Decisions, Decisions

A reader asked me how I choose the articles or studies I include in the blogs. Now you’ve got to remember that researching and I go way back. I was fortunate in that Research Writing was my favorite course to teach before I retired as a community college instructor. I loved it.

I was going to give you my take on researching when I stumbled across Dr. Alicia White’s piece on the United Kingdom’s National Health Services site at https://www.nhs.uk/news/Pages/Howtoreadarticlesabouthealthandhealthcare.aspx. She’s already written what I would have, so I’m dedicating today’s blog to that. I have not reproduced all of it only because I don’t have the room in the blog for that. Oh, those are not typos; they’re the UK spelling. Take it away, Dr. White:

If you’ve just read a health-related headline that has caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick), it’s always best to follow the Blitz slogan: “Keep Calm and Carry On”. On reading further, you’ll often find the headline has left out something important, such as: “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumours eventually (study funded by The Association of Tea Marketing).”

The most important rule to remember is: don’t automatically believe the headline. …, you need to analyse the article to see what it says about the research it is reporting on….

Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article touts a treatment or some aspect of your lifestyle that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, then treat it with a lot of caution. The same applies to research that has yet to be published.

Is the article based on a conference abstract?

Another area for caution is if the news article is based on a conference abstract. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinised by experts in the field. Also, conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. …

Was the research in humans?

Quite often, the “miracle cure” in the headline turns out to have only been tested on cells in the laboratory or on animals. … Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t…..

How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical “power”, and are also more susceptible to finding things (including things that are wrong) purely by chance. … When it comes to sample sizes, bigger is usually better. So when you see a study conducted in a handful of people, treat it with caution.

Did the study have a control group?

…. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. …

Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/exposed group and some people to be in the control group. This is what happens in a randomised controlled trial (RCT) and is why RCTs are considered the “gold standard” for testing the effects of treatments and exposures. … Without either, retain some healthy scepticism.

Did the study actually assess what’s in the headline?

…. For example, you might read a headline that claims: “Tomatoes reduce the risk of heart attacks.” What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also have some impact on heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. Therefore if a news story is focusing on a health outcome that was not examined by the research, treat it with a pinch of salt.

Who paid for and conducted the study?

This is a somewhat cynical point, but one that’s worth making. The majority of trials today are funded by manufacturers of the product being tested – be it a drug, vitamin cream or foodstuff. This means they have a vested interest in the results of the trial, which can potentially affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. However, it’s worth seeing who funded the study to sniff out a potential conflict of interest….

Many thanks to Dr. White for her explanations.

Here we are in the middle of madness, holiday madness that is. Of course, that means we need to remind ourselves to slow down and de-stress. Exercising is one way to de-stress. We all have different ways to do that. The important thing is to do it… and stick to your renal diet if you follow one.

To those of who you celebrate Chanukah, I wish you a happy and a healthy first night tomorrow night. We’ll be lighting the Menorah along with you. It’ll be hard not to eat the chocolate gelt (money), but you can do it.

Until next week,
Keep living your life!

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Taming the Wild Weed

I know someone who is a kidney donor. That’s actually how we met. I went to a conference to learn what I could learn and she was there at the invitation of the presenters. I was drawn to her right away not knowing who she was or why she was there… something about her magnetic personality, I think. That was years ago and since then I’ve attended her social media workshop and followed her closely on Instagram. Now she’s involved with medical marijuana. That got me to thinking.

So I did a little searching. Back in 2013, the National Kidney Foundation answered a reader’s question in their Ask the Doctor blog by responding more to the smoking than the marijuana:
“Smoking is not good for any person. Smoking is not safe for any person. I know of no specific ill effects of marijuana on the kidney.”

It seemed to me something must have been discovered about medical marijuana and chronic kidney disease in the last four years, so I kept digging and found this 2014 article from Phoenix New Times at http://www.phoenixnewtimes.com/arts/can-i-get-a-medical-marijuana-card-for-chronic-kidney-disease-6577499:

“Medical-grade cannabis can help with pain management, but there are still alternating schools of thought as to whether weed helps or hurts the kidneys. Claims that marijuana injures the kidneys often point to smoking as a damaging factor, but there are alternative methods of ingesting cannabis, including vaporizing, tinctures, and infusing the drug into food.

Additionally, a joint study by the University of Calgary and the University of Alberta concluded that, ‘Even small improvements in symptoms with the use of THC: CBD [cannabinoids, the active ingredients in cannabis] in patients with difficult-to-treat symptoms may be clinically meaningful.’

It seems, if you avoid smoking it, much more evidence exists that cannabis can help with the side effects of CRD, including nausea, loss of appetite, and weight loss.”

CRD means Chronic Renal Disease, an alternative name for CKD.

Well, that’s a bit more informative, but still, three years old. By now I was curious to know how marijuana worked in the first place. United Patients Group at https://unitedpatientsgroup.com/resources/how-medical-marijuana-works had the answer and the date on their site was only last year.

“Major Cannabinoids in Medical Marijuana

What THC Is and Its Effects

THC stands for delta-9-tetrahydrocannibinol. It is probably the best known cannabinoid present in medical marijuana. Physically it acts as a muscle relaxant and anti-inflammatory and psychologically it acts as a stimulant. This makes medical marijuana strains high in THC a good choice for patients who need relief while also to remain alert and active.

THC in medical marijuana acts in the following ways:
• anti-epileptic
• anti-inflammatory
• anti-depressant
• stimulates appetite
• lowers blood pressure
• apoptosis (self induced cell death)

What CBD Is and Its Effects

CBD stands for cannabidiol. Cannabidiol actually reduces the psychological effects of medical marijuana. For most patients, a strain that has high THC and high cannabidiol will have fewer “mental” effects and more physical ones. High cannabidiol medical marijuana strains, like Blueberry and Harlequin, are especially effective for illnesses with strong physical symptoms.

Cannabidiol’s effects include:
• reduced pain
• reduced anxiety
• reduced nausea
• sedative effects
• anti-convulsive
• anti-schizophrenic
• arrests the spread of cancer

What CBN Is and Its Effects

CBN is cannabinol, not to be confused with Cannabidiol. Cannabinol is very similar to THC, but has less psychological effects. It is produced as THC breaks down within the medical marijuana plant. High THC will make cannabinol’s effects stronger, and very high cannabinol concentrations can produce undesirably strong head highs.

Cannabinol levels tend to be high in medical marijuana strains like Strawberry Haze and Blue Rhino, which can be particularly helpful for:
• lowering pressure in the eye (such as with glaucoma)
• analgesic
• anti-seizure

What CBC Is and Its Effects

CBC stands for cannabichromene. Cannabichromene’s main action is to enhance the effects of THC. High cannabichromene levels will make a high-THC medical marijuana strain much more potent.

Cannabichromene working together with THC is known to be a:
• sedative
• analgesic
• anti-inflammatory

What CBG Is and Its Effects

CBG is an abbreviation for cannabigerol. Cannabigerol has no psychological effects on its own, and is not usually found in high amounts in most medical marijuana. Scientists believe that cannabigerol is actually one of the oldest forms of cannabinoids, meaning it is essentially a “parent” to the other cannabinoids found in medical marijuana. It also has anti-microbial properties.

Cannabigerol has physical effects such as:
• lowering pressure in the eye
• anti-inflammatory
• sedative
• sleep assistance

Combining Strains

Alone, none of the five major cannabinoids are as effective as when they work together. These five cannabinoids also work with the minor compounds in marijuana, and this is probably one reason that medical marijuana replacements like Marinol do not work very well.

Professional medical marijuana growers can analyze their medical marijuana strains to breed and grow medication for patients with the desired range of levels of each major cannabinoid. Using this knowledge of what each compound does helps medical marijuana pharmacists, or budtenders, find the right combination for patients to treat specific conditions and find maximum relief.”

I am not at a point where I would consider medical marijuana since my only symptoms are occasional brain fog and tiredness. Should I be experiencing the kind of pain some CKD users do, I would revisit this decision but I’d have to keep in mind that using this substance could hurt my chances of a transplant.

According to Joshua L. Rein, DO and Christina M. Wyatt, MD of the Division of Nephrology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY as stated in their research study at http://www.ajkd.org/article/S0272-6386(17)30810-7/, as of this year:

“Twenty-nine US states have established medical marijuana programs, 8 of which have also legalized recreational marijuana, and Canada is expected to legalize recreational marijuana in 2018. Advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) are chronic conditions with significant associated morbidity and mortality.”

Don’t get confused. Medical marijuana is not a cure for CKD and is not suggested as one. However, should you have need of pain relief, it may offer you some… IF you live in a place where it is legal and IF your doctor thinks it’s a good option for you.

Until next week,
Keep living your life!

Giving Thanks

Thursday is the American Thanksgiving. This is what we were taught in grade school when I was a child:

“In 1621, the Plymouth colonists and Wampanoag Indians shared an autumn harvest feast that is acknowledged today as one of the first Thanksgiving celebrations in the colonies. For more than two centuries, days of thanksgiving were celebrated by individual colonies and states. It wasn’t until 1863, in the midst of the Civil War, that President Abraham Lincoln proclaimed a national Thanksgiving Day to be held each November.”

Thank you History.com at http://www.history.com/topics/thanksgiving/history-of-thanksgiving for that information.

Thanksgiving is celebrated in one form or another all over the world since it is basically a celebration of the harvest. For example, Canadians celebrate theirs on the second Monday of October since the harvest is earlier there. Then there’s China’s Mid-Autumn Moon Festival, Korea’s Chuseok, the Liberian Thanksgiving, Ghana’s Homowo Festival, and the Jewish Sukkot.

One thing all the different forms of Thanksgiving worldwide have in common is the delicious danger of overeating… and that is not good for our kidneys (no matter how scrumptious the food is). This report – which deals with just that topic – popped up on my news feed the other day. The source is Baylor College of Medicine at https://www.bcm.edu/news/kidney/overeating-holidays-bad-for-kidneys.

“‘The body absorbs nutrients from the gut and then the liver metabolizes them. Whatever is left that can’t be used by the body is excreted by the kidneys,” said Mandayam, associate professor of medicine in the section of nephrology. “The more you eat, the more you deliver to your kidneys to excrete, so eating a lot of substances that are very high in proteins or toxins can put a strain on your kidneys because they now have to handle the excess calories, toxins or proteins you’ve eaten.

During holidays like Thanksgiving, people tend to eat very heavy meals with lots of proteins and carbohydrates, and this can impact not only kidney function, but also liver, pancreas and cardiac function,’ Mandayam said.

‘When you consume carbohydrates, the body will use what is necessary for immediate energy release but any extra carbohydrates are converted into fat and stored underneath the skin and in the muscles and the liver. Similarly, when you eat a lot of fat, if the fat can’t immediately be converted into energy-producing adenosine triphosphate, then all of the fat will be stored in various fat deposits in the body,’ Mandayam explained.

‘The building up of fat inside your liver can lead to liver failure or cirrhosis, and fat inside your blood vessels can lead to heart attacks. Additionally, eating a lot of protein that your body can’t metabolize can lead to an increase in blood urea nitrogen, which adds stress on kidneys because they have to work harder to excrete this.

It is especially important for people with chronic kidney disease and kidney stones to not overeat,’ he said.

‘For people with kidney disease, even eating normal amounts of food puts stress on their kidneys,’ he said. ‘If you consume large amounts of carbohydrates, protein or fat the stress on an overworked, half functioning kidney will get even worse and can accelerate your kidney dysfunction.’”

It always made sense to me that overeating is detrimental to your health, but I was thinking in terms of obesity which could lead to diabetes which, in turn, could lead to CKD. I’ve also noticed that since I read this report, I’ve been eating less without making an effort. For years, I’ve been struggling with my weight and all I had to do is read this report????? Life is weird.

Let’s talk about carbohydrates for a minute. I instantly think of bread, all kinds of bread which is even weirder because I’ve been on a low carb diet for a while. I know, you thought of cakes and pies, didn’t you? Did you know that fruits and vegetables contain carbohydrates, too?

Hmmm, that was a revelation to me the first time I saw those charts. Now I’m wondering about excess calories. I’m limited to 1200 a day and find that this is fine with me. Bear is larger, being both male and bigger than I am, so his calorie limitations are higher. Your renal dietician can tell you what your ideal calorie count per day is if you don’t know.

So, why limit calories? Renal Medical Associates at http://renalmed.com/wp-content/uploads/2015/08/Nutrition-and-the-CKD-diet.pdf explain this succinctly:

  Why being overweight matters and what you can do about it.

We used to think that those “few extra pounds” were just dead weight. We now know that those extra pounds work together to disrupt your body’s normal functioning-with the goal of making you gain more weight. That’s why losing weight is such a difficult task.

I’m back. It’s important to limit your calorie limit so that you don’t add those extra pounds. The extra pounds not only make it more difficult to lose weight, but can lead to obesity… which can lead to diabetes… which can lead to CKD. This is starting to sound familiar, isn’t it?

If you already have CKD, the extra pounds you gain without calorie restrictions make it more difficult for your poor, already overworked and struggling kidneys to do their jobs.

What are those jobs you ask? Let’s take a look at Verywell.com at https://www.verywell.com/kidney-functions-514154 ‘s answer:

• Prevent the Buildup of Waste Products – The kidneys function as an intricate filter, removing normal waste products of metabolism, as well as toxins from the body. In the process of removing toxins, the kidneys may be damaged   by these substances.
• Regulate Fluid – Through holding on to fluids when a person is dehydrated, or eliminating excess fluids, the kidneys control fluid balance in the body.
• Regulate Electrolytes – The kidneys play an important function in electrolyte balance in the body, regulating the levels of sodium, potassium, and phosphate. This maintaining of optimal levels of electrolytes is referred to as homeostasis – or equilibrium.
• Regulate Blood Pressure – Through the production of a hormone called renin, the kidneys play an important role in regulating blood pressure. Learn more about the renin-angiotensin system.
• Regulate Production of Red Blood Cells – The kidneys produce a hormone called erythropoietin which controls the production of red blood cells in the bone marrow.
• Bone Health – The kidneys produce an active form of vitamin D which keeps the bones healthy.

Hey, it’s Thanksgiving. You can enjoy the holiday meal without overeating.

Until next week,
Keep living your life!

Any Veterans Here?

Veterans Day was Saturday, although many schools and businesses chose to celebrate it on Friday. That confused me since I mistakenly thought all national holidays falling on the weekend in the U.S. were celebrated on the following Monday. Once that was straightened out for me, I wondered if we were the only country to honor those who fought for us.

According to The United States Department of Veterans Affairs at https://www.va.gov/opa/vetsday/vetday_faq.asp, we’re not:

Q. Is Veterans Day celebrated in other countries?

A. Yes, a number of countries honor their veterans each year on November 11, although the name and types of commemorations differ somewhat from Veterans Day celebrations in the United States. For example, Canada and Australia observe “Remembrance Day” on November 11, and Great Britain observes “Remembrance Day” on the Sunday nearest to November 11. There are similarities and differences between these countries’ Remembrance Day and America’s Veterans Day. Canada’s observance is actually quite similar to the U.S. celebration, in that the day is intended to honor all who served in Canada’s Armed Forces. However, unlike in the U.S., many Canadians wear red poppy flowers on November 11 in honor of their war dead. In Australia, Remembrance Day is very much like America’s Memorial Day, a day to honor that nation’s war dead.

In Great Britain, the day is commemorated by church services and parades of ex-service members in Whitehall, a wide ceremonial avenue leading from London’s Parliament Square to Trafalgar Square. Wreaths of poppies are left at the Cenotaph, a war memorial in Whitehall, which was built after the First World War. At the Cenotaph and elsewhere in the country, a two-minute silence is observed at 11 a.m., to honor those who lost their lives in wars.

There are 600,000 veterans with kidney disease in the U.S. Considering that kidney disease is a medically dischargeable disease (Can you imagine soldiers in the field trying to stick to the renal diet?), I began to wonder just how our veterans were being treated once they were no longer active military.

I went to the National Institute of Diabetes and Digestive and Kidney Diseases at http://bit.ly/2ABGeli for the following information:

The prevalence of chronic kidney disease (CKD) in the Veteran population is estimated to be 34% higher than in the general population, due to demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension. VA currently cares for over 600,000 Veterans with kidney disease in their 153 medical treatment facilities or 800 community based outreach clinics (CBOC’s) across the United States. Those Veterans who progress to kidney failure are treated either at home or in one of the 70 VA dialysis units, or if dialysis services are not directly available, may be treated in the community under VA contracted care. Currently over 15,000 Veterans receive care directly by VA or through the community under VA contracted care. Eligible Veterans may also elect to receive dialysis care in the community using Medicare or other personal health benefits programs. Renal transplantation is also offered through the VA as a regionalized service at 5 centers.

Wait a minute. Why did “demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension” lead to a whopping 34% of veterans having kidney disease?

I know when Bear spoke with me about his 25 year military career, he talked of people with different ethnic backgrounds from different parts of the country… some from different parts of the world.

I remembered writing this in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“…Native American, Alaskan Native, Hispanic, Pacific Islander or Afro-American ethnic groups…have a 15 to 17% higher occurrence of CKD.”

And I was off and running. Last Veterans Day’s Huffington Post was able to help out here.

“According to the U.S. Department of Defense, as of 2012 there were over 22,000 American Indians and Alaska Natives on active duty, and the 2010 Census identified over 150,000 American Indian and Alaska Native veterans.”

You can read the entire article at https://www.huffingtonpost.com/national-museum-of-the-american-indian/american-indians-serve-in-the-us-military_b_7417854.html.

And Hispanics? Journalist Erika L. Sanchez wrote in 2013 that over 157, 000 Hispanics served in the military then. By the way, her article at http://nbclatino.com/2013/01/01/u-s-military-a-growing-latino-army/ gives the rest of us a little insight into the Latino community’s military leanings.

I hesitate to come up with the number of Pacific Islanders serving in the military since the information is even older than that for Native Americans and Alaskan Natives (Did you notice they were grouped together?) or Hispanics. It’s also included with that of Asians, so the categories are Asian-Pacific Islanders rather than Pacific Islanders.

As for Afro-Americans or Blacks – readers, which name do you prefer? – the closest I can figure out is that 370,842 Blacks or 16% of the Blacks in the United States served in the U.S. military… in 2011.

None of these statistics is current. It takes time for the military to collect and compose their data, but I had been hoping for numbers that were a little more timely.

And now the biggie: just how much is The Veterans Administration spending on veterans with kidney disease?

Finally, a fairly current article. In April of this year, MedPage Today at https://www.medpagetoday.com/meetingcoverage/nkf/64668 offered this information from Kristen Monaco’s article:

Rajiv Saran, MD, of the University of Michigan, and colleagues found the total cost of CKD care in the Department of Veterans Affairs healthcare system increased from $12 billion in 2006 to $19 billion in 2014 in current dollars. Adjusted for inflation, the increase was 26%, the researchers reported as a late-breaking abstract at the National Kidney Foundation’s 2017 Spring Clinical Meeting.

More than three-fourths of the VA’s aggregate spending each year on CKD patients was dedicated to patients with either stage 3a or 3b disease. However, the average cost per patient to treat increased with each worsening stage of CKD, with non-dialysis stage 5 CKD being the most expensive.

To all those who served, whether or not you developed kidney disease, thank you from the bottom of my heart.

 

Until next week,
Keep living your life!

Snap, Crackle, and Pop

I haven’t taken to eating boxed cereals, although I do thank Rice Krispies for coming up with that slogan. I’ve discovered there are drawbacks to being independent that I hadn’t thought about… like the one that landed me in my new chiropractor’s office where I heard those sounds coming from within my body.

It started off so innocently. Our outdoor swing bit the dust so Bear took it apart. I decided our hammock chairs would look great where the swing had been. Ah, but Bear was busy moving the parts of the swing from that part of the patio.

I could do it if I went slowly. So I pulled one of them partway down the walkway, then pulled the second one. Of course, pulling meant going backwards. Why I was looking forward instead of backward, I’ll never know. I managed to trip over the foot of the first hammock frame.

My arm was scraped from one end to the other. My thigh had the biggest black and blue mark I’d seen on my body to date. But worse of all, my neck hurt. No problem, I figured. I’ll just wash out the scrapes, ice the neck and the thigh and I’ll be fine. But I wasn’t. Hence, the chiropractic visits.

It’s been two weeks. The arm is almost healed, the black and blue mark moving toward disappearing and the neck barely hurts at all. Hmmm, if chiropractic is so good for these aches and pains, could it also be good for my kidneys?
The Medical Dictionary of The Free Dictionary at http://medical-dictionary.thefreedictionary.com/chiropractic defines chiropractic for us:

Chiropractic is from Greek words meaning done by hand. It is grounded in the principle that the body can heal itself when the skeletal system is correctly aligned and the nervous system is functioning properly. To achieve this, the practitioner uses his or her hands or an adjusting tool to perform specific manipulations of the vertebrae. When these bones of the spine are not correctly articulated, resulting in a condition known as subluxation, the theory is that nerve transmission is disrupted and causes pain in the back, as well as other areas of the body.

Chiropractic is one of the most popular alternative therapies currently available. Some would say it now qualifies as mainstream treatment as opposed to complementary medicine. Chiropractic treatment is covered by many insurance plans and in 2004, the U.S. Department of Veterans Affairs announced full inclusion of chiropractic care for veterans. It has become well-accepted treatment for acute pain and problems of the spine, including lower back pain and whiplash.…

I didn’t see anything in my research to connect this type of medicine and the kidneys, so I tried thinking about it another way. What are the major causes of Chronic Kidney Disease? We know diabetes is the first and hypertension the second.

I took a look at NaturalNews.com (https://www.naturalnews.com/035546_chiropractic_blood_sugar_diabetes.html) and found the following:

The average person may not recognize how diabetes and chiropractic are connected. What does the back have to do with blood sugar? Often, an electrician understands this faster than most people. Interfere with the current flowing through the wires and the appliances or areas of the house lose normal function or might even catch fire.

If the nerve supply from the upper neck or middle back (the two areas that supply the pancreas) are disturbed, pancreatic function suffers; maybe in its ability to produce enzymes to digest proteins, fats and carbohydrates, or maybe insulin production, or both. Blood sugar and digestion become unbalanced, resulting in either in diabetes or hypoglycemia.

Nutritionist Carolyn Heintz further explains:

Chiropractic care might be helpful to diabetics if problems in the spine affect blood flow to the pancreas. The pancreas releases insulin in the body which is necessary to regulate proper levels of glucose in the blood. If the pancreas is not receiving enough oxygen and nutrients through proper blood circulation, perhaps this might have an effect on insulin production.

