It’s Like the Sahara in There

I like my dentist, especially when he tells me something I didn’t know. When I went to see him last time, I told him my chemo experience and how dry my mouth was. I thought they might be related. He patiently gave me the same information as the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/dry-mouth/symptoms-causes/syc-20356048.

“Dry mouth, or xerostomia (zeer-o-STOE-me-uh), refers to a condition in which the salivary glands in your mouth don’t make enough saliva to keep your mouth wet. Dry mouth is often due to the side effect of certain medications or aging issues or as a result of radiation therapy for cancer. Less often, dry mouth may be caused by a condition that directly affects the salivary glands.

Saliva helps prevent tooth decay by neutralizing acids produced by bacteria, limiting bacterial growth and washing away food particles. Saliva also enhances your ability to taste and makes it easier to chew and swallow. In addition, enzymes in saliva aid in digestion.

Decreased saliva and dry mouth can range from being merely a nuisance to something that has a major impact on your general health and the health of your teeth and gums, as well as your appetite and enjoyment of food.

Treatment for dry mouth depends on the cause.”

The joke’s on me. I developed dry mouth before the radiation treatments began. At least my salivary glands weren’t having any issues of their own. It seems we discussed xerostomia at the right time.

Wait a minute. Something is pulling on my memory. Something about Chronic Kidney Disease and dry mouth. Of course, periodontics and CKD. The Journal Of Clinical Periodontology at https://onlinelibrary.wiley.com/action/doSearch?AllField=chronic+kidney+disease&SeriesKey=1600051x had just what I was trying to remember. By the way, this is a fascinating free online library by John Wiley, a publisher I remember well from when I worked as an educator.

“Periodontitis had significant direct effect, and indirect effect through diabetes, on the incidence of CKD. Awareness about systemic morbidities from periodontitis should be emphasized.”

In other words, if you have CKD or diabetes, make certain your dentist knows so he or she can monitor you for the beginning of periodontic problems. Just as with any other medical issue, the sooner you start treatment, the better. I can attest to this since I caught my pancreatic cancer early, which gave me a much better chance of eradicating it from my body.

The treatment for dry mouth seems simple enough, as explained by Healthline (Thank you again for the two awards!) at https://www.healthline.com/symptom/dry-mouth.

“Dry mouth is usually a temporary and treatable condition. In most cases, you can prevent and relieve symptoms of dry mouth by doing one or more of the following:

  • sipping water often
  • sucking on ice cubes
  • avoiding alcohol, caffeine, and tobacco
  • limiting your salt and sugar intake
  • using a humidifier in your bedroom when you sleep
  • taking over-the-counter saliva substitutes
  • chewing sugarless gum or sucking on sugarless hard candy
  • over- the-counter toothpastes, rinses, and mints

If your dry mouth is caused by an underlying health condition, you may require additional treatment. Ask your doctor for more information about your specific condition, treatment options, and long-term outlook.”

The sugarless gum works well for me and, as an added benefit, quelled the nausea from the radiation treatments, too. While I don’t drink or smoke, I will have an occasional half cup of coffee when I can tolerate it. I didn’t know this was something to be avoided. As both a CKD patient and a type 2 diabetic (Thanks, pancreatic cancer.), I was already avoiding salt and sugar. So, without realizing it, I was already helping myself deal with dry mouth. Lucky me.

That got me to thinking. What other problems could dry mouth cause? I went to NHS Inform at https://www.nhsinform.scot/illnesses-and-conditions/mouth/dry-mouth to look for an answer. Indeed, this is a Scottish website, but a mouth is a mouth no matter where it’s located, right?

  • “a burning sensation or soreness in your mouth
  • dry lips
  • bad breath (halitosis)
  • a decreased or altered sense of taste
  • recurrent mouth infections, such as oral thrush
  • tooth decay and gum disease
  • difficulty speaking, eating or swallowing”

On a personal note, I found the halitosis embarrassing and the altered sense of taste frustrating. And here, I’d been blaming the chemo for that. Maybe it was the chemo, although my age could also be the cause of my dry mouth. I do admit that 72 could be considered “aging.” My husband orders the groceries and we now have a pantry full of food I used to love but all taste, well, funny now. Poor guy, he was just trying to get me to eat when he ordered the food. He knew calorie intake is important when you’re dealing with cancer.

I wondered what the symptoms of dry mouth were… well, other than a dry mouth, that is.

“Common symptoms include:

  • A sticky, dry feeling in the mouth
  • Frequent thirst
  • Sores in the mouth; sores or split skin at the corners of the mouth; cracked lips
  • A dry feeling in the throat
  • A burning or tingling sensation in the mouth and especially on the tongue
  • A dry, red, raw tongue
  • Problems speaking or trouble tasting, chewing, and swallowing
  • Hoarseness, dry nasal passages, sore throat
  • Bad breath

Thank you to WebMD at https://www.webmd.com/oral-health/guide/dental-health-dry-mouth#1 for the above information.

Will you look at that! Just as diabetes can cause CKD and CKD can cause diabetes, bad breath (halitosis), soreness or burning sensation in the mouth can both be symptoms of dry mouth and problems caused by dry mouth.

Let’s see now. What else can I tell you about dry mouth? DentistryIQ at https://www.dentistryiq.com/clinical/oral-cancer/article/16356305/facts-about-dry-mouth is a new site for me. They describe themselves as “… a leading source of information that helps dental professionals achieve excellence in their positions, whether that position is dentist, dental practice owner, dental hygienist, dental office manager, dental assistant, or dental school student.” I went there to find out just how many people suffer from dry mouth.

“It is estimated to affect millions of people in the United States, particularly women and the elderly…. Current research indicates that approximately one in four adults suffer from dry mouth, and this figure increases to 40 percent in populations over the age of 55….”

This was back in 2006, and unfortunately are the most current figures I could find. Please let us know if you can find more current numbers.

Personal note: Tomorrow I will be having surgery to remove the pancreatic cancerous tumor I’ve been dealing with since last February. The blogs will be posted right on time, but comments, emails, etc. probably won’t be answered for a while. I’ve been told this is an arduous surgery with a long, slow recovery period. Keep well until we can communicate again.

Until next week,

Keep living your life!

Kidney Anxiety

I clearly remember writing about how depression, grief, and stress affect your kidneys, but not about anxiety. As Bear’s pain worsens, there’s a lot of that in my house recently. I don’t understand why it’s taking so long for his doctors to decide upon a treatment plan for him, but while they do I am one anxious person.

I went directly to my old friend, the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/anxiety/symptoms-causes/syc-20350961 for a set of anxiety symptoms:

“Common anxiety signs and symptoms include:

  • Feeling nervous, restless or tense
  • Having a sense of impending danger, panic or doom
  • Having an increased heart rate
  • Breathing rapidly (hyperventilation)
  • Sweating
  • Trembling
  • Feeling weak or tired
  • Trouble concentrating or thinking about anything other than the present worry
  • Having trouble sleeping
  • Experiencing gastrointestinal (GI) problems
  • Having difficulty controlling worry
  • Having the urge to avoid things that trigger anxiety”

While I don’t have all these symptoms, there are at least four or five of them I can identify with.

Wait a minute. Maybe I’m barking up the wrong tree. Is my worry about Bear’s pain really causing anxiety? I popped over to Medical News Today at https://www.medicalnewstoday.com/articles/323456.php for some help in figuring out just what it is that causes anxiety.

  • Environmental factors: Elements in the environment around an individual can increase anxiety. Stress from a personal relationship, job, school, or financial predicament can contribute greatly to anxiety disorders. Even low oxygen levels in high-altitude areas can add to anxiety symptoms.
  • Genetics: People who have family members with an anxiety disorder are more likely to have one themselves.
  • Medical factors: Other medical conditions can lead to an anxiety disorder, such as the side effects of medication, symptoms of a disease, or stress from a serious underlying medical condition that may not directly trigger the changes seen in anxiety disorder but might be causing significant lifestyle adjustments, pain, or restricted movement.
  • Brain chemistry: Stressful or traumatic experiences and genetic factors can alter brain structure and function to react more vigorously to triggers that would not previously have caused anxiety. Psychologists and neurologists define many anxiety and mood disorders as disruptions to hormones and electrical signals in the brain.
  • Use of or withdrawal from an illicit substance: The stress of day-to-day living combined with any of the above might serve as key contributors to an anxiety disorder.

There are items on this list which I hadn’t considered before. Years ago, when I was teaching in an old vocational high school, a student holding one of those long, heavy, solid oak window poles to open very high windows quickly spun around to answer a question and accidentally hit me in the head with the pole. That was certainly traumatic and also one of the few times I’ve been hospitalized.

We’ve pretty much figured out that there is an undiagnosed history of anxiety in the family. I’m referring to people from past generations who faced pogroms, the Depression, and even having to give up babies for adoption since that’s what was done with babies from unwed mothers in that generation. Could these folks have had anxiety disorders rather than environmental anxiety? Of course, we’ll never really know since they are long gone from this earth, but it is a thought.

Lightning Bolt!!! I remember visiting my buddy and her mother in San Miguel de Allende in Mexico not long after my own mother died and being anxious. I attributed it to still being in mourning for my mother. San Miguel de Allende has an elevation of 7,000 feet. Was that one of those “low oxygen levels in high-altitude area?” I didn’t know, but Laura Anderson author of the Gunnison Country Times’ article on Acli-Mate at https://acli-mate.com/living-at-altitude-the-pros-and-cons-of-a-high-altitude-lifestyle/ did:

“Low landers generally aren’t affected by altitude until they reach 4,500 to 5,000 feet. But after that, the affects (sic) of altitude are compounded about every 1,000 feet — so the affects (sic) of going from 6,000 feet to 7000 feet can feel the same as jumping from sea level to 4,500 feet.”

What in heaven’s name is this doing to my kidneys, I wondered. I was surprised to find an answer… in reverse. Rather than anxiety causing a kidney problem, it seems that fear of kidney disease can cause anxiety, or at least that’s what Calm Clinic at https://www.calmclinic.com/anxiety/kidney-problems claims. Be aware that they are a business and will try to sell to you if you go to their site.

  • Extra Urination Anxiety can cause more frequent urination. When you experience anxiety, the part of your brain that controls the withholding urination slows down because anxiety requires resources to be sent to other parts of your brain. This can lead to concerns over your renal health, although nothing is wrong.
  • Lower Back Pain Lower back pain is also very common with anxiety. Lower back pain comes from severe stress and tension, and yet it’s associated with some conditions that affect the kidneys as well which can have many people worried about their kidney health.
  • Life Experiences Anyone that suffers from anxiety and has had a friend or family member diagnosed with a terrible kidney condition is at risk for developing anxiety over the idea of poor kidneys. Anxiety can turn life experiences into very real concerns, and so kidney health concerns are one of the issues that can come up when you see it in others.”
  • Urine Color Urine color is another issue that can cause anxiety. Many people check their urine color for diseases habitually, and every once in a while the color of a person’s urine may be very different than what they expect. This can create concerns that the urine color changes are due to kidney problems.”

What I find interesting is that kidney disease can cause frequent urination, too. Kidney disease may also cause lower back pain. If you know any CKD patients, you know we’re always checking the color of our urine to make certain we’re well enough hydrated.

So it seems your fear of kidney disease may cause a symptom of kidney disease… and/or possibly diabetes. All I have to say to that is make sure you take the simple urine and blood test to determine if you do really have Chronic Kidney Disease or diabetes.

Until next week,

Keep living your life!

Double Whammy

Just as the flu was walking out the door, sinusitis walked in. No fair! Although, I must be feeling better because I’m starting to open all the doors and windows again.

I live in Arizona. We don’t have an actual winter, but we do have a flu season with all its accompanying ailments. Having a compromised immune system is not exactly a first choice, but I have Chronic Kidney Disease.

I know I need to slow down with this explanation. Good thinking. First off, what is the immune system? I went to NCBI, The National Center for Biotechnology Information at https://www.ncbi.nlm.nih.gov/books/NBK279364/ for an answer.

“The immune system (from the Latin word immunis, meaning: “free” or “untouched”) protects the body like a guardian from harmful influences from the environment and is essential for survival. It is made up of different organs, cells and proteins and aside from the nervous system, it is the most complex system that the human body has.

As long as our body’s system of defense is running smoothly, we do not notice the immune system. And yet, different groups of cells work together and form alliances against just about any pathogen (germ). But illness can occur if the performance of the immune system is compromised, if the pathogen is especially aggressive, or sometimes also if the body is confronted with a pathogen it has not come into contact before.”

Notice the word “compromised” in the last sentence. According to Dictionary.com at https://www.dictionary.com/browse/compromised, that means

“unable to function optimally, especially with regard to immune response, owing to underlying disease, harmful environmental exposure, or the side effects of a course of treatment.”

So when you have a compromised immune system, you are not receiving the full protection against germs that you could be receiving. Well, how does CKD affect the immune system?

My GFR (the numbers above the arc in the photo to the left and defined later in this blog) is usually between 49% and 59%. That means at any given time I’m missing quite a bit of the function normal kidneys would have. In other words, my kidneys are working more than twice as hard as those of someone without kidney disease. This is a fact that’s easy to forget now that I have the renal diet down pat … until I get sick… and it takes me longer to recuperate… or I slide right into another illness.

Let’s take a look at the jobs performed by the kidneys to see exactly why. This is what I wrote in SlowItDownCKD 2014:

“Your kidneys filter toxins and waste products from your blood.  They also regulate electrolyte levels and blood pressure and produce hormones, among their many jobs.”

Let’s say I eat some bad food. It would take me more than twice as long to recover and I could be more than twice as sick since my kidneys are compromised. Or maybe I actually took one of Bear’s medications instead of my own (which will never happen since they’re kept far, far from mine. This is just an example.) Same thing. I only have less than half the ability to remove a toxin from my body as someone with normal kidney function does. As for germs? You guessed it. My compromised immune system leaves me open to far more than I would be if I didn’t have CKD.

Now for sinusitius. I had that one covered in SlowItDownCKD 2013:

“The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/acute-sinusitis/symptoms-causes/syc-20351671 has this to say about acute sinusitis:

‘Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.’

Before we get any more detailed here, a few reminders are in order {taken from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary}.

Acute – Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic – Medication used to treat infection.

Chronic – Long term, the opposite of acute.

GFR  – Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well
the kidneys are functioning.”

Keeping it plain and simple, that just about covers my double whammy of sliding from the flu into sinusitis.

For those interested in KidneyX, this may be for you:

KidneyX: #RedesignDialysis Twitter Chat
The KidneyX: Redesign Dialysis prize challenge has a total prize purse of $2,625,000 and aims to accelerate the development and commercialization of next-generation dialysis products. Now through February 28, 2019, the KidneyX Redesign Dialysis competition will be accepting proposals for solutions or components of solutions that offer patients significant alternatives to dialysis as it is generally practiced today.
Innovators that are interested in applying for KidneyX: Redesign Dialysis are encouraged to participate in Twitter chat on January 24, 2019 from 1:00pm – 2:00pm EST.
Representatives from the U.S. Department of Health and Human Services and American Society of Nephrology will be available during the chat to answer your questions and provide more information about KidneyX, the Redesign Dialysis competition, and innovation in kidney care.. To participate and follow the chat, use the #RedesignDialysis hashtag.

For those of you who are caretakers for people with CKD, this may interest you:

Please join us on Wednesday, January 23 at 1 p.m. ET for an educational webinar titled: Taking Care of Yourself While Taking Care of Your Loved Ones – Coping Strategies for Kidney Patient Caregivers!
As a caregiver for a loved one with kidney disease, it is important to remember to take time for yourself. Hear from social worker Renee Bova-Collis, MSW, LCSW, and caregivers Brenda Vasser-Taylor and Ashley Martin … as they share coping strategies to help you take care of yourself so that you can support your loved ones.

 

Click here to Register!

 

After registering, you will receive a confirmation email with information on how to join the webinar. To call-in without connecting to a computer, use this #:

United States: +1 (562) 247-8422

You will be asked to enter the following Access Code: 399-056-972#

Audio PIN: Shown after joining the webinar

Until next week,

Keep living your life!

A Creatinine Christmas Present

Tomorrow is Christmas and a Merry Christmas to those of you who celebrate. The day after Christmas Kwanzaa begins, so a Happy Kwanzaa to those of you who celebrate. But back to Christmas right now: today’s blog is a present to a reader who joined me way back when I first started blogging and has since become a close online friend.

