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!

Then Why Wait?

paul-peckIt’s that time of year again, ladies and gentlemen. Time for what, you ask. Well, yes, it is almost time for Halloween (and my fellow writer brother’s Halloween birthday) but it’s also time for your flu shot… or jab, depending upon which part of the world you’re in. I’ve written before about why it’s important to have this protection, especially if you’re getting older – like me. But I don’t think I’ve written about why it’s a good idea to wait.

“’If you’re over 65, don’t get the flu vaccine in September. Or August. It’s a marketing scheme,’ said Laura Haynes, an immunologist at the University of Connecticut Center on Aging,” in the same NPR article referred to later in this blog. Considering the information my own immunologist gave me, I have to agree. But, here we are back to what my cousin calls my probing question: why?

According to the CDC (Centers for Disease Control and Prevention) at http://www.cdc.gov/flu/about/season/flu-season-2016-2017.htm:

“Getting vaccinated before flu activity begins helps protect you once the flu season starts in your community. It takes about two weeks after vaccination for the body’s immune response to fully respond and for you to be protected so make plans to get vaccinated. CDC recommends that people get a flu vaccine by the end of October, if possible. However, getting vaccinated later can still be beneficial. CDC recommends ongoing flu vaccination as long as influenza viruses are circulating, even into January or later.”

Wait a minute. How do the private companies that produce the flu vaccine know what strains to include protection against? NPR (National Public the shotRadio) at http://www.npr.org/sections/health-shots/2016/09/15/493982110/yes-it-is-possible-to-get-your-flu-shot-too-soon has something to say about that:

“To develop vaccines, manufacturers and scientists study what’s circulating in the Southern Hemisphere during its winter flu season — June, July and August. Then, based on that evidence, they forecast what flu strains might be circulating in the U.S. the following November, December and January, and incorporate that information into flu vaccines that are generally ready by late July.”

Nope, still doesn’t answer my question.  I decided to turn to CNN at http://www.cnn.com/2016/09/26/health/wait-for-flu-shot/ :

“”… antibodies created by the vaccine decline in the months following vaccination “primarily affecting persons age 65 and older,” citing a study done during the 2011-2012 flu season. Still, while ‘delaying vaccination might permit greater immunity later in the season,’ the CDC notes that ‘deferral could result in missed opportunities to vaccinate.’”

This is in keeping with what my own immunologist and my PCP (primary care physician) both warned me. Bear is 70. I’m close to it. We won’t be having our inoculations until later in October. Which brings us around to the question of why have the flu shot at all?

FullSizeRender (3)The England’s Department of Health chart included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2  partially answers this question:

Even if you feel healthy, you should definitely consider having the free {In England, that is} seasonal flu vaccination if you have:

  • a heart problem
  • a chest complaint or breathing difficulties, including bronchitis or emphysema
  • a kidney disease  {I bolded and italicized this for obvious reasons.}
  • lowered immunity due to disease or treatment (such as steroid medication or cancer treatment)
  • a liver disease
  • had a stroke or a transient ischaemic attack (TIA)
  • diabetes
  • a neurological condition, for example multiple sclerosis (MS) or cerebral palsy
  • a problem with your spleen, for example sickle cell disease or you have had your spleen removed.

I found this little nugget that’s more emphatic about why Chronic Kidney Disease patients need to have the vaccine in SlowItDownCKD 2015:

DaVita at http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837 tells IMG_2980us,

‘Immunizations may prevent people from contracting other diseases, infections and viruses. The immune system of a person with chronic kidney disease (CKD) becomes weakened, making it difficult to fight off many diseases and infections. Patients with CKD may become more susceptible to illness and even death if they do not receive regular immunization treatment. Getting the proper immunizations is an essential part of a person’s kidney care.’”