Another way chiropractic treatment might help those who suffer from diabetes is by alleviating pressed nerves on the spine to allow for a regenerated connection between the brain and the systems that are involved in the endocrine system and a body’s metabolism. Also, when the nervous system is free to work properly, the body can work to heal itself better.

You can read the rest of her article at http://belviderechiropractic.com/conditions/can-chiropractic-care-help-treat-diabetes/.

This makes sense. If there’s a ‘short’ in the system, it’s just not going to work. If you correct the short allowing the current to flow, you could be shortcutting diabetes… and maybe Chronic Kidney Disease.

Well, how about hypertension? How can chiropractic help with that?

This caught my eye, but it will need some explaining. I discovered it at https://www.echiropractor.org/chiropractic-blood-pressure/.

Upper cervical chiropractic treatment, “performed by a mechanical chiropractic adjusting device” was noted to decrease both systolic and diastolic blood pressures, and these findings were published in 1988…. More recently, it was found that the Atlas Adjustment lowered blood pressure with the effectiveness of “two blood pressure medications given in combination”, according to Dr. George Bakris. The drop in blood pressure as a result of the realignment of the Atlas vertebra was “an average of 14 mm Hg greater drop” (systolic) and “an average 8 mm Hg greater drop” (diastolic), compared to “sham-treated patients”.

Cervical means “relating or belonging to the neck, or to any body part that resembles a neck,” according to Encarta Dictionary. In the paragraph above, it means the neck. Here’s a picture of a mechanical chiropractic adjusting device. It’s used if more than finger or hand pressure is needed for spinal adjustment and sounds almost like a stapler. It doesn’t break the skin, simply manipulates the spine.

The Atlas Adjustment is a little harder to explain. The topmost vertebra of your neck is called the Atlas because it holds up the globe better known as your head. Remember your Greek mythology? Atlas supported the world. It’s this vertebra that is being manipulated.

I, for one, am convinced. I was wondering whether or not to continue the visits since I’m feeling better. It sounds like something I should do. How about you?

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!

Not a Drug, a Medical Food

On a Facebook Chronic Kidney Disease support page, I mentioned that I use a medical food to help with my osteoarthritis. And then the questions started flying. Those of us who would prefer no more Rx drugs seemed the most interested. I already take Rx drugs for both hyperlipidemia and hypertension. I didn’t want to add yet another Rx drug that may have side effects. This is a lot safer for my poor little kidneys.

Let’s start at the beginning with a definition. According to the Free Dictionary’s Medical Dictionary at http://medical-dictionary.thefreedictionary.com/Medical+food, a medical food is:
A food formulated by the selective use of nutrients and manufactured for the dietary treatment of a specific condition or disease

I am not referring to dietary supplements here, but rather a replacement for a drug that can be prescribed for a specific disease. In my case, it’s osteoarthritis. CoverMyMedicalFoods.com explains that:

Medical foods are prescription medicines made from natural molecules found in food.

One pill can equal natural ingredients found in five pounds of fruits and vegetables.

Purified, natural ingredients equal fewer side effects.

Large amounts of these purified molecules help the body fight disease.

Unlike dietary supplements or Rx drugs, the ingredients are designated G.R.A.S. “Generally Recognized as Safe,” which is the highest standard of safety at the FDA.

Also unlike dietary supplements or Rx drugs, medical foods are intended for a disease or condition that has distinctive nutritional requirements.

Like Rx drugs, but unlike dietary supplements, they must be supervised by a physician and dispensed by prescription. (My rheumatologist performs this task for me.)

Pharmacist Gayle Nicholas Scott explains The Federal Food and Drug Administration’s (FDA) rules for medical foods on Medscape at https://www.medscape.com/viewarticle/744036.

The FDA specifies that medical foods are foods specifically formulated for dietary management of diseases or conditions with distinctive nutritional needs that cannot be met by diet alone. Generally, a product must meet the following criteria to be labeled a “medical food”:
• A specific formulation (as opposed to a naturally occurring foodstuff in its natural state) for oral or tube feeding;
• Labeled for the dietary management of a specific medical disorder, disease, or condition with distinctive nutritional requirements;
• Intended for use under medical supervision; and
• Intended only for a patient receiving active and ongoing medical supervision for a condition requiring medical care on a recurring basis so that instructions on the use of the medical food can be provided.

This is all getting a bit technical so I decided to go to my medical food’s website for an example. I take Limbrel. This is from their website (as mentioned) at http://www.limbrel.com/hcp-medical-food.php.

Limbrel is a prescription medical food product for the daily nutritional management of the metabolic aspects of osteoarthritis. Limbrel is not a drug, nor a dietary supplement. Because Limbrel is a Medical Food (MF) product, we are required to describe it differently from how a drug or dietary supplement is described.

By statutory and regulatory definition, product claims must be explicitly different for medical food products versus drugs versus dietary supplements. Generally, Medical Food claims reference the “dietary management” or “distinctive nutritional requirements” of a particular disease or the metabolic processes of that disease, whereas drug claims reference “curing, treating, preventing or mitigating” the effects or symptoms of a particular disease, while dietary supplement claims reference “supporting” healthy function of the body or particular body organ or system.

First, osteoarthritis patients are shown to have distinctive nutritional requirements and metabolic imbalances. Then, for example, a Medical Food may claim the dietary management of metabolic processes of osteoarthritis, whereas a drug may claim the reduction of osteoarthritis pain, while a dietary supplement may claim the support of overall health of joints. A Medical Food must meet the distinctive nutritional requirements of a disease through dietary management, whereas a drug may address the symptoms of a disease or its treatment or prevention of the disease.

Claims for both MFs and drugs must be supported by solid laboratory and clinical data. But, by contrast, for a drug, the safety of the product and both the therapeutic claims and the ingredients must be pre-approved by the FDA through extensive clinical testing. MFs have up-front safety obtained through GRAS (Generally Recognized As Safe) status of the ingredients, including use of the food or food additive or component in perhaps millions of people, whereas drugs have unproven safety that must first be shown in animals and then be tested in human clinical trials, which typically exclude wider populations with various health problems. Medical Food ingredients have GRAS designation, the highest FDA standard of safety given to food. Most MFs are also tested in clinical trials to confirm their “traditional use” safety.

The use of Medical Food, regulated by the FDA, represents an entirely different approach to managing diseases. For example, unlike drugs, Limbrel does not treat or mask the symptoms of osteoarthritis. Instead, Limbrel manages the underlying metabolic processes of osteoarthritis to restore the proper metabolic balance of inflammatory metabolites at the cellular level, and thereby promotes normal physiologic function.

A little reminder is in order here: metabolic has to do with your metabolism. The Merriam Webster Dictionary at https://www.merriam-webster.com/dictionary/metabolism defines that as
a: the sum of the processes in the buildup and destruction of protoplasm; specifically: the chemical changes in living cells by which energy is provided for vital processes and activities and new material is assimilated…
• Regular exercise can help to increase your metabolism.
b: the sum of the processes by which a particular substance is handled in the living body
c: the sum of the metabolic activities taking place in a particular environment
• the metabolism of a lake

I believe it’s the second definition that concerns us here.

 

What I can say for certain is that, at one point, I doubted it was worth the $50 a month to pay for this medical food so I stopped it. That was a mistake. In retrospect, it seemed that my body’s reaction to stopping was instantaneous… which I doubt is possible. But my elbows started to hurt too much, so I got my prescription. While I may feel some aches and pains on those rare rainy Arizona days, I am relatively pain free the rest of the time.

Until next week,
Keep living your life!

Sex?

I know, I know. When you see that question on an application, you want to answer ‘yes,’ but you’re only given the choice of male or female. Well, at least that’s my experience. Okay, got that out of the way.

Way back in 2011, the following was included in my first Chronic Kidney Disease book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This was way before the website, Facebook page, the blog, the Instagram, Pinterest, Twitter, and LinkedIn accounts. Way before the articles, radio shows, and interviews, book signings, and talks about CKD. Come to think of it, this was way before SlowItDownCKD was born.

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….

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….

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. Any chronic disease can make a man or a woman feel less sexual….

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed….

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….

Well, what’s changed since I was writing What Is It and How Did I Get It? Early Stage Chronic Kidney Disease? in 2010?

The National Kidney Foundation at https://www.kidney.org/atoz/content/sexuality now includes the following on their website:

It’s important to remember that people with kidney failure can have healthy marriages and meaningful relationships. They can fall in love, care for families, and be sexual. Staying intimate with those you love is important. It’s something everyone needs.

Many people think that sexuality refers only to sexual intercourse. But sexuality includes many things, like touching, hugging, or kissing. It includes how you feel about yourself, how well you communicate, and how willing you are to be close to someone else.

There are many things that can affect your sexuality if you have kidney disease or kidney failure — hormones, nerves, energy levels, even medicine. But there are also things you and your healthcare team can do to deal with these changes. Don’t be afraid to ask questions or get help from a healthcare professional.

DaVita at https://www.davita.com/kidney-disease/overview/living-with-ckd/sexuality-and-chronic-kidney-disease/e/4895 also offers advice:

Once again, it’s important to remember, you are not alone.

There are no limits with regard to sexual activities you may engage in as a patient with renal disease, as long as activity does not place pressure or tension on the access site, causing damage. (Me: This is for advanced CKD.)

If you are sexually active, practicing safe sex and/or using birth control are needed, even if you think you may be physically unable to have children.

Activities such as touching, hugging and kissing provide feelings of warmth and closeness even if intercourse is not involved. Professional sex therapists can recommend alternative methods as well.

Keeping an open mind and having a positive attitude about yourself and your sexuality may lower the chances of having sexual problems.

There are both medical and emotional causes for sexual dysfunction. The reason for your dysfunction can be determined through a thorough physical exam in addition to an assessment of your emotional welfare and coping skills.

Relaxation techniques, physical exercise, writing in a journal and talking to your social worker or a therapist can help you to feel better about your body image and/or sexual dysfunction.

Resuming previous activities, such as dining out or traveling, as a couple or single adult, can be helpful.

Provide tokens of affection or simple acts of kindness to show you care.

Communicate with your partner or others about how you feel.

According to the Kidney Foundation of Canada at file:///C:/Users/Owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/Sexuality%20and%20CKD.pdf, these may be the causes of sexual problems in CKD.

Fatigue is a major factor. Any chronic illness is tiring, and chronic kidney disease, which is often accompanied by anemia and a demanding treatment, practically guarantees fatigue.

Depression is another common issue. Almost everyone experiences periods of depression, and one of the symptoms of depression is loss of interest in sexual intimacy.

Medications can also affect one’s ability or desire to have intercourse. Since there may be other medications which are just as effective without the side effect of loss of sexual function or desire, talk to your doctor about your pills.

Feelings about body image Having a peritoneal catheter, or a fistula or graft, may cause some people to avoid physical contact for fear of feeling less attractive or worrying about what people think when they look at them. (Me: Again, this is for late stage CKD.)

Some diseases, such as vascular disease and diabetes, can lead to decreased blood flow in the genital area, decreased sexual desire, vaginal dryness and impotence.

It looks like the information about CKD and sexuality hasn’t changed that much, but it does seem to be more available these days.

Until next week,
Keep living your life!

Book It!

Every once in a great while, I’ll come across a Chronic Kidney Disease book that I want to share. I think there were only three or four of these in the last six years. Today, I add another one. Dr. Kang, the author, is a local doctor. That was the first thing that caught my eye.

I thought I would be reading the usual information … and I did, but it was written with verve and included some information I hadn’t known. So I did the obvious. I contacted the good doctor to see if he’d be interested in sharing his knowledge with us on the blog. I’m so very glad he agreed.

Dr. Mandip S.Kang, is not only a senior partner in Southwest Kidney Institute right here in Phoenix, but he is also a Fellow in the American Society of Nephrologists I like so much. Just last week, I gleefully accepted their invitation to join the Twitter chat (#AskASN) about staging in CKD and often refer to them in both my blogs and books. He is also the author of the IBPA Gold Award winning book: The Doctor’s Kidney Diets……A Nutritional Guide to Managing and Slowing The Progression of Chronic Kidney Disease, the book that caught my eye.

This is what he wrote for us:

Receiving a diagnosis of kidney disease is not a death sentence for patients, but is often overwhelming and a life changing event. Patients are often confused and the information they receive from different healthcare providers may not be the same. Patients often ask, “What should I do?”

Having experience as a former Assistant Clinical Professor of Medicine at University of Utah School of Medicine and currently as a Senior Nephrologist (kidney specialist), I have gained some insight into how to alleviate my patients’ fears and I have come up with a four point plan that I try to teach my kidney patients. I believe that the role of the physician is to be a teacher and a coach as patients navigate their way into the complexities of a Chronic Kidney Disease diagnosis. I believe that every kidney specialist should have a chalk board in the patient exam rooms and lay out the plan for his or her approach to their patients just like we were taught in schools.

Here is a four point plan that all kidney patients should remember as they visit their kidney specialists and at home. The acronym for the plan is very simple: D.A.M.E.

1. ‘D’ in the acronym stands for diet. The reason I chose diet first comes from the Chinese wisdom in treating any disease: ‘He that takes medicine and neglects diet, wastes the skills of the physician.’ Patients must be taught what the kidney diet is and why they need to follow it for the rest of their lives. Since the kidney diet is complex, they must be provided with educational materials that outline the diet and be strongly encouraged to visit a kidney dietitian who will tell them what and how much to eat.

Dietitians and kidney doctors will teach them about the benefits of eating fresh foods and avoiding processed foods. Patients should remember that the ‘p’ in ‘p’rocessed foods is akin to ‘p’acked with calories. Learning to read a Nutrition Facts label is a must if the doctor wants to do all he or she can to help the patient slow down – and sometimes halt – the progression of kidney disease. It is important to remember that in the earlier stages of kidney disease, the diet may not be as strict – but if progression of the disease is noted, then dietary modifications are more stringent and frequent laboratory tests may need to be performed to assess progress.

2. ‘A’ in the four point CKD plan stands for activity. “What is activity?” you might say. It could mean walking more, taking more steps daily, joining a gym, hiking, biking or any activity that keeps you on your feet. As most Americans already know, the obesity rates in the USA are skyrocketing leading to most chronic health conditions such as Chronic Kidney Disease, Coronary Artery Disease, Stroke, Arthritis, Lung Disease, etc. These chronic health conditions stem from lack of activity and consuming excessive calories. Many patients lead a sedentary lifestyle such as watching TV for long hours which leads to worsening of their health issues. Patients should be encouraged to do the activities they enjoy the most such as dancing, or walking in a park or on a beach. Patients should weigh themselves on a weekly basis to monitor their weight.

3. ‘M’ in the acronym stands for medications that your doctor prescribes. Your doctor may also tell you not to take certain over the counter medications that may harm your kidneys such as Advil, Motrin, Aleve, Ibuprofen, Celebrex, Prilosec, herbal remedies, etc. I encourage all patients to memorize their medications and keep a list with them at all times. Remember that all medications are prescribed because the benefit to the patient outweighs the risk and no medication is entirely safe; therefore, it should be taken as prescribed and any side effects reported to your doctor. You should not take any new medicine unless it has been cleared by your kidney specialist.

4. ‘E’ in the above acronym stands for education. This is the key element in the D.A.M.E plan to treat patients with CKD. Unless the patient has a clear understanding of their disease process, labs, treatment plan, and the role of diet, activity, and medications, they will not be successful in managing and slowing the progression of Chronic Kidney Disease. How well a patient does will depend on their knowledge of their disease and if they comply with the instructions given to them by the kidney doctors.

I hope that all kidney doctors and patients keep the D.A.M.E. acronym in mind. Patients who are active participants in their care lead healthier and productive lives. I wish all of the readers well.

I hadn’t heard of the D.A.M.E. method before but I like it, especially “the ‘p’ in ‘p’rocessed foods is akin to ‘p’acked with calories.” Many thanks, Dr. Kang, for introducing this common sense theme to us.

Until next week,
Keep living your life!

Helping Where You Can

When my brothers made it public that they each had Parkinson’s’ Disease several years ago, I decided to see how I could help. They were being well taken care of by their wives and their medical teams, so they didn’t need my help. Maybe I could help others, I reasoned. So I began exploring ways I might be able to do that… and found one.

It was clear clinical trials with people of my heritage were being conducted and needed participants. It wasn’t clear what these studies entailed. They weren’t reader friendly enough for me to understand, but after multiple emails and phone calls asking for clarification, I finally understood. During the whole process, I kept thinking to myself that this was a wonderful way to help if only it were more accessible – meaning more easily understood.

A couple of weeks ago, Antidote Match approached me about carrying their widget on my blog roll. If you look at the bottom of the lists on the right side of the blog, you’ll see it in turquoise. Actually, I chose turquoise because you just can’t miss that color.

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/ :

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.

Important, right? But why Antidote Match, you ask? That’s easy: because it’s easy. The information offered is in lay language, the common language you and I understand, rather than in medicalese. Maybe I should just let them present their own case.

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

A bit about Antidote
Antidote is a digital health company on a mission to accelerate the breakthroughs of new treatments by bridging the gap between medical research and the people who need them. We have commercial agreements with the majority of the top 25 pharmaceutical companies and CROs, and a partner network that is growing every day.

Antidote was launched as TrialReach in 2010 and rebranded to Antidote in 2016. We’re based in New York, NY and London, U.K. For more information, visit www.antidote.me or contact us at hello@antidote.me.

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.

On another note entirely: my local independently owned book store – Dog Eared Pages – in Phoenix has started carrying the SlowItDownCKD series. Currently, they have 2016 in stage. I had a wonderful time reading from my novel Portal in Time there last Thursday night and was more than pleasantly surprised at the number of CKD awareness contacts I made.
Until next week,
Keep living your life!

Feed Me

Over the years, I’ve seen advertisements for food preparation services. You know the ones that cook your meals and deliver them weekly. I would approach the people offering the service to see what they could do with the renal diet. That was a deal killer right there.

All right, I figured. Maybe what I should be doing is finding a chef who is willing to work with kidney patients rather than ask existing food preparation services to accommodate just me. I even had one chef who agreed that this is a valuable service and something she wanted to do. I was excited. Then she simply stopped emailing and answering calls. That was a couple of years ago.

I sort of gave up… until I ran into an advertisement for Clarence’s food service. I figured it was worth it to try again and called him. It was.

I explained to Clarence that I don’t permit advertising on my blog, but I would like other Chronic Kidney Disease patients to see how they can make use of food preparation services such as his. He was kind enough to write this guest blog for us. I’m hoping that this inspires you to approach a chef in your area to ask him/her if he/she is willing to provide such a service. Of course, not all of us want to have someone else prepare our meals or want to spend the money to do so, so this is a blog for that portion of readers who do.

Meal Planning for Those with Kidney Disease.
Clarence Ferguson, RTSM, CMTA, NT

Understanding your kidney disease, or renal disease, is the first step in taking control of your health. While I am not a doctor, I have aligned myself with those whose specialize in CKD so that I can adjust meals accordingly. When you have kidney disease, your kidneys are no longer able to remove waste effectively from your body or to balance your fluids. The buildup of wastes can change the chemistry of your body causing some symptoms that you can feel, and others that you don’t.

With kidney diseases, the first symptoms you may have are ones that you won’t feel but that will show up in tests that your doctor orders. Common problems are high blood pressure, anemia and weakening bones. It is important to find a kidney doctor (also called a nephrologist). And once you have your doctor’s recommendation that’s where we come in and prepare your meal according to his or her recommendations.

Okay Clarence, we know that but how do we navigate healthy eating?

Here are some suggestions for you and what I prepare for clients who struggle with CKD.

Make sure these snacks are readily available:
1. Fruit: apples, grapes, tangerines or strawberries; dried cranberries or blueberries; or packaged fruit cups with diced     peaches, pears, pineapple, mandarin oranges or mixed fruit. Make sure they are organic.
2. Low- or no-sodium microwave popcorn.
3. Low-sodium crackers, pita chips or unsalted pretzels.
4. Pouches of tuna or chicken and a side of Vegainse (a dairy free option for mayonnaise).
5. Kidney-friendly nutrition bars or liquid supplements, such as the ones from ID life, since they meet these guidelines.

What we do at Fit Body Foods
1. Compare brands. Sodium and potassium levels can vary significantly from one brand to another.
2. Look for low-sodium labels on packaging. Stock up on the lowest sodium broths, stocks and condiments.
3. Choose fresh vegetables, or frozen or canned veggies with no added salt or sodium.
4. Use only 1/4 as much of the tomato sauce and canned tomatoes that a recipe calls for to limit potassium and sodium.
5. Don’t use canned fish or chicken with added salt. All fish is fresh, so we can control the sodium levels by rinsing to reduce the sodium. Try to limit use of canned goods in general.
6. Avoid baking and pancake mixes that have salt and baking powder added. Instead, make a kidney-friendly recipe from scratch.
7. Use sweet pickles instead of dill pickles and check for added salt.
8. Check cold and instant hot cereals for sodium amounts. Although oatmeal contains more phosphorus than some cereals, it may be okay one to two times a week if phosphorus is well-controlled.
9. Check the ingredients in vinegar. Some vinegars, such as seasoned rice vinegar, contain added salt and sugar.
10. Avoid store-bought sauces and gravies that have mystery ingredients in them. Make our own instead from real-food ingredients.
11. Use homemade soup recipes, such as Rotisserie Chicken Noodle Soup, instead of pre-made or canned soups. Some soups contain more than 800 mg sodium per serving.
12. Low – and reduced – sodium broth is great for use in cooking. We save the homemade broth from stewed or boiled chicken or beef.
13. Don’t trade sodium for potassium. Some products replace salt with potassium chloride.
14. Limit nuts, seeds and chocolate as they are high in potassium and phosphorus.

We prepare food weekly and deliver to our clients on Sundays. We take the worry out of meal prep, our meals start at $7.99 a meal, and we can accommodate most palates. We can be reached for orders at: info@coachclarence.com.

