How Will They Know?

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

 

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


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

Why Kidney Patients Should Wear a Medical Alert ID

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

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

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

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

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

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

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

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

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

6 Things to Engrave on Kidney Disease Medical ID

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

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

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

 

Click here to enlarge chronic kidney disease infographic

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

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

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

Until next week,

Keep living your life!

 

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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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!

Still Getting Birthday Gifts… like OAB

happy birthdayBear has just spoiled me and spoiled me for this birthday. It was not a special birthday, just a birthday. His reasoning, “I’m celebrating being with you for another year.” Which, of course, made me think. My first thought? I realized how much I liked being adored by the man I love.

My second?  Time changes things.  Your weight changes.  Your hair color changes.  Even your height changes. There are those that say aging is a problem. I say if you’re aging, you’re alive so it’s not a problem, but rather something to which you need to adapt.

Part of the birthday celebration was an overnight at The Desert Rose Bed and Breakfast in Cottonwood. The place was unique. They house animals they’ve rescued: llamas, cats, chickens. I thought the llamas were the most picture worthy, but then I’d never seen the kind of fluffed out rooster they had. Up the hill was a goat farm. For a city woman like me, this was heaven.

Except – there was this – there were no hand rails on the steep path from the house to the animals. Nor were there steps. The runoff from a recent hose cleaning of some apparatus near the house caused the loose gravel covered road to be slick. So we took teeny little ‘old person’ steps while the owner, a young woman possibly in her thirties, practically scampered. We got to see the animals, but we had to adapt how we got to them due to our age related capabilities.llama

The private bath was another eye opener for me. Bear opted for the room with the spa. It was so relaxing and could have even been romantic except that there were no grab rails. We slipped, we fell, we worried if Bear broke his foot.  But it was supposed to be romantic!

Oh well. There was also the kind of shower I’d only seen in magazines.  You know the kind that could easily fit six people (uh, not my style) with two separate shower heads – one on each end of the shower. This was a new toy for me, until the floor got wet. Again, no grab rails. There was no safety mat on the shower floor, either. So we tried to hold on to the walls. Hah! They were tile that was just as slippery.

You get the point?  This was a beautiful, romantic, upscale bathroom… and wasted on us because there were no safety features to accommodate our gifts from aging. Of course, not everyone would have felt this way, but we each have neuropathy which can make balancing difficult.

shoqweIn addition to grab bars in our at home bathrooms, we have no area rugs anywhere in the house. This is to cut down on the possibility of tripping. When our primary care doctor suggested ways to prevent injuring ourselves, we listened. Bear’s time flat on his back after his foot surgery convinced us we never wanted to go through that again. For me, with my ‘age related’ macular degeneration, we also use ultra-bright LED bulbs throughout the house.

Okay, so where am I going with this? I’m circling in on the kidneys via urination. Remember the kidneys produce urine which is stored in the bladder.  I wanted to know what was usual for people ‘our age’ and why. After all, I’d made the bathrooms as safe as possible understanding that one or the other of us was going to get up during the night to urinate.

I turned to The Cleveland Clinic at http://health.clevelandclinic.org/2015/12/stop-full-bladder-killing-sleep/ for some help.

“If you’re urinating more than eight times in 24 hours, that’s too much. A lot depends on your age. And if you’re between age 65-70 and going more than twice a night, you should make an appointment with your doctor. Also, see a doctor if you are getting up more than once a night if you are between age 60-65, and more than three times each night if you are age 70 or older. While your bladder’s capacity does not necessarily decrease with age, the prevalence of overactive bladder increases with age.”

Apparently, an overactive bladder may also lead to increased falls. Not fair! We’re already dealing with the neuropathy to avoid this. Oh, right. “…if you’re aging, you’re alive so it’s not a problem, but rather something to which you need to adapt.”detrusor

I wonder if aging is a factor because the detrusor (bladder muscle) ages right along with the rest of you.  A long time ago, I explained that my Chronic Kidney Disease was caused by nothing more than growing older. I hate to admit it, but it does make sense. All of you ages when you age, not just certain parts.

