Another Kind of Kidney Disease

While I’m still recuperating, I’ve had plenty of time to read Twitter articles, among other things. One topic I’ve been reading about is lupus nephritis. I think we’ve all heard of lupus, but just in case, here’s a definition from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064.

“A chronic inflammatory disease that is caused by autoimmunity. Patients with lupus have in their blood unusual antibodies that are targeted against their own body tissues. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system.”

Did you catch the mention of kidneys in the above definition? That’s where the nephritis part of the condition comes in. By now, we’re all probably tired of being reminded that ‘neph’ means relating to the kidneys (although in non-medical terms, it means relating to the clouds) and ‘itis’ means inflammation. Nuts! I just reminded you again. Let’s ignore that. So, lupus nephritis actually means

“… a kidney disorder [which] is a complication of systemic lupus erythematosus.”

Thank you to MedlinePlus at https://medlineplus.gov/ency/article/000481.htm for the definition. Oh, “systemic lupus erythematosus” refers back to autoimmune disease. Still, the word “erythematosus” puzzled me. I finally figured it out after realizing I probably wasn’t going to get a definition since almost all the entries were for lupus erythematosus. Remember, I studied Greek & Latin roots way, way back in college. It means red and is from the Greek. I get it. Sometimes, lupus patients have a red rash in butterfly form across their face.

So, how do you develop this particular kidney disease? What better place to find out than Lupus.org at https://www.lupus.org/resources/how-lupus-affects-the-renal-kidney-system#.

“Inflammation of the nephrons, the structures within the kidneys that filter the blood, is called glomerulonephritis, or nephritis. Lupus nephritis is the term used when lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body.”

Hmmm, no lupus equals no lupus nephritis. However, if you do have lupus, you may develop lupus nephritis.

Let’s say hypothetically that you or a loved one (or even your neighbor down the block) has lupus and is concerned about developing lupus nephritis. How would they know if they were developing it? I had to look no further than the National Kidney Foundation at https://www.kidney.org/atoz/content/lupus.

“Lupus nephritis can cause many signs and symptoms and may be different for everyone. Signs of lupus nephritis include:

  • Blood in the urine (hematuria): Glomerular disease can cause your glomeruli to leak blood into your urine. Your urine may look pink or light brown from blood.
  • Protein in the urine (proteinuria): Glomerular disease can cause your glomeruli to leak protein into your urine. Your urine may be foamy because of the protein.
  • Edema: Having extra fluid that your kidneys cannot remove that causes swelling in body parts like your legs, ankles, or around your eyes.
  • Weight gain: due to the fluid your body is not able to get rid of.
  • High blood pressure

I know these may also be the symptoms of Chronic Kidney Disease, but if you have lupus, then they may be symptoms of lupus nephritis. To make things even more complicated, there are five different kinds of lupus nephritis depending upon which part of the kidney is affected.

I was wondering about tests to diagnose lupus nephritis, like we have blood and urine tests to diagnose CKD. Healthline (Now do you see why I was so thrilled to receive their Best Kidney Blogs Award two years in a row?) at https://www.healthline.com/health/lupus-nephritis#diagnosis cleared that up.

Blood tests

Your doctor will look for elevated levels of waste products, such as creatinine and urea. Normally, the kidneys filter out these products.

24-hour urine collection

This test measures the kidney’s ability selectively to filter wastes. It determines how much protein appears in urine over 24 hours.

Urine tests

Urine tests measure kidney function. They identify levels of:

  • protein
  • red blood cells
  • white blood cells

Iothalamate clearance testing

This test uses a contrast dye to see if your kidneys are filtering properly.

Radioactive iothalamate is injected into your blood. Your doctor will then test how quickly it’s excreted in your urine. They may also directly test how quickly it leaves your blood. This is considered to be the most accurate test of kidney filtration speed.

Kidney biopsy

Biopsies are the most accurate and also most invasive way to diagnose kidney disease. Your doctor will insert a long needle through your abdomen and into your kidney. They’ll take a sample of kidney tissue to be analyzed for signs of damage.

Ultrasound

Ultrasounds use sound waves to create a detailed image of your kidney. Your doctor will look for anything abnormal in the size and shape of your kidney.

Yes, I know these are the same tests that are used to diagnose CKD, but if you have lupus, they also can diagnose lupus nephritis.