You see, her creatinine is rising but she’s barely eating and – since she has multiple physical conditions – can’t exercise. She’s flummoxed and so was I because food and muscle waste are the two usual causes of rising creatinine levels in the blood. I decided to try to help her sort this out now even though she’ll be seeing her nephrologist right after the New Year.

A good place to start is always at the beginning. By this, I wonder if I mean the beginning of my Chronic Kidney Disease awareness advocacy as the author of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and the blog or if I mean the basics about creatinine. Let’s combine them all. The following definition is from the book which became the earliest blogs:

Creatinine clearance: Compares the creatinine level in your urine with that in your blood to provide information about your kidney function”

Hmmm, that didn’t exactly work. Let’s try again. Bingo! It was in SlowItDownCKD 2014,

“Creatinine: chemical waste product that’s produced by our muscle metabolism and to a smaller extent by eating meat. {MayoClinic.org}”

Red meat? No, that’s not it. My friend doesn’t eat meat at all, as far as I know. Beaumont Hospital Kidney Centre at http://www.beaumont.ie/kidneycentre-forpatients-aguidetokidneydisease-die offers the following information concerning food and creatinine:

“Protein intake from the diet is important during the progression of chronic kidney disease and also when you commence dialysis. The protein we eat is used for tissue repair and growth. Any unused protein is broken down into waste products, including urea and creatinine. As your kidneys are unable to excrete urea and creatinine properly, they build up in your blood and cause symptoms such as nausea and loss of appetite.

By eating large amounts of protein foods e.g. meat, fish, chicken, eggs, cheese, milk and yoghurt before commencing dialysis [Me here, that means those of us who are pre-dialysis like me], you will affect the buildup of urea and creatinine in your blood. An appropriate daily intake of protein should be advised by your dietician.

However, once dialysis treatment has commenced it is important to make sure that your body is getting enough protein to prevent malnutrition. Some of your stores of protein are lost during the haemodialysis and CAPD sessions. How much protein you need depends on your body size and is specific to each individual.”

And the ‘muscle metabolism’ in our definition? This deals with the way muscles use energy. The waste product of this process is creatinine.

Medical News Today at https://www.medicalnewstoday.com/articles/320113.php had something to say about exercise and creatinine:

“Strenuous exercise, such as weight training or resistance exercise, may cause high creatinine levels.

Muscle activity produces creatinine; the more the muscles work, the more creatinine is in the blood. While regular exercise is essential for good health, overexertion can cause the creatinine levels in the blood to spike.

A 2012 study noted that intense exercise increased creatinine levels in the bloodstream temporarily. It may be best for people to avoid strenuous activity until they have completed any treatment for the cause of the high creatinine levels.

However, people should not avoid exercise altogether, except in some extreme circumstances.

To maintain their exercise regimen, people who like weight training or resistance exercises could switch to yoga and body weight exercises during treatment. People who prefer cardio exercises, such as running or cycling, could consider changing to walking or swimming.”

My friend does not exercise. So what else could it be that is raising her creatinine? I went to New Health Advisor at https://www.newhealthadvisor.com/causes-of-elevated-creatinine.html which was quite comprehensive in answering the question.

“Kidney diseases or disorders can lead to high creatinine levels. Since the kidneys are the filters of wastes from the bloodstream, kidney damage means that there will be a buildup of creatinine beside other waste products in the body. Kidney conditions such as glomerulonephritis, acute tubular necrosis, kidney infection (pyelonephritis) and kidney failure can cause high creatinine levels. Reduced blood flow to the kidneys can also have a similar effect.

Other causes of elevated creatinine levels in blood include shock, dehydration, and congestive heart failure. These conditions lead to a reduction in blood flow to the kidneys, which interferes with their normal functions. High blood pressure, diabetic neuropathy, muscular dystrophy, rhabdomyolysis, eclampsia, and preeclampsia can also cause elevated serum creatinine.

In case a patient with renal dysfunction gets an infection like pneumonia, urinary tract infection, intestinal infection, or a cold, the creatinine level may rise within a short time.

Urine abnormalities such as long-term hematuria and proteinuria can also lead to high creatinine levels.

Taking drugs that have renal toxicity properties can also raise the levels of creatinine in the bloodstream. Such medications include chemotherapy drugs, ACE inhibitors, and NSAIDs like aspirin and ibuprofen among others.”

They also included excessive exercise, too much protein in the diet, fatigue, and inadequate rest.

I noticed each site I looked at mentioned that creatinine increase could be temporary. Perhaps a re-test is in order for my friend.

I know you’re already asking why she was surprised to find this on her lab report. She already has CKD which could be a cause of high creatinine levels. What worried her is that they are rising. Is her CKD getting worse? Or did she neglect to get adequate rest (as one possibility) before this particular blood test?

I can’t answer that since I’m not a doctor, although I hope I’ve been able to alleviate her worry until she gets to go to her nephrologist next week. Here’s hoping this was a welcome Christmas present, my friend.

Until next week,

Keep living your life!

Backed Up

Granted this is weird, but I have wondered for quite a while what – if anything – constipation has to do with Chronic Kidney Disease. Maybe my memory is faulty (Hello, brain fog, my old friend), but I don’t remember having this problem before CKD entered my life… or did I?

In my attempt to find out if there is a connection, I hit pay dirt on my first search.

“Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are more likely to develop in individuals with constipation than in those with normal bowel movements, according to a new study published online in the Journal of the American Society of Nephrology.

More severe constipation, defined as using more than one laxative, was associated with increasing risks of CKD and its progression.”

You can read the entire Renal and Urology News article at https://www.renalandurologynews.com/chronic-kidney-disease-ckd/constipation-associated-with-ckd-esrd-risk/article/572659/.

Wait a minute. This is not quite as clear as I’d like it to be. For example, what exactly is constipation? The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/digestive-diseases/constipation was of help here:

“Constipation is a condition in which you may have fewer than three bowel movements a week; stools that are hard, dry, or lumpy; stools that are difficult or painful to pass; or a feeling that not all stool has passed. You usually can take steps to prevent or relieve constipation.”

Well then, what’s severe constipation? A new site for me, HealthCCM at https://health.ccm.net/faq/267-acute-constipation defines severe or acute constipation as,

“Acute constipation is usually defined by a slowing of intestinal transit generating a decrease in bowel movements and the appearance of dehydration. The person will have difficulty defecating or may not be able to at all.”

This sounds downright painful, so let’s go back to my original query about how constipation and CKD relate to each other.

But first I want to share this very clear explanation of how constipation happens from Everyday Health at https://www.everydayhealth.com/constipation/guide/.

“The GI tract, which consists of a series of hollow organs stretching from your mouth to your anus, is responsible for digestion, nutrient absorption, and waste removal.

In your lower GI tract, your large intestine, or bowel — which includes your colon and rectum — absorbs water from your digested food, changing it from a liquid to a solid (stool).

Constipation occurs when digested food spends too much time in your colon.

Your colon absorbs too much water, making your stool hard and dry — and difficult for your rectal muscles to push out of your body.”

Keep in mind that diabetes is the number one cause of CKD as you read this. According to the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253

“Hormones help balance fluids in your body. Diseases and conditions that upset the balance of hormones may lead to constipation, including:

  • Diabetes
  • Overactive parathyroid gland (hyperparathyroidism)
  • Pregnancy
  • Underactive thyroid (hypothyroidism)”

Many of the sites I perused suggested drinking more water to avoid or correct constipation. But we’re CKD patients; our fluid intake (Well, mine, anyway) is restricted. I’m already drinking my maximum of 64 ounces a day. In the words of Laurel and Hardy’s Hardy, “Well, here’s another nice mess you’ve gotten me into!” It’s possible constipation contributed to my developing CKD and drinking more may help, but with CKD you’re limited to how much you can drink.

Another suggestion I ran into on many sites was increase your fruit and vegetable intake. Great, just great. I’m already at my maximum of three different fruits and three different vegetables – each of different serving sizes, mind you – daily.

Wikipedia at https://en.wikipedia.org/wiki/Constipation#Medications has a great deal of information about constipation. Remember though that anyone can edit any Wikipedia article at any time. Be that as it may, this sentence leaped out at me:

“Metabolic and endocrine problems which may lead to constipation include: hypercalcemiahypothyroidismhyperparathyroidismporphyriachronic kidney diseasepan-hypopituitarismdiabetes mellitus, and cystic fibrosis….”

Thank you, MedicineNet for reminding us that iron can cause constipation. How many of us (meaning CKD patients) are on iron tablets due to the anemia that CKD may cause? I realize some patients are even taking injections of synthetic iron to help with red blood production, something the kidneys are charged with and slow down on when they are in decline.

Apparently, another gift of aging can be constipation since your metabolic system slows down. That’s also what makes it so hard to lose weight once you reach a certain weight. I’m getting a lot of information here, but I’m still not clear as to how one may cause the other. Let’s search some more.

I think I just hit something. We already know that diabetes is the number one cause of CKD. Did you remember that high blood pressure is the second most usual cause of CKD? Take a look at this from Health at https://www.health.com/health/gallery/0,,20452199,00.html#inflammatory-bowel-disease-3:

“Constipation can be a side effect of some common drugs used to treat high blood pressure, such as calcium channel blockers and diuretics.

Diuretics, for instance, lower blood pressure by increasing urine output, which flushes water from your system. However, water is needed to keep stools soft and get them out of the body.”

Now we’re getting somewhere.

It gets even better. The American Association of Kidney Patients at https://aakp.org/dialysis/relieving-constipation/ not only offered more clarification, but offered a list of high fiber foods without going over most of our potassium and phosphorous limits. Fiber intake is considered another way to both avoid and help with constipation.

“Adults need 20-35 grams of fiber daily. However, for dialysis patients who have to limit their fluid intake, this may be too much since it is thought increased dietary fiber may require an increased fluid intake. Also, all patients are different so the amount of fiber needed to relieve constipation varies from person to person.

High Fiber Foods

Bran muffin                 ½ muffin

Brown rice (cooked)   ½ cup

Broccoli*                    ½ cup

Peach                          1 medium

Prunes*                       3

Prunes*                       3

Spaghetti (cooked)      ½ cup

Turnips*                      ¾ cup

(Each serving contains about 150mg potassium, 20-90mg phosphorus and 1 – 5.4 grams of fiber.) (*Items contains 2 or more grams of fiber per serving.)”

I’ve got the connection between constipation and CKD now; do you?

Until next week,

Keep living your life!

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

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!

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Getting It Right Once and For All

Brain fog is one thing, but I have forgotten the meaning of a certain phrase, looked it up, forgotten its meaning again, looked it up, forgotten its meaning again and so on for years. This has got to stop. That’s why I thought writing about it might ensconce the meaning in my brain once and for all. Bet you’re wondering what the phrase is by now. It’s multiple myeloma.

I think we all know that multiple means more than one, but more than one what in this case? And does adding it to the root word – myeloma – change its meaning in any way? Let’s find out together.

Do you know what the ICD is? Let me refresh your memory if you do. I defined it in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease in the following way:

“International Statistical Classification of Disease and Related Health Problems, provides the medical codes for illnesses.”

The Whole Health Organization currently released the 10th edition. There are three different codes for multiple myeloma in this latest edition according to www.findacode.com. I thought one of them would help us.

ICD-10-CM Diagnosis Code C90.00

Multiple myeloma not having achieved remission

Hypogammaglobulinemia co-occurrent and due to multiple myeloma; Light chain disease; Light chain nephropathy; Light chain nephropathy due to multiple myeloma; Multiple myeloma; Multiple myeloma stage i; Multiple myeloma stage ii; Multiple myeloma stage iii; Multiple myeloma w hypogammaglobulinemia; Smoldering multiple myeloma; Smoldering myeloma; Multiple myeloma with failed remission; Multiple myeloma NOS

ICD-10-CM Diagnosis Code C90.0

Multiple myeloma

solitary myeloma (C90.3-); solitary plasmactyoma (C90.3-); Kahler’s disease; Medullary plasmacytoma; Myelomatosis; Plasma cell myeloma

ICD-10-CM Diagnosis Code C90.01

Multiple myeloma in remission

ICD-10-CM Diagnosis Code C90.02

Multiple myeloma in relapse

We can discount C90.01 and C90.2 from the get go because we know that remission means subsiding and relapse means whatever it is has become active again.

I didn’t really understand the terms in the diagnosis codes but, from my fractured remembering, gathered this has to do with a sort of cancer. No harm; we know the coding and now need to find out what it is that’s being coded.

I jumped right over to the American Cancer Society at https://www.cancer.org/cancer/multiple-myeloma/about/what-is-multiple-myeloma.html and found exactly what I was afraid I would:

“Multiple myeloma is a cancer of plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system. The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are one of the main types of white blood cells in the immune system and include T cells and B cells. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Plasma cells are found mainly in the bone marrow. Bone marrow is the soft tissue inside bones. In addition to plasma cells, normal bone marrow is also the home for other blood cells such as red cells, white cells, and platelets.

In general, when plasma cells become cancerous and grow out of control, this is called multiple myeloma. The plasma cells make an abnormal protein (antibody) known by several different names, including monoclonal immunoglobulin, monoclonal protein (M-protein), M-spike, or paraprotein.

There are, however, other plasma cell disorders that also have abnormal plasma cells but do not meet the criteria to be called active multiple myeloma.”

One of them is monoclonal gammopathy of uncertain significance (MGUS) which I blogged about on April 30th of this year. Plasma cell disorders seem to be occupying my mind lately.

Wait, wait! Bone marrow. As was mentioned in SlowItDownCKD 2011, in writing about a Drugs.com article, it’s the kidneys that cause the

“…bone marrow … produce red blood cells.”

Yet, it’s the white blood cells that are part of the immune system. Remember my daughter Nima’s account of her gall bladder being removed in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2?

“…my white blood count was elevated to 12, an indication the gallbladder was infected.”

That 12 showed that she had many more than usual white blood cells which were necessary to fight the infection.

The University of Rochester Medical Center at https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=160&ContentID=35 explains succinctly:

“Your white blood cell count can be low for a number of reasons—when something is destroying the cells more quickly than the body can replenish them or when the bone marrow stops making enough white blood cells to keep you healthy. When your white blood cell count is low, you are extremely susceptible to any illness or infection, which can spiral into a serious health threat.”

One of those somethings could be multiple myeloma.

There’s another consideration here. As Chronic Kidney Disease patients, we have compromised immune systems. DaVita explained in SlowItDownCKD 2015:

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

“…. The immune system of a person with chronic kidney disease (CKD) becomes weakened, making it difficult to fight off many diseases and infections….”

This is one great big ball of wax. While bone marrow replacement is one treatment and radiation another for multiple myeloma, the most often employed treatment is drug therapy. Here’s where the kidneys come into play again. In SlowItDownCKD 2012, I quoted myself because I felt the following was so important:

“You may need to take a lower dosage of whatever drug was prescribed or, perhaps, take it less often. If your kidneys  are  not  fully  functioning,  the  drugs  are  not  effectively being removed from your blood. It would be similar to willfully taking a drug overdose if you do not make your doctors aware of your CKD when they prescribe for you.”

Uh-oh. I need some help here. Healthline at https://www.healthline.com/health/cancer/multiple-myeloma-kidney-failure to the rescue!

“Kidney failure in multiple myeloma is a complicated process that involves different processes and mechanisms. The way this happens is the abnormal proteins travel to the kidneys and deposit there, causing obstruction in the kidney tubules and altered filtering properties. Additionally, elevated calcium levels can cause crystals to form in the kidneys, which causes damage. Dehydration, and medications such as NSAIDS (Ibuprofen, naproxen) can also cause kidney damage.”

This was difficult to write, so thanks for keeping me company as I struggled with it.

One final note. I blogged about Antidote, a clinical trial company, last year. You’ll find them on the blogroll, too. This Wednesday, they’ll be helping to celebrate Clinical Trials Day by hosting a Twitter chat from noon to 1 pm. The topic is storytelling for awareness and you (yes, you) are invited to join in. Use #research chat. For those new to twitter chats, you need to follow Antidote to join the chat. Their ‘handle’ is @antidote_me. I’d be there myself if I didn’t already have one of those specialists appointments that you have to wait months and months for. My loss.

Until next week,

Keep living your life!

Apps Again

Last week I mentioned kidney diet apps and that I suspected the ones I wrote about in SlowItDownCKD 2016 may be outdated or not exist anymore. Let’s jump right in before I need to get up from the computer to walk around for a while. I’ve been working on another book and been sitting here a long time. We all know that’s not good for us.

