To Continue…

National Kidney Month is just flying by. This is actually the last week and I doubt I’ll be able to post the rest of the 1in9 chapter before next month. But then again, it’s always Kidney Month for those of us with Chronic Kidney Disease. By the way, thank you to the reader who made it a point of telling me she can’t wait to read the rest of the chapter. Sooooo, let’s get started!

***

Nephrologist switch. The new one was much better for me. He explained again and again until I understood and he put up with a lot of verbal abuse when this panicky new patient wasn’t getting answers as quickly as she wanted them. Luckily for me, he graciously accepted my apology.

After talking to the nephrologist, I began to realize just how serious this disease was and started to wonder why my previous nurse practitioner had not caught this. When I asked her why, she responded, “It was inconclusive testing.” Sure it was. Because she never ordered the GFR tested; that had been incidental! I feel there’s no sense crying over spilled milk (or destroyed nephrons, in this case), but I wonder how much more of my kidney function I could have preserved if I’d known about my CKD earlier.

According to the Mayo Clinic, there are 13 early signs of chronic kidney disease. I never experienced any of them, not even one. While I did have high blood pressure, it wasn’t uncontrollable which is one of the early signs. Many, like me, never experienced any noticeable symptoms. Unfortunately, many, like me, may have had high blood pressure (hypertension) for years before CKD was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD. I find it confusing that uncontrollable high blood pressure may be an early sign of CKD, but hypertension itself is the second leading cause of CKD.

Here’s the part about my researching. I was so mystified about what was happening and why it was happening that I began an extensive course of research. My nephrologists did explain what everything meant (I think), but I was still too shocked to understand what they were saying. I researched diagnoses, descriptions of tests, test results, doctors’ reports, you name it. Slowly, it began to make sense, but that understanding only led to more questions and more research.

You’ve probably already guessed that my world changed during that first appointment. I began to excuse myself for rest periods each day when I went back East for a slew of family affairs right after. I counted food groups and calories at these celebrations that summer. And I used all the errand running associated with them as an excuse to speed walk wherever I went and back so I could fit in my exercise. Ah, but that was just the beginning.

My high blood pressure had been controlled for 20 years at that time, but what about my diet? I had no clue there was such a thing as a kidney diet until the nutritionist explained it to me. I’m a miller’s granddaughter and ate anything – and I do mean anything – with grain in it: breads, muffins, cakes, croissants, all of it. I also liked lots of chicken and fish… not the five ounces per day I’m limited to now.

The nutritionist explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out went my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

I was in a new food world. I’d already known about restricting sodium because I had high blood pressure, but these other things? I had to keep a list of which foods contain them, how much was in each of these foods, and a running list of how much of each I had during the day so I knew when I reached my limit for that day.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last decade: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them. I take another drug for my brand new diabetes. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I was a dancer. Wasn’t that enough? Uh-uh, I had to learn about cardio and strength training exercise, too. It was no longer acceptable to be pleasantly plumb. My kidneys didn’t need the extra work. Hello to weights, walking, and a stationary bike. I think I took sleep for granted before CKD, too, and I now make it a point to get a good night’s sleep. A sleep apnea device improved my sleep—and my kidney function rose.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

***

There’s so much more to tell you about my personal CKD journey… and you’ll read more of it next week. Although, I should remind you that the entire book is available in print and digital on both Amazon.com and B&N.com, just as the entire SlowItDownCKD series of books is.

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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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!

Women and Water (Men, too)

Welcome to March: National Kidney Month and Women’s History Month. I’m going to fudge a bit on the ‘History’ part of that as I did last month with Black History Month. I don’t often have guest bloggers, but this month will feature two women as guest bloggers in honor of Women’s History Month. The first is Jessica Walter, who sent me the following email last month:

Hi There,

I am a freelance health and food writer, I have teamed up with a small senior lifestyle advice site, I worked with them to develop a complete guide on how to eat better and be healthier from a dietary point of view. This includes detailed information on why being hydrated is so important. … you can check out the article here:

https://www.senioradvisor.com/ blog/2017/02/7-tips-on- developing-better-eating- habits-in-your-senior-years/.

I liked what Jessica had to say and how easily it could be adapted not only for senior Chronic Kidney Disease patients, but all Chronic Kidney Disease patients.

In addition, she sent me this short article about hydration and CKD. It’s easy to read and has some information we constantly need to be reminded of.

Staying Hydrated When You Have Chronic Kidney Disease

We all know that drinking water is important for our health, and monitoring fluid intake is critical for those with chronic kidney disease. Too much water can be problematic, but so can too little. Dehydration can be serious for those with chronic kidney disease. If you are suffering from vomiting, diarrhea, fever, or diabetes, or if you urinate frequently, you may become dehydrated because you are losing more fluid than you are taking in. For those without chronic kidney disease, the solution is to increase the intake of water until the body is sufficiently hydrated.

Since dehydration can decrease blood flow to the kidneys, and as fluid intake must be controlled in patients with chronic kidney disease, it’s important to closely monitor their fluid intake and loss in these circumstances.

Recognizing The Signs

The first step is to recognize the physical signs of dehydration. You may have a dry mouth or dry eyes, heart palpitations, muscle cramps, lightheadedness or fainting, nausea, or vomiting. You may notice a decrease in your urine output. Weight loss of more than a  pound or two over a few days can also be an indicator of dehydration. If you are taking ACE inhibitors and ARBs, such as lisinopril, enalapril, valsartan, or losartan, or water pills or diuretics, these medications can harm your kidneys if you become dehydrated. It is doubly important to be aware of signs of dehydration if you are on any of these medications.

Steps to Take

To rehydrate your body, start by increasing your intake of water and ensure that you are eating plenty of fruits and vegetables. (Me here: remember to stay within your renal diet guidelines for fruits, vegetables, and fluids.)If you cannot keep water down, or if increased consumption doesn’t alleviate the signs of dehydration, contact your health care provider  immediately.

They may also recommend a different fluid than plain water since electrolytes and minerals can also be reduced if you are dehydrated, but you may still need to watch your intake of potassium, phosphorus, protein, and sodium. Your doctor may recommend an oral rehydration solution that will restore your body to a proper level of hydration. If you have a fluid restriction because you are on dialysis, you should consult your healthcare provider if you have issues with or questions about hydration. Taking in or retaining too much fluid when you have these restrictions can lead to serious complications, including headaches, swelling, high blood pressure and even stroke. Carefully monitoring your fluid intake and watching for signs of dehydration will help you to avoid the consequences of dehydration.

I’ve blogged many times over the last six years about hydration. I’m enjoying reading this important material from another’s point of view. I’m sorry Jessica’s grandmother had to suffer this, but I’m also glad Jessica chose to share her writing about it with us.

 

This June, 2010, article included in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 furthers explains:

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

The CDC also offers advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

  • Drink more water than usual and don’t wait until you’re thirsty to drink.
  • Check on a friend or neighbor, and have someone do the same for you.
  • Check the local news for health and safety updates regularly.
  • Don’t use the stove or oven to cook——it will make you and your house hotter.
  • Wear loose, lightweight, light-colored clothing.
  • Take cool showers or baths to cool down.
  • Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning

It’s clear we need to keep an eye on our hydration. While we’re doing that, keep the other eye out for SlowItDownCKD 2016 purposely available on World Kidney Day on Amazon.

Until next week,

Keep living your life!

Starting the New Year with a Miracle

fireworksHappy New Year and welcome to 2017.  We did our usual stay in, watch movies, and toast with non-alcoholic champagne (I know that’s contradictory.) at midnight.  With our New York daughter here, it was even more meaningful.

A new year brings to mind new beginnings… and that leads me to Part 3 of the miracle series, as promised. I am so, so serious about this and hope you decide to take on for yourself causing a miracle in CKD by sharing information.

I was thinking about social media the other day. Where are the public service announcements about Chronic Kidney Disease?  I am still – nine years after my diagnose – knocking on seemingly closed doors to encourage Public Service Announcements everywhere. While the public doesn’t seem as involved with network television or radio as they were when I was younger, we now have Twitter, Facebook, Instagram, LinkedIn, and Tumblr to name just a few ways we can share.

I use a both a Facebook page and a Twitter account to post one fact about or information pertinent to those with CKD daily. Join me at newslowitdownckdfbcoverSlowItDownCKD on Facebook and @SlowItDownCKD on Twitter. I also monitored Libre’s Tweet Chat with Gail Rae 1/10/12. I knew nothing about Twitter at the time, but it was a way to share the information I had. You may not want to do this, but feel free to ‘steal’ the information posted and share it with others.

There are also Podcasts, Internet Radio Shows, YouTubes, etc. to share what the public needs to know about CKD. A YouTube can be viewed by one person who posts it on Facebook and go viral. Don’t bother looking at mine. They’re pretty painful. I’ll look into this again at a later date.

On the other hand, these are some of the social media venues that interviewed me: The Edge

Podcast 5/9/16, Online with Andrea 3/23/15 & 3/07/12, What Is It? How Did I Get It? 2/17/12, and Improve Your Kidney Health with Dr. Rich Snyder, DO 11/21/11. I never knew these venues existed before I started working towards the miracle I wanted to cause.

Lo and behold, my sharing brought others who wanted to know about CKD, so I was profiled by Nutrition Action Healthletter, Center for Science in the Public Interest 9/16, New York State United Teachers ‘It’s What We Do’  8/9/16, and Wall Street Journal ‘Health Matters’  1/13/14. Remember that Clairol commercial in last week’s blog?

Let’s say you agree that sharing can cause a miracle in Chronic Kidney Disease and want to join in living a life causing this miracle. The first thing you’d want to do is learn about CKD. The American Kidney Fund and the National Kidney Foundation both have a wealth of information written AKF logofor the lay person, not the medical community. By the way, the National Kidney Foundation also has information about NKF-logo_Hori_OBCKD globally. Maybe you’d rather join in World Kidney Day gatherings and distribute materials. Then keep an eye on World Kidney Day’s Twitter account for locations around the world.

As you can see, I’ve been creating this miracle is by writing for these organizations and more kidney specific ones, as well as guest blogging for various groups. You may not choose to do that… but you can speak at your religious group meetings, your sports league, your weekly card game, or whatever other group you’re comfortable with.