What is itBirthday giveaway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease! All you have to do to win is be one of the first three people to enter the contest and follow SlowItDownCKD on Twitter. Here’s link to enter for a chance to win: https://giveaway.amazon.com/p/542abbec7a52e10a#ln-fo

I hope you’re keeping an eye on P2P’s Chronic Illness Buy and Sell’s contest. I’ll be gifting a copy of one of my Chronic Kidney Disease Books to three different winners.  Each winner will receive a different book. This one started February 1st and runs until St. Valentine’s Day.  Here’s the address: http://www.facebook.com/groups/P2PBuy.Sell. You do need to be a member of the group, tag yourself in a comment below the announcement of the contest, and be involved with kidney disease as a patient or caretaker.

My accountant (Yep, working on those this week.) thinks I’m nuts to be part of so many giveaways and contests, but my mission… no, my passion… is to get information about Chronic Kidney Disease out to as many people as I can, in as many ways as I can, for as long as I can.

IMG_1398

To that end, Phoenix area readers, please let me know if you are interested in joining Team SlowItDownCKD for this year’s kidney walk at Chase Stadium on Sunday, April 17.

Until next week,

Keep living your life!

Good Enough 

Yesterday, I carefully applied my eye liner, examined myself in the magnifying mirror, nodded to myself and murmured, “Good enough.” I’ve been saying that an awful lot lately and finally realized – once a valued, constant reader asked about the connection between worsening vision and Chronic Kidney Disease – that it may be due to my CKD.

This, after I’ve spent years attributing “Good enough” to the slowest developing ever case of macular degeneration,  the age related need for reading glasses, and my impatience with makeup. Of course, then I remembered that I couldn’t read a darned thing without the reading glasses and, that without ample light, even they didn’t do the trick.eye liner

Back to the drawing board, ladies and gentlemen. Here’s what DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/eyes-and-chronic-kidney-disease/e/4732 has to say about CKD and vision.

Diabetes and high blood pressure aren’t only the leading causes of chronic kidney disease (CKD). They’re also the leading causes of eye disease and loss of vision. If your renal disease is a result of either condition your vision may be at risk.

Some of the most common eye problems that occur in CKD patients are retinopathy, cataracts and glaucoma.”

Here are some quickie reminders before we continue. The American Diabetes Association at http://www.diabetes.org/diabetes-basics/  tells us, “Diabetes is a group of diseases characterized by high blood glucose levels that result from defects in the body’s ability to produce and/or use insulin.”

Book CoverI turned to What Is It and How Did I Get It? Early Stage Chronic Kidney for a reminder about high blood pressure: “A possible cause of CKD, 140/90mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too.”

However, the American Heart Association has changed this a bit as of Dec. 2013. “The American Heart Association maintains its recommendation of initiating treatment — starting with lifestyle changes and then medication if necessary — at 140/90 until age 80, then at 150/90.” Yet, The Journal of the American Medical Association maintains that people over 60 should not be considered hypertensive until they register 150/90.

While that’s not new information to me, I did wonder how hypertension could affect your sight. The American Academy of Ophthalmology at http://www.aao.org/eye-health/ask-eye-md-q/how-does-high-blood-pressure-affect-vision came to the rescue here.

“If the blood pressure is very high it can be called malignant hypertension and cause swelling of the macula and acute loss of vision. Otherwise hypertension can cause progressive constriction of the arterioles in the eye and other findings. Usually high blood pressure alone will not affect vision much, however hypertension is a known risk factor in the onset and/or progression of other eye disease such as glaucomadiabetic retinopathy, and macular degeneration as well as blocked veins and arteries in the retina or nerve of the eye that can severely affect vision.”

My first response to this information was, “What’s an arteriole? A small artery?”  Time to find out. I turned to my old friend MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2335 for the definition.arteriole in eye

“A small branch of an artery that leads to a capillary. The oxygenated hemoglobin (oxyhemoglobin) makes the blood in arterioles (and arteries) look bright red.”

That makes sense.  Do you remember what glaucoma and/or macular degeneration are?

Back to another trusted source for one of the definitions: The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/glaucoma/basics/definition/con-20024042.

“Glaucoma is a group of eye conditions that damage the optic nerve, which is vital to good vision. This damage is often caused by an abnormally high pressure in your eye.”

I sort of, maybe, remembered writing about macular generation in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.Digital Cover Part 2 redone - Copy Sure enough, I found it.

“An eye disease that progressively destroys the macula, the central portion of the retina, impairing central vision. Macular degeneration rarely causes total blindness because only the center of vision is affected.” (according to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=10027). Oh, MedicineNet again.  That’s a good source for easily understood medical definitions if you’re looking for one.