This is from SlowItDownCKD 2016:

“According to GCFLearnFree.org – a program of Goodwill Community Foundation® and Goodwill Industries of Eastern NC Inc.® (GIENC®) – at http://www.gcflearnfree.org/computerbasics/understanding-applications/1/,

‘Simply put, an app is a type of software that allows you to perform specific tasks. Applications for desktop or laptop computers are sometimes called desktop applications, while those for mobile devices are called mobile apps.’

During an internet search, I found that NephCure which provides ‘detailed information about the diseases that cause Nephrotic Syndrome (NS) and Focal Segmental Glomerulosclerosis (FSGS)’ (and was one of the first organizations to interview me about CKD, by the way) – at http://nephcure.org/livingwithkidneydisease/managing-your-care/kidney-health-tracking-tools/helpful-mobile-apps/ was way ahead of me in discussing apps. This is what’s on their website:

Diet and Nutrition Apps

• KidneyAPPetite – Gives daily summaries of key nutrients for kidney health, check the nutritional value of foods before you eat it, and provides printable summaries to refer to. Great for patients on a renal diet! Cost: Free, Device: iOS

• Pocket Dietitian – Created by a Nephrologist, allows you to choose your health conditions and dietary restrictions to see recommended foods as well as keep track of what you have eaten. You can even see your past nutrition in graph form. Cost: Free, Device: iOS and Android

• My Food Coach – is designed to help you understand and manage all of your nutritional requirements. This app offers personalized nutrition information, recipes and meal plans. Cost: Free, Device: iOS and Android

• HealthyOut – Enables you to search and order nearby healthy food and browse for healthy options while out to eat. You can even choose a specific diet such as gluten free! Cost: Free, Device: iOS and Android

• Restaurant Nutrition – Allows you to search restaurants and look at nutritional values, locate nearby restaurants, and keep a food journal. The Restaurant Nutrition application shows nutritional information of restaurant foods. Cost: Free, Device: iOS and Android

While I could easily go to most of the apps’ websites by clicking on the name while I held down the control button, this was not the case with Pocket Dietician. I was able to find it and lots of descriptive information about it in the Google Play store, but kept getting the message that I had no devices. The help function on the site was not helpful.

What about My Food Coach? It has an extra feature that my favorite lacked: a warning when a recipe would bring you over your renal diet limits. It’s recipe oriented, which doesn’t endear it to me since I like to experiment cooking my big five ounces of protein daily with my three different size servings of different fruits that are on my renal diet. I also avoid red meat.

HealthyOut, while not specifically for CKD, does have a function for the Mediterranean diet which is more often than not recommended for us. I thought this was a hoot since it never occurred to me that you can check restaurant foods by the restaurant name. I am adding this app to my iPhone.”

It looks like I was wrong. Most of these are still available. Unfortunately KidneyDiet, my all-time favorite, is no more. Neither is Restaurant Nutrition. But let’s see what other apps are available for us.

If sodium (salt) is a problem for you, there’s an app for that. According to For Your Kidney at http://foryourkidney.com/en/2016/01/04/5-best-apps-kidney-health/:

“Sodium One is a user friendly Sodium Counter app. Patients with High Blood Pressure or Chronic Kidney Disease can benefit from this app a lot. The App allows you to track water intake as well as exercise and weight history. The main focus of Sodium One however, is to manage your daily sodium allowance. The tracking is actually very accurate when it comes to calorie counts. A great extra is that this app does not require an internet connection.”
This is $0.99 and only available in IOS. That’s Apple.

I do want to mention there are apps specifically for those on dialysis. I have not included them in this blog, although NephCure did include KidneyAPPetite. An internet search for ‘dialysis apps,’ or something along that line, will help you find them.

I’ve tried a few other apps that were not dedicated to those with CKD and found moderate success with them. One is Keto, which bills itself as “Stupid Simple”… and it is. However, it’s limited to carbs, fat, and protein. You’re on your own for phosphorous, potassium, and sodium. Oh, KidneyDiet, come back! The nice part of Keto is that you can scan barcodes (Is that really one word these days?) and add your own foods and meals IF you upgrade from the basic free version. Their website at https://play.google.com/store/apps/details?id=com.venninteractive.ssketo  tells you this is only available for Android, but I have it on my IOS device.

Under Armour’s MyFitnessPal at https://freepps.top/apps/health-fitness/calorie-counter-myfitnesspal has been around for a while. Again, while this is not perfect for those with CKD, it is a great help. I like that you can set goals and request reminders about your goal, as well as add foods. Of course, Premium offers you a lot more… and charges you accordingly. Articles about exercise and weight pop up, too. And then there are recipes. Again, it doesn’t do the whole trick, although it does count potassium, protein, sodium and calories . What’s missing is phosphorous. The bonuses are carb, fat (by type, no less) cholesterol, fiber, sugar, vitamins A & C, calcium, and iron counters. This is also a free Apple app.

Lose It! at https://www.loseit.com/ is not as comprehensive for the CKD patient. It allows you to track fat, carbs, protein, and calories. Here, again, you can set your goals. You can even take pictures of your food to track it. However, I find I want something more CKD oriented with potassium, phosphorous, and sodium counters included. This looks like it may be a good app for weight loss, but I’m wondering how much help it is for the CKD patient.. This is a free Android app.

At this point, I stopped checking out apps. There are so many more in just a little over the year I last looked at apps. But they’re not quite for the likes of us. It looks like MyFitnessPal is the closest we can come to a kidney app, unless you’re on dialysis. Then I’d go for KidneyAPPetite.

Before I go, here’s a shameless plug for my new book. It’s Sort of Dark Places, available on Amazon and is not CKD related at all. I’ve fictionalized the stories people have told me about their most difficult times. I found it cathartic to write even though these are not my stories. Advance readers have told me they did, too. Give it a try.

In honor of the great Dr. Martin Luther King’s birthday, the first person who hasn’t already won a free book that lets me know they’ve read today’s blog wins a copy of SlowItDownCKD 2012.

Until next week,
Keep living your life!

Chemo and Kidneys

Cancer has become an everyday word around here. While I have no personal acquaintance with cancer, too many friends and readers do. That got me to thinking. If you had chronic kidney disease and cancer, how would your already poorly functioning kidneys react to the chemotherapy?

We do need to start with some basics here. First, what is chemotherapy? According to the American Cancer Society at https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/chemotherapy/how-chemotherapy-drugs-work.html:

“More than 100 chemotherapy or chemo drugs are used to treat cancer – either alone or in combination with other drugs or treatments. These drugs are very different in their chemical composition, how they are taken, their usefulness in treating specific forms of cancer, and their side effects.

Chemotherapy works with the cell cycle

Chemotherapy drugs target cells at different phases of the process of forming new cells, called the cell cycle. Understanding how these drugs work helps doctors predict which drugs are likely to work well together. Doctors can also plan how often doses of each drug should be given based on the timing of the cell phases.

Cancer cells tend to form new cells more quickly than normal cells and this makes them a better target for chemotherapy drugs. However, chemo drugs can’t tell the difference between healthy cells and cancer cells. This means normal cells are damaged along with the cancer cells, and this causes side effects. Each time chemo is given, it means trying to find a balance between killing the cancer cells (in order to cure or control the disease) and sparing the normal cells (to lessen side effects).”

Uh-oh, “normal cells are damaged along with the cancer cells.” Let’s see if we can get a bit more specific here and find out what happens to kidney cells. The Canadian Cancer Society at http://www.cancer.ca/en/cancer-information/diagnosis-and-treatment/chemotherapy-and-other-drug-therapies/chemotherapy/side-effects-of-chemotherapy/kidney-damage-and-chemotherapy/?region=on#ixzz51dnKcgtI offers the following information:

“Some chemotherapy drugs can damage the kidneys (nephrotoxicity). The kidneys break down and remove many chemotherapy drugs from the body. When chemotherapy drugs break down, they make products that can damage cells in the kidneys, ureters and bladder. The potential for kidney damage varies with the type of chemotherapy drug used.

Causes

Chemotherapy drugs that can cause kidney damage include:
• cisplatin (Platinol AQ)
• carboplatin (Paraplatin)
• nitrosureas, such as carmustine (BiCNU, BCNU)
• mitomycin (Mutamycin)
• methotrexate – especially if high doses are used

Whether or not a chemotherapy drug will cause kidney damage depends on:
• the dose of the drug used
• if other drugs, which also have the potential to damage the kidney, are used at the same time
• if the person already has kidney disease”

Look at the last item on the list. That’s us; we already have kidney disease. Cancer.Net at https://www.cancer.net/navigating-cancer-care/older-adults/when-cancer-not-your-only-health-concern gives us just a bit more information about chemotherapy when you already have CKD. They also mention diabetes which is one of the leading causes of CKD.

“Diabetes. If you have diabetes, you need to monitor your blood glucose (blood sugar) levels closely during cancer treatment. Some chemotherapy and medications used to lower side effects (such as steroids) can raise your blood sugar levels. These levels might also go up because you are less physically active or under stress. Side effects like nausea and vomiting also affect your blood sugar.

Your doctor might also recommend:
• Taking low-sugar food supplements
• Taking different anti-nausea medications
• Using fast-acting insulin at times during cancer treatment
• Keeping a record of your blood sugar levels. You and your doctor can look at them during clinic visits. Controlling your blood sugar will help make sure you can stay on your cancer treatment schedule.

Kidney disease. Your kidneys might not work as well as you get older. So adults over 65 might have more problems with some types of chemotherapy. The drugs can be difficult for your kidneys to handle. This can raise your risk of kidney problems. How well your kidneys work might determine the type of chemotherapy you can have, or how often you have it.

If you are on dialysis, talk with your oncologist. Dialysis cleans your blood when your kidneys do not work well enough to do it. But dialysis may also clean the chemotherapy drugs out of your body before they can work.”

This does address older adults which is why I believe they mention age as a CKD risk factor. We know that’s not the only risk factor.

But there is hope. Take a look at what appeared in NDT (the respected European Nephrology, Dialysis, Transplantation Journal). It’s a bit a technical, but you can read more of the study at https://academic.oup.com/ndt/article/30/12/1979/2459906:

“One of the important drug-related problems in patients with renal impairment is inappropriate medication use and dosing errors…. Along this line, many cytotoxic drugs and their active/toxic metabolites are eliminated through the kidney depending on how much of the substance undergoes renal filtration, tubular secretion and/or tubular reabsorption. Hence, patients with both acute kidney injury (AKI) and CKD receiving chemotherapeutic agents often possess alterations in their pharmacokinetic parameters such as drug absorption, distribution, protein binding, biotransformation and renal excretion, which may result in the accumulation of potentially toxic components and over-dosage …. Therefore, clinicians must be wary to appropriately adjust doses of drugs that are excreted primarily by the kidneys. This requires dosing according to the calculated or measured creatinine clearance or eGFR formulas, which will allow the safe use of chemotherapy in patients with underlying kidney disease.”

Interesting to me is readers and friends’ reactions to chemo. Some have none, other than high energy for a day or two after their treatment. Others are nauseous and depleted of energy. It depends on your unique body chemistry and the ingredients in your chemo cocktail (for lack of a better term).

You can probably add quite a bit more – and I wish you would – since I am limited by a word count. Readers with kidney cancer, will you weigh in? And those who have both CKD and chemo, would you, too?

Brag time! After being included in Healthline’s Top Six Kidney Disease Blogs two years in a row, this year SlowItDownCKD has been awarded a place on BlogFeedSpot’s Top 75 Nephrology Blogs GLOBALLY. You know that expression the British readers use – gob smacked? That’s me!

I hope your Chanukah has been a mass of sweet, fried celebrations. See you on Christmas.

Oh, there’s still time to win a copy of the newly published SlowItDownCKD 2011 in the Chanukah Book Giveaway Contest. If you haven’t won a book this year, all you have to do is be the first person to correctly answer: What percentage of people with CKD are aware they have the disease?

Until next week,
Keep living your life!

It’s the Heat AND the Humidity

Hawaii is so beautiful… and Maui so healing. There was just one thing, though. I somehow managed to forget how humid it is. As you may or may not remember, after we’d come back from the Caribbean and from San Antonio last year, I vowed never to go to a humid climate during the summer again. Well, Maui was Bear’s 71st birthday present so maybe that’s why I so conveniently forgot my vow.

Here’s why I shouldn’t have. This is updated from SlowItDownCKD 2016.

ResearchGate at https://www.researchgate.net/publication/263084331_Climate change and Chronic Kidney Disease published a study from the Asian Journal of Pharmaceutical and Clinical Research from February of 2014 (That’s over three years ago, friends.) which included the following in the conclusion:

“Our data suggest that burden of renal diseases may increase as period of hot weather becomes more frequent. This is further aggravated if age advanced and people with chronic diseases like diabetes and hypertension.”

That makes sense, but how will this happen exactly? I included this June, 2010, article in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1. Apparently, heat (and humidity) has been an acknowledged threat to our kidneys for longer than we’d thought.

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’ Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

By the time this book’s twin, The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, was ready for publication, the (then) spokesman for The National Kidney Foundation – Dr. Leslie Spry – had this to say about heat and humidity:

“Heat illness occurs when body temperature exceeds a person’s ability to dissipate that heat and is commonly diagnosed when the body temperature approaches 104 degrees Fahrenheit and when humidity is greater than 70 percent. Once the humidity is that high, sweating becomes less effective at dispersing body heat, and the core body temperature begins to rise.”

The entire article is at http://www.huffingtonpost.com/leslie-spry-md-facp/heat-illness_b_1727995.html.

Oh, so humidity affects sweating and body heat rises. Humidity greater than 70%. That covers almost the entire time we were in the Caribbean and Texas (and now Hawaii). Well, what’s the connection between heat illness and CKD then?

The CDC offers the following advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.
• Drink more water than usual and don’t wait until you’re thirsty to drink.
• Check on a friend or neighbor, and have someone do the same for you.
• Check the local news for health and safety updates regularly.
• Don’t use the stove or oven to cook——it will make you and your house hotter.
• Wear loose, lightweight, light-colored clothing.
• Take cool showers or baths to cool down….”

Uh-oh, we’re already in trouble. Look at the first suggestion: our fluid intake is restricted to 64 oz. (Mine is, check with your nephrologist for yours.) I know I carefully space out my fluids – which include anything that can melt to a liquid – to cover my entire day. I can’t drink more water than usual and, sometimes – on those rare occasions when I’ve been careless – have to wait until I’m thirsty to drink.

Diabetes is the foremost cause of CKD. I was curious how heat affected blood sugar so I popped over to Information about Diabetes at http://www.informationaboutdiabetes.com/lifestyle/lifestyle/how-heat-and-humidity-may-affect-blood-sugar and found this:

1. If our body is low on fluids, the kidneys receive less blood flow and work less effectively. This might cause blood glucose concentrations to rise.
2. If someone’s blood sugar is already running high in the heat, not only will they lose water through sweat but they might urinate more frequently too, depleting their body’s fluids even more.

There’s more at the website if this interests you.

According to the U.S. Department of Veterans’ Affairs at https://www.visn9.va.gov/VISN9/news/vhw/summer07/humidity.asp,
“Hot weather can lead to dehydration, heat exhaustion and heat stroke, but the dangers increase when you add humidity to the mix. When the temperature rises above 70F and the humidity registers more than 70 percent, you need to be on the alert.

Who’s most at risk?
People with high blood pressure, heart disease, lung disease or kidney disease (I made that bolded.) are most vulnerable to the effects of humid conditions, as are those over age 50. Other risk factors that can affect your body’s ability to cool itself include being obese; having poor circulation; following a salt-restricted diet; drinking alcohol; having inefficient sweat glands; and taking diuretics, sedatives, tranquilizers or heart or blood pressure medication.”

So, pretty much, the way to deal with heat and humidity having an effect on your (and my) CKD is to avoid it. That doesn’t mean you have to move, you know. Staying in air conditioning as long as you can so your body is not overheated and can better handle this kind of weather will help. Wearing a hat and cool clothes will also help. I certainly relearned the value of wearing cotton this past week. It’s a fabric that breathes. I’ll bet that this is how those CKD patients who live in humid areas deal with it. Feedback, anyone? Robin? Mark?

Now for some great, unrelated news: One of our daughters gave Bear the best birthday present. She and her husband FaceTimed us in Maui on Bear’s birthday to tell us we’re going to be grandparents. This is a first for them… and for us. To make this even better – as if that were possible – little one is expected on our anniversary. I love the ebb and flow of the universe, don’t you?

Until next week,
Keep living your life!

