it comes to eliminating drugs from our bodies.  The kidneys are the organs that clear this particular drug from the body, not the liver (which is another organ that can clear drugs from your body). That means the drug may build up… and cause problems.

Here’s one of those problems from MedicineNet.com at http://www.medicinenet.com/sulfonamides-oral/article.htm#what_are_the_side_effects_of_sulfonamides,

“Other rare side effects include liver damage, low white blood cell count (leucopenia), low platelet count (thrombocytopenia), and anemia. Formation of urinary crystals which may damage the kidney and may cause blood in the urine. Adequate hydration is needed to prevent the formation of urinary crystals.”

We are already prone to anemia since we’re not producing as many red blood cells as we could (another job our kidneys have). Sure, adequate hydration may prevent these crystals, but just how much is adequate.  After all, as CKD patients, we do have fluid restrictions.

As for actually causing kidney damage, yes, sulfa drugs can do that. As The National Kidney Foundation phrases it at http://www.kidney.org/atoz/content/kidneysnottowork.cfm:NKF-logo_Hori_OB

“Other things that can damage the kidneys include kidney stones, urinary tract infections, and medications or drugs.”

 An allergic reaction to sulfa drugs can also cause kidney damage.  Allergies.About.Com at http://allergies.about.com/od/medicationallergies/a/sulfa.htm reports:

“People with sulfa allergy may also develop a type of hepatitis, and kidney failure, as a result of sulfa medications.”

However, they are careful to point out that this is an uncommon reaction, occurring in less than 3% of users.

The antibiotics Bactrim and Septra are two of the most common sulfa drugs prescribed today.  Most often, they’ll be prescribed for a urinary tract or bladder infection.  What makes it harder to pinpoint which drugs are sulfa drugs is that they don’t always have ‘sul’ in their name.

That’s also what makes it so important for you to impress upon your physician that you

the medical alert plate1. do have CKD and

2. will not be taking any sulfa drugs

Wearing a medical alert bracelet might help you remember to be downright insistent that you will NOT be taking any sulfa drugs.

The emergency room doctor did try to speak with my nephrologist before prescribing the drug for me, but couldn’t get through… a situation we’re all familiar with.  He was not a specialist and made a judgment call that sulfa drugs would be all right for me.

Yet, when I finally got a response to my own calls to the nephrologist, he was horrified.  This guy was not an emotional man so this really put me into a panic, especially since CKD was so new to me and I didn’t really know the rules yet.

Some blogs just flow and some are hard to write.  This was one of the hard ones.  I spent more time trying to tease information from the internet and my source books than writing.  I gather this is neither a popular topic nor one that is usually visited.  That makes me even more hopeful that I’ve answered your questions about CKD and sulfa drugs.NYC

I left NY in 2002, but we’re going back for a visit soon.  Nima, my NY daughter, will be taking me to High Line and The Urban Museum.  Are there any other new places you think we should visit?  While I lived there, the city was our playground… but it’s been a dozen years.

Until next week,

Keep living your life!

The Less Than Sexy Sinuses

photoHappy birthday TODAY to my first born, Ms. Nima Beckie, whose name means (in Tibetan)  the sun up in the sky.  You were, and always will be, my miracle. I was never quite sure I would be pregnant and give birth in this life until there was you.  Thank you, my love.QPJ8IQXD2omxIGstmJVegwlJJ4zLcZLsR0skZQQxogg

This weekend was also the celebration of our first month of married life and I spent it in bed, but not the way you might think.  I have a whopping sinus infection: bacterial, non-contagious infection.  First of all, no one (and I mean no one) will believe me that it is non-contagious.

I wasn’t even sure that I believed it, so I researched it – of course. Viral commonly means an airborne virus which doesn’t respond to drugs since it needs a host to live in , and so, is already  inside our cells by the time we become ill. One way we spread this type of infection is by sneezing and coughing in public.

Bacteria, on the other hand, do respond to drugs like the 500 mg. of ciprofloxacin I’m taking twice a day for ten days. (I ran this prescription from my primary care doctor by both the pharmacist and the nephrologist to make certain the drug wouldn’t harm my kidneys… and I trust my primary care doctor!)  Bacteria need no host and are cells in their own right.

Now, can I please leave the house?  Or will you at least visit me?  Actually, once I could crawl out of bed, I found myself busily updating and vetting another book I’m working on with pretty good results.  I also found things in the house I didn’t even know were missing.  Not bad for someone who hates to be down and out for the count. I’m not so good at being a patient.