Okay, now the biggie: How do you treat it if you do have it? The MayoClinic at  https://www.mayoclinic.org/diseases-conditions/lupus-nephritis/diagnosis-treatment/drc-20446438 had some sobering news for us:

“There’s no cure for lupus nephritis. Treatment aims to:

  • Reduce symptoms or make symptoms disappear (remission)
  • Keep the disease from getting worse
  • Maintain remission
  • Avoid the need for dialysis or a kidney transplant

Conservative treatments

In general, doctors may recommend these treatments for people with kidney disease:

  • Diet changes. Limiting the amount of protein and salt in your diet can improve kidney function.
  • Blood pressure medications. Drugs called angiotensin-converting enzyme (ACE) inhibitors and angiotensin II receptor blockers (ARBs) can help control blood pressure. These drugs also prevent protein from leaking from the kidneys into the urine. Drugs called diuretics can help you get rid of excess fluid.

However, conservative treatment alone isn’t effective for lupus nephritis.

Immune suppressants

For severe lupus nephritis, you might take drugs that slow or stop the immune system from attacking healthy cells, such as:

  • Steroids, such as prednisone
  • Cyclosporine
  • Tacrolimus
  • Cyclophosphamide
  • Azathioprine (Imuran)
  • Mycophenolate (CellCept)
  • Rituximab (Rituxan)

When immunosuppressive therapies don’t lead to remission, clinical trials may be available for new therapies.

Treatment options for kidney failure

For people who progress to kidney failure, treatment options include:

  • Dialysis. Dialysis helps remove fluid and waste from the body, maintain the right balance of minerals in the blood, and manage blood pressure by filtering your blood through a machine.
  • Kidney transplant. You may need a new kidney from a donor if your kidneys can no longer function.”

Help! Running out of room (but we’re done anyway),

Until next week,

Keep living your life!

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!

 

 

Last Week, The Country… This Week, The World

Last week, I wrote about a U.S. clinical trial program, AllofUs Research Program. This week we’re going global. Huh? What’s that, you ask. It’s KidneyX.

I can just feel you rolling your eyes. (Ask my children if you don’t think I can do that.)  Hold on a minute and I’ll let KidneyX explain what they are from their website at http://www.kidneyx.org.

“The Kidney Innovation Accelerator (KidneyX) is a public-private partnership to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including:

Prevention

Diagnostics

Treatment”

I know, I know. Now you want to know why you should be getting excited about this program you don’t know much about. Let’s put it this way. There hasn’t been all that much change in the treatment of kidney disease since it was recognized. When was that? This question was answered in SlowItDownCKD 2015:

“…nephrologist Veeraish Chauhan from his ‘A Brief History of the Field of Nephrology’ in which he emphasizes how young the field of modern nephrology is.

‘Dr. Smith was an American physician and physiologist who was almost singlehandedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“ .He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.”

1951?????? It looks like I’m older than the history of kidney disease treatment is. Of course, there were earlier attempts by other people (Let’s not forget Dr. Bright who discovered kidney disease in the early 1800s.) But treatment?

Hmmm, how did Dr. Smith treat kidney disease I wondered as I started writing about KidneyX.

Clinics in Mother and Child Health was helpful here. I turned to their “A Short History of Nephrology Up to the 20th Century” at https://www.omicsonline.org/open-access/a-short-historic-view-of-nephrology-upto-the-20th-century-2090-7214-1000195.php? and found this information:

“His NYU time has been called the Smithian Era of renal physiology for his monumental research clarifying glomerular filtration, tubular absorption, and secretion of solutes in renal physiology …. His work established the concept that the kidney worked according to principles of physiology both as a filter and also as a secretory organ. Twenty-first century clinical nephrology stems from his work and teaching on the awareness of normal and abnormal functioning of the kidney.”

I see, so first the physiology and function of the kidney had to be understood before the disease could be treated.

 

I thought I remembered sodium intake as part of the plan to treat CKD way before the Smithian Era. I was wrong. This is also from SlowItDownCKD 2015:

“With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.”

Aha! So one of our dietary restrictions wasn’t accepted until the 1970s. I was already teaching high school English by then. Things did seem to be moving slowly when it came to Chronic Kidney Disease treatment.

Let’s see if I can find something more recent. This, from the National Kidney Fund at https://www.kidney.org/professionals/guidelines/guidelines_commentaries sounds promising, but notice that this has only been around since 1997. That’s only 21 years ago. It has been updated several times, but there doesn’t seem to be that much difference… or maybe I just didn’t understand the differences.

“The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI)™ has provided evidence-based clinical practice guidelines for all stages of chronic kidney disease (CKD) and related complications since 1997…. KDOQI also convenes a small work group of U.S. based experts to review relevant international guidelines and write commentary to help the U.S. audience better understand applicability in their local clinical environment.

Clinical Practice Guidelines are documents that present evidence-based recommendations to aid clinicians in the treatment of particular diseases or groups of patients. They are not intended to be mandates but tools to help physicians, patients, and caregivers make treatment decisions that are right for the individual. With all guidelines, clinicians should be aware that circumstances may appear that require straying from the published recommendations.”