You’ve probably heard that there are different strains of the flu. I went to England’s National Health Services site at http://www.nhs.uk/Conditions/vaccinations/Pages/how-flu-vaccine-works.aspx to discover what they are:

“There are three types of flu viruses. They are:

  • type A flu virus – this is usually the more serious type. The virus is most likely to mutate into a new version that people are not resistant to. The H1N1 (swine flu) strain is a type A virus, and flu pandemics in the past were type A viruses.
  • type B flu virus – this generally causes a less severe illness and is responsible for smaller outbreaks. It mainly affects young children.
  • type C flu virus – this usually causes a mild illness similar to the common cold.

Most years, one or two strains of type A flu circulate as well as type B.”

A new site for me, but one I suspect I’ll be returning to in the future, Public Health at http://www.publichealth.org/public-awareness/understanding-vaccines/vaccines-work/ explains how a vaccine works:

virus“A vaccine works by training the immune system to recognize and combat pathogens, either viruses or bacteria. To do this, certain molecules from the pathogen must be introduced into the body to trigger an immune response.

These molecules are called antigens, and they are present on all viruses and bacteria. By injecting these antigens into the body, the immune system can safely learn to recognize them as hostile invaders, produce antibodies, and remember them for the future. If the bacteria or virus reappears, the immune system will recognize the antigens immediately and attack aggressively well before the pathogen can spread and cause sickness.”

I’ve already had something. I don’t know it was, but it felt like a little bit of a preview for the flu and it was awful. When I become ill, I can be down for anywhere from three to six weeks.  This time? Probably 10 days which, by the way, is the usual run for the common cold. Was it a cold? Strain C of the flu? I don’t know, but you can bet it reinforced that I’ll be getting that flu shot. Why go for more misery if I can help it?

Until next week,FullSizeRender (2)FullSizeRender (2)

Keep living your life!

Are you kidding????? Again??????

MenorahGuess what I have.  No, it’s not a Chanukah gift from Bear (although I’ve already gotten one of those). Hang on, I’ll give you a hint: I got it even though I took my annual flu shot.

Yep, this is yet another year I’ve come down with the flu despite having been vaccinated.  I realize that the vaccine only covers the anticipated strains of the flu for a particular season, but how is it I manage to get that strain… the unanticipated one… so often?

This week is the beginning of Chanukah. For those of you who celebrate, I wish you the joyous glow of the season all year round. But wait, it’s also National Influenza Vaccination Week.

According to the U.S. government’s Centers for Disease Control and Prevention (CDC) at http://www.cdc.gov/flu/about/season/flu-season-2015-2016.htm,the shot

“National Influenza Vaccination Week (NIVW) is a national observance that was established to highlight the importance of continuing influenza vaccination…. The timing of flu is very unpredictable and can vary in different parts of the country and from season to season. Most seasonal flu activity typically occurs between October and May. Flu activity most commonly peaks in the United States between December and February.”

We’re deep into it now. Well, then, why do I need to keep taking this vaccine that seems to be the wrong one for me each year?

DaVita at http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837 tells us,

“Immunizations may prevent people from contracting other diseases, infections and viruses. The immune system of a person with chronic kidney disease (CKD) becomes weakened, making it difficult to fight off many diseases and infections. Patients with CKD may become more susceptible to illness and even death if they do not receive regular immunization treatment. Getting the proper immunizations is an essential part of a person’s kidney care.”

This tidbit from http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf, which is the website of the Southeastern Kidney Council, Inc. was even more direct.

  • Cardiovascular disease is the leading cause of death among patients with CKD
  •  Infectious diseases are the second most common cause of death among cause of death among patients with CKD

fit the fluIt’s here now. So what do I do about it? I was truly surprised at the OTC (over the counter) medications my former nephrologist recommended to me.  Tylenol Cold?  A steady regime for four days?  This for a CKD patient who has taken ten Tylenol in the last eight years?  But that’s what the man said.

Dylsem Cough Suppression was another OTC he recommended.  (Not the one with the ‘d’ on the label; that could raise your blood pressure.) Then there was the Benedryl that came with a caution not to take it until I was going to sleep. It would knock me out. Oh, and the Mucinex.

