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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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!

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!

And Then There Are Bhutan and India

There’s a fellow on Facebook whose name caught my eye. A little background first. My older daughter is called.Nima, That’s a Tibetan name which means ‘the sun.’ Since my children’s father was studying Tibetan psychology at the time, we were going to name our second child Tashi. That means ‘good fortune.’

After some heart searching talks, we decided this child would be not only our second, but our last. It is a tradition in my Jewish religion to name a child after honored, deceased members of the family. There were still beloved people to be honored, so Tashi was voted out. Yet, I have always liked the name.

Now that you know why I like the name, you’re probably asking yourself what this has to do with Bhutan. That’s where the follow on Facebook whose name caught my eye lives and – surprise – he is a Chronic Kidney Disease Awareness Advocate. We don’t have regular contact with each other, but I do read the posts on his Facebook Tashi Namgay Kidney page.

Now I’ll bet you want to know just where Bhutan is. As you can see from the map, it’s in Southeast Asia and is surrounded by India except for the northern border which is shared by China.
This small country has an active CKD community. The Bhutan Kidney Foundation was Tashi’s baby. He was persistent about instituting this foundation in Bhutan and finally succeeded in 2012.

This is from their website at http://www.bhutankidneyfoundation.org/

OBJECTIVES:
• To promote overall well-being of kidney patients in Bhutan.
• To raise awareness among general public on kidney related diseases in coordination with relevant agencies and stakeholders.
• To ensure all kidney patients have easy access to affordable care and services.
• To raise funds and facilitate underprivileged and needy patients to undergo transplant even though RGoB currently bears the entire medical costs besides other financial assistance.
• To support establishment of renal and other organ transplantation programmes in Bhutan in near future.
• To encourage, promote and facilitate legal organ donations.
• To provide necessary support and services to other organ-related patients as well.
• To explore international funds amongst health supporting organizations around the globe for the purposes of carrying out research on causes of rampant kidney failures in Bhutan so that in near future, the disease may be contained.

They also have a Facebook page with the same name. As a matter of fact, I mentioned that page just recently in the June 12th blog, although I didn’t realize at that time that Tashi was the prime mover behind the Bhutan Kidney Foundation.

According to World Life Expectancy at http://www.worldlifeexpectancy.com/country-health-profile/bhutan, Bhutan ranks 46th in the world for deaths due to kidney disease. That equates to a little less than 19 deaths per 100,000 people as of 2014. Bhutan’s population was only approximately 765,000 people at that time.With the rise in CKD in Bhutan, Tashi’s work to education the citizens about the disease is much needed.

What about India? Does they also promote CKD Awareness? Indeed, so much so that Subash Singh invited me to post the blog on his Mani Trust Facebook page. Mani Trust deals with all kinds of help for the people living in India, not just CKD. There are food initiatives, clean-ups, any kind of humanitarian undertaking they can think of.

I, of course, am only going to deal with CKD in India. According to MedIndia.net – one of the first health websites in India and one I’ve used before – at http://www.medindia.net/health_statistics/health_facts/kidney-facts.htm,

“There are approximately 7.85 million people suffering from chronic kidney failure in India…. In India 90% patients who suffer from kidney disease are not able to afford the cost of treatment.”

Reminder, it was an Indian doctor who was responsible for this blog’s existence. When What Is It and How Did I Get It? Early Stage Chronic Kidney was published, he contacted me wanting the information for his patients who were so poor they could rarely afford the bus fare to the clinic. The book became the first blog posts.

Now I wish now that I had saved his email and his name. But who knew six years ago that SlowItDownCKD would be winning kidney health blog awards and be the source of six more CKD books?

Back to CKD activity in India. Oh my! India ranks a whopping 24th in the world for kidney related deaths. That was almost 22 people per 100,000 in 2014. At that time, India’s population was 1,271,702,542. For comparison, the population of the U.S. for the same year was 325,120,000.

This is from BioMedCentral at http://bmcnephrol.biomedcentral.com/articles/10.1186/1471-2369-13-10. Due to space constraints, I have not reproduced the entire chart. By the way,  BioMedCentral is the home to BMC Nephrology, which is an open access journal.

The number of cases reported from each zone (me here: of India) in the different years

Year
2006            13,231
2007            11,196
2008            11,644
2009            10,188
2010*            6,388

*Till Sep 30, 2010

Apparently, most of the CKD in India is caused by diabetic nephropathy. I turned to my old favorite WebMD for a definition. This one is at http://www.webmd.com/diabetes/tc/diabetic-nephropathy-topic-overview#1.

Nephropathy means kidney disease or damage. Diabetic nephropathy is damage to your kidneys caused by diabetes. In severe cases it can lead to kidney failure. But not everyone with diabetes has kidney damage.

Healthline, a well-respected health information site, at http://www.healthline.com/health/type-2-diabetes/diabetic-neuropathy#types3 tells us:

Diabetic neuropathy is caused by high blood sugar levels sustained over a long period of time. Other factors can lead to nerve damage, such as:

• damage to the blood vessels, such as damage done by high cholesterol levels
• mechanical injury, such as injuries caused by carpal tunnel syndrome
• lifestyle factors, such as smoking or alcohol use

Low levels of vitamin B-12 can also lead to neuropathy. Metformin (Glucophage), a common medicine used to manage the symptoms of diabetes, can cause lower levels of vitamin B-12.

So much to digest, umm, I mean understand.

It seems to me that while CKD is burgeoning world wide (although as we see in the chart, come countries are lowering the incidence of the disease), but so is CKD awareness… and that gives me hope. I haven’t written about them here, but the European countries each have their own kidney organizations. I remember writing about some of the Caribbean and African countries. If there’s a particular country that interests you which I haven’t covered, leave me a comment.

Until next week,
Keep living your life!

Singapore Knows CKD

I have an online friend, Leong Seng Chen, who lives in Singapore and is highly active in the Chronic Kidney Disease Awareness community there. Last week, I asked if any readers would like to see certain organizations that weren’t already there added to the blogroll – the list of CKD organizations to the right of the blog itself. He mentioned two but one was a Facebook page and the other was for dialysis. I usually write a blog about current Facebook pages once a year and don’t usually write about dialysis.

His request, which I couldn’t honor, got me to thinking about what is going on for CKD patients in Singapore. So, I started poking around.

The Clinical Journal of the American Society of Nephrology (of all places!) looked into this in 2008, a decade ago, and published the following at http://cjasn.asnjournals.org/content/3/2/610.full.

The NKF Singapore Prevention Program presents a unique approach that incorporates a comprehensive multilevel strategy to address chronic kidney disease …. What makes the NKF Singapore program different is that it incorporated a public health approach to preventing ESRD by using primary, secondary, and tertiary prevention initiatives that can intervene at several stages in the progression of kidney disease. These include 1) surveillance of the general population for urinary abnormalities, 2) screening of the general population for clinical conditions that increase the risk of chronic kidney disease, such as diabetes mellitus and hypertension, 3) the institution of a disease management program to facilitate the management of patients with diabetes and hypertension, which are among the leading causes of ESRD in the country, and to a limited extent, 4) tracking of the individuals who participate in the screening program. Thus, both population-based and high-risk prevention strategies were incorporated into the Singapore Prevention Program.

If you think about it for a moment, this is an astoundingly comprehensive approach to awareness, prevention, and treatment.

I was intrigued and looked further. This chart is from Health Exchange/Singapore at https://www.healthxchange.sg/digestive-system/kidney/chronic-kidney-disease-singapore-stats-prevention-tips. As you can see, it includes statistics up to (and including) 2012. That’s still half a decade ago.

I had naively assumed the National Kidney Foundation was an American organization. Here, in the United States, it is. There, in Singapore, it’s a Singaporean organization.

In Singapore, CKD awareness is not just an adult undertaking. There is a bus provided by the NKF that goes to schools, among other places, to educate young children about how to prevent and recognize the disease, as well as what the kidneys do. Somehow, I found that charming and necessary simultaneously. Why don’t we do that in the United States, I wonder. Take a look at https://www.nkfs.org/kidney-health-education-bus/ to see for yourself what I’m talking about here.

The National Registry of Disease Office was founded by the Ministry of Health in 2001. While the most current statistics I could find, they only record Chronic Kidney Failure, or End Stage Chronic Renal Disease (ESRD). According to their website at https://www.nrdo.gov.sg/about-us,

We are responsible for:
● collecting the data and maintaining the registry on reportable health conditions and diseases that have been diagnosed and treated in Singapore
● publishing reports on these health conditions and diseases
● providing information to support national public health policies, healthcare services and programmes

Meanwhile, the statistics from Global Disease Burden Healthgrove are only four years old and give us a better understanding of what’s happening in Singapore as far as CKD. You can choose different filters at http://global-disease-burden.healthgrove.com/l/67148/Chronic-Kidney-Disease-in-Singapore

As they phrase it: These risk factors contributed to, and were thought to be responsible for, an estimated 100% of the total deaths caused by chronic kidney disease in Singapore during 2013.

I hadn’t been aware of just how involved with CKD Singapore is until Leong started telling me. Now, I’m astounded to learn that this country is number four in deaths from our disease.

Just as in the United States, Singapore posts lists of nephrologists, herbal aids, hospital studies, and even medical tourism sites. While I may or may not approve of such listings, they have opened my eyes to the fact that Singapore plays with the big boys when it comes to CKD. Come to think of it, they may even be more developed when it comes to educating the public. Remember those education buses?

Many thanks to Leong Seng Chen, my CKD friend on Facebook this past year and- hopefully – many more years to come.

On another topic entirely, winning a place in Healthline’s Top Six Kidney Disease Blogs two years in a row spurred me on to finally rework both The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 into something more manageable: each book will be divided into two books with their own indexes and renamed SlowItDownCKD and the year. Right now I’m working on SlowItDownCKD 2011. Hey, let’s hold the cheering down there.

In addition, all the Kindle versions of each of the SlowItDownCKD books are now $2.99 in order make them more accessible to more people. I’m working on lowering the price for the print books too, but that seems to be more complicated…or maybe I just don’t understand the process yet. I would stick to Amazon.com since B & N.com simply never responds to my attempts to lower the price on any of my books.

By the way, have you heard about this from AAKP? (You can read more about it on their website.)

AAKP has been in the news and across social media lately as public interest continues to build in KidneyWorks – a groundbreaking national initiative we developed in full collaboration with our partners at the Medical Education Institute (MEI). The multiphase initiative aims to identify and address barriers to continued employment for individuals with chronic kidney disease (CKD). Phase I of KidneyWorks involved a consensus roundtable of national experts on kidney disease and workforce experts who convened in Washington, D.C. and the development and public release of a White Paper detailing strategies to help working-age people with non-dialysis chronic kidney disease (CKD) improve their lives, slow CKD progression, and keep their jobs. Phases II and III will involve the development, production and dissemination of strategies and online and mobile tools that help workers, caregivers and employers help achieve the goals of KidneyWorks.

Until next week,
Keep living your life!

Updated

 

 

 

You may have seen the pictures of the updates we’ve been making to our home on Facebook or Instagram. Now, it seemed to me that if I could update my home, I could update SlowItDownCKD’s social media. So I did. The website at www.gail-raegarwood.com is totally SlowItDownCKD now, as are the Instagram, LinkedIn, Twitter, and Pinterest accounts. Of course, the blog was next. I liked my updates, but realized some of the new organizations on the blogroll (the list to the right of the blog) may be unknown to you.

No problem. I’ll just introduce them to you. Allow me to make the introductions…

We’ll go alphabetically down the roll here. The American Association of Kidney Patients, The American Kidney Fund, and The American Society of Nephrology are not new. Just in case you need a reminder of what each is, I’ve linked their titles to the organization. Just click on one of them to go to their websites, as you usually do for any title on the blogroll.

This brings us to The International Federation of Kidney Foundations. This is directly from the young (established 1999) organization’s website:
The International Federation of Kidney Foundations leads the way in the prevention and treatment of kidney disease, through its Membership on all continents around the world. The Federation was formed to foster international collaboration and the exchange of ideas that will improve the health, well-being and quality of life of individuals with kidney disease. We hope to achieve this by advocating for improved health care delivery as well as adopting and disseminating standards of best practice of treatment and care. We facilitate education programs for member organisations, promote research, communicate with other organisations and exchange ideas, particularly those concerning fund raising….
The IFKF helps facilitate the establishment of more kidney foundations and to help existing foundations become more dynamic and effective. Worldwide, most individuals with chronic kidney disease or hypertension are not diagnosed until long after the illness has developed. Moreover, when they are diagnosed they are too often treated sub-optimally or not at all. In many parts of the world, once end stage kidney failure occurs, patients do not have access to dialysis or kidney transplantation.
IFKF members join together with ISN members and kidney patient associations, to celebrate World Kidney Day annually in March, to influence general physicians, primary healthcare providers, health officials and policymakers and to educate high risk patients and individuals.

I’ve been interested in the global effects of Chronic Kidney Disease since I started preparing for Landmark’s 2017 Conference for Global Transformation at which I presented this past May. Writing two articles for their journal opened my eyes- yet again – to the fact that this is not just a local problem, but a worldwide problem. That’s why I included Kidney Diseases Death Rate By Country, On a World Map in the blogroll. I mapped out the statistics I found here on a trifold map to exhibit at the conference. Seeing the numbers spread all over the world was startling, to say the least.

Here is their 2015 global CKD information:
In 2015, the Asian nations of India and China fared the worst when it came to the number of deaths due to this degenerative health condition per thousand people. According to the World Health Organization (WHO) data (I’m interrupting. Would you like a link to WHO on the blogroll?), India had the highest number of kidney diseases deaths. The data put the figure at an astounding 257.9 per 1,000 people. China had the second highest number of deaths due to kidney diseases. Here, the number stood at 187.4 per 1,000 people. Though not as bad as the two Asian nations, the United States was also grappling with the problem of kidney diseases deaths in 2015. The nation had 59.8 deaths (per 1,000 people) due to kidney diseases, while Indonesia, which occupied the fourth place, had an estimated 43 deaths (per 1,000 people) due to kidney diseases. Nations such as Egypt, Germany, Mexico, Philippines, Brazil, Thailand and Japan reported deaths between 20 and 40 (per 1,000 people) due to kidney-related diseases. But, on the positive side, there were many nations in the world where a negligible number of people died due to kidney diseases. It is a noteworthy fact that countries such as Maldives, Vanuatu, Iceland, Grenada, Comoros, Belize, and many others, reported a zero figure in 2015.

But then I wanted to cover more localized information about CKD, so I included The National Chronic Kidney Disease, Fact Sheet, 2017. This is basically facts with pictograms that make the information about the United States’ CKD information more visual and easier to grasp. The information is more distressing each year the site is updated.

Fast Stats

• 30 million people or 15% of US adults are estimated to have CKD.*

• 48% of those with severely reduced kidney function but not on dialysis are not aware of having CKD.

• Most (96%) people with kidney damage or mildly reduced kidney function are not aware of having CKD.

After several sites that are not new, the last new site, other than direct links to SlowItDownCKD’s kidney books, is The Kidney & Urology Foundation of America. Why did I include that? Take a look at their website. You’ll find this there:
The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.
What Sets Us Apart?
The Kidney & Urology Foundation of America is comprised of a dedicated Executive Board, medical advisors, educated staff and volunteers who provide individualized support to patients and their families. Adult nephrologists and transplant physicians comprise our Medical Advisory Board, Board – certified urologists serve on the Urology Board, and pediatric nephrologists and urologists represent the Council on Pediatric Nephrology and Urology.
We are a phone call or e-mail click away from getting you the help you need to cope with a new diagnosis, a resource for valuable information on kidney or urologic diseases, a window into current research treatment options or a link to a physician should you need one.

Are there any organizations I’ve left out that you feel should be included? Just add a comment and I’ll be glad to take a look at them. I am convinced that the only way we’re going to get any kind of handle on Chronic Kidney Disease as patients is by keeping each other updated.

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!

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!

 

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!

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!

Starting My Day

Every day, I spend the morning doing ‘kidney work’ as I call it. That means looking for Chronic Kidney Disease related articles on Facebook, Twitter, LinkedIn, Instagram, Pinterest, and perusing the various medical newsletters to which I’ve subscribed. This takes a minimum of two hours. I also post something on most of these sites at as SlowItDownCKD.newckdfbcover

I noticed I’d been reading more and more about the plant based diet being good for CKD patients, so that’s what I posted on SlowItDownCKD’s Facebook page at https://www.facebook.com/SlowItDownCKD/on November 1. Then I started receiving emails from readers about it.

One was a very interesting, but undocumented, chart concerning how avoiding red meat lowers the risk of CKD. There was no title … and to make it worse, the reader – Cindy – couldn’t remember where she found it. She was frustrated; I was frustrated. So I did a little digging.

I started with a site that’s fast becoming one of my favorites – NephJC, a journal club. According to their website,

“It is the teaching session where trainees and teachers exchange roles. Journal Club is the area where the flipped classroom has been fully implemented in medical education. Read and study the article at home, and then use classroom time to critically debate the methods, results and interpretation of the article.”GFR

As both a former high school and college instructor, I can tell you this method of teaching seemed to have sparked some super creative thoughts in my classroom. Anyhoo, as they say, that’s where I found the chart. More specifically, it’s at http://www.nephjc.com/news/2016/8/17/red-meat-summary. Read the article. It’s got more information.

red-meat-chart

Cindy also mentioned that she lost so much weight – without being hungry – on the plant based diet that her nephrologist asked her to gain weight so that she wouldn’t “be at the bottom of BMI or below.” You know this grabbed my attention.

At the same time we were corresponding, another CKD Awareness Advocate posted in a private FB group (Hence, the reason he remains unnamed.) that in his last two nephrology labs, he raised his GFR something like eight or nine points and had nothing to attribute it to but changing to a plant based diet.FullSizeRender (2)

As a reminder, here’s the definition of GFR from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“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.”

Let’s look at this a little more closely. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I wrote a blog about the limited history of nephrology and included mention of the five stages of CKD. Basically, the higher your GFR, the better your kidneys are working. FullSizeRender (3)So this means the other advocate’s kidneys are functioning better now that he’s on a plant based diet. Why?

I turned to Dr. Greger’s NutritionFacts.org on YouTube for a better explanation than any I could offer. Dr. Greger is Michael Greger, described on NutritionFacts.org as:

“a physician, New York Times bestselling author, and internationally recognized speaker on nutrition, food safety, and public health issues. A founding member and Fellow of the American College of Lifestyle Medicine, Dr. Greger is licensed as a general practitioner specializing in clinical nutrition. He is a graduate of the Cornell University School of Agriculture and Tufts University School of Medicine.”

NutritionFacts.org, while new to me, describes itself on its site as:

“a strictly non-commercial, science-based public service provided by Dr. Michael Greger, providing free updates on the latest in nutrition research via bite-sized videos. There are more than a thousand videos on nearly every aspect of healthy eating, with new videos and articles uploaded every day.”IMG_2982IMG_2980

I thoroughly enjoyed his analogy of overloading the kidneys with meat protein to that of constantly revving a car’s engine, especially since that’s the same analogy I used in my first CKD book.  He also mentions inflammation as a contributing cause of lower GFR. I’m glad I’ve discovered his website and intend to take a closer look at it…just not now.

Now I’m really interested in going back to Cindy’s comment about losing weight on the plant based diet. I wanted to know – what else? – why. I spent most of yesterday researching. The consensus seems to be that not having to count calories or portion control may have something to do with it.  Then again, maybe it’s the lack of cookies, cakes, and candies. The few medical studies I did find were far too complicated for me to understand, much less explain. Are there any readers out there who can help? I have one particular reader in mind and hope that she will immediately respond.

Let’s see if I can do any better with finding out why the nephrologist of the reader I’m corresponding with doesn’t want her to “be at the bottom of BMI or below.” Aha! A study by US National Library of Medicine, part of the National Institutes of Health at https://www.ncbi.nlm.nih.gov/pubmed/26920126 suggests that “that combined effects of low BMI … and serum albumin level … are associated with CKD progression.”