Sinuses are the area of the body that give Bear and his family trouble, not me or mine.  I like trying new things, but this is not exactly what I had in mind.  The obvious question is, “How did I suddenly develop an infection in this part of the body of all places?”.

According to MedlinePlus at http://www.nlm.nih.gov/medlineplus/sinusitis.html,

“Sinusitis can be acute, lasting for less than four weeks, or chronic, lasting much longer. Acute sinusitis often starts as a cold, which then turns into a bacterial infection. Allergies, pollutants, nasal problems and certain diseases can also cause sinusitis.”

Well, I have allergies.  And sinusitis just means an inflammation of the sinuses – which is what an infection is.

But what, if anything, does this have to do with Chronic Kidney Disease?  You’ve got to remember that your immune system is already compromised.  Your kidneys aren’t working at 100% (see your GFR).  Your medications have to be monitored and sometimes modified.  If your body is not releasing the meds at full capacity via the kidneys that aren’t working at full capacity, you may need to take less of them, lower the strength, or lengthen the time between doses.

sinusesBack to the sinuses.  I knew where they were because I could feel them when I first realized I was ill.  I’m still not that quick to realize when I’m ill and was at my primary care doctor’s office for the required annual Medicare Wellness visit (How’s that for irony?) when she quickly changed it to a non-Wellness visit and asked me to schedule another Wellness visit.

The Mayo Clinic has this to say about acute sinusitis:

“Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.”

You can read more at: http://www.mayoclinic.com/health/acute-sinusitis/DS00170.

Before we get any more detailed here, a few reminders (taken from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary):

Acute  – extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic  – medication used to treat infection.

Chronic  –  Long term, the opposite of acute.

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

GFR – Glomerular filtration rate which determines both the stage of kidney disease and how well the kidneys are functioning.

Medicare – U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.

Nephrologist – renal or kidney and hypertension specialist.

Hmmm, I hadn’t realized how often I use technical terms which have become part of my personal vocabulary.  I’ll make a determined effort to be aware of that in the future.

I intend to have the acute kind of sinus infection.  I can’t see making this a lifelong practice, so I’ll try to avoid it.  I’m not quite sure how just yet.  Here are some suggestions I found at: http://www.essortment.com/prevent-sinus-infection-62926.html, which calls itself “your source for knowledge.”  I am not familiar with the site, although I did like that they differentiate between viral and bacterial sinusitis.

“Be sure to blow your nose frequently to prevent a mucous buildup. Apply a warm, but not hot, washcloth or compress to your face for five or ten minutes at a time, perhaps twice a day, to help loosen stuffy passages. Very warm showers or baths likewise can help to release tight muscles and open the sinuses to let them flow. Enjoy hot tea on a regular basis. Filled with flavenoids and antioxidants that can track down and kill bacteria, tea’s steam can open up and loosen your sinus passages to prevent problems from developing.”

sinus infectionThis is the simplest and most direct picture of infected sinuses I could find.  I felt as if I had swollen glands, could barely talk, could not stop blowing my nose, and (the worst part for a CKD patient who avoids NSAIDS) had a headache that stopped me cold.

Not quite half way into the antibiotic regime, I’m ready to go conquer the world again… or at least work on getting CKD information on the reservations, but something tells me to hold off another day or so.  Oh, right, it’s Bear.  He keeps saying it’s a better idea to deal with this now than keep having to deal with it in the future.  I married such a smartie!

Until next week,

Keep living your life.

Good Bye To 2012 And Its Obesity

Today is the last day of 2012.  That means you can start your new year’s resolutions tomorrow.  When you’re done laughing, think about it.  We new-years-eve-celebrations-live-streammake resolutions intending to keep them – at least I do – but something happens right about March something or other.  We tend to forget what they are.

We could look at it another way.  Pollyanna over here likes this way better.  What has become part of your life as a former new year’s resolution?  For me, it’s the renal diet and exercise.  I actually feel bad when I can’t exercise now.

There’s hope for me in the form of a possible cortisone injection to lubricate that hip that has eroded so much that it is bone on bone. I know you were really worried about that [she wrote tongue in cheek].

Sometimes we need motivation to even think of resolutions.  Jody Charnow provided that for me in the Dec. 26th issue of Renal and Urology News:

 

Overweight, Obesity Raise Kidney Disease Risk

A large study conducted in Thailand corroborates previous findings showing that overweight and obesity are associated with an increased likelihood of chronic kidney disease (CKD).