Time to get back to KidneyX before I run out of room in today’s blog. Here’s more that will explain their purpose:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

This may explain why think tanks for kidney patients, all types of kidney patients, are beginning to become more prevalent.

Let’s go back to the website for more information. This is how they plan to succeed:

“Building off the success of similar public-private accelerators, KidneyX will engage a community of researchers, innovators, and investors to bring breakthrough therapies to patients by:

Development

Driving patient access to disruptive technologies via competitive, non-dilutive funding to innovators.

Coordination

Providing a clearer and less expensive path to bringing products to patients and their families.

Urgency

Creating a sense of urgency by spotlighting the immediate needs of patients and their families.”

One word jumped out at me: urgency. I am being treated for my CKD the same way CKD patients have been treated for decades…and decades. It’s time for a change.

One thing that doesn’t change is that we celebrate Memorial Day in the U.S. every year. And every year, I honor those who have died to protect my freedom and thank my lucky stars that Bear is not one of them. There is no way to describe the gratitude those of us who haven’t served in the military – like me – owe to those who have and lost their lives in doing so.

Until next week,

Keep living your life!

Movin’ On Up

Considering my family’s history, I’m vigilant about having colonoscopies. This year, however, there was an additional test – an endoscopy. You may have heard of this as an upper endoscopy, EGD or esophagogastroduodenoscopy. The names are interchangeable. Whatever you call it, I was intrigued.

What is an endoscopy, you ask. According to the Mayo Clinic at https://www.mayoclinic.org/tests-procedures/endoscopy/basics/why-its-done/PRC-20020363:

An upper endoscopy is used to diagnose and, sometimes, treat conditions that affect the upper part of your digestive system, including the esophagus, stomach and beginning of the small intestine (duodenum).

Okay, but that doesn’t explain what the procedure is. The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/diagnostic-tests/upper-gi-endoscopy can help us out here:

Upper GI endoscopy is a procedure in which a doctor uses an endoscope—a flexible tube with a camera—to see the lining of your upper GI tract. A gastroenterologist, surgeon, or other trained health care professional performs the procedure, most often while you receive light sedation to help you relax.

Relax? I was out like a light. First I was being shown was the device that was going to hold my mouth open and hold the tube that would be going down my throat, the next second I awoke in my room… or so it seemed.

Now the biggie: why have an endoscopy in the first place? I went to Patient Platform Limited at https://patient.info/health/gastroscopy-endoscopy and found this,

A gastroscopy may be advised if you have symptoms such as:

• Repeated (recurring) indigestion.
• Recurring heartburn.
• Pains in the upper tummy (abdomen).
• Repeatedly being sick (vomiting).
• Difficulty swallowing.
• Other symptoms thought to be coming from the upper gut.

The sort of conditions which can be confirmed (or ruled out) include:

• Inflammation of the gullet (oesophagus), called oesophagitis. The operator will see areas of redness on the lining of the oesophagus.
• Stomach and duodenal ulcers. An ulcer looks like a small, red crater on the inside lining of the stomach or on the first part of the gut (small intestine) known as the duodenum.
• Inflammation of the duodenum (duodenitis) and inflammation of the stomach (gastritis).
• Stomach and oesophageal cancer.
• Various other rare conditions.

Wait a minute. I can already hear you asking what that has to do with Chronic Kidney Disease. Claire J. Grant, from the Lilibeth Caberto Kidney Clinical Research Unit in London, Canada, and her colleagues’ answer was reported in PhysciansEndoscopy at http://www.endocenters.com/chronic-kidney-disease-adversely-affects-digestive-function/#.WiLwjrpFxaQ,

“CKD adversely affects digestive function,” the authors write. “Abnormalities in digestive secretion and absorption may potentially have a broad impact in the prevention and treatment of both CKD and its complications.”

Not good. We know that CKD requires close monitoring and life style changes. This may be another facet of the disease to which we need to pay attention.

I had some biopsies while I was under sedation. Nope, didn’t feel a thing.

But I now know I have gastritis and an irregular Z-line. The silver lining here is that I don’t have Helicobacter pylori or H. pylori, a type of bacteria that infects the stomach which can be caused by chronic gastritis. Mine seems to be the food caused kind. Generally it’s alcohol or caffeine, spicy foods, chocolate, or high fat foods that can cause this problem. I don’t drink, eat spicy or high fat foods, and rarely eat chocolate, but nooooooooooooooooo, please don’t take away those two luscious cups of coffee a day.