NIHMaybe we should take a look at “serum albumin level.” Serum means it’s the clear part of your blood, the part without red or white blood cells. This much is fairly common knowledge. Albumin is not. Medlineplus, part of The National Institutes of Health’s U.S. National Library of Medicine at https://medlineplus.gov/ency/article/003480.htm tells us, “Albumin is a protein made by the liver. A serum albumin test measures the amount of this protein in the clear liquid portion of the blood.” Uh-oh, this is also not good: a high level of serum albumin indicates progression of your kidney disease. Conversely, kidney disease can cause a high level of serum albumin.

Even with yesterday’s research, this blog has taken quite a while to complete … and not just because I was doing the wash while I wrote it, or because I was enjoying having the window to my right open as I wrote. I can see this becoming several additional blogs… if there’s reader interest.

Until next week,

Keep living your life!

Then Why Wait?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep living your life!

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!

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!

Apple Cider Vinegar?

I woke up thinking, ‘apple cider vinegar.” Granted, that’s an odd thought for the first thing in the morning… or is it? Last week, I blogged about the Apple-Cider-Vinegarbenefits of drinking lemon juice in a glass of water first thing in the morning. Okay, you’ve read the blog; you know that.

What you may not know is that the blog is posted on a multitude of Facebook chronic illness sites. A reader on one of these sites commented on the blog. I don’t remember exactly what she said, but it had something to do with her taking apple cider vinegar every day to help keep her body in alkaline balance.

Ah, now that first thought of the day today is starting to make sense. Monday is blog day for me. It looks like my mind was providing me with a topic for today’s blog.SlowItDownCKD 2015 Book Cover (76x113)

I’ll bet the first question you have is why she would want to help keep her body in alkaline balance. Let’s do a little back tracking to answer that question. As per last week’s blog, Dr. Jonny Bowden, a nutritionist and health author, tells us, “Having a healthy alkaline balance helps fight germs.” No contest, I’m sure we all want to do that.

I know, I know, now you’d like to know why alkaline balance – as opposed to acidic body chemistry – does that.  I do, too.  An article on MedIndia, a respected medical site, at http://www.medindia.net/patients/lifestyleandwellness/alkaline-diet.htm explains this:

“A pH of less than 7 is acidic and a pH of more than 7 is alkaline, water being neutral with pH=7. Since one of the most important measurements of health is the pH of the body fluids, it is very important to have an acid-base balance. Any imbalance, especially those leaning towards acidic, could be associated with health disorders including obesity, tiredness, premature aging, heart disease, diabetes and cancer.”

Reminder: “The pH of a solution is a measure of the molar concentration of hydrogen ions in the solution and as such is a measure of the acidity or basicity of the solution.” Thank you, Hyperphysics at http://hyperphysics.phy-astr.gsu.edu/hbase/chemical/ph.html for the definition.

Did you catch diabetes in the MedIndia quote? That is the number one cause of Chronic Kidney Disease. This is what I wrote about that in my first What is itCKD book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“In fact, the U.S. has the highest rate of CKD with 210 people per million having it, and two thirds of those cases caused by diabetes or HBP.”

And that was back in 2011. Two thirds of 210 people per million. .. and we don’t know how many of them developed CKD from HBP – or diabetes. Taking no chances, I’ll opt for alkaline balance in my body, even though I already have Chronic Kidney Disease.

Next question: how does apple cider vinegar help keep a body in alkaline balance? Let’s go back to last week’s blog again.

“Body Ecology at http://bodyecology.com/articles/acidic-foods-and-acid-forming-foods-do-you-know-the-difference had exactly what I needed:

‘To clear up some of the confusion:

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

All right then, we get it that something acidic – like vinegar – could actually be alkaline once it’s ingested. And we understand that an alkaline balance can keep us healthier. But we have CKD. Is apple cider vinegar something we can take?

Kidney Hospital China at http://www.kidneyhospitalchina.org/ckd-healthy-living/961.html was helpful here, although I am still leery of websites that offer online doctor advice. They maintain that it can lower your blood pressure – a good thing since high blood pressure is not only a cause of CKD, but also can make it worse. They also consider it an anti-inflammatory, although I’m beginning to wonder if all alkaline foods are. Then they mention it helps prevent colds and removes toxins in the blood. Both will help relieve some of the kidney’s burden.

This warning was the first I’d seen in all the blogs and natural eating sites I perused for information about today’s topic… and it comes from Kidney Hospital China:

“Apple cider vinegar is high in potassium and phosphorus, so kidney disease patients who have high potassium and high phosphorus levels in blood need to avoid the intake of the drinks.”

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I referred to an article entitled Vegetarian diet helps kidney disease patients stay healthy in order to point out why we need to keep our phosphorous levels low:

“Individuals with kidney disease cannot adequately rid the body of phosphorus, which is found in dietary proteins and is a common food additive. Kidney disease patients must limit their phosphorous intake, as high levels of the mineral can lead to heart disease and death.”

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In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I succinctly reminded us why we want to watch our potassium intake:

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

All in all, I think this might be a go. Do talk it over with your nephrologist or renal dietician before you start on a regiment of apple cider vinegar. I only research; they’ve been to medical school. By the way, many of these sites talked about the pleasing taste of this drink. I may have to try it just to see if any drink containing vinegar tastes good.

I have not forgotten that I promised to give you the link to the most recent podcast. I had thought the topic was going to be my Chronic Kidney Disease Awareness Advocacy, but the skillful interviewer – Mike G. – managed to cover every aspect of my life.

Until next week,

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!

Why Not Here?

Having had no particular medical issue of my own this week – finally! – and none for anyone else in the family, I was casting about for something I’d like to write about when I found this in my files. It’s from SBS, which is self-described as, “…multilingual and multicultural radio and television services that inform, educate and entertain all Australians and, in doing so, reflect Australia’s multicultural society.” You can find this particular article at http://www.sbs.com.au/news/article/2014/05/28/doctors-hope-new-test-will-arrest-kidney-disease-deaths.

Australia“’The State of the Nation: Chronic Kidney Disease in Australia’ report by Kidney Health Australia shows while one in 10 adults have kidney disease, only one in 100 know they have it. But Kidney Health Australia medical director Tim Mathews said that could be about to change thanks to a new take-home test distributed by pharmacists.

‘Pharmacists have an opportunity to identify people at high risk of kidney trouble – those who present with a prescription for diabetes and for high blood pressure are the two groups we’re focusing on,’ Dr Mathews said. ‘So that’s an opportunity for them to have a dialogue with the patient and see if they’ve had their kidneys checked, and if not, offer them a urine test which the patient then buys and takes home to test in their own privacy. At the moment we know in General Practice, only 40 per cent of diabetics are having a urine test each year – we would hope to push that number up by this program. ‘”Urine_sample

Of course, I know that we’re not in Australia and that this is from almost two years ago, but think of it! Here we are desperate to spread Chronic Kidney Awareness so that people will know to be checked for the disease while the Australians are already doing something about people getting tested.

Why can’t we do that? Or are we already doing that? If we aren’t, why not? It just seemed such a simple aid to informing people they need to be tested.

What is it

 

SlowItDownCKD 2015 Book Cover (76x113)

 

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I’ve written four books about CKD and I know I haven’t covered this possibility in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2, or SlowItDownCKD 2015. Why not? Because the idea is just so simple, so obvious, that I never thought of it. Let’s see if anyone else in the U.S. has.

Hmmm, I did find this from EurekAlert at http://www.eurekalert.org/pub_releases/2016-01/cpa-pkt012616.php :

“Pharmacists who screened at-risk patients for chronic kidney disease (CKD) found previously unrecognized disease in 1 of every 6.4 patients tested, according to a study to be published in the January/February 2016 issue of the Canadian Pharmacists Journal.”

Sorry, wrong country – although we’re at least on the right continent now. I think I just found one… nope, that’s in England. Wait, there’s AJKDsomething in the American Journal of Kidney Disease… oh, it’s an editorial proposing pharmacists keep on the lookout for those at risk for CKD. Will you look at that! This was proposed in 2004, a dozen years ago. Canada, UK, Canada. No, nothing for the USA.

I know my pharmacist is very, very careful to check that the drugs I’m prescribed are those that will not harm my kidneys. You’ve probably already read several of my blogs about that. In the last one, I wrote about how a doctor covering for my primary care physician would not listen when I told him I had CKD and that my pharmacist told me point blank not to buy the drug he prescribed, then called him to make certain he understood why this drug was not one for CKD patients. He didn’t listen to me; she did… and then made him listen to her.

On a personal note, we had an extremely quiet third anniversary since I had the flu and Bear had a new diagnose of his own to deal with. I’m gladIMG_2394 we’d gotten to the symphony beforehand and we’ll just have re-arrange the dinner out with some of the kids. We’ve got that little vacation in Texas to look forward to next week. I’m sure we can find a way to celebrate there. Thank you for your warm wishes. I was surprised at how many people remembered.

I’m lucky. I have never felt alone, not even with the CKD diagnose. But some of my readers have let me know how very alone they feel with their illness even though family and friends are supportive. That’s why I want to let you know about The National Kidney Foundation’s Peers. The following is from their website at https://www.kidney.org/patients/peers.

“Do you need help adjusting to life with kidney disease? Or want to learn more about treatment options? NKF Peers is a FREE, telephone-based peer support  program from the National Kidney Foundation.   The program matches those in need of support with a peer mentor who has  been through a similar situation. You’ll connect with your mentor through a free, private phone system so you won’t have to disclose your personal phone number….

About NKF Peers

  • A national, telephone-based peer support program from the National Kidney Foundation
  • Connects people who want support with someone who has been there
  • Helps people adjust to living with chronic kidney disease, kidney failure, or a kidney transplant.

Also offers support to those considering living kidney donation or who have been have been living kidney donors.

NKF-logo_Hori_OB

 

 

How do participants interact with each other?

  • Participants are connected through a toll-free, automated telephone system. No one discloses personal phone numbers or incurs long-distance charges.
  • The automated telephone system allows participants to leave voicemail messages for their partners and block calls at certain hours.
  • Telephone services are provided free-of-charge by the NKF.

To learn more: Call 855-653-7337 (855-NKF-PEER) or email nkfpeers@kidney.org”

Of course, you can always drop a question or a comment on SlowItDownCKD’s Facebook page and I’ll research whatever you’re asking about… with the provision that you understand I am not a doctor and that you need to speak with your nephrologist before taking any action on my advice.kidney.jpg If it’s private, you can email me at SlowItDownCKD@gmail.com …with the same provision. By the way, I’m available 24 hours a day, seven days a week.

Do take a look at the new book. I’m really proud of this baby.

Until next week,

Keep living your life!

Still Getting Birthday Gifts… like OAB

happy birthdayBear has just spoiled me and spoiled me for this birthday. It was not a special birthday, just a birthday. His reasoning, “I’m celebrating being with you for another year.” Which, of course, made me think. My first thought? I realized how much I liked being adored by the man I love.

My second?  Time changes things.  Your weight changes.  Your hair color changes.  Even your height changes. There are those that say aging is a problem. I say if you’re aging, you’re alive so it’s not a problem, but rather something to which you need to adapt.

Part of the birthday celebration was an overnight at The Desert Rose Bed and Breakfast in Cottonwood. The place was unique. They house animals they’ve rescued: llamas, cats, chickens. I thought the llamas were the most picture worthy, but then I’d never seen the kind of fluffed out rooster they had. Up the hill was a goat farm. For a city woman like me, this was heaven.

Except – there was this – there were no hand rails on the steep path from the house to the animals. Nor were there steps. The runoff from a recent hose cleaning of some apparatus near the house caused the loose gravel covered road to be slick. So we took teeny little ‘old person’ steps while the owner, a young woman possibly in her thirties, practically scampered. We got to see the animals, but we had to adapt how we got to them due to our age related capabilities.llama

The private bath was another eye opener for me. Bear opted for the room with the spa. It was so relaxing and could have even been romantic except that there were no grab rails. We slipped, we fell, we worried if Bear broke his foot.  But it was supposed to be romantic!

Oh well. There was also the kind of shower I’d only seen in magazines.  You know the kind that could easily fit six people (uh, not my style) with two separate shower heads – one on each end of the shower. This was a new toy for me, until the floor got wet. Again, no grab rails. There was no safety mat on the shower floor, either. So we tried to hold on to the walls. Hah! They were tile that was just as slippery.

You get the point?  This was a beautiful, romantic, upscale bathroom… and wasted on us because there were no safety features to accommodate our gifts from aging. Of course, not everyone would have felt this way, but we each have neuropathy which can make balancing difficult.

shoqweIn addition to grab bars in our at home bathrooms, we have no area rugs anywhere in the house. This is to cut down on the possibility of tripping. When our primary care doctor suggested ways to prevent injuring ourselves, we listened. Bear’s time flat on his back after his foot surgery convinced us we never wanted to go through that again. For me, with my ‘age related’ macular degeneration, we also use ultra-bright LED bulbs throughout the house.

Okay, so where am I going with this? I’m circling in on the kidneys via urination. Remember the kidneys produce urine which is stored in the bladder.  I wanted to know what was usual for people ‘our age’ and why. After all, I’d made the bathrooms as safe as possible understanding that one or the other of us was going to get up during the night to urinate.

I turned to The Cleveland Clinic at http://health.clevelandclinic.org/2015/12/stop-full-bladder-killing-sleep/ for some help.

“If you’re urinating more than eight times in 24 hours, that’s too much. A lot depends on your age. And if you’re between age 65-70 and going more than twice a night, you should make an appointment with your doctor. Also, see a doctor if you are getting up more than once a night if you are between age 60-65, and more than three times each night if you are age 70 or older. While your bladder’s capacity does not necessarily decrease with age, the prevalence of overactive bladder increases with age.”

Apparently, an overactive bladder may also lead to increased falls. Not fair! We’re already dealing with the neuropathy to avoid this. Oh, right. “…if you’re aging, you’re alive so it’s not a problem, but rather something to which you need to adapt.”detrusor

I wonder if aging is a factor because the detrusor (bladder muscle) ages right along with the rest of you.  A long time ago, I explained that my Chronic Kidney Disease was caused by nothing more than growing older. I hate to admit it, but it does make sense. All of you ages when you age, not just certain parts.

What is itBirthday giveaway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease! All you have to do to win is be one of the first three people to enter the contest and follow SlowItDownCKD on Twitter. Here’s link to enter for a chance to win: https://giveaway.amazon.com/p/542abbec7a52e10a#ln-fo

I hope you’re keeping an eye on P2P’s Chronic Illness Buy and Sell’s contest. I’ll be gifting a copy of one of my Chronic Kidney Disease Books to three different winners.  Each winner will receive a different book. This one started February 1st and runs until St. Valentine’s Day.  Here’s the address: http://www.facebook.com/groups/P2PBuy.Sell. You do need to be a member of the group, tag yourself in a comment below the announcement of the contest, and be involved with kidney disease as a patient or caretaker.

My accountant (Yep, working on those this week.) thinks I’m nuts to be part of so many giveaways and contests, but my mission… no, my passion… is to get information about Chronic Kidney Disease out to as many people as I can, in as many ways as I can, for as long as I can.

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To that end, Phoenix area readers, please let me know if you are interested in joining Team SlowItDownCKD for this year’s kidney walk at Chase Stadium on Sunday, April 17.

Until next week,

Keep living your life!

Damned If You Do and Damned If You Don’t.

It is absolutely amazing how many things can go wrong with the human body.  Some, such as cancer, are drastic while others, like a general feeling of being unwell or fatigue (sound familiar, Chronic Kidney Disease sufferers?), are not. For example, Bear has developed the Helicobacter pylori infection. This, according to MedlinePlus (part of the U.S. National Library of Medicine) at https://www.nlm.nih.gov/medlineplus/helicobacterpyloriinfections.html  is

H. Pylori a type of bacteria that causes infection in the stomach. It is found in about two-thirds of the world’s population. It may be spread by unclean food and water, but researchers aren’t sure. It causes Peptic ulcers and can also cause stomach cancer.”

That made me nervous.  I immediately (and unfairly) blamed the food we’d eaten during our almost recent cruise to the Caribbean – specifically, during our ports of call in Haiti and Jamaica – and debated phoning my brothers and sisters-in-law right away… oh, and getting myself checked. After all, it was either a simple blood or breath test. Our primary care doctor preferred the blood test.

That decision was sort of a mistake. Our usual – and very good – phlebotomist was out that day having taken a sleep test (Good for her!) in a faraway part of the valley the night before and couldn’t make it in, so a daily temp did the drawer. Oh! That was almost a week ago and I still have a three inch black and blue mark on the puncture site.  I want my regular phlebotomist.

I know, I know, get back on topic.  I didn’t make those calls because my test came back negative… so it wasn’t the food at the ports of call.  Well, then what caused Bear’s infection? WebMD at http://www.webmd.com/digestive-disorders/h-pylori-helicobacter-pylori tells us,

“Many people get H. pylori during childhood, but adults can get it, too. The germs live in the body for years before symptoms start, but most people who have it will never get ulcers.”

That made sense. As a child, Bear spent his summers on his grandfather’s farm and participated in whatever chores a child his age could perform. This is not to say the food or water on the farm were unclean, but

“…H. pylori bacteria may be passed from person to person through direct contact with saliva, vomit or fecal matter…. Or “Living with someone who has an H. pylori infection.”

Thank you for that information Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/h-pylori/basics/risk-factors/con-20030903.

Considering the existence of this type of infection wasn’t discovered until 1982 and Bear was a child way before then, he may have contacted it in the manner described above.

Of course now you’re wondering what the heck we were going to do about it, no matter how my poor hubby developed it since it could have drasticantibiotics consequences if we didn’t. (Long sentence there.) MedicineNet.com at http://www.medicinenet.com/helicobacter_pylori/page8.htm explains:

H. pylori is difficult to eradicate from the stomach because it is capable of developing resistance to commonly used antibiotics. Therefore, two or more antibiotics usually are given together with a PPI and/or bismuth containing compounds to eradicate the bacterium. (Bismuth and PPIs have anti-H. pylori effects.)”

Is it effective? We don’t know yet, since Bear is in the middle of the regiment.  However, I’ve read that sometimes the infection can re-occur even if this treatment is successful and that the blood test is not a good choice to re-test after the medication has been finished. One step at a time, folks, one step at a time.

While I’m concerned about Bear, I also wanted to know how this might affect someone with Chronic Kidney Disease who developed it. It seems that it doesn’t until you reach End Stage Chronic Kidney Disease. Since I don’t know much about dialysis or any of the other end stage blood cleansing methods I can only give you information about the little I understood.

pepticOne is this conclusion from a PubMed.gov study at http://www.ncbi.nlm.nih.gov/pubmed/24907021.

“The H. pylori infection rate is lower in PUD patients with CKD and ESRD than in those without CKD.”

Ugh! Alphabet soup PUD is Peptic Ulcer Disease; CKD is Chronic Kidney Disease; and ESRD is End Stage Renal Disease.

But then I found a more negative study on Medscape at http://www.medscape.com/viewarticle/843877.

“This is currently the largest nation-based study in which the risk of ESRD in H. pylori-infected patients was examined. H. pylori infection was associated with a subsequent risk of ESRD. H. pylori-infected patients with concomitant chronic kidney disease (CKD) or cardiovascular disease (CVD) risk factors were at higher risk of ESRD than were those who had a single CKD or CVD risk factor.”

I also found it interesting that the stomach medication Omeprazole, which has just been linked to CKD, is prescribed along with antibiotics to treat H. Pylori. Now there’s a Catch 22. You can take it as prescribed for your infection, the medication may damage your kidneys, or you can not take it and have the infection damage your kidneys anyway.

