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!

March and National Kidney Month are Hare, I Mean Here.

My wake up alarm is the song ‘Good Morning,’ and that’s exactly what this is.  The sun is out, it’s warm but not hot, I’m listening to some good music, and I’m alone in the house for the first time since Bear’s October surgery.  I am thankful that he is driving himself to his doctors’ appointments. That is progress!   desktop

Talking about progress, it’s National Kidney Month and you know what that means… a recap of many of the organizations listed in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease that may help with your Chronic Kidney Disease.  Ready?  Let’s start.

{I’m only including online addresses since this is on online blog.}


American Association of Kidney Patients (AAKP)


This is an advocacy group originally started by several dialysis patients in Brooklyn in 1969.  While they are highly involved with legislation, I see their education as the most important aspect of the group for my readers.

“Take some time and browse through our educational resources including our Resource Library that contains past and present published information from the American Association of Kidney Patients. Educate yourself on specific conditions, medicine, lifestyle improvement and get the latest news and information from the renal community.”

kidney-month-2014-v1  The American Kidney Fund

While they work more with end stage Chronic Kidney Disease patients, they also have an education and a get tested program.

“The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.”

National Kidney Disease Education Program

This is an example of the many videos available on this site.  They are also available in Spanish.

What is chronic kidney disease? Approach 1 A doctor explains what chronic kidney disease (CKD) is and who is most at risk. Learn more about diabetes, high blood pressure, and other kidney disease risk factors. Length 00:53  Category CKD & Risk

One of my favorites for their easily understood explanations and suggestions.  Their mission? “Improving the understanding, detection, and management of kidney disease.”  They succeed.

National Kidney Foundation (This is the link to their National Kidney Month Rap with Sidney the Kidney)

I have guest blogged for them several times and been glad to work with them whenever they need me.  The website is thoroughly helpful and easy to navigate. This is what you find if you click on ‘Kidney Disease’ at the top of their home page. What I really like about this site is that it’s totally not intimidating.  Come to think of it, none of them are, but this one feels the best to me.  (I can just hear my friends now, “Oh, there she goes with that spiritual stuff again.”  One word to them: absolutely!) Notice the Ask the Doctor function.

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)  National Institute of Diabetes and Digestive and Kidney Diseases Logo.

“Just the facts, ma’am,” said Sergeant Friday on an old television show and that’s what you get here.

This is their mission statement:

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

And let’s not forget

 Renal Support Network

This was initiated by a Chronic Kidney Disease survivor.  The part I like the best is the Hopeline.  While I have not called myself, I have referred people who were newly diagnosed and, well, freaking out.  I couldn’t tell them what the experience of dialysis is like, but these people can.

Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD)….  Call our Hopeline (800) 579-1970 (toll-free) Monday through Friday from 10am to 6pm (PT) to talk to a Person who has lived kidney disease.

Baxter Healthcare Corporation.

“… web site designed and developed to provide information and support to those affected by kidney failure. is supported through and educational grant from Baxter Healthcare Ltd, a company that supplies dialysis equipment and services to kidney patients worldwide.

They have all the information a newly diagnosed CKD patient could want and, while funded by a private company, do not allow paid advertisements.  Their site map is proof of just how comprehensive they are.

While many of the other sites offer their information in Spanish as well as English, if you click through the change language function here, you’ll notice there are many languages available.

Rest assured that these are not the only organizations that offer support and education.  Who knows?  We may even decide to continue this next week, although that’s so close to March 13th’s World Kidney Day that we’ll probably blog about that for next week.

I interrupt myself here to give you what I consider an important commercial message.  Remember that game I play about using the money from the book to pay off what I paid to produce the book so I can put more money into donations of the book?  There was a point when sales covered the cost of publishing.  Now they’ve covered the cost of digitalizing the book so it could be sold as an e-book.  Another milestone!  (Now there’s just about $15,000 worth of donations to pay off.)54603_4833997811387_1521243709_o

While I’m at it, I find I cannot recommend Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. but only because it was published in 2002.  The world of nephrology has changed quite a bit since then and continues to change daily. While I enjoyed the information, I’m simply not convinced it’s still applicable.

For those of you who are newly diagnosed, I sincerely wish these websites give you a starting point so you don’t feel so alone. (I’m sorry the book isn’t interactive.)

Until next week,

Keep living your life!

Neurology –> Neuropathy –> New To Me

With all the medical messes at my house lately, I hadn’t expected yet another one.  You’ve been reading about the established ones and how they affect Chronic Kidney Disease.  Here’s the new one: neuropathy.

I can’t tell you how long it took for me to simply pronounce the word correctly. I knew neuro comes from the Latin for nerve and pathy, also from Latin, is a “word-forming element meaning feeling, suffering, emotion, disorder, disease.” (Thanks for the help on pathy goes to The Online Etymology Dictionary at: There was no connect in my brain until my family doctor sent me to a neurologist.