Below is a sample recipe:
Cucumber-Carrot Salad
Diet types: CKD non-dialysis, Dialysis, Diabetes
Portions: 4
Serving size: 1/2 cup
Ingredients:
1/4 cup unseasoned rice vinegar
1 teaspoon sugar
1/2 teaspoon olive oil
1/8 teaspoon black pepper
1/2 cucumber
1 cup carrots
2 tablespoons green onion
2 tablespoons red bell pepper
1/2 teaspoon Mrs. Dash® Italian Medley seasoning blend

Notice there is nothing new here. We all know this information. What is appealing is having someone else, someone who understands our diet limitations, buy the food and prepare it for our meals. I explained to Clarence that our food needs as far as electrolytes change with each blood test and he agreed that it’s important to eat according to your numbers. That’s something he’s very willing to pay attention to. Should this interest you, why not approach a professional in your area to see if they can also provide such a service?Big news! SlowItDownCKD 2011 is now available on Amazon.com in both print and digital (and needs reviews: hint). SlowItDownCKD 2012 will not be far behind. These are the first and second parts of the reformatted, larger print, more comprehensively indexed The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, (available only until SlowItDownCKD 2012 is published).

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!

It’s the Heat AND the Humidity

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

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

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

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

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

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

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

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

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

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

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

The CDC offers the following advice to avoid heat illness:

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Shocked

When I checked my phone messages this morning, I saw one from the wife of someone I have known and loved my whole life. That shook me. The message was from his wife, not him. I couldn’t bring myself to listen to it until after I’d had a cup of coffee and fed Shiloh, our dog.

It was bad news. He was in the hospital on life support. I was shocked. Immediately, I felt nausea and a band started to tighten around my head. I noticed my voice was rough as I tried to process what his wife was telling me.

She did an exemplary job of explaining what had happened step by step and including what will happen at the hospital now. After reassuring myself that she had friends around her to support her while she’s emergency central, so to speak, we hung up…and I tried to go through my usual early morning routines.

I knew it wasn’t working when I took the wash out of washing machine, put it back in the washing machine, and started the empty dryer. I knew it wasn’t working when I fed the dog I’d just fed.

So I retreated to the library to start the daily ‘kidney work’: checking email, texts, and LinkedIn for messages from readers; posting on Instagram and Facebook; and perusing Twitter for articles that might interest you. I was having trouble concentrating. Maybe thinking about what I’d write in today’s blog would be more productive.

It was obvious, wasn’t it? I’d write about what shock does to your body and to your kidneys.

In befuddedly casting around on the internet for information, I found this at http://www.harleytherapy.co.uk/counselling/7-warning-signs-acute-stress-reaction-emotional-shock.htm.

By Harley Therapy January 23, 2014 Anxiety & stress, Counselling  

…. While it’s true you aren’t in “medical shock” – an acute circulatory condition where blood pressure falls so severely that multiple organ failure can occur – you are still in a medically recognised kind of shock.

Psychological shock, a form of psychological trauma, is the body’s very real stress response to experiencing or witnessing an overwhelming and/or frightening event….

You might feel as if your brain has turned to mush, or you have ‘brain fog’….

Life might even feel unreal, as if you are disconnected, floating slightly outside of your body and watching yourself carry on doing things. This is called dissociation….

When your brain decides that there is ‘danger’ around, it triggers the primal ‘fight, flight, or flight’ response. Back when we were ‘cave people’ these responses where helpful, but nowadays the overload of adrenaline they involve just leave you with a racing heartbeat, muscle tension, headaches, stomach upset, and random aches and pains….

Sleep is often affected by emotional shock. Insomnia is common. Even if you are sleeping more than ever, you are unlikely to get quality sleep but might suffer disturbed sleep, full of stress dreams. It’s common to develop ‘night panic attacks’ where you wake up suddenly with a racing heart and severe anxiety….

I could identify with this. It seemed I had to correct the spelling of every other word today. My husband was trying to pin down dates for a California trip and I was responding with dates for a New York trip. The doorbell rang, so I answered the phone. You get the idea. I’ve already mentioned the particular headache and the nausea. But what about my kidneys? What was happening to them?

The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/shock+organs, defines shock as “a sudden disturbance of mental equilibrium.” That is a pretty accurate description of what happened when I returned that phone call this morning.

The same site goes on to explain that shock “is associated with a dangerously low blood pressure.” And blood pressure, of course is:

pressure that is exerted by the blood upon the walls of the blood vessels and especially arteries and that varies with the muscular efficiency of the heart, the blood volume and viscosity, the age and health of the individual, and the state of the vascular wall

Thank you to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/blood%20pressure for that definition.

Notice the word “arteries.” Arteries also run into the kidneys. The following is from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

Your kidneys have about a million nephrons, which are those tiny structures that produce urine as part of the body’s waste removal process. Each of them has a glomerulus or network of capillaries. This is where the blood from the renal artery is filtered.

In other words, when you’re in shock – even if it’s emotional shock – the pressure of your blood can be dangerously low. But low blood pressure may also lead to Acute Kidney Injury (AKI). Uh-oh, I remember writing about that in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

….Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease…. Not surprisingly, the risk factors for AKI {Once again, that’s acute kidney injury.} are the same as those for CKD… except for one peculiar circumstance. Having CKD itself can raise the risk of AKI 10 times. Whoa! If you’re Black, of an advanced age {Hey!}, or have diabetes, you already know you’re at risk for CKD, or are the one out of nine in our country that has it. Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times.

Let me make sure you (and I) understand that this is the worst case scenario. A few thoughts about how cardiovascular disease and the kidneys interact before I get on the phone to check on my beloved friend again. This is from a study that was included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.

“The brain and kidney are both organs that are affected by the cardiovascular systems,” said the study’s lead author, Adam Davey, associate professor of public health in Temple’s College of Health Professions and Social Work. “They are both affected by things like blood pressure and hypertension, so it is natural to expect that changes in one organ are going to be linked with changes in another.”

You can find the article at http://www.EurekAlert!.org/pub_releases/2012-11/tu-dkf111312.php

Until next week,
Keep living your life!

Here, There, and Everywhere

I was thinking about the AAKP Annual National Meeting coming up in September. You see, I’ve never been to one. Years ago, when I first started writing about Chronic Kidney Disease a reader asked if I’d be there. I was almost a decade younger then and had lots on my plate: teaching college classes, acting, writing, being an active mother, and getting used to my new diagnose. I had no time to run off to meet a bunch of people with the same disease. I didn’t even know anyone there!

Yep, things have changed for me. I’ve retired from both education and acting as of 2013, my children are out of the house although we still have almost daily contact, and I’m better at dealing with CKD. So I’m going. I thought you might like to know something about this group since it was started by patients for patients.

AAKP is the acronym for the American Association of Kidney Patients. I am flabbergasted that six patients in Brooklyn, New York, started this group in 1969 while they were undergoing dialysis and that today AAKP reaches one million people at all stages of kidney disease. I’m a member as of last week. Did I mention that membership is free? This year’s meeting will be in St. Petersburg, Florida from September 8th to the 10th.

I also shied away because I thought they’d have nothing to offer me since I’m stage 3 and the association was started by dialysis patients. I was wrong. Some of the General Sessions deal with national policy and kidney disease, innovations in kidney disease care, patient centered kidney disease care, and the kidney friendly diet. This is not all of them, just the ones I’m interested in.

The smaller Breakout Sessions that might interest others in the early or moderate stages of CKD are social media, dental health, clinical trials, staying active, veterans’ health, lab values, and vaccinations. But that’s not all: there’s even lunch with the experts on the first two days. The topics range from transplant, caregiver, advocacy, cooking, and support groups to acute kidney injury. I mentioned those areas that interest me, but there’s more, far more.

Before I start to sound like I’m selling you a product, here’s their web site so you can explore this association and national meeting for yourself: https://aakp.org.

Let’s say you don’t want to travel. How else can you partake of the kidney patient world, the part of it that doesn’t deal with going to the nephrologist or renal dietician? Well, have you heard of Renal Support Network at http://www.rsnhope.org/? Lori Hartwell has had kidney disease since she was two years old and wanted to instill hope in those with the disease. Now you understand the URL. There are also podcasts about kidney disease at http://www.rsnhope.org/kidneytalk-podcast/ or you can go through the menu on their home page.

Here’s something you can do to help other kidney patients and maybe, just maybe, see your work in print.

Calling all Storytellers who have kidney disease, Share your Experience!

Enter RSN’s 15th Annual Essay Contest.
This year’s theme is “Describe a positive decision that you have made about your healthcare.”
First Prize: $500, Second Prize: $300, Third Prize: $100
Winning essays will be published on RSNhope.org and in Live&Give newsletter

Lori was especially helpful to me when I was first starting out in CKD awareness advocacy. I think you’ll find something of interest to you on her website, although I’ll bet it won’t be the same something for any two people. What I especially like is the Health Library with articles on varied subjects.

Further afield, The Bhutan Kidney Foundation is doing an Amazonian job of spreading kidney disease awareness. I am constantly reading about their walks and educational meetings, as well as governmental initiatives. I think they may even have a Facebook page. Let me go check. Hi again. I’m back and they do.

Have you heard of Mani Trust? This is an India based group that strives to provide humanitarian help to individuals and their country, including those suffering from kidney disease. We know this is not a Western-part-of-the-world-only problem, but I wonder if we realize just how widespread it is.

Remember I told you about the CKD awareness presentation I offered at a global conference several weeks ago? I found astounding facts from World Life Expectancy at http://www.worldlifeexpectancy.com. One of the most striking facts I included in that presentation is that globally 864,226 people  died of kidney disease last year. That makes kidney disease number 15 in the cause of death hit parade.

In Malaysia, there were 2,768 deaths due to kidney disease, over 2% of the country’s total population. In Albania, there were 443, that’s also close to 2% of the country’s total population. Ghana had 2,469 deaths, which is 1.3%.  Egypt? 15,820, which is almost 3½ %. Here in the United States, there were 59,186 deaths, which is almost 3% of our population. What’s my point?

Kidney disease is a global problem. I don’t know what I can do to help in other countries in other parts of the world, but I do know what I can do to help here… and what you can do to help here. If you’re able to, attend the national meetings and local conferences about kidney disease and spread whatever new information you’ve learned. If you are unable to travel, keep your eye on the Facebook kidney disease pages which often have files and delve into them. Share this information, too. If you don’t travel and you’re not on a computer, register for mailing lists and share information from them, too. Of course, check everything you read with your nephrologist before you share and use the advice yourself.

 

You’ll find a blog roll – a list of kidney care and awareness organizations – on the right side of my blog. Why not explore some of these and see which ones appeal to you? If you like them, you’ll read them. And, hopefully, if you read them, you’ll share the information. According to the latest CDC findings, more than one out of every seven people in the United States has CKD. Let’s try to change those figures. By the way, you can read more about this at https://www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf.

Until next week,
Keep living your life!

How Did It Get Political?

A couple of weeks ago, I wrote about Dr. Amy D. Waterman at UCLA’s Division of Nephrology’s Transplant Research and Education Center. We’d met at Landmark’s 2017 Conference for Global Transformation. She has brought to the world of dialysis and transplant the kind of education I want to see offered for Chronic Kidney Disease. I also asked for ideas as to how I could help in developing this kind of contribution to CKD awareness… and the universe answered.

First the bad news, so you can tell when the good news come in. Here in the U.S., The National Kidney Foundation at https://www.kidney.org/news/national-kidney-foundation-statement-macarthur-amendment-to-american-health-care-act issued the following statement on May 3 of this year:
“The National Kidney Foundation opposes the American Health Care Act (AHCA) as amended. The amendment to AHCA, offered by Representative Tom MacArthur (R-NJ), raises significant concerns for millions of Americans affected by chronic diseases. If this bill passes, National Kidney Foundation is highly concerned that insurers in some states will be granted additional flexibility to charge higher premiums, and apply annual and lifetime limits on benefits without a limit on out-of-pocket costs for those with pre-existing conditions, including chronic kidney disease. The bill also permits waivers on Federal protections regarding essential health benefits which could limit patient access to the medications and care they need to manage their conditions. These limits could also include access to dialysis and transplantation. For these reasons, we must oppose the legislation as amended.


In addition, National Kidney Foundation is concerned that the elimination of income based tax credits and cost sharing subsidies, combined with the reduction in funds to Medicaid, will reduce the number of people who will obtain coverage; many of whom have, or are at risk for, chronic kidney disease (CKD).”

The world sees what stress Trump is causing our country (as well as our planet.) Yet, there is hope in the form of a new bill.

“… the bill — introduced in the House by Reps. Tom Marino (R-Pennsylvania), John Lewis (D-Georgia) and Peter Roskam (R-Illinois) — aims to:
• Have the Department of Health and Human Services (HHS) and U.S. Government Accountability Office (GAO) issue a series of recommendations to Congress on “how to increase kidney transplantation rates; how palliative care can be used to improve the quality of life for those living with kidney disease; and how to better understand kidney disease in minority populations” – to back federal research efforts;
• Create an economically sustainable dialysis infrastructure and modernized quality programs to improve patient care and quality outcomes — for instance, by creating incentives to work in poorer communities and rural areas;
• Increase access to treatment and managed care for patients with a confirmed diagnosis of kidney disease by ensuring Medigap coverage for people living with ESRD, promoting access to home dialysis and allow patients with ESRD to keep their private insurance coverage.
According to the National Kidney Foundation, more than 660,000 Americans are receiving treatment for ESRD. Of these, 468,000 are undergoing dialysis and more than 193,000 have a functioning kidney transplant.”

Thank you to the CDC at bit.ly/2rX8EG5 for this encouraging news. Although it’s just a newly introduced bill at this time, notice the educational aspects of the first point.
For those outside the U.S, who may not know what it is, this is how Medicare was defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease “U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.”

An interview with Trump while he was campaigning last year was included in SlowItDownCKD 2016, (11/14/16) This is what he had to say about medical coverage for those of us with pre-existing conditions like CKD. (Lesley Stahl is the well-respected interviewer.)
“Lesley Stahl: Let me ask you about Obamacare (Me here: that’s our existing health care coverage.), which you say you’re going to repeal and replace. When you replace it, are you going to make sure that people with pre-conditions are still covered?
Donald Trump: Yes. Because it happens to be one of the strongest assets.’ ….
What does the president elect say about Medicare? Those of us over 65 (That’s me.) have Medicare as our primary insurance. I am lucky enough to have a secondary insurance through my union. How many of the rest of us are? By the way, if Medicare doesn’t’ pay, neither does my secondary.”

This is from the same book:
“Here’s what Trump had to say in a rally in Iowa on December 11th of last year (e.g. meaning 2015).
‘So, you’ve been paying into Social Security and Medicare…but we are not going to cut your Social Security and we’re not cutting your Medicare….'”

We do not have the most truthful president here in the U.S., so you can see how even the introduction of the Marino, Lewis, Roskam bill is good news for us. While this is not meant to be a political blog, our pre-existing illness – our CKD – has caused many of us to unwittingly become political.


I see myself as one such person and so will be attending the AAKP Conference in St. Petersburg, Florida, in September. What’s the AAKP you ask? Their Mission Statement at https://aakp.org/mission/ tells us:

“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 more than 40 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.”

For those of you of can’t get to the Conference, they do offer telephone seminars. The next one is June 20th. Go to https://aakp.org/aakp-healthline/ for more information.

Talking about more information, there will be more about AAKP in next week’s blog.
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!

The Helper Asks for Help

Imagine my surprise when I received an email from Deanna Power, Director of Outreach Disability Benefits Help at the Social Security Administration. My first thought: are they raising my monthly amount? But isn’t it the wrong time of year for an awards letter from them? And why would the email be from Disability anyway? Hmmm, so I did the logic thing; I opened the email and read it.

Look at this! Ms. Power wants me to help those on dialysis and those who have a transplant understand the application for SSA. While I don’t usually deal with either End Stage Chronic Kidney Disease or Transplantation, this struck me as worthwhile. Take note of the possibility of SSA for less advanced kidney disease, too. So, without further ado…

****

If you have been diagnosed with kidney disease, you know that maintaining your career can be challenging due to your health needs and frequent doctor’s appointments. There might be financial assistance available for you.

The Social Security Administration (SSA) will compare any applicant with kidney disease to its own medical guide of qualifying conditions, the Blue Book (written for medical professionals), which outlines exactly what treatments or test results are needed to qualify. This is under Section 6.00 which outlines three separate listings for kidney disease. Meeting one is enough to medically qualify.

6.03: Chronic kidney disease with hemodialysis or peritoneal dialysis. Dialysis must be expected to last for a continuous period of at least one year. Disability benefits will be paid throughout your treatments. An acceptable medical source (blood work, physician’s notes, etc.) is needed to approve your claim. You also may meet a kidney disease listing before your first round of dialysis, so be sure to check listing 6.05 (below) if your doctor is considering dialysis.

6.04: Chronic kidney disease with transplant. You will automatically medically qualify for disability benefits for at least one year. After that the SSA will revaluate your claim to determine if you are still eligible for disability benefits.

6.05: Chronic kidney disease, with impairment of function. This is the most complicated listing. The Blue Book – which was written for medical professionals – is available online, so you should review it with your doctor to know if you’ll qualify. In simplified terms, the Blue Book states:

You must have one of the following lab findings documented on at least two occasions, 90 days apart, within the same year:

  • Serum creatinine of 4mg/dL or greater, OR
  • Creatinine clearance of 20 ml/min or less, OR
  • Estimated glomerular filtration rate of 20 ml/min/1.73m2 or less

Additionally, you must have one of the following:

  1. Renal osteodystrophy (bone disease caused by kidney failure) with severe bone pain  and acceptable imaging documenting bone abnormalities, such as osteitis fibrosa, osteomalacia, or bone fractures, OR
  2. Peripheral neuropathy, OR
  3. Anorexia with weight loss, determined with a BMI of 18.0 or less, calculated on at least two occasions at least 90 days apart within the same year, OR
  4. Fluid overload syndrome with one of the following:
  • High blood pressure of 110 Hg despite at least 90 days of taking prescribed medication. Blood pressure must be taken at least 90 days apart during the same year.
  • Signs of vascular congestion or anasarca (fluid build up) despite 90 straight days of prescribed medication. Again, the vascular congestion or anasarca must have been recorded at the hospital at least twice, three months apart, and all within the same year.

You may need additional tests to evaluate your kidney function to determine your eligibility.

The SSA has a special approval process called a “Medical Vocational Allowance” that helps people with less advanced kidney disease get financial assistance when your kidney disease prevents you from performing any work that you’re qualified for. The SSA will look at how your treatments prevent you from working, and then compare your restrictions to your age, education, and work history.

Older applicants have an easier time qualifying this way, as the SSA believes they’ll have a harder time getting retrained for a new job. If you don’t have a college degree, you’ll also have an easier time getting approved, as people with college degrees often have a variety of skills that can be used at sedentary jobs. The more physical your past jobs, the better your chances of approval.

A Medical Vocational Allowance relies heavily on the findings from the Residual Functional Capacity (RFC) evaluation. An RFC documents how much you can stay seated or on your feet, how much weight you can lift, your ability to stoop and walk, and more. You can download an RFC online for your doctor to fill out on your behalf.

The majority of applicants can complete the entire process online. This is the easiest way to apply as you can save your progress to complete your application later. If you’d prefer to apply in person, call the SSA at 1-800-772-1213 to schedule an appointment at your closest Social Security office. There are at least four locations in every state.

The most important components of your application will be your thoroughness and attention to detail. Fill out every question on the application. Describe how your kidney disease impacts your ability to work specifically, or how it keeps you from performing daily tasks as you used to. Any complications or side effects from your treatments and medications need to be recorded as well.

The SSA will not require you to submit your medical records yourself, but you do need to list every hospital where you’ve received treatment. If the SSA can’t find evidence documenting your kidney disease, you won’t be approved.

It takes an average of five months to be approved. That’s when your benefits start. You will be eligible for Medicare 24 months after “the onset of your disability,” which is typically the point at which your kidney disease stopped you from working. If your kidney disease is end stage, your waiting period will be waived.

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Many thanks to Ms. Power for suggesting I pass on this information. Please use the links, file your papers, and make life a bit easier for yourself if you fit into any of these designations. It’s all about helping each other after all, isn’t it?

Until next week,

Keep living your life!

Just Blend In

Well, if that doesn’t beat all! Here I thought I was juicing until a reader asked me if my nephrologist knew the difference between juicing and blending. There’s something called blending? Let’s get my doctor out of the equation right away. He may or may not know the difference between the two, but I certainly didn’t.

I heard juicing and just assumed (and we all know what happens when we assume) it meant tossing 80% vegetables – since this was prescribed for fast weight loss – and 20% fruits in the blender. Hmmm, the name of the machine I used should have tipped me off that there was a difference, but it went right over my head.

Let me tell you what I learned. Juice, according to Dictionary.com at http://www.dictionary.com/browse/juicing, is: “the natural fluid, fluid content or liquid part that can be extracted from a plant or one of its parts…” while juicing is “to extract juice from.” Uh-uh, I wasn’t doing that. There was no pulp left after the vegetables and fruits were processed in the blender. It all sort of mushed – oh, all right – blended together.

The same dictionary tells me blending is: “to mix smoothly and inseparably together.” Yep, that’s what I’ve been doing. By the way, for those of you who asked to be kept posted about any weight loss, I’ve lost five pounds in ten days. To be perfectly candid, there was one day of I’m-going-to-eat-anything-I –want! mixed in there.

Another CKD Awareness Advocate wondered just what I was doing to my electrolyte limits while on this blending (I do know that’s what it is now.) diet. I arbitrarily chose a recipe from a juicing book I got online before I realized I wasn’t juicing. The recipe called for:

2 beets (what a mess to peel and chop)

2 carrots (I used the equivalent in baby ones since my hands were already starting to hurt from dealing with the beets)

8 strawberries

7 leaves of kale – which I learned is also called Tuscan cabbage

I added a cup of water since I wasn’t taking any pulp out, so the mixture was really thick.

All the ingredients were on my renal diet. So far, so good. But the question was about my daily electrolyte limits. My limits are as follows (Yours may be different since the limits usually are based upon your most current labs.):

Calories – 2100

Potassium – 3000 mg.

Phosphorous – 800 mg.

Protein – 5 ounces (141,748 mg.)

Sodium – 2000 mg.

Nutritional Data at http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2348/2 tells me I drank this much of each of those electrolytes in the total of two drinks I had of this concoction… I mean blend. The measurement is milligrams and each drink replaces a meal.

 

 

Protein Phosphorus
Beets  1300   33
Carrots  2700   42
Kale  2200   38
Strawberries  1000   37
Totals  7200 150

 

 

 

Potassium

 

 

Sodium

Beets   267  1300
Carrots   359   2700
Kale   299  2200
Strawberries   233   1000
Totals  1158  7200

 

 Calories
Beets    33
Carrots    42
Kale    38
Strawberries    37
Totals   150

I had to backtrack a little to figure out that 8 baby carrots is the equivalent to 2/3 of a cup or a little over five oz. Thanks to http://www.fruitsandveggiesmorematters.org/how-much-do-i-need for the help there. They were also the source I used to verify that 8 large strawberries equal 1 cup or 8 oz.