I wasn’t sure what this Z-line thing was so started poking around on the internet, since I didn’t catch it before seeing the gastroenterologist for my after visit appointment. Dr. Sidney Vinson, University of Arkansas for Medical Sciences/UAMS College of Medicine explained:

This refers to the appearance of the tissue where the esophagus and stomach meet. The z-line is a zig-zag line where these 2 different type tissues meet. Occasionally it can be irregular and protrude more into the esophagus and not have the typical appearance. This is generally a benign condition but can occasionally represent mild barrett’s esophagus, a precancerous change caused by reflux.

My source was HealthTap at https://www.healthtap.com/user_questions/198269-in-regards-to-upper-gi-endoscopy-what-is-an-irregular-z-line

Apparently my normal duodenum was biopsied to see if my doctor could find a reason for the pain I was experiencing in the upper stomach. Well, it was more discomfort than pain, but he wanted to be certain there wasn’t an ulcer… and there were no ulcers. Yay!

Hmmm, I have gastritis which is an inflammation and CKD, which is an inflammatory disease. Which came first? Did it matter? If I treat one will the other improve? I’ve been following the renal diet for all nine years since my diagnose and have made the appropriate life style changes, too.

What more could I do? There’s the ever present to struggle to lose weight. That could help. I wasn’t willing to take more medication as my gastroenterologist understood and accepted. I was already taking probiotics. I examined the little booklet produced by Patient Point that I was given more closely ignoring all the advertisements for medication.

Look at that. It seems sleeping on your left side can help. “Since your stomach curves to your left, part of it will be lower than your esophagus.” I can do that, although I wonder if it will be awkward while wearing the BiPap.

I also learned that skipping late night snacks and eating smaller meals would be helpful since there would be less acid produced by smaller meals and I wouldn’t have to deal with acid while I slept if I stopped eating at least two hours before bedtime. Acid is produced to help digest your food.

For Thanksgiving, I was part of a video produced by Antidote Me (the clinical trial matching program I wrote about several weeks ago). The topic was What I Am Thankful to Medical Research for. I think I can safely add endoscopy to that list. https://drive.google.com/file/d/1Mwv-vBRgzRFe8-Mg6Rs7uUIXMOgOMJHX/view

I was also invited to participate in two separate book signings and have a video from one of them. I’ll post it as soon as I can figure out how since I don’t own the rights yet. Oh, I feel a new year’s resolution coming on – learn more about the technology I need for my writing.

Until next week,
Keep living your life!

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!

CKD and the VA or It’s Not Alphabet Soup at All

Today is Memorial Day in the United States. It is not a day to say Happy Memorial Day since it is a day commemorating those who gave their lives for our freedom. Lots of us have bar-b-ques or go to the park or the beach to celebrate. No problem there as long as we remember WHO we are celebrating. I promise: no political rant here, just plain appreciation of those who serve(d) us both living and dead. Personally, I am honoring my husband, my step son-in-law, and all those cousins who just never came home again.

I explained the origins of this day in SlowItDownCKD 2015 (May 25), so won’t re-explain it here. You can go to the blog and just scroll down to that month and year in the drop down menu on the right side of the page under Archives. I was surprised to read about the origins myself.

We already know that Chronic Kidney Disease will prevent you from serving your country in the military, although there are so many other ways to serve our country. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

‘The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services establishes medical standards, which, if not met, are grounds for rejection for military service. Other standards may be prescribed for a mobilization for a national emergency.

As of September 13, 2011, according to Change 1 of this Instruction, the following was included.

‘Current or history of acute (580) nephritis or chronic (582) Chronic Kidney Disease of any type.’

Until this date, Chronic Kidney Disease was not mentioned.”

You can read the entire list of The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services at http://dtic.mil/whs/directives/corres/pdf/613003p.pdf. You’ll also find information there about metabolic syndrome, high blood pressure, high cholesterol, diabetes, and pre-diabetes as conditions for non-enlistment.

This got me to thinking. What if you were had already enlisted when you developed CKD. Yes, you would be discharged as medically unfit, but could you get help as a veteran?

According to the Veterans Administration at https://www.research.va.gov/topics/Kidney_disease.cfm#research4,

“In 2012, VA and the University of Michigan began the work of creating a national kidney disease registry to monitor kidney disease among Veterans. The registry will provide accurate and timely information about the burden and trends related to kidney disease among Veterans and identify Veterans at risk for kidney disease.

VA hopes the kidney disease registry will lead to improvements in access to care, such as kidney transplants. The department also expects the registry will allow VA clinicians to better monitor and prevent kidney disease, and will reduce costs related to kidney disease.”

That’s what was hoped for five years ago. Let’s see if it really came to fruition.

Oh, this is promising and taken directly from The U.S. Department of Veterans Affairs.

“VA eKidney Clinic

The VA eKidney Clinic is now available! The eKidney Clinic offers patient education through interactive virtual classrooms where Veterans can learn how to take care of their kidneys and live a good life with kidney disease. Please visit the VA eKidney Clinic website or click on the picture below. For additional information see the eKidney Clinic Patient Information Brochure.”