A miracle doesn’t have to be profound. You can help create this one. All you need is a little education about CKD and the willingness to introduce the subject where you haven’t before.friends

I live my life expecting miracles and I find they happen.  This miracle that I’m causing – and is happening – has been (and is) created by sharing, sharing, sharing. The more than 200 million people who have Chronic Kidney Disease need this information, to say nothing of those who have yet to be diagnosed.

kidneys5There aren’t that many organs to go around for those who didn’t know they had CKD and progressed to End Stage Renal Disease.  We know that transplantation is a treatment, not a cure, and one that doesn’t always last forever. We also know that kidneys from living donors usually last longer than those from cadaver donors. Share that, too.

We have our no cost, no pain, no tools needed miracle right on our lips… or at our fingertips. Start sharing, keep sharing, urge others to share, and help to prevent or slow down the progression in the decline of kidneys worldwide. Sharing is causing a miracle in CKD. Both deaths and hospitalizations for this disease have declined since 2008. If that isn’t a miracle, I don’t know what is. I keep saying I live my life expecting miracles; this is one of them.hearing

I was a private person before this disease. Now, in addition to the Facebook page and twitter accounts, I make use of an Instagram account (SlowItDownCKD) where I post an eye catching picture daily with the hash tag #SlowItDownCKD. This brings people to my weekly blog about CKD – as does my Instagram account as Gail Rae-Garwood – and the four books I wrote about it: one explaining it and the others the blogs in print – rather than electronic form for those who don’t have a computer or are not computer savvy. Time consuming? Oh yes, but if I expect to live a life of miracles, I need to contribute that time to share what I can about the disease and urge others to do the same.IMG_2979

I am urging you to realize you are the others I am asking to help cause a miracle in Chronic Kidney Disease. As the Rabbinic sage Hillel the Elder said, “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?” Now. You. Me. Others. CKD.

Until next week,

Keep living your life!

Never Too Old to Learn

CoffeeCupPopCatalinStockLast week, we were delighted to have an overnight guest we hadn’t seen for a year or two. While we were all waking ourselves up the next morning, I asked him if he’d like some coffee.  Yep, he’s my family; that look of delight on his face when he thought of coffee confirmed it. Then I asked if he took milk in his coffee. Hmmm, more confirmation: he passed on the milk claiming lactose intolerance, another family trait. But when we got to the sugar question, he startled me. His response was something like no thanks, I have high cholesterol. After a moment of stunned silence, I asked why he connected cholesterol and sugar. He said his doctor told him to cut down on sugars to lower his cholesterol. Hmmm, very interesting.

This is the definition of cholesterol from What Is It and How Did I Get It? Early Stage Chronic Early Disease:FullSizeRender (2)

While the basis for both sex hormones and bile, can cause blockages if it accumulates in the lining of a blood vessel.

If that doesn’t ring a bell, here’s the definition of dyslipidemia:

Abnormal levels of cholesterol, triglyceride or both

Now we know there’s a normal and an abnormal level of cholesterol and that can’t be good. Is that a big deal?

It is if you have Chronic Kidney Disease.  Dr. Joseph Vassalotti, one of leading nephrologists in the U.S., explained it to reporter Jane Brody in an interview which is included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.

IMG_2982Good  control  of  blood  sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function.

I repeat, “…can delay the loss of kidney function.” That has been your ultimate goal since you were diagnosed, hasn’t it?

You may become confused by the three different kinds of cholesterol readings when you see the results of your blood tests.  I know I was, so I researched them and then wrote about them in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol. LDL is Low Density Lipoprotein or the ‘bad’ kind that can clog your arteries. VLDL is Very Low Density Lipoprotein and one of the bad guys, too. It contains more triglycerides than protein and is big on clogging those arteries.FullSizeRender (3)

Wait a minute. Where did triglycerides come into this? According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/triglycerides/ART-20048186

Triglycerides and cholesterol are separate types of lipids that circulate in your blood. Triglycerides store unused calories and provide your body with energy, and cholesterol is used to build cells and certain hormones. Because triglycerides and cholesterol can’t dissolve in blood, they circulate throughout your body with the help of proteins that transport the lipids (lipoproteins).

Still with me?  Good, because you can do something about this.

cholestero

Sometimes, it’s as simple as lifestyle changes like adjusting your diet. While I don’t agree with all of this advice, DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/lowering-cholesterol-with-chronic-kidney-disease/e/5304 can get you started.

  •  Avoid foods high in saturated fat and cholesterol such as whole milk, cheese and fat from meat.
  • Bake, grill, broil and roast your poultry, fish and meat. Choose lean cuts of meat and trim off any fat.
  • Eggs are an excellent source of protein, but the yolks are high in cholesterol. Try egg substitutes like Egg Beaters® or Scramblers®, or substitute two egg whites for a whole egg.
  • Eat at least two servings of fish every week. Salmon, tuna, herring and trout contain good amounts of omega-3 fatty acids that lower your risk of heart disease.
  • Try spreads like Benecol® or Take Control® in place of butter or margarine. Plant sterols and stanols in these spreads help lower cholesterol levels.
  • Choose oils that are high in mono- and polyunsaturated fats: canola, olive, peanut, corn, safflower, soybean and sunflower.
  • Read food labels and try to eliminate foods with trans-fats (found in hydrogenated oils, margarine and many commercially prepared snack foods).
  • Eat kidney-friendly fruits and vegetables.water melon

Of course, if you’re diabetic or prediabetic, you need to modify these suggestions for your diet.

As was suggested in this Everyday Health article (http://www.everydayhealth.com/high-cholesterol/fitness-and-cholesterol.aspx) included in SlowItDownCKD 2015, exercise will help.

       Try these exercise options to help shed pounds and manage high cholesterol:

  • Walking
  • Jogging or running
  • Swimming
  • Taking an aerobics class
  • Biking
  • Playing tennis, basketball, or other sports
  • Using weight machines or lifting free weights to build muscle tone

statinsIf life style changes don’t work for you, your doctor may prescribe a statin.  The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/statin defines this as:

any of a group of drugs (as lovastatin and simvastatin) that inhibit the synthesis of cholesterol and promote the production of LDL-binding receptors in the liver resulting in a usually marked decrease in the level of LDL and a modest increase in the level of HDL circulating in blood plasma

There are substantial arguments against taking statins, but there are also substantial arguments for taking them.  This is something you have to discuss with your doctors since you have a unique medical condition.

Finally, sugar. What did my cousin’s doctor mean about sugar’s role in lowering his cholesterol? This was news to me, so I researched. Sure enough, my cousin’s doctor was right.  According to Progressive Health at http://www.progressivehealth.com/sugar-may-be-the-cause-of-your-elevated-cholestero.htm:

Sugar is a good example of a carbohydrate with high glycemic index. It can, therefore, increase the amount of small, dense LDL particles in the blood.

Although, health experts used to advocate that we cut the amount of sugar we consume because high blood sugar can cause insulin resistance and increase the risk of diabetes, there is now another reason to cut down on our sugar consumption.sugar

A number of studies show that sugar can affect the kind and amount of cholesterol released into the blood.

So? According to the US National Library of Medicine National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4297703/

That’s a pretty big ‘so.’

Until next week,

Enjoy your life!

Feeling the Pressure

labor dayFor those of you in the United States, here’s hoping you have a healthy, safe Labor Day.  I come from a Union family. So much so that my maternal grandfather was in and out of jail for attempting to unionize brass workers. That was quite a bit of pressure on my grandmother, who raised the four children and ran a restaurant.

I knew there was more than my personal history with the holiday so I poked around and found this from http://www.usatoday.com/story/news/nation/2016/09/04/labor-day-history/89826440/

“In the late 1800s, the state of labor was grim as U.S. workers toiled under bleak conditions: 12 or more hour workdays; hazardous work environments; meager pay. Children, some as young as 5, were often fixtures at plants and factories.

The dismal livelihoods fueled the formation of the country’s first labor unions, which began to organize strikes and protests and pushed employers for better hours and pay. Many of the rallies turned violent.

On Sept. 5, 1882 — a Tuesday — 10,000 workers took unpaid time off to march in a parade from City Hall to Union Square in New York City as a tribute to American workers. Organized by New York’s Central Labor Union, It was the country’s first unofficial Labor Day parade. Three years later, some city ordinances marked the first government recognition, and legislation soon followed in a number of states.”

Now that’s pressure, but I want to write about another kind of pressure today: your blood pressure.Mahomeds Sphygmograph

Being one of those people who is required to check their blood pressure at least once a day, I was surprised to learn that doctors didn’t realize the importance of maintaining moderate blood pressure until the 1950s. Yet, ancient Chinese, Greeks, and Egyptians knew about the pulse. I wonder what they thought that was.

The American Heart Association explains the difference between the blood pressure and the pulse, and offers a chart to exemplify. The column without the heading refers to ‘Heart Rate.’

Blood Pressure
What is it? The force the heart exerts against the walls of arteries as it pumps the blood out to the body The number of times your heart beats per minute
What is the unit of measurement? mm Hg (millimeters of mercury) BPMs (beats per minute)
What do the numbers represent? Includes two measurements:
Systolic pressure
(top number):
 The pressure as the heart beats and forces blood into the arteries
Diastolic pressure
(bottom number):
 The pressure as the heart relaxes between beats
Includes a single number representing the number of heart beats per minute
Sample reading 120/80 mm Hg 60 BPM

You can read more about this at http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Blood-Pressure-vs-Heart-Rate_UCM_301804_Article.jsp.

bp cuffAccording to Withings, a French company that sells blood pressure monitoring equipment, at http://blog.withings.com/2014/05/21/the-history-of-blood-pressure/:

“The first study on blood circulation was published in 1628 by William Harvey – an English physician. He came to the conclusion that the heart acts as a pump. At that point it wasn’t clear that blood circulated, but after a little calculation he was pretty sure that blood is not ‘consumed’ by the organs. The physician then concluded that blood must be going though (sic) a cycle.”

Ah, but did his measurement include both numbers? In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I satisfied my own curiosity as to why our blood pressure readings always have two numbers, one atop the other:What is it

“The first number… called the systolic is the rate at which the heart contracts, while the second or diastolic … is when the heart is at rest between contractions.  These numbers measure the units of millimeters of mercury to which your heart has raised the mercy.”

Uh, raised the mercury of what? Well it’s not the sphygmomanometer as we now know it. By the way, this is the connection between blood pressure and Chronic Kidney Disease that I mentioned in SlowItDownCKD 2015:

“I wonder how frustrated Dr. Bright became when he first suspected that hypertension had a strong effect on the kidneys, but had no way to proveIMG_2980 that theory since the first practical sphygmomanometer (Me here: That’s the device that measures your blood pressure.)  wasn’t yet available.”