Ouch!  Enough of this gloom and doom.  Tomorrow is my birthday and that means gifts for you.  I am giving away one copy of each of my kidney disease books: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 1; and The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 2.IMG_1398

What is it

 

What do you have to do to receive your gift? Simply be one of the first three people to like my Facebook page: SlowItDownCKD and leave a comment about Chronic Kidney Disease. The first person to do so will receive a copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, the second will receive a copy of The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 1, and the third of the three will receive a copy of The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 2. Don’t forget to leave the comment. Enjoy my birthday, everyone.

Until next week,

Keep living your life!

Good Enough 

Yesterday, I carefully applied my eye liner, examined myself in the magnifying mirror, nodded to myself and murmured, “Good enough.” I’ve been saying that an awful lot lately and finally realized – once a valued, constant reader asked about the connection between worsening vision and Chronic Kidney Disease – that it may be due to my CKD.

This, after I’ve spent years attributing “Good enough” to the slowest developing ever case of macular degeneration,  the age related need for reading glasses, and my impatience with makeup. Of course, then I remembered that I couldn’t read a darned thing without the reading glasses and, that without ample light, even they didn’t do the trick.eye liner

Back to the drawing board, ladies and gentlemen. Here’s what DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/eyes-and-chronic-kidney-disease/e/4732 has to say about CKD and vision.

Diabetes and high blood pressure aren’t only the leading causes of chronic kidney disease (CKD). They’re also the leading causes of eye disease and loss of vision. If your renal disease is a result of either condition your vision may be at risk.

Some of the most common eye problems that occur in CKD patients are retinopathy, cataracts and glaucoma.”

Here are some quickie reminders before we continue. The American Diabetes Association at http://www.diabetes.org/diabetes-basics/  tells us, “Diabetes is a group of diseases characterized by high blood glucose levels that result from defects in the body’s ability to produce and/or use insulin.”

Book CoverI turned to What Is It and How Did I Get It? Early Stage Chronic Kidney for a reminder about high blood pressure: “A possible cause of CKD, 140/90mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too.”

However, the American Heart Association has changed this a bit as of Dec. 2013. “The American Heart Association maintains its recommendation of initiating treatment — starting with lifestyle changes and then medication if necessary — at 140/90 until age 80, then at 150/90.” Yet, The Journal of the American Medical Association maintains that people over 60 should not be considered hypertensive until they register 150/90.

While that’s not new information to me, I did wonder how hypertension could affect your sight. The American Academy of Ophthalmology at http://www.aao.org/eye-health/ask-eye-md-q/how-does-high-blood-pressure-affect-vision came to the rescue here.

“If the blood pressure is very high it can be called malignant hypertension and cause swelling of the macula and acute loss of vision. Otherwise hypertension can cause progressive constriction of the arterioles in the eye and other findings. Usually high blood pressure alone will not affect vision much, however hypertension is a known risk factor in the onset and/or progression of other eye disease such as glaucomadiabetic retinopathy, and macular degeneration as well as blocked veins and arteries in the retina or nerve of the eye that can severely affect vision.”

My first response to this information was, “What’s an arteriole? A small artery?”  Time to find out. I turned to my old friend MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2335 for the definition.arteriole in eye

“A small branch of an artery that leads to a capillary. The oxygenated hemoglobin (oxyhemoglobin) makes the blood in arterioles (and arteries) look bright red.”

That makes sense.  Do you remember what glaucoma and/or macular degeneration are?

Back to another trusted source for one of the definitions: The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/glaucoma/basics/definition/con-20024042.

“Glaucoma is a group of eye conditions that damage the optic nerve, which is vital to good vision. This damage is often caused by an abnormally high pressure in your eye.”

I sort of, maybe, remembered writing about macular generation in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.Digital Cover Part 2 redone - Copy Sure enough, I found it.

“An eye disease that progressively destroys the macula, the central portion of the retina, impairing central vision. Macular degeneration rarely causes total blindness because only the center of vision is affected.” (according to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=10027). Oh, MedicineNet again.  That’s a good source for easily understood medical definitions if you’re looking for one.

Let’s say you don’t have diabetes or hypertension.  Does CKD affect your vision then?  Interestingly enough, most sites I pulled up talked more about CKD being caught during an eye exam than CKD causing vision problems… except in diabetic End Stage Renal Disease.  This is when you need to have your eyes carefully checked and often.

PubMed, part of the US National Library of Medicine, National Institutes of Health, at http://www.ncbi.nlm.nih.gov/pubmed/21784818 puts a bit of a different spin on the vision/CKD exploration. “Retinal abnormalities are common in inherited and acquired renal disease.”

journal_logoWow! This is from an older study – 2011 – conducted by the well-respected Clinical Journal of the American Society of Nephrology.  I don’t know if my CKD is inherited or acquired, but it is renal disease and I do have vision problems… and so does my valued, constant reader.

By the way, blurred vision may be an indication that you are suffering from uremia. This reminder brought to you by the Renal Network’s Kidney Patient News at http://www.kidneypatientnews.org/ckd/index.php.

Of course, I can almost hear some of you asking what uremia is.  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was DIGITAL_BOOK_THUMBNAILof help here: it’s “the buildup of waste in the blood due to kidney failure.”

I really enjoy learning from the research I do to answer your questions, so thank you for another opportunity to do that. Just keep in mind that I’m not a doctor and you need to ask these questions of your nephrologist who will answer them or refer you to another specialist if need be.

Another birthday approaches – which I consider another opportunity to give you gifts.  Keep your eye on P2P’s Chronic Illness Awareness Buy and Sell’s page on Facebook and SlowItDownCKD on Facebook, Twitter, and Instagram in addition to this blog for Book Give- Away announcements.happy birthday

Last but not least, The  17th Annual Southwest Nephrology Conference and 4th Annual Convention of Cardio Renal Society of America will be held right here in Arizona at the We-Ko-Pa Resort & Conference Center in Scottsdale. The dates are March 11-12. I’ll be attending part of the time. Why not meet me? Register at www.swnc.org or by calling 1 (877) 587-1357.

Until next week,

Keep living your life!

Another Cause of CKD?

180116_10150140748275850_2010917_nI’ve mentioned before that I’d been an actor for decades before I retired from this maybe four years ago.  As happens when you’re lucky, I’ve remained friendly with some of the wonderful people I met through the plays and/or movies I’ve been in.  One such friend – James David Porter, a talented scriptwriter, director, actor, founder of Arizona Curriculum Theater, and an extremely intelligent person – is cognizant of both my Chronic Kidney Disease and my awareness advocacy for the disease.act

You probably already know about the warnings re heartburn and kidney disease … so is he. As soon as the news hit general sites, he posted it to my personal Facebook page.  I’d already picked up the information about this from the medical sites I belong to, but he didn’t know that. I love it when my friends look out for me.

And I, in turn, want to look out for you. That’s why I’ll be writing about the problem today. Let’s go way back to the beginning for this one.

I had had something: heartburn, upset stomach, acid reflux??? a few months ago. Not having experienced digestive problems before I didn’t know what it was. Heck, I didn’t even know if it was a digestive problem, but I knew I couldn’t take the nausea and sensitive stomach too much longer without investigating.  After weeks of this not going away on its own, I made an appointment with my trusted primary care doctor.

While I was waiting for the appointment, I took a look at Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. although I bookcan only understand some of it and we know how dangerous a little knowledge can be. According to what I read, it didn’t seem that I had an ulcer. Hmmm, maybe gastritis?

Something seemed off with what I was reading, sort of out of sync, so I checked copyright date. Uh huh, the book is 14 years old… and outdated. Time for a newer edition.  Case in point and message sent: check the copyright dates of any medical texts you have.  They get outdated fast these days.

Okay, let’s see what the doctor had to say. She addressed my ‘abdominal pain in the pit of my stomach’ and the nausea, diagnosing it as ‘epigastric pain’ and nausea. Well, how is that different from stomach pain?

The stomach is defined by WebMD at http://www.webmd.com/digestive-disorders/picture-of-the-stomach in this way:

“The stomach is a muscular organ located on the left side of the upper abdomen. The stomach receives food from the esophagus. As food reaches the end of the esophagus, it enters the stomach through a muscular valve called the lower esophageal sphincter.

The stomach secretes acid and enzymes that digest food. Ridges of muscle tissue called rugae line the stomach. The stomach muscles contract periodically, churning food to enhance digestion. The pyloric sphincter is a muscular valve that opens to allow food to pass from the stomach to the small intestine.”

stomach_72I always get the stomach and the abdomen mixed up, so I looked that up too. Healthline at http://www.healthline.com/human-body-maps/abdomen#seoBlock was helpful here.

“The abdomen is the area below the chest and above the pelvis. It is comprised of muscles, vertebrae, ribs, blood vessels, nerves, and several vital organs, including the liver, small intestine, large intestine, and kidneys.”

Oh, so the stomach is part of the abdomen.

We still need one more definition here: Epigastric. According to The Free Dictionary at http://www.thefreedictionary.com/epigastric, that means, “The upper middle region of the abdomen.” Ah, another part of the abdomen.

The good doctor prescribed 40 mg. of Omeprazole each morning before breakfast. Omeprazole’s generic name is Prilosec. I saw nothing in the pharmacy handout for this medication that related specifically to CKD.

However, the risk doesn’t seem to be to me since I already have CKD but to those who use these drugs who do not yet have CKD. I do wonder if it could cause Acute Kidney Injury or acute interstitial nephritis (both short term as opposed to chronic) in those who both already suffer from CKD and use these drugs since it’s not made clear in the articles.

There are many versions of this announcement but I’ll be using the one from HealthDay at http://consumer.healthday.com/gastrointestinal-information-15/heartburn-gerd-and-indigestion-news-369/ppis-and-kidney-disease-706877.html since it is the least medicalese one I’ve located.

gastro“MONDAY, Jan. 11, 2016 (HealthDay News) — A type of heartburn medication called proton pump inhibitors may be linked to long-term kidney damage, a new study suggests.

Prilosec, Nexium and Prevacid belong to this class of drugs, which treat heartburn and acid reflux by lowering the amount of acid produced by the stomach.

People who use proton pump inhibitors (PPIs) have a 20 percent to 50 percent higher risk of chronic kidney disease compared with nonusers, said lead author Dr. Morgan Grams, an assistant professor of epidemiology at Johns Hopkins University in Baltimore.

The study was published Jan. 11 in JAMA Internal Medicine.

The study doesn’t establish a direct cause-and-effect relationship between the drugs and chronic kidney disease. However, Grams said, ‘We found there was an increasing risk associated with an increasing dose. That suggests that perhaps this observed effect is real.’”

This information is brand, spanking new. I would suggest speaking to your doctor if you are taking one of these medications. I would not suggest doing anything – such as stopping without medical advice – in a panic.  I’m a nut about my health and even I spoke this over with my PCP, who I might mention, is a highly collaborative doctor, one who listens to what I have to say and talks it over with me. Now that’s the way to have a doctor.

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Book news!  The twins will have a little brother this year. Translation: There will be another Book of Blogs, although I think it’s time for a less unwieldy title. Maybe something like SlowItDownCKD: 2015. Also, my birthday is February 2, so Facebook’s P2P’s Chronic Illness Buy & Sell and I are cooking up a little online birthday party. You’re all invited.What is it

Until next week,

Keep living your life!

Electronically Speaking

Happy New Year to each and every one of you.  It gives me great pleasure to start the first blog of 2016 with good news: Suzanne Kelly has won a DIGITAL_BOOK_THUMBNAILcopy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 by being the first reader to comment on the last blog of 2015. Suzanne, please email me at SlowItDownCKD@gmail.com with either your address or that of the friends you thought would benefit from having this book… and thank you for the opportunity to start off the New Year with good news.

I’ve been looking at quite a few CKD pages on Facebook and was, once again, reminded how quickly things change. Only one of the three pages I listed in 2011’s What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is still in existence.  That’s The Transplant Community Outreach with 5,897 members which is “… an online support group of individuals and families who are recipients, are waiting for a transplant, are donor family members, caregivers, or those who have a connection with organ What is itdonation and transplantation.” I like that they’ve asked me to post this blog weekly, although it is about moderate stage chronic kidney disease.

I offered another list of such pages in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 which was published only last year.

  • Kidney Disease and Diet Ideas and Help 1
  • Show Your Scars Tour
  • Kidney Disease Is Not a Joke
  • The Transplant Community Outreach {I write Kidney Matters for them at their request.}
  • Renal Patient Support Group
  • Chronic Kidney Disease
  • P2P {Peer To Peer}
  • But You Don’t Look Sick
  • TCO Women’s Health
  • Kidney Disease Shout BoardDigital Cover Part 2 redone - Copy

To the best of my knowledge, Show Your Scars Tour, Chronic Kidney Disease, and TCO Women’s Health are no longer with us. But, there are loads of additional pages for us, including some secret groups that I don’t think I’m at liberty to write about. Comment if you’d like to know more about secret groups and I will gladly contact the administrator of the appropriate one for you. Some of the other pages I read are:

  • Kidney Advocates which is a brand new page administrated by the ever striving advocate, James Myers. This man has invited me to post the blog on every page he’s involved with.  If it’s possible, he may be more serious about advocacy than I am.
  • Kidney Disease Ideas and Diet 1 (not to be confused with Kidney Disease and Diet Ideas and Help 1) whose former administrator has become an online friend since we share so many of the same issues in our personal lives. The purpose of this page is simple: “…Sometimes in Unhealthy%20Kidneylife we need a little hand up. Battling kidney disease and getting new dietary instruction can be hard. Every stage is different. We are here to help.”
  • Stage 3 ‘n 4 CKD Kidneybeaners Gathering Place, a smaller, highly active group moderated by my favorite weisenheimer, Robin Rose, who – as a lay person – has an incredible understanding of medicalese. As she writes, “Stage 3 ‘n 4 CKD is a unique place to live – predialysis medicine isn’t that available… so we gather together to share, to support, to learn, to research, and to thrive together… speak your story, your experience, your feelings, your research… let’s commit to staying healthy together!”
  • Women’s Renal Failure Support Group which is fast becoming a favorite since I can be a bit of a prude, but this is women only (as they have to keep reminding men who try to post on the page).

These are some I’m active on are (in alphabetical order):

British Kidney Patient AssociationGFR

Chronic Kidney Disease Support Group

Dialysis & Kidney Disease

GM Kidney Information Network

I Hate Dialysis

kidneys5Kidney disease isn’t for sissies

Kidney Disease, Dialysis, and Transplant

MANI TRUST

People on dialysis

Renal Patient Support Group

There’s even a page for the buying and selling of Chronic Disease paraphernalia which is called, appropriately enough, P2P’s Chronic Illness Awareness Buy & Sell and administered by Sandie Jones who is also the administrator of Peer to Peer (P2P). That’s no surprise, but it is innovative.

And last, but not least, we have (ahem) SlowItDownCKD where I post Chronic Kidney Disease related medical tidbits that I’ve found by perusing different medical sites, Twitter, Instagram, Pinterest, newspapers, medical journals, even medical texts. I am limited as to what I post since I’ve made it a firm policy to post only what I understand. Whoops, there go the CKD diet cookbooks right out the window.kidney-book-cover

These posts also appear on Twitter as @SlowItDownCKD. I have found some really CKD informative people or organizations to follow there. My all-time favorite is @kidney_boy, nephrologist Joel Topf, who answers my questions and includes me in as much nephrology work as he can considering I’m a layman. Lay woman?

Same for @nephondemand (Dr. Tejas Desai) who also answers whatever I ask. I also follow nurses, doctors, teaching institutions, renal dieticians, anyone who is some way connected to CKD.

I am surprised every time a doctor, nurse, teaching institution, or renal dietician follows me. I make it very clear that I am NOT a doctor, just a layman (Oh, here we go again: lay woman?) who has Chronic Kidney Disease and wants to make certain everyone, everywhere in the whole wide world, is aware of its existence so they’ll get tested.

happy birthdayAh ha! You are hereby notified that I intend to give presents on my birthday, which is February 2. No, it’s not my 70th yet; that’s next year.  I just like to give presents.  Keep an eye on the Facebook page P2P’s Chronic Illness Awareness Buy & Sell for details as they’re released.

Here’s hoping 2016 is, indeed, Sweet 16 for you. There’s nothing wrong with making each new year the best year you’ve had yet.  Gratitude and service are the way to go in my book (Yep, I’m punning.)fireworks

Until next week,

Keep living your life!

Last One

Between my indexing work on The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  and that of Amy Hall at AmethystHarbor.com (indexer par excellence) on The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, you can email me at slowitdownckd@gmail.com for an index for the copies of the books you already bought.  I’ll need your email address and which index you need: Part 1 or Part 2 or both. This is my Chanukah gift to you.

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And let’s not forget What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, the twins’ big sister.

What is it

Ready for the blog? This is the last piece in a series on what I call wellness supplement plans. My good buddy, Mary Dale at (480) 415 – 7748 or Mary.Dale@rocketmail.com (love that email address) tried this one and liked it so much that’s she’s recently become a distributor. Note: Mary – thankfully – is not a Chronic Kidney Disease patient. Her information above is not for the purpose of promoting the product to CKD patients, but something to pass on to non-CKD friends should they become interested.it works

The plan Mary uses is called It Works!  You can find information that I may not be including in today’s blog at ItWorks.com. The home page allows you to choose your country and language, but offers no ingredient labels. Rather, the ingredients are listed without percentages or specifics. It struck me as more of a selling and keeping up with new products page. I couldn’t use the information for the blog.

I did find this interesting. (Mark Pentecost is the founder of the company.)

“The more I got into the education of a vitamin, I started learning more about what’s all natural versus synthetic,” says Mark. “A lot of times you’d find that a product might have 100-200 ingredients, but there wasn’t enough of each ingredient for the product to actually do what the clinicals showed they could do. You want something foundational that you know has the key ingredients to help keep us healthy and be the best we can be.”

Okay, all natural is good.  But how much of what was in each product?

Ugh. What was I going to do now? I could change the topic… but wait. Mary’s buddy, Allie Helm, called me with directions as to how to get into the site to a spot where I could see just what I needed. Great timing, ladies.

409px-Glass-of-waterI thought I’d start with Allie’s favorite, which is Greens On The Go {Orange} Alkalizing Drink Powder. The directions say to mix the powder with 8 ounces of water or fruit juice. I started looking at the ingredients when ‘silica’ at the bottom of the page caught my eye. I knew about occupational silica, but what about this in a supplement?

Livestrong.com at http://www.livestrong.com/article/288425-side-effects-of-silica-supplements/#sthash.9dJB8q7k.dpuf tells us,

“The University of Maryland Medical Center says that prolonged use of silica supplements in any form is not recommended. Severe kidney trouble may occur after prolonged use. Kidney stones have been reported in people taking silica supplements, which may be due to a buildup of silica in the body since only a small amount is needed for the body to function properly. Also, general kidney deterioration, which is irreversible, will eventually occur with excess silica in your system.”

Well, that’s out for Chronic Kidney Disease patients. Let’s take a look at Mary’s favorite product. She likes the Advanced Formula Fat Fighter with Carb Inhibitors. The directions read, “Adults take 2 tablets during or up to 60 minutes after each large meal. Drink at least 8 glasses of water daily.” Hmmm. Above the directions, there’s a caution: “Consult your physician if you… have a medical condition.”

We do. We have Chronic Kidney Disease.

I never even got to the ingredient label with this one.  My eye was snagged by the Other Ingredients, one of which was also silica. Another is dicalcium phosphate, better known as phosphate salts. Awwww. As CKD patients, we need to watch both the phosphorous and sodium in our diets without adding any in supplements. Nuts, I really liked the idea of something thatbelly fat

‘…will absorb the fat and carbohydrates from your food so that your body doesn’t.”

Not only that, but here I am doing my best to avoid Type 1 Diabetes and this product also claims that it “Helps balance blood glucose level…”

Dirty words.  I knew it was too good to be true – at least for a Chronic Kidney Disease patient.