Let’s say you don’t have diabetes or hypertension.  Does CKD affect your vision then?  Interestingly enough, most sites I pulled up talked more about CKD being caught during an eye exam than CKD causing vision problems… except in diabetic End Stage Renal Disease.  This is when you need to have your eyes carefully checked and often.

PubMed, part of the US National Library of Medicine, National Institutes of Health, at http://www.ncbi.nlm.nih.gov/pubmed/21784818 puts a bit of a different spin on the vision/CKD exploration. “Retinal abnormalities are common in inherited and acquired renal disease.”

journal_logoWow! This is from an older study – 2011 – conducted by the well-respected Clinical Journal of the American Society of Nephrology.  I don’t know if my CKD is inherited or acquired, but it is renal disease and I do have vision problems… and so does my valued, constant reader.

By the way, blurred vision may be an indication that you are suffering from uremia. This reminder brought to you by the Renal Network’s Kidney Patient News at http://www.kidneypatientnews.org/ckd/index.php.

Of course, I can almost hear some of you asking what uremia is.  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was DIGITAL_BOOK_THUMBNAILof help here: it’s “the buildup of waste in the blood due to kidney failure.”

I really enjoy learning from the research I do to answer your questions, so thank you for another opportunity to do that. Just keep in mind that I’m not a doctor and you need to ask these questions of your nephrologist who will answer them or refer you to another specialist if need be.

Another birthday approaches – which I consider another opportunity to give you gifts.  Keep your eye on P2P’s Chronic Illness Awareness Buy and Sell’s page on Facebook and SlowItDownCKD on Facebook, Twitter, and Instagram in addition to this blog for Book Give- Away announcements.happy birthday

Last but not least, The  17th Annual Southwest Nephrology Conference and 4th Annual Convention of Cardio Renal Society of America will be held right here in Arizona at the We-Ko-Pa Resort & Conference Center in Scottsdale. The dates are March 11-12. I’ll be attending part of the time. Why not meet me? Register at www.swnc.org or by calling 1 (877) 587-1357.

Until next week,

Keep living your life!

Paint on My Nails

I am happy to say that we have had quite a few celebrations lately.  Abby successfully changed careers from insurance to municipal funding.  Lara was promoted to the first female Krav Maga head instructor in Phoenix. Nima started her New York tour company (Spellbound… give her a call.). firworksOne of my son-in-laws changed careers, too, and is now the CEO of an established firm.  Oh, and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was published.

Having four grown daughters now and in the throes of Macular Degeneration which is now at the point of I-can’t-see-my-nails-clearly-enough-to-do-them-myself (Why, oh why, couldn’t it be I-can’t-see-the-dishes-clearly-enough-to-do-them-myself instead?), I caved.  I don’t really like anyone fussing with any part of my body, but I wanted to look really nifty for each of these celebrations.  So I went for a manicure/pedicure again…and again…and again… and then I got to thinking.

Indeed, there is a relationship between Chronic Kidney Disease and nail polish, but it isn’t exactly what I expected.  I scurried right over to DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/hair,-nails-and-chronic-kidney-disease/e/  and found the following.

Nitrogen waste products build up in people with CKD, which can lead to damaged fingernails and toenails. Show your doctor if you have any abnormal change in your nails such as:

  • Yellow or opaque coloring
  • Brittle nails
  • Pitted nails (can easily break off or fall off)painted nails
  • Linear depressions across the fingernail (called Beau’s lines)
  • Ridge-shaped nails
  • Raised ridges, thin and concave shaped (called koilonychia)
  • White streaks, spots on the nails (called leukonychia)

It’s clear you can’t see these damage indicators if you can’t see your nails.  All right then, maybe I could have my nails done for the occasions, then take off the polish or the gel tips after.  Would that work for me, I wondered?

The concern over the chemicals found in nail polishes—and gel manicures—are {sic} not new, but the link to cancer, however, is. In a recent article published in the  Journal of the American Academy of Dermatology, Chris Adigun, M.D., an assistant professor of dermatology at NYU School of Medicine, emphasized the dangers of frequent use of gel manicures.  ”The essential UV light required during the application of the gel is a risk factor for skin cancer,” wrote Dr. Adigun.  “[And] in general, any manicure left in place for an extended period of time is not a good idea Journal of American Dermatologybecause you are a not seeing what is going on underneath the nail polish,” he says.

Frequent gel manicures can lead to nail thinning, brittleness, peeling, and cracking. Or worse, gel polish can hide nail discolorations that can signal various lung, heart, kidney {my italics} and liver diseases, as well as diabetes and anemia.

