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 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 at  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 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 for more about EHR. This time at

“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!

And (S)He’s Safeeeeeeeeeeeeee

Having had no medical emergencies this past week (thank heavens!), I was casting around for this week’s topic when my dentist reminded me that I need to keep whitening my other teeth for at least another week so they somewhat match the new upper front six tooth sparkling teethbridge.

Whiteners… how do they affect the kidneys if they do at all?   Should I use over the counter products?  A kit I purchase from the dentist?  An in-the-chair dental bleaching?

These are the kinds of questions I keep asking, for deodorant, toothpaste, makeup, even waxing.  Boy, have I ever covered a lot of ground in this area in the last couple of years.  But, as usual, it’s still not enough.  I’ve been playing around with the idea of a newsletter based on what’s safe and what’s not as far as personal products and medical treatments.

smelly armpitsI’ve already written about deodorants and toothpaste.  What a response, especially to the deodorant blog! Most of my readers are not direct email, but read the blog via Facebook and that’s where the lively discussions take place.

Here’s another example.  When I wrote about macular degeneration, I mentioned that my ophthalmologist offered his own designer vitamin that had a 25% chance of slowing down the sight loss involved in this disease.  Once I eliminated the vitamins in the compound that were for preventing cataracts (I’ve already had those removed from both eyes), I was still left with a bunch that might work and a doctor who didn’t know what they would do – if anything – to my kidneys.  I researched them one by one and discovered that only two would be safe for CKD patients.

Now, I don’t mean to whine (Wine? Does that affect the kidneys?), but this is a lot of work for each new product you want to use.  Sometimes even our nephrologists can’t tell us because the product is so new.  I’ve gone to the pharmacist with new products many times and, if they weren’t too busy, they would call the company that made the product immediately.  A call from a pharmacist seems to take precedence over a call from a consumer when it comes to inquiries.

I looked at the ingredients at the dental bleaching product I’d purchased and realized I would have to research them one by one.  The dentist wasn’t sure.  The nephrologist was out of town and I didn’t feel this necessitated a call from his covering doctor.  The pharmacy was very, very busy. (We don’t exactly have winter in Arizona, but we do have flu and cold season).

There are nine ingredients in the dental bleach product I chose.  One is water, so I didn’t research that.  I am not a doctor, never claimed to be one, and repeatedly reminded people that I am not one.  Apparently, my computer hasn’t gotten the message.  But, while I am not a doctor, I’m a terrific researcher.

warningHowever, in this case, I could not understand even one of the articles I found about the eight ingredients I didn’t know about.  This was extremely frustrating. So, I did what I probably should have done in the first place: I called the company.  They looked at the product information and assured me the product had no effect on the kidneys at all, but if I wasn’t comfortable with that, to contact my local pharmacist and/or my doctor.  I was willing to take their word for it (but I will call both the pharmacist and my nephrologist anyway.  Just to be sure, you understand).

Ah, the problems of being a chronic kidney disease patient… and we thought it was all about our doctors’ appointments, diets, sleep, stress levels, and exercise!

On the book front, yet another reminder for you that if you EVER bought a print copy of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease at any price from, you are now eligible for an electronic copy for $2.99.  That is a 70% savings over Book Coverthe usual price of $9.95 for the digital book.  And, yes, I did do that on purpose so that more people will have access to the information they need if they, a loved one, a colleague, or anyone they know and care about has Chronic Kidney Disease.  I can’t take credit for coming up with this Kindle MatchBook program just in time for your holiday shopping, however.  The accolades for that belong solely to Amazon.

SlowItDown is constantly on the lookout for new communities to bring our free Chronic Kidney Disease education taught by trained educators.  If you’re Black, you’re part of a high risk community.  If you’re Hispanic, you’re part of a high risk community.  Heck, if you’re over 60, you’re part of a high risk community!  Gather your friends and family and let’s get SlowItDown over to you so you can all rest a little bit easier by having an understanding of just what your disease means to you and your community.kidney-book-cover

Many, many thanks to Alex Gilman who was our host for Thanksgiving this year.  He made sure the turkey was cooked in a way that I could eat it and was extremely understanding when I forewent certain of the side dishes and of the small portions I chose.

We’ve got to remember it’s not easy for those who have no knowledge of Chronic Kidney Disease to understand why we eat the way we do.  I cannot even count the number of people who were downright insulted that I would do no more than taste what they’d made because the ingredients were not on the renal diet… and that’s after I’ve explained the renal diet!