The one recommendation I got a kick from was hot tea with lemon and honey (I actually asked him if he knew my mother, but I don’t think he heard me.) laced with whiskey. This for someone who doesn’t drink?

It occurred to me (I do forget this and need to remind myself repeatedly) that when the media refers to the elderly in their public service announcements about the flu, they mean people over 65.  That means me.  I had not been paying attention to any health warnings for the elderly because they didn’t apply to me, or so I thought.  Hah!  Reality smacks me in the face again.

Let’s say you’re one of the lucky ones who has not yet gotten the flu and want to keep it that way. According to Healthfinder.gov, Office of Disease Prevention and Health Promotion, you can protect yourself by doing the following, in addition – of course – to being vaccinated:the flu ends with you

  • 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

Note: There is a technical error on their page right now, so you won’t be able to click through.

Knowing me, you’ve probably figured out I just couldn’t watch movies and read while I was sick. Nope, I needed to work. So I did. The print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 now has an index. This new, improved version (Sorry, no crackerjack prize in the box. Uhhhh, you won’t get that joke unless you’re a bit older.) should be available on both Amazon.com and www.BarnesandNoble.com this week.

That is in plenty of time for Chanukah. Remember, there are eight days that the holiday is celebrated. And I’m working on the index for print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, so it will be available before Christmas.

IMG_1398

I like giving you gifts. If you already bought the print copy without the index, email me at SlowItDownCKD@gmail.com and I’ll be very happy to send you the index.

And let’s not forget about What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Consider that an easy introduction for the newly diagnosed and their friends and family.

Book CoverI think I feel another The Book of Blogs: Moderate Stage Chronic Kidney Disease book coming on. Eeeek! Let’s wait until after the New Year to deal with a title for that one.

I wanted to remind you to use the search function if you have the digital version of any of the books. If you need a little reminder or tutorial as to how to use that, email me. I’ll be glad to help.

This year is flying by. The months flew by. Even today flew by.  Is it that I’m older and everything takes longer?  Or is it that I’ve learned to make the most of the hours in the day…month…years. Whatever it is, thank you for letting me share some of your time each Monday.

Until next week,

Keep living your life.

Another Infection? 

I noticed I often develop an infection at the site of a simple cut, one I treated with antibiotic when I first received it. You know I’m a writer, but did you know I like to write long hand sometimes?  I think those yellow legal pads have extra thin paper made purposely for paper cuts.

There are times I am hopeless in the kitchen, too.  That’s usually when I have my mind on my writing or the Victorian murder mystery I’m reading.  firworksWell, lately I’ve had my mind on my daughter’s new career, my step-daughter’s promotion to first female head instructor for Krav Maga here in Phoenix, the publication of my new book and getting the third one ready for print, my almost son-in-law’s new career {another new career!}, or our trip to Meteor Crater.

I digress.  Back to infections. This made no sense… until I remembered that my immune system was already compromised by my Chronic Kidney Disease.  OMG!  As if we didn’t have enough to deal with concentrating on diet, exercise, sleep, rest, inoculations, creatinine and GFR monitoring. Might as well take a deep breath and explore this one, too.

So, just what is an infection anyway?  According to the Free Dictionary (Medical) at http://medical-dictionary.thefreedictionary.com/, it’s

 invasion and multiplication of microorganisms in body tissues, especially that causing local cellular injury due to competitive metabolism, toxins, intracellular replication, or antigen-antibody response.

downloadUhhh, this definition may have exacerbated our confusion so we’ll need a few more definitions. I’d say we all know that toxins are poisons, and microorganisms are those teeny, weeny little living things you can’t see with the naked eye.

As for intra – Hunter College Latin and Greek roots class a million years ago to the rescue – that means within. Add cellular and you have within the cells. Add replication and you end up with bacteria making copies {replication} of itself within the cells to the best of my knowledge.

Undergoing immunology treatments myself, I remember the phlebotomist in the office telling me that the layman’s term for antigen-antibody reaction is allergic reaction.

And now?  Oh right.  What do frequent infections have to do with our already compromised immune system.