Well, why is hypertension – high blood pressure – important in taking care of your kidneys anyway?  It’s the second leading cause of CKD. The Mayo Clinic succinctly explains why at http://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/high-blood-pressure/art-20045868

“Your kidneys filter excess fluid and waste from your blood — a process that depends on healthy blood vessels. High blood pressure can injure both the blood vessels in and leading to your kidneys, causing several types of kidney disease (nephropathy). “

Well, how do you avoid it then? One way is to take the pressure off yourself. (As a writer, I’m thoroughly enjoying that this kind of pressure can affect the other kind – the blood pressure. As a CKD patient, I’m not.)

Pressure on yourself is usually considered stress. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, there’s an explanation of what stress does to your body.

FullSizeRender (3)“…we respond the same way whether the stress is positive or negative…. First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {High blood sugar} and hypertension {High blood pressure} both play a part in Chronic Kidney Disease. If you still haven’t resolved the stress, additional hormones are secreted for more energy.”

What else? This list from the American Kidney Fund was included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:IMG_2982

  • Eat a diet low in salt and fat
  • Be physically active
  • Keep a healthy weight
  • Control your cholesterol
  • Take medicines as directed
  • Limit alcohol
  • Avoid tobacco

AKF logo Why am I not surprised at how much this looks like the list for healthy kidneys?

I was just thinking: what better day to start working on this list than Labor Day?

Until next week,

Keep living your life!

 

 

The Nutrition Action Health Letter Article

I am now officially excited.  I’d been getting some comments about this article which I thought wasn’t being published until September. I wondered why. It was my mistake. The article was to appear in the September issue, which I didn’t realize is published before the month begins.

The Center for Science in the Public Interest’s September Nutrition Action Health Letter is out… and younutrition can read it online, too. The URL is http://www.nutritionaction.com/wp-content/uploads/cover-Kidney-Check-How-to-Keep-Yours-Going-Strong.pdf. Many thanks to Bonnie Liebman for such a fine job of reporting and aiding in spreading Chronic Kidney Disease Awareness. It’s long, six pages, so what we have here are excerpts.

 

David White“I didn’t know that I had end-stage renal disease until I was admitted to the hospital in 2009,” says David White, who was then in his mid-40s. “A few days later, I stopped producing urine.”

Doctors told White that he had crashed. “It was scary,” he says. “I went from ‘Something may be wrong’ to ‘Oh my god am I going to die?’ to ‘I have to spend the rest of my life on dialysis.’”

And with four hours of dialysis three times a week, he never felt great.

“People call it the dialysis hangover,” says White, from Temple Hills, Maryland. “You’re so tired that you want to sleep all day after dialysis and most of the following day. And then you gear up for the next treatment.”

And White struggled with his one-quart-a-day limit on fluids. “When you drink too much, moving isn’t comfortable, laying down isn’t comfortable,” he says. “It’s hard to breathe.”

For Gail Rae-Garwood, the news about her kidneys came when she switched to a new doctor closer to herNutrition home in Glendale, Arizona.

“She decided that as a new patient, I should have all new tests,” says Rae-Garwood, now 69. “When the results came in, she got me an appointment with a nephrologist the next day. When you get an appointment with a specialist the next day, you know something is not right.”

Rae-Garwood had chronic kidney disease. “My GFR was down to 39, and apparently had been low for quite a while,” she says. (Your GFR, or glomerular filtration rate, is the rate at which your kidneys filter your blood.) “‘What is chronic kidney disease and how did I get it?’ I demanded,” recalls Rae-Garwood.

Every 30 minutes, your kidneys filter all the blood in your body. Without at least one, you need dialysis or a transplant. Yet most people have no idea how well their kidneys are working. “It’s very common for people to have no idea that they have early chronic kidney disease,” says Alex Chang, a nephrologist at Geisinger Health System in Danville, Pennsylvania.

A routine blood test sent to a major lab—like Quest or LabCorp—typically includes your GFR. If it doesn’t, your doctor can calculate it.

kidney function“A GFR is pretty routine for anyone who has blood work done,” says Chang. “But if you have very mild kidney disease, and especially if you’re older, a doctor might not mention it since kidney function tends to decline as you age.”

Doctors also look for kidney disease by testing your urine for a protein called albumin …. “That’s usually only done if you have high blood pressure or diabetes or some risk factor for kidney disease other than age,” says Chang.

Rae-Garwood’s previous doctor missed that memo. “I had been on medication for high blood pressure for decades,” she explains. “I wonder how much more of my kidney function I could have preserved if I’d known about it earlier.”

***

David White had kidney transplant in 2015. “It’s given me my life back,” he says. “No more dialysis.”

He takes anti-rejection drugs and steroids, and, like Rae-Garwood, he gets exercise and has to watch what he eats.

“I’ve changed my diet radically,” says Rae-Garwood. “I have to limit the three P’s—protein, potassium, What is itand phosphorus. I’m restricted to 5 ounces of protein a day. We have no red meat in the house. Any product above 7 or 8 percent of a day’s worth of sodium I don’t buy.

“And you know what? It’s fine. It’s been nine years now, and I’ve been able to keep my GFR around 50.”

Both patients are now advocates for preventing kidney disease. “I’ve written four books and almost 400 weekly blogs, and I post a daily fact about chronic kidney disease on Facebook,” says Rae-Garwood. White chairs the the MidAtlantic Renal Coalition’s patient advisory committee, among other things among other things.

“Get tested,” urges Rae-Garwood. “Millions of people have chronic kidney disease and don’t even know it. All it takes is a blood and urine test.”

My hope is that as a result of this article, more libraries, medical schools, and nephrology practices will IMG_2982order copies of What Is It and How Did I Get It? Early Stage Chronic Kidney FullSizeRender (3)Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, and SlowItDownCKD 2015. If you have a Kindle, Amazon has two wonderful low cost or free programs that may make it easier for you, your loved ones, and anyone you think could benefit from these books to read them.

This is how Amazon explains these programs:

“Kindle Unlimited is a subscription program for readers that allows them to read as many books as they want. The Kindle Owners’ Lending Library is a collection of books that Amazon Prime members who own a Kindle can choose one book from each month with no due dates.”

Barnes and Noble doesn’t have any such programs, but they do offer discount deals daily, which you can use to purchase any book.IMG_2980

I urge you to help spread awareness of Chronic Kidney Disease in any way you can. Here’s another quote from the article that may help you understand why:

“One out of ten adults have chronic kidney disease. Most don’t know it because early on, kidney disease has no symptoms. And because the risk rises as you age, roughly one out of two people aged 30 to 64 are likely to get the disease during their lives….”

Until next week,

Keep living your life!

Clogged Up?

That’s a good question and one I received from a reader just recently. Only this time, it doesn’t have to do with your nose or chest during a cold or the flu, but rather with cholesterol in your blood vessels.

For some of us, this is basic information, but for others… well, let’s just say we never bothered to find out about our cholesterol. After all, our doctors were managing this for us, weren’t they?

Ehhh, not my way. I like to be fully informed about what’s happening inside my body where I can’t see it. Let’s make that ‘especially where I can’t see it.’

What is itLet’s start with the basics from What Is It and How Did I Get It? Early Stage Chronic Early Disease.  This is the definition of cholesterol offered there:

While the basis for both sex hormones and bile, can cause blockages if it accumulates in the lining of a blood vessel.

If that doesn’t ring a bell, here’s the definition of Dyslipidemia:

Abnormal levels of cholesterol, triglyceride or both

Now we know there’s a normal and an abnormal level of cholesterol and that can’t be good.  So? Is that a big deal?

It is if you have Chronic Kidney Disease.  Dr. Joseph Vassalotti of The National Kidney Foundation explained it to reporter Jane Brody in an interview which is included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.DIGITAL_BOOK_THUMBNAIL

Good  control  of  blood  sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function.

I repeat, “…can delay the loss of kidney function.” That has been your ultimate goal since you were diagnosed, hasn’t it?

You may become confused by the three different kinds of cholesterol readings when you see the results of your blood tests.  I know I was, so I researched them and then wrote about them in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

Digital Cover Part 2 redone - Copy HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol.  VDL is Low Density Lipoprotein or the ‘bad’ kind that can clog your arteries. VLDL is Very Low Density Lipoprotein and one of the bad guys, too. It contains more triglycerides than protein and is big on clogging those arteries.

Wait a minute. Where did triglycerides come into this? According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/triglycerides/ART-20048186

Triglycerides and cholesterol are separate types of lipids that circulate in your blood. Triglycerides store unused calories and provide your body with energy, and cholesterol is used to build cells and certain hormones. Because triglycerides and cholesterol can’t dissolve in blood, they circulate throughout your body with the help of proteins that transport the lipids (lipoproteins).

Still with me?  Good, because you can do something about this.

cholestero

Sometimes, it’s as simple as lifestyle changes like adjusting your diet. While I don’t agree with all of this advice, DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/lowering-cholesterol-with-chronic-kidney-disease/e/5304 can get you started.

  •  Avoid foods high in saturated fat and cholesterol such as whole milk, cheese and fat from meat.
  • Bake, grill, broil and roast your poultry, fish and meat. Choose lean cuts of meat and trim off any fat.
  • Eggs are an excellent source of protein, but the yolks are high in cholesterol. Try egg substitutes like Egg Beaters® or Scramblers®, or substitute two egg whites for a whole egg.
  • Eat at least two servings of fish every week. Salmon, tuna, herring and trout contain good amounts of omega-3 fatty acids that lower your risk of heart disease.
  • Try spreads like Benecol® or Take Control® in place of butter or margarine. Plant sterols and stanols in these spreads help lower cholesterol levels.
  • Choose oils that are high in mono- and polyunsaturated fats: canola, olive, peanut, corn, safflower, soybean and sunflower.
  • Read food labels and try to eliminate foods with trans-fats (found in hydrogenated oils, margarine and many commercially prepared snack foods).
  • Eat kidney-friendly fruits and vegetables.water melon

Of course, if you’re diabetic or prediabetic, you need to modify these suggestions for your diet.  Last week’s blog may help with that.

Exercise will help, too. This is from Everyday Health at http://www.everydayhealth.com/high-cholesterol/fitness-and-cholesterol.aspx   and will give you an idea of how to start… just in case exercise is not in your vocabulary at this time.