MenorahTo those who celebrate, I hope you’re enjoying Chanukah.  Kwanzaa, a week-long celebration, won’t start until the day after Christmas, December 26.  I found this informative website for those of you who see me keep mentioning Kwanzaa, but really aren’t sure what it is:  As you gear up for these two holidays or enjoy the last three days of Chanukah, consider helping out those with CKD via the book or contacting SlowItDown ( for them.

Until next week,

Keep living your life!

The Eyes Have It.

All these health issues for my family members and me!  Things do seem to happen in threes.  First there was Bear’s back (oh, why don’t I write about that next week?), then Nima’s gall bladder (She is doing very well, thanks) , and now my macular conception… I mean macular deception… no, I don’t, I mean macular degeneration.  I have a lot of resistance to this as you can see.  That probably has a lot to do with my love of reading and the fact that I’m a writer.  I’ll deal with it.

Anyway, I have gotten lots of questions about what this is.  It’s an eye problem.  The macula (macular means about the macula) is the layer of tissue on the back of the inside of your eyeball in the middle of your retina. The National Institute of Health’s Senior Health has a succinct definition of the disease at: macula

“Age-related macular degeneration, also known as AMD, is an eye disease that affects the macula, a part of the retina. The retina sends light from the eye to the brain, and the macula allows you to see fine detail.”

No one seems to know why it happens, but it does get worse as you get older.  There are two kinds.  Lucky me, I have the dry or non-neovascular or nonexudative kind.  Nonvascular means NOT new blood vessels, which is the wet or vascular kind of macular degeneration.  As for exudative, the medical dictionary at:, explains that exudation means:

“the escape of fluid, cells, and cellular debris from blood vessels and their deposition in or on the tissues, usually as the result of inflammation.”

Again, I have the nonexudative kind. So wet macular degeneration – the kind I do not have – consists of fluid escaping from the eye ball to form new blood vessels. I’m going to let Natural Products That Make a Difference handle this one since their explanation is both clear and succinct:

“Wet Macular Degeneration (also called neovascular or exudative) refers to a condition where the macula degenerates (just as in Dry Macular Degeneration), but as a result of hemorrhaging blood vessels in the eye or the abnormal growth of blood vessels in the eye. In Wet Macular Degeneration, abnormal blood vessel growth is triggered in the choriocapillaries (behind the retina) resulting in the leakage of blood and protein. The resulting fluid leakage and overgrowth of blood vessels can quickly damage the macula and its rod and cone cells, resulting in severe loss of central vision. Hemorrhaging of the blood vessels around the retina or macula can cause vision loss virtually overnight, much the same way Diabetic Retinopathy does. Even if the vessels do not hemorrhage, the growth of blood vessels on the macula or the retina can cause severe central vision loss (though this may not be as sudden).”

isYou can read more at:

This may be corrected by surgery, something that is not available to dry macular degeneration sufferers.  That’s where the sarcastic “Lucky me” came in above.  However, you could also lose your vision overnight with this kind, so maybe I am lucky that I have the dry kind.

Dry macular degeneration is caused by drusen or yellow deposits made up of lipids (oh no, a fatty protein!) Of course, there has to be two kinds of these as well, hard and soft. The hard doesn’t seem to be problematic, or at least not for a long time, but the soft?  This one is a good indication you have AMD.  The soft drusen tend to cluster together and, with no distinct borders, it makes sense that would affect your vision.  Diagnosing does require your ophthalmologist perform a dilated eye examination. Now remember, no one knows what causes AMD so drusen are not the source, simply an indication of higher risk.eye exam

No surgery fix for me since I have dry macular degeneration, but according to the second Age Related Eye Disease Study or AREDS2 study (see , certain vitamins and minerals might slow down the rate of degeneration by 25%.  I don’t know about you, but I’ll take even a 25% chance.  These are my eyes!

My ophthalmologist had a formula made just for this purpose and wanted me to take it.  Of course he did.  He’s m yophthalmologist and my eyes are his first priority.  But, while I value them greatly, I made it clear my kidneys are my first priority.  This is where the Chronic Kidney Disease element comes into today’s blog.Book Cover

I’d had kidney stones, so I couldn’t take the vitamin C in the formula. There’s no kidney related reason not to take vitamin A, but it is included for the purpose of avoiding cataracts. I’ve already had cataract surgery so it wouldn’t do me any good. Same for vitamin E.