Recreating Creatinine

I throw a lot of terms around as if we all understood them. Sorry for that. One reader made it clear he needed more information about creatinine. In another part of my life, I belong to a community that calls reviewing or further explanation of a certain topic recreating… and today I’m going to recreate creatinine.

Let’s start in the beginning. This is what I wrote in the beginning of my CKD awareness advocacy in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease :

“Creatinine is a waste product of muscle activity. What actually happens is that our bodies use protein to build muscles and repair themselves. This used protein becomes an amino acid which enters the blood and ends up in the liver where it is once again changed.  This time it’s changed into urea which goes through the kidneys into the urine.

The harder the muscles work, the more creatinine that is produced and carried by the blood to the kidneys where it also enters the urine.  This in itself is not toxic, but measuring the urea and creatinine shows the level of the clearance of the harmful toxins the body does produce.  These harmful toxins do build up if not voided until a certain level is reached which can make us ill. Working kidneys filter this creatinine from your blood.  When the blood levels of creatinine rise, you know your kidneys are slowing down.  During my research, I discovered that a non-CKD patient’s blood is cleaned about 35 times a day. A CKD patient’s blood is cleaned progressively fewer times a day depending upon the stage of the patient’s disease.”

Got it. Well, I did have to read it a couple of times to get it straight in my mind. Now what? Let’s see what more information I can find about what this means to a CKD patient. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 contains the following explanation from DaVita,

“Because there are often no symptoms of kidney disease, laboratory tests are critical. When you get a screening, a trained technician will draw blood that will be tested for creatinine, a waste product. If kidney function is abnormal, creatinine levels will increase in the blood, due to decreased excretion of creatinine in the urine. Your glomerular filtration rate (GFR) will then be calculated, which factors in age, gender, creatinine and ethnicity. The GFR indicates the person’s stage of Chronic Kidney Disease which provides an evaluation of kidney function.”

I thought you might want to know more about this test, so I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 since I remembered including The National Kidney Disease Education Program at The U.S. Department of Health and Human Services’ information (including some reminders about definitions) concerning the process of being tested for CKD.

  1. “A blood test checks your GFR, which tells how well your kidneys are filtering.…

2. A urine test checks for albumin. Albumin is a protein that can pass into the urine when the kidneys are damaged.

If necessary, meaning if your kidney function is compromised, your PCP will make certain you get to a nephrologist promptly.  This specialist will conduct more intensive tests that include:

Blood:

BUN – BUN stands for blood urea nitrogen.

Creatinine The creatinine blood test measures the level of creatinine in the blood. This test is done to see how well your kidneys work.

Urine:

Creatinine clearance – The creatinine clearance test helps provide information about how well the kidneys are working. The test compares the creatinine level in urine with the creatinine level in blood.”

Aha! So there are two different creatinine readings: blood or serum and urine. By the way, MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=5470 defines serum as “The clear liquid that can be separated from clotted blood. Serum differs from plasma, the liquid portion of normal unclotted blood containing the red and white cells and platelets. It is the clot that makes the difference between serum and plasma.”

This is starting to get pretty complex. It seems that yet another test for CKD can be conducted with a urine sample. This is from SlowItDown 2015.

“In recent years, researchers have found that a single urine sample can provide the needed information. In the newer technique, the amount of albumin in the urine sample is compared with the amount of creatinine, a waste product of normal muscle breakdown. The measurement is called a urine albumin-to-creatinine ratio (UACR). A urine sample containing more than 30 milligrams of albumin for each gram of creatinine (30 mg/g) is a warning that there may be a problem. If the laboratory test exceeds 30 mg/g, another UACR test should be done 1 to 2 weeks later. If the second test also shows high levels of protein, the person has persistent proteinuria, a sign of declining kidney function, and should have additional tests to evaluate kidney function.

Thank you to the National Kidney and Urologic Diseases Information Clearinghouse, A service of the NIH, at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/#tests for that information.”

Is there more to know about creatinine? Uh-oh, this savory little tidbit was reprinted in SlowItDownCKD 2016 from an earlier book.

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

This seems to be calling for a Part 2. What do you think? There’s still BUN and albumin to deal with. Let me know what else you’d like to see included in that blog.

Have I mentioned that I’ll be presenting a display about CKD Awareness at Landmark’s Conference for Global Transformation? Or that both an article and an update about CKD Awareness will be included in their journal?

Until next week,

Keep living your life!

Women and Water (Men, too)

Welcome to March: National Kidney Month and Women’s History Month. I’m going to fudge a bit on the ‘History’ part of that as I did last month with Black History Month. I don’t often have guest bloggers, but this month will feature two women as guest bloggers in honor of Women’s History Month. The first is Jessica Walter, who sent me the following email last month:

Hi There,

I am a freelance health and food writer, I have teamed up with a small senior lifestyle advice site, I worked with them to develop a complete guide on how to eat better and be healthier from a dietary point of view. This includes detailed information on why being hydrated is so important. … you can check out the article here:

https://www.senioradvisor.com/ blog/2017/02/7-tips-on- developing-better-eating- habits-in-your-senior-years/.

I liked what Jessica had to say and how easily it could be adapted not only for senior Chronic Kidney Disease patients, but all Chronic Kidney Disease patients.

In addition, she sent me this short article about hydration and CKD. It’s easy to read and has some information we constantly need to be reminded of.

Staying Hydrated When You Have Chronic Kidney Disease

We all know that drinking water is important for our health, and monitoring fluid intake is critical for those with chronic kidney disease. Too much water can be problematic, but so can too little. Dehydration can be serious for those with chronic kidney disease. If you are suffering from vomiting, diarrhea, fever, or diabetes, or if you urinate frequently, you may become dehydrated because you are losing more fluid than you are taking in. For those without chronic kidney disease, the solution is to increase the intake of water until the body is sufficiently hydrated.

Since dehydration can decrease blood flow to the kidneys, and as fluid intake must be controlled in patients with chronic kidney disease, it’s important to closely monitor their fluid intake and loss in these circumstances.

Recognizing The Signs

The first step is to recognize the physical signs of dehydration. You may have a dry mouth or dry eyes, heart palpitations, muscle cramps, lightheadedness or fainting, nausea, or vomiting. You may notice a decrease in your urine output. Weight loss of more than a  pound or two over a few days can also be an indicator of dehydration. If you are taking ACE inhibitors and ARBs, such as lisinopril, enalapril, valsartan, or losartan, or water pills or diuretics, these medications can harm your kidneys if you become dehydrated. It is doubly important to be aware of signs of dehydration if you are on any of these medications.

Steps to Take

To rehydrate your body, start by increasing your intake of water and ensure that you are eating plenty of fruits and vegetables. (Me here: remember to stay within your renal diet guidelines for fruits, vegetables, and fluids.)If you cannot keep water down, or if increased consumption doesn’t alleviate the signs of dehydration, contact your health care provider  immediately.

They may also recommend a different fluid than plain water since electrolytes and minerals can also be reduced if you are dehydrated, but you may still need to watch your intake of potassium, phosphorus, protein, and sodium. Your doctor may recommend an oral rehydration solution that will restore your body to a proper level of hydration. If you have a fluid restriction because you are on dialysis, you should consult your healthcare provider if you have issues with or questions about hydration. Taking in or retaining too much fluid when you have these restrictions can lead to serious complications, including headaches, swelling, high blood pressure and even stroke. Carefully monitoring your fluid intake and watching for signs of dehydration will help you to avoid the consequences of dehydration.

I’ve blogged many times over the last six years about hydration. I’m enjoying reading this important material from another’s point of view. I’m sorry Jessica’s grandmother had to suffer this, but I’m also glad Jessica chose to share her writing about it with us.

 

This June, 2010, article included in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 furthers explains:

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

The CDC also offers advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

  • Drink more water than usual and don’t wait until you’re thirsty to drink.
  • Check on a friend or neighbor, and have someone do the same for you.
  • Check the local news for health and safety updates regularly.
  • Don’t use the stove or oven to cook——it will make you and your house hotter.
  • Wear loose, lightweight, light-colored clothing.
  • Take cool showers or baths to cool down.
  • Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning

It’s clear we need to keep an eye on our hydration. While we’re doing that, keep the other eye out for SlowItDownCKD 2016 purposely available on World Kidney Day on Amazon.

Until next week,

Keep living your life!

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

IMG_2982To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? IMG_2980Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

thoracic-aortaI purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”graduation

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

FullSizeRender (2)However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  IMG_2982alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the bottled waterfunction of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”laughing

Until next week,

Keep living your life!

Starting the New Year with a Miracle

fireworksHappy New Year and welcome to 2017.  We did our usual stay in, watch movies, and toast with non-alcoholic champagne (I know that’s contradictory.) at midnight.  With our New York daughter here, it was even more meaningful.

A new year brings to mind new beginnings… and that leads me to Part 3 of the miracle series, as promised. I am so, so serious about this and hope you decide to take on for yourself causing a miracle in CKD by sharing information.

I was thinking about social media the other day. Where are the public service announcements about Chronic Kidney Disease?  I am still – nine years after my diagnose – knocking on seemingly closed doors to encourage Public Service Announcements everywhere. While the public doesn’t seem as involved with network television or radio as they were when I was younger, we now have Twitter, Facebook, Instagram, LinkedIn, and Tumblr to name just a few ways we can share.

I use a both a Facebook page and a Twitter account to post one fact about or information pertinent to those with CKD daily. Join me at newslowitdownckdfbcoverSlowItDownCKD on Facebook and @SlowItDownCKD on Twitter. I also monitored Libre’s Tweet Chat with Gail Rae 1/10/12. I knew nothing about Twitter at the time, but it was a way to share the information I had. You may not want to do this, but feel free to ‘steal’ the information posted and share it with others.

There are also Podcasts, Internet Radio Shows, YouTubes, etc. to share what the public needs to know about CKD. A YouTube can be viewed by one person who posts it on Facebook and go viral. Don’t bother looking at mine. They’re pretty painful. I’ll look into this again at a later date.

On the other hand, these are some of the social media venues that interviewed me: The Edge

Podcast 5/9/16, Online with Andrea 3/23/15 & 3/07/12, What Is It? How Did I Get It? 2/17/12, and Improve Your Kidney Health with Dr. Rich Snyder, DO 11/21/11. I never knew these venues existed before I started working towards the miracle I wanted to cause.

Lo and behold, my sharing brought others who wanted to know about CKD, so I was profiled by Nutrition Action Healthletter, Center for Science in the Public Interest 9/16, New York State United Teachers ‘It’s What We Do’  8/9/16, and Wall Street Journal ‘Health Matters’  1/13/14. Remember that Clairol commercial in last week’s blog?

Let’s say you agree that sharing can cause a miracle in Chronic Kidney Disease and want to join in living a life causing this miracle. The first thing you’d want to do is learn about CKD. The American Kidney Fund and the National Kidney Foundation both have a wealth of information written AKF logofor the lay person, not the medical community. By the way, the National Kidney Foundation also has information about NKF-logo_Hori_OBCKD globally. Maybe you’d rather join in World Kidney Day gatherings and distribute materials. Then keep an eye on World Kidney Day’s Twitter account for locations around the world.

As you can see, I’ve been creating this miracle is by writing for these organizations and more kidney specific ones, as well as guest blogging for various groups. You may not choose to do that… but you can speak at your religious group meetings, your sports league, your weekly card game, or whatever other group you’re comfortable with.

A miracle doesn’t have to be profound. You can help create this one. All you need is a little education about CKD and the willingness to introduce the subject where you haven’t before.friends

I live my life expecting miracles and I find they happen.  This miracle that I’m causing – and is happening – has been (and is) created by sharing, sharing, sharing. The more than 200 million people who have Chronic Kidney Disease need this information, to say nothing of those who have yet to be diagnosed.

kidneys5There aren’t that many organs to go around for those who didn’t know they had CKD and progressed to End Stage Renal Disease.  We know that transplantation is a treatment, not a cure, and one that doesn’t always last forever. We also know that kidneys from living donors usually last longer than those from cadaver donors. Share that, too.

We have our no cost, no pain, no tools needed miracle right on our lips… or at our fingertips. Start sharing, keep sharing, urge others to share, and help to prevent or slow down the progression in the decline of kidneys worldwide. Sharing is causing a miracle in CKD. Both deaths and hospitalizations for this disease have declined since 2008. If that isn’t a miracle, I don’t know what is. I keep saying I live my life expecting miracles; this is one of them.hearing

I was a private person before this disease. Now, in addition to the Facebook page and twitter accounts, I make use of an Instagram account (SlowItDownCKD) where I post an eye catching picture daily with the hash tag #SlowItDownCKD. This brings people to my weekly blog about CKD – as does my Instagram account as Gail Rae-Garwood – and the four books I wrote about it: one explaining it and the others the blogs in print – rather than electronic form for those who don’t have a computer or are not computer savvy. Time consuming? Oh yes, but if I expect to live a life of miracles, I need to contribute that time to share what I can about the disease and urge others to do the same.IMG_2979

I am urging you to realize you are the others I am asking to help cause a miracle in Chronic Kidney Disease. As the Rabbinic sage Hillel the Elder said, “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?” Now. You. Me. Others. CKD.

Until next week,

Keep living your life!

Is it CKD? Or Is It Arizona?

I’ve written about my dismay at thinning hair. By the way, I’ve come to terms with that rather than trying any product other than a new shampoo. What helped me come to that decision was a date day picture. My hair looked like straw in that picture and probably had for a while, although I hairhadn’t taken note of it.

It was dry, terribly dry. Well, I do live in Arizona. Our annual relative humidity index is about 31%. Thank you to Climatemps.com at http://www.phoenix.climatemps.com/humidity.php for this information.  For those of you (like me) who never thought about it before, I found the following excellent explanation of humidity at https://www.britannica.com/science/humidity.

“Care must be taken to distinguish between the relative humidity of the air and its moisture content or density, known as absolute humidity. The air masses above the tropical deserts such as the Sahara and Mexican deserts contain vast quantities of moisture as invisible water vapour. Because of the high temperatures, however, relative humidities are very low.”

sun-graphic1Hmmm, Mexican deserts…high temperatures… yep, that’s us. Wait a minute. My youngest and my step-daughters live here, too. They have beautiful, luxurious hair.  My delightful neighbor is a little older than my daughters, but her hair is always healthy looking and attractive. Okay, I’m older but I also have Chronic Kidney Disease.

Let’s take a look at what age can do to your hair first. (Saving the best for last, of course.) The Natural Society (I do occasionally check these sites.) at http://naturalsociety.com/2-factors-causing-thinning-hair-aging-not-one/ tells us:

“Low level of thyroid hormone can cause hair loss because it slows the metabolic rate throughout the body, a reason that low thyroid and weight gain often go hand in hand. This slowing extends to scalp follicles, resulting in premature release of the hair shaft and root, and a delay in producing replacement hairs. Early graying is another indication of low thyroid, as is the loss of hairs from the temporal edges of the eyebrows.”

Interesting, but it doesn’t talk about dryness, just hair loss… and my thyroid levels have always been fine.

Let’s try again. Prevention.com at http://www.prevention.com/beauty/anti-aging-care-thinning-brittle-hair  hit the nail on the head for me:

“But after you hit 40, the damage begins to go deeper, extending to the hair’s inner cuticle, known as the endocuticle.endocuticle

This type of damage is a result of the body’s reduced ability to repair itself, says Nicole Rogers, MD, assistant clinical professor of dermatology at Tulane University. In your 20s and 30s, the body (including your hair) bounces back from outside damage fairly quickly. But as you hit middle age, hair breaks down more quickly and the outer cuticle is repaired at a slower rate, leaving the inner cuticle vulnerable to the same outside attacks it once was shielded from.”

After you hit 40? That changed my entire outlook. At almost 70, I was actually lucky that I’d had so many years without dry hair. Amazing how information like this can reverse your thinking.

But I have CKD. Was this adding to the dry hair problem? I went to my old standby DaVita at https://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/hair,-nails-and-chronic-kidney-disease/e/4733 for help:

“… hair can become visibly abnormal when you develop a disease. Some people experience hair breakage or find that their hair falls out, or sometimes both.”

That tickled my memory. Oh, I remember writing this in What Is It and How Did I Get It? Early and Moderate Stage Chronic Kidney FullSizeRender (2)Disease.

“… oddly enough, my curly hair would become temporarily straight if I were incubating some illness or other…”

All right, that helps a bit, but – as usual – I wanted to know why. Another old favorite, WebMD at http://www.webmd.com/beauty/dry-hair-causes was helpful in a general, non-CKD, way:

“Your scalp isn’t making enough moisture. Hair has no natural lubrication. It relies on oils made in the hair root to keep your hair moisturized and looking lustrous.