       Try these exercise options to help shed pounds and manage high cholesterol:

  • Walking
  • Jogging or running
  • Swimming
  • Taking an aerobics class
  • Biking
  • Playing tennis, basketball, or other sports
  • Using weight machines or lifting free weights to build muscle tone

water walkingPlay around with the list. For example, I am not a water person and simply will not swim, although I’ve been known to water walk at the drop of a hat.  I love to walk and do as much as I can whenever I can.  Of course this is not a complete list.  Consider it a nudge to get started.

If life style changes don’t work for you, your doctor may prescribe a statin.  The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/statin defines this as

 any of a group of drugs (as lovastatin and simvastatin) that inhibit the synthesis of cholesterol and promote the production of LDL-binding receptors in the liver resulting in a usually marked decrease in the level of LDL and a modest increase in the level of HDL circulating in blood plasma

There are substantial arguments against taking statins, but there are also substantial arguments for taking them.  This is something you have to discuss with your doctors since you have a unique medical condition. Is the risk of kidney failure or heart attack so great that you need the drug?  You might want to consider it then. But if it is being prescribed because “That’s protocol,” I would urge a serious heart to heart (good choice of words here) with the prescribing doctor or maybe even a second opinion.

4wedding

I hope you’ve enjoyed your cholesterol primer while I’m on my second attempt at a delayed honeymoon and busily avoiding all those goodies that are just plain bad for my cholesterol levels.

Until next week,

Enjoy your life!

Sexy!

IMG_2867Sometimes as you age, you find that sex is not that important… or, at least, the hanging from the chandeliers kind isn’t. *sigh* Add to the age factor that you and/or your partner may have physical limitations or be taking medication that impedes indulging as often and as fervently as you used to. *sigh*sigh* Now add your Chronic Kidney Disease to this equation. *sigh*sigh*sigh*

Does this mean you’re doomed to a life of fervent hugging and kissing and no more? Not at all, my friends, not at all.

Let’s take a look at what I had to say (oh, all right, write) about the glorious, yet somehow still taboo, topic of sex for CKD patients. Those of you Book Coverwith a print copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will find this begins on page 100. If you have the digital version, do a word search for ‘sex.’ It’ll be the third finding on the search.

I haven’t found too much about sex that’s different from the problems of non-CKD patients although with this disease there may be a lower sex drive accompanied by a loss of libido and an inability to ejaculate.  Usually, these problems start with an inability to keep an erection as long as usual.  The resulting impotency has a valid physical, psychological or psycho-physical cause.

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body.  Or maybe it’s leaky blood vessels.  Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones. Possibly, you’re tired from CKD induced anemia.  I’ve just mentioned a few possibilities. The silver lining is that there are almost as many treatments as there are causes.

While E.D. can be caused by renal disease, it can also be caused by diabetes and hypertension. All three are of importance to CKD patients. Sometimes, E.D. is caused by the medications for hypertension, depression and anxiety.  But, E.D. can also be caused by other diseases, injuries, surgeries, prostate cancer or a host of other conditions and bodily malfunctions. Psychologically, the problem may be caused by stress, low self-esteem, even guilt to name just a few of the possible causes.

blood pressure 300dpi jpgThe usual remedies for E.D. can be used with CKD patients, too, but you need to make certain your urologist and your nephrologists work together, especially if your treatment involves changing medications, hormone replacement therapy or an oral medication like Viagra. There are other treatments not mentioned here….

Sometimes, the treatment is as simple as counseling and the cessation of smoking and alcohol.  Hmmmm, as CKD patients, we’ve already been advised to stop smoking and drinking.  This is another reason for male CKD patients to do so.

Women with CKD may also suffer from sexual problems, but the causes can be complicated.  As with men, renal disease, diabetes and hypertension may contribute to the problem.  But so can poor body image, low self-esteem, depression, stress and sexual abuse [It’s become clear since the book was published in 2011 that men also may suffer from these conditions]. Any chronic disease can make a man or a woman feel less sexual.

Some remedies for women are the same as those for men.  I discovered through my research that vaginal lubricants and technique, routine, and environment changes when making love, warm baths, massage, and vibrators can help. Again, there are other, more medical treatments.

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed.  I was obsessed with my [e.g. premature and unnecessary] revulsion of dialysis and needed to hear over and over again that it was a couple of decades too early to worry about this.  I was also tired and didn’t know why, just worried that I would always need an afternoon rest period.… Then I discovered that vaginal strep B can occur in women over 60 with CKD.  Luckily for me, if you catch it and treat it early on, it’s just an infection that you take antibiotics to kill.  If you don’t treat it early, you just may be looking at some serious consequences.

Since we’re in the early stages of CKD, chances are the sexual problem is not physical other than being tired.  I never talked to my nephrologist about sex because I felt there was no reason to, and I had a partner who was willing to work around my rest periods until I had the energy.  But, I sleepam convinced, that if I ever do feel I have reason, I would talk to him. I’m older and prefer women doctors for the most part especially when it comes to private matters but this man is the specialist who knows far more than I do about this disease I am struggling to prevent from progressing.  There is a point when you realize your life is more important than not being embarrassed.

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too.  And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful.  You’ve got to keep in mind that some CKD patients never have sexual problems, no change in frequency and depth of desire and no impairment in the act itself.  This is not the time to make yourself the textbook case of the CKD patient who suffers sexually because of her disease. The best advice I received in this area was make love even if you don’t want to.  Magic.

I wrote that five years ago and very little has changed. You’ll see that I added an update in brackets and omitted outdated information.  Otherwise, my advice is the same.  But keep in mind that I am not a doctor and have never claimed to be one. Speak to your nephrologist if you feel your sex life is being hampered by your CKD.

Check The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 to see if they have more information about sex and our disease.IMG_1398

Wow!  I keep the blog to about 1,000 words and I’m already over.  It’s just as well, we’re off to find some delicious candles and add some sexy music to the iPod… just in case we’re in the mood sometime soon, you understand.

Until next week,

Keep living your life!

Sticking It to Myself

First of all, thanks for your patience in the blog host debacle.  Just goes to show you don’t miss your water until the well runs dry.  Translated that means I love WordPress as the blog host and will not be making any changes from here EVER!  Further translated that means the name of the blog will always be SlowItDownCKD and we’ll always be at https://gailraegarwood.wordpress.com. I do believe I’ve just apologized.  I seem to be doing that a lot this week.

National Kidney MonthHappy third week of National Kidney Month. Seems so odd to place ‘Happy’ and ‘National Kidney Month’ in the same sentence.  Yet, it makes sense. How can we spread awareness of Chronic Kidney Disease if we don’t have a national effort? Hmmm, that sort of makes it happy.

Okay, down to brass tacks (or sharp jabs) now. During the first week of National Kidney Month, my PCP decided it was time to deal with my consistently high A1C test results.  Good timing on her part, huh?

Let’s go back just a bit to remind everyone what the A1C test is for. On page 54 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote the following.

Somewhere along the line, one of your doctors may order an A1C test.  This measures how well your blood sugar has been regulated for the two or three months before the test.  That’s possible because the glucose adheres to the red blood cells.  This is important since quite a few CKD patients develop the disease from diabetes.Book Cover

Ah, so she’s trying to help prevent me from developing diabetes. That is the number one cause of CKD.  But I already have CKD.  Let’s see why it’s important for those with CKD to avoid diabetes, too.

I went directly to The National Kidney Foundation at https://www.kidney.org/atoz/content/diabetes for information.

With diabetes, the small blood vessels in the body are injured. When the blood vessels in the kidneys are injured, your kidneys cannot clean your blood properly. Your body will retain more water and salt than it should, which can result in weight gain and ankle swelling. You may have protein in your urine. Also, waste materials will build up in your blood.

bladderDiabetes also may cause damage to nerves in your body. This can cause difficulty in emptying your bladder. The pressure resulting from your full bladder can back up and injure the kidneys. Also, if urine remains in your bladder for a long time, you can develop an infection from the rapid growth of bacteria in urine that has a high sugar level.

Oh no!  I already have kidney damage. Now I could be exacerbating it. Wait a minute.  How is this happening?  I exercise, watch my renal diet, try to avoid stress, and get enough sleep.  Am I doing something wrong?

In type 2 diabetes, your body does not use insulin properly. This is called insulin resistance. At first, the pancreas makes extra insulin to make up for it. But, over time your pancreas isn’t able to keep up and can’t make enough insulin to keep your blood glucose levels normal. Type 2 is treated it with lifestyle changes, oral medications (pills), and insulin.pancreas

This is from the American Diabetes Association at http://www.diabetes.org/diabetes-basics/type-2/facts-about-type-2.html  A little clarification here: type 1 is the one in which people don’t produce insulin and type 2 is when the body is insulin resistant.

Wow. Just wow.  What’s tickling my mind now is the latest information I’ve read about statins possibly resulting in type 2 diabetes by affecting insulin resistance in a negative way.  Don’t get excited just yet.  Nothing’s been verified and I’m not even sure I understand the research.

All right, jabs next.  Since this is all new to me, I was told to check my blood sugar daily.  I looked dumbly at my PCP.  She caught the look and explained I could get my supplies at the pharmacy and sent over a script.  After four days of running around after my insurance, it was determined Medicare would not pay for the supplies since I didn’t actually have diabetes.  If Medicare doesn’t cover it, my secondary insurance doesn’t. So, I paid out of pocket.diabetes equipment

Off I went to the pharmacy, where the pharmacist explained what I would need. I looked dumbly at my pharmacist.  He caught the look and offered to get the supplies for me.  I’m sure he meant well, but he gave me the pharmacy brand meter which means I can only use their test strips.  It’s sort of a forced income for them.  He also gave me lancets (I used to think that was just the name of an English medical journal. Silly me.), but they weren’t ultra-thin and they hurt.  What he didn’t give me was the lancet device.  I didn’t know that existed until the diabetes counselor provided by my PCP told me about it.

I suspect I over checked because my fingertips are black and blue.  However 2 hours after eating is the norm.  I just took a break and monitored my blood glucose. It’s 121.  While that’s low for me, normal is in the 70-110 range, so even though I took 500 mg. of Metformin this morning, I’m going to have to exercise when I’m done (Doesn’t scare me; I have to exercise for the CKD anyway.) to lower that number.

I can see I’ll be blogging about this again. There is so much to cover here!Part 2

Digital Cover Part 1I keep forgetting to ask.  Would those who you who have read The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and/or The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 please write a review on Amazon.com. I am interested to hear what you think of these books.