The calculations were the hardest part of this blog for me. I rounded up whenever possible. Also, keep in mind that different sites or books may give you different approximations for the electrolytes in the different amounts of each different food you blend. I discovered that when I was researching and decided to stick with the simplest site for me to understand.

So, did I exceed my limits? I am permitted three different vegetables per day with a serving of half a cup per vegetable. There are only three vegetables in this recipe. I did go over ½ cup with the all of them, yet am under my limitations for each of the electrolytes. This is complicated. As for the fruit, I am also allowed three different ones with ½ cup limit on each. Or can I count the one cup of strawberries as two servings of today’s vegetables? Welcome to my daily conundrum.

Over all, I still have plenty of electrolytes available to me for my third meal today, which is to be a light meal of regular foods (provided they’re on my renal diet). I also have two cups of coffee a day which has its own numbers:

Protein  Phosphorus Potassium  Sodium   Calories

6000              14                232               9               4

Add those in and I still have plenty of food available to me with the electrolytes within the balance limits. The funny part is that I’m not hungry for hours after one of the blended drinks and, bam! all of a sudden I’m ravenous. I usually have the light meal mid-day so I’m not still digesting at bedtime. This is really important: on that I’m-going-to-eat-anything-I –want! day, I was hungier and hungier the more I ate and didn’t recognize when I was full.

The nice part about blending is that the fiber is still in the mixture. Fiber is necessary for a multitude of reasons when you’re a CKD patient. DaVita at https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/fiber-in-the-kidney-diet/e/5320 lists those reasons for us:

Benefits of fiber

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

Our fourth anniversary is Thursday. We have had numerous health problems to deal with since that date, BUT we’ve also had numerous opportunities for fun…and we’ve taken each one. Did I ever tell you we had the ceremony at 4 p.m. in our backyard and the reception at 6 p.m. in order to help us remember the date? 4/6 = April 6th. Get it?

Anyway, any help offered to make the blending and a light meal work on Saturday when we’ll be celebrating by attending the Phoenix Film Festival (http://www.phoenixfilmfestival.com/) all day and night will be gratefully accepted. Bring your copy of one of my books. I’ll gladly sign it for you.

Until next week,

Keep living your life!

Processed Foods: Yea or Nay?

Good morning, world! It’s still March which means it’s still National Kidney Month here in the USA and Women’s History Month. I’m going to take liberties with the ‘history’ part of Women’s History Month just as I did last month with Black History Month. Today we have a guest blog from a woman – Diana Mrozek, RDN – which deals with the kidneys.

You know you’re entitled to a free nutritional appointment yearly after two the first year if you have CKD. Here’s what I wrote about that in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Most people think of a nutritionist as a luxury even if they do have a chronic disease.  When I pulled out my checkbook to pay my renal dietitian [RD], I was told the government will pay for her services.  That made sense.  Especially in the current economic atmosphere and for older people, the government needs to help pay our medical bills.”

My nephrologist is part of a practice which rotates their nutritionists. It’s a pretty good idea since I get different points of view about my renal diet from dietitians who each have my records at hand. Your renal diet is tweaked according to your latest labs, so having your records in front of them is important to you and your nutritionist.

Notice I was writing about a RD and Diana is a RDN. The only difference between the two is that Registered Dieticians need not also be Nutritionists, but an RDN is both a Dietician and a Nutritionist.

Let’s take a look at Diana’s unique take on processed foods now.

Processed Food, Chronic Kidney Disease and Your Health

What foods come to mind when you hear the words “processed food”? Is it potato chips? Fast food? Margarine? Or maybe bread? Olive oil? Milk? Do you think artificial? Unhealthy? Safe? Convenient? Cheap?

If any of these words or foods came to mind, you are correct! Let’s clarify. Processed is a term that applies to a wide range of foods as by definition they are any food that has been altered from its natural state usually for either safety or convenience. Many foods need to be processed to make them suitable for eating, for example extracting oil from seeds and pasteurizing milk to make it safe to drink.

Processed foods can have many benefits like convenient and safe food storage as well as better retention of nutrient content. For example, flash frozen fruits and vegetables may have higher vitamin and mineral content than fresh or canned. They also provide more choice, less waste, less cost and can reduce food preparation and cooking time. Processed foods can be helpful for people who have difficulty cooking, like the elderly or disabled.

Over the past several years, many working in the nutrition industry have become very critical of processed foods, and their widespread use in our diet has been blamed for everything from obesity to cancer. However, other than fresh produce straight from the fields, you would have a hard time finding many unprocessed foods in your local grocery store. Most store-bought foods have been processed in some way including freezing, canning, baking, drying, irradiating and pasteurizing. Processed foods are here to stay, but making informed choices when grocery shopping will allow them to be part of a healthy, balanced diet.

The problem with some of today’s processed foods are the amounts of salt, sugar and fat that are often added to enhance taste, extend shelf life and retain moisture, texture, etc. Because we rely heavily on processed foods, we may be eating more salt, sugar and fat than we need. This is important for people with kidney disease who need to watch salt intake for blood pressure control. Kidney patients who also have diabetes need to limit sugar intake as well. Since both diabetes and kidney disease increase the risk of heart disease, fat intake is another concern.

So how do you select healthier processed foods?

In general, you want to choose products with less fat and sodium, more fiber and the least added sugar. The best way to do this is to read the Nutrition Facts Label and stick to eating one serving of packaged foods. Use the following guidelines when looking at different nutrients and ingredients on the nutrition labels to make better choices:

Trans Fats – Look for 0 grams. Trans fats are hidden in many fried and baked foods like biscuits, cookies, crackers as well as frozen foods. They increase levels of bad cholesterol (LDL) and decrease good cholesterol (HDL).  If you see shortening or partially hydrogenated oils in the ingredient list, it has trans fat. Remember…Trans fat? Put it back!

Saturated fat – For most people, intake of saturated fat should be around 13-18 grams per day.

Sodium – Sodium intake should be less than 2300 milligrams (mg) per day or 700-800 mg per meal. Look for “no salt added” canned items or items with preferably less than 200 mg per serving. Limit use of boxed side dishes with seasoning packets as well as high sodium condiments like soy sauce, barbeque sauce and bottled dressing and marinades.

Sugar – Sugars are a bit trickier. Instead of grams, check ingredient lists for sugars like corn sweetener and high fructose corn syrup, and words ending in -ose, like dextrose or maltose. If a sugar ingredient is one of the first three ingredients in the list or if there are more than 2-3 different types of sugars, it likely has a lot of added sugar.

Fiber – Look for at least 3 grams of fiber per serving for cereal, bread and crackers. Also, look for the word “whole” before grains, like whole wheat. If it says enriched, it’s likely had the fiber removed during processing.

By spending a few extra minutes of your shopping time taking a closer look at the groceries you are buying, you can limit less healthy additives and still enjoy all the benefits of processed foods!

While I agree with Diana now that she’s brought up processed foods, remember your labs will dictate your renal diet.

I almost forgot to tell you: in Honor of World Kidney Day. which was March 9th, SlowItDownCKD 2016 is now available in print on Amazon.com!!!!!

Until next week,

Keep living your life!

Women and Water (Men, too)

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

Hi There,

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

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

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

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

Staying Hydrated When You Have Chronic Kidney Disease

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

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

Recognizing The Signs

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

Steps to Take

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

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

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

 

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

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

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

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

The CDC also offers advice to avoid heat illness:

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

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

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

Until next week,

Keep living your life!

I’m Wearing Out

I’ll hold off the Cuba blog for another week because something else seems more relevant right now. I was thinking about last week’s blog and what my friend’s surgeon told her about slow bone healing when you have Chronic Kidney Disease. Some vague memory was nagging me.  And then I got it. Yay for those times we conquer mind fog.

fluRemember I’d had the flu that morphed into a secondary infection recently? My breathing was so wheezy and I was feeling so poorly that I went back to immediate care a second time just ten days after the first time I’d been there.

What is immediate care you ask? That’s a good question. Let’s allow HonorHealth at https://www.honorhealth.com/medical-services/immediate-care-urgent-care to answer.

“If you need medical care quickly for a non-life-threating illness or injury.… Patients of all ages can walk into any one of the four HonorHealth Medical Group immediate care centers, with no appointment needed, for such ailments and injuries as lacerations, back pain, cough, headache, or sinus or urinary tract infections.

…advantages:

  • Your co-pay is lower with immediate care compared to urgent care.
  • All four Valley locations are within offices of HonorHealth primary care physicians. That means any follow-up care you might need will be easy to access.
  • Your medical records, including labs and radiology images, soon will be linked systemwide with other HonorHealth facilities. So if you find yourself in an HonorHealth hospital or at an HonorHealth specialist, your medical information will be easily accessible by trusted caregivers. In addition, you won’t need to provide the same information over and over again; it will be in your medical record.”

It’s also clean, well equipped, and the wait is never too long. That’s where I go when I can’t get an appointment with my primary care doctor. There may be a different immediate care facility in your area.

Back to the bone issue. While I was there, an x-ray of my chest was ordered to check for pneumonia. I’m lucky: there wasn’t any. But, there was the unfolding of the thoraxthoracic aorta which I blogged about, and there was “levoconvex curvature and degenerative spurring of the thoracic spine.”

I am way past the point of panicking when I encounter a medical term I don’t know in a report about my body, but I am still curious… very curious. As I wrote in the blog about the unfolding aorta:

IMG_2982“…. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax. … ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax. Thoracic is the adjective form of thorax.” Adjectives describe the noun – the person, place, thing, or idea.

And degenerative? There’s a poignant discovery about that in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: “Ah, CKD is a degenerative disease.”  Well, all right then. Both CKD and the spurring of my thoracic spine are degenerative. What exactly does degenerative mean, though? My all-time favorite Merriam-Webster Dictionary tells us it’s the adjective (yep, that means describing) form of degeneration. Their definition of degeneration at https://www.merriam- webster.com/dictionary/degeneration is “deterioration of a tissue or an organ in which its function is diminished or its FullSizeRender (2)structure is impaired.” This doesn’t sound too great; it sounds like CKD.

What about “levoconvex curvature”? I understand curvature and I’m sure you do, too, so let’s just deal with levoconvex. I see convex in the word and know that means curving outward. Levo is new to me. GLOBALRPh at http://www.globalrph.com/medterm6b.htm, which defines itself as The Clinician’s Ultimate Reference, tells us this simply means left. Now how did I miss that when I studied Greek and Latin all those years ago?  Looks like my spine curves outward to the left. I couldn’t find any relationship between this and CKD except that it may cause kidney pain if the curvature is severe enough.

FullSizeRender (3)Sure enough, there is a connection between CKD and the spurring of my thoracic spine and it’s degeneration. But wait. I forget to explain spurring. This is how it was explained in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“…bone spur.  A what?  Oh, an osteophyte!  Osteo comes from the Latin osseusosossis meaning bone and the Greek osteon, also meaning bone. {Thank you for the memory, Hunter College of the City University of New York course in Greek and Latin roots taken a zillion years ago.}”

Funny how the memory works sometimes and others it doesn’t. I can just see one of my kids rolling her eyes and saying, “So?”

So, it means that there is extra bone growing on my poor thoracic spine as part of the degeneration of my body. Even though it’s my body I’m writing about, I find it amusing that bone is growing rather than diminishing as part of the degeneration. It seems backwards to me.

However, there you have it: chronic kidney disease is a degenerative disease.  The spurring of the thoracic spine is also degenerative. Since I just turned 70, I’m not surprised about the spine thing. Keep in mind that CKD can hit at any age.

You knew it. This is turning into a plea to get tested for CKD. Here’s a bit of information from the National Kidney Foundation of Arizona at NKF-logo_Hori_OBhttps://azkidney.org/path-wellness that can help with that:

“Path to Wellness screenings provide free blood and urine testing, which is evaluated onsite is using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills. For more information, click the link above or call our main line at: (602) 840-1644.”

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Until next week,

Keep living your life!

It’s Unfolding Now

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

What Are You Doing for Others?

Today is Martin Luther King’s birthday. Today, more than ever, we need to heed his message. Whether you apply it to today’s bizarre political scene, your local community, your family, your co-workers doesn’t matter. What matters is the operant word: doing.

mlk-do-for-others

That picture and those words got me to thinking.  What AM I doing for others? And what still needs to be done?

My commitment is to spread awareness of Chronic Kidney Disease (CKD). As a patient myself, I know how important this is. As you know, CKD is a costly, lethal disease if not caught early and treated… and it’s not just older folks – like me – who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it.

stages of CKDWe also know the disease can be treated, just not the way you’d usually expect a disease to be treated. A diet with restrictions on protein, potassium, phosphorous and sodium is one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now image saving the lives of all those who don’t know they have CKD by making them aware this disease exists. Powerful, isn’t it?

We’re all aware by now that the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it. That’s where I come in; I tell people what can be done. I tell people how they can be diagnosed and treated, if necessary.IMG_2979

I was a private person before this CKD diagnosis so many years ago. Now, in addition to a Facebook page, LinkedIn, and twitter accounts as SlowItDownCKD, I make use of an Instagram account where I post an eye catching picture daily with the hashtag #SlowItDownCKD. This brings people to my weekly blog about CKD (the one you’re reading now) and the four books I wrote about it: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease (which explains CKD) and the others – The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1; The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2; and SlowItDownCKD 2015 – which are the blogs in print for those who don’t have a computer or are not computer savvy.

Healthline is a well-respected, informative site for medical information. This past year this blog, SlowItDownCKD, was a winner in their list of The Six Best Kidney Disease Blogs. That brought the hits on my page up by the hundreds. That means hundreds more people are now aware of Chronic Kidney Disease, how it is diagnosed, how it is treated, and how to live with it.badge_kidney-disease-1

But not everything is working as I’d hoped it would. Unfortunately, I am still not having success in having Public Service Announcements placed on television or radio. Nor have I been able to interest most general magazines or newspapers in bringing the disease to the public’s awareness.

It hasn’t totally been a wipeout there, though. Michael Garcia did interview me on The Edge Podcast and both Nutrition Action Healthletter, Center for Science in the Public Interest (the nation’s largest-circulation nutrition newsletter) and New York State United Teachers (membership 600,000) ‘It’s What We Do’ profiled my work spreading CKD Awareness. Profiling my work, interviewing me, mentioning the blog all bring awareness of Chronic Kidney Disease to the public. Awareness leads to testing. Testing leads to diagnosing. Diagnosing leads to treatment. Treatment leads to saving lives. This is why I do what I can to spread awareness of Chronic Kidney Disease.

friendsWhat about you? Can you speak about CKD with your family? Your friends? Your co-workers? Your brothers and sisters in whichever religion you follow? What about your neighbors? I was surprised and delighted at the number of non CKD friends and neighbors who follow the blog. When I asked why they did, they responded, “I have a friend….” We may all have a friend who may have CKD, whether that friend has told us yet or not.

There are more formal methods of spreading this awareness if that interests you. The National Kidney Foundation has an Advocacy Network.

“A NKF Advocate is someone who has been affected by kidney disease, donation or transplant and who wants to empower and educate others. These include people NKF-logo_Hori_OBwith kidney disease, dialysis patients, transplant recipients, living donors, donor family members, caregivers, friends and family members.

Advocacy plays an integral role in our mission. You can make a significant difference in the lives of kidney patients by representing the National Kidney Foundation. We give you the tools you need to make your voice heard.”

You can read more about this program at https://www.kidney.org/node/17759 or you can call 1.800.622.9010 for more information.

The American Kidney Fund also has an advocacy program, but it’s a bit different.

“There is strength in numbers. More than 5,100 passionate patients, friends, loved ones and kidney care professionals in our Advocacy Network are making a huge AKF logodifference on Capitol Hill and in their own communities. Together, we are fighting for policies that improve care for patients, protect patients’ access to health insurance and increase funding for kidney research. As advocates, we play a key role in educating elected officials and our communities about the impact of kidney disease.”

You can register for this network online at http://www.kidneyfund.org/advocacy/advocate-for-kidney-patients/advocacy-network/

Obviously, I’m serious about doing that which will spread awareness of CKD. You can take a gander at my website, www.gail-raegarwood.com, to see if that sparks any ideas for you as to how you can start doing something about spreading awareness of CKD, too. I urge you to do whatever you can, wherever you can, and whenever you can.

Until next week,

Keep living your life!

 

Where Does It All Come From?

KwanzaaFor the past two weeks, I’ve had the flu. I’ve missed the Chanukah Gathering at my own house, Kwanzaa, and New Year’s. I even missed my neighbor’s husband/son birthday party and a seminar I enjoy attending.

Before you ask, yes I did have a flu shot. However, Strain A seems to be somewhat resistant to that. True, I have been able to cut down on the severity of the flu by taking the shot, but it leaves me with a burning question: How can anyone produce as much mucus as I have in the last two weeks?

Mucus. Snot. Sputum. Secretion. Phlegm. Whatever you call it, what is it and how is it produced? According to The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/mucus, it’s “the free slime of the mucous membranes, composed of secretion of the glands, various salts, desquamated cells, and leukocytes.” By the way, spelling it mucous makes it an adjective, a word that describes a noun. Mucus is the noun, the thing itself.

Let’s go back to that definition for a minute. We know from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease that “Leukocytes are FullSizeRender (2)one of the white blood cells that fight bacterial infection.” Interesting, the flu as bacterial infection.

Yep, I looked it up and found this on WebMd at http://www.webmd.com/cold-and-flu/tc/flu-signs-of-bacterial-infection-topic-overview: “A bacterial infection may develop following infection with viral influenza.” Oh, so that’s what all the mucus is about. There’s quite a bit more information on this site, but I’m having a hard enough time sticking to my topic as it is.

I still wanted to know how mucus (without the ‘o’) was produced.

Many thanks to Virtual Medical Centre at http://www.myvmc.com/medical-centres/lungs-breathing/anatomy-and-physiology-of-the-nasal-cavity-inner-nose-and-mucosa/ for their help in explaining the following:

The nasal cavity refers to the interior of the nose, or the structure which opens exteriorly at the nostrils. It is the entry point for inspired air and the first of a series of structures which form the respiratory system. The cavity is entirely lined by the nasal mucosa, one of the anatomical structures (others include skin, body anim_nasal_cavityencasements like the skull and non-nasal mucosa such as those of the vagina and bowel) which form the physical barriers of the body’s immune system. These barriers provide mechanical protection from the invasion of infectious and allergenic pathogens.

By now you’re probably questioning what this has to do with Chronic Kidney Disease. I found this on a site with the unlikely name Straightdope at http://www.straightdope.com/columns/read/1246/how-does-my-nose-produce-so-much-snot-so-fast-when-i-have-a-cold :

“The reason you have a seemingly inexhaustible supply of mucus when suffering from a cold is that the mucus-producing cells lining your nasal cavity extract the stuff mostly from your blood, of which needless to say you have a vast supply. The blood transports the raw materials (largely water) from other parts of the body. Fluid from your blood diffuses through the capillary walls and into the cells and moments later winds up in your handkerchief. (This process isn’t unique to mucus; blood is the highway for most of your bodily fluids.)”

While this is not the most scholarly site I’ve quoted, it offers a simple explanation. Blood. Think about that. I turned to The Book of Blogs: Moderate Stage IMG_2982Chronic Kidney Disease, Part 1 for help with my explanation.

“Our kidneys are very busy organs, indeed.  They produce urine, remove potentially harmful waste products from the blood, aid in the maintenance of the local environment around the cells of the body, help to stimulate the production of red blood cells, regulate blood pressure, help regulate various substances in the blood {For example, potassium, sodium, calcium and more}, help to regulate the acidity of the blood, and regulate the amount of water in the body. Mind you, these are just their main jobs.  I haven’t even mentioned their minor ones.”

Get it? Kidneys filter the blood. Our kidneys are not doing such a great job of filtering our blood since we have CKD, which means we also have compromised immune systems. Thank you for that little gift, CKD. (She wrote sarcastically.)

Now you have the flu. Now what? Here are some hints taken from Dr. Leslie Spry’s  ‘Flu Season and Your Kidneys’  reprinted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. Dr. Spry is an active member of the Public Policy Committee at the National Kidney Foundation, and, I am honored to FullSizeRender (3)say, a follower on Twitter.

You should get plenty of rest and avoid other individuals who are ill, in order to limit the spread of the disease. If you are ill, stay home and rest. You should drink plenty of fluids …to stay well hydrated. You should eat a balanced diet. If you have gastrointestinal illness including nausea, vomiting or diarrhea, you should contact your physician. Immodium® is generally safe to take to control diarrhea. If you become constipated, medications that contain polyethylene glycol, such as Miralax® and Glycolax® are safe to take. You should avoid laxatives that contain magnesium and phosphates. Gastrointestinal illness can lead to dehydration or may keep you from taking your proper medication. If you are on a diuretic, it may not be a good idea to keep taking that diuretic if you are unable to keep liquids down or if you are experiencing diarrhea. You should monitor your temperature and blood pressure carefully and report concerns to your physician. Any medication you take should be reported to your physician…

National Kidney MonthCheck the National Kidney Foundation itself for even more advice in addition to some suggestions as to how to avoid the flu in the first place.

Every year I decide not to write about the flu again. Every year I do. I think I’m oh-so-careful about my health, yet I end up with the flu every year. Sometimes I wonder if these blogs are for you…or reminders for me. Either way, I’m hoping you’re able to avoid the flu and keep yourself healthy. That would be another kind of miracle, wouldn’t it?IMG_2980

Until next week,

Keep living your life.

Starting the New Year with a Miracle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Miracles Redux

Welcome to the last blog of 2016. I find it hard to believe another year has passed, although I do acknowledge that I’m a bit slower and more new-years-eve-celebrations-live-streamcontent to stay in my office to write rather than run around town. It’s a bit harder to maintain my body, although my mind is doing fine… as long as I don’t have to remember too much at once, that is. Well, my knees may have something to say, but I try to keep them happy with daily exercise and the braces.knee brace

I sincerely hope you enjoyed a joyous Christmas if you celebrate. And that you continue to enjoy Chanukah and Kwanzaa (which starts today) if you celebrate. We’ll be leaving for the Trans-Siberian Orchestra concert as soon as I finish the blog… a gift from us to us and one of the kids for Christmas. On Wednesday, we’ll have our Annual Chanukah Gathering. Our New York daughter will be with us since her Chanukah gift is a plane ticket. Being a two religion family, we celebrate both Chanukah and Christmas.

