Don’t Know Much about FSGS…

Being on chemotherapy is very tiring, so I stay home a lot and delve into anything that catches my eye, like FSGS. I’ve seen the letters before and had sort of a vague idea of what it might be, but what better time to explore it and whatever it may have to do with Chronic Kidney Disease than now?

Let’s start at the beginning. FSGS is the acronym for focal segmental glomerulosclerosis. Anything look familiar? Maybe the ‘glomerul’ part of glomerulosclerosis? I think we need to know the definition of glomerulosclerosis to be able to answer that question. The National Institutes of Health’s U.S. National Library of Congress’s Medline Plus at https://medlineplus.gov/ency/article/000478.htm defines it this way:

“Focal segmental glomerulosclerosis is scar tissue in the filtering unit of the kidney. This structure is called the glomerulus. The glomeruli serve as filters that help the body get rid of harmful substances. Each kidney has thousands of glomeruli.

‘Focal’ means that some of the glomeruli become scarred. Others remain normal. ‘Segmental’ means that only part of an individual glomerulus is damaged.”

So, we do know what the ‘glomerul’ part of glomerulosclerosis means. It refers to the same filters in the kidneys we’ve been discussing for the past eleven years: the glomeruli. This former English teacher can assure you that ‘o’ is simply a connective between the two parts of the word. ‘Sclerosis’ is a term you may have heard of in relation to the disease of the same name, the one in which the following occurs (according to Encarta Dictionary):

“the hardening and thickening of body tissue as a result of unwarranted growth, degeneration of nerve fibers, or deposition of minerals, especially calcium.”

Wait a minute. When I first started writing about CKD, I approached NephCure Foundation… not being certain what it was, but seeing Neph in its name. They were kind enough to ask me to guest blog for them on 8/21/11. By the way, as of August 15, 2014, NephCure Foundation became NephCure Kidney International. That makes the connection to our kidneys much more clear.

Back to FSGS. The NephCure Kidney International website at https://nephcure.org/ offers us this information:

“How is FSGS Diagnosed?

FSGS is diagnosed with renal biopsy (when doctors examine a tiny portion of the kidney tissue), however, because only some sections of the glomeruli are affected, the biopsy can sometimes be inconclusive.

What are the Symptoms of FSGS?

Many people with FSGS have no symptoms at all.  When symptoms are present the most common include:

Proteinuria – Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands and feet, and abdomen which causes sudden weight gain.

Low Blood Albumin Levels because the kidneys are removing albumin instead of returning it to the blood

High Cholesterol in some cases

High Blood Pressure in some cases and can often be hard to treat

FSGS can also cause abnormal results of creatinine in laboratory tests. Creatinine is measured by taking a blood sample. Everyone has a certain amount of a substance called creatinine floating in his or her blood. This substance is always being produced by healthy muscles and normally the kidneys constantly filter it out and the level of creatinine stays low. But when the filters become damaged, they stop filtering properly and the level of creatinine left in the blood goes up.”

Whoa! Look at all the terms we’ve used again and again in the last eleven years of SlowItDownCKD’s weekly blog: proteinuria, edema, albumin, cholesterol, high blood pressure, and creatinine. This is definitely something that we, as CKD patients, should know about.

Okay. Let’s say you are diagnosed with FSGS. Now what? The National Kidney Organization at https://www.kidney.org/atoz/content/focal was helpful here:

How is FSGS treated?

The type of treatment you get depends on the cause. Everyone is different and your doctor will make a treatment plan that is right for your type of FSGS. Usually, treatments for FSGS include:

  • Corticosteroids (often called “steroids”)
  • Immunosuppressive drugs
  • ACE inhibitors and ARBs
  • Diuretics
  • Diet change

Corticosteroids and immunosuppressive drugs: These medications are used to calm your immune system (your body’s defense system) and stop it from attacking your glomeruli.

ACE inhibitors and ARBs: These are blood pressure medications used to reduce protein loss and control blood pressure.”

Diuretics: These medications help your body get rid of excess fluid and swelling. These can be used to lower your blood pressure too.

Diet changes:  Some diet changes may be needed, such as reducing salt (sodium) and protein in your food choices to lighten the load of wastes on the kidneys.”

I think we need another definition here. Yep, it’s Plasmapheresis. Back to the Encarta Dictionary.

“a process in which blood taken from a patient is treated to extract the cells and corpuscles, which are then added to another fluid and returned to the patient’s body.”

Let’s go back to The NephCure Kidney International website at https://nephcure.org/ for a succinct summary of FSGS Facts.

“More than 5400 patients are diagnosed with FSGS every year, however, this is considered an underestimate because:

  • a limited number of biopsies are performed
  • the number of FSGS cases are rising more than any other cause of Nephrotic Syndrome…

NephCure estimates that there are currently 19,306 people living with ESRD due to FSGS…, in part because it is the most common cause of steroid resistant Nephrotic Syndrome in children,… and it is the second leading cause of kidney failure in children…

NephCure estimates that people of African ancestry are at a five times higher diagnosis rate of FSGS…

About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation…

Approximately 1,000 FSGS patients a year receive kidney transplants… however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40% of patients….”

As prevalent and serious as this sounds, please remember that FSGS is a rare kidney disease. Knowing what we now know just may help you keep your eyes open for it.

Until next week,

Keep living your life!

Bulking Up

While I make sure to state that I’m not a doctor, I’m not always certain my readers get that. This is why I was so glad that a reader asked me a question about her doctor’s advice, prefacing her question by stating that she knows I’m not a doctor. I feel better.

Her question? It’s about fiber and Chronic Kidney Disease. But first, let’s find out exactly what fiber is. According to Harvard’s T. H. Chan School of Public Health at https://www.hsph.harvard.edu/nutritionsource/carbohydrates/fiber/,

Fiber comes in two varieties, both beneficial to health:

  • Soluble fiber, which dissolves in water, can help lower glucose levels as well as help lower blood cholesterol. Foods with soluble fiber include oatmeal, nuts, beans, lentils, apples and blueberries.
  • Insoluble fiber, which does not dissolve in water, can help food move through your digestive system, promoting regularity and helping prevent constipation. Foods with insoluble fibers include wheat, whole wheat bread, whole grain couscous, brown rice, legumes, carrots, cucumbers and tomatoes.

The best sources of fiber are whole grain foods, fresh fruits and vegetables, legumes, and nuts.”

We all know people need fiber, but do you know why? I found the answer stated the most succinctly on Verywell Fit’s site at https://www.verywellfit.com/all-about-fiber-2242215.

“Besides reducing the glycemic effect of meals and contributing to colon health, there is evidence that fiber may benefit us in other ways. It seems to help lower cholesterol and triglycerides, and also may help to prevent:

  • Ulcers, particularly in the beginning of the small intestine (duodenal ulcers)
  • Diabetes
  • Heart Disease
  • Cancer”

As a diabetic, I understand why I need fiber, but what about as a CKD patient? DaVita at https://www.davita.com/diet-nutrition/articles/basics/fiber-in-the-kidney-diet has that one covered:

“Adequate fiber in the kidney diet can be beneficial to people with chronic kidney disease (CKD) because it:

  • Keeps GI (gastrointestinal) function healthy
  • Adds bulk to stool to prevent constipation
  • Prevents diverticulosis (pockets inside the colon)
  • Helps increase water in stool for easier bowel movements
  • Promotes regularity
  • Prevents hemorrhoids
  • Helps control blood sugar and cholesterol”

Hmmm, this is very similar to reasons why everyone – CKD or not – should pay attention to fiber. But, take a look at this list of high fiber foods from the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/high-fiber-foods/art-20050948:

Fruits                                              Serving size              

Raspberries 1 cup 8.0
Pear 1 medium 5.5
Apple, with skin 1 medium 4.5
Banana 1 medium 3.0
Orange 1 medium 3.0
Strawberries 1 cup 3.0

 

Vegetables Serving size Total fiber (grams)*
Green peas, boiled 1 cup 9.0
Broccoli, boiled 1 cup chopped 5.0
Turnip greens, boiled 1 cup 5.0
Brussels sprouts, boiled 1 cup 4.0
Potato, with skin, baked 1 medium 4.0
Sweet corn, boiled 1 cup 3.5
Cauliflower, raw 1 cup chopped 2.0
Carrot, raw 1 medium 1.5

 

Grains Serving size Total fiber (grams)*
Spaghetti, whole-wheat, cooked 1 cup 6.0
Barley, pearled, cooked 1 cup 6.0
Bran flakes 3/4 cup 5.5
Quinoa, cooked 1 cup 5.0
Oat bran muffin 1 medium 5.0
Oatmeal, instant, cooked 1 cup 5.0
Popcorn, air-popped 3 cups 3.5
Brown rice, cooked 1 cup 3.5
Bread, whole-wheat 1 slice 2.0
Bread, rye 1 slice 2.0

 

Legumes, nuts and seeds Serving size Total fiber (grams)*
Split peas, boiled 1 cup 16.0
Lentils, boiled 1 cup 15.5
Black beans, boiled 1 cup 15.0
Baked beans, canned 1 cup 10.0
Chia seeds 1 ounce 10.0
Almonds 1 ounce (23 nuts) 3.5
Pistachios 1 ounce (49 nuts) 3.0
Sunflower kernels 1 ounce 3.0

*Rounded to nearest 0.5 gram.

Source: USDA National Nutrient Database for Standard Reference, Legacy Release

Looks delicious, doesn’t it. So what’s the problem? Well, CKD patients are restricted in their diets… and even the permissible foods are restricted as far as amounts we can eat. It all depends upon our most current lab results. Do we need less potassium? Then we need to eat even less potassium rich food. The same is true for all the electrolytes. That means our diets may not contain enough fiber.

CKD is an inflammatory disease. Fiber can lower inflammation. So what’s a CKD patient to do?

My reader was recommended supplements by her doctor. One was Solfi Green, something new to me.

I went to MIMS in the Philippines (while a new site to me, they self-describe as “Asia’s one-stop resource for medical news, clinical reference and education”)  at https://www.mims.com/philippines/drug/info/solfi%20green?type=full  for the ingredients and found this:

Ingredients: Fructose, Mixed Fruit Powder, Mixed Vegetable Powder, Soluble Dietary Fiber, Physllium (sic) Husk, Oat Fiber, Wheat Fiber, Citric Acid, Wheat Grass, Alfalfa, Rooibos Extract, Contains Permitted Food Conditioner.”

Wait a minute, Psyllium Husk? I clearly remember writing that this can cause inflammation of the gastrointestinal tract. We need to decrease, not increase inflammation as CKD patients. I would steer clear of this.

Would my reader need to steer clear if she were a dialysis or transplant patient? Drugs.com at https://www.drugs.com/drug-interactions/psyllium.html  doesn’t seem to think any specific dosage reduction is necessary, but they also don’t mention it can cause inflammation or that it is high in potassium. Dialysis patients, beware. If you’re a transplant, you simply need to watch your labs as you would anyway. Just keep in mind psyllium husk can be both an inflammatory and laxative.

Another supplement suggested to my reader is C-lium fiber. I went directly to their website at http://c-liumfibre.com/faq/index.html#Q15  and found this warning in their FAQ:

“If you have rectal bleeding, history of intestinal blockage, difficulty swallowing, diabetes mellitus, heart disease, hypertension, kidney disease, or if you are on a low-sugar or low-sodium diet, contact your doctor before taking C-Lium Fibre.”

Obviously, my reader has gone to her doctor since these two supplements were prescribed by her doctor. I have to make a confession here. When something is prescribed for me, I research it. If I don’t like what I find, I speak with my doctor. If she can explain in more detail or tell me something that is not in my research which I should be aware of to make an informed decision and it’s all positive, I go with the prescription. If not, well….

Of course, you have to make your own decision, just as I do. Here’s hoping this has helped my reader.

Until next week,

Keep living your life!

A Different Kind of Fatigue

Busy with the holidays? Chanukah has passed, but we still have Christmas, Kwanzaa, and the New Year coming up. Feeling like you’re just too tired to deal with them? Maybe even fatigued? What’s the difference, you ask. Let’s go to Reuters at https://www.reuters.com/article/us-fatigued-tired-s-idUSCOL75594120070207 for the answer:

“’People who are tired,’ Olson [Dr. Karin Olson, with the faculty of nursing at the University of Alberta] explained, ‘still have a fair bit of energy but are apt to feel forgetful and impatient and experience muscle weakness following work, which is often alleviated by rest.

People who are fatigued, on the other hand, experience difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, and increased sensitivity to light. They also may skip social engagements once viewed as important to them.’”

Got it. When I was describing how tired I was to another caretaker, her suggestion was to have my adrenals checked. Hmmm, what does that have to do with Chronic Kidney Disease I wondered. Let’s find out.

First of all, what and where are the adrenals? As I reported in SlowItDownCKD 2016,

“According to Reference.com, a new site for me at https://www.reference.com/science/function-adrenal-gland-72cba864e66d8278:

“Adrenal glands are triangular-shaped, measure approximately 1.5 inches high and 3 inches long and are composed of two parts, according to Johns Hopkins Medicine. The outer part is the adrenal cortex, which creates cortisol, aldosterone and androgen hormones. The second part is the adrenal medulla, which creates noradrenaline and adrenaline.

Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body. Aldosterone helps regulate sodium and potassium levels, blood volume and blood pressure. Androgen hormones are steroid hormones that are converted to female or male hormones in other parts of the body.

Noradrenaline helps regulate blood pressure, increasing it during times of stress, notes Endocrineweb. Adrenaline is often associated with the adrenal glands, and it increases the heart rate and blood flow to the muscles and the brain.”

Okay then, is adrenal fatigue exactly what it sounds like? According to Dr. James L. Wilson at http://adrenalfatigue.org/what-is-adrenal-fatigue/:

“Adrenal fatigue is a collection of signs and symptoms, known as a syndrome, that results when the adrenal glands function below the necessary level. Most commonly associated with intense or prolonged stress, it can also arise during or after acute or chronic infections, especially respiratory infections such as influenza, bronchitis or pneumonia. As the name suggests, its paramount symptom is fatigue that is not relieved by sleep but it is not a readily identifiable entity like measles or a growth on the end of your finger.

You may look and act relatively normal with adrenal fatigue and may not have any obvious signs of physical illness, yet you live with a general sense of unwellness, tiredness or ‘gray’ feelings. People experiencing adrenal fatigue often have to use coffee, colas and other stimulants to get going in the morning and to prop themselves up during the day.”

I still wanted to know what the connection to CKD was. LiveStrong at https://www.livestrong.com/article/139350-adrenal-glands-kidneys/ had the following to say about the connection:

“Blood Pressure

The adrenals and kidneys also work together to regulate blood pressure. The kidneys make renin, which is a chemical messenger to the adrenals. The renin put out by the kidneys signals the adrenals to make three hormones: angiotensin I, angiotensin II and aldosterone. These hormones regulate fluid volumes, vascular tension and sodium levels, all of which affect blood pressure.

Prednisone

Many kidney patients take prednisone to minimize the amount of protein spilled into the urine by the kidneys. Prednisone also has a powerful effect on the adrenal glands.

Prednisone acts as a corticosteroid, just like the ones produced by the adrenals. When patients take prednisone, the adrenals cease producing corticosteroids. When patients stop taking prednisone, they gradually taper the dosage down to give the adrenal glands the opportunity to ‘wake up’ and start producing corticosteroids again”.

I don’t take prednisone and my blood pressure is under control via medication. Where does this leave me… or you if you’re in the same situation?

I went to WebMD at https://www.webmd.com/a-to-z-guides/adrenal-fatigue-is-it-real#1 for more information.

“Your body’s immune system responds by slowing down when you’re under stress. Your adrenal glands, which are small organs above your kidneys, respond to stress by releasing hormones like cortisol. They regulate your blood pressure and how your heart works.

According to the theory, if you have long-term stress (like the death of a family member or a serious illness), your adrenal glands can’t continuously produce the extra cortisol you need to feel good. So adrenal fatigue sets in.”

This makes sense to me, although adrenal fatigue is not accepted by the Endocrine Society as a diagnose and there are warnings that accepting it as one may mask another problem (read disease) with the same symptoms. I am a caretaker as well as a CKD patient. I am under constant stress even when I’m sleeping. You’ve heard of sleeping with one eye open? I sleep with one ear open, but I do sleep so I can rule out tiredness.

While writing this blog has helped me understand what adrenal fatigue is and how it might affect me, I’m still going to keep my cardiology appointment to explore why my blood pressure is often ten points higher in one arm than another. That’s also a possible heart problem. Maybe adrenal fatigue is affecting how my heart is working … or maybe it’s a blockage somewhere. Why take a chance?

In the meantime, I intend to partake of as many of those holiday party invitations as I can. I can always come home early if I have to or I can rest before they start. Here’s hoping you do the same whether or not you think you have adrenal fatigue.