The Veterans Health Administration doesn’t just provide information, although I must say I was delighted to see the offer of Social Work Services. There is also treatment available. Notice dialysis mentioned in their mission statement.

Mission: The VHA Kidney Program’s mission is to improve the quality and consistency of healthcare services delivered to Veterans with kidney disease nationwide. The VHA Kidney Program provides kidney-related services to dialysis centers throughout VA’s medical centers. Professional guidance and services are available in the form of consultation and policies developed by VA kidney experts. These experts are dedicated to furthering the understanding of kidney disease, its impact on Veterans, and developing treatments to help patients manage disease symptoms. In addition, the VHA Kidney Program provides VA healthcare professionals with clinical care, education, research, and informatics resources to improve healthcare at local VA dialysis facilities.”

I did find it strange that there was a cravat on the Veterans Administration site that they do not necessarily endorse the VHA Kidney Program, especially since it is so helpful.

 

 

 

How involved is the VA with CKD patients? Take a look for yourself at this 2015 statistics by going to https://www.va.gov/HEALTH/services/renal/documents/Kidney_Disease_and_Dialysis_Services_Fact%20Sheet_April_2015.pdf

  • All Veterans enrolled in VA are eligible for services, regardless of service connection status
  • Enrolled Veterans can receive services from the VA or from community providers under the Non-VA Care Program if VA services are unavailable
  • 49 VA health care facilities offer kidney disease specialty care (nephrology services)
  • 96 VA facilities offer inpatient and/or outpatient dialysis; 25 centers are inpatient-only. Of the 71 VA outpatient dialysis centers, 64 are hospital based units, 2 are joint VA/DoD units, 4 are freestanding units, and one is within a community based outpatient clinic (CBOC)
  • VA enrollees must be offered the option of home dialysis provided either directly by the VA or through the Non-VA Care Program
  • 36 outpatient hemodialysis centers offer home dialysis care directly.
  • 5 VA medical centers host kidney transplantation programs.
  • VA Delivered Kidney Care (Calendar Year 2013) 13,794 Unique Veterans receiving dialysis paid for by VA; representing an annual increase of 13% since 2008. 794 Veterans received home dialysis; 55percent (434) by VA facilities and 45percent (360) under the Non-VA Care Program.
  • Increasing use of telehealth services to increase Veteran access to kidney specialty care Secure messaging: 7,319 messages, Clinical video telehealth: 4,977 encounters
  • VA Kidney Research (FY ’14) the research budget for the study of kidney disease has been $18.5 million per year for the past 5 years (FY ’10-FY ’14). The VA Cooperative Studies Program has supported national clinical trials addressing the best treatment of Veterans with CKD since at least 1998.

It seems to me our veterans are covered. Now if we could only make sure the rest of us stay covered no matter what bills the current administration signs into law.

Until next week,

Keep living your life!

Inked

tattooThere’s a woman I know, younger than I by three and a half decades, who is inked… and I mean inked. She has sleeves on both arms and (almost) a body suit.  Don’t know what I’m talking about? Take a look at http://www.inkedmag.com/tattoo-lingo/. Unfortunately she’s lost a job or two when narrow minded employers saw her arms, but that’s not what I’m writing about today.

Oh, all right. Here are the definitions of the jargon above: inked = tattooed; sleeve= fully tattooed on the arm; body suit= tattoos on the majority of the body.

I was thinking about her the other day and that got me to thinking about tattoos and whether or not they’re safe for us since we have Chronic Kidney Disease. Let’s take a look at the tattooing process itself to see if there’s anything there to worry about.

I turned to The Mayo Clinic at http://www.mayoclinic.org/healthy-lifestyle/adult-health/in-depth/tattoos-and-piercings/art-20045067 for this information.

“A tattoo is a permanent mark or design made on your skin with pigments inserted through pricks into the skin’s top layer. Typically, the tattoo tattoo machineartist uses a hand-held machine that acts much like a sewing machine, with one or more needles piercing the skin repeatedly. With every puncture, the needles insert tiny ink droplets.

The process — which is done without anesthetics — causes a small amount of bleeding and slight to potentially significant pain.”

Personally, I’m too much of a scaredy cat to give tattooing a try now that I know about the possibility of pain. There’s enough of that in my life already… like the endometrial biopsy a few months ago. Ugh! But maybe you’re not…

Well, why might you want a tattoo in the first place? Maybe it’s an artistic requirement for your soul.  Maybe it’s to remind yourself of some life lesson like my New York daughter, Nima’s. Or maybe it’s a medical tattoo to wear rather than a medical alert bracelet.