Zinc was in the formula, but this metal  – which is an essential trace element – contains cadmium which may cause kidney failure.  Goodbye zinc. Copper, another metal and essential trace element, was in the formula because zinc supplements can be the cause of copper deficiency. One problem. Copper can cause kidney damage if you take large quantities or take it over a long period of time.  Can’t take that.

And then there was Omega 3 Fish Oil, but I already take that to reduce the progress of my chronic kidney disease and in larger quantities than suggested by the ARED2 study. The antioxidants (inhibits the negative effects of oxidation) lutein and zeaxanthin are also in the formula and I am taking them separately.  I looked them up on WebMD before I made my decision.  This is what I found there:

Eye-related benefits: Lutein and zeaxanthin protect the eyes from harmful high-energy light waves, such as some ultraviolet rays in sunlight. Studies suggest that high levels of lutein and zeaxathin in eye tissue are associated with better vision, especially in dim light or where glare is a problem.”

You can read more about them at:

md imageThere were many more ingredients in this ophthalmologist’s formula and I’m beginning to understand that each ophthalmologist may slightly alter the formula he has made for his dry macular degeneration patients. So much information! The picture shows just about how I see. My problem seems to be more pronounced in the left eye and it’s not this bad yet.  That could take up to 10 years… or less, much less.

Have you taken a look at SlowItDown’s Facebook page yet?  Keep those suggestions coming, folks.

As for the book, I am gratified that so many people have made it a point to tell me how much it has helped them… or their patients.

Until next week,

Keep living your life!

The Flu Flew By

‘Tis the season to be jolly… and get the flu.  You’ll be in crowds at your holiday parties, even in stores when you get your shopping done. Everyone’s got to eat, even Scrooge, so you will be in the markets – and crowds – whether you want to be or not.

Uh-oh, so what do you do about the flu? According to Dec. 3, 2012’s MedPage, the flu has arrived early this year.  Bah! Humbug! Just in time for the holiday season.

“The flu season is officially under way about a month earlier than usual, the CDC announced on a call marking the beginning of National Influenza Vaccination Week. {For your information, that was Dec. 2-8 this year} ‘This is the earliest regular flu season we’ve had in nearly a decade, since the 2003-2004 flu season,’ CDC director Thomas Frieden, MD, MPH, said on a conference call with reporters.”Shoppers1

Who even knew there was a National Influenza Vaccination Week? You can read a bunch of statistics about this early flu season at:

Reminder: as a chronic kidney disease patient, you already have a compromised immune system.  Help yourself to avoid the flu by getting that vaccine.  In some cases (you’ll have to ask health care worker if you are part of this group), you may be able to take the nasal vaccine.  This is especially helpful if you have a great dislike for injections, but if you can’t because you have ckd, just look away during the shot.  That has been proven to make it easier to handle the fear, as I wrote about in an earlier blog.

By the way, Medicare covers the cost of the flu shot.

So, again I ask what do you do about the flu? According to, you can protect yourself from the flu by doing the following:

Getting the flu vaccine is the most important step in protecting yourself from the flu. Here are some other things you can do to keep from getting and spreading the flu:

  • Stay away from people who are sick.
  • If you are sick, stay home for at least 24 hours after your fever is gone.
  • Wash your hands often with soap and warm water.
  • Try not to touch your nose, mouth, or eyes.
  • Cover your mouth and nose with a tissue when you cough or sneeze

The entire article about the flu may be found at:

Most of this sounds fairly obvious. But then Bear told me about someone at work who simply sneezes and coughs into the air around him. That got me to thinking.  Do you find yourself shying away from certain people who do the same?  Maybe you should.

Since the cataract surgery and the sealing off of my tear ducts, I am always touching my eyes to wipe away the extra moisture. Until I read this article, I’d always thought of myself as someone who doesn’t keep touching my face.  But that’s not true, is it?

And how many people in this economy really do take off from work for 24 hours after their fevers break?  Who can afford to do that? We have people struggling to hang on to minimum wage positions while a string of other people are ready and waiting for these same jobs.

It’s worth thinking about this yourself.  Remember when we were taught to cough or sneeze into the inside of our elbows?  Looks like that’s not as effective as stopping the particulate spray immediately at its source – your nostrils.  Makes sense to me.