Oh, there’s still plenty of time to order any of my books on Amazon.com or B&N.com in time for the remaining holidays. There are links to the right of the blog for the kidney books. Click on these links for the fiction: Portal in Time and Sort of Dark Places.

Until next week,

Keep living your life!

Something New and Entirely Different

I sit here trying to write this week’s blog and being interrupted every five minutes by a long involved commentary about one thing or another. Why do I tolerate it? Because it’s Bear, my Bear, my husband who is interrupting. Why not just ask him not to, you say. Well, it’s involved. Basically, it’s because he has Alzheimer’s, doesn’t know how long winded he’s being, and feels terribly insulted when I ask him not to interrupt so I can write.

Sometimes, we can have a conversation without the interruptions and without the involved commentary. Obviously, not right now, but during one of these conversations, I explained to him that I had been asked to write about his Alzheimer’s but felt I needed to preserve his privacy. This good man blew that up. He said something to the effect that if it’s going to help even one person to know what he experiences, what I experience, with this disease, then I was obliged to write about it. His privacy wasn’t more important than that.

Now you have just an inkling of why I love him… and I do, Alzheimer’s or not. Since this is my kidney disease blog, it would make sense to look for any connections between Alzheimer’s and kidney disease. If they exist, that is.

I was not happy to find the following on The National Kidney Foundation’s page at https://www.kidney.org/news/ekidney/august08/Dementia_august08

“People with albuminuria were about 50% more likely to have dementia than people without albuminuria, Dr. Joshua I. Barzilay, at Emory University School of Medicine in Atlanta, Georgia, and his research team report. The association between the two conditions was still strong after controlling for age, education and risk factors, such as high blood pressure, diabetes, smoking, and cholesterol levels. There was a weaker relationship between albuminuria and mild cognitive impairment.”

By now it’s common knowledge to my readers that diabetes is the foremost cause of Chronic Kidney Disease with high blood pressure (hypertension) being the second.

How about some reminders right about now?

The American Diabetes Association at http://www.diabetes.org/diabetes-basics/common-terms/?loc defines the most common type of diabetes in the following manner:

“diabetes mellitus (MELL-ih-tus)
a condition characterized by hyperglycemia resulting from the body’s inability to use blood glucose for energy. In Type 1 diabetes, the pancreas no longer makes insulin and therefore blood glucose cannot enter the cells to be used for energy. In Type 2 diabetes, either the pancreas does not make enough insulin or the body is unable to use insulin correctly.”

As for high blood pressure, also known as hypertension, The National Library of Medicine PubMed Health was able to help us out:

“It happens when the force of the blood pumping through your arteries is too strong. When your heart beats, it pushes blood through your arteries to the rest of your body. When the blood pushes harder against the walls of your arteries, your blood pressure goes up.”

Keep this in mind for later. Here’s the definition of albumin from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

Albumin: Water soluble protein in the blood.

As mentioned in SlowItDownCKD 2013, “according to the physicians’ journal BMJ: ‘albuminuria [is] leakage of large amounts of the protein albumin into the urine.’”

Many of us with CKD have albuminuria at one time or another. Does that mean that 50% of us are going to develop dementia? No, not at all. According to the National Kidney Foundation, that 50% of us with albuminuria are MORE LIKELY to develop dementia, not GOING TO.

I get it. By now, most of you are probably asking what Alzheimer’s has to do with dementia. I popped right over to the Alzheimer’s Association’s (my new best friend) website at https://www.alz.org/alzheimers-dementia/what-is-alzheimers  for an explanation.

“Alzheimer’s is a type of dementia that causes problems with memory, thinking and behavior. Symptoms usually develop slowly and get worse over time, becoming severe enough to interfere with daily tasks.”

I’ll bet you want a definition of dementia now. Let’s go to Healthline.com at https://www.healthline.com/health/dementia for one:

“Dementia is a decline in cognitive function. To be considered dementia, mental impairment must affect at least two brain functions. Dementia may affect:

  • memory
  • thinking
  • language
  • judgment
  • behavior”

It’s not surprising that the two definitions look so much alike. Alzheimer’s is one of the ten kinds of dementia that I know about. Different websites have different numbers for how many different kinds of dementia there are. I used the information from MedicineNet at https://www.medicinenet.com/dementia/article.htm#what_are_alzheimers_vascular_and_frontotemporal_dementia

Did you keep the definition of albumin in mind? The key word in that is protein… and that’s where the connection between Alzheimer’s and CKD lies. The information is from an unusual source for me to use, Science Magazine at https://www.sciencemag.org/news/2018/01/alzheimer-s-protein-may-spread-infection-human-brain-scans-suggest:

 “Tau is one of two proteins—along with β-amyloid—that form unusual clumps in the brains of people with Alzheimer’s disease. Scientists have long debated which is most important to the condition and, thus, the best target for intervention. Tau deposits are found inside neurons, where they are thought to inhibit or kill them, whereas β-amyloid forms plaques outside brain cells.”

I realize this is getting very technical and may concentrate on particular elements of this connection in future blogs, but right now, I’d like to remind you that the National Kidney Fund is hosting a webinar “Eating healthy with diabetes and kidney disease” in recognition of National Diabetes Awareness Month on Wednesday, November 28, 2018 from 1:00 – 2:00 p.m. EST.

Again, diabetes… the number one cause of Chronic Kidney Disease. Read more about CKD, diabetes, and hypertension (as well as many other topics) in the SlowItDownCKD series and What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. All eight books are available in print and digital on Amazon.com and B & N.com.

Did you know that the first day of Chanukah is December 3rd? We start celebrating Chanukah the night before the first day and celebrate for eight nights… and there are eight books. What a coincidence! (Just planting a seed here, folks.)

Until next week,

Keep living your life!

How Does That Work Again?

I’ve had so many questions lately about how clinical trials work that when Antidote asked me if I’d consider including their infograph in a blog, I jumped at the chance. There’s even more information about clinical trials at https://www.antidote.me/what-are-clinical-trial-phases.

I’ve written about Antidote before… and I’ve written about clinical trials before. It seems more and more people are becoming interested in the process for a multitude of diseases, not only Chronic Kidney Disease.

As a newly diagnosed diabetes patient, I’ve noticed clinical trials for diabetes. A family member has Alzheimer’s; his neurologist keeps an eye out for clinical trials for him. Whatever your disease is, you can search for clinical trials.

While this is not everyone’s cup of tea, it is a chance to help others who may develop the same diseases in the future. Who knows, maybe the new treatment will be FDA approved during your own lifetime and help you with your own disease.

In case you are one of those people who have always wondered just what the FDA is, their website is https://www.fda.gov. That’s right: it’s a government site which is part of the U.S. Health and Human Services. What’s that? You’d like a more precise definition?

No problem. This is from the United States of American Government website at https://www.usa.gov/federal-agencies/food-and-drug-administration and offers basic information about the FDA.

Food and Drug Administration

The Food and Drug Administration (FDA) is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation. The FDA also provides accurate, science-based health information to the public.

                                                                                                                                                      Agency Details

Acronym: FDA

Website: Food and Drug Administration (FDA)

Contact: Contact the Food and Drug Administration

 Report a Problem with a Product

Main Address: 10903 New Hampshire Ave.
Silver Spring, MD 20993

Toll Free: 1-888-INFO-FDA (1-888-463-6332)

Forms: Food and Drug Administration Forms

Government branch: Executive Department Sub-Office/Agency/Bureau

By the way, they are also responsible for both recalls and safety alerts for the treatments they’ve approved.

In the infograph above, you’ll notice, “Sometimes, only healthy volunteers participate.” in Phase 1. Should you decide to apply for a clinical trial, you need to keep this in mind to save yourself a bit of heartache. I firmly believe in paying back for the wonderful things in my life and have applied for several clinical trials for other diseases in an effort to do so. I must have missed the small print because I was rejected for having CKD.

I wanted to help eradicate or ameliorate whatever the disease was. Sometimes it was a disease that was ravaging a loved one. It was just a little bit of a heartbreak not to be able to do so.

As for Phase 2, I went to the blog’s site at gailraegarwood.wordpress.com to use the antidote widget at the bottom of the right side of the page. It’s the turquoise one. You can’t miss it. Face Palm! You can also go directly to www.antidote.me to search for clinical trials.

Why Antidote? It’s simply an easier way to find a clinical trial. This is from SlowItDownCKD 2017:

“Antidote Match™

Matching patients to trials in a completely new way
Antidote Match is the world’s smartest clinical trial matching tool, allowing patients to match to trials just by answering a few questions about their health.

Putting technology to work
We have taken on the massive job of structuring all publicly available clinical trial eligibility criteria so that it is machine-readable and searchable.

This means that for the first time, through a machine-learning algorithm that dynamically selects questions, patients can answer just a few questions to search through thousands of trials within a given therapeutic area in seconds and find one that’s right for them.

Patients receive trial information that is specific to their condition with clear contact information to get in touch with researchers.

Reaching patients where they are
Even the smartest search tool is only as good as the number of people who use it, so we’ve made our search tool available free of charge to patient communities, advocacy groups, and health portals. We’re proud to power clinical trial search on more than a hundred of these sites, reaching millions of patients per month where they are already looking for health information.

Translating scientific jargon
Our platform pulls information on all the trials listed on clinicaltrials.gov and presents it into a simple, patient-friendly design.

You (Gail here: this point is addressed to the ones conducting the clinical trial) then have the option to augment that content through our free tool, Antidote Bridge™, to include the details that are most important to patients – things like number of overnights, compensation, and procedures used. This additional information helps close the information gap between patients and researchers, which ultimately yields greater engagement with patients.

Here’s how Antidote Match works
1. Visit search engine → Patients visit either our website or one of the sites that host our search.
2. Enter condition → They enter the condition in which they’re interested, and begin answering the questions as they appear
3. Answer questions → As more questions are answered, the number of clinical trial matches reduces
4. Get in touch: When they’re ready, patients review their matches and can get in touch with the researchers running each study directly through our tool

Try it from the blog roll. I did. I was going to include my results, but realized they wouldn’t be helpful since my address, age, sex, diseases, and conditions may be different from everyone else’s. One caveat: search for Chronic Renal Insufficiency or Chronic Renal Failure (whichever applies to you) rather than Chronic Kidney Disease.”

Before I sign off, this came in from the American Association of Kidney Patients:

Please join us on Tuesday, October 9, 2018 at 1 p.m. ET for an educational webinar on Making the Perfect Team: Working with Your Dialysis Technician in partnership with National Association of Nephrology Technicians/Technologists (NANT).  Keep in mind that’s tomorrow. Hit this link if you’d like to register https://register.gotowebinar.com/register/7744206034004582403

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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Something’s Fishy Here

I saw this headline the other day: Another Nail in the Coffin for Fish Oil Supplements. When I read the article, I realized it was referring to fish oil supplements for heart problems. You can read it for yourself at  https://jamanetwork.com/journals/jama/fullarticle/2679051. By the way, JAMA is the Journal of the American Medical Association.

But then I wondered why I’ve been taking it all these years since I don’t have cardiology problems.  Hmmm, I do have osteoarthritis and can’t take NSAIDS. In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, NSAIDS are explained this way:

“Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve, or naproxen usually used for arthritis or pain management, can worsen kidney disease, sometimes irreversibly.”

Okay, so I don’t take NSAIDS or fish oil supplements for heart problems, but I do take fish oil supplements for osteoarthritis. Well, that’s good since my favored medical food for osteoarthritis – Limbrel – is still in recall by the FDA for possibly causing liver problems. Who wants both liver and kidney problems? Not me.

Anyhoo (as I’ve seen it written), that got me to thinking about osteoarthritis. This is from SlowItDownCKD 2016:

“According to The U.S. National Library of Medicine at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024677/:

‘Arthritis is a general term for conditions that affect the joints and surrounding tissues. Joints are places in the body where bones come together, such as the kneeswristsfingers, toes, and hips. The two most common types of arthritis are osteoarthritis and rheumatoid arthritis.”

I’ve since discovered there’s also psoriatic arthritis. All of these are inflammatory diseases. This is from this week’s newly published SlowItDownCKD 2017 (How about a review on Amazon.com or B&N.com as long as I’ve mentioned the book?):

“Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease.”

Bingo! I take the fish oil supplements for inflammation. Before I forget, inflammation is the topic of one blog or another – and usually several – in each of the books in the SlowItDownCKD series. Wikipedia’s definition helps to explain why:

“Inflammation is part of the complex biological response of body tissues to harmful stimuli, such as pathogens, damaged cells, or irritants, and is a protective response involving immune cells, blood vessels, and molecular mediators. The function of inflammation is to eliminate the initial cause of cell injury, clear out necrotic cells and tissues damaged from the original insult and the inflammatory process, and initiate tissue repair.”

Keep in mind, though, that anyone can edit a Wikipedia entry.

Since I’m writing about inflammation and CKD, I was thrilled to find this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“By the way, are you taking Omega 3 {Fish oil} supplements?  There’s a theory it helps retard the progress of CKD.”

Aha! Now to the heart… I mean the kidneys… of the matter. How do Omega 3 supplements retard the progress of CKD?

Let’s lead off our answer with this quote from the #NephMadness 2017: Nutrition Region article in the March issue of The American Journal of Kidney Diseases at https://ajkdblog.org/2017/03/07/nephmadness-2017-nutrition-region/

“There is some evidence that omega-6 is proinflammatory and omega-3 are anti-inflammatory.”

Of course there’s much more to the article, but it gets pretty technical.

“What’s omega-6?” you ask. I went to my long term buddy The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/heart-disease/expert-answers/omega-6/faq-20058172 for some help in explaining.

“Your body needs fatty acids and can make all but two of them, which is why they are called essential fatty acids. Linoleic and linolenic acids are derived from foods containing omega-6 and omega-3 fatty acids, respectively, which serve different functions in the body. Some of these fatty acids appear to cause inflammation, but others seem to have anti-inflammatory properties.”

But we’re getting far afield from the anti-inflammatory properties of omega-3 that can help retard the progress of CKD. I decided to see what the natural health community had to say about this and discovered the following in Healthy Fellow at http://www.healthyfellow.com/742/fish-oil-and-kidney-health/ :

“However, based on what we know now, it seems that fish oil supports both cardiovascular and renal health in part by moderating blood pressure, heart rate and triglycerides in at-risk patients.”

This was back in 2011, but look at all it tells us. We know that hypertension is the number two cause of CKD. Moderating our blood pressure will (hopefully) slow down the progression of the decline of our kidney function. Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/High_Blood_Pressure_and_Kidney_Disease.php explains this succinctly:

“High blood pressure makes your heart work harder and, over time, can damage blood vessels throughout your body. If the blood vessels in your kidneys are damaged, they may stop removing wastes and extra fluid from your body. The extra fluid in your blood vessels may then raise blood pressure even more. It’s a dangerous cycle.”

And heart rate? The conclusion of a study published in the Journal of Nephrology reads:

“Heart rate is an independent age-dependent effect modifier for progression to kidney failure in CKD patients.”

You can read the entire study at https://www.researchgate.net/publication/232714804_Heart_rate_age_and_the_risk_of_progression_to_kidney_failure_in_patients_with_CKD.

Then there are triglycerides. I included this information from the American Kidney Fund in SlowItDownCKD 2012.

“Your triglycerides are also important. People with high triglycerides are more at risk for kidney disease, heart disease and stroke.”

I am convinced. I will be one of those who continues taking my fish oil supplements to get in that omega-3 which is going to help me with inflammation which – in turn – will help me slow down the progression in the decline of my kidney function. How about you?

We’re going to do this a little differently this time. To celebrate the publication of SlowItDownCKD 2017, the first person who hasn’t won a book giveaway yet and can correctly tell me if my new grandchild is a boy or a girl will win a copy of Portal in Time. I hope you like time travel romances.

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!

There’s Always the Exception

And this is one of them. We all know I don’t write about dialysis, but I’ve been receiving bunches of emails lately asking if I would consider including this product, that book, or the other social media kidney disease awareness item. My response is usually thank you, but I don’t allow advertising or product promotion on the blog. When Dr. Bruce Greenfield, a Los Angeles nephrologist with 37 years experience, sent me a link to his dialysis rap with the following message, I was forced to think twice: “My goal is to reach every dialysis patient in America, in part to make people more informed, in part to shed a little light into their world in a fun way, and of course- to make them smile!”

But why? Are smiles and laughter necessary in the treatment of illness? According to Dr. Jordan Knox, a resident in family medicine, they are. This is how he summarized the need for physicians to use humor in his essay on KevinMD.com at http://www.kevinmd.com/blog/2017/10/theres-place-humor-medicine.html last Friday: “Patch Adams, MD is one of the best-known physicians to use humor in healing. He focuses more on silliness to reach pure joy, nourishing the soul as much as the body. There is something about the contrast, when silliness uproots the expectation of seriousness, that is more powerful than pure humor alone. I think that’s why humor can be so powerful in the doctor’s office; because the expectation is all business, seriousness, and authority. Humor can break down those rigid roles of “patient” and “doctor,” or “team leader” and “team member.” It can level the playing field and align people on the same side, working toward a shared goal.”