I guess we’ve learned our lesson this month, ladies and gentlemen.  While each of the products may or may not be just the ticket for those without CKD, we do have CKD… which means they are not all for us. I am disappointed, but as I always say, “My kidney function comes first.”

Talking about that:

WHAT: Free Community Health ScreeningNKF-logo_Hori_OB
WHEN: Saturday, December 5, 2015 from 8:00am-1:30am (appointments highly encouraged)
WHERE:  First Institutional Baptist Church | 1411 E. Jefferson Street, Phoenix, AZ 85034
WHO: Participants must be 18 years of age or older AND
a) have a family member (father, mother, brother, sister) with diabetes, heart disease or kidney disease
OR b) participant must have a personal history of diabetes or high blood pressure.

TO MAKE AN APPOINTMENT: Please call (602) 840-1644 English / (602) 845-7905 Spanish

Path to Wellness is a free community health screening program provided by the National Kidney Foundation of Arizona in collaboration with the Cardio Renal Society of America and other local health organizations.  Screenings are held throughout the state of Arizona on a sponsored basis, and are open to the public.

They provide free blood and urine testing, which is evaluated on site 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.

Until next week,

Keep living your life!

It’s the Funniest Thing…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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.

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“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!

What If…

Have you ever become anxious about the unknown, specifically the future? You are not alone.  Since you have Chronic Kidney Disease, you are so the opposite of not being alone. You have a progressive disease, one which affects two of the most important organs your body possesses.

thCAQ0P7T3Most days, I wonder if I’ll stay at Stage 3A for the rest of my life or – despite my best efforts – I’ll end up on dialysis and need a transplant anyway.  It’s one of those things I try really hard not to dwell upon.

Whoops!  I did it again.  Let’s backtrack a bit so we all know what I’m writing about. I went back to the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the following definition of Chronic Kidney Disease (CKD).Book Cover

Chronic Kidney Disease:  Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

According to DaVita.com, Stage 3A means:

A person with stage 3 chronic kidney disease (CKD) has moderate kidney damage. This stage is broken up into two: a decrease in glomerular filtration rate (GFR) for Stage 3A is 45-59 mL/min and a decrease in GFR for Stage 3B is 30-44 mL/min.

There’s a wealth of Stage 3 information at http://www.davita.com/kidney-disease/overview/stages-of-kidney-disease/stage-3-of-chronic-kidney-disease/e/4749.

As usual, one definition leads to the need for another, in this case GFR.

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through Glomerulus-Nephron 300 dpi jpgthe glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

Many thanks to MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/007305.htm for the definition.

Uh-oh, now we need to define both dialysis and transplant. According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo

Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs.

There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.

As for transplant, WebMD at http://www.webmd.com/a-to-z-guides/kidney-transplant-20666 tells us

kidney transplant is surgery to replace your own diseased kidneys with a healthy (donor) kidney.

I should mention that while there are transplants from both living and cadaver donors, both will require lifelong drugs to prevent rejection.faq_kidney_transplantation

All right, now that our background is in place, let’s deal with that anxiety.  Why worry (ouch!) if you have anxiety and you have CKD?

I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for help here.

Digital Cover Part 1In the August 16, 2012 post, I included this.

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.

The information was originally published on PyschCentral.com at http://psychcentral.com/news/2012/08/01/even-mild-mental-health-problems-linked-to-reduced-life-expectancy/42487.html

Not to be too morbid, but our life expectancy may already be reduced due to our Chronic Kidney Disease. Now we’re reducing it even further with our anxiety… even though we certainly may have cause to be anxious?

Time to deal with that anxiety.  But first, what exactly is anxiety?

The Free Dictionary’s Medical Dictionary at http://medical-dictionary.thefreedictionary.com/Anxiety is fairly explicit about what it is.

Anxiety is a multisystem response to a perceived threat or danger. It reflects a combination of biochemical changes in the body, the patient’s personal history and memory, and the social situation…. a large portion of human anxiety is produced by anticipation of future events.

Nothing I want any part of! So how to I reduce my anxiety about my CKD so that I don’t further reduce my life expectancy?

I was so taken with Barton Goldsmith, Ph.’s advice that I wanted to post it all, but that would make this week’s blog far too long.  You can read what I omitted at https://www.psychologytoday.com/blog/emotional-fitness/201205/top-10-tips-reduce-anxiety

  1. If you are prone to anxiety you have two choices .Give in to it or learn to live with it.support
  2. When you wake up tomorrow start doing something right away, and keep busy all day. Taking action by doing something, almost anything, will help you work through your anxiety.
  3. Focus your attention on where the feeling of anxiousness is in your body and keep your attention there until the feeling moves or dissolves.
  4. Anxiety will grow if it’s not directed into some positive action.Find someone who needs you and lend him or her a helping hand.
  5. Talking to someone is one of the best ways to overcome your anxiety.
  6. Exercise is another good way to keep from letting your fears overwhelm you.
  7. Start a gratitude journal; write down three to five things that you are grateful for. Do this every night, it works and it’s very easy.
  8. The opposite of fear is faith.When you are anxious, a great way to get out of it is to find some faith. Believing that things will get better is sometimes all it takes to make it better.
  9. If watching the news fills you with anxiety – turn off the TV!
  10. Courage is not the absence of fear, but taking action in spite of fear.

Now it makes sense to me that Bear and I have a gratitude jar into which we drop a slip of paper containing one thing that made each of us happy each day. Now it makes sense to me that I look for ways to help others.  I think I’ve been warding off my own anxiety without knowing it.

Talking about not knowing, have you seen P2P’s Chronic Illness Awareness Buy and Sell page on Facebook?Part 2

Until next week,

Keep living your life!

A Connection You Can Do Without

McKee You know how you run into people you used to know every once in a while. That’s exactly what happened for me… but we discovered we had chronic disease in common. That’s why this one’s for Jeanne, a former colleague who is highly involved in spreading awareness of Scleroderma, just as I am of Chronic Kidney Disease.  Just as we have a connection, so do Scleroderma and Chronic Kidney Disease. (Cool way to slide into today’s topic, isn’t it?)

According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/scleroderma/basics/definition/CON-20021378, scleroderma is

a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, handsinternal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.

Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50. While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life.

Did you catch “such as blood vessels” and “internal organs” in that definition? And that there’s no cure? Are you beginning to see the connection?

Book CoverOn page 129 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I’ve defined an ACE inhibitor as “A blood pressure medication that lowers protein in the urine if you have CKD.”

So ACE inhibitors are helpful in CKD, but – as you’ll soon read – harmful in Scleroderma. We’ve probably all been in the position of having to choose the least harmful treatment, rather than the most helpful and here it is again.

The Scleroderma Care Foundation at http://www.sclerodermatt.org/articles/better-health/204 tells us:

Exposure to angiotensin-converting enzyme inhibitors prior to the onset of renal crisis in patients with Scleroderma increases the risk of death, according to 1-year findings from the prospective observational International Scleroderma Renal Crisis Survey.

I went to Scleroderma.Org for this chart to help us understand which type of Scleroderma affects the kidneys.types-scleroderma-chart

We can see that Systemic scleroderma is the one that we, as CKD patients, need to pay attention to.  The following is also from Scleroderma.Org.

Systemic scleroderma (systemic sclerosis) The changes occurring in systemic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently. The term systemic sclerosis indicates that “sclerosis” (hardening) may occur in the internal systems of the body.

I’m sure you caught “kidneys” in that definition.

Well, what about symptoms?  No one seems to know what causes Scleroderma, but maybe there’s more information about the symptoms. WebMD at http://www.webmd.com/arthritis/understanding-scleroderma-symptoms had this one covered.

  • Swelling, stiffness, or pain in the fingers, toes, hands, feet, or face
  • Puffy skin
  • Discolored skin
  • Fingers and toes that react strongly to cold — they may look white and hurt. This is called Raynaud’s phenomenon.
  • Red spots on the fingers, palms, face, lips, or tongue. These are called telangiectasias. They happen when tiny blood vessels are widened.
  • Ulcers or sores on fingertips, knuckles, or elbows
  • Fatigue or feeling tired
  • Shortness of breath, caused by heart or lung damage
  • Problems digesting food — for example, heartburn, trouble swallowing, or food moving slower than usual through your system

Some of the latter symptoms may be the same as those for CKD, but this does not automatically mean you have CKD…or Scleroderma for that chartmatter.  See your doctor to be tested for each if you have CKD and think you’re developing Scleroderma or vice-versa.

Now there’s another question.  What is the testing for Scleroderma? Our old friend Lab Tests Online at https://labtestsonline.org/understanding/conditions/scleroderma/start/3 offered a complex answer to this question.  Below are the usual tests, but there are groups of others to determine which organs are affected, the severity of the disease, the type of Scleroderma, etc.

A battery of tests is performed to detect the presence or absence of autoantibodies that are generally associated with the diagnosis of scleroderma. They include:

So now we know what Scleroderma is, how it can be determined if you have it, what type you have if you do, and how it may be connected to CKD. By the way, to date, there is no way of preventing this disease.

Now the biggie.  What can you do about it? Time to check with MedicineNet at http://www.medicinenet.com/scleroderma/page4.htm#what_is_the_treatment_for_scleroderma

Treatment of scleroderma is directed toward the individual features affecting different areas of the body.

Aggressive treatments of elevations in blood pressure have been extremely important in preventing kidney failure. Blood pressure medications, particularly the angiotensin converting enzyme (ACE) inhibitor class of drugs, such as lisinopril, are frequently used.

scleroderma-systemic-sclerosis_3See what I mean about choosing the medication that prevents the most harm rather than one that does the most good?

While research is ongoing, there are support groups for Scleroderma patients just as there are for CKD patients, although I wasn’t able to find one for sufferers of both diseases. The Scleroderma Foundation at http://www.scleroderma.org/site/PageServer?pagename=chapter_locator has an interactive map with addresses of in person support groups. Online, there’s Dailystrenth.org at http://www.dailystrength.org/c/Scleroderma/support-group, as well as a Facebook page at https://www.facebook.com/pages/Scleroderma-Support-Group/498039106944584. Of course there are others, but these might be the best places to start if you’re looking for support groups.

I am sitting here writing my blog in the midst of a post vacation cold that’s taking three weeks to run its course. Ah, the joys of having a compromised immune system (She wrote sarcastically.). After writing this blog, I’m feeling very lucky that this is all I’m dealing with as a result of my CKD.IMG_1398

Until next week,

Keep living your life!

A Cautionary Tale 

Memorial DayToday is Memorial Day here in the U.S. It’s a celebration of our fallen warriors, the ones who fought for us so we wouldn’t have to fight for ourselves… and it began as a celebration of freed slaves honoring those who fought for their freedom way back in 1865. As Time.com at http://time.com/3894406/who-invented-memorial-day/ phrases it:

On May 1, 1865, freed slaves gathered in Charleston, South Carolina to commemorate the death of Union soldiers and the end of the American Civil War. Three years later, General John Logan issued a special order that May 30, 1868 be observed as Decoration Day, the first Memorial Day.

I married a retired military man. Memorial Day has had more meaning for me in the last eight years than ever before in my life.  It’s been a revelation, as our wedding invitation stated:

The Retired Lieutenant Colonel

Paul Arthur Garwood

and

The Former Wannabe Hippie4wedding

Gail Rae

Invite you to our wedding reception

Thank you again to all those who gave their lives so I wouldn’t have to.

Being a bit dramatic here, I also sort of saved my own life last week by saving my kidneys from further damage.  I know, I know. There’s no comparison, but it sure is a good way to get into today’s topic.

I wrote about dreaming about my bladder last week.  Well, I decided I needed to take that dream a bit more seriously. Off I went to my local pharmacy for an over the counter (OTC) urinary tract infection (UTI) kit.

I chose the Azo Brand because it is

the same urinary tract infection test used in many doctor’s offices, to determine if the bacteria that cause a UTI are present. {The description continues.} Then call your doctor with the results. The most reliable, over-the-counter UTI home test available, AZO Test Strips offer two UTI tests in one – including both Leukocyte (white blood cells) and Nitrite tests – which makes them more reliable than nitrite-only tests. (Doctors look for Leukocytes as well as Nitrites in diagnosing UTIs.)

test-strips-right_3Leukocytes are higher when you are fighting an infection. Unfortunately, that’s any infection. So what about nitrites?

When the urinary tract is infected by harmful bacteria then it leads to the development of nitrites as a byproduct. The kidneys are responsible for filtering the blood and for the elimination of unwanted waste materials from the body. However, they are incapable of filtering out the nitrites. The nitrites can however travel from the kidneys into the bladder and get stored there. They are then passed out along with the urine. Therefore the presence of nitrites in urine is generally an indication of the presence of a urinary tract infection.

Thank you for that information, Diseases List at http://diseaseslist.org/nitrites-in-urine/  Notice our kidneys are NOT at fault for once.

So far, so good.  I mean bad.  You take the test by urinating on a dipstick.  First you urinate for a second or two, then hold the dipstick under the urine stream, and then sort of mop up the excess urine.  Pay attention when you do this or it can get messy.

There were three test strips with accompanying color charts in the box.  I took all three. (Did I ever tell you about a family member who took the same OTC pregnancy test a dozen times just to be sure?  This doubt must run in the family.) You guessed it. All three were not just positive for UTI, but highly positive.

As you know, doctors don’t prescribe medication over the phone so I tried to make an appointment with my primary care doctor.  She is much sought after and had no openings that week, much less that day. She is part of a practice so I took an appointment with another doctor in the practice, one I had seen a time or two before under the same circumstances.

He had my chart in front of him.  I was wearing a medical alert bracelet. I told him three times I had Chronic Kidney Disease. In addition to ordering ciprofloxacin 250 mg. – which is safe for certain stages of CKD for certain periods of time at certain dosages – he ordered phenazopyridine 200 mg. for the pain. He kept talking about not being alarmed when it changed the color of my urine.

I didn’t feel like he’d heard a word I said.  I wasn’t too worried, because I always check with the pharmacist before taking any new medication.  She was alarmed, told me not to buy this medication, and that she would be contacting this doctor to tell him prescribing phenazopyridine for anyone with CKD was inappropriate.  This is the second time this has happened since I was diagnosed with CKD.

The National Institutes of Health warn that you tell your doctor if you’ve had kidney problems should he/she prescribe this drug.  I did… a NIHminimum of three times. This is what Drugs.com at http://www.drugs.com/mtm/phenazopyridine.html had to say about this pain reliever.

What is the most important information I should know about phenazopyridine?

You should not use phenazopyridine if you have kidney disease.

Okay, beating a dead horse here (I’m just so damned annoyed!), so let’s see if we can figure out why CKD patients should not be using this drug. Uh-oh, MedicineNet at http://www.medicinenet.com/phenazopyridine-oral/article.htm tells us

Although the exact mechanism of action is unknown, phenazopyridine is thought to provide relief of symptoms of UTIs by acting as a local anesthetic on the lining of the urinary tract.

All right, let’s try this another way then.  Why shouldn’t CKD patients take this drug? After looking at Wikipedia – even taking into account that anyone can edit these entries – I’m wondering why anyone would take it at all. It’s a form of Azo dye.

Less frequently it can cause a pigment change in the skin or eyes, to a noticeable yellowish color. This is due to a depressed excretion via the kidneys causing a buildup of the drug in the skin, and normally indicates a need to discontinue usage.

kidney functionWhat! Exits via the kidneys? Excretion can be depressed?  Nope, not for me, not for you either. Take a look at http://en.wikipedia.org/wiki/Phenazopyridine

Here’s the caution: sure we trust our doctors and those doctors they trust, but check with your pharmacist, too.

Hey, where are the weirdest places to read my CKD books entries?  We got some really weird ones, but we want to see yours.  The contest runs until the end of the month.  That’s plenty of time to snap a picture and post it. Not on FB?  Include it as a comment on the blog or email it.  You can even post it on Twitter.Digital Cover Part 2 redone - Copy

Book Cover

Until next week,

Keep living your life!DIGITAL_BOOK_THUMBNAIL

Water, Water Everywhere

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

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

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

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

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

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

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

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

The Oxford Dictionary defines catabolism (love that name) as

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

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

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

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

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

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

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

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

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

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

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

409px-Glass-of-waterRefreshed?  Okay.

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

Artesian

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

Distilled

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

Mineral

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

P.W.S.

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

Purified

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

Sparklingbottled water

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

Spring

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

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

Digital Cover Part 1

 

Book Cover

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

Until next week,

Keep living your life!

Put your Back into It for a Few Minutes

You can always tell what’s troubling me by the topic of each week’s blog.  This week it turns out I have “irritated disks.”  I kid you not.  It actually makes sense since Bear has some ruptured disks that won’t be treated until Friday and I’ve taken over his chores for a while.bad back

Let’s go back to the very beginning to explain this one. Here’s the definition I’ll be using for disk,

“Fibrocartilaginous material between spinal vertebrae which

 provides a cushion-like support against shock”

Thank you, McGraw-Hill Concise Dictionary of Modern Medicine for that.

Here we go again: a definition that needs another definition to understand the first definition.  Naturally you’d want to know what fibrocartilage is. According to Gale Encyclopedia of Medicine, it’s

“Cartilage that consists of dense fibers.”

Hang on there.  We need one more definition. I went to MedicineNet at http://www.news-medical.net/health/Cartilage-What-is-Cartilage.aspx for this definition of cartilage.

“….It is a firm tissue but is softer and much more flexible than bone.”

So we have soft, firm, flexible, dense fiber material between our spinal vertebrae.

Our what?  Vertebrae is

pic_backbone_side“a bone of the spinal column, typically consisting of a thick body, a bony arch enclosing a hole for the spinal cord, and stubby projections that connect with adjacent bones.”

 You can learn more about this by searching The Encarta Dictionary.

For the definition of spinal column (and you thought we were done with definitions), I chose to use Collins Dictionary at http://www.collinsdictionary.com/dictionary/english/spinal-column. There I found this definition:

“A series of contiguous or interconnecting bony or cartilaginous segments that surround and protect the spinal cord.”

I used to tell my children when they were little and my back hurt that the stuff between my vertebrae that acts as a cushion wasn’t cushioning right. Simple, direct, and to the point. Apparently I’m on the verge of that again. And I WILL stop it before it gets any worse.

How, you ask?  My chiropractor suggested ice for twenty minutes, then take it off for an hour and repeat… and repeat… and repeat.  With Chronic Kidney Disease, I need the daily exercise to keep my organs – all of them – strong, especially since CKD can eventually affect your other organs.  It’s our not-quite-filtered blood that feeds these organs, so we need to keep them healthy in as many ways as we can.

The icing is helping, but I have re-discovered my inability to do nothing for twenty minutes at a time.

So far, I’ve made sure to wear the dental device that helps my mandible return to normal placement after a night of wearing the Mandibular Advancement Device that treats my sleep iPadapnea.  I’ve also used the twenty minute to peruse Twitter, email, and Facebook for kidney information via iPad.  I’ve even done my banking online in this same twenty minutes.

As you can see, every minute of my time is important to me.  That’s why I was so glad to find new information that every minute you exercise counts.  Obviously with my back sort-of- injury (I don’t consider it an injury unless I can’t walk!), I’ve had to limit my exercise.

That’s the bane of my existence anyway… not the limiting, but the exercise. I usually ride five or six miles on the stationary bike or do a two mile walking tape with weights and stretch bands. I have to admit, I do it only because I have to.  I’d rather read or write anytime.

Although, I love my Sunday night exercise: the blues dance lesson my daughter, Abby Wegerski, and her partner provide at The Blooze Bar.  If you haven’t been there yet and you’re local, why not?  It’s downright fun!

blues dancersBack to every minute of exercise counts (Hurray!) This is the first paragraph of the news article about this study published on September 13 of this year.  You can tell right away why I like it.

“A new study suggests something encouraging for busy people: Every minute of movement counts toward the 150 minutes of moderate-intensity physical activity we’re all supposed to be getting each week. University of Utah researchers found that each minute spent engaging in some kind of moderate to vigorous physical activity was associated with lower BMI and lower weight.”