Why you ask?  I wondered aloud in her office why I was feeling such tingling in both of my hands and, sometimes, my feet.  I found no discernible pattern to the tingling, although I could tell it was stronger in the hands than the feet.sad

Next thing I knew, I had an appointment with Dr. Maninder S. Kahlon at his Arizona Neurological Institute, better known as ANI, all the way out in Sun City.  That’s a bit away, but I agreed to the drive because Dr. Zhao recommended him so highly.  That’s also why I agreed to a male doctor when I usually prefer females.

This turned out to be a good move.  Dr. Kahlon is not only a good neurologist, but charming.  Now while that’s not usually my criteria for choosing a doctor, it was very necessary in this case since it was deemed necessary to have EMGs on both my upper and lower extremities.

EMG means Electromyography. Big help, huh? Back to basics (Yes, I do know how often I use that phrase, but let’s face it: you can’t build a house without a foundation.). According to eMedicineHealth at, “… electromyography involves testing the electrical activity of muscles. “

Next question: why in heaven’s name would anyone want to do that? I suspected it might have to do with a trapped nerve since I’d had carpal tunnel surgery 27 years ago and remembered a little bit of the process for diagnosing it.carpal tunnel at answered that one for me: “When muscles are active, they produce an electrical current. This current is usually proportional to the level of the muscle activity.”    

So did that mean I had carpal tunnel again?  Oh, sorry, carpal tunnel is when the median (middle) nerve in your wrist is trapped by the ligament.  Ligament surgery was pretty painful.  I’m hoping things have improved in the last 27 years… just in case, you understand.

Back to why.  I found an answer I could live with on my old friend The Mayo Clinic’s website at

“EMG results are often necessary to help diagnose or rule out a number of conditions such as:

  • Muscle disorders, such as muscular dystrophy or polymyositis
  • Diseases affecting the connection between the nerve and the muscle, such as myasthenia gravis
  • Disorders of nerves outside the spinal cord (peripheral nerves), such as carpal tunnel syndrome or peripheral neuropathies
  • Disorders that affect the motor neurons in the brain or spinal cord, such as amyotrophic lateral sclerosis or polio
  • Disorders that affect the nerve root, such as a herniated disk in the spine”

I was floored.  I hadn’t remembered that both my family physician and Dr. Kahlon explained this.  I only concentrated on the possible carpal tunnel.  Come to think of it, it would have had to be something else in my feet.  Lesson learned; you need to keep reminding yourself to listen to your doctors’ explanations even if you think you know the information already.

Scuttlebutt had it that this was a very painful test, but Dr. Kahlon distracted me with a constant stream of chatter about CKD, neurology, families, and even Landmark while he worked on my lower extremities. By the next day, we’re weren’t chattering anymore but having serious discussions.  This distracted me so much that I was barely aware of what he was doing.

Thank you, Dr. Kahlon from a stoic coward, which means I bear with the pain, but I hate the thought of it. This time, pain wasn’t a problem.

Time to tell you what the good doctor actually did to me. I was asked not to use any lotions or creams the days of the tests.  When we were ready to start, Dr. Kahlon asked me to lay down for the lower extremities test and sit up on the examination table for the upper extremities test.

EMG needlesFrom my side, the tests were simple.  First, electrodes were applied to different parts of my legs or arms (depending on which were being tested that day). Once he had recorded the readings from the electrodes, he pierced my skin with needles.  I cannot say any of this hurt, but there was some discomfort.

Bear had the test years ago and had expected me to come home in extreme pain.  Instead, I went to meet a friend for coffee one day and to the Landmark Center the other.  It really didn’t hurt.

Dr. Kahlon gave me the results of both days’ tests as well as those of the blood test he’d ordered for TSH, B12, folate, and vitamin D.  Apparently, a deficit of any of these could cause the tingling I had. None of my readings for these elements were out of range.

What I really got a kick out of was watching him use Dragon Medical to write his notes.  That’s the doctors’ version of the same program I’ve been struggling with since Christmas!

So far, I don’t need anything.  He suggested a follow up visit.  I suggested ten years.  He didn’t laugh.  I suggested a year.  He still didn’t laugh and told me six months would do.  I guess being on the borderline of having carpal tunnel is more serious than I thought.

How does this impact CKD?  There is medication that can help, but I didn’t want to discuss it yet since it is eliminated via the kidneys. I’ve become pretty good at doing without medication these days.  More on that should it come to a point when it’s a necessity.

Book news!  I have just paid off the cost for printing the book.  I’m going to keep this little game up, though.  Now I want to recoup the cost for converting the book to digital form.  You know I’m still going to keep donating, no matter how much I recoup or not.  I am thankful to have the money to be able to do this.Book Cover

Until next week,

Keep living your life!