Being a Groucho Marx fan, I keep thinking of his one liner, “A clown is like an aspirin, only he works twice as fast.” Hey, CKD patients can’t take aspirin (if they’re NSAIDS or nonsteroidal anti-inflammatory drugs), so why not take humor instead?

But what happens to us physically when we laugh? I checked in with my old standby, The Mayo Clinic, at https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044456?pg=1 and found the following information about laughter and your body.

Short-term benefits

Laughter can:

Stimulate many organs. Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain.

Activate and relieve your stress response. A rollicking laugh fires up and then cools down your stress response, and it can increase your heart rate and blood pressure. The result? A good, relaxed feeling.

Soothe tension. Laughter can also stimulate circulation and aid muscle relaxation, both of which can help reduce some of the physical symptoms of stress.

Keep in mind that I am not a dialysis patient but hope that this rap is helpful to those who are. Sit back, turn up the speakers, and have some short term benefits courtesy of Dr. Greenfield.

I laughed… and I learned, but I was really interested in the effects of laughter that could help Chronic Kidney Disease patients in the early and moderate stages. WebMD at https://www.webmd.com/balance/features/give-your-body-boost-with-laughter#2 had a bit more information about that. Mind you, these results are observational or the results of very small studies.

Blood flow. Researchers at the University of Maryland studied the effects on blood vessels when people were shown either comedies or dramas. After the screening, the blood vessels of the group who watched the comedy behaved normally — expanding and contracting easily. But the blood vessels in people who watched the drama tended to tense up, restricting blood flow.

Immune response. Increased stress is associated with decreased immune system response, says Provine. (He’s a professor of psychology and neuroscience at the University of Maryland, Baltimore County and author of Laughter: A Scientific Investigation.) Some studies have shown that the ability to use humor may raise the level of infection-fighting antibodies in the body and boost the levels of immune cells, as well.

Blood sugar levels. One study of 19 people with diabetes looked at the effects of laughter on blood sugar levels. After eating, the group attended a tedious lecture. On the next day, the group ate the same meal and then watched a comedy. After the comedy, the group had lower blood sugar levels than they did after the lecture.

Reminder: Diabetes is the number one cause of CKD. CKD means a compromised immune system. Healthy blood flow is necessary for healthy kidneys.

Tomorrow is Halloween (Happy birthday to my brother Paul!), so I wanted to try my hand at some macabre humor.

 

Obituary –

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 died peacefully on October 20th, 2017, on Amazon.com and B & N.com at the age of three. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is survived by SlowItDownCKD 2011 & SlowItDownCKD 2012, which were both born of a need for larger print, more comprehensive indexes, and a less wieldy book to hold. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was preceded by What Is It and How Did I Get It? Early Stage Chronic Kidney DiseaseThe Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 gave birth to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, SlowItDownCKD 2015 and SlowItDownCKD 2016. Flowers and condolences in the form of Chronic Kidney Disease Awareness may be sent to any and all vehicles for spreading awareness of this disease.

Researching laughter and CKD led to only laughter and dialysis sites. I wasn’t satisfied with that and kept looking only to find this generalized, but easily understood, image from The Huffington Post Partners at .

I don’t think we can forget that anything that’s good for your heart will benefit the kidneys. Since CKD is an inflammatory disease, reducing inflammation of any kind in the body can only be a good thing. Look at that! Both bad cholesterol and systolic blood will be lowered. These are all kidney related. Hypertension is the second most common cause of CKD. Cholesterol makes the heart work harder, which can raise your blood pressure. Uh-oh.

Another thing I realized is that if I find something wrong, you know like the termite invasion or the a/c breaking in 100 degree weather, my first response is laughter. I never knew why. Hmmm, maybe I’ve been protecting my body all along.

Until next week,

Keep living your life!

This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

A Laboring Electrolyte

It’s Labor Day here in the United States. I feel a special affinity for this holiday and wanted to explain the day some more. Oh, I already did in SlowItDownCKD 2016:

“For those of you in the United States, here’s hoping you have a healthy, safe Labor Day. I come from a union family. So much so that my maternal grandfather was in and out of jail for attempting to unionize brass workers. That was quite a bit of pressure on my grandmother, who raised the four children and ran a restaurant aimed at the men who were saving up funds to bring their families here from Europe. I knew there was more than my personal history with the holiday so I poked around and found this from http://www.usatoday.com/story/news/nation/2016/09/04/labor-day-history/89826440/

‘In the late 1800s, the state of labor was grim as U.S. workers toiled under bleak conditions: 12 or more hour workdays; hazardous work environments; meager pay. Children, some as young as 5, were often fixtures at plants and factories. The dismal livelihoods fueled the formation of the country’s first labor unions, which began to organize strikes and protests and pushed employers for better hours and pay. Many of the rallies turned violent.

On Sept. 5, 1882 — a Tuesday — 10,000 workers took unpaid time off to march in a parade from City Hall to Union Square in New York City as a tribute to American workers. Organized by New York’s Central Labor Union, It was the country’s first unofficial Labor Day parade. Three years later, some city ordinances marked the first government recognition, and legislation soon followed in a number of states.’”

Now, how do I transition from Labor Day to magnesium? Hmmm, my hard working daughter brought up the subject in today’s phone conversation, but that doesn’t seem like a good transition. Aha! Magnesium is a hard working electrolyte. Okay, that works for me.

Let’s start off with the basics. This passage from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will give you an idea of what magnesium is and what it may have to do with you as a CKD patient:

“In order to fully understand the renal diet, you need to know a little something about electrolytes. There are the sodium, potassium, and phosphate you’ve been told about and also calcium, magnesium, chloride and bicarbonate. They maintain balance in your body. This is not the kind of balance that helps you stand upright, but the kind that keeps your body healthy. Too much or too little of a certain electrolyte presents different problems.”

Problems? With magnesium? Maybe we need to know what magnesium does for us. The medical dictionary part of The Free Dictionary by Farlex at http://medical-dictionary.thefreedictionary.com/magnesium tells us:

“An alkaline earth element (atomic number 12; atomic weight 24.3) which is an essential mineral required for bone and tooth formation, nerve conduction and muscle contraction; it is required by many enzymes involved in carbohydrate, protein and nucleic acid metabolism. Magnesium is present in almonds, apples, dairy products, corn, figs, fresh leafy greens, legumes, nuts, seafood, seeds, soybeans, wheat germ and whole grains. Magnesium may be useful in treating anxiety, asthma and cardiovascular disease; it is thought to prevent blood clots, raise HDL-cholesterol, lower LDL-cholesterol, reduce arrhythmias and blood pressure, and to help with depression, fatigue, hyperactivity and migraines.”

All this by an electrolyte that constitutes only 1% of extra cellular fluid? I’m beginning to suspect that magnesium is the under explained electrolyte.

All right then, what happens if you have too much magnesium? Keep in mind that as CKD patients, electrolytes are not being as effectively eliminated by our kidneys as they could be since we have some degree of decline in our kidney function.

The U.S. Dept. of Health & Human Services of the National Institutes of Health at https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ lays it out for us:

“Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures, personality changes, abnormal heart rhythms, and coronary spasms can occur …. Severe magnesium deficiency can result in hypocalcemia or hypokalemia (low serum calcium or potassium levels, respectively) because mineral homeostasis is disrupted….”

Well, who’s at risk for magnesium deficiency? The same source tells us:

“Magnesium inadequacy can occur when intakes fall below the RDA but are above the amount required to prevent overt deficiency. The following groups are more likely than others to be at risk of magnesium inadequacy because they typically consume insufficient amounts or they have medical conditions (or take medications) that reduce magnesium absorption from the gut or increase losses from the body.

People with gastrointestinal diseases
The chronic diarrhea and fat malabsorption resulting from Crohn’s disease, gluten-sensitive enteropathy (celiac disease), and regional enteritis can lead to magnesium depletion over time …. Resection or bypass of the small intestine, especially the ileum, typically leads to malabsorption and magnesium loss ….

People with type 2 diabetes
Magnesium deficits and increased urinary magnesium excretion can occur in people with insulin resistance and/or type 2 diabetes…. The magnesium loss appears to be secondary to higher concentrations of glucose in the kidney that increase urine output ….

People with alcohol dependence
Magnesium deficiency is common in people with chronic alcoholism…. In these individuals, poor dietary intake and nutritional status; gastrointestinal problems, including vomiting, diarrhea, and steatorrhea (fatty stools) resulting from pancreatitis; renal dysfunction with excess excretion of magnesium into the urine; phosphate depletion; vitamin D deficiency; acute alcoholic ketoacidosis; and hyperaldosteronism secondary to liver disease can all contribute to decreased magnesium status ….

Older adults
Older adults have lower dietary intakes of magnesium than younger adults …. In addition, magnesium absorption from the gut decreases and renal magnesium excretion increases with age …. Older adults are also more likely to have chronic diseases or take medications that alter magnesium status, which can increase their risk of magnesium depletion ….”

Notice how many times the kidneys were mentioned. Quick, go check your lab results. You’ll notice there’s no magnesium level. If you’d like your magnesium tested, you or your doctor need to order a specific test for that. Some labs will allow you to order your own magnesium test; others will require a doctor’s orders.

Until next week,
Keep living your life!

Two Masters

A friend of mine, the one I mentioned when I wrote about renal sally ports, recently has had a relapse. Yep, he neglected to take his medications at the proper times. That can cause havoc for mental illness, especially bipolar disorder. It got me to thinking. What if my friend had Chronic Kidney Disease AND bipolar disease? How could he handle both diagnoses at the same time?

Let’s start at the beginning. There are certain drugs I take in the hopes of delaying dialysis as long as possible. One of those is the ACE Inhibitor I’d been taking for hypertension for about two decades before I was even diagnosed with CKD. Here’s the definition from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: “ACE Inhibitor: A blood pressure medication that lowers protein in the urine if you have CKD.”

It works by both relaxing the blood vessels and reducing the blood volume. This, in turn, lowers your blood pressure which, in turn, lowers your heart’s oxygen needs. And the problem for my friend would be? Well, maybe just remembering to take the medication each day.

However, according to MedicineNet.com at http://www.medicinenet.com/ace_inhibitors/page2.htm,
The most common side effects are:
• Cough
• Elevated blood potassium levels
• Low blood pressure
• Dizziness
• Headache
• Drowsiness
• Weakness
• Abnormal taste (metallic or salty taste)
• Rash
• Chest pain
• Increased uric acid levels
• Sun sensitivity
• Increased BUN and creatinine levels

Did you notice increased uric acid levels, and increased BUN and creatinine levels? This could be a dicey medication for CKD patients if they did not heed their doctor’s advice once (s)he has evaluated the patient’s labs. That’s the problem here: not having the ability to be a compliant patient during a bipolar episode.

I was also prescribed a drug for cholesterol, a statin. This drug inhibits (the word of the day) an enzyme in the liver that produces lipids. As reported in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:
According to Dr. Dr. Robert Provenzano, chief of nephrology at St. John Hospital and Medical Center in Detroit, “…LDL, bad cholesterol, directly impacts acceleration of Chronic Kidney Disease.” One of the possible side effects is of this drug is Type 2 Diabetes. All I can say about that is thank goodness these side effects are not the norm.

Here’s the problem: statins have to be taken at night. That’s when the body produces cholesterol. Again, can my friend be compliant during an episode? What about the drugs he already takes? Are they going to somehow interfere with these common drugs for CKD?

Lithium is the usual drug for him. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:
“There were two Plenary Sessions I attended at the Southwest Nephrology Conference I attended last weekend. It was at the second one, ‘Psychiatric issues in kidney patients’ that I suddenly sprang to attention. What was this man saying? Something about lithium doubling the risk for Chronic Kidney Disease? And I was off… how many psychiatric patients knew that fact? How many of their caretakers knew that just in case the patient was not responsible at the time of treatment? What about children? Did their parents know? Was a screening for CKD performed BEFORE lithium was prescribed?”

Kidney.org at https://www.kidney.org/atoz/content/lithium has me downright frightened for my friend:

“What is lithium?
Lithium is a common medicine used to help calm mood for treating people with mental disorders. Since such disorders need lifelong treatment, long-term use of lithium may be harmful to organs, such as the kidneys.

How does lithium cause kidney damage?
Lithium may cause problems with kidney health. Kidney damage due to lithium may include acute (sudden) or chronic (long-term) kidney disease and kidney cysts. The amount of kidney damage depends on how long you have been taking lithium. It is possible to reverse kidney damage caused by lithium early in treatment, but the damage may become permanent over time.

What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

I keep reminding myself that the word “may” appears over and over again. Yet, since my friend either wasn’t taking his medication at all or not taking it as prescribed, it wasn’t working…and he is still at risk for CKD.

I found this tidbit on Drugs.com at https://www.drugs.com/interactions-check.php?drug_list=1477-0,1489-0, ACE Inhibitors: “…may increase the blood levels and effects of lithium. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications.” Wait. So you need an ACE Inhibitor if you have CKD, but it can interfere with the lithium you take if you’re bi-polar. And statins? While I couldn’t find any interactions, I did find the caution that there may be some and to check with your doctor. I am aware he takes an anti-depressant, but in researching, have discovered there are many that are safe to take with CKD.

My friend usually goes to his medical appointments, but he neglects to mention certain symptoms and sometimes has trouble telling reality from non-reality. Does he know whether his doctor has warned him about the higher risk of CKD or not? Does he know that he may develop a form of diabetes from long term use of lithium? Does he know that if even one of his parents has CKD, his risk is doubled yet again?

Tomorrow is July 4th, the day the United States celebrates its independence from the tyranny of England. Where is my friend’s independence from the tyranny of his mental illness? The English and the United States have learned to peacefully share our existences (right, English readers?). Here’s hoping my friend can learn to peacefully share his existence with bipolar disorder… and CKD should he develop it. Heaven forbid.

Until next week,
Keep living your life!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“VA eKidney Clinic

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

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

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

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

 

 

 

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

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

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

Until next week,

Keep living your life!

Never Too Old to Learn

CoffeeCupPopCatalinStockLast week, we were delighted to have an overnight guest we hadn’t seen for a year or two. While we were all waking ourselves up the next morning, I asked him if he’d like some coffee.  Yep, he’s my family; that look of delight on his face when he thought of coffee confirmed it. Then I asked if he took milk in his coffee. Hmmm, more confirmation: he passed on the milk claiming lactose intolerance, another family trait. But when we got to the sugar question, he startled me. His response was something like no thanks, I have high cholesterol. After a moment of stunned silence, I asked why he connected cholesterol and sugar. He said his doctor told him to cut down on sugars to lower his cholesterol. Hmmm, very interesting.

This is the definition of cholesterol from What Is It and How Did I Get It? Early Stage Chronic Early Disease:FullSizeRender (2)

While the basis for both sex hormones and bile, can cause blockages if it accumulates in the lining of a blood vessel.

If that doesn’t ring a bell, here’s the definition of dyslipidemia:

Abnormal levels of cholesterol, triglyceride or both

Now we know there’s a normal and an abnormal level of cholesterol and that can’t be good. Is that a big deal?

It is if you have Chronic Kidney Disease.  Dr. Joseph Vassalotti, one of leading nephrologists in the U.S., explained it to reporter Jane Brody in an interview which is included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.

IMG_2982Good  control  of  blood  sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function.

I repeat, “…can delay the loss of kidney function.” That has been your ultimate goal since you were diagnosed, hasn’t it?

You may become confused by the three different kinds of cholesterol readings when you see the results of your blood tests.  I know I was, so I researched them and then wrote about them in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol. LDL is Low Density Lipoprotein or the ‘bad’ kind that can clog your arteries. VLDL is Very Low Density Lipoprotein and one of the bad guys, too. It contains more triglycerides than protein and is big on clogging those arteries.FullSizeRender (3)

Wait a minute. Where did triglycerides come into this? According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/triglycerides/ART-20048186

Triglycerides and cholesterol are separate types of lipids that circulate in your blood. Triglycerides store unused calories and provide your body with energy, and cholesterol is used to build cells and certain hormones. Because triglycerides and cholesterol can’t dissolve in blood, they circulate throughout your body with the help of proteins that transport the lipids (lipoproteins).

Still with me?  Good, because you can do something about this.

cholestero

Sometimes, it’s as simple as lifestyle changes like adjusting your diet. While I don’t agree with all of this advice, DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/lowering-cholesterol-with-chronic-kidney-disease/e/5304 can get you started.