Sometimes, hair doesn’t make enough oil, which leads to dry hair. (Likewise, roots in overdrive lead to oily and greasy hair.) As you age, your hair naturally makes less oil.”

Well, it looks like age, humidity, and disease – including Chronic Kidney Disease – all have something to do with dry hair. I sort of, kind of, remembered hydrating my hair with some home remedy when I was younger and had caused some damage by skiing in the sun or playing in a chlorinated swimming pool too much. Something about mayonnaise.  NaturallyCurley.com (How apt!) at http://www.naturallycurly.com/curlreading/products-ingredients/mayonnaise-hair-treatment-how-to/ explains:

“Mayonnaise does contain some hair healthy ingredients like lemon juice, vinegar and soybean oil which contain fatty acids and vitamins that can boost shine and act to seal in moisture.”

My method was ridiculously simple:

  1. Work the mayonnaise into your hair (It’s fun.).
  2. Plop on a shower cap.
  3. Leave it alone for about half an hour.
  4. Rinse out the by now gooey mess.
  5. Work at washing it out of your hair with a gentle shampoo.

I tried this last night and am very happy with the results. Maybe – in this case – it is just that easy.

I want to remind you that each of the websites I mention will give you more information about the particular topic you’re interested in.

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I had a really nice surprise the other day and wanted to share it with you. A little background is necessary first. I was a high school English teacher in New York City for 34 years before I retired and moved to Arizona. As such, I joined my union – The United Federation of Teachers. Because I did, I’m also a member of the New York State United Teachers. They publish a newspaper which has a section entitled ‘Kudos,’ that applauds the accomplishments of their members. As a retired teacher, I glance through the paper each time it arrives. This is what I found in the Fall 2016 issue:

 

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Thank you, thank you, thank you. These are non-Chronic Kidney Disease people appreciating writings about Chronic Kidney Disease.

Until next time,

Keep living your life!

The American Kidney Fund Blog

AKF logoI was honored that The American Kidney Fund (www.kidneyfund.org) asked me to write a blog for them. This is that blog. Once it was published last Thursday, I started thinking. If you share the blog and ask those you shared with to share it, too, and they asked their friends to share it, too… image how many people would become aware of Chronic Kidney Disease. Will you do that?

Slowing Down CKD—It Can Be Done

When a new family doctor told me nine years ago that I had a problem with my kidneys—maybe chronic kidney disease (CKD)–my first reaction was to demand, “What is it and how did I get it?”

No doctor had ever mentioned CKD before.

I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow it down immediately. I wanted to know how medication, diet,stages of CKD exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when we are most shocked, confused, and maybe even depressed—and the stages at which we have a workable chance of doing something to slow down the progression in the decline of our kidney function.

I’ve learned that 31 million people—14 percent of the population—have CKD, but most don’t know they have it. Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before it was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.

I saw a renal dietician who explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out bananawent my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last nine years: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them.

For a very short time, I was also taking a drug to control my pre-diabetes, but my doctor and I achieved the same effects by changing my diet even more. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I used to dance vigorously several nights a week; now it’s once a week with weights, walking, and a stationary bike on the other days. I think I took sleep for granted before CKD, too, and I now make it a point to blues dancersget a good night’s sleep each day. A sleep apnea device improved my sleep—and my kidney function rose another two points.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. I ended up happily retiring from both acting and teaching at a local college, giving me more time to work on my CKD awareness advocacy.

I was sure others could benefit from all the research I had done and all I had learned, so I wrote my first book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, in 2011. I began a blog after a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their villages. I now have readers in 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor.

What is itEach time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools can help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

My experience proves that you can slow down CKD. I was diagnosed at stage 3 and I am still there, nine years later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 70 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

SlowItDownCKD is the umbrella under which Gail Rae-Garwood writes her CKD books and blog, offers talks, participates in book signings, is interviewed on podcasts and radio shows, and writes guest blogs. Her website is www.gail-raegarwood.com.

Until next week,

Keep living your life!

It’s Not Lemonade

Why drinking water with lemon is good for you screamed The Chicago Tribune at me today. Hmmm, I’d been wondering about that. Last week, happy birthdayI’d attended the 60th birthday celebration of my friend Naomi. She is studying nutritional counseling. That’s right: studying at age 60. As you can tell, no grass grows under the feet of the people in my social circle.

The celebration was held in one of the beautiful resorts out here in Arizona, The Sanctuary, in The Jade Bar to be exact. It was an odd location since this bar was long and narrow with couches and comfortable chairs lined up, but no place to mingle or chat in small groups. We ended up climbing over each other just to get to the rest room. Yet, my friend came running up to greet us.

Why? She wanted to know if I was drinking the water with lemon first thing in the morning as she’d suggested when I was a test case for one of her classes. She explained to me how important it was to people and her friends Lily and Patty leaned over to verify with their own personal anecdotes.

That, of course, got me to thinking. What was so special about this? Sure, it would warm up the vocal chords if you drank the lemon in warm water, but what else?

According to Tribune’s article at http://www.chicagotribune.com/lifestyles/health/sc-one-simple-thing-lemon-water-0420-20160415-story.html,

“Health experts say the acidity of the lemons improves digestion. Lemons contain potent antioxidants, which can also protect against disease, says Dr. Jonny Bowden, a nutritionist and health author. ‘It’s very alkalizing for the system,’ said the Woodland Hills, Calif.-based Bowden, whose lemonsbooks include “Smart Fat” and “The 150 Healthiest Foods on Earth.” Having a healthy alkaline balance helps fight germs.’”

Now this confused me. How can lemon – an acidic fruit – alkalinize your system?  Body Ecology at http://bodyecology.com/articles/acidic-foods-and-acid-forming-foods-do-you-know-the-difference had exactly what I needed:

“To clear up some of the confusion:

  • Acidic and alkaline describe the nature of food before it is eaten.
  • Acidifying foods and acid-forming foods are the same, making the body more acidic.
  • Alkalizing foods and alkaline-forming foods are the same, making the body more alkaline.”

I know, now you’re wondering what each of these terms mean. So am I…and I thought I knew. I turned to Online Biology Dictionary at http://www.macroevolution.net/biology-dictionary-aaaf.html:

“Acid – a sour-tasting compound that releases hydrogen ions to form a solution with a pH of less than 7, reacts with a base to form a salt, and turns blue litmus red…. An acid solution has a pH of less than 7.”

I used the same dictionary for the definition of alkaline, which referred me to the definition of alkali.

“Any metallic hydroxide other than ammonia that can join with an acid to form a salt (or with an oil to form soap).”

I didn’t find that very helpful so I turned to my old buddy The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/alkali

“a soluble salt obtained from the ashes of plants and consisting largely of potassium or sodium carbonate; broadly:  a substance (as a hydroxide or carbonate of an alkali metal) having marked basic properties”

Okay, that’s a little better, but not much. Let’s try this another way. I perused site after site. What I gleaned from these is that lemons are, indeed, acidic before they are eaten, but the body metabolizes them into alkaline. There was plenty of specific science to explain this, but I didn’t understand half of it and prefer to keep it simple.

Of course, then I wanted to know why I was even bothering to research this at all. LifeHacks at http://www.lifehack.org/articles/lifestyle/11-benefits-lemon-water-you-didnt-know-about.html, a new site for me, made it abundantly clear.

  1. Gives your immune system a boost.
  2. Excellent source of potassium.
  3. Aids digestion.
  4. Cleanses your system.CoffeeCupPopCatalinStock
  5. Freshens your breath.
  6. Keeps your skin blemish-free.
  7. Helps you lose weight.
  8. Reduces inflammation.
  9. Gives you an energy boost.
  10. Helps to cut out caffeine.
  11. Helps fight viral infections.

Now, you do have Chronic Kidney Disease, so be aware that lemons are a high potassium food. Potassium is one of the electrolytes we need to limit. Also, if you are prone to kidney stones, you’ll be very interested to know lemons are full of vitamin C, something you may need to avoid.

So far, it sounds like lemon juice in water upon waking is a good thing if you keep the two caveats above in mind but I think I’ll just check into this a bit more.

I looked in my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, and discovered this succinct explanation of why you want to keep the potassium levels under guard as a CKD patient:What is it

“Potassium is something you need to limit when you have CKD despite the fact that potassium not only dumps waste from your cells but also helps the kidneys, heart and muscles to function normally. Too much potassium can cause irregular heartbeat and even heart attack. This can be the most immediate danger of not limiting your potassium….

Keep in mind that as you age (you already know I’m in my 60s), your kidneys don’t do such a great job of eliminating potassium. So, just by aging, you may have an abundance of potassium. Check your blood tests. 3.5-5 is considered a safe level of potassium. You may have a problem if your blood level of potassium is 5.1-6, and you definitely need to attend to it if it’s above 6.  Speak to your nephrologist (although he or she will probably bring it up before you do).”

If you’re in the normal potassium range on your blood tests as I am, I say go for the lemon juice in water first thing in the morning. Of course, I’m not a doctor and – even if I were – I’m not your doctor, so check with him or her first.

Oh, hopefully by next week, I’ll be able to give you the address for the Edge Podcast I was interviewed on last week. It wasn’t just about CKD, much to my surprise… and maybe that of the Mike G’s (the interviewer), too.SlowItDownCKD 2015 Book Cover (76x113)

Until next week,

Keep living your life!IMG_1398

Deep in the Heart of Texas

Last week I wrote that I’d tell you about our Texas trip this week and that’s just what I’ll do… sort of. We were in San Antonio for the Air Force Basic Training Graduation of a close family friend. I hadn’t wanted to go. The rest of the family was driving 14 hours straight. I thought they were insane.

It turned out I was right about that, but I am glad I went anyway.  The next day, our friend proposed to his girlfriend – who just happened to be our daughter – at The Riverwalk’s Secret Waterfall, Airmen escort and all. THAT was worth the ride. And we got to know his family better, understand them more, and value their company.  As they say in the ad, secret“Priceless.”

There was only one fly in the ointment. While the temperature was manageable for us since we live in Arizona, the humidity was not for the same reason. For my other than U.S. readers (and there are quite a few of them since I have 107,000 readers in 106 countries), Arizona’s usual humidity is low, very low. We do have a three minute rainy season in August (Okay, maybe it’s a teensy bit more than three minutes.) when it rises, but that’s not the norm.

Last week, the humidity in San Antonio, Texas, was between 68% and 72%. Even the air conditioning in the hotel bowed before it.  Our Airman had Air Force logoscheduled the entire weekend for us: The Airman’s run on an open field, late lunch at a restaurant with no available indoor seating, graduation on the parade field, an afternoon on The Riverwalk. There’s more, but you get the idea.  All of it outdoors, all of it in 68% to 72% humidity, all of it uncomfortable as can be.

And, it turns out, all of it not great for a Chronic Kidney Disease patient. Why? Well, that’s the topic of today’s blog. ResearchGate at https://www.researchgate.net/publication/263084331_Climate_change_and_Chronic_Kidney_Disease published a study from the Asian Journal of Pharmaceutical and Clinical Research from February of 2014 (That’s over two years ago, friends.) which included the following in the conclusion:

“Our data suggest that burden of renal diseases may increase as period of hot weather becomes more frequent. This is further aggravated if age advanced and people with chronic diseases like diabetes and hypertension.”DIGITAL_BOOK_THUMBNAIL

That makes sense, but how will this happen exactly? I included this June, 2010, article in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1. Apparently, heat (and humidity) has been an acknowledged threat to our kidneys for longer than we’d thought.

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

By the time this book’s twin, The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, was ready for publication, the (then) NKF-logo_Hori_OBspokesman for The National Kidney Foundation – Dr. Leslie Spry – had this to say about heat and humidity:

“Heat illness occurs when body temperature exceeds a person’s ability to dissipate that heat and is commonly diagnosed when the body temperature approaches 104 degrees Fahrenheit and when humidity is greater than 70 percent. Once the humidity is that high, sweating becomes Digital Cover Part 2 redone - Copyless effective at dispersing body heat, and the core body temperature begins to rise.”

The entire article is at http://www.huffingtonpost.com/leslie-spry-md-facp/heat-illness_b_1727995.html

Oh, so humidity affects sweating and body heat rises.  Humidity greater than 70%. That covers almost the entire time we were in Texas. Well, what’s the connection between heat illness and CKD then?

The CDC offers the following advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

  • Drink more water than usual and don’t wait until you’re thirsty to drink.
  • Check on a friend or neighbor, and have someone do the same for you.
  • Check the local news for health and safety updates regularly.
  • Don’t use the stove or oven to cook——it will make you and your house hotter.
  • Wear loose, lightweight, light-colored clothing.
  • Take cool showers or baths to cool down.
  • Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning.html).”

bottled waterUh-oh, we’re already in trouble. Look at the first suggestion: our fluid intake is restricted to 64 oz. (Mine is, check with your nephrologist for yours.) I know I carefully space out my fluids – which include anything that can melt to a liquid – to cover my entire day. I can’t drink more water than usual and, sometimes – on those rare occasions when I’ve been careless – have to wait until I’m thirsty to drink.

Diabetes is the foremost cause of CKD. I was curious how heat affected blood sugar so I popped over to Information about Diabetes at http://www.informationaboutdiabetes.com/lifestyle/lifestyle/how-heat-and-humidity-may-affect-blood-sugar and found this:

  1. If our body is low on fluids, the kidneys receive less blood flow and work less effectively. This might cause blood glucose concentrations to rise.
  2. If someone’s blood sugar is already running high in the heat, not only will they lose water through sweat but they might urinate more frequently too, depleting their body’s fluids even more.

There’s more at the website if this interests you.

So, pretty much, the way to deal with heat and humidity having an effect on your (and my) CKD is to avoid it. That doesn’t mean you have to move, you know.  Stay in air conditioning as long as you can so your body is not overheated and can better handle this kind of weather. Wearing a hat and cool clothes will also help. I certainly learned the value of wearing cotton this past week. It’s a fabric that breathes.

What is itUntil next week,SlowItDownCKD 2015 Book Cover (76x113)

Keep living your life!

It’s the Funniest Thing…

You want to know about Chronic Kidney Disease brain fog?  Let me tell you about Chronic Kidney Disease brain fog.  I wrote a book about the Book Coverexperiences of the newly diagnosed CKD patient based upon my own experience – What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Nice job on that one, Gail.

Four years later, I published The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 & 2… with neither a topic listed for each blog nor an index. Well, how the heck are you supposed to find the information you’re looking for??? And it’s taken me this long to figure that out. Take it from me, CKD brain fog exists.

So, what is this CKD brain fog of which I speak? According to integrative medicine expert Dr. Isaac Eliaz, when experiencing brain fog:

“…people feel as if there is a thick fog dampening their mind. While the medical and mental health establishments don’t generally recognize brain fog as a condition, it’s a surprisingly common affliction that affects people of all ages. Symptoms include pervasive absentmindedness, muddled thought processes, poor memory recall, difficulty processing information, disorientation, fatigue, and others.”

You can read more at http://www.rodalenews.com/brain-fog.

It was www.naturopathconnect.com (a link that sometimes works, sometimes doesn’t) that offered me my first insight into how our kidneys and brain fog are connected.

bottled water“Make sure your liver and kidneys are not overloaded or congested. When your liver and kidneys are not functioning well, they are less able to clear your system of the multitude of toxins that float around in your bloodstream. When your body is overloaded with toxins, your brain suffers as well….Dehydration may be a key factor in less-than-optimal kidney function, so water is essential to keep the kidneys in tip-top shape.”

Got it – toxins.  Uh, what toxins?  And how do they affect the brain, I wondered.  Back to researching.

Dr. Martin Morrell of healthtap.com offered an explanation. However, this is not an endorsement of him or the site.  I am not a fan of asking online doctors unfamiliar with your particular medical history for advice.

“… if your blood urea increases, which is supposed to be cleared by your kidneys, this ‘poison’ will affect the ability of the brain to work properly.”

Oh, blood urea. Well that explains it. But how can I explain blood urea?  I’ll allow the experts to do that.

http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

“Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly, or that you are dehydrated (have a low body water content).”

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD, the toxins remaining in your body are not eliminated as well and are still in the blood that flows through your brain.  Okay, that’s logical.protein

The more urea remaining in your system, the more sluggish your brain.  It does sound like a perfectly formed ‘if-then’ equation from probability theory. The only difference here is that this is not a theory, but, rather, what we may encounter as CKD patients.