I have to admit I don’t break down that 150 minutes each week into daily totals when I think about exercise and it’s overwhelming.  Break it down and it’s only a little less than 22 minutes a day. Hey, that’s MY 22 minutes a day.

So what do they mean by “moderate-intensity physical exercise”?  I specifically looked at other than what we’d already consider exercise which can be incorporated into your everyday activities.

I park a little further away from my destination than I need to whenever I drive somewhere.  If I’m not able to walk too well that day due to plantar fasciitis, I’ll chop vegetables or mix my from scratch pancake batter by hand.  If my hands hurt from arthritis or neuropathy that day, I’ll play with Bella – the cancer free wonder dog.IMAG0269 (1)

Wait a minute, these are all suggestions made in the study. And better yet, they count toward my 150 minutes of exercise a week.  I like the idea that you don’t have to chuck the whole idea of exercise if you don’t have time to go to the gym, or climb your friendly, local mountain, or ride a bike 10 miles.

I know it’s hard to believe, so I’d suggest you take a look at the article about the study yourself at http://www.nbcnews.com/health/diet-fitness/every-minute-physical-activity-really-does-count-new-study-shows-f8C11042850 I especially like that my five minutes of rigorous dancing or riding the bike or exercising to those walking tapes count.  Well, my five minutes usually turns into more since I figure I’ve started so I might as well finish my twenty minutes or thirty minutes of exercise that day.

Book wise, I’m hard at work on The Book of Blogs, but have no finish date yet since I really don’t want to do any work when my beloved brother and sister-in-law are here for the two weeks I convinced them to stay.  Just one more week, just one more week. I’m like a child awaiting Santa!

Book CoverWhat Is It And How Did I Get It? Early Stage Chronic Kidney Disease is alive and well.  There just may be a European book signing tour in the spring for this book.  We’re contemplating Germany, Amsterdam, and London.  Readers, please let me know if you’re from these countries.

Until next week,

Keep living your life!

From Deficiency to Support

happy birthdayI was invited to their joint birthday celebration at The Hotel Valley Ho in downtown Scottsdale by one of my daughters and her good friend. That’s a place I’ve wanted to see since it has some historical value. It was nice, but what was nicer was sitting next to a young friend who happens to be a ball player. baseball player

We both ordered vegetarian dishes. (Their asparagus with lemon zest was very tasty.) He knows I have Chronic Kidney Disease and started talking about my renal diet… and the limitation of five ounces of protein per day. “Don’t you worry about protein deficiency?” he asked with alarm.

And that got me to thinking. According to The Centers for Disease Control and Prevention at http://www.cdc.gov/nutrition/everyone/basics/protein.html, as a woman above the age of 19 and all the way up to beyond the age of 70, I need 46 grams of protein a day.

Well, how many grams are in an ounce? I went directly to AskNumbers.com at http://www.asknumbers.com/OuncesToGramsConversion.aspx for the answer.  While I’m not innumerate (lacking mathematical ability), I don’t have the patience for long, involved mathematical formulations. That’s where I found both a convenient ounce to gram conversion calculator and a conversion chart.

According to the site,

“5 Ounces = 141.7476155 Grams.”

That’s way more than the 46 grams of protein required by a woman my age. So what was my friend concerned about?

Men in the same age range need 56 grams of protein as I saw on the CDC site mentioned above. That’s still only 1.9753418664 Ounces. This wasn’t making any sense to me.

Book Cover

I went right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition of protein:

      “Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes, and antibodies.”

proteinI decided it wasn’t as important to know what they were as it was to know what they do.

I found the definition for hormones in my book:

                               “Gland produced chemicals that trigger tissues to do whatever their particular job is.”

Got it!  Sort of like a catalyst to get those tissues working.

I went to Dictionary.com at http://dictionary.reference.com/browse/enzyme for the medical definition of enzyme:

“Any of numerous proteins or conjugated proteins produced by living organisms and functioning as specialized catalysts for biochemical reactions.”

There’s that word ‘catalyst’ again.

Well, what about antibodies?  Using the same source, I found this:

                                                “A protein substance produced in the blood or tissues in response to a specific antigen, such as a bacterium or a toxin,

                                                    that destroys or weakens bacteria and neutralizes organic poisons, thus forming the basis of immunity. “

Lots of definitions here, but the important part is that they all explain how important protein intake is. I think my friend’s error was not in worrying about protein deficiency, but in getting the math confused.  I thank him for his concern nonetheless.

I think that’s as far as we can go with my friend’s concern, but I think I’ll address vegetarian protein sources before I leave the topic since we’re all pretty much aware of meat protein sources (although a few of those are on this chart, too). Check with your doctor to see if these are on your renal diet.

protein sources

 

Moving right along…some readers have asked for online support groups that are not on Facebook since they – these particular readers – aren’t. I’ve also included telephone and face to face support groups since I know some of you receive the blog when someone with a computer prints it out to give to you. Please remember these are not recommendations.  Some I know and are comfortable with, others are new to me.

My first suggestion – always my first suggestion – is DaVita.com at http://forums.davita.com/activity.php.  This is the same wonderful group that has brought CKD education into the community via SlowItDown and also offers CKD classes at their facilities throughout the world.

Lori Hartwell’s Renal Support Network offers periodic patient meetings (Go to http://www.rsnhope.org/meetingssupport-group/ to check availability and to register.) and online support at all times at http://www.kidneyspace.com/

American Association of Kidney Patients (AAKP) offers a listing of support groups by state at https://www.aakp.org/community/support-groups.html. Not all states are listed, including Arizona. These are in person meetings.

The National Kidney Foundation (NKF) has peer matching telephone support. You will need to be interviewed first.  You can find more information at http://www.kidney.org/patients/peers. You can also call 855-653-7337 (855-NKF-PEER) or email nkfpeers@kidney.org to participate.peerslogo

WebMD has the Kidney Disorders Community at http://exchanges.webmd.com/kidney-disorders-exchange.

Drugs.com at http://www.drugs.com/answers/support-group/chronic-kidney-disease/ offers a forum type support group in which you ask a question and answers are offered.  This is not real time, but may prove valuable.

For my Australian readers, you can join a Kidney Club by emailing matty.hempstalk@kidney.org.au or calling 0404 177 748.  There’s more information at http://www.kidney.org.au/ForPatients/KidneyClubs/tabid/615/Default.aspx

There are even Meetup Groups for CKD patients.  Take a look at http://chronic-kidney-disease-ckd.meetup.com/.  Presently, there are two in the United States and one in Australia, but they are open to starting more.  Rephrase: Meetup is open to you starting one in your area.

The more I researched, the more I realized that each state, and even each city, in the U.S. has their own groups.  I gather it’s the same in other countries.  If none of these is what you’re looking for, I’d suggest an online search for CKD support groups in your area.support

There are also blogs about CKD… and you thought mine was the only one.  Again, I’m not recommending any of these, simply informing you they exist:

From Mexico – http://mychronickidneydisease.blogspot.com/

Well this is surprising.  Despite researching several times, I couldn’t find any other blogs from a patient’s perspective that are still in existence.  I have not included the blogs on the support groups I listed above. Perhaps you know of some others?

It’s been a heck of a week.  Thank you for your good wishes for my dog.  Sweet Ms. Bella has her stitches removed and then sees the oncologist on Wednesday. She is a delicious being!IMAG0093

Now we also need to deal with other being’s physical conditions.  It seems I’m the healthiest one I know, even with the CKD. Hmmm, wonder if it has to do with our age group.

Until next week,

Keep living your life!

 

 

 

 

 

Facebook and CKD

Victorian clockIt’s been a slow weekend with me really wondering if I were sick or just fatigued.  Fatigued won, so here I am back on track – just a little slower.  I love it when things work out the way I want them to, even if it’s an almost the way I want them to.

I’m lucky.  I have plenty of support here from Bear, the daughters and the almost sons-in-law, and the neighbors.  But many people don’t have others to talk to, much less do for them.  That’s why I’ll be writing about online support groups today.

The blog has a major presence on Facebook.  That started with Aaron Milton’s invitation to join P2P, (Peer To Peer) – Support for The Chronically Ill and Friends & Family several years ago.

This is a closed group of 6,198 members with invitation by email. As with most closed groups, the idea is for the members to be able to freely discuss whatever troubles them.  I’ve also noticed lots of support for other than illness issues here… and loads of sharing happinesses.Book Cover

Although I do not have a transplant, shortly after What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published, Rex and Linda Maus asked me to post this weekly blog on The Transplant Community Outreach’s page under the heading KIDNEY MATTERS.

I remember trying to dissuade them from this idea since I only knew about early stage, but they were adamant… and I’m still posting the blog there. This is a public support page with 5,633 members.  I’ve received a number of comments indicating that all stages of CKD patients are welcome.TCO

Then there’s The Renal Patient Support Group (RPSG) Facebook & BlogSpot, another closed group, with 5,305 members. I find this group extremely interactive concerning rides, requests for new information, and information about local treatment centers that you won’t find elsewhere. Their Shahid Muhammed has added a link to this blog on their page.

people talkingChronic Kidney Disease, End Stage Renal Failure is a smaller (71 members) closed group.  It is quite homey and inviting. When I go there, I feel like I’m visiting my neighbor.  That doesn’t mean it’s not worthwhile, though.  Sometimes you need that homey feel to understand what you’re reading. Betheny Whipple does a fine job of welcoming the members.

Kidney Disease, Diet Ideas, and Help 1 with 7,611 members is another closed group.  You can usually like a closed group to join or inbox the administrator.  This is how they describe the group:

“This is a closed, private group run by genuine Kidney patients for people with Kidney Disease including Dialysis to Transplant also for Carers to be able to offer and receive their support and knowledge in complete privacy from your friends on Facebook, to cover all aspects including discussing openly and sharing ideas on how each of our members is coping , how it affects us in day to day living, medications, side effects also their Diets , Drinks and lifestyle in accordance to our individual requirements and to also share ideas and recipes for CKD.
ALWAYS SEEK MEDICAL ADVICE BEFORE TRYING ANYTHING NEW. “

All the Facebook support groups remind you they are not doctors.  It is important for you to remember that so you check with your nephrologist before trying anything new.  Better safe than sorry.cadesus

Notice, too, that most support groups welcome family, friends, caregivers, and others somehow involved with the kidney disease patient.  The groups usually do not discriminate, but welcome all who are interested.

One of the newer groups is Kris Osborne’s Women’s Renal Failure Support Group, a closed group with 579 members. There is a free give and take about (surprise!) specifically women’s issues.  While I’m post-menopausal myself, I find I especially enjoy the younger women’s baby-shots-5posts about whether and if they can become pregnant, the hints and advice they give each other, and their generous support along this difficult journey for CKD sufferers. (Must be the wanna-grandmother in me rooting them along.)

Larry W. Green’s People of Color Renal, Kidney, Dialysis, and Transplant Support  is not restricted to people of color, although there are many posts that deal specifically with this group of particularly at risk for CKD people. It is a closed group with 207 members.  I think he nails the problem with reaching minorities in his description:1399816_10151944012192488_153026929_o

“People of Color Renal, Kidney, Dialysis and Transplant Support Group is for sharing information on people who are close to renal failure, dialysis or on dialysis or who have had a kidney transplant in the hopes of educating and offering support. Renal failure is the most prevalent among the minority communities but they are the least informed with options of dealing with this epidemic. This group is just not for minorities only but for all concerned with End Stage Renal Disease.”

By the way, the key word in all these support groups is ‘sharing.’

There are many other groups I post in because I feel they are so worthwhile in their efforts to educate CKD sufferers by sharing information AND by allowing them to vent, question, rant, and – of course – providing an opportunity for their members to support each other.sad face

Some of the others are: GM Kidney Information Network, Kidney/Renal Failure Support Group Durban, Kidney disease isn’t for sissies, Kidney Disease is Not a Joke Group, Kidney Disease in Saudi Arabia, Kidneys-R-Us (Not an organ selling site.  This is illegal in the U.S.), World Kidney Network, UK Kidney Support, National Kidney Foundation, Canadian Kidney Connection, and The Bhutan Kidney Foundation.

I know I’ve left out some really good support sites, but I’ll plead lack of space.  Some of the foreign sites are excellent and it’s fun to see how they deal with CKD differently than we do in the U.S.  Well, maybe my sense of fun is different from yours, but I enjoy it.

I haven’t included any addresses because all you need to do is go to Facebook, and cut and paste the group name in the search bar.  Ready, set, go!

Wait! I do want to end on a personal note of congratulations.  Friday night was the August birthday dinner for my sweet husband – Bear, my youngest daughter – Abby, and our wonderful almost son-in-law, Sean.  There were three different kinds of goodies, including ice cream cupcakes, a confetti cake (that I baked) and a Black Forest Cake.  Guess who didn’t have any of these.firworks

Until next week,

Keep living your life!

A Foggy Day… in Your Brain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Just Breathe

I was in Culver City, California, at a Landmark two day class this past weekend, so this blog was written before I left.  During these weekends, there’s very little free time which means I would have had to spend all Monday morning writing the blog… with a laptop that’s died at least three times already.

Rather than take that chance, I wrote this late Thursday night, since I flew to California on Friday and wouldn’t return until Wednesday. There were relatives to see there and sight-seeing, too.  Sony has a studio with sound stages there (first called Columbia Studio) and, as a recently officially retired actor, I found that too enticing to pass up. There’s a lot more to the studio’s story, but it doesn’t belong in a blog about CKD – unfortunately for me.NIHMS233212.html

Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart above is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t means the other effects should be ignored.

In order to combat these problems, to say nothing of the rare risk of death due to not breathing, I wear something called a mandibular advancement device (MAD).  I know it sounds like my writing, but I did not make up that acronym.  Honest! The picture is very similar to the one I wear nightly. (I am not promoting that particular brand; it was just the best picture I could find.)mad

I didn’t want a Continuous Positive Airway Pressure machine  or CPAP, as it is commonly called, because I don’t like the idea of being tethered to anything – the same reason I am doing everything in my power NOT to get to the point when I need dialysis.

I didn’t want surgery because of the drugs involved.  I’m down to 48% kidney function, so I’d rather keep anything I haven’t checked previously out of my body. Last time I had surgery, before the operation, I asked for and was given a list of the drugs to be used.  I checked each with my nephrologist, but then – without advance warning – different drugs were used during surgery.

There’s a little more than meets the eye to keeping your oral (mouth) airways open at night. I love that play on words.  Back to serious:  the picture below shows how the MAD forces your airway open by advancing your lower jaw or mandibular.  A really nice by product is that you don’t snore anymore, either.

A dentist who is a sleep apnea specialist needs to monitor your progress.  When I first started, I was having so many episodes of sleep apnea (which means you stop breathing) that it was dangerous.  And here I’d thought I was just a noisy sleeper.

This specialty dentist advanced the metal bars holding the top and bottom of the device together so that my lower jaw was moved further and further forward while I slept and my airway opened more and more. I also used the same rubber bands people who wear braces obstructionuse. I use them to keep my mouth pretty much closed.

While I am out of the danger range, I am still having those episodes  of apnea so I keep driving from my home to Tempe (between an hour and an hour and a half each way depending on the traffic) to have the device checked and adjusted every few months. This specialty dentist, the only one in the Valley of the Sun, then loans me a machine to measure the extent of my sleep apnea and the effectiveness of my MAD.

But that’s not all.  Since the mandibular is forced forward – good to open the airways, not so good for the muscles in the jaw – I also wear a retainer about half an hour after I remove, polish, and rinse the MAD.  This retainer stays in my mouth for about 15 minutes, but I need to physically push the mandibular back in place so that my lower teeth can meet the retainer on my upper teeth.  Result: I can’t talk. (I think Bear really likes this part of the treatment for my Obstructive Sleep Apnea.) Then this has to be brushed and dried, too.

In addition, I use a little machine that looks just like a jewelry cleaning machine in which I place a denture cleaning tablet once a week because there usually is some kind of buildup on the MAD.

This is quite a bit of work (adding to my daily routine of exercise, wearing hand braces at night, putting drops in my poor little macular degeneration suffering eyes… can I get a little sympathy here?), but well worth it.  I am not only saving my life, I’m saving my kidneys… and my heart… and my liver, according to the latest medical discoveries.

The down side?  Well, if I open my mouth while I’m wearing the MAD, I drool. I can hear Bear clapping now: more  silence from me. I could also risk stretching my jaw muscles if I don’t use the morning retainer.  Not using the retainer could result in a small, but permanent, shifting of my teeth as well.  And there is pain when I first take out the MAD.  Maybe I should write discomfort or minimal pain instead. muscles

If you snore, get checked for sleep apnea.  Many people just don’t know they have it and, YES, it could be life threatening.

Did you see today’s (meaning Monday) Wall Street Journal.  In ‘Encore,’ Laura Landro wrote about SlowItDown and me.  I haven’t read it yet, but will be sure to post a link to it on WhatHowEarlyCKD and SlowItDown’s Facebook pages and Twitter accounts.  If you haven’t liked either of the Facebook pages, why not take a look at each of them and do it now?

Again, please be leery of Campusbookrentals.com and Chegg.com which are both attempting to rent What Is It And How Did I Get It? Early Stage Chronic  Kidney Disease for short periods at prices that are higher (for one of them, double) than that of the book.   Make use of the KindleMatchBook deep discount instead.

I’d discovered a place marker as well as the book cover on Amazon’s French site so I wrote them an email requesting they remove the place marker.  They removed both.  I think I’d better brush up on my French.