Subjects with CKD had a significantly higher mean BMI than those without CKD (25.36 vs. 24.04), as well as a significantly higher prevalence of abdominal obesity (35.7% vs. 25.3%). The investigators defined abdominal obesity as a waist circumference of 90 cm (That’s 35 7/16 inches for the math challenged like me) or greater for men and greater than 80 cm (This one is about 31 and a half inches) for women.

You can read the rest of the article at http://www.renalandurologynews.com/overweight-obesity-raise-kidney-disease-risk/article/273848/#

IMAG0093My poor dog, Bella, keeps waiting for me to walk with her.  Can’t be done until the hip is taken care of.  Believe me, I tried.  But it’s not just Bella’s disappointment, it’s mine too.  I saw the pictures from Christmas Eve.  Not good, boys and girls.  How am I going to get my BMI under control without exercise?

Just in case you don’t remember, BMI means Body Mass Index or a way of measuring the fat content of your body based on your height and weight.  If you have the fortitude, you can make use of the BMI calculator at http://nhlbisupport.com/bmi/  I just did and I can tell you this is not for the faint of heart. I was a thinner young woman.  I can even prove it!  early headshots (Pardon the cigarette pix.  This was a long, long time ago.) My goal is to lose weight and be healthier.  This picture is another motivation (thank you for finding it, Nima), even though I realize my thinner 65 year old body is not going to look anything like my thinner 25 year old body.

So why all the whining about not being able to exercise, you ask.  Read that article excerpt again.  I already have stage 3 Chronic Kidney Disease.  How much worse do you think a lack of exercise – which leads to weight gain – is going to make my ckd?  Technically (I just had to qualify that), I already am obese.  I’m not that vain, but I want to stay at stage 3 for the rest of my life and avoid dialysis completely.  This is not the way to do it.

Let’s try this another way – for those of you who can walk – untreated hypertension (high blood pressure) may also be one of the causes of ckd.  According to http://www.nydailynews.com/life-style/health/easy-steps-reduce-blood-pressure-article-1.1226714, exercise can lower your blood pressure.  We already know that obesity is another possible cause of ckd.  Here’s the good part: while you’re walking to lower your blood pressure, you’re also exercising which means you’re losing weight if you’re consistent enough. Wow!  Two for one here!

I found surprising information in that article.  Who knew that fructose raises your blood pressure?  The only time I’d heard it mentioned as a medical deficit is at the immunologist’s. According to http://www.immunologist.com, an immunologist is, “A specialist concentrating on allergic diseases and those disease processes that involve the immune system.”  She had warned me that fructose should be avoided if you have allergies.

Potassium may also be a key in lowering your blood pressure.  I’ve been draining my canned fruit and only occasionally having a fresh (oh, all right, HALF a fresh) banana to control my potassium intake.  Guess what.  My blood pressure has gone up.  Maybe I shouldn’t be that surprised.

Oh no! The article also suggests losing weight.  Looks like it always comes back to the same thing.  A thinner body is a healthier body as long as we don’t go past thinner to obscenely thin.

Book CoverAh, I forgot to mention other new year’s resolutions that have become part of my life.  I blog about ckd every week.  This started out as a way to publicize What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (Amazon.com and B&N.com – print and digital), but soon took on a life of its own. Another new year’s resolution that has become a way of life is posting some ckd related news on the facebook page for the book (https://www.facebook.com/WhatHowearlyCKD).  Say, that’s not bad for new year’s resolutions.

You know how some people announce the addition of grand-children?  I do believe we’re going to be announcing our new grand-animals for quite a while before we get to grand-children. Here’s the newest, as yet unnamed, addition to the family, Lara’s new pal. Each of my biological daughters has a cat and my other step-daughter has both a dog and a cat. We are a pet loving family.Lara and Dog

Until next YEAR,

Keep living your life.

Read, Read, Read

I’m a voracious reader.  I read everything: instructions, food labels, medicine bottles, research, fiction, non-fiction and my doctors’ notes.  In What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wrote about keeping a file for yourself for each doctor you see. 

                                    

                                     I began requesting copies of my doctor visit reports as well as my blood and urine tests so I could have my own file

                                     at home and stay on top of whatever I needed to. With these copies, my home files would be much more thorough.