What is itHmmm, I’d think again. As CKD patients, our blood is already not that pure. Remember, as I explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“The kidneys remove these toxins (e.g. from the blood) and change them into urine ….”

Our kidneys are not functioning at the top of their game. With my current GFR of 51, my kidneys are only functioning at a teeny bit more than half capacity while still trying to filter the blood as kidneys with a GFR of 100% would. Oh, right, GFR. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 that’s explained according to the NKDED:

“The National Kidney Disease Education Program at The U.S. Department of Health and Human Services provides the following information.DIGITAL_BOOK_THUMBNAIL

  1. A blood test checks your GFR, which tells how well your kidneys are filtering. GFR stands for glomerular filtration rate. …”

Here’s what I found on Health Impact News at http://healthimpactnews.com/2015/think-before-you-ink-the-little-known-risks-of-tattoos/ that makes me so leery of tattoos.

“In 2011, a study in The British Journal of Dermatology revealed that nanoparticles are indeed found in tattoo inks, with black pigments containing the smallest particles (white pigments had the largest particles and colored pigments were in between).

Nanoparticles are ultramicroscopic in size, making them able to readily penetrate your skin and travel to underlying blood vessels and your bloodstream. Evidence suggests that some nanoparticles may induce toxic effects in your brain and cause nerve damage, and some may also be carcinogenic.”Healthy%20Kidney

Whenever I speak to someone who has a tattoo, they tell me the ink only goes as far as the dermis (the second layer of skin) and nowhere near the blood.  I often wondered about that since the dermis is rife with blood vessels. I guess I just learned that the tattoo owners were misinformed. And why we as CKD patients should not be allowing even the possibility of more toxins entering our blood streams for our already overworked kidneys to eliminate.

Are tattos pretty? I think so.  Are they spiritual? Sometimes they are. Are they worth the risk? It’s your decision, but I can’t agree that they are. I found even more evidence to the contrary on WebMd at http://www.webmd.com/skin-problems-and-treatments/laser-tattoo-removal?page=2

“There are minimal side effects to laser tattoo removal. However, you should consider these factors in your decision:

tattoo removalThe tattoo removal site is at risk for infection. You may also risk lack of complete pigment removal, and there is a slight chance that the treatment can leave you with a permanent scar….”

I’d also read on various sites that simply being tattooed may leave you open for infection if the autoclave (instrument steaming machine) or needles are not clean enough. I don’t know of any sites to rate the cleanliness of tattoo parlors, but I do know infection opportunities are far more common for us as CKD patients…and they are more dangerous for us.

This paragraph from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 should clarify the why of avoiding infection possibilities.

Digital Cover Part 2 redone - Copy“Think about it: your liver and your kidneys are the two most important blood filters you have. We already know we need to maintain as steady a blood pressure in the kidneys as we can to do no more damage to them.  The liver does this by releasing angiotensin which constricts your blood vessels. Don’t forget the liver helps maintain your blood sugars.  If it can’t do that due to infection, kidney function can be further reduced. The liver also filters toxins and drugs from the blood.”

I wondered if I’d find enough information for a blog about CKD patients and tattoos. On the contrary, I find I could go on and on.

Tuesday is the beginning of National Kidney Month. While I won’t be leading my team in the kidney walk this year (Damn neuropathy!), I’ve got another surprise up my sleeve to celebrate. I may be able to announce that next week.2015-04-18 22.09.45

Don’t forget about the National Kidney Fund of Arizona’s annual conference on March 11th and 12th. I’ll be there on the 11th. You can register at www.SWNC.org.

Until next week,

Keep living your life!

From Veterans’ Day Salt To Dense Breasts

Veterans’ Day is observed today, although it was technically yesterday.  People here in Arizona take their veterans seriously.  For example, Texas Roadhouse offers the proverbial free lunch (even though we all know these patriotic men and women have already paid the price) for veterans.    

Bear is a retired Army Lieutenant Colonel – addressed as Colonel by military personnel – so we partook. There were so many discussions around us about where the veterans had been stationed or seen action.  What most impressed me is that an employee, a veteran himself, went from table to table to personally thank the other veterans.

As a chronic kidney disease patient, I usually avoid this particular restaurant chain due to their heavy use of salt. I already knew they salted the French fries as they left the kitchen, so I simply ordered a Cesar salad sans dressing and croutons as my side and ate very little of the full fat, full sodium Parmesan cheese topping my iceberg lettuce.

The cheeseburger was a bit of a surprise.  I rarely eat meat preferring ground turkey, which I buy 99% fat free. As for the cheese, they were perfectly willing to switch cheddar for the usual American. This was also full fat, full sodium but I wasn’t concerned because I only planned to eat half of this 8 ounce burger, which meant only half the cheese, too.