Did you know you can register for the Phoenix Kidney Walk all the way up until that morning, April 19th?  If you’re going to register, why not join Team SlowItDownCKD?  Here’s a link to make that easy: kidneywalk.kintera.org.

Until next week,

Keep living your life.

They’re Not Twins

Kidney ArizonaMarch is National Kidney Month here in the United States.  That makes it an even better time to have yourself screened for Chronic Kidney Disease. 28 million people have it and quite a few of them don’t know it.  Don’t be one of them.  All it takes is a simple blood test and a simple urine test.

Talking about blood and urine tests, I mentioned in passing on one or two of my blogs that your values and the reference range values on your lab tests may differ according to the lab you use, and loads of physical factors such as: being adequately hydrated, having voided your bladder, having gotten enough sleep, even how the specimens were handled.

I was in the unique position of taking these two tests once and then again two weeks later. Had the due date of the tests for each doctor been closer, I might have combined them and had the results of the one set of tests sent to each doctor. But my nephrologist needed his tests two weeks before my appointment, and my primary care physician {pcp} needed hers no less and no more than every three months since she was monitoring my bmpliver for the effect of a medication.

She was checking primarily for my cholesterol levels {which are better than ever and finally all within range, thank you very much!} and included the other tests because she is one thorough doctor. He, my nephrologist, was much more concerned with my kidney function.

The reference range values from the two different labs I used were not twins. For example, Sonora Quest, the lab my nephrologist uses, has the acceptable range for creatinine as 0.60 – 1.40.  But my pcp uses LabCorp. which states that it is 0.57 – 1.00 mg/dL. If you look to the right, you’ll see an older test result using mg/dL.

I wasn’t really sure what mg/dL meant, so I looked it up. According to the Free Dictionary at http://acronyms.thefreedictionary.com/mg%2fdL, this means

Milligrams per Deciliter

That was my reaction, too, so I used the same dictionary for both words used in the definition.  Milligrams means

A unit of mass equal to one thousandth (10-3) of a gram

while deciliter means

100 cubic centimeters

We are talking small here!Book Cover

The results for this test were a little different, too.  On February 10th, it was 1.11, which was not out of range for Sonora Quest.  But two weeks later, it was 1.1 – ever so slightly lower – which was out of range for LabCorp. This is a bit confusing.

Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see if we can shed some light on this. On page 21 {Use the word search if you’re using the digital version of the book.}, I wrote

A higher creatinine result could mean the kidneys were not adequately filtering this element from the blood.

By the way,

Creatinine is a chemical waste product that’s produced by your muscle metabolism and to a smaller extent by eating meat.

Thank you to The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/creatinine/basics/definition/prc-20014534 for this clarification.

All I can say is that seemed like earth shattering information when I was first diagnosed with CKD.  Now that it’s seven years late, it just means I have CKD.  It’s sort of like reiterating I have this slow decline in the deterioration of my kidney function no matter which acceptable range we use.

Another difference in value ranges was BUN.  This is your urea nitrogen. Medline Plus at blood drawhttp://www.nlm.nih.gov/medlineplus/ency/article/003474.htm explains

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.

This could be a ‘Who cares?’  statement except that the BUN is used to measure your kidney health. Sonora Quest’s acceptable range is 8-25 mg/dL, while my LabCorp’s is 8-27. At the first lab, my value was 22 and at the other, two weeks later, it was 17. Both were in range, but let’s say – just for argument’s sake – my value had been 26.  Would that mean I was out of range?  It would at one lab, but not the other.  I think I just answered my own question as to why I need to have my doctor interpret my lab results even though I can read them myself.

Well, what makes these levels go up or down? Thank you WebMD for this simple to understand answer.

If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher. Liver disease or damage can lower your BUN level. A low BUN level can occur normally in the second or third trimester of pregnancy.

Aha!  We know that as CKD patients we are restricted to five ounces of protein a day. Why combine an inability to “remove urea from the blood normally” with an overabundance of protein?

Hopefully, some of the questions you didn’t even know you had were answered today.

Part 2I’m sorry if you missed out on your free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  by being the third buyer during the last part of February. While I’ve used up my freebies for that book, I’m now working on a free day for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 on World Kidney Day, March 12.  Keep watching for more news about this as Amazon and I keep working on it.

Again, if you’d like to join us for the Kidney Walk on April 19 at Chase Stadium in Phoenix, why not go to the Walk’s website at http://kidneywalk.kintera.org/faf/home/default.asp?ievent=1125145 and join our team, Team SlowItDown. We’ll be looking forward to seeing you there.

Until next week,

Keep living your life!

Metabolic Syndrome doesn’t Sit Well with Me

I have been dismayed by this spare tire around my middle for a while.  I looked around and noticed some of my female friends have it, too.  For some reason, I didn’t look at my men friends’ middles.tire

Was it a post-menopausal thing? No, not with these young women friends having it, too.  So I asked and more than one told me she had Diabetes.

Whatever could that have to do with my spare tire, I wondered.  I may be pre-diabetic, but I don’t have diabetes.  No, I think it’s something else.  So I researched and found I’d been in denial about having (self-diagnosed) Metabolic Syndrome. Certainly I’ll speak with my primary care physician, but meanwhile I decided to tell you about it.

Did you know that one out of every three United States citizens and Canadian citizens suffer from Metabolic Syndrome?  While the title sounds exotic, it’s not. Okay, with those kinds of numbers, this isn’t a case of Metabolic Syndrome being the disease – or syndrome – of the day.  You know, when all of a sudden, everyone you know thinks (s)he has whatever it is… like me.

Okay, so what is it? This is what the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/metabolic-syndrome/basics/definition/con-20027243 had to say about it:

“Metabolic syndrome is a cluster of conditions — increased blood pressure, a high blood sugar level, excess body fat around the waist and abnormal cholesterol levels — that occur together, increasing your risk of heart disease, stroke and diabetes.”

Busted!  On my August blood draw report, my blood sugar level was high at 6.2 via the A1C.  That’s what it’s been for a year. Normal is between 4.8 and 5.6. A reading of 5.7 – 6.4 indicates increased risk for diabetes.  Just in case you don’t remember, the Hemoglobin A1C measures how well your body handles blood sugar over a three month period. This is important for Chronic Kidney Disease patients because, as defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease (page 132 for those with the book), hemoglobin:

“Transports oxygen in the blood via red blood cells and give the red blood cells their color.”Book Cover

Awk!  I almost, but not quite, hesitated to check just how abnormal my cholesterol level was and for how long. I snuck at a quite peek at my book (page 130) before I did that just to be sure I knew what I was checking. The definition of cholesterol was:

“While the basis for both sex hormones and bile, can cause blockages if it accumulated in the lining of a blood vessel.”

So cholesterol is a good thing unless there’s a buildup.  Wait a minute; I need a refresher about bile.

MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/002237.htm cleared this up for me:

“Bile is a fluid that is made and released by the liver and stored in the gallbladder.

Bile helps with digestion. It breaks down fats into fatty acids, which can be taken into the body by the digestive tract.”

My latest cholesterol reading (with medication to keep it low) for Total Cholesterol were in range (100 – 199) at 165, as were my HDL Cholesterol reading at 49 (greater than 39 is acceptable), my VLDL Cholesterol reading at 23 (5-40 is considered normal), and my LDL Cholesterol reading (anywhere from 0 – 99 is normal).

Let’s backtrack just a bit.  HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol.  VDL is Low Density Lipoprotein or the ‘bad’ kind that can clog your arteries. VLDL is Very Low Density Lipoprotein and one of the bad guys, too. It contains more triglycerides than protein and is big on clogging those arteries.

Hmmm, this is part of Metabolic Syndrome, but I didn’t have it.  Did I ever have a cholesterol problem?  I looked back over the past year and noticed my Total Cholesterol had been out of whack by a point or two once or twice.

blood pressure 300dpi jpgWhat about increased blood pressure?  Well, I do have Chronic Kidney Disease and usually ran about 130/80.  The 130 was the systolic part of the reading; it measured the pressure when the heart is beating.  The lower part of the reading, or diastolic (the 80 in my case) was when the heart was at rest between beats. A normal blood pressure for a person my age (67) with CKD according to the new Eighth Joint National Committee is 150/90. Uh-oh, that’s under control, too.

Having both your cholesterol and your blood pressure under control were good things, and in this case, they pointed out the folly of self-diagnose.  Mea culpa!

By the way, this was important for CKD patients because we’re already at risk for heart disease simply by being CKD patients.  Why add to that risk with hypertension (high blood pressure) and/or hyperlipidemia (high cholesterol)?

Okay, so I didn’t have Metabolic Syndrome despite the spare tire I carried. But maybe you do.  Let’s see what you can do about it.

According to MedicineNet at http://www.medicinenet.com/metabolic_syndrome/page4.htm#what_is_the_treatment_for_metabolic_syndrome, the treatment is – you guessed it – diet, exercise, and no smoking.  Medication is used if the syndrome is severe enough, but life style changes are the first line of treatment.

Tonight, my brother and sister-in-law arrive from Florida.  By the time I blog next week, we will have spent time in Prescott, Sedona, and Jerome.  For those of you who don’t know these cities in Arizona, each has its own, distinct personality.  We will also have had an early birthday party for my brother so they can meet my family here, all the step-daughters and almost son-in-laws.  Ladies and gentlemen: this is the best medicine for whatever bothers me.firworks

I am so excited I almost forgot to tell you about the book.  I want to make sure none of you students is renting it for a semester.  Even if you don’t use Amazon’s Kindle Match Book Program, buying the book is LESS EXPENSIVE than renting it, especially the digital copy.  I’m sorry if you’ve been duped into renting.  Periodically I write reminders in the blog about this.

Until next week,

Keep living your life!

Book It!

With the holidays over and more time to think about what I’d like to write, I decided this would be a good time to update you about whatever other books are available that also concern Chronic Kidney Disease.

You know there are many out there, too many to mention here, so I eliminated any book that couldn’t be understood by a lay person (those without specific training in a certain field – in this case, medical) and renal diet books.  You can easily find those for yourself by going to Amazon.com and B&N.com. I also excluded those I found to be dubious… the spelling errors were a dead give-away that these were not professional.