What to do?  What to do?  Obviously, keeping our protein intake low will help.  My renal diet limits me to five ounces of protein a day. I rarely ingest more protein than that. Well, bully for me!

So how else can I alleviate my sometimes brain fog…especially since I’m working on three books at the same time as well as wanting to make some sort of index for the books mentioned above?

I was all over the web on this one and found that besides what I was already doing for my CKD, I could also avoid heavy metal (and I always thought that was a kind of music) exposure, use a blue light, get myself some natural sun light, check my medication side effects and lots more.

Dr. Isaac Eliaz who wrote the RodaleNews article in 2013 suggests several more natural remedies:

  1. Improve your diet and digestion.
  2. Detoxify.
  3. Support cell power.water to cells
  4. Control stress.
  5. Exercise.

I can agree with most of the items on Dr. Eliaz’s list no matter what’s causing the brain fog, but with CKD I’d talk over detoxing and/or taking supplements to support cell power with my nephrologist before actually following that advice.  Some nephrologists are dead (Yikes! Wrong word choice) set against detoxifying while others have a more eclectic approach to gentle detoxifying.

Supplements are a whole other story. There are so many different approaches here that I usually research whichever supplement I’m considering, then bring that research to my nephrologist to talk it over with him. Result: some supplements I agreed weren’t looking so good for me after our talk; others, he agreed were well worth a try.

Bahar Gholipour of Live Science at http://www.livescience.com/45502-foggy-brain-causes.html writes about other possible causes of brain fog. She includes multi-tasking, pregnancy, chemotherapy, menopause, and chronic fatigue syndrome among the causes. If any one of these causes exists in your life, maybe it’s not CKD brain fog you’re experiencing… or maybe it is… or maybe it’s a combination.  No one seems to be certain just what can cause brain fog, although I’m pretty comfortable with the explanations I’ve offered above.

It’s real.  Brain fog could be affecting you, especially if you have CKD.  And from what I’ve read, once you’ve gotten your CKD slowed down as much as possible, the other ‘fixes’ are easy.Kidney Arizona

Here’s a quick reminder about The National Kidney Fund of Arizona’s Path to Wellness screening on Saturday, September 19, 2015 at the Indo American Cultural Center. This consists of free blood and urine testing, which is evaluated onsite to assess for the risk of diabetes, heart and kidney diseases, and chronic disease management education, plus overall health assessment and one-on-one consultation with a physician for the screenees. A follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills is then offered.

Just like last week, one last thing: P2P’s Chronic Illness Buy & Sell page is on Facebook IMG_1398at https://www.facebook.com/groups/P2PBuy.Sell/.  It will be the place to go for anything chronic illness related. My first book is advertised there and both The Book of Blogs: Moderate Stage Chronic Kidney Disease books will be soon, too.

Until next week,

Keep living your life!

On the Sea, On the Sea, On the Beautiful Sea – with apologies to lyricist Harold R. Atteridge

I’ve mentioned a time or two (Oh, okay, much more than that.) we’d been to Vancouver and Alaska recently on what was supposed to have been our over two year delayed honeymoon.  It was soon downgraded to our ‘woebegone vacation.’ I never told you why. IMG_1320

It was so very unfair. Bear has always wanted to take me to see Alaska. He’d been sent there as a young soldier. Obviously, the beauty of the state impressed him. And he’s been talking to me about taking a cruise for the entire time I know him. Having lived on islands my whole life until I moved to Arizona, ferries were enough of ‘cruising’ for me, but my love wanted to go on one so badly. I was the one who wanted to see Vancouver – simply because I’d never been there – so that’s why we sailed from there.

What happened was unexpected…and scary. On our second day in Vancouver, it became clear Bear couldn’t walk and was in pain. We just figured it was some sort of inflammation where he’d had foot surgery two years ago. This had happened before. We got a knee scooter (People in Vancouver thought it was a new form of transportation.), he took pain meds, and we figured we had it covered. So we boarded our cruise ship.

That may have been a mistake. Two days into the cruise, Bear started running a high temperature and was in agony.  Off we went to sick bay as a cruisecruise ship’s infirmary is commonly called. That’s where we discovered he had a dangerous infection called cellulitis that was rapidly taking over his leg. It had already risen from his foot to above his knee.

According to WebMD at http://www.webmd.com/skin-problems-and-treatments/tc/cellulitis-topic-overview

Cellulitis is a common skin infection that happens when bacteria spread through the skin to deeper tissues. Most cases are mild and last several days to a couple of weeks. But cellulitis can sometimes progress to a more serious infection, causing severe illness that affects the whole body (sepsis) or other dangerous problems.

It looked like he was heading toward sepsis. Bear was ordered to stay in bed except for the twice a day he returned to sick bay for IVs (That’s an intravenous drip feed: a needle is inserted into your vein via the arm and whatever is in the bag attached to that needle is dripped into your vein.) of Rocephin.

Here’s when Bear’s cellulitis treatment becomes relevant to Chronic Kidney Disease patients. The generic name for Rocephin is ceftriaxone it may be harmful to the kidneys.  It’s a powerful antibiotic used

to treat many kinds of bacterial infections, including severe or life-threatening forms such as meningitis.

You can read more about it on Drugs.com at http://www.drugs.com/mtm/ceftriaxone-injection.html

The Skeptical Scalpel, a doctor’s blog at http://skepticalscalpel.blogspot.com/2012/10/is-normal-saline-bad-for-kidneys.html, offered some insight about the saline solution Bear was given to rehydrate him. Again, I’m looking at this solely from the CKD patient’s viewpoint:

Is normal saline bad for the kidneys? Yes.Skeptical Scalpel

To be fair, in the particular blog I viewed, it was “renal failure in critically ill ICU patients” that was being referred to in connection with saline drips.

Ketorolac Tromethamine was also being administered. What’s that you ask?

Ketorolac is a nonsteroidal anti-inflammatory drug (NSAID) similar to ibuprofenindomethacinnaproxen, and many others. Ketorolac blocks prostaglandin synthesis. Prostaglandins have many effects in the body including their role in pain and inflammation.

It’s a NSAID, boys and girls, something we – as CKD patients – are warned off.  Thanks are in order to http://www.medicinenet.com/ketorolac_tromethamine-ophthalmic/article.htm for the definition.

All the while, his blood pressure was being monitored. Of course, an x-ray was taken to see if there were a break and two blood tests were administered two days apart.  All good medical practice.blood draw

On the second day of onboard treatment, Augmentin, another antibiotic, was added to Bear’s treatment. This is safe for CKD patients… unless your kidney function is less than 30%. Then the dosage needs to be adjusted. The manufacturers themselves offer this information.

It took four days for Bear to be well enough for the IVs to be discontinued. He was worn out. The cruise was a bust, but he was getting better.

We left the ship with a firm admonition from the doctor to see Bear’s orthopedist (who referred us to our pcp since this was not a surgical problem) as soon as we got home and enough antibiotic to last until we left Alaska. Of course, our doctor had to be on vacation herself just then, so Bear saw someone who didn’t know him except from reading his medical records.

Being one smart man and remembering that the ship’s doctor had said he was worried that the infection may have settled around the hardware that was inserted during his previous foot surgery, Bear figured foot = podiatrist.  It’s a good thing he did. She immediately sent him for an ultrasound for what she feared might be a blood clot at the site of the painful bump on his leg from one of the two times he fell. Not being able to walk can be tricky on a rolling ship.  Luckily, there wasn’t one.Bear's foot

We had to face the obvious. Bear was going to have to quit his dream part-time job in a wood workers’ store. But wait! One door closes and another opens. Now he can work full time in his shop.  He can rest whenever his foot starts to bother him and then just put his shop boots back on and go back to work. He can also not work in the shop if he so chooses… and he doesn’t have to call in sick.

The point of the blog is that while anyone can mysteriously become ill at any time, the rules are different for us as CKD patients. Pay attention to your compromised immune system and what drugs your doctors are trying to give you.  If I don’t recognize the drug, I run it by my wonderful nephrologist who never fails to respond to my texts quickly.

You know, this blog started as publicity for my books.  Now I become so involved with whatever the topic is that I often forget that. I hope you don’t. As much as I’d like to sell you some books, I also want you to know you can borrow them from the Kindle Owners’ Lending Library for free. That’s at Amazon.com. You can also ask the librarian at your local brick and mortar library to order my books.

Book Cover

Until next week,

Keep living your life!IMG_1398

Water, Water Everywhere

11194487_10206480685479477_4614482644786730988_oYesterday was Mother’s Day here in the U.S.  Here’s what I posted on that day:

When I grew up, mothers were all married women. Not anymore! Happy Mother’s Day to the moms who are moms in a lesbian relationship, the dads who are moms in a gay relationship, the single dads who are both mother and father, the moms in straight relationships, the older siblings bringing up their brothers and sisters, the single moms and those who have lost their child. You’re all still mothers and I relish enjoying this day with you.

I hope yours was a very happy one, even if your children are far away like my Nima who is in New York. Nima

This mother (two biological daughters, two step-daughters, two significant others) has been writing about sea sickness remedies, both medical and natural, for the past two weeks.  That got me to thinking about another kind of water and why we need it.

I’ve mentioned that I see a nutritional counselor to help me prevent my pre-diabetes from becoming diabetes. We all know I need 64 oz. of fluid intake a day as a Chronic Kidney Disease patient, but it’s not all water.  There’s my beloved 16 ounces – or two cups – of coffee a day plus any solid that turns to a liquid when melted (think ices) and the liquid in fruits such as watermelon.  By the way, did you know that our bodies are 50-75% water depending upon our health and age?diabetes equipment

Debbie, my nutritional counselor, kept hitting the need to hydrate.  Until she realized I already take this into account daily, she asked me to keep count of the number of eight ounce glass of water I drank each day.  That’s how important she felt it was.  We know that; we’re CKD patients.

But, have you ever wondered why it’s so important that we keep hydrated?  That’s one of those questions that was answered when I was first diagnosed, but – being who I am – I don’t remember the answer.  And that got me to wondering if you did.

The most obvious answer is that we need water so that our metabolism can function at its best. This is important so we have energy and build new cell materials. Let’s explore this a bit more.

The Oxford Dictionary defines catabolism (love that name) as

the breakdown of complex molecules in living organisms to form simpler ones, together with the release of energy; destructive metabolism.

In this case, ‘destructive’ is a positive.  No destruction of complex molecules = no release of energy.  Heaven knows we already have enough problems with energy as CKDers.

I used the Medical-Dictionary at http://medical-dictionary.thefreedictionary.com/anabolism for an explanation of anabolism.

The phase of metabolism in which simple substances are synthesized into the complex materials of living tissue.

So catabolism is the function of metabolism which breaks down complex molecules for energy and anabolism is the function that builds up cell material.metabolism

Oh, almost forgot – metabolism simply means change. How can I remember a college etymology lesson from fifty years ago, but not remember what my nephrologist told me seven years ago????

All right, but why the need to hydrate? While a commercial site, Nestle Waters at http://www.nestle-waters.com/healthy-hydration/water-fonctions-in-human-body (I did wonder about that ‘o’ in fonctions.) lists the five reasons we need water.  Notice number five and remember that toxins need to be eliminated, too.  That’s the job of the kidneys… and they need water to do it.water to cells

  1. Cell life
  2. Chemical and metabolic reactions
  3. Transport of nutrients
  4. Body temperature regulation
  5. Elimination of waste

As I researched, I hit medical sites, sports sites, pregnancy sites, elder care sites, and even pediatric sites.  All included hydration in their how-to-stay-healthy advice.

As CKDers, we know that an excess of sodium, phosphorous, potassium, and protein is not good for us.  Guess what flushes out the excess.  That’s right.  Your kidneys filter it from your blood, it’s converted to urine, and leaves your system.  Of course, you don’t want to overtax your already compromised nephrons by going over your daily limits of each of the above.

We’ll pause for a moment here while you go get a drink of water.

409px-Glass-of-waterRefreshed?  Okay.

Did you know there are different types of water? Many thanks to Consumer Reports for the following chart.

Artesian

Water obtained from a well that taps a confined aquifer, an underground layer of rock or sand that contains water. Example: Fiji Natural Artesian Water.

Distilled

Water that has been boiled and then recondensed from the steam that the boiling produces. Distillation kills microbes and removes minerals, giving water a flat taste. Example: Glacéau Smartwater.

Mineral

Groundwater that naturally contains at least 250 parts per million of dissolved solids. All minerals and other trace elements must be present in the water when it emerges at the source. Example: Calistoga.

P.W.S.

Public water source, also known as municipal water supply, or tap water. Fun fact: Aquafina, one of the top 10 selling domestic brands, used to say “P.W.S.” on its label—but changed that in 2007 under pressure from Corporate Accountability International to make clear that the water came from a public supply and not some pristine mountain spring called P.W.S.

Purified

Water from any source that has been treated to remove chemicals and pathogens according to standards set by the U.S. Pharmacopoeia. Must contain no more than 10 parts per million of dissolved solids. Distillation, deionization, and reverse osmosis are all purification methods. Examples: Aquafina, Dasani. (Note from me: recently, Dasani has started added minerals to their water.)

Sparklingbottled water

Water that contains carbon dioxide at an amount equal to what it contained when it emerged from its source. Carbon dioxide lost during the treatment process may be added back. (Carbonated waters such as soda water and seltzer are considered soft drinks, not bottled waters.) Example: Perrier.

Spring

Water derived from an underground formation from which water flows naturally to the Earth’s surface. Spring water must be collected at the spring or through a borehole tapping the underground formation (aquifer) feeding the spring. Examples: Arrowhead Mountain Spring Water (Nestlé), Evian. (Hmmm, Nestle also has minerals added now.)

I stick to either spring water or osmosis filtered water.  Be wary of any water with minerals added. You don’t really need more of those.

Digital Cover Part 1

 

Book Cover

It’s contest time.  Post a picture of you reading any of my three books in the most unusual place you can think of and win a copy of Part 2The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.  You can post your pictures at https://www.facebook.com/WhatHowearlyCKD which is SlowItDownCKD’s Facebook page.  Make sure the title and your face are clearly visible. Keep it clean and keep them coming!  The contest ends on May 31.  Thank you to inspired reader, Geo De Angelo, for sparking the idea in my mind. I’m eager to see how creative you can get.

Until next week,

Keep living your life!

They’re Not Twins

Kidney ArizonaMarch is National Kidney Month here in the United States.  That makes it an even better time to have yourself screened for Chronic Kidney Disease. 28 million people have it and quite a few of them don’t know it.  Don’t be one of them.  All it takes is a simple blood test and a simple urine test.

Talking about blood and urine tests, I mentioned in passing on one or two of my blogs that your values and the reference range values on your lab tests may differ according to the lab you use, and loads of physical factors such as: being adequately hydrated, having voided your bladder, having gotten enough sleep, even how the specimens were handled.

I was in the unique position of taking these two tests once and then again two weeks later. Had the due date of the tests for each doctor been closer, I might have combined them and had the results of the one set of tests sent to each doctor. But my nephrologist needed his tests two weeks before my appointment, and my primary care physician {pcp} needed hers no less and no more than every three months since she was monitoring my bmpliver for the effect of a medication.

She was checking primarily for my cholesterol levels {which are better than ever and finally all within range, thank you very much!} and included the other tests because she is one thorough doctor. He, my nephrologist, was much more concerned with my kidney function.

The reference range values from the two different labs I used were not twins. For example, Sonora Quest, the lab my nephrologist uses, has the acceptable range for creatinine as 0.60 – 1.40.  But my pcp uses LabCorp. which states that it is 0.57 – 1.00 mg/dL. If you look to the right, you’ll see an older test result using mg/dL.

I wasn’t really sure what mg/dL meant, so I looked it up. According to the Free Dictionary at http://acronyms.thefreedictionary.com/mg%2fdL, this means

Milligrams per Deciliter

That was my reaction, too, so I used the same dictionary for both words used in the definition.  Milligrams means

A unit of mass equal to one thousandth (10-3) of a gram

while deciliter means

100 cubic centimeters

We are talking small here!Book Cover

The results for this test were a little different, too.  On February 10th, it was 1.11, which was not out of range for Sonora Quest.  But two weeks later, it was 1.1 – ever so slightly lower – which was out of range for LabCorp. This is a bit confusing.

Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see if we can shed some light on this. On page 21 {Use the word search if you’re using the digital version of the book.}, I wrote

A higher creatinine result could mean the kidneys were not adequately filtering this element from the blood.