This is what I found on DaVita’s site at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/infections-and-chronic-kidney-disease/e/4734

People with kidney disease  can be more prone to infection because of related conditions such as diabetesinadequate calorie and protein intake, and the access site can be vulnerable to infection.

Now, we all know I’ve been successfully fighting to stay pre-diabetic for years, so I’m not a diabetic.  And we all know I’m at stage 3A, so I have no access site.  That’s something you encounter when you start dialysis at stage 5.

Ahhhh, but I am restricted to five ounces of protein a day and 1200 calories. Neither of these is inadequate for a woman my age and weight.  Or are they?ham

I didn’t know, really. But a site with the unlikely name of Breaking Muscle seemed to.  I found them at http://breakingmuscle.com/nutrition/how-much-protein-do-you-need-science-weighs. Their answer? .36 grams/pound/day.

Apparently, you just multiply what you weight by .36.  Let’s say I weighed 125 pounds {Will you please get up off the floor and stop laughing?}. I’d need to eat a minimum of 45 grams of protein. That’s less than two ounces.

What about the days I just don’t feel like eating any protein?  It’s surprising how you can lose your taste for it.  Or maybe I’m just not bothering to consume enough calories each day.  Considering that I’m not underweight {hah!}, these are both hypothetic situations.

Kidney Service China at http://www.kidneyservicechina.com/ckd-basics/1546.html explained the connection between CKD and infection this way.

Besides {proteinuria}, damaged kidney can cause lots of toxins and wastes’ accumulation in blood, while these substances will be transplanted to everywhere of our body. Many of them are harmful to the organs and tissues of our body, and they can cause damage to our immunity. For example, marrow is a major organ of our immune system, while some toxins can inhibit its function of producing cells.Blood Oxygen Cycle Picture 400dpi jpg

This makes sense to me. I visualize it as bacteria streaming into your cut from the outside, while the already overloaded blood is doing its darnedest to keep them out… and not succeeding in its sluggish, polluted state.  Hope that’s not too violent an image for you.

Most of the other information I was able to dig up had to do with ESRD {end state renal disease} and the inflammatory state of your body at this stage.  I did find it interesting, but we’re not quite there yet – thank goodness.

The_Book_of_Blogs-_M_Cover_for_KindleChanging the subject: the digital version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is free today.  That’s right; the digital version of the book is free today. Why?  As a reward for reading the entire blog instead of just the first few paragraphs.  Got you!  It’s because today is my birthday and I wanted to give you a present.  Also because I couldn’t think of a better way to get the word about moderate stage chronic kidney disease out there.  Thank you for celebrating with me.

Oh, the print copy of the book is being released today, too.  Now that’s a present for me.  Both are available on Amazon.com.  Do let me know what you think of the cover.

And, please, write a review after you’ve read the book. I’ve had some of my 17, 000 readers in 109 countries tell me they aren’t writing a review because they don’t want their name in plain view for the entire world to see.  Guess what? You can sign as anonymous, or use your nickname,  or make up an alter ego name and use that.

Until next week,

Keep living your life!

A Meta Is Going to Come? Shouldn’t That Be A Change is Going to Come?

Victorian clockYou may notice the blog is late today.  Blame the flu.  Scratch that.  I’ll take responsibility.  While I was debating whether or not it was time to take the flu shot all Chronic Kidney Disease patients are urged to take each year, the flu found me.  No kidding about this compromised immune system business.  I considered this a light case, but was just ordered back to bed… after over a week of laying low.

Keep in mind that this year’s flu’s vaccine only covers three or four of the many strains around, so you may end up with the flu even after having the shot.  My family doctor’s advice?  Once you’re well again have the inoculation and protect yourself from as many strains as you can.flu shot

Dr. Jamal Attalla is my new nephrologist and also a Landmark Graduate.  That’s where I met him way before I even knew he is a nephrologist.  I like that he is non-alarmist, non-paternalistic and easy going.  When I told him that 50 as an eGFR reading was my panic point, he very gently reminded me that readings will vary within a range depending on the day, your hydration, etc. – all variable factors.  I knew that.