Before I get to more about creating a miracle, I am proud to announce that Healthline, a trusted health information site,  has named SlowItDownCKD one of The Best Kidney healthlineDisease Blogs of 2016. Talk about being surprised… and honored. Sort of a nice Christmas present, don’t you think? I suppose I can consider the publication of my novel, Portal in Time, my Chanukah present. I didn’t do too shabbily this year.

You know, it’s never too late to give either the novel or one of my Chronic Kidney Disease books as a present. Don’t forget you deserve presents, too.

Okay, on to more about miracles – or Part 2 – as I promised last week.

Unhealthy%20KidneyIf CKD were common knowledge, if those in high risk categories were aware of it, we might have a chance of preventing the disease in those who don’t have it yet and/or slowing down the progression of the decline in kidney function of those who have been already diagnosed.

Exactly how can we do that? On the most basic level, there’s the spoken word. It’s not just the medical community that can talk about the disease. I can as a patient. You can, too, because you know me and I’ve told you about the disease (and/or you suffer from CKD yourself).  This is most effective in areas of the world that do not have access to – or money for – doctors and treatment.  This is where we can prevent more and more of the disease by preventing more and more hypertension and diabetes.

If I tell you what I know about curtailing sodium intake in high blood pressure and you tell me what you know about smoking as it contributes to hypertension, we’ve just shared two important aspects in the prevention of high blood pressure. If I tell you what I know about sugar in diabetes Healthy%20Kidneyand you tell me what you know about carbohydrates and diabetes, we’ve just shared two important aspects in the prevention of diabetes. Then my husband starts sharing what he knows… and your third cousin once removed shares with her East Indian neighbor what her nephrologist told her… and your boss’s secretary shares what his boyfriend learned at his CKD awareness meeting, you’ve got a lot more people aware of what needs to be done about CKD. Sometimes causing a miracle is played out by sharing with people. Think of the miracle this kind of communication on a daily basis can cause.

The people you speak to will share with those they know, those they know will share with others they know until many, many hairmore people become aware of CKD – just as that long ago Clairol hair coloring ad demonstrated how telling someone who tells someone can go on ad infinitum. Simplistic? Yes, but it works…and that’s part of living the life of causing a miracle in CKD.

Then there’s the printed word. If people are aware of CKD books and newspapers, business and educational publications can alert their populations that the disease exists and is lethal, but may be prevented and/or slowed down. Most businesses have wellness components. What perfect vehicles to transform the world’s awareness of CKD.IMG_2979

For example: my four Chronic Kidney Disease books are sold in 106 countries. I have 107,000 readers. This in itself is a miracle, not just for me but for everyone who is in some way connected to the disease. It is not uncommon for one community member to buy the book, then share it with everyone else in their social circle. If there’s a library, the books can be ordered and then shared for free.

These are some of the pieces I’ve written: American Kidney Fund   “Slowing Down CKD –  It Can Be Done”  7/14/16, Dear Annie 10/14, KidneySteps  9/11/13  &  7/4/12, National Kidney Foundation 6/6/13, It Is What It Is 3/9/12, Kevinmd.com 1/1/12, Working with Chronic Illness 1/11/10, KidneyTimes 1/11/10. Bragging? No, just demonstrating it can be done… but I had to cause it to happen by knocking on doors.

I also share my information via this blog. A doctor in a remote village in India prints and translates it to share with whichever patient has the bus fare to make it to the clinic. That patient brings the translation back to his family, friends, neighbors, and whoever else he thinks may be interested. blood drawThis nephrologist’s view is the same as mine: We both need to live a life causing a miracle in Chronic Kidney Disease Awareness by sharing information. People who may not have known Chronic Kidney Disease exists now know via this sharing. Others who have undergone the simple blood and urine tests to diagnose the illness can share that the tests are not painful, other than the initial pinch of the needle for the blood draw. You would be surprised how many people, even in the high risk groups, don’t take the tests because they fear there will be pain involved. No sharing, no awareness. No awareness, no diagnose. No diagnose, no slowing down the disease.

Here are some of the blog and book mentions that have helped in my sharing of the information: Federal Register 9/25/13, The Neuropathy Doctor’s News 9/23/13, The NephCure Foundation 8/21/11, World’s Leading Expert.com 9/11/12, Glendale Community College Gaucho Gazette 8/22/11. These came about without my intervention. So what you share gets shared by others….

I’ve got some more thoughts, but we’ll have to leave them for Part 3 in the New Year. This blog is getting too long and my family is waiting for me.  Happy New Year to each and every one of you. Please be safe if you’re going out to celebrate.

Until next week and the New Year,

Keep living your life!

 

It’s a Miracle!

It’s that time of year again… the time to believe in miracles. There’s the miracle of Mary’s virgin birth at Christmas. And there’s the miracle of the Christmas TreeChanukah oil burning for eight nights instead of the one it was meant to. That got me to thinking about miracles and so, we have a different kind of several part blog beginning today. Consider it my gift to you this holiday season.

Miracles happen every day, too. We just need to take action to make them happen… and that’s what I’d like to see us do with Chronic Kidney Disease by sharing the available information.  This particular miracle is helping to alleviate the fear of needing dialysis and/or transplantation. This particular miracle is helping patients help themselves and each other. This particular miracle is helping doctors appreciate involved patients.

Yet, causing this miracle by sharing information is overlooked again and again. Chronic Kidney Disease, or CKD, is easily diagnosed by simple blood tests and urine tests (as we know), but who’s going to take them if they have no idea the disease exists, is widespread, and may be lethal? By Menorahsharing information, those at high risk will be tested. Those already in the throes of CKD can be monitored and treated when necessary. While CKD is not curable, we know it is possible to slow down the progression of the decline in your kidney function.

According to the National Institutes of Health at http://www.ncbi.nlm.gov/pmc/articles/PMC4112688,

“2014: Worldwide, an estimated 200 million people have chronic kidney disease (CKD).”

Before I was diagnosed, I had never heard of this disease… and apparently I’d had it for quite some time.  Why weren’t people sharing information about this?  Couldn’t that have prevented my developing it? At the time of my diagnose nine years ago, I meant doctors.  I don’t anymore. Nor do I leave causing a miracle by sharing to others.

This is my life. I have had Chronic Kidney Disease for nine years. As a college instructor who taught Research Writing at the time of my diagnose, I researched, researched, and researched again, but the only person I was sharing my research with was the nephrologist who treated me and FullSizeRender (2)monitored my condition. I may have expected a miracle there, but I didn’t get one. Why?

I got to thinking about that and realized he already knew what I told him. That’s when it struck me that if I expected a miracle with CKD, I would have to start sharing this information with the people who need it: the ones who didn’t know, the ones who had just been diagnosed and were terrified, and the families of those with CKD who didn’t know they also might be at risk. I went so far as to bring CKD education to the Native American Communities in Arizona since Native Americans are at high risk. I had the information and had experts willing to come to the communities to share that information.

We all know this is a costly, lethal disease if not caught early and treated… and that it’s not just the elderly who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it. We know CKD can be treated, just not the way those who don’t have it might expect. A diet with restrictions on protein, potassium, phosphorous and sodium may be one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now imagine EXPECTING the miracle of preventing that death by sharing this information. Powerful, isn’t it?

We know the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it.urine container

This is where the miracle I expected in my life began for me. I started speaking with every doctor of any kind that I knew or that my doctors knew and asked them to share the information. They were already experiencing time constraints, but suggested I write a fact sheet and leave it in their waiting rooms since they agreed there’s no reason to wait until a person is in kidney failure and needs dialysis or a transplant to continue living before diagnosing and dealing with the illness.

My passion about producing this miracle multiplied threefold from that point on. So much so that I went one better and wrote a book with the facts. I was convinced we would be able to cause a miracle by sharing information about this disease. My goal was clear: have everyone routinely tested.

Dr. Robert  Provenzano, a leading nephrologist in the United States,  succinctly summed up the problem worldwide.

“Chronic Kidney Disease is an epidemic in the world…. As other countries become Westernized, we find the incidence of Chronic Kidney Disease and end-stage renal failure increases. We see this in India, and in China. We see this everywhere. …”

We repeatedly see diabetes and hypertension cited as the two major causes of CKD. Does your neighbor know this? How about the fellow at the gas bp cuffstation? Ask them what Chronic Kidney Disease is. More often than not, you’ll receive a blank look – one we can’t afford if you keep the statistic at the beginning of this paper in mind. We can cause a miracle to change this.

Sharing can be the cause of that miracle… but that’s not something we can leave to the other guy. We each ARE the other guy. More on this next week.

For now, Merry Christmas, Happy Chanukah, Happy Kwanzaa (somehow implicit in this holiday is the miracle of bringing people together), and every other holiday I’ve inadvertently missed or don’t know about.

portal_in_time_cover_for_kindleI just got word that Portal in Time – my first novel – is available on Amazon.com. Consider that as a holiday gift for those friends not interested in CKD. Of course, I just happen to have four CKD books on Amazon.com for those who might be interested in CKD. Be part of a miracle.IMG_2979

Until next week,

Keep living your life!

Is it CKD? Or Is It Arizona?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My method was ridiculously simple:

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

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

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

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

 

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

Until next time,

Keep living your life!

Then Why Wait?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep living your life!

The Lamp Post and the Kidneys

disabledThis past week, my car and I tangled with a lamp post. My car got the worst of it. Luckily, I was driving very slowly in a parking lot while looking for the Disabled Parking Spots. (Ironic, isn’t it?) All I got were bruises and stiffness. Or did I?

As usual when confronted with something I didn’t know about, I started wondering:  What happened to my kidneys safely buried in my body while my skin turned black and blue from the seat belt and my hand ended up with tendonitis from gripping the steering wheel so firmly?

Do you remember where the kidneys are? Here’s the drawing from the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health which was included in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. You can see that they are internal organs, which means they are not directly under the skin, but protected by layers of fat and muscle (Hmmmm, I usually wish there were more muscle and less fat over them), and other organs.

Location of Kidneys

What is it

According to The University of Michigan Medical School’s Dissector Answers at http://www.med.umich.edu/lrc/coursepages/m1/anatomy2010/html/gastrointestinal_system/kidney_ans.html#a1:

“Besides their peritoneal covering, each is embedded in two layers of fat, with a membrane, the renal fascia, in between the layers. Inside the renal fascia is the perirenal fat, while outside the membrane is the pararenal fat. (The perirenal layer is inside, while the pararenal layer is around the renal fascia.)”

Great! All I needed to know now is what that meant.  We already know from the quote above that perirenal fat is inside the renal fascia, while pararenal fat is outside, but what’s the fascia?

The Medical Dictionary section of the Free Dictionary at http://medical-dictionary.thefreedictionary.com/fascia cleared that up right away:

renal-fascia“a sheet or band of fibrous tissue such as lies deep to the skin or invests muscles and various body organs.”

Wait a minute; what about peritoneal? I had this vague memory of hearing the word before, but not its definition. Just to mix it up a little bit, this time I turned to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=4842, but for the root word peritoneum since the suffix ‘al’ just means relating to and will only confuse the issue. …

“The membrane that lines the abdominal cavity and covers most of the abdominal organs.”

I needed the information on AnatomyZone at http://www.anatomyzone.com/tutorials/location-and-relations-of-the-kidney/ to find out what lies in front of the kidneys.

“… the colon runs in front of the kidney. …. It runs in front of the lower part of the kidney, the inferior pole of the kidney. That’s the hepatic flexure….. the descending part of the duodenum sits in front of the medial part of the kidney.   The descending part of the duodenum is retroperitoneal as well and it sits right up against the kidney….on top of the kidney. This is the suprarenal gland or the adrenal gland.

…. the other side of the colon sits in front of the left kidney…. the stomach and the spleen sitting in front of it. … the end of the pancreas sitting in colonfront of it as well. “

This reads a bit choppy because it is describing an interactive visualization of the kidneys. If you want to find out more and have a little fun with the site, do click through on the site’s URL. I found this even more entertaining than my Concise Encyclopedia of the Human Body (London: Red Lemon Press, 2015) which I can pore over for hours just marveling at this body of ours.

It seems to me that I’ve ignored whatever is behind the kidneys so let’s find out what’s there. Oh, of course…

“The ribs and muscles of the back protect the kidneys from external damage. Adipose tissue known as perirenal fat surrounds the kidneys and acts as protective padding.” Many thanks to another interactive site, Inner Body at http://www.innerbody.com/image_urinov/dige05-new.html#full-description for this information.

By the way, adipose tissue – or perirenal fat – is an energy storing fat. While necessary, too much of this makes us appear fat and can compromise our health. This is the white, belly fat mentioned in conjunction with kidney disease in The Book of Blogs: Moderate Stage Chronic Kidney FullSizeRender (3)Disease, Part 2:

“Other studies have suggested that once diagnosed with kidney disease, weight loss may slow kidney disease progression, but this is the first research study to support losing belly fat and limiting phosphorus consumption as a possible way to prevent kidney disease from developing.  Dr. Joseph Vassalotti, chief medical officer at the National Kidney Foundation  11/3/13”

It seems I’ve developed a sort of pattern here. We’ve looked in front of the kidneys and behind them. What’s above them, I was beginning to wonder. Then I realized I already knew… and so do you if you’ve been reading my work: They lie below the diaphragm and the right is lower than the left because the liver is on the right side above the kidneys. The adrenal glands which were mentioned above are also on top of your kidneys. 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.adrenal

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.”

It looks like my kidneys and I had nothing to worry about.  They’re well protected from the impact of the accident.  *sigh* If only my car had been as well protected…

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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!

 

 

The Nutrition Action Health Letter Article

I am now officially excited.  I’d been getting some comments about this article which I thought wasn’t being published until September. I wondered why. It was my mistake. The article was to appear in the September issue, which I didn’t realize is published before the month begins.

The Center for Science in the Public Interest’s September Nutrition Action Health Letter is out… and younutrition can read it online, too. The URL is http://www.nutritionaction.com/wp-content/uploads/cover-Kidney-Check-How-to-Keep-Yours-Going-Strong.pdf. Many thanks to Bonnie Liebman for such a fine job of reporting and aiding in spreading Chronic Kidney Disease Awareness. It’s long, six pages, so what we have here are excerpts.

 

David White“I didn’t know that I had end-stage renal disease until I was admitted to the hospital in 2009,” says David White, who was then in his mid-40s. “A few days later, I stopped producing urine.”

Doctors told White that he had crashed. “It was scary,” he says. “I went from ‘Something may be wrong’ to ‘Oh my god am I going to die?’ to ‘I have to spend the rest of my life on dialysis.’”

And with four hours of dialysis three times a week, he never felt great.

“People call it the dialysis hangover,” says White, from Temple Hills, Maryland. “You’re so tired that you want to sleep all day after dialysis and most of the following day. And then you gear up for the next treatment.”

And White struggled with his one-quart-a-day limit on fluids. “When you drink too much, moving isn’t comfortable, laying down isn’t comfortable,” he says. “It’s hard to breathe.”

For Gail Rae-Garwood, the news about her kidneys came when she switched to a new doctor closer to herNutrition home in Glendale, Arizona.

“She decided that as a new patient, I should have all new tests,” says Rae-Garwood, now 69. “When the results came in, she got me an appointment with a nephrologist the next day. When you get an appointment with a specialist the next day, you know something is not right.”

Rae-Garwood had chronic kidney disease. “My GFR was down to 39, and apparently had been low for quite a while,” she says. (Your GFR, or glomerular filtration rate, is the rate at which your kidneys filter your blood.) “‘What is chronic kidney disease and how did I get it?’ I demanded,” recalls Rae-Garwood.

Every 30 minutes, your kidneys filter all the blood in your body. Without at least one, you need dialysis or a transplant. Yet most people have no idea how well their kidneys are working. “It’s very common for people to have no idea that they have early chronic kidney disease,” says Alex Chang, a nephrologist at Geisinger Health System in Danville, Pennsylvania.

A routine blood test sent to a major lab—like Quest or LabCorp—typically includes your GFR. If it doesn’t, your doctor can calculate it.

kidney function“A GFR is pretty routine for anyone who has blood work done,” says Chang. “But if you have very mild kidney disease, and especially if you’re older, a doctor might not mention it since kidney function tends to decline as you age.”

Doctors also look for kidney disease by testing your urine for a protein called albumin …. “That’s usually only done if you have high blood pressure or diabetes or some risk factor for kidney disease other than age,” says Chang.

Rae-Garwood’s previous doctor missed that memo. “I had been on medication for high blood pressure for decades,” she explains. “I wonder how much more of my kidney function I could have preserved if I’d known about it earlier.”

***

David White had kidney transplant in 2015. “It’s given me my life back,” he says. “No more dialysis.”

He takes anti-rejection drugs and steroids, and, like Rae-Garwood, he gets exercise and has to watch what he eats.

“I’ve changed my diet radically,” says Rae-Garwood. “I have to limit the three P’s—protein, potassium, What is itand phosphorus. I’m restricted to 5 ounces of protein a day. We have no red meat in the house. Any product above 7 or 8 percent of a day’s worth of sodium I don’t buy.

“And you know what? It’s fine. It’s been nine years now, and I’ve been able to keep my GFR around 50.”

Both patients are now advocates for preventing kidney disease. “I’ve written four books and almost 400 weekly blogs, and I post a daily fact about chronic kidney disease on Facebook,” says Rae-Garwood. White chairs the the MidAtlantic Renal Coalition’s patient advisory committee, among other things among other things.

“Get tested,” urges Rae-Garwood. “Millions of people have chronic kidney disease and don’t even know it. All it takes is a blood and urine test.”

My hope is that as a result of this article, more libraries, medical schools, and nephrology practices will IMG_2982order copies of What Is It and How Did I Get It? Early Stage Chronic Kidney FullSizeRender (3)Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, and SlowItDownCKD 2015. If you have a Kindle, Amazon has two wonderful low cost or free programs that may make it easier for you, your loved ones, and anyone you think could benefit from these books to read them.

This is how Amazon explains these programs:

“Kindle Unlimited is a subscription program for readers that allows them to read as many books as they want. The Kindle Owners’ Lending Library is a collection of books that Amazon Prime members who own a Kindle can choose one book from each month with no due dates.”

Barnes and Noble doesn’t have any such programs, but they do offer discount deals daily, which you can use to purchase any book.IMG_2980

I urge you to help spread awareness of Chronic Kidney Disease in any way you can. Here’s another quote from the article that may help you understand why:

“One out of ten adults have chronic kidney disease. Most don’t know it because early on, kidney disease has no symptoms. And because the risk rises as you age, roughly one out of two people aged 30 to 64 are likely to get the disease during their lives….”

Until next week,

Keep living your life!

Not Quite the Bionic Woman

knee braceI have a knee brace.  The little sucker goes from mid-calf to mid-thigh… and it’s going to have a twin for the other knee.  I’m sort of disappointed because I thought it was going to be solely for when I exercise daily.  Only that’s not true; it’s going to be for eight hours a day. How did I so misunderstand what the doctor was saying?

More importantly, what the heck is this for?  I double checked this with the rheumotologist: it’s to postpone knee surgery as long as possible. As I understand it, there’s even a possibility of avoiding the surgery all together. I like that option. It’s also meant to minimize the pain. I like that, too.

The culprit here is osteoarthritis, which has worsened with age.  Lucky me. All those years of dance, judo, Tai Chi, Aikido, and stage movement blueshave done a job on my knees. That doesn’t mean I stop dancing or exercising, though. It also doesn’t mean I start taking more medications, either. Hey! I have Chronic Kidney Disease.

Let’s do our usual back tracking here. First question: What is osteoarthrosis of the knee? The American Academy of Orthopaedic Surgeons has a wonderfully clear explanation with an accompanying diagram:

“Osteoarthritis is the most common form of arthritis in the knee. It is a degenerative, ‘wear-and-tear’ type of arthritis that occurs most often in people 50 years of age and older, but may occur in younger people, too. In osteoarthritis, the cartilage in the knee joint gradually wears away. As the cartilage wears away, it becomes frayed and rough, and the protective space between the bones decreases. This can result in bone rubbing on anatomy of the kneebone, and produce painful bone spurs. Osteoarthritis develops slowly and the pain it causes worsens over time.”

You can read more about osteo and other types of knee arthritis on their site at http://orthoinfo.aaos.org/topic.cfm?topic=a00212.

Well, that explains why the knees clicking isn’t a source of amusement anymore and why getting on my knees to play with sweet Ms. Bella is now agony.

As for medications, sure NSAIDS will help… except I can’t take them. Here’s a reminder why not from What Is It and How Did I Get It? FullSizeRender (2)Early Stage Chronic Kidney Disease:

 “NSAID: 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.”

I’ll pass on those. I do take Limbrel, though. That’s not a NSAID and does help with the pain of arthritis. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I defined Limbrel:

“a food medication {By prescription only} to deal with the pain preventatively.“

So now we understand why the knee braces (and the Limbrel). They – the braces – supposedly fit under your clothes. Uh, no, not if you’re a woman IMG_2982who wants to wear anything remotely stylish or not live in longish skirts. I could not get my capris or slacks on over the brace. Living in Arizona, longish skirts may work in the winter time, but they are too damned hot for the summer… which lasts from early May to late October.

So, how do these babies work you ask. I went over to the manufacturer’s website for the answer to that one.

“The Unloader One applies a gentle force design to reduce the pressure on the affected part of the knee, resulting in reduction in pain and thus allowing the patient to use the knee normally and more frequently.

Untreated, the cartilage will gradually wear down. The increased pressure on the underlying bone is the cause of the pain experienced by most osteoarthritis (OA) sufferers. The wear and tear on the cartilage will gradually cause the knee to become painful and feel stiff when moving.”

You can read more about knees on their website, but remember this is the site of a product for sale:  http://www.ossur.com/oa-solutions/unloader-uploaderbraces-and-osteoarthritis/knee-pain/unloader-braces-and-oa-knee-pain

I wanted to know a bit more about how the knee works. The National Institute of Health at http://www.niams.nih.gov/Health_Info/Knee_Problems/default.asp explained in detail.

Bones and Cartilage

The knee joint is the junction of three bones: the femur (thigh bone or upper leg bone), the tibia (shin bone or larger bone of the lower leg), and the patella (kneecap). …The ends of the three bones in the knee joint are covered with articular cartilage, a tough, elastic material that helps absorb shock and allows the knee joint to move smoothly. Separating the bones of the knee are pads of connective tissue called menisci (men-NISS-sky). …The two menisci in each knee act as shock absorbers, cushioning the lower part of the leg from the weight of the rest of the body as well as enhancing stability.