VidaVibrante.com at http://www.vidavibrante.com/2013/08/19/gel-manicures-when-too-much-of-a-good-thing-is-bad-for-your-health/  is not a site for CKD patients specifically, nor is it a medical site.  Yet, that’s where I found the above medical cautions. This is not looking good.

I was surprised to find that WebMD at http://www.webmd.com/beauty/nails/20120411/is-your-nail-polish-toxic had this information.

In recent years, some nail product makers have removed these chemicals {This refers to dibutyl phthalate, toluene, and formaldehyde.} from their products, then labeled them as non-toxic.

“What we found out is that in many of the cases the label was inaccurate,” Lang tells WebMD. “And that’s really what our message is. We don’t know if our samples are representative of the industry.”

Some products that did not carry a toxic-free label actually had none of the chemicals in them, the researchers also found.

Encarta Dictionary tells us toluene istoulene

a colorless liquid aromatic hydrocarbon resembling benzene, but less flammable. Use: solvent, high-octane fuel, organic synthesis.

And we put that on our nails?  Willingly?  I think that’s the end of thinking about gel tips for me, but does it mean I have to give up this new practice of having my nails done entirely?  Even for special occasions?  Oh, okay, lots of special occasions.

Ummm, so what – if any – brands are safe? I jumped over to EcoWatch at http://ecowatch.com/2014/02/19/7-nontoxic-nail-polish-brands/ for some brands. Zoya, Piggypaint, Suncoat, Honeybee Gardens, RGB, Sheswai, and LVX are the brands they named.

I don’t know very much about cosmetics – including nail polish – but I’m certainly willing to give these brands a try. Allow me to join the rank of those who misquote the Bard’s line from Macbeth: Vanity {It’s really “frailty.”}, thy name is woman.Kidney Arizona

But I’m not misquoting this. The Phoenix Kidney Walk is April 19th and we have a team!  SlowItDown is the umbrella group (not really sure that’s the right word) for all the books and the blog.  Remember asking me to come out from behind the typewriter?  This is it!  Use the walk as an excuse to introduce yourself to me or, better yet, join the team.  Just in case you don’t remember how:

Go to Kidneywalk.kintera.org. You’ll see “Register Here” in blue on the top left. Click it. Then you’ll need to sign an agreement, click join a team, choose SlowItDown from the dropdown. Hit continue and it will ask you to create a sign on with the usual basic questions asked.

If you’d prefer not to walk, but do want to donate, please do that in Team SlowItDown’s name.  Thanks, all.

Big news!  Every third order for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 will be FREE from now until the end of the month.  We already had an order-it-free day on my birthday and now Amazon has come up with this deal.  Yay, Amazon.  I urge you to The_Book_of_Blogs-_M_Cover_for_Kindletake advantage of this. To make certain there’s a free book in the deal for you, ask two friends to order the book at the same time.

Keep an eye out for Part 2, also.  I’m working really hard to have that out by the end of this shortened month. Funny story about why there’s a Part 1 and a Part 2.  No matter how I edited, cut, shortened the original version of the book, it came out to over 600 pages.  I could barely hold it!

Until next week,

Keep living your life!

The Way I See It

There I sat moping because my eyes are getting worse and I didn’t know why.  So I did what I do best (and what brings me right up again, believe it or not) and started researching.  And I found multiple answers!  That’s terrific because I’ve already drunk my two cups of coffee today, so I couldn’t turn to them for solace.

You’ve probably figured out the answers are mostly Chronic Kidney Disease related. This is not something I wrote about in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. When I researched for the book, macular degeneration never even peeked out at me. (How do you like that play on vision related words?  Macular – peeked?  No?  Oh well.)Book Cover

Anyway…. let’s do our usual back to the basics for a topic we haven’t visited in a while.  Macular degeneration is, “An eye disease that progressively destroys the macula, the central portion of the retina, impairing central vision. Macular degeneration rarely causes total blindness because only the center of vision is affected,”

according MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=10027

I suppose the part about not causing total blindness should make me feel better, but I need more information first. The retina?  Anyone? No?