  •  Avoid foods high in saturated fat and cholesterol such as whole milk, cheese and fat from meat.
  • Bake, grill, broil and roast your poultry, fish and meat. Choose lean cuts of meat and trim off any fat.
  • Eggs are an excellent source of protein, but the yolks are high in cholesterol. Try egg substitutes like Egg Beaters® or Scramblers®, or substitute two egg whites for a whole egg.
  • Eat at least two servings of fish every week. Salmon, tuna, herring and trout contain good amounts of omega-3 fatty acids that lower your risk of heart disease.
  • Try spreads like Benecol® or Take Control® in place of butter or margarine. Plant sterols and stanols in these spreads help lower cholesterol levels.
  • Choose oils that are high in mono- and polyunsaturated fats: canola, olive, peanut, corn, safflower, soybean and sunflower.
  • Read food labels and try to eliminate foods with trans-fats (found in hydrogenated oils, margarine and many commercially prepared snack foods).
  • Eat kidney-friendly fruits and vegetables.water melon

Of course, if you’re diabetic or prediabetic, you need to modify these suggestions for your diet.

As was suggested in this Everyday Health article (http://www.everydayhealth.com/high-cholesterol/fitness-and-cholesterol.aspx) included in SlowItDownCKD 2015, exercise will help.

       Try these exercise options to help shed pounds and manage high cholesterol:

  • Walking
  • Jogging or running
  • Swimming
  • Taking an aerobics class
  • Biking
  • Playing tennis, basketball, or other sports
  • Using weight machines or lifting free weights to build muscle tone

statinsIf life style changes don’t work for you, your doctor may prescribe a statin.  The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/statin defines this as:

any of a group of drugs (as lovastatin and simvastatin) that inhibit the synthesis of cholesterol and promote the production of LDL-binding receptors in the liver resulting in a usually marked decrease in the level of LDL and a modest increase in the level of HDL circulating in blood plasma

There are substantial arguments against taking statins, but there are also substantial arguments for taking them.  This is something you have to discuss with your doctors since you have a unique medical condition.

Finally, sugar. What did my cousin’s doctor mean about sugar’s role in lowering his cholesterol? This was news to me, so I researched. Sure enough, my cousin’s doctor was right.  According to Progressive Health at http://www.progressivehealth.com/sugar-may-be-the-cause-of-your-elevated-cholestero.htm:

Sugar is a good example of a carbohydrate with high glycemic index. It can, therefore, increase the amount of small, dense LDL particles in the blood.

Although, health experts used to advocate that we cut the amount of sugar we consume because high blood sugar can cause insulin resistance and increase the risk of diabetes, there is now another reason to cut down on our sugar consumption.sugar

A number of studies show that sugar can affect the kind and amount of cholesterol released into the blood.

So? According to the US National Library of Medicine National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4297703/

That’s a pretty big ‘so.’

Until next week,

Enjoy your life!

Updates, Anyone?

FullSizeRender (2)Several months ago, an Arizona reader asked me to meet her for lunch to talk over her Chronic Kidney Disease journey and mine. I was open to the idea and glad to be able to share ideas with each other. Uh-oh, during the conversation, while trying to share my iPhone apps with her, I discovered that one of those I use to help me is no longer available to new installers. That got me to thinking about what else may have changed in the CKD electronic world.

Time to back track just a bit. I have an iPhone and look for apps for those. Many of the apps I looked at are also available for Androids, iPads, and iPod Touch. 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

  • 02-77-6660_ebe_myfoodcoachappKidneyAPPetite– 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

kidneyapp

  • 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 IMG_2982Dietician. 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.

I have KidneyAPPetite on my phone, but keep using KidneyDiet instead. It keeps track of the 3 Ps (protein, potassium, and the one missing from food labels: phosphorous), sodium, calories, carbohydrates, cholesterol, and fat, and fluid intake. The very nice part of the app? You can add the foods you eat that are not on the food list provided. Unfortunately, this is the one I mentioned in the first paragraph. This is what’s presently on their website:

The KidneyDiet® app is no longer being sold or supported. It, and all your data, will continue to reside on your device unless you delete it.

Thank you for your patronage. We hope KidneyDiet® has helped you.

Sincerely,
The KidneyDiet® Team

FullSizeRender (3)I consider this a great loss for those looking for a simple nutritional app for their CKD.

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.

Restaurant Nutrition is another app offered by Google Play, which means I can’t even get into it. I did get through to the reviews and couldn’t find any positive ones. I didn’t see the point in pursuing this any further.IMG_2980

There are even kidney disease games, such as KidneyWarrior, to teach yourself and your loved ones about your disease. This is the author’s description of the game:

“A new hero emerges to fight a dreadful illness. A quest to save his father. A brand NEW approach to mobile gaming •Play as Glo, a young hero on his exciting adventure to save his father •SHOOT, SMACK, and SPIN your way through 3 different and exciting stages, packed with hours of gaming •LEARN about what kidneys do and how kidney disease affects people worldwide Created on behalf of Project ARK, an organization focused to support research efforts on combating kidney disease. As a high school organization, Project ARK seeks to raise awareness on campus and within the community.”

To borrow a term from a now defunct cigarette brand: We’ve come a long way, baby!

Until next week,

Keep living your life!

Feeling the Pressure

labor dayFor those of you in the United States, here’s hoping you have a healthy, safe Labor Day.  I come from a Union family. So much so that my maternal grandfather was in and out of jail for attempting to unionize brass workers. That was quite a bit of pressure on my grandmother, who raised the four children and ran a restaurant.

I knew there was more than my personal history with the holiday so I poked around and found this from http://www.usatoday.com/story/news/nation/2016/09/04/labor-day-history/89826440/

“In the late 1800s, the state of labor was grim as U.S. workers toiled under bleak conditions: 12 or more hour workdays; hazardous work environments; meager pay. Children, some as young as 5, were often fixtures at plants and factories.

The dismal livelihoods fueled the formation of the country’s first labor unions, which began to organize strikes and protests and pushed employers for better hours and pay. Many of the rallies turned violent.

On Sept. 5, 1882 — a Tuesday — 10,000 workers took unpaid time off to march in a parade from City Hall to Union Square in New York City as a tribute to American workers. Organized by New York’s Central Labor Union, It was the country’s first unofficial Labor Day parade. Three years later, some city ordinances marked the first government recognition, and legislation soon followed in a number of states.”

Now that’s pressure, but I want to write about another kind of pressure today: your blood pressure.Mahomeds Sphygmograph

Being one of those people who is required to check their blood pressure at least once a day, I was surprised to learn that doctors didn’t realize the importance of maintaining moderate blood pressure until the 1950s. Yet, ancient Chinese, Greeks, and Egyptians knew about the pulse. I wonder what they thought that was.

The American Heart Association explains the difference between the blood pressure and the pulse, and offers a chart to exemplify. The column without the heading refers to ‘Heart Rate.’

Blood Pressure
What is it? The force the heart exerts against the walls of arteries as it pumps the blood out to the body The number of times your heart beats per minute
What is the unit of measurement? mm Hg (millimeters of mercury) BPMs (beats per minute)
What do the numbers represent? Includes two measurements:
Systolic pressure
(top number):
 The pressure as the heart beats and forces blood into the arteries
Diastolic pressure
(bottom number):
 The pressure as the heart relaxes between beats
Includes a single number representing the number of heart beats per minute
Sample reading 120/80 mm Hg 60 BPM

You can read more about this at http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Blood-Pressure-vs-Heart-Rate_UCM_301804_Article.jsp.

bp cuffAccording to Withings, a French company that sells blood pressure monitoring equipment, at http://blog.withings.com/2014/05/21/the-history-of-blood-pressure/:

“The first study on blood circulation was published in 1628 by William Harvey – an English physician. He came to the conclusion that the heart acts as a pump. At that point it wasn’t clear that blood circulated, but after a little calculation he was pretty sure that blood is not ‘consumed’ by the organs. The physician then concluded that blood must be going though (sic) a cycle.”

Ah, but did his measurement include both numbers? In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I satisfied my own curiosity as to why our blood pressure readings always have two numbers, one atop the other:What is it

“The first number… called the systolic is the rate at which the heart contracts, while the second or diastolic … is when the heart is at rest between contractions.  These numbers measure the units of millimeters of mercury to which your heart has raised the mercy.”

Uh, raised the mercury of what? Well it’s not the sphygmomanometer as we now know it. By the way, this is the connection between blood pressure and Chronic Kidney Disease that I mentioned in SlowItDownCKD 2015:

“I wonder how frustrated Dr. Bright became when he first suspected that hypertension had a strong effect on the kidneys, but had no way to proveIMG_2980 that theory since the first practical sphygmomanometer (Me here: That’s the device that measures your blood pressure.)  wasn’t yet available.”

Well, why is hypertension – high blood pressure – important in taking care of your kidneys anyway?  It’s the second leading cause of CKD. The Mayo Clinic succinctly explains why at http://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/high-blood-pressure/art-20045868

“Your kidneys filter excess fluid and waste from your blood — a process that depends on healthy blood vessels. High blood pressure can injure both the blood vessels in and leading to your kidneys, causing several types of kidney disease (nephropathy). “

Well, how do you avoid it then? One way is to take the pressure off yourself. (As a writer, I’m thoroughly enjoying that this kind of pressure can affect the other kind – the blood pressure. As a CKD patient, I’m not.)

Pressure on yourself is usually considered stress. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, there’s an explanation of what stress does to your body.

FullSizeRender (3)“…we respond the same way whether the stress is positive or negative…. First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {High blood sugar} and hypertension {High blood pressure} both play a part in Chronic Kidney Disease. If you still haven’t resolved the stress, additional hormones are secreted for more energy.”

What else? This list from the American Kidney Fund was included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:IMG_2982

  • Eat a diet low in salt and fat
  • Be physically active
  • Keep a healthy weight
  • Control your cholesterol
  • Take medicines as directed
  • Limit alcohol
  • Avoid tobacco

AKF logo Why am I not surprised at how much this looks like the list for healthy kidneys?

I was just thinking: what better day to start working on this list than Labor Day?

Until next week,

Keep living your life!

 

 

Maybe for You, But Not for Me

hairLast week, when I wrote about thinning hair, I received loads of suggestions. While I was pleased with all the interaction, it was clear to me that we had people answering from three different positions: pre-dialysis (like me at Stage 3 Chronic Kidney Disease), dialysis, and post-transplant. What also became clear is that the ‘rules’ for each position are different. That got me to wondering.

But first, I think a definition of each of these is necessary. My years teaching English ingrained in me that ‘pre’ is a prefix meaning before; so pre-dialysis means before dialysis. In other words, this is CKD stages 1-4 or 5 depending upon your nephrologist. It’s when there is a slow progression in the decline of your kidney function.

I remembered a definition of dialysis that I liked in SlowItDownCKD 2015, and so, decided to repeat it here.IMG_2980

“According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo,

‘Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs. There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.’”

And post -transplant?  Simply put, it means after having had an kidney (or other organ) placed in your body to replace one that doesn’t work anymore.

I know as a pre-dialysis that I have certain dietary restrictions.  Readers have told me some of theirs and they’re very different. It’s not the usual difference based on lab results that will tell you whether you need to cut back more on one of the electrolytes this quarter. It seemed like an entirely different system.

FullSizeRender (2)Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see what my basic dietary restrictions as a pre-dialysis CKD patient are.

 “The (e.g. renal) diets seem to agree that protein, sodium, phosphorus and potassium need to be limited. … Apparently, your limits may be different from mine or any other patient’s.  In other words, it’s personalized.”

Well, what about those on dialysis? What do their dietary guidelines look like? I found this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Knowing End Stage Renal Disease is not my area of expertise, I took a peek at National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)National Institutes of Health (NIH), at http://kidney.niddk.nih.gov/KUDiseases/pubs/eatright/index.aspx#potassium anyway to see what dialysis patients can eat.

“Potassium is a mineral found in many foods, especially milk, fruits, and vegetables. It affects how steadily your heart beats. Healthy kidneys keep FullSizeRender (3)the right amount of potassium in the blood to keep the heart beating at a steady pace. Potassium levels can rise between dialysis sessions and affect your heartbeat. Eating too much potassium can be very dangerous to your heart. It may even cause death.”

I suspected that potassium is not the only dietary problem for dialysis and dug a bit more.  I discovered this information on MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=78054, along with the caveat that these also need to be individualized as per lab results.

  1. Fluids: Allowance is based primarily on the type of dialysis and urine output. If you have any edema, are taking a diuretic, and/or have congestive heart failure, your allowance will be adjusted.
  2. Sodium: This will be modified to maintain blood pressure and fluid control and to help prevent congestive heart failureand pulmonary edema.
  3. Potassium: Your intake of this will be adjusted to prevent your blood levels from going too high or too low.
  4. bananaPhosphorus: The majority of dialysis patients require phosphate binders and dietary restrictions in order to control their blood phosphorus levels.
  5. Protein: Adequate protein is necessary to maintain and replenish your stores. You may be instructed on increasing your intake now that you are on dialysis.
  6. Fiber: There is a chance that constipation may be a problem due to fluid restrictions and phosphate binders, so it’s important to keep fiber intake up. You will need guidance on this because many foods that are high in fiber are also high in potassium.
  7. Fat: Depending on your blood cholesterol levels, you may need to decrease your intake of trans fat, saturated fat, and cholesterol.
  8. Calories: If you are over or underweight, you will be instructed on adjusting the amount of calories that you take in each day.
  9. Calcium: Most foods that contain calcium also contain phosphorus. Due to your phosphorus restrictions, you will need guidance on how to get enough calcium while limiting your intake of phosphorus.

Big difference here!  More protein, less calcium, phosphate binders, fat and calcium. No wonder the responses I got to last week’s blog were so varied.

And post-transplant? What about those dietary restrictions? The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/kidney-transplant/manage/diet-nutrition/nuc-20209734 has that one covered, with the same warning as the other two groups’ diets: your labs dictate your amounts.

  • Eating at least five servings of fruits and vegetables each dayfruits and veggies
  • Avoiding grapefruit and grapefruit juice due to its effect on a group of immunosuppression medications (calcineurin inhibitors)
  • Having enough fiber in your daily diet
  • Drinking low-fat milk or eating other low-fat dairy products, which is important to maintain optimal calcium and phosphorus levels
  • Eating lean meats, poultry and fish
  • Maintaining a low-salt and low-fat diet
  • Following food safety guidelines
  • Staying hydrated by drinking adequate water and other fluids each day

So it looks like you get to eat more servings of fruits and vegetables a day, must avoid grapefruit and its juice, and be super vigilant about calcium and phosphorus levels. Notice the same suggestion to have enough fiber in your diet as when on dialysis.

Whoa! We have three different sets of diet guidelines for three different stages of CKD, along with the strict understanding that everything depends upon your lab results. That means that the post-transplant patients were right – for them – that I needed more protein.  And the dialysis patients were right – for them – too. But for the pre-dialysis patients? Nope, got to stay below five ounces daily. IMG_2982

Until next week,

Keep living your life!

Sexy!

IMG_2867Sometimes as you age, you find that sex is not that important… or, at least, the hanging from the chandeliers kind isn’t. *sigh* Add to the age factor that you and/or your partner may have physical limitations or be taking medication that impedes indulging as often and as fervently as you used to. *sigh*sigh* Now add your Chronic Kidney Disease to this equation. *sigh*sigh*sigh*

Does this mean you’re doomed to a life of fervent hugging and kissing and no more? Not at all, my friends, not at all.

Let’s take a look at what I had to say (oh, all right, write) about the glorious, yet somehow still taboo, topic of sex for CKD patients. Those of you Book Coverwith a print copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will find this begins on page 100. If you have the digital version, do a word search for ‘sex.’ It’ll be the third finding on the search.

I haven’t found too much about sex that’s different from the problems of non-CKD patients although with this disease there may be a lower sex drive accompanied by a loss of libido and an inability to ejaculate.  Usually, these problems start with an inability to keep an erection as long as usual.  The resulting impotency has a valid physical, psychological or psycho-physical cause.

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body.  Or maybe it’s leaky blood vessels.  Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones. Possibly, you’re tired from CKD induced anemia.  I’ve just mentioned a few possibilities. The silver lining is that there are almost as many treatments as there are causes.

While E.D. can be caused by renal disease, it can also be caused by diabetes and hypertension. All three are of importance to CKD patients. Sometimes, E.D. is caused by the medications for hypertension, depression and anxiety.  But, E.D. can also be caused by other diseases, injuries, surgeries, prostate cancer or a host of other conditions and bodily malfunctions. Psychologically, the problem may be caused by stress, low self-esteem, even guilt to name just a few of the possible causes.

blood pressure 300dpi jpgThe usual remedies for E.D. can be used with CKD patients, too, but you need to make certain your urologist and your nephrologists work together, especially if your treatment involves changing medications, hormone replacement therapy or an oral medication like Viagra. There are other treatments not mentioned here….

Sometimes, the treatment is as simple as counseling and the cessation of smoking and alcohol.  Hmmmm, as CKD patients, we’ve already been advised to stop smoking and drinking.  This is another reason for male CKD patients to do so.