Muscles

There are two groups of muscles at the knee. The four quadriceps muscles on the front of the thigh work to straighten the knee from a bent position. The hamstring muscles, which run along the back of the thigh from the hip to just below the knee, help to bend the knee.

Tendons and Ligaments

The quadriceps tendon connects the quadriceps muscle to the patella and provides the power to straighten the knee. The following four ligaments connect the femur and tibia and give the joint strength and stability:

  • The medial collateral ligament, which runs along the inside of the knee joint, provides stability to the inner (medial) part of the knee.LateralKneeDia_cropped1
  • The lateral collateral ligament, which runs along the outside of the knee joint, provides stability to the outer (lateral) part of the knee.
  • The anterior cruciate ligament, in the center of the knee, limits rotation and the forward movement of the tibia.
  • The posterior cruciate ligament, also in the center of the knee, limits backward movement of the tibia.

The knee capsule is a protective, fiber-like structure that wraps around the knee joint. Inside the capsule, the joint is lined with a thin, soft tissue called synovium.”

CKD brings a new way of thinking about every part of your body… even your knees. Think about it.
FullSizeRender (3)

IMG_2980

Until next week,

Keep living your life!

Teachers Teach

Many of you have asked that I post the interview by The American Federation of Teachers. I aim to please, so here it is.

 Gail Rae-Garwood

From NYC teacher to international health advocate

Posted August 9, 2016 by Liza Frenette

Gail Rae-Garwood talks and writes all the time about slowing down — but she’s not referring to her lifestyle speed. She’s talking about putting the brakes on Chronic Kidney Disease.

When this retired high school English teacher and United Federation of Teachers member was diagnosed with CKD in 2008, she was shocked. A new doctor detected unhealthy levels for kidney functioning in routine blood and urine workups. She was sent to a nephrologist. “I didn’t know what it was and what it meant,” she said. “I was terrified and thought I had nowhere to turn.”

She began researching and finding ways to manage this inflammatory disease through a specialized, calibrated diet, exercise, stress reduction and proper sleep. Then she realized she wanted to help others steer toward solutions. Rae-Garwood writes a weekly blog, a daily post and has published four books designed for people with CKD. She answers questions from around the world. She has spoken at coffee shops, Kiwanis Clubs, independent bookstores and senior citizen centers. She’s been a guest blogger for the American Kidney Fund, which promotes prevention activities AKF logoand educational resources, and provides financial assistance for clinical research and for kidney patients who need help with dialysis and transplants.

While she is careful about getting enough sleep and eating right, Rae-Garwood does not let any waking time slip by unnoticed. She has been interviewed on Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Help. She has been interviewed for the Wall Street Journal’s Health Matters and The Center for Science in The Public Interest.

Her action is not all talk. She also puts on the sneakers: In addition to her regular walks for health, she hustled up a team for the National Kidney Foundation of Arizona Kidney Walk.

By now, even her heart is probably kidney shaped.

Rae-Garwood also organized several talks at the Salt River Pima-Maricopa Indian Community, not far from where she lives in Arizona.

Blacks, Hispanics, Native Americans and Asians are more prone to CKD, she said. “I wanted to bring awareness everywhere I could.”NKF-logo_Hori_OB

Education is vital because so many people are unaware they even have the disease. Rae-Garwood is one of many who did not have any symptoms. “Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before (CKD) was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.”

And CKD, left unchecked and untreated, can wreak havoc and death. According to the American Association of Kidney Patients, “The increase of kidney disease is now reaching epidemic proportions. The rates are even higher among racial and ethnic minorities. Chronic kidney disease can progress to end-stage renal disease and the need for dialysis or a kidney transplant.”

Rae-Garwood’s goal is to educate people and help them with their health. “You can slow down the progress of the decline of kidney function,” she said.

And she is the very living proof that people want to see.

kidneys5“I have been spending a lot of time on my health and I’m happy to say it’s been paying off. There are five stages. I’ve stayed at the middle one for nine years and even improved my health. That’s what this is about. People don’t know about CKD. They get diagnosed. They think they’re going to die. Everybody dies, but it doesn’t have to be of CKD. I am downright passionate about people knowing this,” she said.

After her first book was published, Rae-Garwood received an e-mail from a doctor in India. He said his patients were extremely poor and could not afford the book – yet the information she wrote about was so important to them.

“He asked how I could help. I thought: ‘I could write a blog!’” she said. Her efforts began by putting her book chapters on the blog, piece by piece. The doctor in India printed them and gave them to his patients. Newer blog posts have more up-to-date information, keeping patients informed.

Her informational blog has 106,000 readers from 107 different countries, she said, based on a report from WordPress. On her blog, Rae-Garwood answers questions from readers, lists books about CKD, reports on events, lists support groups, etc. She writes about things that have worked for her, such as using a stationary bike and stretching bands, and walking  — and cautions readers to seek advice from their doctor.

The year-round outdoor climate in Arizona helps Rae-Garwood stay active. While she loved living on Staten Island, she said she owned an old Victorian that she could not afford to fix up in retirement. With an arthritis condition, she also noticed that she was “becoming a bit of a shut-in in the winter.” So she moved to the southwest two months after retiring.

GFRRae-Garwood is not letting any of that sunshine go to waste. Since her 2008 diagnosis. she’s been driving on a steady road to wellness and spreading awareness like a modern day Johnny Appleseed. In her retirement from teaching, she has devoted much time to writing, speaking and teaching about how to thwart the disease. The skills she developed in 32 years as a teacher in Brooklyn, Staten Island, Queens and Manhattan have served her well in this new role as health advocate.

Her own four self-published books are “SlowItDownCKD 2015,” “The Book of Blogs, Moderate Stage Kidney Disease Part 1,” “The Book of Blogs, Moderate Stage Kidney Disease Part2” and “What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.” The books are available online at Barnes and Noble and Amazon.

For more information on the disease and this active, 69-year-old retiree, check out https://gailraegarwood.wordpress.com.

I hope that this interview has been both enjoyable and informative. It’s how I live my life…

Until next week,

Keep living YOUR life!

Hair Today, Gone Tomorrow (Heaven Forbid)

I have noticed my hair coming out in alarming amounts when I wash it in the shower. At first, I thought, “I don’t brush it so this must be the way I shed dead hairs.”  Sure, Gail, keep telling yourself that. I have always had a glorious mane. No more. You can see more and more of my scalp with each shower. OMG! (Forgive the cigarettes in the modeling shot. It was a long, long time ago.)IMG_2944early shots

I’ve read pleas for help from Chronic Kidney Disease patients about just this issue…but they were dialysis patients. I’m Stage 3, more often with a GFR in the low 50s rather than the low 30s. Could it be my Chronic Kidney Disease causing the hair loss – I’ll feel better if we called it ‘hair thinning’ – or simply my almost seventy decades on Earth?

FullSizeRender (2)I can appreciate those of you asking, “Her what is in the low 50s?” Let’s take a peek at What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for a definition of GFR.

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

Of course, now you want to know, and rightfully so, what those numbers mean. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I included a helpful chart from DaVita along with some of my own comments which explains.

“Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:FullSizeRender (3)

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

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

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

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

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

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

GFR

As for the hair itself, I wondered what it’s made of so I started googling and came up with Hilda Sustaita, Department Chair of Cosmetology at Houston Community College – Northwest’s, definition. You can read more of her insights about hair at http://www.texascollaborative.org/hildasustaita/module%20files/topic3.htm

“Hair is made of protein which originates in the hair follicle.  As the cells mature, they fill up with a fibrous protein called keratin. These cells lose their nucleus and die as they travel up the hair follicle. Approximately 91 percent of the hair is protein made up of long chains of amino acids.”

keratinUh-oh, Chronic Kidney Disease patients need to lower their protein intake. I’m constantly talking about my five ounce daily limitation. I remembered quoting something about protein limitation in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and so looked for that quote. This is what I found.

“This is part of an article from one of DaVita’s sites.  You can read the entire article at http://www.yourkidneys.com/kidney-IMG_2982education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189. …

Depending on what stage of Chronic Kidney Disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. … The CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.”

But I have friends near my age without CKD whose hair is thinning, too. They’re not on protein restricted diets, so what’s causing their hair thinning?

According to WebMD at http://www.webmd.com/beauty/aging/does-your-hair-make-you-look-old,

“’The diameter of the hair shaft diminishes as we get older,’ explains Zoe Draelos, M.D., clinical associate professor of dermatology at Wake Forest hair follicleUniversity School of Medicine. That means you may have the same number of follicles, but thinner individual strands will make it look like there’s less volume. (They’re also more prone to break, and since hair growth slows as you age, the damage becomes more obvious.)

Even if you do see extra hairs in your brush or in the shower drain, you don’t necessarily need to worry. Although 40 percent of women experience hairsome hair loss by menopause, shedding around 100 strands a day is normal, reports Paul M. Friedman, M.D., clinical assistant professor of dermatology at the University of Texas Medical School at Houston.”

So it may be my CKD that’s causing the hair thinning or it may not. Either way, I wanted to know what to do about it. Dr. Doris Day (I kid you not.) has other suggestions than protein as she discusses in a New York Times article at http://www.nytimes.com/2014/01/23/fashion/Hair-Aging-thinning-dry-dull.html.

Dr. Doris Day, a dermatologist in New York, agreed that the right foods are necessary for healthy hair.

‘I believe that inflammation is negative for the hair follicle, that it can accelerate stress shedding and compromise growth,’ she said. She suggests eating pomegranate, avocado, pumpkin and olive oil, and herbs like turmeric, mint and rosemary.”

You do remember that CKD is an inflammatory disease, right? Hmmm, better check with your renal nutritionist before you start eating pomegranates or pumpkin. They’re on my NO! list, but yours may be different from mine.IMG_2980

By the way, I’ve noticed there are no reviews for SlowItDownCKD 2015 on either Amazon.com or B&N.com. Can you help a writer out here? Just click on either site name to leave a review. Thanks.

Until next week,

Keep living your life!

Bridging the Gap…

Which gap? The anion. What’s that, you say.

“The anion gap deals with the body’s acidity. A high reading for the anion gap could indicate renal failure.”

Book CoverThat’s what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. But you know what? It’s just not enough information any more. Why? I’m glad you asked.  Oh, by the way, if you want to check your own reading look in the Comprehensive Metabolic Panel part of your blood tests, but only if your doctor requested it be tested.

I mentioned a few blogs back that I returned to a rheumatologist I hadn’t seen in years and she chose to treat me as a new patient. Considering how much had happened medically since I’d last seen her, that made sense to me and I agreed to blood tests, an MRI, and a bone density test.

The only reading that surprised me was an abnormally high one for anion gap. The acceptable range is 4 – 18. My reading was 19.  While I have Chronic Kidney Disease, my kidneys have not failed (Thank goodness and my hard work.) In addition, I’ve become quite aware of just how important acidity and alkaline states are and have been dealing with this, although apparently not effectively.

MedFriendly at http://www.medfriendly.com/anion-gap.html – a new site for me written by Dr. Dominic Carone for the express purpose of simplifying complex medical terms for the lay person – explains it this way:diabetes equipment

“…. Too high of an anion gap level can mean that there is acidosis (too much acid in the blood) due to diabetes mellitus. The high anion gap level can also be due to lactic acidosis, in which the high level of acid is due a buildup of a substance called lactic acid. … A high anion gap can also be due to drug poisoning or kidney failure. …When the anion gap is high, further tests are usually needed to diagnose the cause of the problem.”

Ah, I remember writing a bit about acidosis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. It had to do with DIGITAL_BOOK_THUMBNAILfruits and vegetables.

“’After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. Our findings suggest that an apple a day keeps the nephrologist away,’ study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.

Apparently, some CKD suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

Okay, I like fruit and I like vegetables. Ummm, will my limitation of three servings of each within the kidney friendly fruit and vegetable lists do the trick, I wonder. Looks like I’ll be questioning both the rheumatologist and the renal dietician about that.

Recently I’ve written about alkaline being the preferred state of a CKD patient’s body. That is the antithesis of an acid body state. Years ago, Dr. Richard Synder was a guest blogger here and also interviewed me on his radio show. He is the author of What You Must Know about Kidney Disease and a huge proponent of alkaline water.  Here’s what he had to say about that (also from Part 1):

“I have taken alkaline water myself and I notice a difference in how I feel. Our bodies are sixty percent water. Why would I not want to put the best517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_ type of water into it? Mineralized water helps with bone health.  In alkalinized water, the hydroxyl ions produced from the reaction of the bicarbonate and the gastric acid with a low pH produce more hydroxyl ions which help buffer the acidity we produce on a daily basis. (Me interrupting here: During our visit last Monday, I noticed that my extremely health conscious, non-CKD, Florida friend drinks this.)

Where are these buffers? In the bones and in the cells, as well as some extracellular  buffers. You  are  helping lower  the  total  body  acidity  and decreasing the inflammation brought on by it. You do this early on so that you don’t have a problem with advanced acidosis later. Why wait until you are acidotic before doing something?”

Notice his comment about lowering body acidity and decreasing inflammation.  We already know CKD is an inflammatory disease.  There was Digital Cover Part 2 redone - Copysomething to this. I went back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 to tease it out.

“‘Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would).’

You can read the entire article at http://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

Inflammatory?  Isn’t CKD an inflammatory disease? I went to The National Center for Biotechnology Information, which took me to the National Library of Medicine and finally to a National Institute of Health study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3332073/   for the answer.

‘The persistent inflammatory state is common in diabetes and Chronic Kidney Disease (CKD).

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.’”

Phosphorous? Once we have CKD, we do have phosphorous restrictions. But I have never had high phosphorous readings.  Maybe I should be exploring an abundance of lactic acid as a cause of the high anion gap reading instead.

According to Heathline.com,

adam_liver_8850_jpg“Lactic acidosis occurs when there’s too much lactic acid in your body. Many things can cause a buildup of lactic acid. These include chronic alcohol use, heart failure, cancer, seizures, liver failure, prolonged lack of oxygen, and low blood sugar. Even prolonged exercise can lead to lactic acid buildup.”

I’m definitely barking up the wrong tree here.

Wait a minute. I recently started using a BiPAP since I have sleep apnea and wasn’t exhaling enough CO2. That could cause acidosis, but it would be respiratory acidosis. Say, a basic metabolic panel would expose that. Nope, that’s not it either since my CO2 levels were normal.

It looks like this is going to be one of those blogs that asks more questions than it answers. I do have an appointment with the rheumatologist on the 20th and will ask for answers then.

Until next week,

Keep living your life!SlowItDownCKD 2015 Book Cover (76x113)

A Cautionary Tale

Last week, I found myself crushed for time: a friend was coming to visit from Florida, we had a Father’s Day brunch at our house, there were Ave Qtheater tickets, one of the kids needed immediate aid since she was in her own time crunch, the list goes on and on. Taking that into account and not wanting to add that old demon ‘stress’ to the list, I thought I’d do a quick, easy blog about acupuncture/acupressure and Chronic Kidney Disease.

But while researching I discovered a number of sites with online doctors and changed my topic immediately. The ones I clicked on were:

I’m sure there are more, but rather than be an alarmist, I want to be an explainer.

Explainer of what you ask. Not acupuncture or acupressure.  There’s a discussion of how acupressure works in the May 4th blog in SlowItDownCKD 2015 Book Cover (76x113)SlowItDownCKD 2015.  Acupuncture works on the same principle, but using very fine needles rather than pressure. I happily and confidently made use of both before my CKD diagnose and only ceased my treatments when the senior acupuncturist working on me told me these treatments would not help with the CKD. That was over nine years ago. He may have changed his opinion since then.

I want to explain why online doctors are not such a great idea. I can practically see some of you rolling your eyes at me while others are thinking, “Why not?” Okay, maybe they’re legal, but are they ethical? I found a fairly straight forward abstract on ResearchGate which states:

“…online medical consultations pose greater dangers to patients compared to traditional off-line consultations…. while new technologies may aid doctors in making better diagnoses at a distance, they often bring new concerns.”

You can read more about this yourself at https://www.researchgate.net/publication/228234723_Online_Medical_Consultations_Legal_Ethical_and_Social_Perspectives

arthritisI find myself struggling here. I am all in favor of online doctor summaries by your doctors, test reports from your labs, and general medication explanations from the internet. However, I simply cannot understand how someone who has never met you, someone who has not examined your body, someone who has never spoken with you can advise you on your health.

I’ve mentioned before that I have psoriasis, arthritis, neuropathy, sleep apnea, and probably a host of other as-yet-undiagnosed-inflammatory based diseases (This might be a good time to reread last week’s blog about inflammation caused disease. Connected) How can someone who’s never met me take all of this into account when dealing with my health?

A perfect example of what I’m talking about is from the IMPRESSIONS section of my rheumatologist’s recent report,

“This is a very complex patient that presents today with generalized myalgias and arthralgia….Her health history is complicated by carpal tunnel syndrome, neuropathy and chronic kidney disease, stage 3.”

She has not missed a trick. Myalgia, according to the Medical Dictionary at http://medical-dictionary.thefreedictionary.com/myalgia is muscular pain. The Mayo Clinic at http://www.mayoclinic.org/symptoms/joint-pain/basics/definition/sym-20050668 tells us arthralgia is joint pain.  So my muscles and joints hurt. Without seeing me, without testing my joints and muscles, without seeing if the joints are disfigured or the muscles flaccid (for example) how could she help me?

I’m not one to take pain killers, especially NSAIDS which are defined in the glossary of What Is It and How Did I Get It? What is itEarly Stage Chronic Kidney Disease.

“NSAID: 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.”

So I have pain and I can tolerate it. I can’t help but wonder what an online doctor would diagnose. I decided to become a test case. I contacted an online doctor from one of the sites listed above. This is the transcript of that online chat, errors and all.

Welcome! This is a real online-doctor, not a robort. If you have any questions on kidney disease, feel free to type your questions, you will surely         get reply. No consultation fee.

If the online doctors are all busy and you can’t get response for a long time, you can contact us by phone or email. (Contact information                       followed.)

renal-onlinedoctor: Hello, I am renal-onlinedoctor, I am very glad to talk with you!

You: I have pain. What do I do about it?

renal-onlinedoctor: hello, your age and gender?

You: 69 female

renal-onlinedoctor:  ok, what is the current kidney function or creatinine level? do you knowonline doc

You: 50%

renal-onlinedoctor:  ok, Any symptoms? foamy urine, swelling, fatigue, back pain, anemia, itching,  etc

You: Just joint and muscle pain.

renal-onlinedoctor: i see. Do you have Diabetes, high blood pressure, or other problem?

You: HBP, neuropathy, arthritis, psoriasis

renal-onlinedoctor:  ok, What are the current medicines or treatment?

You:  Only hbp meds and arthritis meds.

renal-onlinedoctor: okay  i see. I’d like to send you related info and advice. What is your Email address?

At this point, I ended the chat since I thought I might be deluged with emails if I responded.  Have I proven anything? Only that the online portion of dealing with an online doctor is extremely general.

Where are the questions about my weight? As I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Keeping your weight down is one of the ways to help retard the progression of the disease.  How? By not allowing yourself to become obese. Obviously, if you keep gaining weight, you can become obese.  Obesity is one of the contributing factors for developing diabetes.  Diabetes may lead to, and complicates, the treatment of, CKD.”IMG_1398

And what about exercise? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I included the following from the American Kidney Fund:

“Exercise can help you stay healthy.  To get the most benefit, exercise for at least 30 minutes, 5 days of the week.”

Yes, it is possible the online doctor may have included such information in the emails(s) he wanted to send me, but how specific to my unique, complex medical situation would they have been… or how specific to yours?

Until next week,

Keep living your life!

Connected

dictionaryFull Definition of connected from the Merriam-Webster Dictionary

 1:  joined or linked together

2:  having the parts or elements logically linked together <presented a thoroughly connected view of the problem>

3:  related by blood or marriage

4:  having social, professional, or commercial relationships <a well-connected lawyer>

5: of a set:  having the property that any two of its points can be joined by a line completely contained in the set; also:  incapable of being separated into two or more closed disjoint subsets

Growing up in New York, I often heard the word used to suggest someone was associated with the Mafia.  You know, like you see in gangster movies. But, that’s not what today’s blog is about. It’s about the connection among all the chronic ailments you have. That would be the second definition.

Before we start, I need to remind you that I’m not a doctor and have never claimed to be one. This is my thinking from my research. This blog was sparked by a conversation on the Facebook page Stage 3 ‘n 4 CKD Kidneybeaners Gathering Place and Robin Rose who got me to thinking about the connection between CKD and inflammation. Maybe it will give you something to think about, too.

PubMed, part of the U.S. National Library of Medicine, National Institutes of Health at http://www.ncbi.nlm.nih.gov/pubmed/19083024 tells us:banner-nihlogo

“Inflammation is the response of the vasculature or tissues to various stimuli. An acute and chronic pro-inflammatory state exists in patients with chronic kidney disease (CKD), contributing substantially to morbidity and mortality. … Inflammation contributes to the progression of CKD by inducing the release of cytokines and the increased production and activity of adhesion molecules, which together contribute to T cell adhesion and migration into the interstitium, subsequently attracting pro-fibrotic factors. Inflammation in CKD also causes mortality from cardiovascular disease by contributing to the development of vascular calcifications and endothelial dysfunction. … “

In that one quotation, you have the definition of inflammation and its causes. I thought I’d try easing into this difficult explanation.

DIGITAL_BOOK_THUMBNAILIn The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I accepted the connection, but without thought:

“And to answer your question about what colon cancer has to do with Chronic Kidney Disease, you have to remember you are medically compromised already. Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.”

That’s two chronic diseases caused by inflammation: CKD and colon cancer. There are more, many more.

By the time I wrote The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I was aware that sinusitis is another inflammatory disease.

“According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842:Digital Cover Part 2 redone - Copy

‘The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.’”

That’s three chronic diseases caused by inflammation: CKD, colon cancer, and sinusitis. But there are more, many more.

Last year, I wrote SlowItDownCKD 2015 and included this information:

“Another standby, WebMD, at http://www.webmd.com/a-to-z-guides/understanding-bladder-infections-basic-information explains:

‘Bladder infections are known as cystitis or inflammation of the bladder. They are common in women, but very rare in men. More than half of all women get at least one bladder infection at some time in their lives. However, a man’s chance of getting cystitis increases as he ages, due to in part to an increase in prostate size….”