I’m not going to tell you about What Is It And How Did I Get It? Early Stage Chronic Kidney Disease since you already know about it from this blog.  Let’s change that, I will tell you one or two things.  First, the books included in ‘Additional Resources’ (Chapter 13) won’t appear here, as good as they are.Book Cover

And – pay attention – students, be aware that both Campus Book Rentals and Chegg are attempting to rent the book to you for more than it costs to buy it.  The digital edition – when I was teaching college, my students always seemed to prefer the digital edition – is even less expensive.

Don’t forget about The KindleMatchBook program which allows you to buy the digital version at 70% discount if you’ve ever bought the print copy. Gather your classmates: pool your money so you can save. One of you buy the print edition, then the others can get the digital edition at deep discount (I have no idea why, but I love that phrase).

Disclaimer:  I am not a doctor, have never have claimed to be one , AND am not endorsing the following books, simply letting you know they exist. For the most part, the descriptions were written by the author. The ‘Look Inside!’ function only works if you follow the link to Amazon.com – sorry! I have been dreaming about this list, so let’s get it out of my dreams and on the blog:

510smylYevL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Ford, Mathea A., RD (Registered Dietician) Kidney Disease: Common Labs and Medical Terminology: The Patient’s Perspective (Renal Diet HQ IQ Pre-Dialysis Living) (Volume 4)

New to kidney failure? Have no idea what your physician just said about your kidneys? Kidney disease labs and terminology can quite often be a challenge to understand and digest. Did your doctor use the “stages of kidney disease”? Did you physician refer to “eGFR”? What does all this mean for your health and future with kidney disease, lifestyle and nutrition choices. This book is the basic platform for understanding all the common labs and terminology that your doctors and nurses will use. This book with give you and your caregivers the confidence to manage your condition knowing that you have an understanding of all the ins and outs of the nephrology jargon. (Mrs. Mathea seems to have an entire series of books about CKD.)

Hunt, Walter A. Kidney Disease: A Guide for Living. 

When Hunt learned he had kidney disease, he was overwhelmed by the prospect of facing kidney failure. He had so many questions: Why are my kidneys failing? Is there anything I can do to save them? How will I know when my kidneys have failed? What will it feel like? 41nNk5SdqIL._AA160_What treatments are available for me? Is there a cure for kidney failure? The good news, as Hunt found out, is that kidney failure is highly treatable. People with the disease can lead full and productive lives, and Hunt’s readable and empathetic book will help them do just that. It discusses the latest scientific and medical findings about kidney disease, including what kidneys do; the underlying diseases that cause failure; diagnosis, treatment, and prevention; dietary factors; clinical trials; and the future direction of research on kidney failure. Kidney disease is difficult, but as Hunt’s narrative reveals, people living with it can take control of their health and their future. By understanding kidney failure — what causes it, how it may affect their lives, and what treatment options they have — people with the disease can improve their quality of life and achieve the best possible outcome.

51nUIkG8kSL._AA160_Lewis, Dr. Robert. Understanding Chronic Kidney Disease: A guide for the Non-Specialist.

This is meant for primary care physicians, but can be easily understood by the layman. I looked under the covers of this one and was delighted to see that the information we, as patients with CKD, need to know is also what our primary care physicians need to know. (I wrote this description.)

National Kidney Foundation of Southern California. Living Well With Kidney Disease.

The first edition of “Living Well With Kidney Disease” was developed and published by the National Kidney Foundation of Southern California. Based on the handbook “When Your Kidneys Fail” (originally published in 1982), this new and 41jxZoYLGzL._AA160_updated edition provides detailed information specifically intended for people coping with Kidney Disease and other renal failure, as well as their friends and families. The question and answer format provides a clear and manageable guide for those seeking support and answers. Among the topics covered are the principles of kidney function, methods of treatment, transplantation, and financial resources available to patients. With all of the ramifications of kidney failure and the rise of Chronic Kidney Disease and Type 2 Diabetes, there is a growing population of people afflicted with kidney failure. Although it was written with the patient in mind, family members, friends and health care professionals will also find this handbook a valuable resource.

517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Synder, Rich DO (Doctor of Osteopathic Medicine) What You Must Know About Kidney Disease: A Practical Guide to Using Conventional and Complementary Treatments

The book is divided into three parts. Part One provides an overview of the kidneys’ structure and function, as well as common kidney disorders. It also guides you in asking your doctor questions that will help you better understand both status and prognosis. Part Two examines kidney problems and their conventional treatments. Part Three provides an in depth look at the most effective complementary treatments, from lifestyle changes to alternative healing methods. The diagnosis of kidney disease is the first step of an unexpected journey.

*Yes, this is the same Dr. Rich Snyder who interviewed me on his radio show twice since What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published.

It’s always hard to find good books about CKD that non-medical personnel can understand.  I hope this four (and mine!) help you feel more comfortable and knowledgeable about your diagnosis.

Here’s a little hint about your own health.  I’m back to no sweets or desserts and, I hate to admit it, but I’m feeling better.  Don’t you just hate when that happens?sugar

Until next week (when I’ll in in Culver City for a weekend of Landmark),

Keep living your life!

Statins: No Easy Decision Here

A reader asked me to write about this topic.  Like me, she is a woman in her middle sixties who takes statins.  Unlike me, she has had adverse side effects.  Who even remembered about these?

Of course, I read the information handout the pharmacy attaches to the bag containing your prescription.  Of course, I researched this drug on the internet when it was first prescribed for me. But that was years ago and, while I periodically re-read the pharmacy’s handout, the dangers of this drug never quite resonated with me.

Dangers?  With statins?  That’s most people’s reaction.statins

Let’s go back to the beginning with an explanation of what statins are and what they do. According to MedicineNet.com at http://www.medicinenet.com/statins/article.htm,

“’Statins’ is a class of drugs that lowers the level of cholesterol in the blood by reducing the production of cholesterol by the liver. (The other source of cholesterol in the blood is dietary cholesterol.) Statins block the enzyme in the liver that is responsible for making cholesterol.”

Makes sense.  But what’s cholesterol? Medical News Today at http://www.medicalnewstoday.com/articles/9152.php tells us,

“Cholesterol is a lipid (fat) which is produced by the liver. Cholesterol is vital for normal body function. Every cell in our body has cholesterol in its outer layer.”

Okay, so we need this particular lipid but sometimes – between the foods we eat and our body’s functioning – we produce too much of it. Then it may stick to our arteries as plaque, possibly narrowing or even blocking them.  This could lead to CAD or coronary artery disease (heart problems).

liverHere’s the important part for Chronic Kidney Disease sufferers: it’s the liver – the organ that produces cholesterol – that is affected by the statins. That’s the only other filtering system your body has and your kidneys are already compromised.  TWO compromised filtering systems seems like a really poor idea to me.  Yet, sometimes, we need to take statins.

I went to my favorite, The Mayo Clinic, at http://www.mayoclinic.com/health/statins/CL00010 for information about when you need to be on a statin:

“If you have high cholesterol, meaning your total cholesterol level is 240 milligrams per deciliter (mg/dL) (6.22 millimoles per liter, or mmol/L) or higher, or your low-density lipoprotein cholesterol (LDL, or “bad” cholesterol) level is 130 mg/dL (3.37 mmol/L) or higher, your doctor may recommend you begin to take a statin. But the numbers alone won’t tell you or your doctor the whole story.

If the only risk factor you have is high cholesterol, you may not need medication because your risk of heart attack and stroke could otherwise be low. High cholesterol is only one of a number of risk factors for heart attack and stroke. “

As CKD patients, we already have another risk factor.  If, like me, those numbers mystify you, you can find them on your quarterly blood test reports which will usually have an “H” to indicate high or “L” to indicate low (You won’t find that if you’re on statins.) next to the numbers for your total cholesterol and your low-density lipoprotein levels.

As for how hyperlipidemia (high cholesterol) can affect your body and why statins are prescribed, I took a look at a non-technical explanation at  http://heartdisease.about.com/cs/cholesterol/a/statins.htm:

“Clinical studies have shown that statins significantly reduce the risk of heart attack and death in patients with proven coronary artery disease (CAD), and can also reduce cardiac events in patients with high cholesterol levels who are at increased risk for heart disease. While best known as drugs that lower cholesterol, statins have several other beneficial effects that may also improve cardiac risk, and that may turn out to be even more important than their cholesterol-reducing properties.”

Well, that all sounds good so what’s the problem?  It’s the side effects, ladies and gentlemen.  It’s all the ‘may cause’ that you find on the websites and in your pharmacy handout information.confused

I went to a new site for me, http://statinseffects.org/, and was staggered by the side effects:

“The risk of liver & kidney damage, muscle damage, increased risk of cancer & other side effects of cholesterol lowering drugs are good reason why exercise & diet should be patient’s first resort for controlling cholesterol levels. For people who must take cholesterol lowering medications, the dose needs to be reduced to minimum by again exercise & diet. The main concern seems to be the overuse or underuse of the medication, despite of the evidence that high cholesterol level itself is not the most important factor of heart disease. It is, however, the ratio between total & HDL cholesterol levels.”

You KNOW what popped out at me: kidney damage.  We already have kidney damage.  Each of these side effects deserves a blog of its own.  But, it is important to remember that these are possible, not definite, side effects.

Am I endorsing statin use for hyperlipidemia? No, I’m not.  I’m not a doctor.  You need to discuss this with your doctor. Mine at the time of my diagnose with hyperlipidemia was amenable to my desire not to take the drugs for a while.

Dr. Susan Bennett, agreed to this in an attempt to demonstrate to me that I needed the medication.  This was about six years before I was diagnosed with CKD.  For three months – the acknowledged honeymoon period – my numbers were great.  And then they started to climb… and climb, despite the dietary changes and exercise.  I am just one of those unlucky ones with naturally high cholesterol. Try this for yourself if your doctor agrees, but keep your health foremost in your mind.exercising silhouette

Talking about that, SlowItDown held our first of ten monthly Chronic Kidney Disease education classes on The Salt River Pima – Maricopa Indian Community last Thursday. Talk about a gratifying experience!  In addition, the book is now being used by a spiritual healing and medical care group in the community.

Many thanks to Annette Folmer of DaVita for the ever higher quality of her teaching and to MaryAnn Bennett, the brand new Clinical Services Manager at Salt River Pima-Maricopa Indian Community. Our classroom was even more electronically modern than the ones I’ve taught in here in Arizona’s community colleges!