                                     I was feeling burned by my previous P.A.’s failure to pick up on the low readings for the estimated GFR and felt I

 

                                     had to be my own case manager. I still do and find both the nephrologist and my primary  care

                                     physician  agree with me.

                                  

                                   Not a single doctor that I’ve seen for a test or a consultation has ever refused or been difficult about

                                   making certain I receive these copies. Most  (The one exception was a rheumotogist I encountered after

                                  the book was published who not only charged for these copies, but had me doing the telephone run

                                  around just to request them.) have encouraged me to keep my own, thorough medical files at home.  I

                                  suspect it may have made life easier for these doctors, too, since there was no calling other doctors to fax

                                  reports or requesting them from labs.  I had them and could fax them over to whichever doctor needed to

                                 see them immediately.

 

 I have been adding quite a bit to these files recently due to the cataract surgery, sleep apnea apparatus, allergies, biopsies, cryosurgery, and an asthma scare.  I have been a bit of a medical mess lately.  

Ever notice that things happen in threes? I’m beginning to think they may happen in sixes. At any rate, I began to doubt my own advice until I read the following articles. 

Opening MDs’ Notes to Patients Wins Support

By David Pittman, Washington Correspondent

Published: October 13, 2012

WASHINGTON — Patients who viewed their doctors’ notes reported feeling more in control of their care and practiced better medication adherence, a study showed.

You can read the rest of this one at:

http://www.medpagetoday.com/PracticeManagement/PracticeManagement/35298?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2012-10-15&eun=g596983d0r&userid=596983

I have to agree that I do feel more in control when I read the doctors’ notes. I’m also something of an overachiever, so I want to see my success at whatever was instructed – provided I understand it and agree with it – reflected in my doctors’ notes.

As for my doctors writing more clear and easily understood notes once they realized I would be reading them, well…. maybe it’s because they know I’m going to research that mine don’t do this.

Wait a minute; I used to spend quite a bit of time researching. It seems to me that I spend less and less time researching these days, but am not certain if that’s due to the growth of my knowledge base (Oh no!  I’m using my college instructor vocabulary in a CKD blog.  Talk about needing to write more plainly!) or if doctors really are writing in a way their patients can understand.

The other article that caught my eye was this one:

Medication beliefs strongly affect individuals’ management of chronic diseases, MU expert says

Health practitioners should use behavior-change tactics so patients take medications as prescribed

COLUMBIA, Mo. – Nearly half of patients taking medications for chronic conditions do not strictly follow their prescribed medication regimens. Failure to use medications as directed increases patients’ risk for side effects, hospitalizations, reduced quality of life and shortened lifespans. Now, a University of Missouri gerontological nursing expert says patients’ poor adherence to prescribed medication regimens is connected to their beliefs about the necessity of prescriptions and concerns about long-term effects and dependency.

The entire article is at: http://www.eurekalert.org/pub_releases/2012-10/uom-mbs101512.php

I readily accept that your beliefs dictate your behavior.  For example, my PCP was worried that I might be developing asthma and prescribed a steroid inhaler plus a daily allergy pill until I could see my immunologist.

She was being cautious, but the QVAR could cause oral thrush – a fungal condition – if I didn’t rinse my mouth and teeth carefully enough.  That was scary.  A medication that could cause another condition?

Hmmmm, it did allow me to breathe freely, though.  After a couple of weeks, I became even more uncomfortable since I believed I was developing a dependence on the QVAR. For once in my life, I didn’t research that.  I just stopped taking it.

When I did get to see my immunologist, I suggested stress might be causing the ferocious cough and the difficulty catching my breath afterward.  Not only did I have all these annoying medical problems I mentioned above, but my good buddy and my cousin died in the same week.  It was a rough patch in my life unlike any I’d experienced in the last twenty years.

My immunologist listened to me and suggested breathing exercises that might help since I wasn’t interested in any more pills or other medication.  At my request, she wrote the instructions for yoga breathing in her notes. And, of course, gave me a copy.

As for the article’s mention of mechanical reminders to take your medication, I still wouldn’t take medication if I didn’t agree with the purpose for taking it.  I do think I should have been more responsible and spoken to Dr. Zhao before I just stopped, but who says I was thinking clearly.

Bear uses the reminder on his phone whenever he needs to take a new medication (or cooks or times finish on his woodwork. He’s very clever that way.)  It works for him and he’s found some pretty interesting ring tones. If that method of reminder works for you, use it.  My meds are always meal based, so that triggers me to take the meds.