By the way,

Creatinine is a chemical waste product that’s produced by your muscle metabolism and to a smaller extent by eating meat.

Thank you to The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/creatinine/basics/definition/prc-20014534 for this clarification.

All I can say is that seemed like earth shattering information when I was first diagnosed with CKD.  Now that it’s seven years late, it just means I have CKD.  It’s sort of like reiterating I have this slow decline in the deterioration of my kidney function no matter which acceptable range we use.

Another difference in value ranges was BUN.  This is your urea nitrogen. Medline Plus at blood drawhttp://www.nlm.nih.gov/medlineplus/ency/article/003474.htm explains

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.

This could be a ‘Who cares?’  statement except that the BUN is used to measure your kidney health. Sonora Quest’s acceptable range is 8-25 mg/dL, while my LabCorp’s is 8-27. At the first lab, my value was 22 and at the other, two weeks later, it was 17. Both were in range, but let’s say – just for argument’s sake – my value had been 26.  Would that mean I was out of range?  It would at one lab, but not the other.  I think I just answered my own question as to why I need to have my doctor interpret my lab results even though I can read them myself.

Well, what makes these levels go up or down? Thank you WebMD for this simple to understand answer.

If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher. Liver disease or damage can lower your BUN level. A low BUN level can occur normally in the second or third trimester of pregnancy.

Aha!  We know that as CKD patients we are restricted to five ounces of protein a day. Why combine an inability to “remove urea from the blood normally” with an overabundance of protein?

Hopefully, some of the questions you didn’t even know you had were answered today.

Part 2I’m sorry if you missed out on your free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  by being the third buyer during the last part of February. While I’ve used up my freebies for that book, I’m now working on a free day for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 on World Kidney Day, March 12.  Keep watching for more news about this as Amazon and I keep working on it.

Again, if you’d like to join us for the Kidney Walk on April 19 at Chase Stadium in Phoenix, why not go to the Walk’s website at http://kidneywalk.kintera.org/faf/home/default.asp?ievent=1125145 and join our team, Team SlowItDown. We’ll be looking forward to seeing you there.

Until next week,

Keep living your life!

Up and Down…and Up…and Down

I usually base the blog upon what’s happening in my medical life or those of my family members and friends.  I thought I wouldn’t have anything to write about today. But then I got my latest lab results.  Ugh!

eGFR MDRD Non Af Amer >59 mL/min/1.73 47

There’s been some variation in my eGFR for the last few months and it hasn’t all been good.  What’s the eGFR, you ask.  Let’s start with the GFR and use the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 132} for the definition:

Glomerulus-Nephron 300 dpi jpg“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

Wonderful, except we need to know what glomerulus means since the suffix ‘ar’ tells us that glomerular is an adjective or word that describes a noun – a person, place, thing, or idea.  In this case, the noun is glomerulus.   Thank you dictionary.reference.com for the following:

“Also called Malpighian tuft, a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”glomerulus

Yes, yes, I know more definitions are needed.  Back to the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 134 this time):

“Nephrons: The part of the kidney that actually purifies and filters the blood.”

A tubule, as you’ve probably guessed, is a very small tube.  This is when having been an English teacher for decades pays off in my kidney work!

Maybe we should define capillary too, in case you’ve forgotten what it is. This time I used Merriam-Webster.com at MedlinePlus.

“a minute thin-walled vessel of the body; especially: any of the smallest blood vessels connecting arteriole with venules and forming networks throughout the body.”

In other words, they’re the smallest blood vessels in the body.

Alright, we’ve got our vocabulary in place; now why is the eGFR so important? As stated in the definition above, it is used for staging your Chronic Kidney Disease.  Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts.  The higher the stage, the worse your kidney function.stages chart

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist {kidney specialist}. You’ll need a renal {kidney} dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis {artificial cleansing of your blood}. Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.

Many thanks to DaVita.com for refreshing my memory about each stage.

Back to my original concern about the GFR results in my labs.  Why did it fluctuate from 53 in August of last year, to 47 in February of this year, to 52 in May, to 56 in August, and to 47 last week? All the values are within stage 3A and I know it’s only a total fluctuation of six points, but it’s my GFRfluctuation so I want to know.  And that’s what started this whole blog about GFR.

I discovered that different labs may use slightly different calculations to estimate your GFR, but I always go to the same lab, the one in my doctor’s office.  Nope, that’s not my answer.

According to the American Kidney Fund, “…this test may not be accurate if you are younger than 18, pregnant, very overweight or very muscular.”  No, these situations don’t apply to me either.

Maybe I’m going about this all wrong and should look at the formula for arriving at GFR. The National Kidney Disease Education program lists the formula which includes your serum creatinine.  Aha! Maybe that’s the cause of the variation.  First a reminder: creatinine is the chemical waste product of muscle use. {This is a highly simplified definition.}

You’ll find this on your Comprehensive Metabolic Panel Blood Results, should you have your results. The normal values are between 0.57 and 1.00 mg/dL.  Mine were above normal for each test, a sign that I have CKD.  As if I didn’t already know that. These results were also lower each time my GFR was higher.

iPadI researched and research.  My final understanding is that not only can CKD elevate your creatinine, but so can dehydration, diabetes or high blood pressure.  If your creatinine is elevated, the results of the GFR formula will be lowered.  That’s enough information to allow me to rest easy until I see my doctor next week.

Some of this was pretty technical and I couldn’t give you many exact web addresses since my computer is having its own issues today.  You may want to try an online GFR calculator just to see how it works.  You will need your serum creatinine value {serum means blood, so this is not to be confused with the urine creatinine test} to do so.  I like the one at DaVita.com.

Until next week,Book Cover

Keep living your life!

Baby, It’s Hot Outside

I just caught up to the fact that it’s June.  No, it wasn’t the calendar that told me, but the temperature.  We live in Arizona and its hot, dry heat or not.  That means cooling off any way you can. IMG_0584

This weekend, we finally took the three hour round trip drive to visit my friend and her family.  Her five year old daughter proudly showed off the family’s new addition since I’d been there last – a wonderful, cooling swimming pool.  I was tempted, but the 105% temperature kept me inside with the air conditioning.

That’s when I was offered some filtered water.  Did I want ice? I was asked.  I immediately shook my head.  “CKD, no ice, please.”

My friend cocked her head.  Her father had had a kidney transplant so she was well aware of the renal diet.  True, her father was treated in Korea, so there might have been some differences in treatment, but ice?

She asked me why and I immediately knew what I was going to blog about today.

For years, I’ve misunderstood something my nephrologist said.  I heard, “Don’t use ice.”  What he really said was something like, “If you use ice, you need to count the cubes in your fluid intake.”

I’ve spent time since Saturday researching the ice question and found nothing about avoiding ice.  I did find one warning about cold beverages from DaVita at http://www.davita.com/kidney-disease/overview/living-with-ckd/seven-summertime-precautions-for-people-with-kidney-disease/e/4894 : “Be careful of very cold beverages, which can cause stomach cramps.”

The lesson I learned from this misunderstanding of what I thought I heard is to recheck what you think you know every once in a while.  After all, I thought I had the diet down pat.

Hah!  I forgot that I was terrified when I was first diagnosed and thinking I was going to die imminently. I adhered strictly to what I heard and, apparently, adhered just as strictly to what I thought I’d heard.

sun-graphic1Wait a minute… maybe I need not have avoided the heat, either.  I researched that, too.  Just as with ice, I found a general warning about the elderly, but nothing specific to CKD.

““With the elderly, the heat accumulates in their bodies over hours to days. If you have a long heat spell, the elderly person accumulates heat through each of those days because they can’t really eliminate or dissipate the heat,” explains Dr. Crocker. “Sometimes it’s because of a medication, sometimes it’s a lack of mobility, or in some cases the older you get, the less active your sweat glands are, so it becomes harder and harder for you to eliminate heat.”

This is from The Austin Diagnostic Clinic at http://www.adclinic.com/2012/08/hot-summer-days-challenging-dangerous/#.U5X-ZKROUY0.

By the way, National Public Radio (NPR) has a fascinating blog about the term ‘elderly’ at http://www.npr.org/2013/03/12/174124992/an-age-old-problem-who-is-elderly.  While 65 was the accepted age for elderly here in the USA for quite some time, this is now under debate.  I, however, still envision an elderly person as frail and delicate… something I’m not.

But, again, there was nothing specific to CKDers in the quote above.  In thinking about it, I began to wonder if the risk of dehydration from the summer heat is the problem for us.

According to The National Kidney Fund at http://www.kidney.org/atoz/content/kidneysnottowork.cfm

“Kidneys can become damaged if they are not getting good blood flow. This can happen if you become dehydrated or seriously ill.”

Aha!  This was starting to make sense.  WebMD at http://www.webmd.com/fitness-exercise/tc/dehydration-topic-overview explains this for us.

“Usually your body can reabsorb fluid from your blood and other body tissues. But by the time you become severely dehydrated, you no longer have enough fluid in your body to get blood to your organs, and you may go into shock, which is a life-threatening condition.”ice water

Okay, so we know we need to drink fluids, especially in hot water. Our kidneys are already having a hard time cleaning our blood effectively and we are reabsorbing ineffectively cleaned blood prior to this point of dehydration.

But how do we know if we’re becoming dehydrated? What are the symptoms? I turned to my standby, the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/dehydration/basics/symptoms/CON-20030056 for the symptoms of mild dehydration:

  • Dry, sticky mouth
  • Sleepiness or tiredness — children are likely to be less active than usual
  • Thirst
  • Decreased urine output
  • No wet diapers for three hours for infants
  • Few or no tears when crying
  • Dry skin
  • Headache
  • Constipation
  • Dizziness or lightheadedness

And then I laughed.  I experience one or more of those symptoms at one time or another.  The clinic does make the extremely helpful point that the color of your urine is a good indicator of dehydration. If it’s clear or light in color, you’re fine.  If it’s dark, start drinking!  Interestingly enough, having CKD is already a risk factor for dehydration so let’s not make it worse for ourselves.

So how do we prevent dehydration?  What can we do if we can see if starting?

Obviously, drinking more fluids will help. I’m limited to 64 ounces in a day, but I get creative in summer. Sometimes, I will have that half cup of ice cream.  Watermelon magically (hah!) appears on the table.  Now that I realize I don’t have to avoid ice, they too will become part of both the anti-dehydration campaign and the anti-dehydration campaign in our house.watermelon

I’m not sure if this is common knowledge, but dehydration can also cause kidney stones.  If you don’t have the fluid in your body to prevent crystallization, crystallization is more apt to happen.  Kidney stones are,

“Stones caused in the urinary tract and kidney when crystals adhere to each other.  Most of those in the kidneys are made of calcium.”

(Love this author’s style).  That’s from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, p. 133.

Talking about the book, it’s clear that digital outsells print and that in foreign markets, England outsells other countries.  I wonder if it’s the languages.  I’d thought about translations, but how would I be able to edit the texts if I don’t know the languages myself?  I’ve tried online translation, but the results are never quite what I originally wrote in English.

May you stay cool and hydrated.

Until next week,

Keep living your life!Book Cover

A Foggy Day… in Your Brain

Coffee Beans_0I don’t know about you, but I thoroughly enjoy my 16 ounces of coffee a day.  I savor it and draw those two cups out as long as I can.  I relish the taste and adore the aroma.  And, I thought they would cut through what I’ve discovered is called ‘brain fog.’

To be honest, I’d never heard the term before.  Maybe I live too sheltered a life… or maybe I just didn’t realize it had anything to do with me.  After all, I don’t do drugs or drink.  I do get eight hours of sleep a night, follow the renal diet, and exercise just about every day.  So what does brain fog have to do with me or any other renal patient?

You probably know this blog is posted on as many Chronic Kidney Disease Facebook pages as I could find.  These are not for medical advice, but for sharing ideas and information – always with the warning that none of us are doctors.  That’s the same warning I mention in the blog.Book Cover

I receive daily notices of who posted what where.  I noticed a question about brain fog and was surprised at the responses.  The question asked who else suffered this cloudiness of thought and what stage they were in.

Once I understood what brain fog was, I imagined the responses would all mention end stage.  They didn’t.  I saw all stages from 2 through 5 mentioned.  I was grabbed by the fact that no one in stage 1 had responded and that’s when brain fog became the topic of today’s blog.

According to integrative medicine expert Dr. Isaac Eliaz, when experiencing brain fog:

“…people feel as if there is a thick fog dampening their mind. While the medical and mental health establishments don’t generally recognize brain fog as a condition, it’s a surprisingly common affliction that affects people of all ages. Symptoms include pervasive absentmindedness, muddled thought processes, poor memory recall, difficulty processing information, disorientation, fatigue, and others.”

You can read more at http://www.rodalenews.com/brain-fog.brain

Sound familiar?  Maybe that explains why you couldn’t find the tea bags in their usual spot even though they were there.  Or why you didn’t speak with the person you meant to about a certain subject (Yep, me and SlowItDown with a potential community), but just chatted instead.

While this is interesting, what does it have to do with renal disease?  I know there are readers who only want to read about subjects that affect us as sufferers of this disease.  I know because I get a good laugh when they ask what a particular blog has to do with renal disease.  It’s obvious they haven’t read the blog since the blog is ONLY about renal disease, but just commented instead.  But, more importantly, that’s why I write the blog.

So I did what I love to do: researched the topic. Here’s what I found:

www.naturopathconnect.com offered me my first insight into how our kidneys and brain fog are connected.

“Make sure your liver and kidneys are not overloaded or congested. When your liver and kidneys are not functioning well, they are less able to clear your system of the multitude of toxins that float around in your bloodstream. When your body is overloaded with toxins, your brain suffers as well….Dehydration may be a key factor in less-than-optimal kidney function, so water is essential to keep the kidneys in tip-top shape.”

Got it – toxins.  Uh, what toxins?  And how do they affect the brain, I wondered.  Back to researching.blood

Dr. Martin Morrell of healthtap.com offered an explanation. However, this is not an endorsement of him or the site.  I am not a fan of asking online doctors unfamiliar with your particular medical history for advice.

“… if your blood urea increases, which is supposed to be cleared by your kidneys, this ‘poison’ will affect the ability of the brain to work properly.”

Oh, blood urea. Well that explains it. But how can I explain blood urea?  I’ll allow the experts to do that.

http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

“Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly, or that you are dehydrated (have a low body water content).”

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD,  the toxins remaining in your body are not eliminated as well and are still in the blood that flows through your brain.  That’s logical.

blood_test_vials_QAThe more urea remaining in your system, the more sluggish your brain.  It does sound like a perfectly formed ‘if-then’ equation from probability theory. The only difference here is that this is not a theory, but, rather, what we may encounter as CKD patients.

What to do?  What to do?  Obviously, keeping our protein intake low will help.  My renal diet limits me to five ounces of protein a day. I rarely ingest more protein than that. Well, bully for me!  So how else can I alleviate my sometimes brain fog?

I was all over the web on this one and found that besides what I was already doing for my CKD, I could also avoid heavy metal (and I always thought that was a kind of music) exposure, use a blue light, get myself some natural sun light, check my medication side effects and lots more.  This is the stuff of several blogs.

It’s real.  Brain fog could be affecting you, especially if you have CKD.  And from what I’ve read, once you’ve gotten your CKD slowed down as much as possible, the other ‘fixes’ are easy.

Okay, so coffee’s not going to help here but I’ll drink it anyway.SlowItDown business card

I just got the report from my publishers.  Thanks to all of you who brought the book as Christmas, Chanukah, or Kwanzaa presents.  That was a good month for sales which allows me to donate even more books.

SlowItDown is slowly progressing. Interesting choice of words there. We have new educators in New York and Washington, D.C. and – frankly – need your help in finding the communities that need us.

Sweet 16Between birthday parties (Happy Sweet 16, Olivia Vlasity!) and graduations (Congratulates on that and acceptance to U. of A. College of Medicine, Jordan Mudery), and the chance to spend time doing nothing graduationwith Bear, this was almost the perfect weekend for me.  Here’s to many of those for you!

Until next week,

Keep living your life!

Book It!

With the holidays over and more time to think about what I’d like to write, I decided this would be a good time to update you about whatever other books are available that also concern Chronic Kidney Disease.

You know there are many out there, too many to mention here, so I eliminated any book that couldn’t be understood by a lay person (those without specific training in a certain field – in this case, medical) and renal diet books.  You can easily find those for yourself by going to Amazon.com and B&N.com. I also excluded those I found to be dubious… the spelling errors were a dead give-away that these were not professional.