Until next week,

Keep living your life!Book Cover

Exercising My Options

According to a study published in Diabetes Care this past July, “Weight control through diet and exercise can prevent most cases of type 2 diabetes in American women over age 50…”  I am a woman.  I am an American. I am over the age of 50.  And I have chronic kidney disease which can be a cause of diabetes.  Therefore, I am also confused.  (One place to read about this study is http://www.drugs.com/news/weight-control-can-cut-women-s-diabetes-risk-study-shows-39516.html.)exercising

Why, you ask?  Easy, I’ve just finished reading Dr.Wes Fisher’s November 30th essay in Physician. In this essay, he makes a point in the form of a question: “What if, believe it or not, when it comes to people with Type II diabetes, diet and exercise don’t affect the incidence of heart attack, stroke, or hospital admission for angina or even the incidence of death?” Of course, the quote is taken out of context so you need to read the essay for yourself at: http://www.kevinmd.com/blog/2012/11/reconsider-benefits-exercise-weight-loss.html?utm_medium=twitter&utm_source=twitterfeed.

Okay, so my wildest dream of not having to exercise to avoid illness has finally come true.  Or has it?  I looked over the articles I’d saved about my nemesis. It was a lot easier to force myself to exercise four years ago than it is now.  My knees troubled me a bit then, but that was it. Now it’s the knees, right hip, feet, and shoulders.  I honestly do exercise, but it’s not half as much fun as it used to be. Sure enough, in the articles I’d saved, I ran right into a bunch of reasons to keep up the exercise.

“Statin therapy and physical fitness amounted to a one-two punch for lowering mortality risk in a large cohort of middle-age and older patients with dyslipidemia followed for 10 years.” Damn!  I have dyslipidemia (high cholesterol) and periodically need to pay closer attention to it.  According to this study originally printed in The Lancet, I need to keep exercising – if not to prevent myself from developing the horrors of Type II Diabetes possible outcomes, then to keep the dyslipidemia under control… and I need to keep watching my diet.  You can read the article via Medpage at: http://www.medpagetoday.com/PrimaryCare/GeneralPrimaryCare/36134?utm_source=share&utm_medium=mobile&utm_campaign=medpage%2Biphone%20app.

sore kneeWell, what about my knees and my other hurting parts that make me NOT want to exercise?  The best quote I found came from Dr. Candice Johnstone at the Radiological Society of North America’s press briefing this year when she spoke about exercising in moderation,

“I was not surprised by these results. This is more like common sense,” added Johnstone,

who is from the Medical College of Wisconsin in Milwaukee. “This adds to information

people have to use to design their own exercise program.”

The url for this article is: http://www.medpagetoday.com/MeetingCoverage/RSNA/36117?utm_source=share&utm_medium=mobile&utm_campaign=medpage%2Biphone%20app

Dr. Johnstone’s reference to common sense seems like… well, common sense.  If it hurts, don’t do it.  If you can do it with modification so that no pain is incurred, do it.  You try not to poke at a tooth that hurts, don’t you?  So why poke at a joint that hurts?

All right now, just one more article.  This one just about convinced me I should be happy about exercising. “Most weight loss occurs because of decreased caloric intake. However, evidence shows the only way to maintain weight loss is to be engaged in regular physical activity.” I can accept that.  But what was the convincing part of the article is this:

“Physical activity also helps to–

  • Maintain weight.
  • Reduce high blood pressure.
  • Reduce risk for type 2 diabetes, heart attack,      stroke, and several forms of cancer.
  • Reduce arthritis pain and associated disability.
  • Reduce risk for osteoporosis and falls.
  • Reduce symptoms of depression and anxiety. “

And this from my old friend, Centers for Disease Control and Prevention.  Read it for yourself at: http://www.cdc.gov/healthyweight/physical_activity/index.html?s_cid=tw_ob254

Now I remember why I started exercising.  I love life.  I love avoiding extra medication for ailments I could have handled with life style changes (sorry, Dr. Fisher). I love moving and feeling alive.dogandcatmainpage

Of course today’s blog leaves me thinking that I must continue to exercise.  Am I happy about that?  No, I can’t honestly say I am, but I will do so.  Who knows, maybe it’ll keep me healthy enough that I’ll live long enough to see grand-children instead of just grand-animals.

Announcing the winners of last week’s contest to find the most creative use of the useless garden tub in my master bathroom:

Advocator Peruza – a copy of the book is on its way to her now and it’s personally inscribed to her

Mimi Smiley – all I need is her information to send her a personally inscribed poster for the book

Nima Beckie – who entered just for the fun of it.

Thank you all!  Unfortunately, no one could come up with an answer to the question, “Why is this called a garden tub if it’s in the house?” so I’ll research that myself.

Until next week,

Keep living your life.

Blue Monday – But Only When It Comes To Sugar

If you read the Facebook page, you already know I received good news when I visited my primary care doctor, the ever educating Dr. H. Zhao of Deer Valley Family Practice here in Phoenix. The visit was for her to more carefully read the results of the blood tests than I am capable of since I’m not a doctor. I take these tests quarterly because I was prescribed Pravastatin which might have an effect on the liver.

By the way, pravastatin is used with hyperlipidemia (high cholesterol). Luckily for me, I have had no side effects from this drug.  As with every other patient taking the drug, it wasn’t even prescribed until after we had tried dietary changes, exercise and weight reduction.  My body seems to have a mind of its own (love the juxtaposition of body and mind), and paid no attention to any of my efforts; hence, the drug regimen.

That’s a pretty long involved explanation of why I was in Dr. Zhao’s office at all.  The good news is that with all my complaining – and there’s been plenty – about the exercise and renal diet, my eGFR (estimated glomerular filtration rate) went up to 60 from 50.  That is borderline between stage 1 or normal kidney function and stage 2 or mild chronic kidney disease. This, after three years of being at stage 3 or moderate ckd. I was so floored I was speechless, not at all usual for me.

Of course, along with the good came the bad.  Funny how it always works that way.  It seems my A1c, a blood test which measures how your body handles sugar over a three month period, had risen again.  This has been on a very slow incline for quite a while.  Now it’s 6.3.  At 6.4, I officially have type 2 diabetes.

What is that specifically?  Type 2 is the type that can be controlled by – surprise! – life style changes, while type 1 is insulin dependent or the kind that requires a daily injection.  But wait a minute!  I already limit the sweets (sugar) and make it a point to exercise, so how could this be?

When I asked Dr. Zhao to help me with this, she was able to print out material about diabetic exchanges for meals. I also made an appointment with Crystal Barrera, my nutritionist at Arizona Kidney Disease and Hypertension Center, so she could help me combine the renal, hyperlipidemia, diabetic, and hypertension diets I need to follow. But that’s later on this month. Meanwhile, let’s deal with the material I was given.

Lo and behold, sweets are only one aspect of the diet. I hadn’t realized carbohydrates had so much to do with diabetes. It seems they turn into sugar. Now that I know this, it makes perfect sense.  I just never made the connection. I learned that too many carbohydrates at the same time raise the blood sugar.

Well, I got myself another eye opener as I read.  I always thought of carbohydrates as starches – bread, cereal, starchy vegetables and the beans that I can’t eat anyway since they’re not on the renal diet. But I learned they are also milk and yoghurt (I have never been so thankful to be lactose intolerant), and fruit.

I wasn’t terribly upset since I’m already limited to six units of starches, three of vegetables (starchy or not), three of fruit and one of dairy.  Uh-oh, doesn’t that mean I was already being careful about my food intake? It was a struggle for this miller’s grand-daughter to keep within the bread limits.  What else was I going to have to struggle with?

It turns out the limits for each of the categories of food in the diabetic diet is more liberal than those on the renal diet.  For example, Sunday morning I make gluten free, organic blueberry pancakes. They’re simple, quick and tasty. Bear uses butter and syrup (got some terrific huckleberry syrup for him when I was in Portland, Oregon, for the Landmark Education Advanced Course in June, but I like them plain.) According to the diabetes exchange, one of these counts as a starch (1 4-inch pancake about ¼” thick) and ½ of a fruit exchange (one-half cup of canned or fresh fruit). Wait, there’s more.  I used 1 teaspoon of extra virgin olive oil which is a fat exchange. Hmmmm, this is simply not that different from counting units for the renal diet.

Ah, so the diabetic exchange meal is not that much of a problem for me, it’s combining the restrictions of the four diets I need to follow. I’ve already decided to follow the lowest allowable amount of anything.  For instance, the diabetic exchange allows 2,300 mg. of sodium per day while the renal diet only allows 2,000 mg.  I stay well under 2,000 mg.

I’m beginning to see that I can figure out how to do this myself, but I am so glad to have my nutritionist to verify my conclusions.  You know, the government pays for your nutritionist consultation once a year if you have chronic kidney disease.  It’s not a bad idea to make an appointment.  You may surprise yourself by not being aware of new dietary findings about the renal diet or discovering you’ve accidentally fallen into some bad dietary habit.

Also, as expected, exercise is also important if you (or I) have diabetes. It helps keep your blood sugar levels under control.  The recommendation is 30 minutes five times a week.  I’m already striving for 30 minutes a day every day and don’t want to let that go.  I’m hoping to make that a habit.

I am SUCH a writer!  One of my first thoughts after I was told about the A1c level was, “Maybe I should write a book about type 2 diabetes.”  As far as the ckd book, I was just informed I have blog readers in China who are ordering the book.  Let’s see if we can disseminate the information all over the world.  Here’s to no more terrified newly diagnosed patients!

Until next week,

Keep living your life!

So Is It A Good Thing Or Not?

I cannot begin to tell you how eager I am for the second cataract surgery.  The repaired eye sees so well that the other one seems worse than it really is.

In my big ten minutes of reading at a time while the repaired eye continues to heal, I’ve seen the same word over and over again. It isn’t a word I usually expect to see: statin.  According to Macmillandictionary.com, it means “a drug that is used to reduce the amount of cholesterol in the blood.”

 This class of drugs can have a different name in other countries. It preforms its miracle by inhibiting a key enzyme while encouraging the receptor binding of LDL-cholesterol (Low-density lipoprotein which causes health problems and cardiovascular disease), resulting in decreased levels of serum cholesterol (that’s cholesterol in the blood stream) and LDL-cholesterol and increased levels of HDL-cholesterol.

I don’t know about you, but I went running back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to remind myself what that all means. From the glossary, I understood that dyslipidemia means abnormal levels of cholesterol, triglycerides or both. Well then, what does HDL-cholesterol do? What else? This so called good cholesterol fights LDL-cholesterol.  This is important because what we call the bad cholesterol (LDL-cholesterol) can build up in your arties and may even block them eventually. Look at page 97 in the book for a clear diagram of just how this affects your blood pressure.