SlowItDownCKD 2015 Book Cover (76x113)That’s four diseases caused by inflammation: CKD, colon cancer, sinusitis, and cystitis. But there are more, many more.

According to MedicineNet at http://www.medicinenet.com/psoriasis/article.htm :

“Psoriasis is a noncontagious skin condition that produces plaques of thickened, scaling skin. The dry flakes of skin scales are thought to result from the excessively rapid proliferation of skin cells triggered by inflammatory chemicals produced by specialized white blood cells called lymphocytes. Psoriasis commonly affects the skin of the elbows, knees, and scalp.”

That’s five diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, and psoriasis. But there are more, many more.

Let’s not forget rheumatoid arthritis. Arthritis.com at http://arthritis.com/rheumatoid_arthritis_symptoms tells us:

“Rheumatoid arthritis (RA) is an autoimmune disease where the body’s immune system attacks normal joint tissues, causing inflammation of the joint lining.

rheumThis inflammation of the joint lining (called the synovium) can cause pain, stiffness, swelling, warmth, and redness. The affected joint may also lose its shape, resulting in loss of normal movement. RA is an ongoing disease, with active periods of pain and inflammation, known as flares, alternating with periods of remission, when pain and inflammation disappear.”

That’s six diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, psoriasis, and rheumatoid arthritis. But there are more, many more.

I wouldn’t lose hope even though inflammation seems to be the common thread in chronic disease, though. According to an article in last year’s Blood Purification Journal at https://www.karger.com/Article/FullText/368940 , simple lifestyle modifications can help with inflammation:

“Chronic inflammation should be regarded as a common comorbid condition in CKD and especially in dialysis patients. A number of interventions have been proven to be safe and effective in well-designed clinical studies. This includes such inexpensive approaches as modification of physical activity and dietary supplementation. “

For example:  Dr. Richard Synder, O.D.,  suggested an alkaline/anti-inflammatory based diet when he guest blogged.

If you know an expert in the field of Chronic Kidney Disease and inflammation, let me know who that is so I can contact them to ask if they’d like to guest blog for us.

I know you each have a great deal more to say about Chronic Kidney Disease and inflammation… and so do I, so before you protest that this isn’t all there is to the topic: you’re right, but one weekly blog can only go so far. Please feel free to comment about other inflammatory diseases and how they’re affecting your CKD. I only mentioned six of them.

Until next week,Book Cover

Keep living your life!

Maybe This One?

Hi y’all! I’m still deep in the heart of Texas and will tell you about it next week . My friend Beth, a fellow Landmark graduate and the originator Texasof the Facebook page Morning Gratitude, offers a product  I am eager to explore this week. She is excited about its health and weight loss benefits. This seems to be the national pastime these days, but I must say each person I’ve spoken with is delighted with the results of their products… but they don’t have Chronic Kidney Disease.

You might remember that last November I spent the month writing about different products. They sounded good, healthy, and I wondered if I could use them. The answer? No, no, no, and no. They were either way out of the guidelines for phosphorous, protein, potassium, and/or sodium on my renal diet or they were out of guidelines for the pre-diabetic diet I’ve incorporated with my renal diet.  That incorporation took me over a year to figure out so there was no way I was going to violate it. I have been having some success slowly losing weight and bringing my blood sugar in line by cutting out sugar and most complex starches, as well as continuing to exercise. (Yes, that’s a not at all veiled hint.)

Beth, a friend for three years is so happy with her brand – Plexus Worldwide – that she’s become a distributor. Similar to some of the other brands I explored for CKD patients in SlowItDownCKD 2015, Plexus Worldwide offers many different products. I took an in-depth look at the one that seemed to be the basic product: Plexus 96.

According to Beth’s Plexus website at http://shopmyplexus.com/bethbetcher/products/block.html, this particular product contains alpha lipoic acid, chlorogenic acid, garcina cambogia, whey protein, green lipped mussel, aloe vera, and grape seed extract. Stop. What is chlorogenic acid? Anyone? No one knows? Let’s find out together then.

Plexus96 VanillaThis ingredient is a miracle according to the internet. It supposedly helps you lose weight, is an antioxidant, cleanses the liver… shall I go on? I liked almost everything I read about it except that it is not yet approved by the Food and Drug Administration. I never used to care about that. Now I have CKD, so I do.  Why? If a supplement is not approved, there’s no way to know how to adjust the dosage for your (and my) poorly performing kidneys.

In addition, the UK Medicines Information (UKMi) pharmacists for NHS healthcare professionals published the following finding on April 8, 2013:

“Limited laboratory studies appear to suggest that chlorogenic acid can cause liver or kidney changes. Until more is known, it would be prudent to avoid GCE in patients with pre-existing liver or kidney disease.” *GCE is Green Coffee Extract, the source of chlorogenic acid.

Right out of the gate, this is not a product for people with CKD. I would go on, but I think it might be better to explore another of Plexus’s products. You know what they say, ‘One bad apple doesn’t spoil the bunch.’

I liked the sound of the Plexus Slim. When I looked at the ingredient list, the first thing I saw was chlorogenic acid. We know we can’t have this, but plexus slimlet’s look at one more ingredient just for the heck of it. Here’s one I often hear about: garcinia cambogia. I went directly to their website at http://garciniacambogia.org/garcinia-cambogia-side-effects/ to look for possible side effects. Uh-oh:

“Increases risk for rhabdomyolysis, a skeletal muscle disease that causes the muscles to release proteins into the bloodstream leading to kidney malfunction.”

Ladies and gentlemen, our protein intake is restricted because we have CKD. Why would we take a chance on increasing the protein in our bodies? What is itHere’s a reminder from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease about why we need to limit our protein.

“So, why is protein limited? One reason is that it is the source of a great deal of phosphorus. Another is that a number of nephrons were already destroyed before you were even diagnosed. Logically, those that remain compensate for those that are no longer viable. The remaining nephrons are doing more work than they were meant to. Just like a car that is pushed too hard, there will be constant deterioration if you don’t stop pushing. The idea is to stop pushing your remaining nephrons to work even harder in an attempt to slow down the advancement of your CKD.  Restricting protein is a way to reduce the nephrons’ work.”

Beth did tell me she didn’t know if Plexus would be good for Chronic Kidney Disease patients. Okay, we’ll look at just one more product before we call it a day. The name drew me to the product and the ingredient silica turned me away again. I’m referring to Plexus X Factor which is described on the website in the following manner.

“Plexus X Factor is a turbocharged multivitamin and antioxidant supplement with a never-before-seen formulation of a patented aloe blend and New Zealand Blackcurrant of which results in vastly improved absorption and assimilation for optimal nutrition and wellness protection.”

Wait a minute. I remember having read something about silica. It wasn’t complimentary. Found it! It was listed under Side Effects and Precautions Label-XFactorof Silica Supplements along with a warning that this is not FDA approved. The address for the article is http://www.newhealthguide.org/Silica-Supplements.html.

“Kidney Function. Some medical teams have also expressed concerns that using silica supplements for a prolonged period of time may cause severe kidney trouble. People who take these supplements have reported kidney stones and medical professionals believe it may be because of a buildup of extra silica within the body as only small quantities are required for proper bodily functions. General kidney deterioration can also occur over time if there is excess silica in the body and this condition is irreversible.”

Are you getting the feeling that none of these new products for health improvement and/or weight are acceptable for CKD patients? I am and it has to do with the unregulated herbs that may cause or worsen kidney damage. What do you say we quit while we’re ahead? Of course, those without CKD need to decide for themselves if this is something they’d like to try.IMG_1398

Until next week,

Keep living your life!

If Only It Had Been an April’s Fools Joke

I thought it was a mean April Fool’s joke, but it wasn’t. I thought I’d heard wrong, but I hadn’t. I thought this was a mistake, but it wasn’t. Both of my brothers have Parkinson’s Disease. Now another non-blood family member had just been diagnosed with the same disease… out of the blue, unexpectedly, seemingly impossibly.

PD – Parkinson’s Disease in this case, not to be confused with Peritoneal Dialysis – is not only a genetic driven disease, but sometimes an environmentally driven one. This relative had been in Viet Nam. This relative had had the job of patrolling the areas of the jungle that had been saturated with Agent Orange to defoliate for better visibility. He’d done that every 15 days for over a year. 45 years later, he’s been diagnosed with PD. A coincidence? Not according to his neurologist who immediately told him to file disability papers with the Veterans’ Administration based on this information.

agent orangeMy mind was tripping over itself trying to explain this all to you – and to me. I needed to know just what this Agent Orange was. Dictionary.com at http://www.dictionary.com/browse/agent-orange?s=t explained:

“a powerful herbicide and defoliant containing trace amounts of dioxin, a toxic impurity suspected of causing serious health problems, including cancer and genetic damage, in some persons exposed to it and birth defects in their offspring: used by U.S. armed forces during the Vietnam War to defoliate jungles.”

Dioxin? What’s that? It sounded familiar, but I couldn’t quite remember. I wanted a definition I could understand so I jumped right over to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=15798.

“One of a number of poisonous petroleum-derived chemicals which are produced when herbicides (substances used for killing plants) are made or when plastics are burned. Dioxins are chemically dibenzo-p-dioxins….”

Poisonous. That made me wonder what this poison could do to a human body. This is the list of those possibilities I found on the Veterans’ Administration’s Agent Orange website at http://www.publichealth.va.gov/exposures/agentorange/conditions/index.asp

AL Amyloidosis, A rare disease caused when an abnormal protein, amyloid, enters tissues or organs

Chronic B-cell Leukemias, A type of cancer which affects white blood cellsdioxin

Chloracne (or similar acneform disease), A skin condition that occurs soon after exposure to chemicals and looks like common forms of   acne seen in teenagers.

Diabetes Mellitus Type 2 (Me here: Diabetes is the number one cause of CKD.), A disease characterized by high blood sugar levels resulting from the body’s inability to respond properly to the hormone insulin

Hodgkin’s Disease, A malignant lymphoma (cancer) characterized by progressive enlargement of the lymph nodes, liver, and spleen, and by progressive anemia

Ischemic Heart Disease, A disease characterized by a reduced supply of blood to the heart,  that leads to chest pain

Multiple Myeloma, A cancer of plasma cells, a type of white blood cell in bone marrow

Non-Hodgkin’s Lymphoma, A group of cancers that affect the lymph glands and other lymphatic tissue

tremorParkinson’s Disease (My bolding), A progressive disorder of the nervous system that affects muscle movement

Peripheral Neuropathy, Early-Onset, A nervous system condition that causes numbness, tingling, and motor weakness.

Porphyria Cutanea Tarda, A disorder characterized by liver dysfunction and by thinning and blistering of the skin in sun-exposed areas.

Prostate Cancer, Cancer of the prostate; one of the most common cancers among men

Respiratory Cancers (includes lung cancer), Cancers of the lung, larynx, trachea, and bronchus

Soft Tissue Sarcomas (other than osteosarcoma, chondrosarcoma, Kaposi’s sarcoma, or mesothelioma), A group of different types of cancers in body tissues such as muscle, fat, blood and lymph vessels, and connective tissuespd

My heart sank. But what of the Parkinson’s patient who also has Chronic Kidney Disease. How will the CKD be affected by the PD? We already know we, as CKD patients, can develop muscle weakness and tiredness due to our poorly filtered blood (We know you’re trying, damaged kidneys.). Parkinson’s does the same. I couldn’t even image being the victim of doubly weak muscles.

I found a number of scholarly studies on the effects of PD on those with CKD, but each site was of the purchase-the-study-if-you-want-to-read-it type. That was a bit too costly for me. I still needed more information though.

I discovered that renal disease does contribute to “excessive daytime sleepiness in PD patients” (http://www.ncbi.nlm.nih.gov/pubmed/21435111), although I was actually looking for PD effects on CKD. We’re already tired. Does this mean we’ll be even more tired should we develop PD?

banner-nihlogoReady to be shocked? Here we go: “ESRD is significantly associated with an increased risk of Parkinson’s disease. Close surveillance for Parkinson’s disease should be considered for patients with ESRD.” Oh great. As if we didn’t have enough to worry about. By the way, ESRD is end stage renal disease. Once again, the National Institutes of Health gave us this information. Take a look at the study’s abstract at http://www.ncbi.nlm.nih.gov/pubmed/24751820.

While not exactly on topic, I found this disturbing similarity between the two diseases:

“Frustratingly, for kidney failure patients, the routine laboratory tests are almost never abnormal, and only hint abnormality when the failure process has already begun.  In Parkinson’s disease, as in kidney failure, a ‘threshold’ of cells must be lost before one manifests symptoms.”

There’s more, much more, from The Center for Movement Disorder and Neurorestoration at http://movementdisorders.ufhealth.org/for-patients/movement-disorder-information/parkinsons-disease-information/

Now I’m beginning to wonder if the drugs for Parkinson’s exit the body through the kidneys, but I think that’s a topic for another blog. I also realize that having CKD may affect PD more than PD may affect CKD. Sometimes, I surprise myself with what I learn.SlowItDownCKD 2015 Book Cover (76x113)

On the other hand, I have some good news. Yay! SlowItDownCKD 2015 is now available in print form and the digital form has been updated somewhat. Click on the title to go right to Amazon. One of my readers tells me I get more editing done when I’m sick (Yep, I have the flu.) than at any other time. I believe she has a point there.What is it

Part 2

DIGITAL_BOOK_THUMBNAIL

 

Until next week,

Keep living your life!

Sex Sells… Well, It Keeps Us Interested Anyway

National Kidney MonthHappy Monday, blog writing day, my favorite day of the week.  You know, this is the third week of National Kidney Month which brings quite a bit of kidney disease awareness activity with it. For example, this past Friday and Saturday, The National Kidney Foundation of Arizona held its 17th annual conference in partnership with The CadioRenal Society of America.

I attended on Friday, renal day, since Saturday – cardio day – was a bit too over my head. I had the good luck to run right into Dr. James Ivie, Director of Patient Services, as soon as I entered the building. After I apologized for not having a book for him this year (SlowItDowCKD 2015 is available in digital, but the print version won’t be ready until later on this month.), he told me how very successful the conference was this year, easily surpassing the number of attendees from the year before.

He was so right. I could see for myself that the place was crowded and people were talking. More than one vendor was more interested in my CKD writing than in selling me their product. I was surprised, but delighted. Then I started attending the sessions and found the same with other attendees and, again, was delighted.Kidney Arizona

But what delighted me most was how much I understood.  You see, the more I understood, the more I could bring back to you. As usual, presenter styles varied from the one who simply read the statistics on her slideshow graphs for us to the one who told anecdotes, asked for audience participation, and had us both laughing and highly interested.

Her topic?  Enhancing Intimacy and Sexuality. Her name? Robin Siegel. She is a licensed clinical social worker. Learn.org at http://learn.org/articles/What_Does_LCSW_Stand_For.html tells us “An LCSW, or licensed clinical social worker, is a professional who provides counseling and psychosocial services to clients in clinical settings.”

Ms. Siegel was actually presenting about how nephrology staff can be helpful in these areas, but quite a bit of her information was also useful for Chronic Kidney Disease patients themselves… or those that write about CKD.

Hmmm, her ideas sounded familiar to me. Sure enough, it seems I had been thinking along the same lines when I wrote the following in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

Book Cover“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…..

The 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. …

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. Any chronic disease can make a man or a woman feel less sexual.”

Ms. Siegel added to this by talking about possible medical intervention traumas, cultural values, and gender issues. What Is It and How Did I Get It? Early Stage Chronic Kidney Disease was written in 2010, although it was published in 2011. Transgender was hardly, if ever, mentioned in the news – medical or otherwise. It was almost the same for homosexuality. It’s a different world in 2016. We talk openly about sexuality. Well, let’s say many of us do. I really liked the way this presenter made it clear that these are simply part of some patients’ lives and must be treated respectfully, especially when dealing specifically with their sexuality.IMG_2867

We agreed about intimacy, too. More from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“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….  The best advice I received in this area was make love even if you don’t want to.  Magic.”

Those last thoughts are purely mine, but Ms. Siegel did talk about the snuggling and hugging from a patient point of view: allowing, giving, getting.

Something else she introduced was the different cultural values in our present day society. That’s another thing that wasn’t as publicly prevalent as it is today. For example, certain cultures will not permit a male doctor if the patient is female. If you belong to one of these cultures, you can simply ask for a female nephrologist in the practice or for a referral to another practice with female nephrologists if yours doesn’t have any. (What???  In this day and age!!!!) According to one of my Muslim friends, there is a list of female doctors, including specialists, available in her community.

Other cultures will not allow eye contact. This is important for you to let your nephrologist know about so that he or she will not think you are avoiding topics if this is part of your culture. Sometimes written material such as handouts and pamphlets can allow you access to the same information you would have been told, too.

It seemed to me that Robin Siegel was making clear that there is no problem that can’t be attended to by your nephrologist or his/her staff – even sex and intimacy – with just a bit of adapting to whatever the patient’s (Oh, that means you and me.) sexuality and culture.

IMG_1398

I have been receiving all kinds of laudatory comments about The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 since SlowItDownCKD 2015 was published in digital last week. I like how that works: publish a new book and there’s renewed interest in your others. Feel free to write reviews on any and all of my four CKD books.

Until next week,

Keep living your life!

We Are Not Alone, Unfortunately

I have a friend who keeps telling me that Chronic Kidney Disease is not as widespread as I think it is and that I should stop scaring people by telling them it is. My usual way is to present facts, but not argue. In this case, I found myself arguing which made me wonder if I could be wrong.  Why protest so vehemently if I were sure I was right?

And that’s what today’s blog is about. First, you should know this has nothing to do with whether my friend is right, or if I am. It’s bigger than that… a lot bigger.

How big? Well, let’s start with the United States of America.  This diagram is from The National Institute of Diabetes and Digestive and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-statistics/Pages/kidney-disease-statistics-united-states.aspx.

ckd

I don’t want to scare you too, but 2008 was seven years ago.  How much more has the incidence of new CKD cases risen since then?  Notice it’s the over 65 population with the dramatic rise in new cases. That’s my age group.  Maybe it’s yours, too.

[Reminder from the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: Medicare is the U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.]

This next bit of information is from the American Kidney Fund at http://www.kidneyfund.org/about-us/assets/pdfs/akf-kidneydiseasestatistics-2012.pdf and shows us the numbers for 2012.  That’s getting closer to today, but it’s still three years ago.

Kidney disease is the 8th leading cause of death in the United States.

An estimated 31 million people in the United States (10% of the population) have chronic kidney disease (CKD).

9 out of 10 people who have stage 3 CKD (moderately decreased kidney function) do not know it.kidney interior

CKD is more common among women, but men with CKD are 50 more likely than women to progress to kidney failure (also called end-stage renal disease or ESRD)

Some racial and ethnic groups are at greater risk for kidney failure. Relative to whites, the risk for African Americans is 3.8 times higher, Native Americans is 2 times higher, Asians is 1.3 times higher, and Hispanics also have increased risk, relative to non-Hispanics.

I was diagnosed at stage 3, age 60, and had never heard of CKD before. This chart from the National Kidney Fund at www.kidney.org demonstrates the stages. The numbers outside the half circle represent the percentage of kidney function at each stage.

stages of CKD

That means I was one of the 9 out of 10 people who had stage 3 CKD and didn’t know it, even though I was a woman over 50 (actually, well over 50). Talk about being blind-sided!

What is itTime for another reminder – from my first book again: CKD is damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

Imagine being told you had an incurable disease.  What would your first thought be?  Mine was bizarre. I told the nephrologist that my daughter was getting married.  What I didn’t tell him because I was so shocked at this diagnose is that I thought it meant I was going to die very soon, but I couldn’t allow that because I wanted to be at her wedding.

By the way, that’s where my CKD Awareness activism comes from. I didn’t want any of us to think we were under threat of imminent death once we were diagnosed.  I’d rather explain how to get tested (Eighth leading cause of death in the U.S.) and – #SlowItDownCKD – slow down the progression of the decline of your kidney function.

Let’s take a look at over countries.  This is from Kidney Health Australia as of May this year at http://www.kidney.org.au/kidneydisease/fastfactsonckd/tabid/589/default.aspx

HOW MANY PEOPLE HAVE CKD?

  • Approximately 1.7 million Australians (1 in 10) aged 18 years and over have indicators of CKD such as reduced kidney function and/or the presence of albumin in the urine.
  • Less than 10% of the people with CKD are aware they have this condition.
  • This means over 1.5 million Australians are unaware they have indicators of CKD.

Unhealthy%20KidneyWHO IS AT INCREASED RISK OF CKD?

  • 1 in 3 Australians is at an increased risk of developing CKD.
  • Adult Australians are at an increased risk of CKD if they:
    • have diabetes
    • have high blood pressure
    • have established heart problems (heart failure or heart attack) and/or have had a stroke
    • have a family history of kidney disease
    • are obese (Body Mass Index BMI – more than or equal to 30)
    • are a smoker
    • are 60 years or older
    • are of Aboriginal or Torres Strait Islander origin

Notice their statistics are similar to ours, but there are two more are higher risk groups.

IMG_1398

“In 2013, nearly one million people died from chronic kidney disease. While this represents less than 2 percent of all deaths globally, it is a 135 percent increase from the number of chronic kidney disease-related deaths in 1990.

While the global increase in chronic kidney disease-related deaths is driven in part by people living to older ages, there is no scientific consensus on what is making this increasingly prominent among younger adults, with a near doubling of chronic kidney disease-related deaths among people ages 15 to 49 since 1990.”

The quote above is from Humanosphere at http://www.humanosphere.org/science/2015/01/visualizing-the-rise-of-chronic-kidney-disease-worldwide/ and is related to The Global Burden of Disease Study.

So you see, we are not alone.  Nor are we living under a death sentence. We can spread awareness of Chronic Kidney Disease and educate those diagnosed as to how to slow down the progression of the disease.

Kidney ArizonaTalking (I know, I know, writing) about this, The National Kidney Fund of Arizona will be holding a Path to Wellness screening on Saturday, September 19, 2015 at the Indo American Cultural Center. This includes free blood and urine testing, which is evaluated onsite using point-of-care testing devices to assess for the risk of diabetes, heart and kidney diseases. Those screened are also presented with chronic disease management education, an overall health assessment (weight, blood pressure, etc.) and a one-on-one consultation with a physician. Enrollment opportunities are offered for a follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills.

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

Until next week,

Keep living your life!

I Saw It!