Then he reminded me that after 35, we lose about 1% of our kidney function yearly.  I was under the impression it was ½% annually and thought that started at a much later age.  Finally, we talked about my reading of 48%. But I understood better now how that happened and am confident I can raise it again before I see him a year from now.

Enough about me, let’s get to that metabolic syndrome.  Oh, wait, that’s about me too.

Kibow has sent me quite a bit of information about using their probiotics as a method of treating chronic kidney disease.  I need to warn you that this is not an endorsement of their product.  I don’t know enough about it yet.

Along with their press release, they sent me a booklet entitled Kibow’s Educational Guide to Probiotics and Kidney Health written by Natarajan Ranganathan, Ph.D. and Henry D’Silva, M.D.  In the booklet, they discuss metabolic syndrome.  This part of that discussion lists five conditions in metabolic syndrome.  Only three are necessary to diagnose the syndrome:

“1. Abdominal obesity

2. high blood pressure

3. high blood sugarapple shaped

4. low levels of ‘good’ HDL cholesterol

5. high triglycerides”

I’d first heard about metabolic syndrome two years ago when I met an Aussie nurse at a friend’s house.  She assumed I knew all about it.  When I told her I didn’t and asked her to explain, she promised a coffee date to do just that.  We never had the date since she was called home quite suddenly and I forgot about the syndrome.

Then Kibow sent me their material.  Except for the high triglycerides and low levels of ‘good’ HDL cholesterol, I have all these conditions.  Granted, the abdominal obesity is self-diagnosed but you’d have to be blind (and I’m not yet) to miss it.

So what’s the big deal about metabolic syndrome?  By the way, meta does mean change.  According to The National Institutes on their Institute of Heart, Lungs, and Blood page at http://www.nhlbi.nih.gov/health/-topics/ms/:

“The term ‘metabolic’ refers to the biochemical processes involved in the body’s normal functioning. Risk factors are traits, conditions, or habits that increase your chance of developing a disease.”

The National Institutes is a fount of information on all topics that deal with your health.

heart attackAgain, the same question: what’s the big deal about metabolic syndrome?  Usually it’s stated backwards for Chronic Kidney Disease patients.  The MayoClinic at http://www.mayoclinic.com/health/metabolic%20syndrome/DS00522  tells us:

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

Sometimes, Chronic Kidney Disease is mentioned as one of the diseases this syndrome puts you at risk for.  We, however, already have that, so why should we try to either avoid the syndrome completely or ameliorate it if we do have it?

Before I was diagnosed with Chronic Kidney Disease, I joyfully proclaimed Dr. Andrew Weil as my health guru and actually had pretty good health following his suggestions.  This is what he has to say,

“Doctors may also prescribe medications to lower blood pressure, control cholesterol or help you lose weight. Insulin sensitizers like Glucophage (Metformin) may be prescribed to help your body use insulin more effectively. It lowers blood sugar, which also seems to help lower cholesterol and triglycerides as well as decreasing appetite. The side effects of Metformin (often temporary) include nausea, stomach pain, bloating and diarrhea. A more serious side effect, lactic acidosis, can affect those with kidney or liver disease, severe heart failure or a history of alcohol abuse and is potentially, though rarely, fatal. Aspirin therapy is often given to help reduce risk of heart attack and stroke.”

Notice the mention of kidney damage and that of aspirin therapy.  We just can’t take the chance.

Take a look at his article yourself for even more information: http://www.drweil.com/drw/u/ART03193/Metabolic-Syndrome.html.Dr. Andrew WEil

Sometimes you just have to use your common sense.  We ARE already at risk of heart disease, diabetes, and high blood pressure as CKD sufferers.  Why would we take a chance of doubling our risk of developing these medical problems?  Don’t forget that while diabetes and high blood pressure can cause CKD, the reverse is true, too.