Until next week,

Keep living your life!Book Cover

SlowItDown More

KwanzaaThe best way I can describe the way I think of this holiday season – Thanksgiving, Chanukah, Christmas, and Kwanzaa – is that it’s a reminder to share, to give, to donate… and that’s why this is another blog about SlowItDown.  Not all who read this blog have Chronic Kidney Disease (thank goodness), but most of you know someone who does, or know someone who knows someone who does, and so forth.  Some of you are doctors, work with doctors, or are patients of doctors. Share SlowItDown with them. Let’s see how many people we can educate about their own disease.  It gave me solace to learn just what was going on in my body and what I could do to help myself.  My hope is it will offer them the same.Christmas Tree KidneySteps.com is another kidney site.  Vicki Hulett, one of the authors of The Five Step Survival Guide for Diabetes, High Blood Pressure, and Dialysis, a kidney transplantee, and the administrator of the site was glad to help spread the word when I first instituted the SlowItDown project and offered to print an article about it if I’d like to write one.  Oh boy, did I! And here it is: I am part of an at risk community for Chronic Kidney Disease.  I’m over 60, not Black, not Hispanic, not Native American, just over 60. That’s enough to make me part of an at risk community. To make matters worse, 59% of the United States’ population is at risk for Chronic Kidney Disease… whether they are part of a high risk community or not. MenorahWhen I was first diagnosed, I was confused.  What is this?  How did I get this disease? I’d never heard of it before.  I contacted relatives near and far; no one had ever heard of this in the family before. I was scared, too.  Did this mean I was going to die? I couldn’t understand what my nephrologist was saying.  Nothing was getting in so I couldn’t respond to his, “Do you have any questions?” I went home and kept this a secret while I quietly mourned what I thought was my impending death. But not for long.  I’m a non-fiction writer and that means I can research.  So I did. ThanksgivingThen I wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. You can see where I got the title.  I started doing book signings and book talks, then radio shows and I finally figured out a Facebook page and a Twitter account for the book would help disseminate the information. But it just wasn’t enough to get the information I’d needed out to the people who needed it now: the newly diagnosed. That’s when I began SlowItDown, a project to bring free Chronic Kidney Disease education by trained instructors to any community that needs it.  We were invited to the Salt River Pima – Maricopa’s Annual Men and Women’s Gathering and will be in the community once a month for ten months offering this education.  Both the Chinese Christian Community and the Burmese Community have asked us to present. I’d like to see SlowItDown in every community that needs it.  Let us know via our Facebook page which communities you’d like to see us help and I’ll contact them. If you know me at all, you know I didn’t stop there.  After the Salt River Pima – Maricopa Indian Community invited us to teach there, SlowItDown presented at their 4th Annual Men and Women’s Gathering.  There were members of several different tribes there who took the education back to their communities.  I donated books to a member of each of the tribes so they would have a reference right there in their hands when they went home again.Salt River Great Seal I’m still not done.  Right after the new year, there will be an ‘Encore’ article about SlowItDown in The Wall Street Journal.  More about that when I have the specific date.  I’ll be interviewed at onlinewithandrea, a web radio show, about SlowItDown in the early part of next year too.  Again, more about that when I have the specific date. The National Kidney Foundation calls upon me every so often to give interviews or write articles and, each time, SlowItDown is right there in the middle of it. kidney-book-coverSlowItDown is not only the name of the project; it’s the central idea behind the project… and the book. I urge you to take a minute and consider who knows someone, who knows someone else, who knows a third person who just might need to know that CKD is not necessarily a death sentence and that they can slow it down.  That’s the person who needs SlowItDown… and that person just might want to bring SlowItDown to their community. There’s still time (Look at me!  I’m a late night television commercial!!!) to gift someone who could use it with What Is It And How Did I Get It? Early Stage Chronic Kidney Disease for the holidays.  Keep in mind that if you have EVER ordered the print copy of the book on Amazon.com, you get the digital copy at 70% off.  Who knows?  The book may persuade the specific community you’ve got in mind to go ahead and call me (623-266-2609) or contact me via the Facebook page or Twitter to arrange for those KidneySmart classes – taught by DaVita’s own Annette Folmer – to be brought to their community by SlowItDown. On the home front, I’m happy to report that no one has bronchitis, a viral infection, or the flu, and that Bear is healing nicely and can even try walking in just four more days.  Oh, happy day!  What makes this even better is that Lara and her sweetheart hosted everyone for Thanksgiving and that Sean and Kelly will be hosting the whole family for Christmas.  All I hosted this holiday season was a small neighborhood Chanukah party.  I was having such a good time at that I almost forgot about the latkes.  Good friends, good neighbors, wonderful family, and we almost have our health back.  Now I ask you, what more do we need? Until next week, Keep living your life!Book Cover

Easy, Peasy Cryosurgery

This is the feel good blog, the one to reassure you about a medical procedure.  I have a friend who worries that my blogs scare people… and maybe they do, but they’re meant to be informational – just informational.  Except this one.  This one is definitely meant to be reassuring.happy-woman

With all the medical messes, we’ve had lately (she writes as her chest burns and a headache creeps in) the solution to this one was the safest and quickest. The procedure to correct it is non-invasive, doesn’t enter the body in any way, and – therefore – is totally safe for Chronic Kidney Disease patients.

I know, I know, slow down.  Okay, from the beginning:

Skin cancer is responsible for almost half the cancer cases. According to the American Cancer Society’s “Skin Cancer Facts,” it is expected there will be 76,600 cases of melanoma this year alone. Melanoma, the most dangerous of the skin cancers, has made its unwelcome appearance in my family, so every year – well, it’ll be every six months after this episode – I submit to a full body scan by Dr. Christle J. Layton of Affiliated Dermatology right here in Glendale, Arizona. I say submit because I’m an old fashioned prude these days.  However, she does manage to put me at ease each time.

During this last exam, Dr. Layton found something on my forehead… but it wasn’t cancerous, just precancerous.  That, of course, was enough to get me researching.  Here’s where I insert the usual disclaimer: I am not a doctor, folks, just someone with CKD who doesn’t want to make her kidneys function even less effectively because she unwittingly had some medical procedure she shouldn’t have.

IMG_4813What Dr. Layton found is called actinic keratosis.  This is also called solar keratosis and senile keratosis.  I immediately latched on to the last name for this kind of precancer.  According to http://www.healthy-skincare.com/senile-keratosis.html, “Senile keratosis is essentially a form of solar or actinic keratosis. However, the difference is that the senile form of this skin condition specifically refers to the elderly. Generally, this form of keratoses appears in individuals who are older than 50.”  That’s the second time in one week this 66 year old has been referred to as elderly.  Oh right, don’t get side tracked.

Then I checked solar keratosis and found the following at http://solar-keratosis.com/, an Australian site. “Solar Keratosis (Actinic keratosis) is a common premalignant skin lesion seen on areas of the body that have been exposed to sun. Premalignant means that the lesions have the potential to become skin cancer.”

So, solar, senile and actinic keratosis are the same precancerous condition.  One thing that disturbed me about the information is that while I am light skinned-  and so – prone to this type of precancer, it was on my forehead.  Those of you who know me also know that I always have curls tumbling down across my forehead, including the affected area.  This means it wasn’t exposed to the sun and I avoid the sun at all costs anyway.  This IS Arizona.

I was puzzled and dug further. MedicineNet at http://www.medicinenet.com/actinic_keratosis/page2.htm must have been listening to me.  This is what I found there: new headshot

When patients are diagnosed with this condition, they often say, “But I never go out in the sun!” The explanation is that it takes many years or even decades for these keratoses to develop. Typically, the predisposing sun exposure may have occurred many years ago. Short periods of sun exposure do not generally either produce AKs or transform them into skin cancers.

I do remember being talked into (I didn’t develop this strong personality until later in life) using aluminum foil to make a sun reflector so I could tan as a teen ager.  I was so fair that it never worked.  Come to think of it, no one really knew about the ultraviolet rays of the sun/skin cancer connection at that time.  Did they?

Ready to find out about this painless, quick, non-kidney threatening treatment?  It was cryosurgery, which I’ve discussed before.  The simplest definition is the one I found at WebMD: “Cryosurgery is the process of destroying a skin cancer (lesion) by freezing it with liquid nitrogen. Liquid nitrogen is applied to the lesion using a cotton applicator stick or an aerosol spray.” You can find more information about this at http://www.webmd.com/cancer/cryosurgery-for-nonmelanoma-skin-cancer.

When Dr. Layton was done spraying the area, I asked her what was next.  She started telling me I need to clean the area with soap and water, then pat it dry.  I thought that was an odd answer and asked again.  We both realized at the same time that there was no ‘next’ for this procedure.  It was done.cryosurgery

Sometimes, there’s a blister after the procedure.  If so, I was to use an antibiotic ointment and perhaps a band-aid over the area until the blister dries. I may have a scar.  Good, maybe it’ll balance out all the scars on my arms (carpal tunnel surgery, a crazy very big dog we had, bad attempts at food prep and ironing, etc.).  It may also remain white.  Who cares?  It is under my curls, as I’ve mentioned.

I never experienced the burning sensation or pain that others might in the first 24 hours.  It, well, spidey tingled. Whoops!  I think I’m aging myself again.

I am relieved and gratified that this was so simple.  I’m also gratified that European sales of the book are doing so well.  Please spread the word that if you have EVER bought a print copy of the book on Amazon, you can now buy the digital edition for only $2.99 instead of the regular $9.95.Book Cover

I have been sick for ever, or maybe it’s more like 10 days, and have had to cancel attending numerous events (like SlowItDown’s kidney education class on the Salt River Pima – Maricopa Indian Community,  some Landmark events and classes,  appointments with friends).  The world didn’t end.  Lesson learned: rest when you need to; the world will be waiting when you get back.  Thank you to our children and neighbors for coming to our rescue when we just couldn’t do for ourselves, to the EMTs when Bear’s fever was out of control, and to those who kept my spirit up via texts and Facebook posts.  It got us through!

Has anyone ever read an advice column called Dear Annie?

Until next week,

Keep living your life!

Testing…One…Two…Three…

runnersOn your mark, get set, test!  Or not.  It all depends upon which news articles you’ve been reading lately.  You’d think it was a no brainer to automatically test for Chronic Kidney Disease when 60% of the U.S. population is at risk and more than 28,000 of those that do have the disease don’t know they have it. That’s what you’d think, but not necessarily what your doctors think.

Then there’s the matter of so what?  That’s what I call reporting test results, but not acting upon them.  According to The Clinical Journal of the American Society of Nephrology (CJASN) at http://cjasn.asnjournals.org/content/early/2013/10/31/CJN.02490213.short?rss=1,

“Automated eGFR laboratory reporting improved documentation of CKD diagnoses but had no effect on nephrology consultation. These findings suggest that to advance CKD care, further strategies are needed to ensure appropriate follow-up evaluation to confirm and effectively evaluate CKD.”sad face

That was more than a year ago.  So much has happened since then.

Yet, MedlinePlus, A service of the U.S. National Library of MedicineNational Institutes of Health at  http://www.nlm.nih.gov/medlineplus/news/fullstory_141748.html posted an article from the American College of Physicians (ACP) which firmly suggests NOT routinely testing symptom free patients who have no risk factors while, at the same time, suggesting different methods for treating different symptoms  at different stages.  For the only time I can remember, I ended up sitting in my office chair staring at my computer screen scratching my head in confusion after reading an article on this site.  How can you treat what you don’t know you have since you haven’t been tested for it? To make matters worse, most of the early stage of CKD ARE symptom free. In this October, 2013, report, I found the following statement:

“There is no evidence that evaluated the benefits of screening for stage 1-3 chronic kidney disease,” ACP president Dr. Molly Cooke, said in a news release issued by the group. “The potential harms of all the screening tests — false positives, disease labeling, and unnecessary treatment and associated adverse effects — outweigh the benefits.”GFR

Wait a minute here, folks.  I was diagnosed at stage 3 and have spent the last five years battling to stay in stage 3.  Don’t you think I’d rather be battling to stay in stage 1?  Or even stage 2?  You’ve got it backwards, Dr. Cooke.  I’d rather deal with the labeling, the chance of a false positive, etc. and have caught this disease earlier so it never got to stage 3. I like living more than I do being label free, ma’am.

Now for the other side of the coin.  That same month, the American Society of Nephrologists (ASN) – which, come to think of it, is the first group whose articles I started reading when I considered writing a weekly blog – came out in support of routine testing calling CKD “a silent killer.” This is more to my liking.  They talked about the chance to slow down, or perhaps even stop,  the  progression of the illness once you know you have it  and the fact that the procedure is not only lifesaving, but low  cost. (I’ve already spoken with some readers about new headshotthis and they thought the cost might have been prohibitive.) You can read the article for yourself at http://newswise.com/articles/asn-emphasizes-need-for-early-detection-of-kidney-disease-a-silent-killer-in-the-u-s.

The National Kidney Foundation spokesman, Dr. Leslie Spry, had some interesting things to say about CKD in his Sept. 2013 blog in the Huffington Post:

“We, as a society, need to take kidney disease — which kills more Americans than breast cancer and prostate cancer combined — seriously, or the human and financial costs may become unbearable.”

He was referring to both the approximately $60 billion dollars the government spends on treating CKD annually and the need for those over 60 to be routinely tested.  The address for this particular blog of his is http://www.huffingtonpost.com/leslie-spry-md-facp/kidney-disease_b_3860079.htmlGlomerulus-Nephron 300 dpi jpg

According to Dr. Spry, too many people think of CKD as just something that happens as you grow older.  I know I didn’t.  Actually, I hadn’t yet realized I was growing older.  It was happening, but I wasn’t paying any attention.  It was the CKD – something I’d never heard of until I was diagnosed – that drove that fact home to me.

The whole purpose of the book, the blog, the Facebook page, and the tweets for both What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and SlowItDown is to inform people about testing for CKD, and then becoming educated about the disease.  Read the book, look at the Facebook pages and grab some of those daily tweets.  You don’t need to be shocked out of your socks at age 60 with the news that you have some disease you never heard of that may threaten your life like someone very close to me was. (Uh, so close we live in the same skin.)Book Cover

Talking about the book, Amazon.com has come up with a deal I really like as a way of getting the word about CKD out to those who need it even more quickly. When you order a print copy of the book from Amazon, you can also buy the digital edition for $2.99. You get two for not much more than the price of one.  And don’t forget that you can share your Kindle books.  Amazon has been a pleasure to deal with from day one.

Oh, look at the date!  Tomorrow evening – from 5:30 to 8:30 – SlowItDown will be participating in the Health Fair in the Salt River Pima – Maricopa Indian Community.  It is open to the public, so feel free to meet us there.

For those of you who have texted, called, and messaged about Bear’s surgery, thank you again and again.  While he still cannot bear weight on the foot – even with his glow green in dark non-weight bearing cast – he is getting so good with the knee scooter that one of our almost sons-in-law was able to take him over to Rockler’s (the wood working shop where Bear works part time) and then to dine at Claim Jumper’s on Saturday.  While the excursion wiped out his energy for the next couple of days, Bear was a happy man.  Thank you, Sean.  Lara and Alex, your coming over so often has kept Dad’s spirits up  more than you know.Bear's foot

Until next week,

Keep living your life!

The Eyes Have It.

All these health issues for my family members and me!  Things do seem to happen in threes.  First there was Bear’s back (oh, why don’t I write about that next week?), then Nima’s gall bladder (She is doing very well, thanks) , and now my macular conception… I mean macular deception… no, I don’t, I mean macular degeneration.  I have a lot of resistance to this as you can see.  That probably has a lot to do with my love of reading and the fact that I’m a writer.  I’ll deal with it.

Anyway, I have gotten lots of questions about what this is.  It’s an eye problem.  The macula (macular means about the macula) is the layer of tissue on the back of the inside of your eyeball in the middle of your retina. The National Institute of Health’s Senior Health has a succinct definition of the disease at: http://nihseniorhealth.gov/agerelatedmaculardegeneration/agerelatedmaculardegenerationdefined/01.html macula

“Age-related macular degeneration, also known as AMD, is an eye disease that affects the macula, a part of the retina. The retina sends light from the eye to the brain, and the macula allows you to see fine detail.”

No one seems to know why it happens, but it does get worse as you get older.  There are two kinds.  Lucky me, I have the dry or non-neovascular or nonexudative kind.  Nonvascular means NOT new blood vessels, which is the wet or vascular kind of macular degeneration.  As for exudative, the medical dictionary at: http://medical-dictionary.thefreedictionary.com/exudation, explains that exudation means:

“the escape of fluid, cells, and cellular debris from blood vessels and their deposition in or on the tissues, usually as the result of inflammation.”

Again, I have the nonexudative kind. So wet macular degeneration – the kind I do not have – consists of fluid escaping from the eye ball to form new blood vessels. I’m going to let Natural Products That Make a Difference handle this one since their explanation is both clear and succinct:

“Wet Macular Degeneration (also called neovascular or exudative) refers to a condition where the macula degenerates (just as in Dry Macular Degeneration), but as a result of hemorrhaging blood vessels in the eye or the abnormal growth of blood vessels in the eye. In Wet Macular Degeneration, abnormal blood vessel growth is triggered in the choriocapillaries (behind the retina) resulting in the leakage of blood and protein. The resulting fluid leakage and overgrowth of blood vessels can quickly damage the macula and its rod and cone cells, resulting in severe loss of central vision. Hemorrhaging of the blood vessels around the retina or macula can cause vision loss virtually overnight, much the same way Diabetic Retinopathy does. Even if the vessels do not hemorrhage, the growth of blood vessels on the macula or the retina can cause severe central vision loss (though this may not be as sudden).”

isYou can read more at: http://www.maculardegenerationtreatment.net/types_of_macular_degeneration.htm.

This may be corrected by surgery, something that is not available to dry macular degeneration sufferers.  That’s where the sarcastic “Lucky me” came in above.  However, you could also lose your vision overnight with this kind, so maybe I am lucky that I have the dry kind.

Dry macular degeneration is caused by drusen or yellow deposits made up of lipids (oh no, a fatty protein!) Of course, there has to be two kinds of these as well, hard and soft. The hard doesn’t seem to be problematic, or at least not for a long time, but the soft?  This one is a good indication you have AMD.  The soft drusen tend to cluster together and, with no distinct borders, it makes sense that would affect your vision.  Diagnosing does require your ophthalmologist perform a dilated eye examination. Now remember, no one knows what causes AMD so drusen are not the source, simply an indication of higher risk.eye exam

No surgery fix for me since I have dry macular degeneration, but according to the second Age Related Eye Disease Study or AREDS2 study (see http://www.nei.nih.gov/areds2/) , certain vitamins and minerals might slow down the rate of degeneration by 25%.  I don’t know about you, but I’ll take even a 25% chance.  These are my eyes!

My ophthalmologist had a formula made just for this purpose and wanted me to take it.  Of course he did.  He’s m yophthalmologist and my eyes are his first priority.  But, while I value them greatly, I made it clear my kidneys are my first priority.  This is where the Chronic Kidney Disease element comes into today’s blog.Book Cover

I’d had kidney stones, so I couldn’t take the vitamin C in the formula. There’s no kidney related reason not to take vitamin A, but it is included for the purpose of avoiding cataracts. I’ve already had cataract surgery so it wouldn’t do me any good. Same for vitamin E.

Zinc was in the formula, but this metal  – which is an essential trace element – contains cadmium which may cause kidney failure.  Goodbye zinc. Copper, another metal and essential trace element, was in the formula because zinc supplements can be the cause of copper deficiency. One problem. Copper can cause kidney damage if you take large quantities or take it over a long period of time.  Can’t take that.

And then there was Omega 3 Fish Oil, but I already take that to reduce the progress of my chronic kidney disease and in larger quantities than suggested by the ARED2 study. The antioxidants (inhibits the negative effects of oxidation) lutein and zeaxanthin are also in the formula and I am taking them separately.  I looked them up on WebMD before I made my decision.  This is what I found there:

Eye-related benefits: Lutein and zeaxanthin protect the eyes from harmful high-energy light waves, such as some ultraviolet rays in sunlight. Studies suggest that high levels of lutein and zeaxathin in eye tissue are associated with better vision, especially in dim light or where glare is a problem.”

You can read more about them at: http://www.webmd.com/eye-health/lutein-zeaxanthin-vision.

md imageThere were many more ingredients in this ophthalmologist’s formula and I’m beginning to understand that each ophthalmologist may slightly alter the formula he has made for his dry macular degeneration patients. So much information! The picture shows just about how I see. My problem seems to be more pronounced in the left eye and it’s not this bad yet.  That could take up to 10 years… or less, much less.

Have you taken a look at SlowItDown’s Facebook page yet?  Keep those suggestions coming, folks.

As for the book, I am gratified that so many people have made it a point to tell me how much it has helped them… or their patients.

Until next week,

Keep living your life!

It Isn’t What I Thought It Would Be

I had my blog for today mentally written before I even sat down at the computer tonight.  I met with Dr. Jennifer Weil, of The Phoenix Epidemiology and Clinical Research Branch (PECRB) of the National Institutes of Health (NIH) Research Clinic on Saturday. Although a research nephrologist (specialist in the kidneys and high blood pressure), she is highly involved in the kind of Chronic Kidney Disease education and prevention I am interested in providing.  She’s so involved that she’s actually written material that had wonderfully apt analogies of her own devising. Those were what I had planned to write about today.    NIH

On Saturday, Dr. Weil gave me a DVD of her informational slide show and permission to use any or all of it for my own devices… or so we thought.  Once I sat down to write the blog and choose the slides I was going to use, I discovered she’d given me a DVD of another project: Looking Out for Our Health  – Slowing Down Kidney Disease, aimed at the Native American community with Native American patients telling their stories. Most of the people in the DVD were from the Salt River and the Gila River Indian Communities – the ones I’ve been trying to contact.

Originally, my Landmark Education Self Expression and Leadership project had been to bring CKD education and prevention classes to the local tribes. In my endeavor to do so, I learned from the Indian Health Services’ (IHS) Dr. Charles Rhodes, the Director of their Diabetes Prevention Program, that each tribe has been granted a percentage of  a $150,000 grant for diabetes education and prevention.  Because not all the tribes have decided to use the money for educational purposes (some use it for treatment), he is still helping me 601px-Indian_Health_Service_Logo.svglocate the tribes that may need SlowItDown’s free, sustainable program.