I am so excited!  I watched my kidneys produce urine in live time.  Location of Kidneys

I know, I know: slow down.  Here’s the back story. Remember I wrote about having a bladder infection for the first time in about five years? During consultation with my primary care physician (PCP) about which antibiotic was safe for me, she pointed out that I had taken Ciprofloxacin before with no ill effects and that it was kidney safe. This is a  medication used to kill the bacteria causing an infection.

Okay, I felt comfortable taking it again without speaking to my nephrologist.  However, the 250 mg. twice a day I ingested for five days didn’t do the trick. I waited one day after finishing the prescription and then tested my urine with the same test strips I wrote about in May 25th’s post…and got the same positive results for leukocytes: elevated, which meant infection.

bladderBack to my PCP for more testing. After an in office urine test also showed leukocytes, Dr. Zhao ordered the urine sample be sent to the lab to be cultured, and both a renal and a bladder ultrasound for me. Both the ultrasounds came back normal. She is a very thorough doctor, especially when it comes to my Chronic Kidney Disease or anything that might affect it.  It is possible for infection to move up to the kidneys from the bladder. Luckily, that didn’t happen in my case. Here are the urine culture results from the lab which arrived well into my second regiment of Cipro:

Culture shows less than 10,000 colony forming units of bacteria per milliliter of urine. This colony count is not generally considered to be clinically significant.

Okay, so here I was taking 500 mg. twice a day for my second regiment of antibiotics.  This time I had checked with my nephrologist because of the doubled dosage and taking the second regiment so soon after the first. He gave his approval.

Cipro, like most other drugs, may have side effects.  I hadn’t realized why I was so restless and anxious.  Those are two of the not-so-often-encountered side effects, but I have nothing else to pin these strange (for me) feelings on. My uncustomarily anxiety was causing dissention in the family and interfering with my enjoyment of the life I usually love. After digging deep into possible side effects, I see why.  The funny thing is that all I had to do was read about these possible, but not likely, side effects to feel less anxious and restless.  I had a reason for these feelings; they sad facewould soon dissipate. I could live with that time limited discomfort.

Before taking the ultrasounds, I needed to drink 40 oz. of water – yep, almost two thirds of my daily allowance – and hold it in my bladder for an hour. I started joking with Wendy, the ultrasound technician, as soon as I got into the room.  You know, the usual: Hurry up before I float away, I can’t cross my knees any tighter, that sort of thing.

She was a lovely person who responded with kindness. When she realized I was super interested in what was on the screen, she started explaining what I was seeing to me and turned the screen so I could see what she was seeing. The bladder ultrasound was interesting… and colorful.

But the kidney ultrasound was magic!  I watched as my kidneys produced urine and the urine traveled down to the bladder.  This was real.  This was happening inside my body. And I was watching it in real time.

What is itIn What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I discuss one of the jobs of the kidneys:

They filter as many as 200 quarts of blood per day to rid us of roughly two quarts of waste and extra water.

I was watching the extra water move from my kidneys to my bladder!  I was probably watching the blood being filtered in the kidneys, too, but that was not as clear to me.

Well, what do you know?  It seems the National Kidney Foundation is running a campaign to make the public aware of that, too.  This is what the foundation has to say about the campaign.

The National Kidney Foundation (NKF) has launched a cheeky campaign to promote kidney health and motivate people to get their urine screened.

EverybodyPees is an irreverent, educational animated music video plus a website (www.everybodypees.org) that focuses on the places people pee. EverybodyPees_PostersV3_Page_5The number one goal of the campaign is to link one of the kidneys’ primary functions — the production of urine — to overall kidney health. Pee is important because urine testing can reveal the earliest signs of kidney damage.

“Our research has shown that half of Americans don’t understand that healthy kidneys are responsible for creating urine,” said Kevin Longino, interim CEO of the National Kidney Foundation. “Urine also happens to hold the key to catching kidney disease, especially among the 73 million Americans who are at risk. The message may be unconventional, but it is educational and actionable – get your urine checked for kidney health.”

Kidney disease is at an alarming proportion in the United States. Over 26 million American adults have kidney disease and most don’t know it.  More than 40% of people who go into kidney failure each year fail to see a nephrologist before starting dialysis — a key indicator that kidney disease isn’t being identified in its earliest stages.Healthy%20Kidney

“People aren’t getting the message that they can easily identify kidney disease through inexpensive, simple tests,” said Jeffrey Berns, MD, President of the National Kidney Foundation. “Keeping kidneys top-of-mind in the restroom will hopefully remind people that they should be asking about their kidneys when they visit their healthcare professional, especially if they have diabetes, high blood pressure, a family history of kidney failure, or are over age 60.”

NKF-logo_Hori_OBEverybodyPees is NKF’s first attempt to tackle a serious national health problem from a relatable, consumer angle. The campaign was produced in collaboration with Publicis LifeBrands Medicus.

“We are flipping public health education messaging on its head –using humor to get our message across and foregoing scare tactic messaging” Longino said. “We’re going out on a limb with our core message on urine testing, but we need to take risks if we’re going to alter the course of kidney disease in this country.”

Being who I am, I prefer ‘urine’ to ‘pee,’ but that wouldn’t be half as catchy, would it?

Consider The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 as bathroom reading while you’re urinating – uh, peeing – so we can get some more reviews. And always, let us know about any new CKD books you discover.

Until next week,Part 2Digital Cover Part 1

Keep living your life!

 

Weight A Minute

4weddingWe’ve been married for one week and one day (and no, I don’t feel any different.  Being married to Bear is just as delicious as co-habitating with him).  We just got our pictures back from our future son-in-law and videographer, Sean Rasbury.  They’re beautiful.  We’re beautiful.   Our family is beautiful. Our friends are beautiful. The wedding was beautiful.

But, you know it’s important to keep your weight down when you have Chronic Kidney Disease and the pictures were a rude awakening for me.  I thought I was doing just that.  Hah! I was not the beautiful blushing bride, but the beautiful bountiful bride.

Keeping your weight down is one of the ways to help retard the progression of the disease.  How? By not allowing yourself to become obese. Obiously, if you keep gaining weight, you can become obese.  Obesity is one of the contributing factors for developing diabetes.  Diabetes may lead to, and complicates the treatment of, ckd.

Look at my wedding picture again. Based on my BMI (Body Mass Index) I am obese. This is from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease:

“The BMI formula was something about your weight divided by the sum of your height in inches squared times 703.  I think. I have researched and researched this,

but still do not understand it.  I did discover later on that there are free BMI Calculators online, such as the one on the United States Department of Health and

Human Services’ website [http://www.nhlbisupport.com/bmi/bminojs.htm], so you really only need to know our height and weight. If I’d known that at the time,

I just might not have felt so overwhelmed.”

You can order the book in either print or digital at: http://www.amazon.com/s/ref=nb_sb_noss?url=search-alias%3Daps&field-keywords=What+Is+It+And+How+Did+I+Get+It%3F+Early+Stage+Chronic+Kidney+Disease (which is Amazon) or http://www.barnesandnoble.com/s/What-Is-It-And-How-Did-I-Get-It–Early-Stage-Chronic-Kidney-Disease?keyword=What+Is+It+And+How+Did+I+Get+It%3F+Early+Stage+Chronic+Kidney+Disease&store=allproducts (which is Barnes and Noble).  If you’d like an endorsed print copy, just email me at myckdexperience@gmail.com or call (623) 266-2609.

You can see from the family wedding picture that some of us are naturally thin. They don’t seem to watch their diets or exercise, either. I notice that they need to start doing just that once they approach 30.  I sort of remember that being the case for me, too.  Then again, I danced all the time, studied Judo, ice skated, skied, and basically was moving all the time.  My diet was another story.  I didn’t have ckd at the time and, like any other 20 something, thought that I was immortal.  family

Here’s a chart from Health Travel Guides that offers the other benefits of losing body fat.  You can see it’s an overall positive action to take for your body’s health.

whenyoulosefat

Medical News Today published this information in an article:

“A University of Bristol team, with funding from the British Heart Foundation (BHF), has now identified that a target found to be critical in the brain’s regulation of body weight,

is also crucially involved in the development of obesity-associated conditions. Researchers describe the mechanism behind a key molecule, known as melanocortin-4-receptor (MC4R),

whose mutation or loss in both human and animal models has shown to cause severe obesity with type 2 diabetes.”

The title of the article is Scientists Identify Culprit In Obesity-Associated High Blood Pressure. Hmmm, high blood pressure (hypertension), another contributor to ckd. This is preliminary research so we can’t just pop a pill that will magically control our weight.  We need to do that ourselves. You can read the article for yourself at: http://www.medicalnewstoday.com/releases/255768.php.

If you read another article at: http://news.health.com/2013/02/06/vitamin-d-loss-attributed-to-obesity/, you’ll find that obesity also may lead to a drop in vitamin D, something we can’t afford as ckd patients.  This is the vitamin that regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks.  It also affects the immune system. If you’re like me at stage 3A, you’re already taking vitamin D supplements since we need to control phosphorous levels, which means we cannot afford to lose any more of it.

Yet another caution about obesity from Medical News Today is not only for ckd patients but any woman of child bearing age.  The headline says it all: Obese Women Taking Certain Contraceptive May Be At Increased Risk For Type 2 Diabetes.  Keep in mind that diabetes, as mentioned before, may contribute to the development of ckd.  Want to read the entire article?  Here’s the link: http://www.medicalnewstoday.com/releases/256099.php

thAccording to DaVita at http://www.davita.com/kidney-diet-tips/?p=1872

  1.                                        “… people with a BMI 35 or greater had higher death rates than normal weight, overweight and mildly obese patients, so becoming more obese is a concern.
  •                                         Obese people are more likely to have chronic diseases like diabeteshigh blood pressure and heart disease, which could mean they receive more medical care
  •                                                                                                                                                                                                                                       and monitoring compared to normal weight people.
  •                                         Excess weight may be a source of energy during illness or injury—a benefit the lean person does not have.
  •                                        A person can have different degrees of  health and fitness regardless of their BMI or weight. Factors such as nutrition status, diseases, health history, where
  •                                                                                                                                                                         fat is stored (abdominal  vs. lower body), eating habits influence your level of fitness.

The message here is that while excess weight may not affect your general health and may even be of some benefit during times of ill health, we have a chronic disease and cannot afford the luxury of the benefits in being overweight.

We offered no goodies except the wedding cake at our shindig.  Our dinner was all pasta based with plenty of salad and an additional side of string beans.  We had enough champagne for a toast.  That’s it.  We were able to provide the usual wedding dinner with options for those with ckd (ME!). The only thing we each had to control is how much of each we ate.taste the cake

We spent time enjoying instead of gorging.  All our daughters took part in the ceremony:  Abby Wegerski sang Marry Me and Nima Rosensfit sang I Would Love To Be Your Last, Lara Garwood was in charge of the candles for the family blending part of the ceremony, and Kelly Garwood read ‘Corinthians.’  Bear and I wrote our own vows and tailored the officiant’s vows to our beliefs.

Our audience consisted of only Janet Le, my long time buddy from Staten Island; Karla Lodge, my Arizona buddy; and Alex Gilman, Lara’s beau, because I wanted to become Bear’s bride under the palo verde tree in our backyard with only our dearest and nearest in attendance – that, of course, includes Sean Rasbury, who is Kelly’s fiancé, and Michael Payne who was Bear’s best man.  Even Bella, our dog, showed up for the ceremony wearing her new red collar with the red hibiscus the Kurrs and Doris Widmayer had brought back from Hawaii for me.

More pictures next blog and further descriptions for what we did for fun, instead of gorging, at the reception.

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!

I Showed You Mine, Now Show Me Yours

Bear and I are going to be married on April 6th. It will be a simple ceremony in our back yard under the magnificent palo verde tree (which I hope recovers from the recent freeze to be magnificent again very, very soon). We each have two daughters and one has a fiancé.  Add Bear’s best friend and you have our wedding party. Reverend Doctor Mitzi Lynton of Creative Living Fellowship will be officiating.  Simple, sweet, and to the point.

I don’t see how that will change anything for us since we’ve been together – and loving it – for years.  Well, there will be a thin white gold band under my engagement ring. Oh, and I’ll add Garwood as a hyphenate to Gail Rae. Wait, Bear will wear a wedding band, as yet unchosen, too.  But that’s it.  Or is it?

I’m starting to wonder what my chronic kidney disease – newly diagnosed as stage 3A or the beginning part of stage 3 – means to our life together. Bear is already wonderful about sharing meals with me when we go out and being sure to order only what I can eat.  He even picks up my exercise habit every so often and accepts that I get tired for no reason (hah!) sometimes. But I suspect there’s more.

According to The Journal of the American Society of Nephrology (JASN), a new study reveals your lifetime risk of developing kidney failure:

Approximately 1 in 40 men and 1 in 60 women of middle age will develop kidney failure if they live into their 90s.

People with reduced kidney function face an even higher risk.

Kidney failure is on the rise and currently afflicts 2 million people worldwide.

You can read the EurekAlert! notice about this article for yourself at: http://www.eurekalert.org/pub_releases/2012-08/ason-wyl081012.php

I’m a person with reduced kidney function.  So I face a higher than 1 in 60 women risk for kidney failure.  Not on your life!!!  Or maybe I should say my life.

I’m perfectly capable of keeping that heightened risk at bay and I intend to.  I have so much to look forward to. Obviously, we won’t be starting a family(That would be one for Ripley’s Believe It Or Not).  But there are daughters, lots of daughters, and they may choose to someday. 

Abby is starting her new job today.  I wouldn’t have missed that for the world.  How many better and better positions is she going to find in her career?  Kelly and Sean will have their own wedding next year and I’ll be there.  I want to see more of Nima… New York isn’t that far away. And Lara, how will she choose to have her life develop?

So, you ask, “How will you do that, Gail?”  I’ll educate myself about chronic kidney disease even more, that’s how. 

These are the groups I follow on twitter that have information to help me (and you):

Am Soc Nephrology‏@ASNKidney  –  ASN: Leading the Fight Against Kidney Disease.

American Kidney Fund‏@KidneyFund  –  The American Kidney Fund fights kidney disease through direct financial support to patients in need, health education and prevention efforts.

DaVita@DaVita  –  Giving life to dialysis patients. Creating #kidneyaware communities. Cultivating leadership with #DaVitaU. Living our core value of fun.

Joel Topf‏@kidney_boy  – Salt whisperer, nephrologist, runner, blogger and editor of @kidometer. Interests: teaching, medicine, electrolytes, CKD, and all things Apple#FOAMed advocate

Kidney Foundation‏@ChattanoogaKF  –  To provide help and information to those affected by kidney disease.

Kidney Foundation@kidneycanada  –  The Kidney Foundation of Canada is the national volunteer organization committed to reducing the burden of kidney disease.

Kidney Research UK‏@Kidney_Research  –  Right now, over 3 million lives in the UK are affected by chronic kidney disease. Please support Kidney Research UK.

KidneyDiet®‏@KidneyDietApp  –  An App to help you watch the 3Ps. Phosphorus. Potassium. Protein. CKD, ESRD, dialysis – whatever your situation, now make better diet choices w/ KidneyDiet®.

KidneyMI‏@KidneyMI  –  The mission of the National Kidney Foundation of Michigan is to prevent kidney disease and improve the quality of life for those living with it.

Libre, LLC‏@LibreClothing  –  A clothing company for chemotherapy, dialysis, & other infusion patients; making everyone’s day a little more Libre!

Mostly Medical Links‏@MostlyMedLinks  –  Interesting medical news and links via @JoshuaSchwimmer, a nephrologist.

NKF of Hawaii‏@KidneyHI  –  National Kidney Foundation of Hawaii

NKF Upstate NY‏@NKF_UPNY   –  The National Kidney Foundation Serving Upstate and Western New York

NurseGroups  – The social career resource for nurses. Tweeting daily nursing and health news. #TeamNurses

NYTimes Health‏@nytimeshealth  –  Health news from the Science desk of The New York Times

Renal Info‏@renalinfo  –  Baxter is a diversified company that develops & manufactures products that save and sustain the lives of people with kidney disease and other medical conditions

RenalFellowNetwork‏@RenalFellowNtwk  –  A website written for renal fellows, by renal fellows.

RenalSupportNetwork‏@RSNhope  –  Renal Support Network is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease.

RNCentral.com‏ @RNCentral  –  Nursing education, news, and healthy living tips

NKF_Advocacy‏@NKF_Advocacy  –  Join the National Kidney Foundation’s advocacy movement for people affected by chronic kidney disease, organ and tissue transplant and donation!

RWJF PublicHealth‏@RWJF_PubHealth  –  RWJF’s public health program area. We want to make staying healthy less costly and improve quality of life for all Americans. http://www.NewPublicHealth.org

The Kidney Group‏@thekidneygroup  –  Consistently voted Top Nephrology Practice in So Florida, we bring you kidney and related health news with commentary by our board certified nephrologists.

World Kidney Day‏@worldkidneyday  –  World Kidney Day’s objective is to raise awareness globally of the importance of Kidney Health and to increase screening for chronic kidney disease

You’re probably thinking, “Oh, so many different National Kidney Foundation addresses,” but each one has different, interesting, and (most importantly) helpful information pretty much on a daily basis.  Did I miss any?  Which do you follow that I haven’t listed here?

I’m making this journey and I’m going to enjoy it.  More information about ways to prolong it will certainly help.  I showed you mine.  Now show me yours.

Until next week,

Keep living your life!

Read, Read, Read

I’m a voracious reader.  I read everything: instructions, food labels, medicine bottles, research, fiction, non-fiction and my doctors’ notes.  In What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wrote about keeping a file for yourself for each doctor you see. 

                                    

                                     I began requesting copies of my doctor visit reports as well as my blood and urine tests so I could have my own file

                                     at home and stay on top of whatever I needed to. With these copies, my home files would be much more thorough.

                                     I was feeling burned by my previous P.A.’s failure to pick up on the low readings for the estimated GFR and felt I

 

                                     had to be my own case manager. I still do and find both the nephrologist and my primary  care

                                     physician  agree with me.

                                  

                                   Not a single doctor that I’ve seen for a test or a consultation has ever refused or been difficult about

                                   making certain I receive these copies. Most  (The one exception was a rheumotogist I encountered after

                                  the book was published who not only charged for these copies, but had me doing the telephone run

                                  around just to request them.) have encouraged me to keep my own, thorough medical files at home.  I

                                  suspect it may have made life easier for these doctors, too, since there was no calling other doctors to fax

                                  reports or requesting them from labs.  I had them and could fax them over to whichever doctor needed to

                                 see them immediately.

 

 I have been adding quite a bit to these files recently due to the cataract surgery, sleep apnea apparatus, allergies, biopsies, cryosurgery, and an asthma scare.  I have been a bit of a medical mess lately.  

Ever notice that things happen in threes? I’m beginning to think they may happen in sixes. At any rate, I began to doubt my own advice until I read the following articles. 

Opening MDs’ Notes to Patients Wins Support

By David Pittman, Washington Correspondent

Published: October 13, 2012

WASHINGTON — Patients who viewed their doctors’ notes reported feeling more in control of their care and practiced better medication adherence, a study showed.

You can read the rest of this one at:

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

I have to agree that I do feel more in control when I read the doctors’ notes. I’m also something of an overachiever, so I want to see my success at whatever was instructed – provided I understand it and agree with it – reflected in my doctors’ notes.

As for my doctors writing more clear and easily understood notes once they realized I would be reading them, well…. maybe it’s because they know I’m going to research that mine don’t do this.

Wait a minute; I used to spend quite a bit of time researching. It seems to me that I spend less and less time researching these days, but am not certain if that’s due to the growth of my knowledge base (Oh no!  I’m using my college instructor vocabulary in a CKD blog.  Talk about needing to write more plainly!) or if doctors really are writing in a way their patients can understand.

The other article that caught my eye was this one:

Medication beliefs strongly affect individuals’ management of chronic diseases, MU expert says

Health practitioners should use behavior-change tactics so patients take medications as prescribed

COLUMBIA, Mo. – Nearly half of patients taking medications for chronic conditions do not strictly follow their prescribed medication regimens. Failure to use medications as directed increases patients’ risk for side effects, hospitalizations, reduced quality of life and shortened lifespans. Now, a University of Missouri gerontological nursing expert says patients’ poor adherence to prescribed medication regimens is connected to their beliefs about the necessity of prescriptions and concerns about long-term effects and dependency.

The entire article is at: http://www.eurekalert.org/pub_releases/2012-10/uom-mbs101512.php

I readily accept that your beliefs dictate your behavior.  For example, my PCP was worried that I might be developing asthma and prescribed a steroid inhaler plus a daily allergy pill until I could see my immunologist.

She was being cautious, but the QVAR could cause oral thrush – a fungal condition – if I didn’t rinse my mouth and teeth carefully enough.  That was scary.  A medication that could cause another condition?

Hmmmm, it did allow me to breathe freely, though.  After a couple of weeks, I became even more uncomfortable since I believed I was developing a dependence on the QVAR. For once in my life, I didn’t research that.  I just stopped taking it.

When I did get to see my immunologist, I suggested stress might be causing the ferocious cough and the difficulty catching my breath afterward.  Not only did I have all these annoying medical problems I mentioned above, but my good buddy and my cousin died in the same week.  It was a rough patch in my life unlike any I’d experienced in the last twenty years.

My immunologist listened to me and suggested breathing exercises that might help since I wasn’t interested in any more pills or other medication.  At my request, she wrote the instructions for yoga breathing in her notes. And, of course, gave me a copy.

As for the article’s mention of mechanical reminders to take your medication, I still wouldn’t take medication if I didn’t agree with the purpose for taking it.  I do think I should have been more responsible and spoken to Dr. Zhao before I just stopped, but who says I was thinking clearly.

Bear uses the reminder on his phone whenever he needs to take a new medication (or cooks or times finish on his woodwork. He’s very clever that way.)  It works for him and he’s found some pretty interesting ring tones. If that method of reminder works for you, use it.  My meds are always meal based, so that triggers me to take the meds.

Here’s a laugh, sometimes I’m just not hungry but I know I have to have something in my stomach before I take my meds so I eat.  Can I blame all this excess weight on that?  Please?????

Until next week,

Keep living your life!

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!

NEWS FLASH!

Happy July 4th, folks!

The news flash is on Kidneysteps.com.  Take a look at that first article.  Yep, that’s me.

Enjoy that quick read and I’ll see you Monday, as usual but from Portland, Oregon!

Until Monday,

Keep living your life!!!!