Women with CKD may also suffer from sexual problems, but the causes can be complicated.  As with men, renal disease, diabetes and hypertension may contribute to the problem.  But so can poor body image, low self-esteem, depression, stress and sexual abuse [It’s become clear since the book was published in 2011 that men also may suffer from these conditions]. Any chronic disease can make a man or a woman feel less sexual.

Some remedies for women are the same as those for men.  I discovered through my research that vaginal lubricants and technique, routine, and environment changes when making love, warm baths, massage, and vibrators can help. Again, there are other, more medical treatments.

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed.  I was obsessed with my [e.g. premature and unnecessary] revulsion of dialysis and needed to hear over and over again that it was a couple of decades too early to worry about this.  I was also tired and didn’t know why, just worried that I would always need an afternoon rest period.… Then I discovered that vaginal strep B can occur in women over 60 with CKD.  Luckily for me, if you catch it and treat it early on, it’s just an infection that you take antibiotics to kill.  If you don’t treat it early, you just may be looking at some serious consequences.

Since we’re in the early stages of CKD, chances are the sexual problem is not physical other than being tired.  I never talked to my nephrologist about sex because I felt there was no reason to, and I had a partner who was willing to work around my rest periods until I had the energy.  But, I sleepam convinced, that if I ever do feel I have reason, I would talk to him. I’m older and prefer women doctors for the most part especially when it comes to private matters but this man is the specialist who knows far more than I do about this disease I am struggling to prevent from progressing.  There is a point when you realize your life is more important than not being embarrassed.

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too.  And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful.  You’ve got to keep in mind that some CKD patients never have sexual problems, no change in frequency and depth of desire and no impairment in the act itself.  This is not the time to make yourself the textbook case of the CKD patient who suffers sexually because of her disease. The best advice I received in this area was make love even if you don’t want to.  Magic.

I wrote that five years ago and very little has changed. You’ll see that I added an update in brackets and omitted outdated information.  Otherwise, my advice is the same.  But keep in mind that I am not a doctor and have never claimed to be one. Speak to your nephrologist if you feel your sex life is being hampered by your CKD.

Check The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 to see if they have more information about sex and our disease.IMG_1398

Wow!  I keep the blog to about 1,000 words and I’m already over.  It’s just as well, we’re off to find some delicious candles and add some sexy music to the iPod… just in case we’re in the mood sometime soon, you understand.

Until next week,

Keep living your life!

Going Mental

Ilana Contest Winner!  Congratulations to Ilana Lydia for winning the photo contest for the Weirdest Place to read one of my CKD books.  She took a little poetic license and had her cat read the digital version on her computer.  I never would have thought of that… or my Bear’s reading one of the books while welding or Abby’s reading one while walking the tightrope and twirling a hoola hoop.  (They were disqualified because they’re immediate family.)

Thanks for all the entries, you creative readers, you. Ilana, please contact me privately so I can send you a brand new, personally inscribed copy of The Book of Blogs: Moderate Chronic Kidney Disease, Part 1.  If any of you have a contest idea you’d like to have me run, just let me know.  This contest idea was from avid reader, Geo DeAngelo.  Thanks again, Geo.DIGITAL_BOOK_THUMBNAIL

Aha, looks like there’s a free Path to Wellness health screening coming up. This one is in Mesa, Arizona, at Adelante Healthcare 1705 W. Main St. on the 20th from 8 to 1:30. That’s a Saturday. There are two requisites here: you must be over 18 and have a nuclear family member with diabetes, heart disease, or kidney disease OR a history of diabetes or high blood pressure yourself.

Path to Wellness screenings include the screening itself, immediate blood and urine results, doctor consult, onsite health education, 6 week Healthy Living Workshops, and help finding a family doctor.  Just call the National Kidney Foundation of Arizona for an appointment at 602 840 1644 for English speakers or 602 845 7905 for those who would prefer Spanish.NKF-logo_Hori_OB

Have I mentioned enough times that this screening is free?  Early diagnose is important so you can slow down the progression of the disease. You can’t be treated for the disease if you don’t know you have it.  Now you’ve just lost the ‘I don’t have the money for that’ excuse.  Be good to yourself and get screened.

Now, about that blog title.  You know when you have a preconceived notion that you seem to make things come out that way?  Okay, we all go for periodic blood tests.  The procedure is called venipuncture which simply means puncturing the vein. Since I’m on a cholesterol medication, it’s once every three months for me.  I went for the blood draw on Friday.

There are two phlebotomists at the Lab Corp attached to my PCP’s practice.  One is so heavy handed that it hurts and I have discreetly requested that 1. She not draw my blood and 2. She be told why I made that request.  It turns out this was not news to her, yet she continues to work there. She was not the problem this time.Abby book

The other phlebotomist has the touch of a butterfly and a great deal of personality to boot.  I know if she draws my blood, it’s not going to hurt. My veins are also becoming ‘difficult’ after all these years of blood tests.  They roll, collapse, or seemingly disappear. I just realized these problems are all associated with elderly patients.  Hey, I’m not there yet! Truthfully, some of these problems may have to do with the placement and depth of the needle. If you’re interested, there’s a fairly easy to understand ARO Onsite Training and Consulting (for phlebotomists) site at blood drawhttp://arotraining.com/images/Documents/Venipuncture%20Module%206_Venipuncture%20Complications%20and%20Special%20Circumstances.pdf

Finally, we get to the mental part.  While I knew the preferred phlebotomist wasn’t going to make me hurt – other than the initial pinch – it did hurt. I just didn’t experience the sensation that way. I have a close to the surface vein in my upper left arm and, after palpating but not finding a really good vein in the crooks of either of my elbows or the back of my hands, she decided to use that one… with my blessing.  I’d been wondering why no one ever tried that vein before. Note the size of the bruise this resulted in:IMG_1220

It worked for 1 ½ of the 3 tubes that were needed, then it collapsed.  She knew I’d have a whopping bruise, but I still didn’t feel the pain I should have been feeling according to my past experience of venipuncture and hers.  Why?

Ah, the brain is a marvelous thing. According to About Health at http://pain.about.com/od/whatischronicpain/a/feeling_pain.htm

Special pain receptors called nociceptors activate whenever there has been an injury, or even a potential injury, such as breaking the skin or Bear and bookcausing a large indentation.

Venipuncture, although it is to help keep you healthy, is an injury to the skin and vein.  So have I somehow been manipulating my nociceptors? No, I don’t think so.

There are many sites on the internet that explain how you can use visualization, transference, mental imagery, meditation, and other such techniques to lessen chronic pain. That’s not what I was dealing with. I knew, absolutely knew, I wasn’t going to experience any pain. I usually do some deep breathing, do not look at the site being punctured (wrote a whole blog about that a few years ago), and cracked jokes with the young lady performing the procedure.

In other words, there was no anxiety, no fear, no foreboding, just a simple case of I-have-to-do-this-therefore-I-will-and- I-will-experience-the-pain-as-mildly-annoying. I know. I know. I wish I could do this at the dentist’s office, too.

brainI had expected to offer you loads of scientific information about this from alternative medicine sites, but they all seem to say the same thing I just did.  Over 40 years ago, I was involved with Seagull Mind Training. That was a company (now defunct) that claimed to teach you how to use more of your brain power. I say we are using more, all of us, with the quest into mind/body connection, alternative and complementary medicine, and an overall awareness of our general good health. The difference is that we now accept this as commonplace.

While this is not something I would try with major surgery, you might be surprised at how well it works during your next blood draw.

Poor books seem to get ignored until the very end of my posts lately.  I urge you to share, people, share. If you’ve bought the Kindle version, there is a share program available. You can also ask your library to order copies.

Until next week,

Keep living your life!Digital Cover Part 2 redone - CopyWhat is it

Their Father’s Food  

GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBkHere’s hoping you all enjoyed your Father’s Day yesterday.  Although we were missing Nima who lives in New York and Kelly and Sean who both had to work, it was a very good day for us.  Lara’s love played the guitar for a sing-a-long and Darin showed us the newspaper article which quoted him.  Abby had to leave early for the Blues dance lesson she teaches, but we’d had a good, long afternoon together by that time.  Long enough that Lara finally got to really just talk with her dad.

It was all good, except the food.  Bear doesn’t have Chronic Kidney Disease and usually follows the renal diet with me anyway.  Yesterday was the exception.  Since we finally figured out that I’m not Bear’s mother and he’s not my father, this was the last Mother’s Day (He always makes me a bar b q with food I can eat.) or Father’s Day we would host. I gave him a pad and pen and said, “Write down your menu.”

Bear was raised in the Midwest and eats a lot of food that’s still strange to this ex New York Jew.  Let’s start with the honey baked ham.  Okay, he spent his childhood summers on his grandparents’ farm; I get that. I grew up not eating ham because it’s not kosher and we were practicing Jews.  But why isn’t it on the renal diet?ham

Thank you Wedliny Domowe at http://www.meatsandsausages.com/hams-other-meats/hams for this information. Ham is a processed meat.  It can be cured in a number of ways, but most include the use of salt, and nitrites, which themselves are either sodium or potassium. The dry method of curing uses salt, while the wet method uses brine. And what is brine but a solution of sodium in water? And then there’s smoking. {Ack! Smoke contains formaldehyde and alcohol.}

We know as CKDers that we need to limit our sodium intake. As I wrote in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, pages 73-4,

“Basically, sodium balances fluid levels outside your cells.  You need it because it is responsible for watering your cells.  This watering is the prompt for potassium to Book Coverdump waste [cell process by-products] from your cells….If you have damaged kidneys and cannot excrete most of the sodium you ingest, you’re up against higher blood pressure which may worsen your CKD which may further cut down on your elimination of sodium and so on and so forth in an ever spiraling cycle. In addition, for CKD patients, too much sodium causes fluid retention, thereby causing swelling, further resulting in weight gain, leading to shortness of breath.”

And let’s not forget that high blood pressure is the second leading cause of Chronic Kidney Disease.

Well, what about the potassium in the nitrite used in preserving the ham.  Why do CKDers have to limit the amount of potassium they ingest? By the way, too much sodium can increase your need for potassium.

But isn’t potassium good for you?  After all, it does help the heart, muscles, and our beloved kidneys function normally as well as dumping wastes from our cells. Here’s the kicker, an excess of potassium can cause irregular heartbeat and even heart attack.

We are not your everyday people whose kidneys can filter any excess potassium from our bodies.  We have compromised kidney function which could mean a buildup in potassium.  No wonder CKD may lead to cardiovascular problems!potassium

I’m almost afraid to look at the rest of Bear’s Father’s Day menu.  He also requested cold cuts of roast beef.  Uh-oh, that’s another cured meat.  Cold cuts also tend to be fattier cuts and have nitrates, which are different than the nitrites discussed above.

According to Dictionary.com at http://dictionary.reference.com/browse/nitrate, a nitrate is “a salt or ester [That’s an organic compound.] of nitric acid.”  Wait a minute!  Nitric acid is a corrosive liquid, as most of us learned way back in high school.

And, as Dr. Veeraish Chauhan (one of the nephrologists in Florida that received a donation of the book this past March when I was there) wrote in his April 6, 2013 {our wedding day!} blog, “… red meat could be a big source of uric acid, which has been shown to be associated with worsening of CKD.”

Red meat contains cholesterol.  Fattier cuts contain more cholesterol. This substance can clog the arteries, leading to heart problems.  We already have a higher risk of heart problems simply because we have CKD.  Why raise the risk???

And then we have the sweet potato casserole.  Sweet potatoes?  I don’t remember the last time I had one of those. Talk about potassium overload!  We already discussed the CKDers’ problems with that.sweet potato casserole

Well, what about the green bean casserole?  I didn’t have to eat the crispy, fried onions on top of it. But it’s in creamed mushroom soup.  Oh, right.  Creamed soup is high in phosphorous. The National Kidney Foundation at http://www.kidney.org/atoz/content/phosphorus.cfm tells us, although phosphorus is necessary to work with calcium for healthy bones:

“High phosphorus levels can cause damage to your body. Extra phosphorus causes body changes that pull calcium out of your bones, making them weak. High phosphorus and calcium levels also lead to dangerous calcium deposits in blood vessels, lungs, eyes, and heart. Phosphorus and calcium control is very important for your overall health.”

The orange mimosas seemed to delight everyone but Abby.  I didn’t even try one.  I.just.don’t.drink.  Too much alcoholism in my family history.  Anyway, while the orange juice in this drink didn’t seem to be a problem, the champagne was actually good for us, according to the National Institutes of Health.

Their MedlinePlus at http://www.nlm.nih.gov/medlineplus/news/fullstory_145838.html posted new findings about the benefits of wine.  Champagne is a wine.  Surprise!  If you have CKD, wine in moderation may help protect you from that health disease you’ve at risk of.carrot cake

I am not even going to analyze the carrot cake from Cheesecake Factory.  That is so bad for you on so many levels!  I am so glad I researched these foods AFTER the celebratory meal so I wasn’t tempted to spout this information to those enjoying the food.

I was thinking of combining the SlowItDown and book FB pages, twitter accounts, and website.  Any thoughts of your own about this?

Until next week,

Keep living your life!

Kidney Book Cover

Control That Chronic Condition

NKF-logo_Hori_OBThe National Kidney Foundation referred this reporter to me to discuss how I handle my chronic kidney disease.  Once she’d interviewed me, she decided to save the material and quotes I’d given her to use in an article on patient participation in their illnesses.

I have one thing to say to you, Laura Landro:  thank you.  Thank you from the bottom of my heart for making it clear that we CAN slow down the decline of our kidneys.  Thank you from the bottom of my heart for getting that message to so many people in one fell swoop.  And thank you from the bottom of my heart for making certain people know about SlowItDown.

While I added the images for the blog, this is the article as it appeared in the Wall Street Journal last Monday:  wsj

Patients Can Do More to Control Chronic Conditions

In the absence of cures, people can learn how to slow kidney disease, diabetes and other ills

By Laura Landro

By the time Gail Rae-Garwood was diagnosed with chronic kidney disease at age 60, it was already too late for prevention, and there is no cure. But Ms. Rae-Garwood decided she could do something else to preserve her quality of life: slow the progression of the disease.

For the millions of Americans over 50 who have already been diagnosed with chronic ailments like kidney disease, diabetes, heart disease, rheumatoid arthritis and chronic obstructive pulmonary disease, careful management can’t turn back the clock, but it can buy time. It takes adherence to medications, sticking to recommended diet and exercise plans, and getting regular checkups.

As simple as that sounds, experts say, patients often don’t hold up their end of the bargain, and doctors don’t always have the time to help between visits. Chronic ailments may also lead to depression, which itself is associated with poor adherence to medication across a range of chronic illness, according to a 2011 study in the Journal of General Internal Medicine.

“The whole goal in conditions that are lifelong, and aren’t going to go away, is to stabilize them and keep them as stable as possible for as long as possible,” says Edward Wagner, a researcher and founding director at Seattle-based Group Health Research Institute.

Patients’ Role

Dr. Wagner developed a protocol known as the chronic-care model in the 1990s, which has been increasingly adopted by many health-care providers. One of its primary goals, in addition to careful monitoring, is teaching patients self-management skills. “Evidence is mounting that the more engaged and activated patients are in their own care, the better the outcomes,” Dr. Wagner says.

Take kidney disease. One of the fastest-growing chronic conditions world-wide, it affects 26 million Americans, and millions of others are at increased risk, according to the National Kidney Foundation. Over time, the kidneys lose their ability to filter waste and excess fluid from the blood; the condition may be caused by diabetes, high blood pressure and other disorders. But patients may not have symptoms until it is fairly advanced. As dangerous levels of fluid and wastes build up in the body, it can progress to so-called end-stage renal disease, or kidney failure. Without artificial filtering, known as dialysis, or a kidney transplant, the disease can be quickly fatal.

But especially in earlier stages, lifestyle changes that ease the burden on the kidneys can have a marked effect, including eating less salt, drinking less alcohol and keeping blood pressure under control. Doctors may suggest a “renal diet” that includes limiting protein, phosphorous and potassium, because kidneys can lose the ability to filter such products.

Sometimes modest changes can make a difference. Even small amounts of activity such as walking 60 minutes a week might slow the progression of kidney disease, according to a study published last month in the Journal of the American Society of Nephrology.

There are plenty of resources to help kidney patients manage their disease, including the kidney foundation website (kidney.org) and classes offered by the dialysis division of DaVita HealthCare Partners Inc.  The company says it educates about 10,000 patients annually at free “Kidney Smart” classes across the country.

Getting the Word Out                     Book Cover

Ms. Rae-Garwood says she decided to become engaged in her own care and share what she learned with fellow patients, after she was diagnosed in 2008 with Stage 3 kidney disease.

“People need to be educated and learn how to manage it so that they are not immediately on dialysis or on death’s door,” she says.