What I hadn’t figured on was the steak seasoning.  I never use salt so when I took my first bite, it tasted as if I’d taken a bite out of some  cow’s errant salt lick. The waitress must have seen the look on my face.                   

I didn’t want to cause a fuss because the place was jam packed.  Unbeknownst to me, the waitress told the manager who came over and insisted he make me a new burger without any seasoning.  How kind of him… and I hadn’t even mentioned that I have ckd.

So let’s hear it for Texas Roadhouse for both their respect for veterans and the ease with which they accommodate food restrictions.

Keeping it salty today (Get it? Sodium? Salty?) MedicineNet.com has an article about six top sources of sodium at: http://www.medicinenet.com/script/main/art.asp?articlekey=164822#.UJyT0_ncLdE.email.

1. Bread and rolls – One piece of bread can have as much as 230 mg of sodium. That’s 15% of the recommended daily amount. Although each serving may not sound like much, it can quickly add up throughout the day, with toast at breakfast, a sandwich at lunch, and a roll at dinner, etc.

2. Cold cuts and cured meats – Deli or pre-packaged turkey can have as much as 1,050 mg of sodium. It’s added to most cooked and processed meats to reduce spoilage.

3. Pizza – One slice can have up to 760 mg of sodium. That means two slices accounts for a day’s worth of salt.

4. Poultry – Packaged raw chicken often contains an added salt solution. Depending on how it’s prepared the sodium level can quickly add up. Just 3 ounces of frozen and breaded chicken nuggets contains about 600 mg of sodium.

5. Soup – This cold-weather staple can contain a day’s worth of sodium in a single bowl. One cup of canned chicken soup can have up to 940 mg of sodium.

6. Sandwiches – Breads and cured meats are already high in salt, and putting them together with salty condiments like ketchup and mustard can add up to more than 1,500 mg of sodium in a single sandwich.

There was another surprise for me here.  Chicken?  I went through the material my nutritionist gave me and found that this did need to be limited since it was protein, but nothing about sodium.  Notice #1 talks about 230 mg. of sodium being 15% of the recommended daily amounts.  It’s a higher percentage for us.  We are limited to 2,000 mg. of sodium daily – another ‘perk’ of having ckd – not the 2,400 mg. usually recommended. If you’re following the teaspoon of salt guideline, it is 2,300 mg.

Take heart (pun intended), we are in good company.  The American Heart Association made this recommendation on November 5th of this year:

” ‘Americans of all ages, regardless of individual risk factors, can improve their heart health and reduce their risk of cardiovascular disease by restricting their daily consumption of sodium to less than 1,500 mg’AHA chief executive officer Nancy Brown said in a statement. ”

You can read more at: http://healthland.time.com/2012/11/05/why-even-healthy-people-should-watch-their-salt-intake/#ixzz2C2ab5zjp

A note about mammographies and dense breast tissue before we end.  This caught my eye because, even though I recently had biopsies due to lumps felt upon manual palpitation, I also have dense breasts and was told so several years ago. Arizona has not passed this law yet.  I was just lucky enough to have a caring mammographist.

 “In a move that has irked medical groups and delighted patient advocates, states have begun passing laws requiring clinics that perform  mammograms to tell patients whether they have something that many women have never even heard of: dense breast tissue. Women who have dense tissue must, under those laws, also be told that it can hide tumors on a mammogram, that it may increase the risk of breast cancer and that they should ask their doctors if they need additional screening tests, like ultrasound or M.R.I. scans.”

Left, a scan of a dense breast, which has more glandular or connective tissue than a non-dense breast, right. The denser tissue, with more milk ducts and lobes, can block X-rays.

Thomas Kolb, M.D.

I urge you to read this important Oct. 24th article by Denise Grady which can be found at: http://www.nytimes.com/2012/10/25/health/laws-tell-mammogram-clinics-to-address-breast-density.html?pagewanted=1&_r=0&adxnnl=1&seid=auto&smid=tw-nytimeshealth&adxnnlx=1352751446-kOG7vFMn6dRGqN4ipe4FCQ

If you hurry up, you may still be able to partake of Libre Clothing’s contest and give away on Pininterest.  They have been really good friends to us.

Question: would you like to see What It Is And How Did I Get It? Early Stage Chronic Kidney Disease at the Southwest Nephrology Conference in March?

Until next week,

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: http://www.fsis.usda.gov/Fact_Sheets/Keeping_Food_Safe_During_an_Emergency/index.asp

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: http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

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:

http://consumerhealthchoices.org/wp-content/uploads/2012/10/ChoosingWiselyKidneyDiseaseASN.pdf

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: http://www.uwhealth.org/healthfacts/B_EXTRANET_HEALTH_INFORMATION-FlexMember-Show_Public_HFFY_1126651607431.html

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:

http://www.medpagetoday.com/PracticeManagement/PracticeManagement/35298?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2012-10-15&eun=g596983d0r&userid=596983

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: http://www.eurekalert.org/pub_releases/2012-10/uom-mbs101512.php

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!