Here’s a laugh, sometimes I’m just not hungry but I know I have to have something in my stomach before I take my meds so I eat.  Can I blame all this excess weight on that?  Please?????

Until next week,

Keep living your life!

As I Sneeze My Way Through Life

Let me first open this up to you: if you were newly diagnosed with Chronic Kidney Disease and were stunned by your diagnose, where would you  look for information first ?  I ask because whatever you answer  is where I’ll be donating copies of the books.  While I’d love to make back my initial investment, the book was never meant to be a money maker for me. What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was written so no one else would have to endure the fear I did when I was first diagnosed.  It took me too long to gather the information I needed in a way I could understand it so that my fear could abate.  Why should anyone else have to endure that? Answer: There is NO reason.

Anyone ever hear of Landmark Education?  My daughter, Abby, gave me this seminar as a gift for my 65th birthday back in February.  I’d seen how it transformed her life and was definitely curious.  Guess what.  It is not a “cult.”  This seminar is REQUIRED by the Pentagon (I know that’s not a great endorsement to some people) and The Air Force Academy.  Before you decide it’s military, Buddhist monks, Trappist monks, schools, companies, families, and just plain people like you and me take their courses.  I think of it as learning how to get out of your own way so you can create whatever you want in your life.  I’m still me after the weekend seminar, but I’m a me who has found the joy in her life again.  I’m a pretty happy person, but that joy was slowly ebbing  away without my realizing it.  Not anymore.  I’ll like the whole world to learn this way of thinking about yourself so each and every person can get out of their own way and have a happy, productive life.  Thank you, Abby.

The sneezing.  Ah, yes, I was going to write about the sneezing.  Ever since I was a teenager and got a kitten for my Sweet Sixteen (hey, that is all I wanted), I knew I’m allergic to cats.  That didn’t stop me from always having cats, though.  I just bought more tissues and had chronically red eyes.  Once I had kids, they always had multiple cats in the house.  And, again, I just bought more tissues and put up with red eyes.

Then I moved out to Arizona.  That was almost ten years ago. I noticed the cat allergy got worse, but that was okay because my last child had moved out and taken her cats with her. But, wait, what was this?  Certain kinds of dogs made me sneeze, too.  Luckily, not my sweet Bella who is part Australian Cattle Dog and part German Short-Haired Pointer.  I was becoming uncomfortable and going back to the sneezing and need for lots of tissues without a cat in the house and with a dog who didn’t cause these symptoms.  What made it never worse is that I love fresh air and would keep the doors and windows opened until it hit 90 degrees each day.

It was easy enough to figure out these were allergies, but I thought because I had Chronic Kidney Disease that I couldn’t do anything about it.  When my primary care doctor suggested they were keeping me up at night (which meant I wasn’t getting the eight hours of sleep a night CKDers need), she suggested I see an allergist to see what, if anything, could be done to alleviate the situation.  Thank you, Dr. Zhao of Deer Valley Family Medicine, for suggesting I see Dr.Ching at Arizona Asthma & Allergy Institute.

It turned out that I am not only allergic to cats and certain breeds of dogs, but I now have allergies to weeds and plants that don’t live back East.  I had been exposing myself to vast amounts of pollen from Firebush, Kochia, Mesquite (ack!  I planted one outside my office window when I bought this house), juniper, white mulberry and the list goes on and on.  I could have simply sealed myself into my house with its no-air-gets-though windows and arcadia doors, but that wouldn’t have worked.  I need open windows. I need open doors. To me, they are  as essential as food.

Dr. Ching carefully explained to me that we could start a regimen of injections but it would take a long time to build up the antibodies.  I didn’t really care about that since I was getting sort of tired of red eyes and always having a tissue clutched in my hand.  I was concerned about what was in those injections. Once she explained, I had one of those why-didn’t-I-conside-this years ago moments.  They contained minute portions of each of the substances I was allergic to.  There were no chemicals in them to exit via the kidneys.  In other words, they were safe for a CKDer like me.

This is how allergy shots work: “Allergy shots work like a vaccine. Your body responds to the injected amounts of a particular allergen (given in gradually increasing doses) little by little, developing a resistance and tolerance to it. Allergy shots can lead to decreased, minimal or no allergy symptoms when you are again exposed to the allergen(s) in the shot.” You can read the rest of this explantation about immunotherapy at: http://www.aaaai.org/conditions-and-treatments/library/at-a-glance/allergy-shots.aspx

Until next week,

a less sneezy, red-eyed Gail suggests you

Keep living your life!