Ms. Rae-Garwood wrote a 2011 book, “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,” and started a blog to offer its contents free online. She developed an educational program, kidney-book-coverSlowItDown, which is used by health educators to provide free classes in various communities such as the Salt River Pima-Maricopa Indian Community in Phoenix.

She acknowledges that it isn’t always easy to follow her own advice. “The disease is somewhat in control, but I’m getting older,” Ms. Rae-Garwood says. “And while I can control my renal diet, it’s harder to lose weight, and exercise isn’t always an option since I’ve hurt this or that on my body.” She takes blood-pressure and cholesterol medications, and tries to keep stress levels down.

She retired from both a college teaching post and acting last year but still keeps up a Facebook page, Twitter account and her blog to get the word out. “I’m serious about getting the necessary education to the communities that need it,” she says.

The article was published while I was still in Los Angeles after a Landmark Worldwide weekend.  I had no car, didn’t really know where I was, and had no idea how to get to a newsstand… if those even still exist.  Luckily, my daughter Nima – all the way on the other side of the United States – had gotten a print copy.  She’ll be mailing it to me any day now. (Right, Nima?).

I’m old fashioned enough that even if I’ve printed a copy of the article from the internet, I want to feel the pulp of the paper (if that’s what paper is still made from) in my hands and let it yellow with age in my files.  I am one happy Chronic Kidney Disease advocate these days.

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!

‘Twas The Night Before The Night Before Christmas

Christmas Tree’Twas the night before the night before Christmas and all through the house…. The night before the night before Christmas?  Where did the time go? Hmmmm, there are no children here to constantly remind us Christmas is coming.  We rarely watch television (although we often watch movies), so we didn’t see the ads that could have reminded us.  Oh, I did know it was coming… just not so quickly.

And that’s often the case when we deal with a chronic illness.  We know that doctor’s appointment is coming up and we’re eager to see the results of our blood tests.  After all, we’ve worked so hard on diet, exercise, sleep, and lack of stress (that’s funny: stressing for lack of stress).  We just didn’t know it was coming so quickly. Did we have enough time to lower our blood pressure?  Was it enough time to lose some weight?  Did we monitor our eating enough in this amount of time that our cholesterol numbers are down?  Time, time, time.  It all comes down to time.

I have a modest proposal (apologies there, Mr. Swift).  What if we ignore time and just always – okay, almost always – watch the diet, exercise, sleep enough, and avoid stress.  Oh right, that’s what we’re supposed to be doing: lifestyle changes.NAFLD

According to an article published in the European Journal of Social Psychology way back in September of 2009, it takes an average of 66 days to form a new habit. The article was written by Phillippa Lally and her colleagues from the Cancer Research UK Health Behaviour Research Centre based at UCL Epidemiology and Public Health, and was based on their research.  You can find more at: http://www.ucl.ac.uk/news/news-articles/0908/09080401

Since it’s habits that form your life style, I had trouble accepting that number so I kept researching.  Ugh, I kept coming up with the same number although one analysis of this same article did mention that it can take as few as 18 or as many as 254 days to form a habit depending upon the individual.  I’ll take the 18 days option, please.

All right, let’s try something else.  How about getting enough sleep.  How much sleep is enough sleep anyway?  According to Dr. Timothy Morgenthaler on the Mayo Clinic site (http://www.mayoclinic.com/health/how-many-hours-of-sleep-are-enough/AN01487), seven to eight hours is what an adult needs, but then he lists mitigating circumstances under which you might need more:

  • Pregnancy.      Changes in a woman’s body during early pregnancy can increase the need for      sleep.
  • Aging.      Older adults need about the same amount of sleep as younger adults. As you      get older, however, your sleeping patterns might change. Older adults tend      to sleep more lightly and for shorter time spans than do younger adults.      This might create a need for spending more time in bed to get enough      sleep, or a tendency toward daytime napping.
  • Previous      sleep deprivation. If you’re sleep deprived, the amount of sleep you      need increases.
  • Sleep      quality. If your sleep is frequently interrupted or cut short, you’re      not getting quality sleep. The quality of your sleep is just as important      as the quantity.

Victorian clockThose first two weeks after Bear’s surgery when I was his caretaker, I rarely enjoyed more than two hours of sleep at a time and there seemed to be no difference between day and night.  I’m not saying this would be true for everyone, but we paid for it dearly.  I ended up in the emergency room needing a breathing treatment to relieve the bronchial symptoms that were making it so difficult to breathe and I just may have brought home a virus for Bear who soon started running a high fever. We were both run down from lack of sleep.  Of course, Bear was already in recuperative mode, but we proved to me how very important sleep is.

When I was first diagnosed with Chronic Kidney Disease almost six years ago, the value of exercise was brought home again and again by my nephrologist.  Until I researched for What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wasn’t clear about why this was important.  This is what I discovered:

I knew exercise was important to control my weight.  It would also improve my blood pressure and lower my cholesterol and triglyceride levels. The greater your triglycerides, the greater the risk of increasing your creatinine.  There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep, and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising.

I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensity your activity.exercising silhouette

Okay, so we know during that 66 days to form a habit, seven to eight hours a night of sleep is one of the habits we should be forming and half an hour of exercise daily is another.  Might as well throw in following the renal diet and avoiding stress as two other habits to get into.  However, considering how long this blog is already, those are topics for another blog.  Who knows?  Maybe even next week’s blog.

KindleAmazon is offering the book in many different countries as well as ours.  It’s also offering the Kindle MatchBook in each of these countries.  Remember?  That’s the program that allows you to buy the digital edition at a 70% discount if you’ve EVER bought a print copy of the book from them.  Why mention it yet again?  It just occurred to me that you can gift the newly diagnosed, their friends and/or family in many different countries! And for those who asked, yes, the book is available on B&N.com, but their digital reader is The Nook, not the Kindle, so there’s no MatchBook discount program on this site.

May you have a Merry Christmas and a Happy Kwanzaa if those are the holidays you celebrate.  Oh my!  Just one more 2013 blog. I think I’ll go back to the earliest ones from this year to see how varied they are.  I’ll bet there’s more than one about the health benefits of coffee.Book signing

By the way, there has been some controversy about the authorship of the poem from which I played upon for the title of this blog, but I’m more than willing to accept Clement Moore as the author of “ ‘Twas The Night Before Christmas.”

Until next year,

Keep living your life!

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

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

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

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

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

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

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

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

“1. Abdominal obesity

2. high blood pressure

3. high blood sugarapple shaped

4. low levels of ‘good’ HDL cholesterol

5. high triglycerides”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!blues

Oh, The Gall!

I thought I’d write about macular degeneration this week since that’s the newest diagnose in my life.  But my daughter’s  Cholecystectomy is taking precedence in my mind, so we can postpone the macular degeneration.  Her what, you ask?  That, my friends, is what the procedure to remove your gall bladder is called. By the way, I asked what it was, too.       photo

This is Nima’s description of how it all started and what the procedure was like:

“At one point or another we’ve all that had that midnight snack of a slice of cold pizza and maybe some juice to wash it down. So when I woke up with severe sharp pain on my right side I didn’t think much of it, except I shouldn’t have eaten that pizza, and where is the Tums?  After two Tums and a hot shower, the sharp pain continued all around the middle of my back to the middle of my front right side. I finally thought to myself, ‘Don’t be stupid. You have a family history of CKD, and one family member who passed stones a few years back. Better to be safe than sorry, get it checked.’

Off to the ER I went. After I described my symptoms to the first year resident, she picked up very quickly on the fact it could be gallstone/gallbladder related due to the side of the pain (right) and asked for a urine sample, as well as ordering blood work, and a sonogram of that area. I was also given an IV, morphine drip for pain (which honestly did nothing – too much pain- all I wanted to do was rock back and forth or keep walking in circles to help me be in motion so I didn’t have to think about the pain), and eventually antibiotics.

The doctor came back with the results of the blood work to tell me that my white blood count was elevated to 12, an indication the gallbladder was infected. I was finally taken to sonogram. A bariatric first year resident explained I had an impassable 2.7 in. diameter gallstone that was causing blockage in the duct in the front and a bunch of pain. There’d be no way to take it out other than surgery. After meeting with the attending physician, he concurred. He also mentioned that, because the gallbladder was infected, it’d be smart to remove it.

So, I did. I’ll now have to learn an entirely new way to eat (low-fat) as the gallbladder is what processes fat. I’ve learned quickly if I consume the slightest bit of fat, my body’s response is “Um, what the hell are we supposed to do with that?!” and to reject it in a not so nice way. I’ll have to play it smart and step up the exercise and water intake as well to make up for the missing organ and amount of bile that could now possibly be floating in my body because it has nowhere to go. As for pizza at midnight? Well unless, I want another episode like the one I just had, those days are now in my rearview mirror.”

But what do gall stones have to do with chronic kidney disease?  Searching the web only garnered this one article from January, 2009 – that’s four and a half years ago – http://www.ncbi.nlm.nih.gov/pubmed/19352299. The relevant quote is this:

“The prevalence of gallbladder stones in patients with chronic kidney disease is significantly higher than in those without chronic kidney disease. Our findings suggest that increasing age, chronic kidney disease, body mass index > or =27 kg/m {greater than 59 pounds}, metabolic syndrome, and cirrhosis are the related factors for gallbladder stone formation.”

Now think about it another way: you already have a compromised immune system because you have ckd.  Gall stones can cause infection of the gall bladder. As in Nima’s experience, infection causes white blood cell elevation. So you know you have an infection, you might even realize it could be in the bile ducts, too.  But did you check to see if there’s infection in other areas of your body? That would mean you can read your own test results or have the kind of relationship with your doctors – especially your nephrologist – to freely ask questions.

Let’s back track a little since I’m so good at that.  Here’s a picture of the location of the gall bladder. gall_bladder

As for what it does, I went to http://www.nlm.nih.gov/medlineplus/gallbladderdiseases.html.

“The gallbladder is a pear-shaped organ under your liver. It stores bile, a fluid made by your liver to digest fat. As your stomach and intestines digest food, your gallbladder releases bile through a tube called the common bile duct. The duct connects your gallbladder and liver to your small intestine.”

Keep in mind that your liver, the largest organ in your body {the skin is actually the largest organ, but it’s external} is the other organ that filters your blood.  Since your ckd has been diagnosed, your liver is already working harder. Add losing your gall bladder and you’ve got one very hard working – possibly overworked? – liver.

What about the surgery, you ask?  There are two kinds: open which is surgery as we understood it before laparoscopic surgery and laparoscopic surgery.  In the latter kind:

image-07Under general anesthesia, so the patient is asleep throughout the procedure.

  • Using  a cannula (a narrow tube-like instrument), the surgeon enters the abdomen in the area of the belly-button.
  • A  laparoscope (a tiny telescope) connected to a special camera is inserted through the cannula, giving the surgeon a magnified view of the patient’s internal organs on a television screen.
  • Other  cannulas are inserted which allow your surgeon to delicately separate the gallbladder from its attachments and then remove it through one of the openings.
  • Many  surgeons perform an X-ray, called a cholangiogram, to identify stones, which may be located in the bile channels, or to insure that structures  have been identified.
  • If the surgeon finds one or more stones in the common bile duct, (s)he may remove them with a special scope, may choose to have them removed later through a second minimally invasive procedure, or may convert to an open operation in order to remove all the stones during the operation.

After the surgeon removes the gallbladder, the small incisions are closed with a stitch or two or with surgical tape.

Thank you for this information Society of American Gastrointestinal and Endoscopic Surgeons at: http://www.sages.org/publications/patient-information/patient-information-for-laparoscopic-gallbladder-removal-cholecystectomy-from-sages/

And that, ladies and gentlemen, is all I know about the gall bladder and gall stones.

Until next week,

Keep living your life!

You, You’re Driving Me Crazy: Dedicated to Vitamin D.

I hereby declare today Vitamin D Day. Why? Well, you see, I had this question from a reader about the conflicting reports on the value of taking supplemental vitamin D.  I had hoped my research would have some kind of defining conclusion.  Hah!  Be prepared to have your head spin.sad face

Last October I read a New York Times blog by Nicholas Bakalar regarding a study questioning vitamin D supplementation. According to University of Aberdeen’s senior lecturer and leader of the study, Helen M. McDonald, “The study actually shows that vitamin D does not protect you against heart disease….”

That sounds straight forward enough.  However, the study also discovered no effects on C-reactive protein [a protein in the blood which may indicate artery inflammation], LDL [low density lipoprotein – the kind that forms blockages in your arteries], HDL [high density lipoprotein which cleans out the blockages just mentioned], total cholesterol [all the fat in your blood], triglycerides [the major form of fat the body stores], insulin production, or blood pressure. Whoa, ladies and gentlemen.  That is quite an array of areas there.  You can find this blog at: http://well.blogs.nytimes.com/2012/10/22/study-questions-benefit-of-extra-vitamin-d/?smid.

Wait a minute.  In November of last year, Washington University School of Medicine published a study in the Journal of Biological Chemistry that indicates vitamin D could prevent atherosclerosis [clogged arteries], an important aspect of heart health, in diabetics. The authors of the study, Dr. Amy E. Riek and Dr. Carlos Bernal-Mizrachi, made a point of saying they did  not know if vitamin D is capable of reversing atherosclerosis in diabetics.  But doesn’t that contradict the previous article’s finding that vitamin D’s effect on diabetes is questionable?  Decide for yourself: plaquehttp://www.eurekalert.org./pub_releases/2012-11/wus0-vdm111312.php. .

In a more germane article printed that same month, Loyola University Health System announced that under the Institute of Medicine’s new guidelines, only 35.4 % of Chronic Kidney Disease sufferers would be deemed as having insufficient levels of vitamin D rather than the 76.5% under the older guidelines. These numbers are based on a survey of patients. Keep in mind that CKD has been linked to low vitamin D levels.

The percentage of healthy people who would no longer be considered as having insufficient levels of vitamin D would also drop by more than half. Here’s the kicker: while it is accepted that vitamin D is needed for your bones, there is a question about its role in “…cancer, heart disease [ that’s what the blog above discussed], autoimmune diseases and diabetes [what the study above deals with]….” What concerns me is that too much vitamin D can adversely affect the heart AND the kidneys.  This  article was a bit more medical in terminology than I’m comfortable with so I’d suggest you take a look at it yourself: http://www.eurekalert.org/pub_releases/2012-10/luhs-n8m101812.php.

In March of this year, the Journal of the American Society of Nephrology published a study stating, “Vitamin D supplements may help maintain kidney function in transplant recipients.”  Okay, so with the new guidelines you may be one of the close to 50% of Chronic Kidney Disease sufferers who no longer need vitamin D supplementation… until you receive a transplant?? Take a gander: http://www.eurekalert.org/pub_releases/2013-03/ason-Ivd032213.php.vitamin d pills

While you read this particular paragraph, keep the first study in mind – the one that decided vitamin D supplemental had no effect on blood pressure. In April, I read a NPR [National Public Radio] blog about The Brigham and Women’s Hospital’s small study with Blacks as their subjects.  This one found that vitamin D may lessen the risks of high blood pressure in Blacks.  Notice none of the other studies mentioned Blacks.  I really like this one because Blacks have a higher incidence of Chronic Kidney Disease and, as we know, high blood pressure is one of the leading causes of CKD. It’s written in laymen’s terms so you might enjoy reading it: http://www.npr.org/blogs/health/2013/04/05/175258469/study-hints-vitamin-d-might-help-curb-high-blood-pressure.Black

Concerning, diabetes, another New York Times blog by the same author as the first one states, ” A new study has found a strong correlations between low vitamin D blood levels and Type 1 diabetes.” Later in the blog, one of the authors of the study made a connection between Type 1 diabetes and other diseases that are prevented by vitamin supplements.  This was published the same month that the first Eurekalert article which stated the opposite was. You can find this one at : http://well.blogs.nytimes.com/2012/11/26/low-vitamin-d-level-tied-to-type-1-diabetes/?smi

While we’re on the topic of diabetes, on February 5th of this year, Nick Tate wrote on the News Max Health site, “New Harvard University research has found that adequate levels of the ‘sunshine vitamin’ cut the odds of developing adult-onset type 1 diabetes by half.” I wonder if he’s using the Institute of Medicine’s new guidelines? And what about the same Institute of Medicine’s claim that vitamin D’s role in diabetes is questionable?  You can read about the study – funded by the National Institute of Neurological Disorders and Stroke – at: http://www.newsmaxhealth.com/Diabetes/Vitamin-Prevent-Diabetes/2013/02/05/id/489047

So now we leave heart disease, Chronic Kidney Disease, diabetes, and transplantation to move down to the knees.  I have never heard that vitamin D can help with arthritic knees, but apparently others have. In July of this year, Medpage Today  referred to an article published on January 8th. It discusses a Brigham and Women’s Hospital “2-year trial [that] contradicts observational studies that had suggested higher levels of vitamin D might slow the progression the disease [knee osteoarthritis].”  Since I am one of the lucky ones (notice the dripping sarcasm) to enjoy this disease, I was surprised to come across this trial.  I do acknowledge the connection between vitamin D and bone health, but never thought of it as something to reverse bone damage.  Want to read the article for yourself?  Go to: http://www.medpagetoday.com/Rheumatology/Arthritis/36757?utm_content=&utm_medium.