Let’s get to the articles now. One from this past June suggests that statins may cause fatigue and that women may experience this more than men. Notice the mention of vitamin D production in the article at:  http://www.ama-assn.org/amednews/2012/06/25/hlsb0626.htm

Study links statin use to fatigue

One possible reason is that reducing cholesterol levels can lead to the production of less vitamin D.

All right, I’m a woman.  I take statins. I’m fatigued, but I take vitamin D supplements.  Back to the sleep apnea exploration for me.

Then in July, only one month later, this article appeared in The New York Times:

 Women May Benefit Less From Statins

Many studies have found that statins reduce the risk for recurring cardiac problems, but not the risk for death. Now an analysis suggests that the drugs may reduce mortality significantly only in men.

You can read more about this at: http://well.blogs.nytimes.com/2012/07/02/women-may-benefit-less-from-statins/?partner=rss&emc=rss

Back in February of this year, The New York Times was warning us about the possible side effects of statins, albeit rare ones:

Safety Alerts Cite Cholesterol Drugs’ Side Effects

Federal health officials on Tuesday added new safety alerts to the prescribing information for statins, the cholesterol-reducing medications that are among the most widely prescribed drugs in the world, citing rare risks of memory loss, diabetes and muscle pain.

The entire article is located at: http://www.nytimes.com/2012/02/29/health/fda-warns-of-cholesterol-drugs-side-effects.html?_r=3

Hmmm, my primary care doctor has been monitoring me for muscle pain since we met.  She has already changed my statins three times in the last five years.  As for the memory loss, who can tell?  I’m at that age, you know. Diabetes can be a problem.  You take statins to reduce your LDL cholesterol so that you don’t end up with high blood pressure, but it may cause diabetes. Which is the lesser of the two evils? Read on for help from USA Today this month to make that decision.

Benefits of cholesterol-cutting drugs outweigh diabetes risk

The benefits of taking cholesterol-lowering medications outweigh the increased risk some patients have of developing diabetes from using the drugs, a report out Thursday says.

Patients who were at higher risk for diabetes were 39% less likely to develop a cardiovascular illness on statins and 17% less likely to die. Patients who were not already at risk for diabetes and were taking statins had a 52% reduction in cardiovascular illness, and no increase in diabetes risk.

“When we focus only on the risk (of diabetes) we may be doing a disservice to our patients,” says lead author Paul Ridker of Brigham and Women’s Hospital in Boston. “As it turns out for this data, the hazard of being on a statin is limited almost entirely to those well on their way to getting diabetes.”

Here’s where you can find that article: http://www.usatoday.com/news/health/story/2012-08-09/statins-diabetes/56920686/1?csp=34news&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed:+UsatodaycomHealth-TopStories+%28News+-+Health+-+Top+Stories%29

Also this month, there was good news about statins:

 Statins reduce pancreatitis risk

Statins reduce the risk for pancreatitis in patients with normal or mildly elevated triglyceride levels, say the authors of a large meta-analysis.

The address?  It’s: http://www.news-medical.net/news/20120824/Statins-reduce-pancreatitis-risk.aspx

My all time favorite appeared in The New York Times as a blog in March of this year.

Do Statins Make It Tough to Exercise?

For years, physicians and scientists have been aware that statins, the most widely prescribed drugs in the world, can cause muscle aches and fatigue in some patients. What many people don’t know is that these side effects are especially pronounced in people who exercise.

Do read the rest of it at: http://well.blogs.nytimes.com/2012/03/14/do-statins-make-it-tough-to-exercise/?smid=tw-nytimeswell&seid=auto

I got this smug sense of satisfaction at a hit against exercise… until I realized I still had to exercise so I could keep my organs healthy.  Damned if you do, damned if you don’t.

Being in the midst of cataract surgeries, I could not help myself.  I had to include this month’s article from Medical News Today even though it doesn’t mention ckd. The article’s address is: http://www.medicalnewstoday.com/articles/248785.php

Cataracts Risk Associated With Statins    
     
     

A new study, appearing in the August issue of Optometry and Vision Science , has found that patients might have an increased risk of developing age-related cataracts if they use cholesterol-lowering statin drugs.

We know I’m older and I use cholesterol lowering statins.  But I am getting better eye sight than I ever had (I think).

Note: I may have been too quick to condemn Medical ID Fashions.  The rhodium replacement bracelet they sent when I complained the first bracelet of brass, copper and silver both tarnished and wasn’t waterproof seems to be doing well.  It’s too shiny for me, but it is waterproof and hasn’t tarnished.  I also discovered this company donates $2.00 of every purchase to one of six charities. Maybe they just didn’t receive my first and second emails.

Before I forget, the book is not only available in Europe now, but it’s on sale in India too. Amazing.

I’ve given you enough homework to last more than a week!  Uh-oh, getting back into teacher mode.

Until next week,

Keep living your life!

Good, Bad or Unnecessary?

When I came home from Portland, I had this crazy desire to clean – although Bear always keeps the house in pristine condition when I’m gone.  I tried to ignore it, but that didn’t work.  So, I cleaned, right down to cleaning out the articles I keep for the blog.  Of course, being me, I had to read each one before I trashed it. Lo and behold, I started seeing a pattern with some of them.

On Halloween of last year [my brother, Paul Peck’s birthday, by the way], this article appeared.  By the end of the blog, you’ll be able to figure out if it was a trick or a treat.

FDA staff say Merck’s Vytorin helps kidney patients

(Reuters) – U.S. Food and Drug Administration reviewers said Merck’s cholesterol-lowering drug Vytorin was effective in reducing the rate of heart attacks or other cardiovascular problems in patients with kidney disease.

The FDA reviewers also said Merck’s blockbuster drug, which pairs a new type of cholesterol fighter Zetia with Merck’s older statin drug Zocor, is unlikely to cause or promote cancer.

But, as I read further in the article, I found that Vytorin contained the generic drug simvastatin which had already been approved to lower cholesterol.

You can read the entire article at: http://www.reuters.com/article/2011/10/31/us-fda-merck-vytorin-idUSTRE79U33Y20111031

Something nagged at me, so I went to Drugs.com to check out Vytorin.  This is what I found there:

What is Vytorin?

Vytorin contains a combination of ezetimibe and simvastatin.

Vytorin is used to treat high cholesterol in adults and children who are at least 10 years old.

Ezetimibe reduces the amount of cholesterol absorbed by the body.

Simvastatin is in a group of drugs called HMG CoA reductase inhibitors, or “statins.” Simvastatin reduces levels of “bad” cholesterol (low-density lipoprotein, or LDL) and triglycerides in the blood, while increasing levels of “good” cholesterol (high-density lipoprotein, or HDL).

[Another of Vytorin’s original claims had been that it attacks both genetic and life habit causes of hyperlipidemia.  Remember those tv ads about whether what you ate or Uncle Frank’s genes caused your high cholesterol?  That’s where this claim was made.]

As I kept reading, I found two disturbing warnings:

  1. In rare cases, simvastatin can cause a condition that results in the breakdown of skeletal muscle tissue, leading to kidney failure. This condition may be more likely to occur in older adults and in people who have kidney disease or poorly controlled hypothyroidism (underactive thyroid).
  2. Avoid eating foods that are high in fat or cholesterol. Vytorin will not be as effective in lowering your cholesterol if you do not follow a cholesterol-lowering diet plan.

So a pill that combats high cholesterol on both fronts – genetics and life habits – still requires a life habit change [diet] but could kill CKD patients when given to them to avoid heart problems.  I was not happy.

But it gets even weirder [Did you know Portland’s city motto is “Keep Portland Weird”?] Remember that simvastatin supposedly lowers bad cholesterol and raises good cholesterol and that simvastatin is the generic drug in Vytorin.

‘Good’ cholesterol’s heart benefits challenged

Drugs to raise HDL can’t be assumed to reduce heart attack risk

CBC News

Posted: May 17, 2012 3:46 PM ET

Having naturally high levels of “good” cholesterol doesn’t lower the risk of heart attacks as believed.

LDL cholesterol is referred to as “bad” cholesterol because when there’s too much, it promotes the build-up of plaque in artery walls.

HDL cholesterol is known as “good” cholesterol because higher concentrations have been associated with lower risk of heart attacks in observational studies.

The hoped for benefits of increasing high-density lipoprotein or HDL cholesterol for lowering heart attack risk haven’t panned out in randomized trials of experimental drugs.

According to conventional wisdom, those who inherit genetic variants for higher HDL levels should have lower cardiovascular risk. When researchers tested 116,000 people, they found 2.6 per cent of them were genetically

This article’s address is:  http://www.cbc.ca/news/health/story/2012/05/17/cholesterol-good-hdl-heart-attacks.html?cmp=rss

So you may be taking a drug prescribed to treat your hyperlipidemia but it doesn’t matter if your good cholesterol is raised, even though that’s one of Merck’s [the manufacturer] claims.  In addition, it is possible that this drug prescribed to prevent heart problems in CKD patients may kill them. Why do I get the sinking feeling that this is business as usual for the drug industry?

On another note, several medical personnel I met in Portland brought the book into their hospital.  Thank you Kenyon Decker and Corinna Bayer for bringing the book to Portland VA Medical Center.  Mark Anderson was kind enough to bring the book to the attention of the Oregon Urology Institute, while Marc Overbeck, the director of Oregon Primary Care Office at the

Office for Oregon Health Policy & Research introduced the book there. Dr. Greg Nigh’s wife (who neglected to give me her name, unfortunately) took the book to her husband Nature Cures Clinic, LLC. Another nurse, a Reiki master and others took the book to share with their practices.  Landmark people are wonderful when it comes to doing good works!  If you were one of these unnamed people, leave a comment and I’d be more than glad to get your name in print by way of a thank you.

Unfortunately, I need to report that the medical bracelet I am so unhappy with is now thoroughly discolored – something else that was not mentioned before I bought it.  I would notify the company but am lax to do so since they didn’t respond to any of my other emails.

Also, if you’d like to leave a comment, please don’t use your work address.  WordPress classifies it as spam and even though I go through all the comments, without a working email address I am not confident that WordPress has made a mistake.  In other words, make sure there’s a working email with your comment so it doesn’t get lost in the spam folder.

Wow, this was a long one.

Until next week,

Keep living your life!