Getting a Little Too Technical

Ah ha!  I’m not totally off the mark.  I have successfully remembered today is Tuesday.  Oh, heck, I might as well tell the truth.  I teach on Tuesdays so it’s easy to remember it’s Tuesday, and only one step from remembering it’s Tuesday to remembering that’s a blog day.  Friday is my challenge, but I’m working on it.

There are many different sections to the nephrologist’s report so I’m going to keep on explaining some more of them for this blog.  We’ll pick up with a list of allergies that didn’t relate to CKD. Perfectly ordinary allergies that anyone could have. It seemed absurd they were even on the same page with the preceding, life changing  information that I now had Chronic Kidney Disease.

Below that, the nephrologist listed Current Medications. The only thing of note here is that I take both Lovastatin 20 mg. p.o. (by mouth) b.i.d.(twice a day) for high cholesterol and Quinaretic 12.5/20 for HBP. These two disorders added to the CKD made my health picture pretty bleak, and I couldn’t pretend it didn’t anymore.

Patient Vitals were the next item in the report and include blood pressure, pulse and weight (can’t get away from that in medical issues). They actually looked pretty good: well within range and appropriate (except for the weight, of course). So how could I have CKD? I kept coming back to that same thought. Now that I look at it in retrospect, I must have been a tough nut to crack: perfectly compliant, but alienated from the disease.

Following is the complete entry for Physical Examination: General. Although a great deal of it is redundant, there is some new information that I’ll explain in a later blog.

GENERAL: Appears as stated age. (I was insulted and decided that my youngish nephrologist just didn’t appreciate older women who didn’t look their age.)  Well nourished. (I was on a roll here and decided he meant I was fat. This is actually a referral to general wellness.)

HEENT [Head, Eyes, Ear, Nose, Throat]: No oral thrush or ulcers. Anicteric sclera. Pink conjunctiva.

NECK: No Lymphadenopathy . No acanthosis nigricans.

CARDIOVASCULAR: Regular rate and rhythm, S1, S2. No murmurs or rubs. No S3 or S4 gallop.

PULMONARY: Lungs are clear to auscultation bilaterally.  No wheezing, rales or rhonchi.

ABDOMEN: Nondistended. Soft.

EXTREMITIES: No lower extremity edema. Acyanosis.

VASCULAR: Good bounding radial pulses, equal and bilateral.

MUSCULOSKELETAL: No flank pain on palpation to the kidney. No paraspinal tenderness.

JOINTS: No effusion or stiffness of the   hands.

SKIN: No rash or unusual discoloration.

NERUO: Able to stand without evidence of orthostatis. Steady gait.

PSYCH: Alert and oriented.  Good insight.

There is nothing in the General Physical Examination that indicates I have CKD, but I do. Just as there is nothing in the Review of Systems that indicates I have CKD, but I do.  I realize many of the terms the nephrologist used are too technical and may need an explanation.  That will be coming when I offer you the glossary, later on.  For right now, they were all negative, so we don’t need to deal with them here and now.

The LABORATORY DATA section of the doctor’s report told a different story. It started with the date of my latest 24 hour urine creatinine clearance followed by a repeat of the readings.

The only ones that caught my eye were the BUN and creatinine. BUN means Blood Urea Nitrogen and may indicate a lowering of kidney function.  While my reading of 20 was not the outside limit for someone in her 60s, it was close enough to the 23 that was outside of normal limits to make me nervous. As for creatinine, the more in your blood, the less the kidneys are filtering via your urine. My 1.2 reading was out of range completely.

I already knew there was a problem, and I was doing my best to understand what it meant. My physician was a peculiar mix of cautionary and reassuring, but I couldn’t seem to get my mind around this information and what it did and did not mean to me.

The next report was IMAGING STUDIES, in this case, an ultrasound. In addition to what was noted in my chart, an ultrasound was also used to determine the number of kidneys you have as well as any blockage, stones or abnormalities. It noted the size and appearance of my kidneys, then described the location and size of several benign cysts.

Now I had cysts on top of kidney disease?  I was afraid to ask any questions for fear of more bad news except this turned out not to be such bad news.  According to the nephrologist, cysts this small were of no consequence and ordinary. I’ve never felt more grateful to have some part of my body described as ordinary.

There’s still more, but not now.  I find that when the information gets technical, less is best.

So, until Friday,

Keep loving your life.