It’s, “… a multi-layered sensory tissue that lines the back of the eye. It contains millions of photoreceptors that capture light rays and convert them into electrical impulses. These impulses travel along the optic nerve to the brain where they are turned into images.There are two types of photoreceptors in the retina: rods and cones. The retina contains maculaapproximately 6 million cones. The cones are contained in the macula, the portion of the retina responsible for central vision. They are most densely packed within the fovea, the very center portion of the macula. Cones function best in bright light and allow us to appreciate color. There are approximately 125 million rods. They are spread throughout the peripheral retina and function best in dim lighting. The rods are responsible for peripheral and night vision.”

I had to dig deep for a thorough, yet easily understood definition. Thank you St. Luke’s Cataract and Laser Institute at http://www.stlukeseye.com/Anatomy/retina.html for helping out here.

Well, now you understand why I keep posting all those pictures containing glorious color.  That’s my way of saving up color for when I can’t see it anymore.  Although, it’s really the rods that are causing me most trouble right now.

Dim the lighting and I can’t tell what I’m looking at.  I don’t know where Bear is in a dim room unless he speaks and my poor black and white Bella!  She’s been walked into so often I don’t know why she doesn’t just run when she sees me coming.

However, it’s not as easy as just that.  There are two kinds of macular degeneration: wet and dry. I went back to our old pal Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/wet-macular-degeneration/basics/definition/CON-20043518 for the definitions:

“Wet macular degeneration is a chronic eye disease that causes vision loss in the center of your field of vision. Wet macular degeneration is generally caused by abnormal blood vessels that leak fluid or blood into the region of the macula (MAK-u-luh). The macula is in the center of the retina (the layer of tissue on the inside back wall of your eyeball). Wetmd image macular degeneration is one of two types of age-related macular degeneration. The other type — dry macular degeneration — is more common and less severe. Wet macular degeneration almost always begins as dry macular degeneration. It’s not clear what causes wet macular degeneration.”

Wait a minute.  Did you catch that “age-related macular degeneration”?  That’s what I have and that’s where the Chronic Kidney Disease comes into our equation.

I went to The National Institutes of Health website at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2390960/ to find the conclusions from a Journal of American Society of Nephrology study about the relationship between macular degeneration and Chronic Kidney Disease:

“…persons with moderate chronic kidney disease were 3 times more likely to develop early age-related macular degeneration than persons with no/mild chronic kidney disease.”

Thank you very much, CKD, for another undesired gift.  To be honest, although this has not shown up anywhere else in my family history, I don’t know if I would have developed macular degeneration even if I didn’t have CKD.  Apparently, smoking is another risk factor and that is something I played around with for decades – never becoming a chain smoker, but smoking nervously and socially.  Hey, we didn’t really know what the consequences could be at that time.

WebMD at http://www.webmd.com/eye-health/macular-degeneration/age-related-macular-degeneration-overview tells us the other risk factors:

“… high blood pressure, high cholesterol, obesity, and being light skinned, female, and having a light eye color are also risk factors for macular degeneration.”

racesUn-oh, I fit every one of these criterion (if light brown eyes are considered light eye color).  Sometimes I wish I had foresight instead of hindsight.  While I couldn’t have done anything about my race, sex, or eye color, there’s quite a bit I could have worked on as far as hypertension, hyperlipidemia, and weight.

Because I am a Pollyanna and need to find hope everywhere, my hope here is that my experience can at least serve as an object lesson for our younger Chronic Kidney Disease sufferers.  Sort of a do-as-I-say, not do-as-I-do example, if you will.

Change of subject:  The digital version of the book continues to sell far better than print copies so I want to remind you of an Amazon.com offer.  If you – or anyone you know – order a print copy, you (or that person) can order the digital copy for $2.99 instead of the usual $9.99.  The program is called Kindle Matchbook. (http://www.amazon.com/What-Is-How-Did-Get/dp/1457502143/ref=pd_rhf_se_p_img_1)

I especially recommend this program to medical students since I have found textbook rental companies trying to rent my book for one semester for more than it costs to buy the book.  Ridiculous!   This program is also valuable because you can share your digital copy with others.

Our Yom Kippur was filled with family and happiness.  If you celebrate, I hope yours was too.  If Eid al-Fitr is what you celebrate as a Muslim, my hope is that breaking the 30 day dawn to dusk fast of Ramadan was a joyous occasion for you. For the Catholics, I hope your celebration of the Feast of St. Francis of Assisi was everything you’d hoped it would be.  All three were celebrated this past Saturday.  I’ll take that as an indication that there are more similarities rather than differences between people of different religions.  For everyone who didn’t celebrate a religious holiday this weekend, as always, I wish you health and happiness.

Until next week,

Keep living your life.