Kindle has offered me the opportunity to correct two spelling errors in the book.  What I want to know – since they are simple words – is how did spell check (and me for that matter) miss these in the first place? I find it amazing that not one single medical term was misspelled, but these two common words were.Book Cover

Keep an eye out for a new print/digital program they’ll be announcing.  It’s theirs so I’m not at liberty to discuss it until they announce it.  That is a bit of a tease, isn’t it?

Exercise is an essential part of slowing down the progression of your CKD, so kudos to Abby Wegerski (that’s my baby!) and her instruction partner, Tyler Robbins, on the One Year Plus dance celebration for Sustainable Blues this past weekend!

Until next week,

Keep living your life!blues

It’s Not Just For Eating

There’s not that much to report on the book, since you already know that sales have been steady.  I’m so close to paying off the costs of printing the book that I can taste it.  Then I’d like to recoup what I paid for having it digitalized and for all the donations I’ve made. This is Book Coveralmost like a game to me because I know I’m just going to take any profits and transform them into books for donation anyway, but it keeps me sharp!

Updates on medical issues here.  I still have macular degeneration – as if it were just going to disappear – and started taking the only two supplements I can with Chronic Kidney Disease.  I’m talking (okay, writing) about the supplements in the comprehensive pill my ophthalmologist offers in an attempt to slow the eye disease down. I’d wanted to take full advantage of the entire 25% chance of slowing the disease that this pill offers, but my kidneys come first.

It turns out Bear CAN wait for the surgery since it’s kind of a last ditch effort to save mobility and he’s not there yet… thank goodness.  Now to find some good pain management for him.  Thank you to Alex Gilmore for showing up to stand for us at the neurosurgeon’s office.  He asked our questions in a form this doctor could understand.  It’s interesting that once Alex was there and we explained why, the doctor started couching his responses to the questions in language that WE could understand.

I’m eager to get into today’s topic: liver, or rather fatty liver disease.  I vaguely remember this showing up on an MRI some time ago and my primary care physician – the ever vigilant Dr. H. Zhao – telling me about it.  That’s when I was obsessed with weight since my nephrologist had just explained I would do better at slowing down the progress of the CKD if I lost weight.  My first response to Dr. Zhao? “That’s fat, too?”

liverOnce she stopped laughing, she explained that many people have fatty livers but you have to be careful about it before you end up with (in my case) NAFLD or Non-Alcoholic Fatty Liver Disease.  Why am I writing about it now?  Beats me, but I dreamed about it so I figured that was enough reason to explore it.

So, we know fat gets deposited in the liver and too much is no good.  The question is how much is too much?  According to WebMD at http://www.webmd.com/hepatitis/fatty-liver-disease,

“Some fat in the liver is normal.  But if fat makes up more than 5%-10% of the weight of your liver, you may have alcoholic or nonalcoholic liver disease.  In some cases, these diseases can lead to serious complications.”

Let’s backtrack a little to find out why the liver is important in the first place.  According to the Mayo Clinic at http://www.mayoclinic.org/liver-disease/?mc_id=comlinkpilot&placement=bottom, these are the functions of the liver:

“Breaking down harmful substances

Removing waste products from the blood

Storing nutrients and vitamins

Moderating chemical levels in the body”

Take a looks at the second function again.  Does it sound familiar?  Yep, that’s one of the functions of your kidneys, your not functioning at capacity kidneys.  You’re already having trouble because one of your organs can’t do its job adequately, you certainly don’t need an additional organ responsible for the same job to be compromised.  Ah, that must be why I’m writing about fatty liver disease on a Chronic Kidney Disease blog.Location of Kidneys

By the way, a liver specialist is called a hepatologist.   That comes from the same word root as hepatitis. Remember I’d urged you to make certain you took the series of hepatitis B inoculations since your kidneys are already comprised? And suggested you might want to be checked for any hepatitis C in your blood work?  Hepatitis is from the same Greek word root, hepa which means liver.  Just in case you’re interested, the University of Hawaii at Manoa has a fairly inclusive list of medical word roots at http://manoa.hawaii.edu/learning/PDFhandouts/StudySkills/Word%20Roots.pdf .  This is right up my alley!