We live in Arizona.  It’s so dry we try NOT to wash our hands since that dries out the skin.  I’m not saying we’re a dirty demographic, simply that we try to wash our hands only when necessary. That is not often, but it needs to be during flu season.

fluBut have hope!  According to Rob Stein on NPR’s Health News, “One big difference between this year and the 2003-2004 season is that so far the vaccine appears to be a very good match for the strains of flu that are circulating most widely. That’s important because one of the reasons officials are concerned is that one of the strains is similar to the 2003-2004 strain that caused so much illness and so many deaths.”

I think that’s good news.  It sounds like good news.  Is it good news? Why DID the 2003-2004 strain cause so much illness and so many deaths?  Somehow, that’s not as reassuring as I’d like it to be.

The original article is at:

I wondered how to tell the difference between a cold and the flu.  Since being diagnosed with ckd, I make it a point to take the flu vaccine annually, yet there have been times when I just didn’t feel that well. I found my answer in the following:

“ ‘With influenza you might also feel very poorly, with aches and pains in your muscles and joints,’ said Dr. William Schaffner, chair of preventive medicine at Vanderbilt University Medical Center in Nashville, Tenn. ‘There’s often a cough, too, which is much more prolonged and pronounced.’ ”

That does answer my question.  No muscular aches or pains, so what I experienced was just a cold.

Don’t let yourself become run down with the festivities this year, take the time to relax, maybe even put your feet up and read What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. It’s available in digital – which is less expensive than the book – and print at and B&

You’ll be in good company.  I’ve gotten notice that personal trainers, doctors, medical assistants, phlebotomists, physicians’ assistants, chiropractors, naturopaths and gym owners have been reading it to understand how better to deal with their clients (or patients, as the case may be) who have CKD.  What a nice holiday present for me.

Here’s my wish that you had a Happy Chanukah and/or are happily preparing for Christmas and Kwanzaa.

Until next week,2012-12-12 19.41.37-1

Keep living your life!

Fruits, Vegetables, and Staten Island.

I brought up my daughters on Staten Island which is still part of New York City.  Staten Islanders often call themselves “the forgotten borough.”

I have been riveted to my computer for news of friends and family and to pass information about them to others even further away than I am.  Hurricane Sandy has not been kind to the island.

Now that people have electricity, phone service and cell service (for the most part), I wonder if those with early stage chronic kidney disease are able to get the food on their diet.

Nima, my Staten Island daughter, and I talked last night about how the food that defrosted in the freezer during the no electricity time has refrozen now that the power is back on. Sometimes, people don’t realize that defrosted frozen food must be tossed, not refrozen; it’s no longer safe to eat.

You can see (and smell) that most of the refrigerator food is no longer edible after five days without electricity.  I wouldn’t trust the rest of it.  There’s a reason we refrigerate food.

According to the United States Department of Agriculture’s Food Safety And Inspection Service, these are guidelines to follow:

“Always keep meat, poultry, fish, and eggs refrigerated at or below 40 °F and frozen food at or below 0 °F. This may be difficult when the power is out. [This is me here: Or impossible with five days of no electricity even if you’ve kept the refrigerator and freezer doors closed.  Please, take no chances.]

Keep the refrigerator and freezer doors closed as much as possible to maintain the cold temperature. The refrigerator will keep food safely cold for about 4 hours if it is unopened. A full freezer will hold the temperature for approximately 48 hours (24 hours if it is half full) if the door remains closed.”

You can find food safety charts on their website at:

There’s been new research that indicates fruits and vegetables are more important to ckd patients than originally thought.  Keep this in mind when you restock your refrigerator.

This article appeared in The Kidney Group of South Florida’s blog a few days ago. They originally located the article in HealthDay News. (San Diego hosted the American Society of Nephrology’s annual meeting this past weekend, which was the source of quite a bit of new information.)

“After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. “Our findings suggest that an apple a day keeps the nephrologist away,” study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.”

Apparently, some ckd suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at:

What is not mentioned in the findings of the study is whether or not the ckd patients adhered to their fruit and vegetable restrictions.  I am limited to three servings of each daily with their serving sizes limited according to the fruit or vegetable.  For instance, I can consume three apricot halves during the same day, but only two peach halves. In addition, the fruit is usually canned so I can drain away the potassium in its juices.