This blog is getting too long, so we’ll continue with the vitamin D controversy next week.July 4th

On the home front, nothing much is happening since we’re dealing with Bear’s back issues.  That made for a quiet 4th of July weekend.  None of the kids was available so we made a teeny little bar-b-q just for us… and I was not quite well for three days after.  When you’re on the renal diet, you might be able to indulge a little here or there, but not a whole lot at one time.  Here’s hoping your Independence weekend was a glory of red, white and blue celebration.

Many thanks to Alex Gilman who tried desperately to cook us a dinner that was within my renal diet guidelines without even knowing what they were.  I was very taken with his efforts.

Until next week,

Keep living your life!

To Stress Or Not To Stress

I woke up yesterday morning, threw open the windows, and just listened to the birds singing away while the sun shone right in. I was filled with joy that it was Sunday morning, Bear Bearandmewas right next to me, and I could do that.  Then I realized every morning is Sunday morning for me. I live in sunny Arizona and am retired.  The only stress I have is that which I impose upon myself.

I have heard my four grown daughters talk about the stress in their lives and what it seems to be doing to each of them in different ways.  We’re not talking about life or death stress, rather everyday should-I-or-shouldn’t-I stress.  Should I take the new job?  Should I go out with him?  Should I buy a house?  Should I move out of state?  Even (for me) should we have Italian food catered in for our wedding? You know, the usual – and good since so many of them are associated with joyous occasions – life stresses.

Stress?  Hmmm? What does that do to the kidneys? But wait, maybe it would be more prudent to explore just what stress is first.

According to the Free Online Medical Dictionary, “Stress is defined as an organism’s total response to environmental demands or pressures.” The site goes on to explain the description, causes, symptoms, diagnosis, treatment, alternative treatment, prognosis and prevention of stress.  While this was interesting reading, it’s not quite germane to the kidneys.  You can find all this information at: http://medical-dictionary.the freedictionary.com/stress

Alright.  We have those demands or pressures. (I distinctly remember my stress about whether or not to allow my youngest to attend a preforming arts high school across the bay from our Staten Island house in New York City.  It would mean a bus, ferry, and subway ride each way to the tune of an hour and a half… without me!)

But what is our organism’s total response?  You’ve got to remember we respond the same way whether the stress is positive (I always, without fail, experience a few minutes of stress before I go on stage or the cameras start rolling) or negative (like when we were told we need a new air conditioning system and we realized that meant the honeymoon will have to wait).stress

Ready? First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes (blood sugar) and hypertension (blood pressure) both play a part in chronic kidney disease.

If you still haven’t resolved the stress, additional hormones are secreted for more energy.

Still no resolution?  Not good.  Years, even weeks, of stress can “affect the heart, kidneys  {and doesn’t affecting the heart also affect the kidneys?}, blood pressure  {uh-oh, that also affects the kidneys.} stomach, muscles and joints.”  The comments within the brackets are mine.  Thank you to www.comprehensive-kidney-facts.com/stress-management.html for the rest of the information.

blood pressure 300dpi jpgFor those of you who want more technical explanations, I turned to eHow (I think I’m a little bit of a snob here since I’m surprised when I’m directed there in a medical search). According to www.ehow.com/facts_5929145_effect-stress-hormones-kidney-function.html, “The combination of vasoconstriction {that means ‘the narrowing (constriction) of blood vessels by small muscles in their walls. When blood vessels constrict, the flow of blood is restricted or slowed” http://www.healthscout.com/ency/1/002338.html } and increase in blood volume (because of water retention) raises  blood pressure, which can, over time, translate into chronic hypertension {high blood pressure}.  Persistent water retention as an outcome of prolonged elevations in stress hormones can also produce edema {swelling}.”

And that’s only a part of a total medical explanation.  There’s more that stress does to the kidneys but if you think I explained quite a bit in this part of the explanation, I need to tell you that this was the easiest part of the explanation to understand with some help.

Stress management seems to be part of keeping our already compromised kidneys from deteriorating even more.  Naturally, the next question should be what IS stress management?Book Cover

You’re already exercising half an hour a day (You are, aren’t you?) That’s to control your weight, blood pressure, cholesterol and triglyceride levels. To quote myself from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, “The greater your triglycerides, the greater the risk of increasing your creatinine.”  Me again: “Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger.” So it’s no great surprise that exercise also lowers your blood pressure, even when it’s been raised by stress.

At http://www.holisticonline.com/herb_home.htm, you’ll find dietary suggestions to manage stress.  While I don’t agree with all of them (like caffeine, I am NOT giving up my two allotted cups of coffee a day, no way!  They make me feel far less deprived.) and you need to take your renal diet into account, most of them are well worth adhering to.

Smoking and alcohol (contrary to popular belief) will only increase your stress levels.  I’m wondering if we didn’t get the notion they would decrease stress from the movies or television.

Drinking water, but keeping within your daily fluid limits (mine is 64 ounces, which includes any liquid or frozen liquid such as jello), can also reduce stress as can anything that relaxes you: music, your pet, a warm bath, playing an instrument, etc.

There is stress even with a simple little backyard wedding like ours, which is why I’m so glad to be spending more time than usual with my daughters – a great stress reducer for me – and the new people they’ve been bringing into our lives lately.

Until next week,

Keep living your life!

1885… To The Present

1885 is my favorite year.  Don’t ask me why because I don’t know.  Maybe it’s a reincarnation thing, maybe it’s a time travel thing, maybe it’s not.  All I know is that it draws me like honey draws flies.

These are my wedding shoes.  If they ever arrive, I’ll dye them red to match the sash on my Victorian wedding dress and Bear’s Victorian western vest. (Yep, he has the 1885 fever, too, except he prefers the Western area 1885.)safe_image

Back to the shoes.  They are contemporary yet are in the style of ladies’ 1885 dress shoes – called dancing pumps back then.  Here’s a little no longer secret:  I found them online, then researched and discovered they were the shoes I was looking for.  Sort of like my dress search.

So what does this have to do with Chronic Kidney Disease you ask?  I wondered that myself as I patiently waited for the yard people to show up and clear out the once beautiful bushes and trees we lost to January’s frost.  I always seem to gather ideas for the blog when I’m doing something else.

I know what dresses, shoes, and Western vests looked like in 1885, but not what the face of Chronic Kidney Disease looked like at that time. So I did what I do best: researched. This was one of the few times I didn’t succeed. I tried every combination of search parameters I could think of.  I finally decided to put a time cap on the research. Nothing, nada.

Book CoverThen I did one of those mentally smack your forehead thingies (I tried it in reality once and it hurt!) Of course I was only finding information about transplants and dialysis at that time.  Chronic Kidney Disease wasn’t as yet recognized as a disease.

According to Dr. G. Eknoyan of Baylor College’s Department of Medicine’s Renal Section:

“Nephrology is a young discipline.  Several events contributed to its emergence during the years following World War Two. First was the increasing interest in studies of kidney function and physiology that started as part of the war effort during World War Two and was fostered during the post-war boom by the newly established National Institutes of Health {sound familiar, anyone?} and the flourishing pharmaceutical industry.  Second was the introduction in the mid-1900s of new technologies directly relevant to the care of individuals with kidney disease, specifically dialysis and kidney biopsy.”

You can read the entire article at: http://www.touchbriefings.com/pdf/3342/eknoyan.pdf, although Dr. Eknoyan attributes his information to S.J. Peitzman’s book Dropsy, Dialysis, Transplant, A short history of failing kidneys published by Johns Hopkins University Press in Baltimore in 2007.

It seems sort of silly now, but my heart goes out to all those who needlessly died of the as yet unnamed (and undiscovered) Chronic Kidney Disease in 1885.  Bringing in Bear’s love of all things Western, the ludicrous part of me wonders if it was all that buffalo meat that exacerbated the disease.

I was astonished to discover that The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI ™) was not put into place until 1997 and then updated only five years later in 2002.  No wonder I had so much trouble even attempting to discover the face of Chronic Kidney Disease in 1885.  I was over a century too early.

stages chartThis is where you’ll find all their guidelines: http://www.kidney.org/professionals/KDOQI/guidelines_commentaries.cfm

There is so much information on this site about CKD in conjunction with diabetes, hypertension, diet, age, treatment, and dyslipidemia (high cholesterol) – to mention just a few of the categories – that it would make sense to urge you to explore the site yourself instead of attempting to explain it.

I was surprised that their chart does not differentiate between stages 3A and 3B as The Renal Association does. I was just a bit perturbed at one of The Renal Association’s statements, although I recognized its validity: “Most patients with Stage 3 CKD are older, and only a minority go [sic] on to get more serious kidney disease.” The older part didn’t thrill me, but the” only a minority” part sure did. This information is at: http://www.renal.org/whatwedo/InformationResources/CKDeGUIDE/CKDstages.aspx

According to Wikipedia at http://en.wikipedia.org/wiki/Chronic_kidney_disease, “British guidelines distinguish between stage 3A (GFR 45–59) and stage 3B (GFR 30–44) for purposes of screening and referral.” Yet, my nephrologist, who is not British and practices right here in Arizona, is the one who explained to me that I am Stage 3A.

I’m convinced that the renal diet plays a very large part in keeping dialysis at bay. I’m also delighted at how easy it’s become to stay within the guidelines of the diet.  Last night, for no earthly reason except we wanted to, we went to see ‘Buddy’ at The Arizona Broadway Theater, which is a dinner theater. I made exactly two substitutions to the printed menu, skipped dessert and was perfectly within my guidelines as to portion size, vegetable and protein restrictions, and carbohydrate restrictions, too.

OLYMPUS DIGITAL CAMERA

I seem to forget to talk about the book in my latest blogs.  I neglected to mention that I introduced the representatives of the Gila River Indian Community to the book at last week’s Southwest Nephrology Conference, as well as having the opportunity to give a copy to the representatives of The Northern Arizona Council of Renal Dietitians.  They’re the ones who developed the renal diet I follow as a patient of AKDHC {Arizona Kidney Disease and Hypertension Center}.  As a matter of fact, Crystal Barraza, the nutritionist associated with AKDHC, contributed to the book.

While this month is National Kidney Month, World Kidney Day is this Thursday, March 14th.  Why not consider donating a kidney?

Until next week,

Keep living your life!

Blue Monday – But Only When It Comes To Sugar

If you read the Facebook page, you already know I received good news when I visited my primary care doctor, the ever educating Dr. H. Zhao of Deer Valley Family Practice here in Phoenix. The visit was for her to more carefully read the results of the blood tests than I am capable of since I’m not a doctor. I take these tests quarterly because I was prescribed Pravastatin which might have an effect on the liver.

By the way, pravastatin is used with hyperlipidemia (high cholesterol). Luckily for me, I have had no side effects from this drug.  As with every other patient taking the drug, it wasn’t even prescribed until after we had tried dietary changes, exercise and weight reduction.  My body seems to have a mind of its own (love the juxtaposition of body and mind), and paid no attention to any of my efforts; hence, the drug regimen.

That’s a pretty long involved explanation of why I was in Dr. Zhao’s office at all.  The good news is that with all my complaining – and there’s been plenty – about the exercise and renal diet, my eGFR (estimated glomerular filtration rate) went up to 60 from 50.  That is borderline between stage 1 or normal kidney function and stage 2 or mild chronic kidney disease. This, after three years of being at stage 3 or moderate ckd. I was so floored I was speechless, not at all usual for me.

Of course, along with the good came the bad.  Funny how it always works that way.  It seems my A1c, a blood test which measures how your body handles sugar over a three month period, had risen again.  This has been on a very slow incline for quite a while.  Now it’s 6.3.  At 6.4, I officially have type 2 diabetes.

What is that specifically?  Type 2 is the type that can be controlled by – surprise! – life style changes, while type 1 is insulin dependent or the kind that requires a daily injection.  But wait a minute!  I already limit the sweets (sugar) and make it a point to exercise, so how could this be?

When I asked Dr. Zhao to help me with this, she was able to print out material about diabetic exchanges for meals. I also made an appointment with Crystal Barrera, my nutritionist at Arizona Kidney Disease and Hypertension Center, so she could help me combine the renal, hyperlipidemia, diabetic, and hypertension diets I need to follow. But that’s later on this month. Meanwhile, let’s deal with the material I was given.

Lo and behold, sweets are only one aspect of the diet. I hadn’t realized carbohydrates had so much to do with diabetes. It seems they turn into sugar. Now that I know this, it makes perfect sense.  I just never made the connection. I learned that too many carbohydrates at the same time raise the blood sugar.

Well, I got myself another eye opener as I read.  I always thought of carbohydrates as starches – bread, cereal, starchy vegetables and the beans that I can’t eat anyway since they’re not on the renal diet. But I learned they are also milk and yoghurt (I have never been so thankful to be lactose intolerant), and fruit.

I wasn’t terribly upset since I’m already limited to six units of starches, three of vegetables (starchy or not), three of fruit and one of dairy.  Uh-oh, doesn’t that mean I was already being careful about my food intake? It was a struggle for this miller’s grand-daughter to keep within the bread limits.  What else was I going to have to struggle with?

It turns out the limits for each of the categories of food in the diabetic diet is more liberal than those on the renal diet.  For example, Sunday morning I make gluten free, organic blueberry pancakes. They’re simple, quick and tasty. Bear uses butter and syrup (got some terrific huckleberry syrup for him when I was in Portland, Oregon, for the Landmark Education Advanced Course in June, but I like them plain.) According to the diabetes exchange, one of these counts as a starch (1 4-inch pancake about ¼” thick) and ½ of a fruit exchange (one-half cup of canned or fresh fruit). Wait, there’s more.  I used 1 teaspoon of extra virgin olive oil which is a fat exchange. Hmmmm, this is simply not that different from counting units for the renal diet.

Ah, so the diabetic exchange meal is not that much of a problem for me, it’s combining the restrictions of the four diets I need to follow. I’ve already decided to follow the lowest allowable amount of anything.  For instance, the diabetic exchange allows 2,300 mg. of sodium per day while the renal diet only allows 2,000 mg.  I stay well under 2,000 mg.

I’m beginning to see that I can figure out how to do this myself, but I am so glad to have my nutritionist to verify my conclusions.  You know, the government pays for your nutritionist consultation once a year if you have chronic kidney disease.  It’s not a bad idea to make an appointment.  You may surprise yourself by not being aware of new dietary findings about the renal diet or discovering you’ve accidentally fallen into some bad dietary habit.

Also, as expected, exercise is also important if you (or I) have diabetes. It helps keep your blood sugar levels under control.  The recommendation is 30 minutes five times a week.  I’m already striving for 30 minutes a day every day and don’t want to let that go.  I’m hoping to make that a habit.

I am SUCH a writer!  One of my first thoughts after I was told about the A1c level was, “Maybe I should write a book about type 2 diabetes.”  As far as the ckd book, I was just informed I have blog readers in China who are ordering the book.  Let’s see if we can disseminate the information all over the world.  Here’s to no more terrified newly diagnosed patients!

Until next week,

Keep living your life!

Fat Day

I am being thrust into the 21st century whether I like it or not.  Thank goodness, Bear gave me an iPad for my 65th birthday because my laptop is not so functional these days and my big guy needs all kinds of things installed on it now that it’s fixed. This is a first for me, but I’m one paragraph in and so far, so good. Welcome to iPad blog (#1?).

I feel fat and frustrated today, sort of like this picture: Image  I could do the analyzing thing and decide that the frustration is displaced from not being able to do anything about my buddy’s decision to end her life or my cousin’s running out of options to save hers, but I know I have no control over these tragedies.

I feel fat and frustrated because I know what to do to lose weight, do it and still gain.  It got so that I started to wonder if exercise were worth it.  And counting calories?  That went out the window.  I never did get to the point of abandoning the renal diet, though.  That’s become sacrosanct, the way I wish losing weight was.

Following my usual method when I have a problem, I started researching.  I remembered blogging about brown fat cells, but these were only recently discovered and no one knows how to access them yet.  In case you forgot, brown fat cells gobble up other fat cells or something like that.  I’d have to revisit the blog about them to be more specific, but I fear if I leave this page it will disappear.  This is all so new to me.  You should be able to find it quickly since the computer savvy Ms. Nima Beckie categorized the blogs.  How nice for me to have family who can freelance on the payroll.

I found some information that won’t help me lose weight but makes the frustration lessen.  Lucky for me that I just bought a Groupon for dance lessons and that my youngest daughter, Abby Wegerski, runs Sustainable Blues at The Blooze Bar on 32 Street  ( Sunday nights free lesson at 5 with live band after).  There’s exercise I at least adore and it’s clear to me despite all my belly aching, exercise is very much in my future.

