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!

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) 

https://www.aakp.org

MARCH IS NATIONAL KIDNEY MONTH (from AAKP’s website)

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

     http://www.kidneyfund.org/

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

www.nkdep.nih.gov

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

www.kidney.org

http://www.youtube.com/watch?v=s2U2iZQxkqI#t=1 (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)

www.kidney.niddk.nih.gov  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

www.rsnhope.org

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.

http://www.renalinfo.com/us

“… web site designed and developed to provide information and support to those affected by kidney failure. Renalinfo.com 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!

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

By HELEN A. VIOLA

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: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001503/

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 Medscape.com)

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!

To Sleep: Perchance to Dream

First: credit where credit is due.  Thanks to the Bard, William Shakespeare, for providing the title for today’s blog.  Anyone recognize it from Hamlet’s soliloquy?

Although I’d planned to write about my odd experience with the threat of heart disease in next week’s blog, people have already started asking what heart disease has to do with Chronic Kidney Disease. The American Association of Kidney Patients has an easily understood, comprehensive article about just that. In a nutshell, “Individuals with kidney disease are at a high risk of developing hardening of the arteries resulting in heart attacks, heart failure and strokes.” I’d recommend reading the entire article at: http://www.aakp.org/aakp-library/heart-disease-and-kidney-disease/

In addition, although I am not astute enough to completely understand the studies I read about women and EKG testing, there does seem to be conclusive evidence that the female heart IS more sensitive to the EKG (just as Dr. Waram told me) and could provide a false positive for heart disease. Phew!  I feel like I dodged a bullet on that one.

So, what is today’s blog topic? Sleep!  If you remember, I’d had a sleep study just before the EKG panic but never got to write about sleep apnea and CKD.  You should know that I’d spent over four years trying to convince my nephrologist that I was tired because the CKD prevented me from producing enough red blood cells and he spent the same amount of time trying to convince me that wasn’t why I was always so tired.

In retrospect, it’s surprising that neither one of us ever considered sleep apnea.  It wasn’t until one of my many daughters was diagnosed with OSA that I started wondering if I could have it.  Of course, then I spent some time wondering if I were going to consider myself a victim of whatever health problem anyone I knew had. Once I got beyond that, help was on the way.

I found a study at http://www.medscape.com/viewarticle/538872 which clearly links sleep apnea and hypertension. Dr. John J. Sim makes the connection very clear:

“We think there may be a causative factor here; that sleep apnea may be causing direct glomerular injury,” Dr John J Sim (Kaiser Permanente, Los Angeles, CA) told renalwire . “We already know that sleep apnea causes hypertension and that hypertension causes kidney disease.”

If some degree of causality can be shown, it’s possible that treating sleep apnea may slow the progression of kidney disease, the authors speculate.

This is an older study from 2005, but it seems to lead the way to further proof that sleep apnea  does affect CKD. It’s also the only one I could understand {sometimes I do wish I were a doctor} which even mentions glomerular injury.

I think we need a definition of sleep apnea – also called obstructive sleep apnea or OSA – before we go any further, preferably a non-medicalese one. The simplest definition I could locate is from Yahoo! Health: “Obstructive sleep apnea is a condition in which a person has episodes of blocked breathing during sleep.” I should add the episodes usually last 10 seconds or longer.

During those episodes, you wake yourself up by gasping or snorting in an effort to start breathing again.  Now that I understand exactly what is happening, it’s sort of scary.  I hadn’t realized this could be serious.  But, being me, I’m not going to let it.  Hence, the sleep study. 

You don’t just walk into a sleep center to request one of these.  My family doctor, the ever vigilant Dr. H. Zhao of Deer Valley Family Practice, referred me to several pulmonologists – lung and respiratory tract specialists. I chose Dr. Loreman of Central Arizona Medical Associates and was glad I did since I found her personable, informative and easy to engage in a specific discussion about my health. Her suggestion?  A sleep study.  Off I went to make my appointment with Valley Sleep Center.

While they did a terrific job of monitoring my sleep patterns during different sleep states, I was unimpressed.  I don’t know what I expected, but they hooked me up, sent me to sleep, then woke me up to put on a CPAP and sent me back to sleep.

According to WiseGeek.com, “A CPAP machine has a small box connected to tubes through which air flows. The tubes are connected to a mask worn on the face. Straps around the mask fit it to the face over the mouth and nose. For those with sleep apnea, the CPAP is used at night during normal sleep.”

A CPAP was recommended for me. I am not thrilled and made it clear I’d like to try an oral {sometimes called dental} device to see how effective that is before I agreed to the CPAP.  I have reservations about being hooked up to a machine.  Those are my personal reservations.  Many, many people are perfectly comfortable with the CPAP.

There are several different types of dental appliances, so I’ll have to tell you about them at another time.  I don’t know anything about them yet. I had to postpone my appointment with this dental specialist since I had the emergency appointment with the cardiologist at the same time {see next week’s blog}. But before this appointment, there is one of   the two cataract surgeries.

Looks like my body is catching up to my chronological age.  It was bound to happen.  I just didn’t expect it all to happen in one month!!!!

Until next week,

Keep living your life!