When I spoke with Dr. Andrew Narva, Director of The National Kidney Disease Education Program at the Division Of Kidney, Urologic, & Hematologic Diseases of at The National Institute of Diabetes and Digestive and Kidney Diseases which is part of the NIH and  U.S. Department of Health and Human Services  (This is the same man who asked me to call him Andy????), he explained that I may have missed the existence of many of the CKD education programs because they were under the auspices of the Diabetes Prevention and Education programs on the reservations.

Well, then, it looks like SlowItDown (the name of my Landmark project) would have to change its target communities.  Back to Dr. Weil and her slides.  She was very open to the idea of SlowItDown and began helping to pinpoint possible communities right away.  That’s when she showed me the slide show I thought I was going to write about tonight. But, of course, I can’t do that until I reach her.  The upside of that is we may have the topic for next week’s blog.

So now what?  I know, I’ll write about the Chronic Kidney Disease support groups I’ve found on Facebook.  First, I will warn you that certain groups and people (Not included in my list) are not real.  Well, I suppose they are real people but they are posing as other people in order to make themselves more acceptable to their perceived buyers so they can sell Chinese herbal medicine.sad face

There is quite a bit wrong with that.  I find the obvious deceit insulting.  Herbs themselves may be very effective, but as CKD patients we may need to take less of them since our kidneys cannot filter them out as well as non-CKD patients’ kidneys can.  In addition, what may be healthful for non-CKD patients is not necessarily healthful for CKD patients. Just ask your nutritionist about eating the traditional healthy diet.  So many of those foods are really hard on the kidneys. It’s the same principle here.

Now, the groups.  Please remember you may be happy with one group, but not another.  You have to find your own comfort level.  Also, some of the groups are closed and you need to seek permission to join.  Contact the administrators about that.  The best part of these groups is that they are all truly patients and usually run disclaimers or statements letting you know they are not doctors and you need to contact your nephrologist before you follow any of their advice.

Ready? Then keep in mind that these are in no particular order and all welcome CKD patients.

Kidney Health Liberated

Kidney Disease and Diet Ideas and Help 1

Show Your Scars Tour

Kidney Failure

Kidney Disease Is Not a Jokepeople talking

Chronic Kidney Disease “CKD” Awareness

The Transplant Community Outreach (I write ‘Kidney Matters’ for them at their request)

Renal  Patient Support Group

Transplant Friends

Chronic Kidney Disease

P2P (Peer To Peer)

But You Don’t Look Sick

TCO Women’s Health

Kidney Disease Shout Board

Support for Those Affected by Kidney Disease

What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (like how I snuck that in at the end of the list?)

Some of these groups seem to be for other kinds of patients, but I’ve found each of them welcoming.  Some seem ‘dead,’ but pick up in a short time.   Others that are going strong as I write may not be around by the time you get around to reading the blog.  It’s just reassuring to know there are other CKD patients out there to share you angst, glories, numbers, and experiences with.  Try each group to find a few you like.

As far as the book, sales are steady both here and in Europe.  The funny thing is I’m surprised each time I get a check because I forgot that’s why I started this blog. While the book was the first step to sharing the information I have, this blog has become the primary sharing place.  Of course, if you’d like to buy some books to share with those that don’t have any information and no computer Amazon.com and B&N.com are the places to go.  If you want the book signed, just contact me at: myckdexperience@gmail.com.

We’re very late today because it’s my turn to be the caregiver in the family. It takes a lot of time, but not so much that I would completely miss blogging.

Until next week,The Table

Keep living your life!

Coffee, The Elixir of The Gods (Or Did I Just Make That Up?)

With all that’s going on in my life and in the world, I awoke today thinking, “Coffee, today’s blog is going to be about coffee!”  First thing I did was make the coffee (my turn today) and then pop back into bed with Bear and check Facebook.

And there it was, right in front of me.  And now, here it is, right in front of you. Mark Rosen shared MedicalPk’s coffee post (http://www.medicopk.com/health-benefits/some-surprising-health-benefits-of-coffee/).  Mark originated The Kidney Disease Ideas and Help Page I follow on Facebook and MedicalPk is a medical blog for students.Some-surprising-health-benefits-of-COFFEE  Look at all the benefits of coffee mentioned in this chart!  I made that a very large reproduction so you could read it. I wasn’t so sure this could all be true since I remembered the old adage, “If it sounds too good to be true, it probably is.” *Notice, the article also mentions the negatives of coffee so look at the website.

Of course, as Chronic Kidney Disease patients, we can’t run wild in our pursuit of the perfect cup of coffee and how often we can have it. It’s 16 ounces (two cups) maximum for me so I want to have the best taste I can. Coffee Masters’ Jamaican Me Crazy is my favorite.  We discovered it while choosing our wedding cake at Bakery-Wee in Glendale and immediately ordered a ten pound bag.  I sort of, maybe, kind of knew that our wedding guests were not going to drink that much coffee.  Hence, almost two months later, there it is – waiting for me – on the kitchen counter next to the coffee machine everyday.

CoffeeCupPopCatalinStockBut it’s become one of those once-in-a-while-heaven-descends treats for me. I haven’t quite figured out how it can have the “richest, sweetest essence of the darkest tropical island rum” without containing alcohol, despite what it says on the package. That’s a topic for another blog.

Going a step further in my coffee research, I found an article at http://www.medicalnewstoday.com/articles/257888.php that explains the benefits of Greek coffee and how that works.  The part that intrigued me was this:

“The endothelium is a layer of cells that lines the blood vessels, which is impacted by lifestyle habits and aging. The researchers focused on coffee because earlier research has proven that moderate coffee intake may decrease the risk of coronary heart disease, they [sic]} wondered whether it could have a positive impact on other areas of endothelial health.”

According to the article based on the findings which were published in Vascular Journal earlier this year, it did. If you look at the chart, you’ll see heart disease mentioned as one the ailments coffee may help prevent there, too.

Another article, this one from Digestive Disease Week, offered more good news about coffee:

“Coffee consumption helped protect against the autoimmune liver disease known as primary sclerosing cholangitis (PSC), a disorder of the bile ducts that causes inflammation and obstruction and that can lead to transplantation or death.”

This one is discussed on MedpageToday at: http://www.medpagetoday.com/MeetingCoverage/DDW/39292.  On the chart, liver cirrhosis is mentioned as another ailment coffee may help prevent.liver

There’s a wonderful slide show of both the merits and drawbacks of coffee consumption at: http://www.medscape.com/features/slideshow/coffee?src=ptalk#12.  I urge you to see this for yourself. On this slideshow, not only are the benefits mentioned in the chart about Parkinson’s disease, gout, cancer, diabetes, and heart disease also noted, but there are also slides about improving glucose metabolism, promoting weight loss in the overweight (obviously, you need to drink more than the two cups a day I do), lessening of the risk of developing depression, slowing the progress of Hepatitis C, benefitting dry eye syndrome, and preventing MRSA infections (those are the antibiotic resistant ones).Coffee Beans_0

Coffee does initially raise blood pressure, but it also has the potential to lower it long term… one of life’s little dichotomies. Among the other drawbacks of my favorite beverage are the obvious ones: it can contribute to anxiety, insomnia and tremors (so that’s why my mother and her father had these.  Or was it the Parkinson’s disease that seems to run in the family?) Coffee can exacerbate withdrawal symptoms and there is the potential for it increasing the risk of glaucoma.

The article I liked the best during my research is at: http://bodyodd.nbcnews.com/_news/2012/11/20/15309215-coffee-helps-you-see-the-bright-side.  It offers a detailed explanation of how dopamine is elevated by drinking coffee.  In layman’s terms, that means coffee can make you feel good.  As a non-drinker, non-smoker, I can personally attest to the fact that my two cups of coffee per day make me feel great… and not simply in terms of energy.YGCnpYEUFRtlrF00_f9frLXF_JWiNWNHS9AVZmM1PxI

Talking about coffee, yesterday the Transplant Community Outreach from Facebook invited me to a lunch gathering of people from different parts of Arizona and California. I write KIDNEY MATTERS for the group so they knew I wasn’t a transplant.  I marveled as they ate pretty much whatever they wanted.  The conversations centered on their various transplants and other diseases, but it was so definitely not a pity party.  These people realized they were on their second or third chances and were enjoying life tremendously.  Thank you for inviting me, Janet Peralta.

Kidney educators are waiting to start their kidney education classes on the local Native American reservations.  I am still waiting to get them on the reservations.  If you can think of any access at all, please let me know.  There is nothing like saving a life… even indirectly.

The book has been introduced to British Columbia via Patti Telford and Colorado’s Evans Community Army Hospital via Deanna Leclair.  Thank you both for being the cause of these new avenues for getting the information where it’s needed.  And thank you LandmarkEducation for giving me the opportunity to get this information to places I hadn’t even realized it was needed.

Until next week,The Table

Keep living your life!

Stop It Before It Starts

Memorial Day

First things first: thank you to Bear and every other veteran – living or not – for the sacrifices you made for the rest of us.  I wasn’t quite sure I believed in the military until I watched the attacks on 9/11… while my children were in the city.  Then I knew.  That day, soldiers and police officers became the most respected people in my world. It’s been close to a dozen years, but I still find myself weeping when I think of it.  If this is post traumatic stress for me, what is it like for our returning soldiers?

There is no way to slide into a blog from that so I won’t. There was a question on What Is It And How Did I Get It? Early Stage Chronic Kidney Disease‘s Facebook page ( https://www.facebook.com/WhatHowearlyCKD) about the inoculations that are suggested for those who have Chronic Kidney Disease.

Before we even get to the different kinds of inoculations, why do we need any in the first place?  According to http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837:

“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.”HBV

I have been on bed rest for several days, ever since I showed up at my primary care physician’s office for my Hepatitis-B vaccine and was told I’d have to come back for that at a later date.  I either had pneumonia or bronchitis. I didn’t know.  I thought I’d just been pushing my physical limits and needed to take some time off. Why mention that here?  Consider it proof that our immune systems become weaker with CKD.

I clearly remember (because it was only a few years ago), becoming sick for only a day at a time.   Then I noticed that maybe once a year I’d end up with the flu which had me down for about ten days.  This year, it’s been ten days with the flu, ten days with sinusitis, and now whatever this is.  You know I’ll be running to Dr. Zhao’s office for the inoculations as soon as my lungs are clear!

Now that I’ve convinced you they’re necessary, what are the inoculations?  There are three that DaVita suggests. The first, as mentioned, is Hepatitis-B. Let’s go back a little bit and define the disease. “Hepatitis B is a serious liver infection caused by the hepatitis B virus (HBV). For some people, hepatitis B infection becomes chronic, leading to liver failure, liver cancer or cirrhosis — a condition that causes permanent scarring of the liver. ” That’s what the Mayo Clinic has to say about it.  You can read more at:  http://www.mayoclinic.com/health/medical/IM02250.

A Hepatitis-B infection may lead to kidney failure. What’s worse is that some adults never exhibit the symptoms of this disease.  Your kidneys areliver already compromised, as is your immune system. To the best of my knowledge, the drugs to treat Hepatitis-B may also adversely affect the kidneys.

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

The liver performs quite a few of the metabolic functions necessary to keep you alive, much less healthy, certain of which affect the kidneys. Metabolic means the “chemical processes occurring within a living cell or organism that are necessary for the maintenance of life,”  according to www.thefreedictionary.com. If your kidneys are already compromised and then your liver is, what happens to your blood pressure and blood sugars without any kind of regulation?  I know I’m already having problems with both and don’t need any more. This much I knew.

As I researched, I discovered that the liver also converts blood ammonia – which is toxic –  into urea. Remember the kidneys turn urea into urine and that the amount of urea directly affects our kidney function.  What I didn’t know is that Hepatitis-B is one of the infections that can inflame  the glomeruli.  These are the parts of the kidneys that do the filtering.

I’m sure you’ve all heard of cirrhosis of the liver.  Guess what.  It can lead to kidney failure.  Get the vaccine!

fluI’ve spent most of the blog on the Hepatitis-B because it’s relatively new and I, for one, didn’t know much about it.  I’ve already written several blogs about the flu vaccine, so I’ll just add this tidbit from http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf, which is the website of the Southeastern Kidney Council, Inc.”

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

That statement speaks for itself.

Ah, now the third vaccination: Pneumococcal.  Sounds terrible, but it’s really just the pneumonia inoculation. MedicineNet at http://www.medicinenet.com/pneumococcal_vaccination/article.htm#who_should_consider_pneumococcal_vaccination  tells us this is,

” a method of preventing a specific type of lung infection (pneumonia) that is caused by pneumococcus bacterium. There are more than 80 different types of pneumococcus bacteria — 23 of them covered by the vaccine. The vaccine is injected into the body to stimulate the normal immune system to produce antibodies that are directed against pneumococcus bacteria.”

Naturally, the next question is why CKD patients? Dr. Joseph A. Vassalotti, Chief Medical Officer of the National Kidney Foundation and Dr. William Schaffner, President of the National Foundation for Infectious Diseases have explained it better than I ever could:

“One reason people with CKD are at greater risk for pneumococcal disease is because kidney disease can weaken the immune system and make the body more susceptible to infection.

2 Doctors and researchers have found that infections in people with CKD such as those caused by pneumococcal disease are worse and can be more serious than in people who don’t have CKD.pneunomia lungs

3 In some people, infection can cause death.”

You can read more about that at: http://www.kidney.org/atoz/content/Pneumococcal.cfm

It’s time for me to crawl back into bed.

Until next week,

Keep living your life!

Peeking At Transplantation

ringLadies and Gentlemen: welcome to the first blog by Gail Rae-Garwood (Mrs. Paul A. Garwood), formerly Gail Rae.  Thank you for all your congratulations and good wishes! I have more former names than I’d like to admit, but I’m sticking with this one, just as I’m hoping to stick with my own two kidneys for the rest of my life… or as I say to Bear “whatever time we have left.”

I am not morbid but I’m also not the blushing bride my dear cousin Steve Bernard caricatured me as.  I’m just plain realistic. And that’s why we’ll take a little peek at transplantation today.  Remember that I’m not a doctor and I didn’t want to know anything about this ever.  But it is a fact in some lives.  Sure I don’t want to have one of those lives and I’m doing everything I can to avoid it, yet….

Do you know about the TransplantCommunityOutreach page on Facebook?  They asked me to be their kidney ‘expert’ right after What Is It And How Did I Get It? Early Stage Chronic Kidney Disease                         was published.  I balked since I certainly didn’t feel like an expert and knew nothing about transplantation.  Linda and Rex Maus went back and forth with me until I understood they didn’t expect me to know everything, just to remind the transplantees what it had been like in the early stages and keep them informed about what new discoveries have been made since their own time in the early stages of chronic kidney disease.  I was comfortable doing that.

You already know that when your kidney function decreases to 10 or 15%, depending upon your nephrologist’s views, you need outside help.  By this I mean, from outside your body.  We timidly explored dialysis last week.  A word about that.  There is so much more that I’ve learned about dialysis while I was researching for that blog. If you’d also like to learn more – whether you’re at the point of needing it or not – I urge you to do more research on your own.The Table

Or, if you’re not comfortable researching, go to one of the national kidney organizations.  They will give you clear, simply stated explanations with diagrams and will list other sources. I would start with Medlineplus, a service of The National Institute of Diabetes and Digestive and Kidney Diseases at http://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&query=renal+dialysis .

I went to Medline at http://www.nlm.nih.gov/medlineplus/kidneytransplantation.html for a definition of renal (or kidney) transplant:

“A kidney transplant is an operation that places a healthy kidney in your body. The transplanted kidney takes over the work of the two kidneys that failed, so you no longer need dialysis.

During a transplant, the surgeon places the new kidney in your lower abdomen and connects the artery and vein of the new kidney to your artery and vein. Often, the new kidney will start making urine as soon as your blood starts flowing through it. But sometimes it takes a few weeks to start working.

Many transplanted kidneys come from donors who have died. Some come from a living family member. The wait for a new kidney can be long.

If you have a transplant, you must take drugs for the rest of your life, to keep your body from rejecting the new kidney.”

I find people cringe at the thought of taking drugs for that long, but think of the alternative… or lack of one.  There is quite a bit of information packed into that concise definition.

Diagrams always help me understand when the words don’t.  You’d think that wouldn’t be the case for a writer, but I like to think of myself as the exception to the rule. (It saves face when I don’t remember what some of the terms in the definition mean.)  This is the clearest, simplest diagram I could find.faq_kidney_transplantation

A couple of reminders (taken from the glossary of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease):

  1. Arteries are the vessels that carry blood from the heart.
  2. Veins are the vessels that carry blood toward the heart.

In the last decade, there has been experimentation with taking the donor kidney laparoscopically. That means using extremely small instructions which require extremely small incisions into the abdomen of the donor. I haven’t seen any articles that are negative about this and it cuts down on the recovery time for the live donor.  Since we each have two kidneys and it is possible to live with one, someone who matches may donate a kidney to you.  Otherwise, you will receive something called a cadaver kidney, meaning one which comes from someone who has just died.

Recently, according to ScienceBlog at http://scienceblog.com/56571/donors-like-giving-up-kidney-through-belly-button/ , this marvelous procedure of removing donor kidneys laparoscopically has been further improved by using only one incision in the belly button which is lost within the navel folds once it is healed. The idea is to make it more comfortable for the living donor so that more living donors can be found.

As for the person receiving the kidney, you will be on anti-rejection drugs for the rest of your life.  Your body is designed to reject foreign bodies – including organs.  You’ll also need to pay attention to exercise, diet, sleep, and stress sort of like with ckd, only this is not a life or death matter…  not a keeping your GFR up matter.

Some people choose not to take on that challenge.  It was only through Cheryl’s death that I came to realize not everyone wants to prolong their life if it means doing what they don’t feel they can.

I know, I know, here I am a newlywed (one day now, folks) and I haven’t told you a thing about the wedding or the reception.  I simply felt that, logically, a blog on transportation had to follow the one on dialysis.  Again, I haven’t told you much more than the basics so if you want more, research.  Or comment and I’ll help you find more information.

Expect to cry and laugh with me next week as I weave highlights of the wedding into kidney information.  To my European readers, thank you so much for the volume of sales there!  To my US readers, don’t forget this Kidney Walk season.  Contact your local kidney organization for info on the walk in your area.Az. Kid Walk

Until next week,

Keep living your life!

Appy Trails To You

As any of my family members will tell you, I may not be the first around here to try something that’s electronically new but I like exploring and am always delighted to find one app (application) or another that makes my life easier.  For example, I’ve written several times about KidneyDiet, the app for counting electrolytes, fluids and calories.    

In the book What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wrote about carrying a pad and pen to keep track of these.  Obviously, that was before the app was developed. Now all I need is my phone… or iPad if I have it with me.  I could always check it out on my laptop, too. The point is I’m not tied to my desktop to use the app.

Apparently, doctors have started to see the electronic light, too.  According to the August 19, 2012, NY Times, apps may become part of your prescription and – get ready – be paid for by your insurance.  I bought my KidneyDiet app this year and had intended to claim it on my taxes as a  health cost, but to have my insurance pay for it?  That’s not only interesting, it’s astounding at the moment.  Of course, any new concept is.  Here’s to seeing this become part of our medical futures!

In addition to KidneyApp, I recently read about other apps. Being pre-diabetic, I was particularly interested in the one dealing with that disease. I thought it was another keeping-track-of-what-you-eat app. According to the article I mentioned, it reads as if it’s a doctor in your phone, or iPad, or laptop, or desktop.  In other words, it does a lot more than track.

This app, called DiabetesManager, does collect information about blood sugar levels, meds (medication) and diet as we’d expect but it can do so by wirelessly linking with the patient’s glucose monitor.  One of the biggest reasons I don’t use KidneyApp consistently is that information needs to be manually entered.