Okay, maybe we need to know a little more about the liver.  It’s a large organ, in fact, the second largest in your body. You’ll find yours under your rib cage on the right side of your body.  My perverse sense of humor found it funny that the kidneys are shaped like – well – kidney beans while your liver is shaped sort of like a football that’s flat on one side. (Can you see the mental image I conjured up of the kidneys tossing the football back and forth?  Can’t really happen but it’s funny… if you’re me, that is.) Oh, yes, weight: three pounds.

Like CKD, NAFLD is mostly a silent disease; it has no symptoms.  When symptoms do occur, it seems to me that they would be hard to pin down as NAFLD since it’s not an array of these symptoms, but any of them. Then again, I’m not a doctor.

“fatigue, weakness, weight loss, loss of appetite, nausea, abdominal pain, spider-like blood vessels (Hey, I have those!), jaundice, itching, edema, ascites {swelling of the abdomen} and mental confusion.”

Thank you to the American Liver Foundation at http://www.liverfoundation.org/abouttheliver/info/nafld/. This is a nifty little fact sheet that is simple to understand.

Then I got to wondering about why this disease could be dangerous.  It’s the possible progression that makes it dangerous.  You’re told you have a fatty liver (AFLD is fatty liver disease caused by alcoholism), you don’t lose weight {if you’re overweight or obese}, lower your cholesterol and triglycerides, control your diabetes {if you have it} or avoid alcohol, and the disease worsens. NAFLD

Your liver swells.  This is called steatohepatitis.  That may cause cirrhosis (Quick!  Go to the University of Hawaii at Manoa’s medical word root site! Or just read on.) or scarring over a long period.  The cirrhosis could eventually cause liver cancer or failure.  The saddest part of all this is that some people develop NAFLD or AFLD for no reason at all.

The good part (There’s a good part?) is that a healthy diet and regular exercise – just like CKD, isn’t it? – may prevent scarring or even reverse it if the disease is caught early enough.  Since there usually aren’t any symptoms, fatty liver disease is most often uncovered by your blood tests.  A high level of liver enzymes could be the tip off.

I almost forgot to mention that Alcoholic Fatty Liver Disease has another name: NASH.  This stands for Nonalcoholic Steatohepatitis.  My parting gift to you today: steat is a word root meaning fat.

Until next week,

Keep living your life!

Keep That Liver Lively

It feels so good to be (relatively) healthy again. I’ve spent the last several weeks being tested, running to doctors, and feeling like I just plain didn’t want to move… not even for a good cup of coffee.  I like the way I feel now.  Maybe I rest more than I’ve been used to, but I get to do whatever I want again.  That’s the way to live.  I like it so much that I intent to keep my life this way.YGCnpYEUFRtlrF00_f9frLXF_JWiNWNHS9AVZmM1PxI

And that’s why I’m taking the series of Hepatitis B inoculations that are recommended for anyone with a compromised immune system. Chronic Kidney Disease presents us with one of those. Aren’t we just the lucky ones (she wrote with a keyboard that dripped sarcasm)?

“Hepatitis B is one type of hepatitis – a liver disease – caused by the hepatitis B virus (HBV). Hepatitis B spreads by contact with an infected person’s blood, semen or other body fluid. An infected woman can give hepatitis B to her baby at birth,” according to MedlinePlus, a service of the U.S. National Library of Medicine, National Institutes of Health located online at: http://www.nlm.nih.gov/medlineplus/hepatitisb.html.

liverLet’s backtrack for a little etymology here.  The Online Etymology Dictionary at http://etymonline.com/index.php?allowed_in_frame=0&search=hepatitis&searchmode=nl  shows the following: “hepatitis (n.)  1727, coined from Greek hepatos, genitive of hepar “liver,” from PIE root *yekwr- (cf. Sanskrit yakrt, Avestan yakar, Persian jigar, Latin jecur, Old Lithuanian jeknos “liver”) + -itis “inflammation.” While this is probably too much information, we can see that the term comes from the Greek for liver and the Latin for inflammation, and was first commonly used in 1727. The key word here? Liver.