My Turn For A Biopsy

I’m back!  But not quite on the Chronic Kidney Disease mark yet.

You see, I went to my dermatologist – my skin specialist.  That’s something I do out of duty to myself every five years or so.  There are multiple instances of melanoma in my family history so I took it upon myself to undergo a full body scan at least that often. According to the Merriam-Webster Dictionary of Medical Terms, a melanoma is “a benign or malignant skin tumor containing dark pigment.”

The doctor usually finds some little skin tags that can be snipped off so they don’t get in my way or some suspicious mole to be scrapped off so it doesn’t turn into cancer later on. This time was a little different.

Dr. Crystal Layton of Affiliated Dermatology here in Phoenix is a soothing, easy to talk to doctor.  And we did talk.  She found a couple of lesions that looked suspicious to her and asked my permission to freeze them off. I never agreed to anything so quickly before (except maybe co-habiting with Bear). The images of different melanomas are provided by sunsafekids.tripod.com.

The procedure is called cryosurgery which Dr. Layton’s medical group defines as “the treatment of lesions with the application of a cold substance.  In most case, liquid nitrogen is used to destroy the lesion.” Cold vastly understates the actual feeling.

Lesion sounded like a dirty word to me so I looked it up. The second definition of the word on The Free Online Dictionary is “A localized pathological change in a bodily organ or tissue.” *sigh* That helped. While blisters did form as my dermatologist warned me they might, the one on my face is (thankfully) dried up and gone while the one on my leg is in a slightly uncomfortable holding pattern after eight days.

I’ve always believed in not sweating the small stuff and this is small stuff in comparison to what happened next. You guessed it.  One week after losing a family member to breast cancer, I had not one, but two, biopsies.

Being an eternal optimist, I was not even thinking about the possibilities this could bring to mind until I got the results.  I’m great at acting immediately when necessary but also great about waiting until there is a necessity instead of going off half cocked (so glad Bear gave me a gun education when we met so I could comfortably use that term).

This may be a little hard to believe but just as I was about to hit the publish button on the blog site, my internet went down.  I immediately got a call from the dermatologist’s office telling me the biopsy came back benign (harmless)… and the internet came back up. Wow!

Referring to another of Affiliated Dermatology’s handouts, I confirmed my thinking that, “A biopsy is the removal of a small sample of a growth on the skin by your dermatologist. The sample is then sent to a pathologist, a doctor who examines this sample under a microscope and renders a diagnosis regarding the type of growth of disease present.”

The area was numbed so I could have watched the process if I’d cared to (hah!).  I am a firm adherent to recent research findings that NOT watching a medical procedure lessens the patient’s pain (none here) and anxiety (well…).  I attempted to take photos of the bandages myself, but the results were laughable.  See, I can find humor in anything.

As usual, I had to know exactly what the procedure was, and without watching it. Medilexicon was really helpful here.  They define the punch biopsy as “any method that removes a small cylindric specimen for biopsy by means of a special instrument that pierces the organ directly, or through the skin, or a small incision in the skin.” You can find this at:        http://www.medilexicon.com/medicaldictionary.php?t=10355

Dr. Layton performed a punch biopsy, and I’ve got the three stitches to prove it! The stitches don’t bother me a bit since the pressure bandages protect them. Depending upon which source you check, pressure bandages are used to stop bleeding (if I bled, I didn’t know about it) or to prevent fluid from accumulating in the wound. Unfortunately, the keloids (extra scar tissue formed over a wound) from biopsies in the same area twenty years ago may now have keloids of their own.

I actually saw the ‘plugs’ that were removed from my breast. It’s not something a doctor usually offers to show you, but since all my questions were answered as I asked them, I figured I’d ask to see the plugs. And they were shown to me. Oh, thank you to ehealthimages.com for the diagram.

I simply can’t think of a smooth transition into book news. I am so delighted with the biopsy results. So I will just switch.  Sales are growing which was a surprise to me since I hadn’t bothered checking. I’ve also gone back to donating to doctors’ offices and anywhere else people might find the book helpful.  Have you read my FB and Twitter offer to send you a free book when you donate to any kidney affiliated organization?

I still maintain it’s more important to get the information to people when they need it, where they need it, than make a million dollars. I wouldn’t mind recouping my expenses, but the book was never meant to be a money maker for me.

It is exhausting writing about your own health issues!

Until next week,

Keep living your life!