I realize this is nothing more than laziness on my part but I’m human – glucose monitors are not. That also means no chance of human error in entering the information, say as in a finger slip so that the incorrect information is being entered.

I was still being amazed that such a thing could be done (remember I’m 65.  I didn’t grow up with electronics.) when I was mentally blown out of the water by this statement:

“DiabetesManager then gives advice to a patient, perhaps suggesting the best food after recording a low midday blood-sugar reading. It also uses an algorithm to analyze the medical data and send clinical recommendations to the doctor.

WellDoc  [That’s the developer of DiabetesManager] says that in a clinical trial, DiabetesManager was shown to reduce significantly the blood sugar levels in diabetes patients. “

It gets even better.  According to the company, as of August of this year, two unidentified insurance companies agreed to pay the hefty $100 per month cost of the app.  Let me get this straight – diabetics get a doc in the pocket that insurance pays for?  Sign me up!  Oh wait, I don’t have diabetes.

There are similar apps being developed for heart problems, too, as well as for physical therapy and rheumatoid arthritis.  Maybe it has to do with my age, which means a history of personal doctor visits for information – then library research – on to internet research – and learning to track by hand, that I find this incredible.  I know it’s at hand, but I keep thinking it’s the science fiction of my youth.

While the FDA has already approved DiabetesManager, it won’t be available by prescription – yes, your doctor must prescribe it – before 2013.  You can read the article at: http://www.nytimes.com/2012/08/20/technology/coming-next-doctors-prescribing-apps-to-patients.html?pagewanted=2&_r=0&seid=auto&smid=tw-nytimeshealth.

Have you submitted your entry for the two contests we’re running until Wednesday?  One is to find the most creative use for this garden tub which is in my master bathroom and will be staying there and the other is to be the first person to find the reason it’s called a garden tub when it’s in a bathroom. The first contest is creative; the second factual.  Looks like I’ve got both parts of the brain covered.

You can submit your entries as comments here, emails to myckdexperience@gmail.com, posts on the Facebook Community Page “What Is It And How Did I Get It? Early Stage Chronic Kidney Disease,” or at http://Pinterest.com  The prizes are (what else?) personally inscribed copies of the book What Is It And How Did I Get It? Early Stage Chronic Kidney Disease.  

Pinterest is new for us so it’ll take a bit of time to get that straight.  Bear with us, please.

Bear!  Talking about Bear, I wanted to let you know how very enjoyable it is to realize we’ve turned the Thanksgiving torch over to his youngest and her fiancé. It was strange at first not to be the one scurrying around to organize the dinner, but I quickly got used to it. I’m beginning to see that age has its privilege.

Here’s something to make you jealous, Sean was the organizer and called me beforehand to find out what my eating restrictions are.  You are a welcome addition to the family, Sean.  Kelly knows I can only eat potatoes if they are soaked several times before cooking (to cut down on potassium) and automatically does that before making her delicious mashed potatoes. Thank you, Kelly.  That’s just another reason I love you.

Until next week,

Keep living your life!

My Turn For A Biopsy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is exhausting writing about your own health issues!

Until next week,

Keep living your life!

Blue Monday – But Only When It Comes To Sugar

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Be Inspired

Wow!  Both Mother’s Day and Mother’s Day have slipped by.  I hope all of you had a wonderful time with your mother, father, chosen mother, chosen father, surrogate mother, surrogate father and/or whoever fills the role for you. I hope you had laughter, tears, hugs and kisses – or, at least, a really firm handshake for those who are not demonstrative.

Please be aware that if one of your biological parents has CKD, you are at higher risk for the disease. AND if you are the biological parent, so are your children.

That made me so angry when it was explained to me. Of course, I had no clue why I was angry – but it is said that anger is the flip side of sadness. I have children.

Hmmm, have you considered giving a copy of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to either your parent or your child as a late Mother’s or Father’s Day gift?  What about as a graduation gift to the aspiring medical student? Now that’s inspiration.

Wait!  I have to repeat this: Dr. Jamal Atalla is such a gentleman that he said nothing when I misspelled his name in last week’s blog.  My apologies and thank you for your kindness in not mentioning it, Jamal. I was actually meeting with Tamara Jensen from AKDHC when I realized I’d misspelled his name and stopped mid-sentence to make a mental note to mention this in the blog.

Many people choose to share a meal out to celebrate holidays.  Bear’s daughters, Lara and Kelly, and Kellly’s significant other – Sean – took us to Cracker Barrel for breakfast to celebrate.  [I noticed the bracelet part of medical alert bracelets being sold as interchangeable watch bands  at the cashier’s counter. Apparently, they are the same things.  A little too fancy for my taste, but worth checking out.] My daughters, Nima and Abby, were in New York having lunch out  with their father.

And, yes, I was able to find something on the menu that fit the renal diet I follow.  Naturally, I did get those “Are you sure?” questions from the friendly waiter when I asked there be no butter, syrup, sweetened fruit, or powdered sugar on top of my made-from-scratch French toast and just black coffee and water with lemon but no ice.  I’m used to my diet now and thoroughly enjoyed it as much as the others enjoyed their bacon, sausage, and whatever else they had. Have I inspired you to eat out safely for your CKD?

Some readers were surprised to discover that I’d seen my nutritionist not once, but twice. My nephrology center, AKDHC, includes a yearly consultation with a nutritionist.  Now that I’m older and on Medicare, I decided to see what they cover.  Surprise!  Three visits, the first year and two every year thereafter.  This is from their website. 

 

Medical Nutrition Therapy

How often is it covered?

Medicare covers medical nutrition therapy services prescribed by a doctor for people with diabetes or kidney disease. This benefit includes:

  • An initial assessment of nutrition and lifestyle assessment
  • Nutrition counseling
  • Information regarding managing lifestyle factors that affect diet
  • Follow-up visits to monitor progress managing diet

Medicare covers 3 hours of one-on-one counseling services the first year, and 2 hours each year after that. If your condition, treatment, or diagnosis changes, you may be able to get more hours of treatment with a doctor’s referral. A doctor must prescribe these services and renew their referral yearly if you need treatment into another calendar year. These services can be given by a registered dietitian or Medicare-approved nutrition professional.

This is the address at which you can find the rest of this article and others that may be of interest to you.  http://www.medicare.gov/navigation/manage-your-health/preventive-services/medical-nutrition-therapy.aspx?AspxAutoDetectCookieSupport=1  Hopefully, this has inspired you to call your nephrologist for a visit with the practice’s nutritionist.

Let’s move from using renal nutrition therapy to stave off End Stage Renal Disease to alternatives should you reach stage 5.  What if you’re among the 20% of CKDers who aren’t able to stabilize at stage 3 and need to go on to dialysis?

This article from the University of Washington caught my eye a couple of months ago. Frankly, I had trouble believing this was even possible. It just sounded too much like science fiction. After pondering and pondering, I’m now convinced it is more science than fiction. I’d be interested to hear your opinion.

Wearable artificial kidney to be tested for safety and effectiveness in collaboration with FDA

By Leila Gray and Linda Sellers

UW Health Sciences/UW Medicine and Northwest Kidney Centers

A wearable artificial kidney, designed as a new treatment for kidney failure, will be tested in Seattle. The trial will be done in collaboration with the Food and Drug Administration under a new Innovations Pathway announced Monday.

The battery-powered wearable artificial kidney in its current form weighs about 10 pounds and is worn in a belt around the waist. Dr. Victor Gura, an associate clinical professor at the David Geffen School of Medicine, University of California, Los Angeles, invented the device. His goal is to free end-stage kidney disease patients from being tethered for several hours for three or more days a week to a dialysis machine. The hope is to improve the quality of life of these patients.

Researchers will be testing a wearable device that takes over the blood-cleaning functions of the kidneys…. The Wearable Artificial Kidney is being developed by Blood Purification Technologies Inc. based in Beverly Hills, Calif..

“Quality of life issues will likely be embedded in the trial design,” Himmelfarb said. “We’ll probably be asking patients, ‘Can you move with ease? How do you feel? How does the device or the treatment affect your daily life? Can you go to work with it on or go out with your family and friends?’ We will be looking at key health outcomes as well as health economics.”

“At present, if you want to attend your cousin’s wedding in New York City, you need to check to be sure time slots are available at a center for you to get your dialysis done. You can’t just walk in,” he said. “If you live in a rural area, you probably drive a long distance every week for your dialysis sessions. A safe, effective, wearable artificial kidney would give end-stage kidney disease patients much more freedom in their lives.”

You can find the entire article at: http://www.washington.edu/news/articles/wearable-artificial-kidney-to-be-tested-for-safety-and-effectiveness-in-collaboration-with-fda

So we’ve gone from renal nutritional therapy to external artificial kidneys in just one blog.  I am so inspired to realize just how much is available to us.

Nathaniel Smalley, former East Coast Swing venue owner and now professional photographer, has initiated a Facebook page for nature and wildlife photography (https://www.facebook.com/#!/groups/NaturePhotographyWildlifePhotography/permalink/321242084623998/?notif_t=like). The professionals there (I’m one of the non-professionals) called this photograph inspiring, so look at it and realize Chronic Kidney Disease is not necessarily a death sentence. 

Until next week,

Keep living your life!

The Thing You Don’t Want to Talk About

It’s sure not the screening of “The Final Contract!”  That was last Wednesday night. You’ve probably seen it on What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Facebook page, but do you know it won a Gold REMI Award? If you get to see it, I play Anne Howard – a supporting role in this independent Christian film.  I’m Jewish, but have no problem with the film’s message of hope, family and freedom of speech.  These Five Talent Films are my payback for all the good fortune I’ve had since moving to Arizona (yes, I do remember I have CKD, but that is not my whole life).

According to Wikipedia, The Remi Award is inspired by the creative genius of the western artist Frederic Remington, famous for his paintings and sculptures of cowboy life in Texas and The West. [Well, that’s appropriate since the movie was filmed in Arizona.] The Grand Remi Statuette is presented for the top award in each major category. The Special Jury Awards are Grand Remi Nominees, they are the highest awards for creative excellence in each major category. Then the Platinum, Gold, Silver and Bronze Remi Awards are 1st, 2nd, 3rd and 4th place in each sub-category. There are ten major competition categories that can win the Remi Award; Shorts, Features, TV Productions, Student Productions, TV Commercials, Experimental, New Media (including Interactive and Websites), Music Videos, Unproduced Screenplays and Film & Video Production (which includes Documentaries of various genres). WorldFest receives a total of more than 4,500 category entries in all ten categories.

Thank you for being my cheering squad Kelly, Bear, Amy, an acting friend –Nancy Panossa, Michelle & Ed Davis, and Carleta and Gilbert who are so newly married that I don’t know their last name yet. Notice the cast of characters here is entirely different (except for Bear, but he’s my person) than that for the premiere. My person took a picture of me all gussied up – something I rarely am in our hot state. In the picture, I’m showing off my nails which were done to match my dress.  What fun!  (Can I remove the nail polish yet?  This is not in character for me!)

But enough about me, as an unnamed celebrity often says.  So, what is it you never want to talk about?  Your colonoscopy, of course. This is something readers have asked about and it’s time to deal with it, unsavory thought or not. If this is a new word for you, once you read WebMD’s description, you will realize why no one ever wants to talk about this:

Colonoscopy is a test that allows your doctor to look at the inner lining of your large intestine (rectum and colon). He or she uses a thin, flexible tube called a colonoscope to look at the colon. A colonoscopy helps find ulcers, colon polyps, tumors, and areas of inflammation or bleeding. During a colonoscopy, tissue samples can be collected (biopsy) and abnormal growths can be taken out. Colonoscopy can also be used as a screening test to check for cancer or precancerous growths in the colon or rectum (polyps).

The colonoscope is a thin, flexible tube that ranges from 48 in. (122 cm) to 72 in. (183 cm) long. A small video camera is attached to the colonoscope so that your doctor can take pictures or video of the large intestine (colon). The colonoscope can be used to look at the whole colon and the lower part of the small intestine. A test called sigmoidoscopy shows only the rectum and the lower part of the colon.

Before this test, you will need to clean out your colon (colon prep). Colon prep takes 1 to 2 days, depending on which type of prep your doctor recommends. Some preps may be taken the evening before the test. For many people, the prep for a colonoscopy is more trying than the actual test. Plan to stay home during your prep time since you will need to use the bathroom often. The colon prep causes loose, frequent stools and diarrhea so that your colon will be empty for the test. [Delightful prospect isn’t it.] The colon prep may be uncomfortable and you may feel hungry on the clear liquid diet. If you need to drink a special solution as part of your prep, be sure to have clear fruit juices or soft drinks to drink after the prep because the solution tastes salty. [You have CKD; this is not the prep you will be using.]

The National Digestive Diseases Information Clearinghouse (NDDIC) at The National Institutes of Health (NIH) says this about when to start being tested:

Routine colonoscopy to look for early signs of cancer should begin at age 50 for most people— [Don’t you just love these gifts that come with getting older?] earlier if there is a family history of colorectal cancer, a personal history of inflammatory bowel disease, or other risk factors. The doctor can advise patients about how often to get a colonoscopy.

Their material about colonoscopy is well worth looking at, but you need to remember you have CKD and so, cannot take certain substances in preparation for your colonoscopy. You cannot take the usually prescribed Fleet enemas or anything with oral sodium phosphate. Get it?  Sodium?  Phosphate?  Both bad news for CKDers.  One possible alternative is a polyethylene glycol (PEG) solution such as Miralax and (I think) Ducolax.  As usual, check with your nephrologist.

This is the link to NIH’s information on this subject: http://digestive.niddk.nih.gov/ddiseases/pubs/colonoscopy/

During my own colonoscopy last year [yay!  I’m home free for nine more years since it’s suggested the test be performed every ten years], several polyps were removed; some because they were bleeding, some because they were the larger kind that could become cancerous (adenoma). Apparently, bleeding polyps are troublesome because they can be the source of your fatigue if you already have low levels of iron as most CKDers do. At least, that’s what my nephrologist said, but I’m still tired (sleep study coming up next month).

More often than not, you are anesthetized before the procedure, both to insure you do not move which might cause a perforation and for your own comfort.  You are a medically comprised patient.  I’ll repeat that – you are a medically comprised patient.  As such, you need to be treated differently as far as anesthesia. I have to admit that the research I found was far too medical for me.  BUT two things were very clear: 1.The dosage of the anesthesia may have to be changed and 2. You must let your doctor know on your first visit that you have Chronic Kidney Disease.

I was both disgusted and fascinated by the photos my gastroenterologist sent me after the procedure.  I saw the polyps.  I saw the inside of my colon.  And I was aghast to realize it looks just like a winding slide at a water park.  Once I stopped laughing, I was able to really take a look.

That’s the end (couldn’t resist that pun) of this column.

Until next week,

Keep living your life!

Happy Post St. Patrick’s Day

There’s so much I haven’t yet shared with you, so I’ll do that before the actual blog.

If you haven’t listened to my latest (and best, to my way of thinking) guest appearance on a radio show, here’s your chance:

http://www.blogtalkradio.com/onlinewithandrea/2012/03/07/early-stage-chronic-kidney-disease.

To be honest, I’ve never been comfortable with the label “kidney expert.” I’m just unfortunate enough to be a Chronic Kidney Disease patient.  After this show, I realized how much I knew… and that only made me want to share the information even more.

I’d also forgotten all about my promise to share reviews of the book with you, so here’s another one:

  5.0 out of 5 stars         Dr Rich Snyder, DO. Nephrologist, March 3, 2012
This review is from: What Is It and How Did I Get It?: Early Stage Chronic Kidney Disease (Paperback)

This is a must read for anyone who has kidney disease. I had the privilege of reading Gail’s book and  interviewing her on the radio. For anyone with kidney disease, this is one of the best books around written by someone who has kidney disease. I recommend this book highly!!!!!!!
Dr Rich Snyder, DO is the author of What You Must Know About Kidney Disease: A Practical Guide to Using Conventional and Complementary Treatments. He is the host of the radio show Improve Your Kidney Health on the Voice America Health & Wellness Channel.

Okay, let’s get blogging! Now that you’ve eaten just about everything green you could find, make or buy, it’s time to remind yourself of how you should be eating on your renal diet.  We all make exceptions in our lives and St. Patrick’s Day is a grand excuse to make an exception to the diet.  Okay, over, done with, back to the straight and narrow. (She writes thinking lovingly of the chocolate cake with walnuts that was her St. Patrick’s Day exception even if it wasn’t green.)

This survey is from Canada, but is true to the renal diet as we Americans know it.  Take it and see what you’ve forgotten since you last saw your renal nutritionist. It’s short and a good reminder about the diet.  For example, I got so confused about the difference between healthy eating and the renal diet that I was still eating whole wheats instead of white bread.  Not good.

Test Your Knowledge on Nutrition

http://www.surveygizmo.com/s3/722719/Nutrition-Quiz

After taking the survey,  I went to The American Kidney Fund’s Pair Up site and found some other information about the renal diet that I can’t accept. You’ve got it, the line about eating whole wheat products.  Also, while stocking your fridge with already washed and cut fruits and veggies is a good idea, you’ve got to keep your restrictions in mind – for me it’s three servings – each serving size dependent upon the food – of each a day, but also a limited variety.  Avoid starfruit!!!! It is toxic to CKDers.

Limit the amount of red meat you eat, too. Or is that just for me?  I know my renal diet was adjusted for my likes and dislikes (thank you, Crystal Barrerra – my renal nutritionist) as yours should be, but I don’t know if this red meat restriction is a universal guideline.  Crystal agrees that you needn’t cut out your favorite foods, just cut down on them but I think you should cut down on them as a means to cutting them out entirely.  Why overwork those poor kidneys?  They’re already overburdened. Whoa! I’m beginning to become the renal diet foodie.

I do agree with everything else in the article and think it’s well worth a read.

Living Healthy: Myth vs. Reality

Make just a few simple changes to eat healthier

Myth:

It’s hard to eat healthy. It takes too much time and doesn’t taste good.

Reality:

A few simple changes can make a big difference in your diet.

Some tips:

  • Start your day off with breakfast.
  • Slow down when you eat.
    • You may notice that you enjoy your food more.
    • It takes a while for your stomach to recognize that it’s full. Slowing down will give you time to realize you’re full before you overeat.
  • Stock your fridge with fruits and veggies.
    • Snack on these instead of chips and crackers.
    • Take time on the weekend to clean and cut them so they’re ready to grab and go on busy weekdays.
  • Opt for low-fat or fat-free dairy products.
  • Switch to whole grain bread and pasta.
  • Choose lean meats.
    • Bake or grill them instead of frying.
    • Remove the skin from chicken or turkey.
    • Opt for fresh meats instead of processed meats like lunchmeat and hot dogs.
  • Challenge yourself to find healthy recipes.
  • Get creative with different combinations of foods and spices.
  • Stash your junk food in hard to reach places, like a high cupboard or top shelf of a pantry. When these foods are out of sight and less accessible, you’re less likely to indulge.
  • Instead of cutting out your favorite foods, limit how much you eat. Rather than eating half a pizza, stop after just one or two slices.
  • Avoid eating from large containers. Place one serving in a bowl and put the container away. This can help you keep tabs on your portions.
  • Drink plenty of water.
  • Eat only when you’re hungry.

This is the website for Pair Up’s diet suggestions: http://www.kidneyfund.org/pair-up/learn/live-healthy/

Have I mentioned that I’ll be at Chattanooga’s 21st Renal Symposium in the vendors’ area?  On the Facebook  page, I suggested people come visit if they’re in the area.  A kidney transplant receipent is meeting me as is another reader, who just happens to be my younger daughter’s friend from junior high (middle?) school.  The connections you make – or remake – when you become passionate about something are surprising. Now let’s see how well I do with the renal diet when I’m away from home.

Until next week,

A very happy Mom with her two daughters, Nima and Abby

Keep living your life!