I’ve written repeatedly about the prevalence of chronic kidney disease.  Now the public is beginning to understand.  Hmmm, I don’t mean my writing alone did that.  Consumer Reports, a magazine you should know if you’ve ever bought a car, an electronic device or anything else you need information about before buying now has a Chronic Kidney Disease Site.  Take a look for yourself.  The address is:

While my biopsy stitches are healing nicely, I did have to return to the ophthalmologist for a secondary membrane procedure.  I had read about it before the original cataract surgery, but hadn’t taken it into account until I realized I was having trouble seeing in one eye despite the surgery.  I found it fascinating to see what medical science can do with the human body these days.

According to the University of Wisconsin – Madison’s School of Medicine and Public Health, “The natural lens of the eye is enclosed in a clear, cellophane-like membrane called the capsule. During cataract surgery the front of the capsule is opened. The cloudy lens inside the capsule is removed. In most cases, the back of the capsule is left in one piece, and a plastic lens implant is put in place in front of the capsule. In some patients, the capsule can become thickened and cloudy over time…”

Their address is:

Wouldn’t you know I was one of those whose “over time” was only three months.  A laser was used to make a hole in the back of the capsule and I’m already beginning to see just as well out of that eye as the other one.

One last note, Libre Clothing (makers of dialysis clothing) who has been such a good friend to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, is holding a contest on Pininterest from Nov.12-16. I’d suggest you take a look!

Until next week,

Keep living your life.

Read, Read, Read

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


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

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

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


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

                                     physician  agree with me.


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

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

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

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

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

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

                                 see them immediately.


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

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

Opening MDs’ Notes to Patients Wins Support

By David Pittman, Washington Correspondent

Published: October 13, 2012

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

You can read the rest of this one at:

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

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

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

The other article that caught my eye was this one:

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

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

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

The entire article is at:

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Drink Up

This is a pre-canned blog written prior to the second cataract surgery. As mentioned last time I brought this up, I can only type (read, watch movies, etc.) for ten minutes at a time during the first two weeks of recovery.  I am not that great at short term thinking – although I get some stunning story ideas and problem solves while I’m simply listening to a book on my Kindle.

One of my problem solves has been to write the blog in Word where I can easily hyperlink sites for you. Then, when I copy the blog to wordpress, you’ve got hyperlinks. It beats your copying and pasting, especially if there are several links that interest you in the blog.  See, there is an upside to non-reading recovery periods (I can just hear Nima now: “Ma, that’s TOO Pollyanna!”)

Something kept nagging at me until I forced myself to remember what it was (who knew humans had the capacity to do that?). Something about what we drink. Since we (as chronic kidney disease patients) barely – or in my case, don’t – imbibe that means juice, water or soft drinks.  I’d rather get the fiber in my big three servings of fruit a day so that narrows the choice to water or soft drinks.  That’s what it was!

This is an older article, but one that resonates even with those who insist upon drinking soda. Well, except for my childhood buddy who insists she’s drunk diet sodas for a long time and they haven’t killed her yet. On the other hand, until her own death my mother was convinced she had contributed to my dad’s death due to pancreatic cancer by insisting he use NutraSweet, a brand name for aspartame.

Aspartame alert: Diet soda destroys kidney function

Thursday, December 17, 2009 by: E. Huff, staff writer

“Scientists from Brigham and Women’s Hospital in Boston have revealed results from a study outlining some of the effects of artificial sweeteners on the body. Conducted on a group of 3,000 women, the results indicated that those who drank two or more artificially-sweetened beverages a day doubled their risk of more-rapid-than-normal kidney function decline.”

The article includes the fact that more sodium is used in diet sodas, and how stevia (natural sweetener) could be used instead. You can read more at:

The American Cancer Society seems to have only one concern about aspartame as of February of this year.  You can read about aspartame and Phenylketonuria (PKU) at:

Wikipedia has this to say about aspartame: “Aspartame (APM; /ˈæspərtm/ or /əˈspɑrtm/) is an artificial, non-saccharide sweetener used as a sugar substitute in some foods and beverages. In the European Union, it is codified as E951. Aspartame is a methyl ester of the aspartic acid/phenylalanine dipeptide. It was first sold under the brand name NutraSweet; since 2009 it also has been sold under the brand name AminoSweet. It was first synthesized in 1965 and the patent expired in 1992.

The following is my favorite article by far.  I am a coffee lover to the point that I sometimes buy and blend my own beans – a pleasure introduced to me by my ex-husband and the father of my children. Yes, of course I have chronic kidney disease and, yes of course caffeine is frowned upon, but there is that 16 oz. (two whole cups!!!!) permitted for those who simply must have their coffee – me! Remember, I mention in the book that this helps keep me from feeling deprived since I follow the renal diet.