I’m not going to tell you about What Is It And How Did I Get It? Early Stage Chronic Kidney Disease since you already know about it from this blog.  Let’s change that, I will tell you one or two things.  First, the books included in ‘Additional Resources’ (Chapter 13) won’t appear here, as good as they are.Book Cover

And – pay attention – students, be aware that both Campus Book Rentals and Chegg are attempting to rent the book to you for more than it costs to buy it.  The digital edition – when I was teaching college, my students always seemed to prefer the digital edition – is even less expensive.

Don’t forget about The KindleMatchBook program which allows you to buy the digital version at 70% discount if you’ve ever bought the print copy. Gather your classmates: pool your money so you can save. One of you buy the print edition, then the others can get the digital edition at deep discount (I have no idea why, but I love that phrase).

Disclaimer:  I am not a doctor, have never have claimed to be one , AND am not endorsing the following books, simply letting you know they exist. For the most part, the descriptions were written by the author. The ‘Look Inside!’ function only works if you follow the link to Amazon.com – sorry! I have been dreaming about this list, so let’s get it out of my dreams and on the blog:

510smylYevL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Ford, Mathea A., RD (Registered Dietician) Kidney Disease: Common Labs and Medical Terminology: The Patient’s Perspective (Renal Diet HQ IQ Pre-Dialysis Living) (Volume 4)

New to kidney failure? Have no idea what your physician just said about your kidneys? Kidney disease labs and terminology can quite often be a challenge to understand and digest. Did your doctor use the “stages of kidney disease”? Did you physician refer to “eGFR”? What does all this mean for your health and future with kidney disease, lifestyle and nutrition choices. This book is the basic platform for understanding all the common labs and terminology that your doctors and nurses will use. This book with give you and your caregivers the confidence to manage your condition knowing that you have an understanding of all the ins and outs of the nephrology jargon. (Mrs. Mathea seems to have an entire series of books about CKD.)

Hunt, Walter A. Kidney Disease: A Guide for Living. 

When Hunt learned he had kidney disease, he was overwhelmed by the prospect of facing kidney failure. He had so many questions: Why are my kidneys failing? Is there anything I can do to save them? How will I know when my kidneys have failed? What will it feel like? 41nNk5SdqIL._AA160_What treatments are available for me? Is there a cure for kidney failure? The good news, as Hunt found out, is that kidney failure is highly treatable. People with the disease can lead full and productive lives, and Hunt’s readable and empathetic book will help them do just that. It discusses the latest scientific and medical findings about kidney disease, including what kidneys do; the underlying diseases that cause failure; diagnosis, treatment, and prevention; dietary factors; clinical trials; and the future direction of research on kidney failure. Kidney disease is difficult, but as Hunt’s narrative reveals, people living with it can take control of their health and their future. By understanding kidney failure — what causes it, how it may affect their lives, and what treatment options they have — people with the disease can improve their quality of life and achieve the best possible outcome.

51nUIkG8kSL._AA160_Lewis, Dr. Robert. Understanding Chronic Kidney Disease: A guide for the Non-Specialist.

This is meant for primary care physicians, but can be easily understood by the layman. I looked under the covers of this one and was delighted to see that the information we, as patients with CKD, need to know is also what our primary care physicians need to know. (I wrote this description.)

National Kidney Foundation of Southern California. Living Well With Kidney Disease.

The first edition of “Living Well With Kidney Disease” was developed and published by the National Kidney Foundation of Southern California. Based on the handbook “When Your Kidneys Fail” (originally published in 1982), this new and 41jxZoYLGzL._AA160_updated edition provides detailed information specifically intended for people coping with Kidney Disease and other renal failure, as well as their friends and families. The question and answer format provides a clear and manageable guide for those seeking support and answers. Among the topics covered are the principles of kidney function, methods of treatment, transplantation, and financial resources available to patients. With all of the ramifications of kidney failure and the rise of Chronic Kidney Disease and Type 2 Diabetes, there is a growing population of people afflicted with kidney failure. Although it was written with the patient in mind, family members, friends and health care professionals will also find this handbook a valuable resource.

517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Synder, Rich DO (Doctor of Osteopathic Medicine) What You Must Know About Kidney Disease: A Practical Guide to Using Conventional and Complementary Treatments

The book is divided into three parts. Part One provides an overview of the kidneys’ structure and function, as well as common kidney disorders. It also guides you in asking your doctor questions that will help you better understand both status and prognosis. Part Two examines kidney problems and their conventional treatments. Part Three provides an in depth look at the most effective complementary treatments, from lifestyle changes to alternative healing methods. The diagnosis of kidney disease is the first step of an unexpected journey.

*Yes, this is the same Dr. Rich Snyder who interviewed me on his radio show twice since What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published.

It’s always hard to find good books about CKD that non-medical personnel can understand.  I hope this four (and mine!) help you feel more comfortable and knowledgeable about your diagnosis.

Here’s a little hint about your own health.  I’m back to no sweets or desserts and, I hate to admit it, but I’m feeling better.  Don’t you just hate when that happens?sugar

Until next week (when I’ll in in Culver City for a weekend of Landmark),

Keep living your life!

Let The Sun Shine…

Here we are in lovely, warm, sunny Florida.  But you just left lovely, warm, sunny Arizona, you may say and you’d be right.  We’re here to see family and friends, one of whom is over 65 and has dropped over 60 pounds via exercise and diet.  Jo is my inspiration!

I’ve wanted Bear to meet my brothers for a bunch of years now. This is an opportunity for him to meet one of them, Paul Peck, and his gracious wife, Judy.  Come to think of it, I haven’t seen them since Abby’s college graduation.

Then there’s my New York cousin, Nina Peck and her partner, Sandra, who just happened (ha ha) to move five minutes away from my brother.  That’s another one I haven’t seen in a bunch of years.

Of course, I get to bring the book to Florida, too.  Some of the medical departments of the colleges there are following me on Twitter, but I don’t think any clinics or private sector doctors are.  Good, another way for me to spread the word. The Table

Oh, right, hot weather and CKD. The rules for CKD patients in potentially hot weather are the same anywhere in the world.

According to Dr. Leslie Spry, a National Kidney Foundation spokesperson, “Heat illness occurs when body temperature exceeds a person’s ability to dissipate that heat and is commonly diagnosed when the body temperature approaches 104 degrees Fahrenheit and when humidity is greater than 70 percent. Once the humidity is that high, sweating becomes less effective at dispersing body heat, and the core body temperature begins to rise.” The entire article is at: http://www.huffingtonpost.com/leslie-spry-md-facp/heat-illness_b_1727995.html

We don’t worry about humidity in Arizona, but this is Florida.  No disrespect meant, but I clearly remembering telling my mother, Belle Peckolick, that Florida felt like taking a shower and not drying off.  She was living there at the time and just laughed.  She’d been a New Yorker, so the humidity was a higher dose of what she was used to.

Now’s the time to wear the hat you (meaning I) bought for just that purpose, but forgot was in the trunk of the car.  Otherwise, melanoma just might be a possible drawback of a day in the sun.  Melanoma.com tells us,

“Melanoma is the most serious type of skin cancer. It begins in skin cells called melanocytes. Though melanoma is predominantly found on the skin, it can even occur in the eye (uveal melanoma).

Melanocytes are the cells that make melanin, which gives skin its color. Melanin also protects the deeper layers of the skin from the sun’s harmful ultraviolet (UV) rays.

melanomaWhen people spend time in the sunlight, the melanocytes make more melanin and cause the skin to tan. This also happens when skin is exposed to other forms of ultraviolet light (such as in a tanning booth). If the skin receives too much ultraviolet light, the melanocytes may begin to grow abnormally and become cancerous.”

You are not only heating up your body by being out in hot weather, but exposing yourself to the sun’s ultraviolet light. Use that hat to shade some of your body.

DaVita reminds us to use sunscreen with at least 15 spf.  Don’t forget if you’re swimming – which this aqua-phobe won’t be although I’m looking forward to walking on the beach – you need to slather more on after each dip. You can read more of their hot weather tips, some for dialysis patients, at http://www.davita.com/kidney-disease/overview/living-with-ckd/seven-summertime-precautions-for-people-with-kidney-disease/e/4894

You know you need to drink water during hot weather, but is there a difference among waters?  Yes, there is.  As a CKD patient, your fluid intake is probably restricted (mine is 64 oz. which includes coffee, tea, juice, ice cream, sherbet, and Jell-O.  You get the picture: anything liquid or liquid in a frozen or jelled form.)

Mary Ellen Herndon, a renal nutritionist warns us, “Many drinks labeled as water are loaded with sugar and empty calories. Even though these drinks have ‘water’ in their name, drinking them regularly may cause weight gain and may increase your risk of obesity.”  For the rest of the article, go to http://www.kevinmd.com/blog/2012/08/6-tips-choosing-water-drink.html?utm_medium=twitter&utm_source=twitterfeed

According to WebMD at http://www.webmd.com/a-to-z-guides/chronic-kidney-disease-home-treatment, we also need to be careful about exercising during the hot weather.  I don’t mean stop, simply make certain you are not becoming dehydrated.  Stay away from energy drinks!  As an older adult, I’ve become aware that I can dehydrate more easily when I exercise – especially since my kidneys are not working at top capacity.

Don’t be intimidated by the sun.  We can benefit from the sun if we’re cautious about it. Fifteen minutes or so a day of sunshine can elevate your vitamin D naturally.  Wearing a shirt to cover some of your body can help you protect yourself from the ultraviolet rays while you’re indulging in some free vitamin D production.

Be sure to protect your eyes, too.  This is a direct quote from the DaVita site mentioned above: “Sunglasses protect your eyes in the same way that sunscreen protects your skin from harmful sun damage. Your sunglasses should block at least 99% of UVB rays and 50% of UVA rays. Wraparound sunglasses and other styles that completely cover the eyes are best.” This information is good for anyone, chronic kidney disease sufferer or not.wraparound sunglasses

Excuse me while I see if I can interest any of my friends or family into visiting Epcot with  me.

Until next week,

Keep living your life!

Baby, It’s Hot Out There!

With temperatures of 110 degrees and over here this past week, I got to thinking about why – as CKD patients – we’re warned to be extra careful about this weather and, specifically, exercising in this weather.  I wanted to see how this all came together so I hit site after site with the same result: dehydration is the cuprit.  Of course, then I hit site after site to see just why that was.  I can define it and so can you, but there’s always more, isn’t there?

That’s where WebMD ( http://www.webmd.com/fitness-exercise/tc/dehydration-topic-overview) came in.  I thought this article on their website from Healthwise, last updated February 24, 2010, did a really good job of explaining in a common language we can all understand.  It also discusses babies and older people, which are not necessarily my target groups, but can come in handy should you happen to have a baby or older person in your life.

Keep in mind that as a CKD patient, you are limited to 64 oz. of liquid ( or at least, I am)  no matter how much you sweat.  This amount also includes ice cream, milk, coffee, tea, juice, frozen fruit pops, jello – anything that is or once was a liquid.  Let’s not squander this fluid on perspiration; we need to keep it to help our bodies function.

Dehydration –   Topic Overview    

Dehydration occurs when your body loses too much fluid. This can happen when you stop drinking water or lose large amounts of fluid through diarrhea, vomiting, sweating, or exercise. Not drinking enough fluids can cause muscle cramps. You may feel faint. Usually your body can reabsorb fluid from your  blood and other body tissues. But by the time you become
severely dehydrated, you no longer have enough fluid in your body to get blood to your organs, and you may go into shock, which is a life-threatening condition.

Dehydration can occur in anyone of any age, but it is most dangerous for babies, small children, and older adults.

Dehydration in babies and small children

 

Babies and small children have an increased chance of becoming dehydrated because:

  • A greater portion of their bodies is made of  water.
  • Children have a high  metabolic rate, so their bodies use more water.
  • A child’s kidneys do not conserve water as well as an adult’s kidneys.
  • A child’s natural defense system that helps fight infection (immune system) is not fully developed, which increases
    the chance of getting an illness that causes vomiting and diarrhea.
  • Children often will not drink or eat when they are not feeling well.
  • They depend on their caregivers to provide them with food and fluids.
 

Dehydration in older adults

Older adults have an   increased chance of becoming dehydrated because they may:

  • Not drink because they do not feel as thirsty as younger people.
  • Have kidneys that do not work well. [ note from Gail: you don’t have to be older to have kidneys that do not work well.  We have CKD.  Our kidneys do not work well.]
  • Choose not to drink because of the inability to control their bladders (incontinence).
  • Have physical problems or a disease which makes it:
    • Hard to drink or hold a   glass.
    • Painful to get up from a chair.
    • Painful or exhausting to go to the bathroom.
    • Difficult to talk or communicate to someone about their symptoms.
  • Take medicines that increase urine output.
  • Not have enough money to adequately feed themselves.

Watch babies, small children, and older adults [me again: and CKD patients] closely for the early symptoms of dehydration any time they have illnesses that cause cause high fever, vomiting, or diarrhea. The early symptoms of dehydration are:

  • A dry mouth and sticky saliva.
  • Reduced urine output with dark yellow urine.
  • Acting listless or easily irritated.

This afternoon, I explained to my dear neighbor why I couldn’t go walking in the arroya for  awhile and explained to my fiance why I felt so listless and irritated.  Now that I know how dehydration can disrupt my life in ways I could do without, I’m happy to a. know why I feel this way and b. know I can do something about it  – ust like I can do something about keeping dialysis a long time down the pike by watching the changes I’ve made in my life.

So… be vigilant about the heat and dehyration but enjoy the weekend while you do that.

Keep living your life!

Published in: on June 24, 2011 at 6:13 pm  Leave a Comment  

National Kidney Month Continues

To continue the celebration of National Kidney Month, today we visit DaVita’s wonderfully informational site.  Again, I’ve tried to preserve the click throughs.  Just in case your computer didn’t receive today’s blog that way, their address is: www.DaVita.com.  Or, you can check out their discussion forum through the blogroll to the right of the blog. Notice: only the information pertinent to Early Stage Chronic Kidney Disease is included in today’s blog.

March is National Kidney Month

March is National Kidney Month…. DaVita has teamed with The Kidney TRUST, an organization that aims to benefit the estimated 31 million adults living in the United States who have chronic kidney disease (CKD), as well as the 550,000 Americans with end stage renal disease (ESRD) who need dialysis or a kidney transplant, to help raise awareness about kidney disease.

Chronic kidney disease develops when kidneys lose their ability to remove waste and maintain fluid and chemical balances in the body. The severity of chronic kidney disease depends on how well the kidneys filter wastes from the blood.  It can progress quickly or take many years to develop.

More than 31 million adults in the US – one in six – have chronic kidney disease and most of them are not even aware of it. Often there are no symptoms until kidney disease reaches the later stages, including kidney failure.

Risk factors for chronic kidney disease

High-risk populations include those with diabetes, high blood pressure, cardiovascular disease and family history of kidney disease. Eleven percent of the U.S. population has diabetes, the number one cause of kidney disease. One out of three Americans has high blood pressure, the second leading cause of kidney disease.

More than 32 percent of kidney failure patients are African American. Other high-risk groups include HispanicsPacific Islanders, Native Americans and seniors 65 and older.

Who should be screened for chronic kidney disease?

Anyone 18 years old or older with diabetes, high blood pressure, cardiovascular disease or a family history of kidney disease should be screened for kidney disease. If you live in an area that is offering a free screening, plan to attend. If not, visit your doctor and ask that you be screened for chronic kidney disease.

What is involved in a kidney screening?

Because there are often no symptoms of kidney disease, laboratory tests are critical. When you get a screening, a trained technician will draw blood that will be tested for creatinine, a waste product. If kidney function is abnormal, creatinine levels will increase in the blood, due to decreased excretion of creatinine in the urine. Your glomerular filtration rate (GFR) will then be calculated, which factors in age, gender, creatinine and ethnicity. The GFR indicates the person’s stage of chronic kidney disease which provides an evaluation of kidney function.

Treatment for chronic kidney disease

In many cases, kidney failure can be prevented or delayed through early detection and proper treatment of underlying diseases, such as diabetes and high blood pressure to slow additional damage to the kidneys. Also helpful are an eating plan with the right amounts of sodium, fluid and protein.  Additionally, one should exercise and avoiding dehydration. Treating diabetes and high blood pressure will slow additional damage to kidneys.

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It’s Friday.  The weather is beautiful out here and you know, if you have Chronic Kidney Disease, one way to deal with it (while complying with your nephrologist’s instructions after you’ve thoroughly questioned him or her about them) is to:

Keep living your life.