Okay then, what’s the big deal with the liver you’re probably asking. While it performs over 500 different functions to keep your body going, one of its primary functions is to filter your blood – just like your kidneys.  If your kidney function is already compromised, you’ve got to be careful not to let your liver function become compromised, too.

We’ve all heard the stories about people with an alcohol dependency dying of cirrhosis – permanent scarring of the liver.  This is a Bubba Miseh. That’s Yiddish for an old wives’ tale.  You can have liver damage from any number of causes. Hepatitis B is one of them.

“Hepatitis B is a serious liver infection caused by the hepatitis B virus (HBV). For some people, hepatitis B infection becomes chronic, leading to liver failure, liver cancer or cirrhosis — a condition that causes permanent scarring of the liver.”  That’s from the Mayo Clinic at: http://www.mayoclinic.com/health/hepatitis-b/DS00398.  I especially recommend their site because it is written in the English we all know and is easily understood.

According to the handout from the U.S. Department of Health and Human Services’ Center for Disease Control and Prevention which I was given by my doctor’s medical assistant, the inoculations come in sets of three.  I’ve had the first and was told to come back in a month for the second, with the third scheduled for a month after the second.  In other words, they are spaced over a period of six months.shot

But what if my primary care doctor hadn’t recommended these to me, how would I know if I have Hepatitis B?  According to MedicineNet.com at http://www.medicinenet.com/hepatitis_b/article, “Acute hepatitis B is the period of illness that occurs during the first one to four months after acquiring the virus. Only 30% to 50% of adults develop significant symptoms during acute infection. Early symptoms may be non-specific, including fever, a flu-like illness, and joint pains. Symptoms of acute hepatitis may include:

Those are fairly common symptoms for many illnesses and as many as half the people with this virus may not know they have it.  I might have been one of that 50%.  So might you.

For chronic (long term) Hepatitis B, like Chronic Kidney Disease, there are no symptoms until the damage is done and the liver starts to fail.

Am I urging you to be vaccinated?  No, you’re quite capable of making up your own mind.  Besides, as I keep mentioning, I’m not a doctor.  Did I start the Hepatitis-B inoculations?  Absolutely!  Life is sweeter than it’s ever been.  I want it to go on and on.virus

Talking about life going on, the project to bring Chronic Kidney Disease to the Native American reservations has a name: SlowItDown.  You can expect to see both a Facebook page and a Twitter account with the same name this week.

The National Kidney Foundation asked me to guest blog for them this month and I discussed the project there, too. The address for this is: http://nkfstayinghealthy.wordpress.com/2013/06/06/what-is-it-and-how-did-i-get-it-early-stage-chronic-kidney-disease-experiences/  The NKF expects to promote it on their own Facebook page tomorrow. While this is not the first time they’ve asked me to write for them, each time they do I understand the honor it is and I thank them for the opportunity to spread CKD information via their site.

You already know DaVita (DaVita.com) has offered to supply Chronic Kidney Disease Educators to the tribes within sixty miles of Phoenix.  I have been speaking with the Health Directors of several tribes, but need help getting on the reservations.  I’ve found one or two reservations with Diabetes Education Program that we could easily piggyback on, but none with Chronic Kidney Disease Education Programs.  My appeal to my readers? Please, if you know anyone who is Native American, have him/her email me at myckdexperience.com or ask them for their number or email address and send it to me.

Book CoverIt’s funny: this blog started as publicity for the book and yet I hardly mention it any more.  Thank you to those of you who have bought or recommended the book. Thanks to some lovely people I met at Landmark Worldwide (formerly Landmark Education) the book is now in British Columbia and at the Evans Community Army Hospital in Colorado.  Any way this news can be spread is a good way in my book.  Oh, I meant that literally and figuratively!

Until next week,

Keep living your life!