 “Kicking your morning off with a cup of joe may provide more than a caffeine boost. A recent study from the National Institutes of Health (NIH) found that older coffee drinkers — even those who swill decaf — have a lower risk of death than those who don’t drink coffee.

‘Coffee is one of the most widely consumed beverages, both in the United States and worldwide,’ the authors of the study write. ‘Since coffee contains caffeine, a stimulant, coffee drinking is not generally considered to be part of a healthy lifestyle. However, coffee is a rich source of antioxidants and other bioactive compounds.’ ”

Read more:

Another article from June of this year talks about water.  While you read this, keep in mind that CKD folks need 64 ounces of FLUID, not necessarily water, a day.

 8 glasses of water a day ‘an urban myth’

Water and a well-balanced diet ‘do far more than water alone,’ Australian researcher says

CBC News

“The common advice to drink eight glasses of water a day doesn’t hold water, say nutrition and kidney specialists who want to dispel the myth.”

The article includes fluid from other sources, including my beloved coffee.  The address is:

I have received three calls just this last month from people picked up the book flier AKDHC has placed in their office waiting rooms. The people who contact me have no computer nor know how to use one. They thought they couldn’t order the book unless they had one.  Wrong: contact me at 623-266-2609 (as they did) or order one by email at:

Apparently, there was also an economic problem.  These days, we can certainly understand people not having the money for the book, but I can’t see that as a reason for them to have no access to the information in the book. 

I’ve sent an office copy of the book to each of their nephrologists.  This way they can read the parts of the book they need the most while they wait (and don’t we always have to wait?) for their appointments.

Does your nephrologist’s office need a copy of the book for his/her waiting room? Just send me the name and address of your doctor and I’ll be more than glad to send her/him a complimentary copy. The name of the game is making sure chronic kidney disease patients have access to information, not to get rich.

Until next week – when there will be another pre-canned blog,

Keep living your life!

Oh, Say Can You See?

As you already know, tomorrow is my second cataract surgery.  The first, three weeks ago, was on my right eye.  That eye now sees wonderful shades of color I missed before.  I’m so eager to see what my photography will look like now.

I also don’t need my glasses to read with that eye, although it’s been made clear to me that this may change.  I am eager to do the left eye. I’ve never had perfect vision and this is as close to that as I can come.

As usual, the surgery (well, anything really) got me to thinking if this was in any way related to my chronic kidney disease.  In a Google search, this is the first site that came up – my old friend DaVita.

 Eyes and Chronic Kidney Disease

The leading causes of chronic kidney disease (CKD) are diabetes and high blood pressure. These conditions are also the leading causes of eye disease and loss of vision. If your renal disease is a result of either condition your vision may be at risk. Diabetes and high blood pressure often go undiagnosed because people don’t notice any symptoms. As time goes on without medical treatment, these conditions can worsen and other complications—such as kidney disease and eye problems—arise.

If you have chronic kidney disease not due to high blood pressure you may still want to monitor your blood pressure regularly, as kidney disease can cause high blood pressure and put your vision at risk.


Cataracts occur when the lens of your eye becomes cloudy. The lens of the eye is normally clear. Its purpose is to focus the light coming in from the pupil to the retina at the back of the eye. A cataract scatters the incoming light and can make everything look blurry.

Cataracts develop as we age. But patients with diabetes are at a higher risk for cataracts. Diabetics can develop what is known as “sugar cataracts,” a cataract that appears suddenly and grows to such a point that the entire lens is clouded. High levels of glucose react with proteins found in the eye and form a byproduct that settles on the lens.

Hmmm, I don’t have diabetes but I do have high blood pressure (oh, okay, and I’m old – scratch that and make it older).  That got me to thinking about what it looks like.  Although I’m a writer, visuals make difficult subjects easier for me to understand. That’s when I looked for this:

Let me describe the surgery to you.  There was the usual fasting as of midnight the previous night and the wait broken up by filling out forms and watching videos about post op care.  Almost forgot: I was told to take only my hypertension medication and no others. I must mention that Bear was a wreck during the whole wait  while I was eager to see clear colors again. (He loves me.)

Then I was escorted into the pre op area where the usual vitals were taken and I was  put out for a few minutes while the substance to paralyze the eye was injected directly into the eye. In retrospect, I’m glad I didn’t have to suffer that wide awake.