EurekAlert’s article about long term weight loss after menopause gave me pause (sorry, I couldn’t resist.  I think I’m feeling better already.) Obviously I’ve been through menopause, but not so obviously had no idea that because of that my resting metabolism has decreased, so has my losing weight and keeping it off ability despite having no sugary drinks, fried food or desserts.  Well, drastically cutting down on desserts. It helps that I know I’m lactose intolerant, but I certainly am having trouble working gluten sensitivity into my renal diet. You can find this article at: http://www.eurkalert.org/pub_releases/2012-08/ehs-ilw082212.php.

That wasn’t enough for me though.  I wanted to feel that I was like everyone else so I searched some more.  I should mention here that belly fat holds a great deal of my excess weight or, at least it looks that way to me. Why Medical News Today’s article “Belly Fat Increases Risk Of Death Even In People Of Normal Weight” should be comforting is beyond me, but it was and actually lessened my frustration a bit. The article cites a Mayo Clinic study in which it was suggested, “that people of average weight who have extra fat in their stomach have a higher risk of dying than obese people.” Am I interpreting this to mean it’s better to be obese?  I sure hope that is not the case.  The address for this article is: http://www.medicalnewstoday.com/articles/249506.php.

A few things became clear while writing this blog.  I am trying to combine the renal diet with those for high cholesterol, lactose intolerance, and gluten sensitivity. I am not succeeding.  My failure here is probably the cause of my weight gain so I’ll see my renal nutritionist for help, keep on exercising (see you there, Abby) and go right back to counting calories.  Problem solved.

Did you know the book is available in India?  I didn’t. I thought it was only available here and in Europe.  Great work on Amazon’s part.  It’s also available on B&N.com, should you have a Nook.

Until next week,

Keep living your life!Image

The State of The Mind Address

Monday again… and I, for one, am so glad to see it.  It’s blog day and I’ve got a lot to say today.  I’ve been down – well, as down as my optimistic nature allows – with all the medical issues surrounding me the last few weeks. My very, very dear friend and sometimes ‘sister’ has been diagnosed with stage IV bowel cancer, diabetes, hypertension, depression, and anxiety. One of my children is being successfully treated for depression and anxiety, but has developed a pre-diabetic condition and elevated cholesterol.

So, what did I do?  What else?  I researched mental life’s effect on physical health. I found information I’d always taken for granted proven scientifically and some – like the different types of smiles – I hadn’t thought about.

In EurekAlert!’s July 30th article, I zeroed in on the following.

Poor mental health linked to reduced life expectancy

“There is a possibility that mental health problems may be associated with biological changes in the body that increase the risk of diseases such as heart disease.

In this study, approximately a quarter of people suffered from minor symptoms of anxiety and depression, however, these patients do not usually come to the attention of mental health services. The authors say that their findings could have implications for the way minor mental health problems are treated.”

Of course there’s more to the article, which you can read at: http://www.eurekalert.org/pub_releases/2012-07/wt-pmh073112.php

It made sense to me.  Another one of my children had troublesomely high cholesterol when she was agonizing over a major life decision three years ago.  She took her medication, ate the right foods and made certain she exercised and it kept right on rising.  Fast forward to a few months after she made and acted upon her decision. She faced her fear (thank you, Landmark) and returned to her doctor for a complete physical even though she had stopped taking the medication and ignored her diet. As a dancer (she IS my daughter), exercise wasn’t a problem. I’m so glad she did go back to the doctor.  There is no sign of elevated cholesterol.  Why?  I’m laying it on the fact that she’s happier now.

I tend to smile quite a bit and look for reasons to smile even when life seems hard.  I wondered if that were helping me with my own health and, if so, would it help others. Then I located this Aug. 1, Medical News Today article:

Smiling Reduces Stress And Helps The Heart

“A new study suggests that holding a smile on one’s face during periods of stress may help the heart. The study, due to be published in a forthcoming issue of Psychological Science, lends support to the old adage ‘grin and bear it,’ suggesting it may also make us feel better.”

The article goes on to distinguish between the different kinds of smiling.  You can find it at:

http://www.medicalnewstoday.com/articles/248433.php.

I found something unexpected to be happy about this week: Medical ID Fashions.  If you remember (and even if you don’t), I’d taken them off my blog roll because I ordered one of their medical alert bracelets and when it was delivered, there was a note in the box saying it could not be submerged in water.

I have osteoarthritis and could not (oh, all right, so I just didn’t want to) spend precious minutes a day struggling to get it off and on before I hit the shower. I just wanted something pretty that I could put on and ignore. I emailed the company about not warning the consumer that it wasn’t waterproof BEFORE the bracelet was purchased and received.

I heard nothing for months on end. Then the bracelet started to tarnish and I cleaned it.  Mistake!  Seems it could not tolerate the cleaning supplies I was using because there was some kind of protective coating over the brass and copper parts of it – a coating I knew nothing about since there was no information about cleaning on the website nor was any sent with the bracelet.

Again I sent an email.  This time I got a reply in less than 24 hours with a request to call them.  When I did and explained the problem, they offered to replace the bracelet with a waterproof stainless steel one for the difference in the price of the two bracelets.  I also noticed the websites now mentions which bracelets are waterproof although nothing is included about NOT being waterproof in the other bracelets’ descriptions.  There’s also still a lack of information about how to clean the bracelets.

I have already return mailed my old, ruined bracelet (who knew trying to be neat and clean could cause such problems?) and PayPal-ed the $20.  Now I wait. So I won’t have the pretty silver-copper-brass bracelet I wanted. I’ll have a waterproof, cleanable stainless steel one instead.  It may not be stylish but it could be a life saver.

I’m starting to see sales in England!  That’s something else to make me smile.  And thanks to AKDHC’s flier campaign, I’m starting to receive telephone calls from people who want the book but don’t have or know how to use a computer. I have a bunch of books I keep in the office for those without computers.  They can also be personally inscribed, if you’d like.  Just send me an email at: myckdexperience@gmail.com.

Time to get to researching cataract surgery and ckd.  Mine are scheduled for August 14th and September 4th.

Oh, got an email from a reader whose tests showed she had NO ckd, although she’d been diagnosed at stage 3.  Being a smart one, she retook the tests.  The first set of tests had false results.  No one knows quite how that happened, but if you should find you suddenly have test results, good or bad, that are totally unexpected, please have them redone.  We all want NOT to have CKD, but need to pay attention to it if we do.

Until next week,

Keep living your life!

Clearing My Head

Today’s the day to bring up those isolated thoughts roaming through my mind.

But first: happy birthday to Lara, she of the bunnies {the one I introduced on this blog – Temperance – now has a buddy, Seely} and one of the five lovely daughters in this blended family.  It’s quite a coincidence how their ages step: each one is just about a year older (or younger, depending upon how you look at it) than the others.  May you have many more healthy, happy, fun birthdays Lara.

Questions have been raised about pertussis (whooping cough) which I hope to have answered for you a.s.a.p.  Parts of Texas and Seattle, Wa., already have epidemics so I’m in contact with the CDC experts awaiting an explanation as to why CKDers need to be extra careful about this disease – if, indeed, we do. Thank you to Laura for bringing up the question.

Some of you have been asking for a way to check on the interactions of any medications you may be taking. After a bit of researching, I’ve found just such a function at: http://healthtools.aarp.org/health-encyclopedia?cmp=NLC-HealthEng-CTRL-82510-LONG-ENCYC.  Look on the upper right side of the page.  I don’t think this one is terribly medical in its explanation since it is AARP (American Association  of Retired People) rather than a physician’s site.  Let me know how you like it if you decide to give it a shot.

I pulled up this article from last Halloween (hmmm, is the date relevant?) as an example of why I have so many doubts about drugs, drug companies and just what each drug can do despite the fact that we sometimes need the drug.

Controversial Cholesterol Pill Vytorin Shows Promise For Kidney Patients

 by

 October 31, 2011
 
[This is me: the first part of the article refers to a television advertisement demonstrating that your high cholesterol may be caused by genetics, bad habits or a combination of both.]

Remember Grandpa Frank?

Way back in 2008, the ad above ran in heavy rotation on TV during the heyday of Vytorin, a cholesterol-lowering pill that claimed to fight both genetics and bad habits.

Soon after the ad had appeared, oh, say thousands of times across the country, the Food and Drug Administration asked the company to revise the ads with Grandpa Frank and other relatives because the ads didn’t reveal a study showing Vytorin wasn’t any more effective than simvastatin, a generic cholesterol medicine that is one of Vytorin’s components.

Later that year there was more bad news for Vytorin — and fear among patients — when a study suggested Vytorin raises the risk of cancer slightly. Sales fell from a peak of $5 billion a year to $2 billion last year.

None of this caused the FDA to change its view of the safety of Vytorin. The agency even issued a statement in 2009 essentially exonerating Vytorin of the cancer risk.

Now, Merck, the maker of Vytorin, is looking to regain some of the lost sales of the drug by touting its use in people with chronic kidney disease.

A new FDA analysis shows Vytorin lowered the relative risk of heart attacks and strokes by 22 percent among CKD patients in the relatively early stages of disease — before they need dialysis. For those with more severe, later-stage disease, the drop was 6 percent.

The FDA analysis also failed to find any increase in cancer or cancer deaths in the 20,000-plus patient study.

Merck is seeking FDA approval for use of Vytorin in CKD patients of which there are 26 million in the U.S. alone, according to the National Kidney Foundation.

A committee of independent advisers to the FDA will go over the data for and against Vytorin at a meeting Wednesday.

You can read the article at: http://www.npr.org/blogs/health/2011/10/31/141880804/controversial-cholesterol-pill-vytorin-shows-promise-for-kidney-patients?ft=1&f=1027

I’ve got questions:

1. Why is Vytorin, rather than its generic form –  simvastatin – being touted?  Didn’t the article state that this component of Vytorin was just as effective?

2. What happened to the study suggesting that Vytorin raises the risk of cancer slightly?

3. Since I found this on the official FDA site for Vytorin at Drugs.com, why isn’t it mentioned in the article? (http://www.drugs.com/pro/vytorin.html) ” In patients with chronic kidney disease and estimated glomerular filtration rate <60 mL/min/1.73 m2, the dose of Vytorin is 10/20 mg/day in the evening. In such patients, higher doses should be used with caution and close monitoring.”
 
4. Where is there mention of further studies discussed in the FDA’s report: “With all the controversy surrounding ezetimibe in the past 18 months, the cardiology community anticipates the results of IMPROVE-IT, the large clinical-outcomes study chaired by Dr. Eugene Braunwald of the TIMI Study Group and cochaired by Dr. Robert Califf  (Duke Clinical Research Institute, Durham, NC). The study will compare simvastatin 40 mg plus ezetimibe 10 mg with simvastatin 40 mg alone in 18 000 patients with a recent acute coronary syndrome. Those results will be available in 2012.
 
I do not mean to attack this particular drug from this particular company, but am using this article as an example of just how unsure I am about what we are being told about the drugs we use and how contradictory the information about these drugs can be.
 
On a happier note, did I tell you that I decided to go to my graduation?  I have earned a high school diploma, Bachelor of Arts, and Masters degree – not to mention the numerous certificate programs I’ve completed – (okay, okay, I know I could be  the poster child for life long learning).  This time, it was an Academic Certificate in Creative Writing from Rio Salado Community College and I realized this might be my last opportunity to attend one of my own graduations, as opposed to being part of or attending others’ graduations. I must say this was such an exhilarating, inspiring experience!  I urge you not to ignore your own milestones.  Take every chance you can get to celebrate yourself. This is my younger daughter, Abby, and me right after the ceremony.   
 
Until next week,
Keep living your life!

Bedtime is Best

This is what early stage CKD looks like

Ladies and Gentlemen, welcome to the first post of 2012.  Here’s hoping you have the very best year you’ve had to date.

Dr. Kevin Pho started my new year right by posting an except from the book at  http://www.kevinmd.com/blog/2012/01/chronic-kidney-disease-patient-perspective.html which is the address for his KevinMD.com blog.  I am constantly overwhelmed by the kindess of the medical professionals in helping me with my quest to get the book into the hands of every newly diagnosed CKD patient.

I’ve posted about taking cholesterol medication at night and am doing so myself.  Then I ran across this article from MedicineNet.com and will explore whether or not to also take hypertension medication at night.  It all makes sense to me, but I would suggest you talk it over with your nephrologist before you make any changes in your medication taking regiment.

 

Blood Pressure Drugs at Bedtime May Cut Heart Risk

                View the High Blood Pressure (Hypertension) Slideshow Pictures
 
 
 

Latest High Blood Pressure News

Study Suggests Benefits to Taking Blood Pressure Drugs Before Going to Sleep

By Kathleen Doheny WebMD Health News

Reviewed by Laura J. Martin, MD

Oct. 27, 2011 — Taking at least one blood pressure medicine at bedtime cuts the risk of heart problems, according to new research.

The study also shows that participants taking at least one blood pressure pill at bedtime had lower blood pressure while asleep.

Earlier studies have suggested that bedtime dosing of at least one blood pressure medication may help control blood pressure. But the new study is believed to be the first to look at whether the timing makes a difference in terms of heart attacks, strokes, and death.

Ramon C. Hermida, PhD, director of the bioengineering and chronobiology labs at the University of Vigo in Spain, studied 661 people with both high blood pressure and chronic kidney disease.

“Taking blood-pressure-lowering medication at bedtime, compared to [taking] all medication upon awakening, not only improved blood pressure control, but significantly reduced the risk of cardiovascular events,” Hermida says in a news release.

The research appears in the Journal of the American Society of Nephrology.

Timing of Blood Pressure Medicines

Hermida’s team asked half of the men and women to take all their blood pressure medicine when they got up in the morning. On average, each person took two medicines. Many took more than three.

The researchers asked the other half to take at least one of their blood pressure medicines at bedtime.

They measured blood pressure by using 48-hour ambulatory monitoring at the start of the study — not just a single daytime measurement used in most earlier studies. They also measured blood pressure three months after any treatment changes or, at the least, every year.

The researchers followed the men and women for about five and a half years. They looked to see which heart problems developed. They tracked death from any cause and from heart disease or stroke.They also tracked heart attack, angina, heart failure, and other problems.

More than half of those with chronic kidney disease also have high blood pressure, according to the National Kidney Foundation. High blood pressure increases the risk of the kidney disease worsening. Overall, one in three U.S. adults has high blood pressure, according to the researchers.

Bedtime Dosing of Blood Pressure Medicine

Those who took at least one blood pressure medicine at bedtime had lower nighttime blood pressure while asleep. They were also more likely to have overall good control of their blood pressure.

The bedtime group was one-third as likely to have heart and blood vessel problems such as heart attack, stroke, or heart failure, the researchers found.

Improved overnight blood pressure with bedtime dosing had a real benefit. Each 5-point drop in sleep-time blood pressure was linked with a 14% reduction in risk for heart attack, stroke, or heart failure.

“Cardiovascular event rates in patients with hypertension can be reduced by more than 50% with a zero-cost strategy of administering blood pressure-lowering medications at bedtime rather than in the morning,” Hermida says in a news release.

Why Blood Pressure Drugs Work Best at Bedtime

Hermida tells WebMD that some of the body’s blood pressure control systems are most active while we sleep. So medicines designed to control those systems work better when taken close to the time when the systems are activated most fully.

The study results ”make absolute sense to me,” says Robert Graham, MD, MPH, an internist and director of residency research at Lenox Hill Hospital. Graham, an assistant professor of medicine at New York University, reviewed the study findings for WebMD.

”Certain medications have the greatest effect on the body while we sleep,” he says. Indeed, bedtime dosing of blood pressure medications recently has been a hot topic among experts.

Graham has been prescribing blood pressure medicines to be taken at bedtime for years, he says, as it seems to help with the top side effects of blood pressure medicine: fatigue and drowsiness.

“If you do have high blood pressure, and have a hard time getting it [down to your] goal, maybe you should talk with your doctor about changing the time [you take the medicine],” he says.

SOURCES: Journal of the American Society of Nephrology, published online Oct. 24, 2011.Ramon Hermida, PhD, director, bioengineering and chronobiology labs, University of Vigo, Pontevedra, Spain.Robert Graham, MD, MPH, director of residency research, Lenox Hill Hospital; assistant professor of medicine, New York University. ©2011 WebMD, LLC. All Rights Reserved.

You can find the original article at: http://www.medicinenet.com/script/main/art.asp?articlekey=151006#

Many, many hopes for a happy new year.  Join us for the upcoming TwitterChat on Jan. 9 from 8-9 EST at #LibreChat.  If you’re local, schedule in the book signing at Bookman’s in Mesa on Saturday, Jan. 14 from 1-3.  I really enjoy meeting my readers and their friends and family.  One person seems even more interesting than the other!

Until next week,

Keep living your life!