But the surgery itself was an incredible surprise.  I knew I was going to be awake during the procedure but I was unprepared for the beautiful colors I would see through the eye.  I had to be reminded to be quiet so that the talking wouldn’t make my head move.

I wanted to know why I was seeing the enchanting turquoise auras around the ceiling lights.  Then I became more interested in what I can only describe as turquoise circuit boards that I saw in that eye.  I’m pretty sure that was the original lens being blasted to pieces. I distinctly remember losing interest during the  insertion of the new lens.

This more scientific explanation makes the procedure more clear: “Most modern cataract procedures involve the use of a high-frequency ultrasound probe that breaks up the cloudy lens into small pieces, which are then gently removed from the eye with suction. This procedure, called phacoemulsification or “phaco,” can be performed with smaller incisions than previous surgical techniques for cataract removal, promoting faster healing and reducing the risk of cataract surgery complications, such as a retinal detachment.

After the cataract and all remnants of the cloudy lens have been removed from your eye, the cataract surgeon inserts a clear intraocular lens, positioning it securely behind the iris and pupil, in the same location your natural lens occupied. (In special cases, an IOL might be placed in front of the iris and pupil, but this is less common.)

The surgeon then completes the cataract removal and IOL implantation procedure by closing the incision in your eye (a stitch may or may not be needed), and a protective shield is placed over the eye to keep it safe in the early stages of your cataract surgery recovery.”  This is from

The only complaint I had about the entire procedure was that the surgery table I was laying on had no shoulders making it uncomfortable after a while. This same table was rolled into the surgery room, so it made sense that the  shoulder areas were cut out.  That’s so that the surgeon could pull his stool as close to my eye as possible.

Here’s the part you have to watch out for (oh, poor choice of words for describing cataract surgery).  Although I had carefully explained that I have chronic kidney disease, I was still given a sulpher based medication to prevent pressure from accumulating in the recovering eye.  If you’ve read the book, you know that this is not good for the kidneys and my nephrologist was very upset that they were given to me when I had a bladder infection a couple of years ago.

I talked this over with my ophthalmologist, Dr. Gary Mackman of Phoenix Ophthalmologists, who seemed surprised that it was given to me and assured me I needn’t take it after the second surgery. I hope I hadn’t made a mistake by taking it after the first surgery, but when the nurse said BOTH my doctors prescribed it, I thought she meant Dr. Mackman and my nephrologist.  As I sat there for the required hour for recovery before being released, I realized she’d meant the ophthalmologist and the anesthesiologist. Uh-oh, I’ll have to keep a close eye (sorry!  I couldn’t resist) on my numbers on my next labs.

I am now laughing out loud – lol – because I’m re-reading the book with the new eye and can more readily appreciate the high cloth content in the paper; in other words, it’s really easy on the eyes.

Until next week  (when you’ll be reading a pre-canned blog),

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, 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:

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:

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:

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:

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:

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:

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:

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!

Stressed? You Must Be Kidding.

You’re reading this and I’m recovering from my first cataract surgery.  Only one eye is operated on at a time, so the next one is September 4th.  Part of the post operation plan is not driving for a week, which I’m sure I’ll be chaffing at before that week is over.  Another part is reading (and computing) for only ten minutes at a time which is why I’m writing this particular blog a week ahead of time, even though it will be published August 21st.

If you’re following us on Facebook or Twitter, you know I had a cardiovascular scare during my pre-op testing.  While talking to the ever reassuring Dr. Waram at Southwest Desert Cardiology, he mentioned the stellar reviews for What Is It And How Did I Get It? Early Stage Chronic Kidney Disease on Amazon. That got me to thinking I hadn’t looked at them so months, so I did.  I found two new ones I want to share with you:

5.0 out of 5 stars very helpful for calming down and getting to work on controlJune 23, 2012

By R. Sass

Format:Paperback|Amazon Verified Purchase

This is not a medical book, but it is the ONLY book I could find discussing the issue of early stage CKD. My twenty month old son was diagnosed on thursday, almost in passing by his nephrologist. I did not ask any questions on CKD, I was not handed any pamplets – I went into schock and reacted like I always do to bad news I can not process. I asked questions about my infant son’s high blood pressure (the reason for the appointment). Tried to pay attention, remained calm so as not to upset my children who were with us in the room, and then began to research like crazy. I also went back to the doctor and confirmed that she had in fact diagnosed my son with CKD (stage 1). So for me this book has been very helpful, but again I am still in a schock like state and just want to know how to slow the progression of the disease so that my son can have a mostly normal childhood. Best I can tell there is no treatment for the early stages and at least my son’s nephrologist (who is an expert in the area) does not appear to be at all concerned or worried. So I appreciate this book because it remined me to take the reigns (no one else will or can) and I plan to speak to my son’s pharmacist today about his other daily perscriptions, just to make sure that its okay to take… I plan to get more knowledgeable about nutrition (just like the author did) but most of all I plan to let my son play the sports he loves because activity is so important (the author loves to dance, my son loves to try and ice skate like his big sister).

This book is a very quick read, its almost like you are having a conversation with a friend over coffee. It calmed me down, it gave me direction and it was available on my kindle in seconds. THANK YOU!!!!

5.0 out of 5 stars great down to earth read. May 31, 2012


Format:Kindle Edition|Amazon Verified Purchase

This book and the author was very informative and so close to my situation that I felt at timess, I wrote it myself. There is so much information included, along with so many web sites to continue my own research. I want to thank this author for her down to earth style of writing!

Back to the cardiovascular scare.  There is no, zero, zilch history of heart disease in my family BUT (as we all know), I do have Chronic Kidney Disease. That moves me up a notch for developing heart problems. According to the U.S. National Library of Medicine, ckd may be the cause of the following heart and blood vessel complications:

(Diagram  by  Nucleus Medical Art, Inc./Getty Images)

I was worried, but keeping my fear under control thanks to Bear and my good buddy, Joanne Melnick. – one with hugs and kisses, one with common sense (e.g.  Are you in the hospital?  No? Then it’s not an emergency.)

By the way, you can read more about ckd at:

Here’s what happened.  I needed pre-op clearance for the cataract surgery. My trustworthy primary care doctor was unavailable, so her lovely and efficient physician assistant made an appointment for me with the nurse practitioner in the practice.  This woman asked her own physician assistant to perform an EKG on me – twice since she didn’t like the results of the first one.

I didn’t know the np., but was more than a bit disconcerted that she arrived late and had not looked at the notes, did not believe me when I pointed out on the ophthalmologist’s request that I needed an EKG and asked my pcp’s p.a. to verify, and – here’s the worst one – was visibly shaken at the EKG results.  Okay, maybe I was annoyed when I walked in (none of this was taken care of in a timely fashion despite my phone calls so it ended up being a terrific rush), but if anyone should be upset at the results, shouldn’t it be the patient?

The practice provided cardiology recommendations since it was clear seeing one was my next step. I called the closest one hoping they could get me in before my scheduled surgery. Southwest Desert Cardiology’s Brittany had me in the next day.  Their Dr. Kethes C. Waram answered every single one of my numerous questions (Hey, this is me.) and scheduled a stress test for the next day after reading the results of the EKG I’d been given in this office.  Dr. Duong wandered into the examining room while I was there and explained that EKGs can be interpreted from different aspects. While the np. used electrodes on many different parts of my body, the cardiologist concentrated on those areas nearer the heart. These EKG results were far less worrisome, but there still was an abnormality in one part of my heart function they wanted to explore.  Hence, the stress test. (The photo to the left is not my EKG and is for demonstration purposes only. Courtesy of Pharmacotherapy Publications via

Dave made me very comfortable during that test. He even supplied a blanket since nuclear medicine rooms need to be kept very cold. I was injected with a slightly radioactive dye, but was assured this went nowhere near the kidneys and was so safe that I didn’t even have to check with the nephrologist about its use.

The test results came back normal. According to Dr. Waram, an EKG may be too sensitive to female hearts.  I’m having trouble verifying that via research, but I have to admit I had no symptoms and no results. I wonder why the np. didn’t explain that so I wouldn’t worry about the possible diagnoses (infarction, which mean heart attack, was one of them) on the EKG print out she gave me.

Moral: Go to doctors you know or have an immediate affinity with.  I didn’t know any of these doctors, but was immediately frustrated with the np, while I immediately felt comfortable with Dr. Waram.  Is this sound medical advice?  Hardly, but it makes me feel better should I have to see that doctor again.

Of course, if you have no affinity with someone who is the best doctor for you, ignore my advice.  I’ve done that myself.  The nice thing about advice is that you don’t have to take it.

Until next week,

Keep living your life!