This Former Hippy Wannabe Likes HIPAA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

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It’s the Heat AND the Humidity

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

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

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

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

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

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

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

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

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

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

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

The CDC offers the following advice to avoid heat illness:

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Good Grief!

No, Charlie Brown, grief is not good. Grief is not good at all. My big brother, Alan Peckolick, died 10 days ago. You can read about him in lots of publications and I’ll even provide the links.* But you can’t read about him as my big brother in any of these.

Nowhere do they mention how Alan used our brother Paul’s accordion for sound effects as he told us scary stories when forced to babysit. Nowhere do they mention how this non- violent boy promptly tackled his friend to wash his face in snow after he caught the friend throwing a snowball at me, his little sister. Nowhere do they mention his being told to take Paul and me to his scout meeting and his doing it, inappropriate or not.

Six and a half years is a big age difference when you’re growing up. You sort of catch up as adults. We never did. We lived in different worlds. He was a giant in the art world. I was happy raising my little girls, acting, teaching, and writing on a less than giant scale. Nevertheless, he was my brother and I made sure we kept in touch.

As Jews, we sat shiva. That is the week long period of mourning for the first degree relatives of the deceased. At their loft in Manhattan where shiva was being observed, I met many members of his social circle who were surprised Alan had a brother and sister and who asked me to tell them anecdotes about growing up with him. They praised his art world, and rightly so. I praised the big brother as a child… and then a teenager. They were charmed by the Alan that was this age; I was charmed by the Alan they knew as an adult.

But I found myself grieving. It was not unexpected. I hurt all over, nothing specific, just a general aching… or was it my heart I felt aching? Wait a minute, what was happening to my kidneys throughout this process of grief?

The day he was taken off life support, I was at my lab having the usual quarterly blood draw. Alan and Jessica Weber, his wife, were in Connecticut where they have a country house and where the catastrophic fall that landed him on life support occurred; I was in Arizona. There was nothing I could do from afar and I knew I could trust Jessica to keep me informed. I thought keeping myself to my usual schedule would help me cope.

Except for the values in the next sentence, all my tests came back as low as they could while still being in the normal range. That had never happened before. While my GFR stayed stable, my BUN was at 30 (‘normal’ range is 8-25), Bun/Creatinine Ratio 29.1 (‘normal’ range is 10-28) and my glucose was 113 (‘normal’ range is 65-99). I was underwhelmed. I figured it was my brother’s situation making my body goes haywire. I still am.

PyschCentral at https://psychcentral.com/lib/your-health-and-grief/ offers the following explanation of how grief affects our bodies:
“…. At the death the brain ‘translates’ the stress of grief into a chemical reaction in the body. The pituitary gland located at the base of the brain is stimulated to produce a hormone called adrenocorticotrophin hormone (ACTH). This reaction is a “protective” one and in essence makes the body ready to do battle. The ACTH (from the pituitary gland) then travels to the adrenal gland, a gland at the top of the kidneys, which causes a chemical reaction which ultimately produces cortisone. As the cortisone level increases it causes the production of ACTH to level off.

What happens in the case of grief where the stress continues for many months? The cycle does not operate as it should. Because the stress is continuing, the production of ACTH is continuing thus causing the adrenal gland to produce more and more cortisone. The result is an abnormally high level of cortisone circulating in the blood sometimes exceeding ten to twenty times the normal levels.

A high level of cortisone is one of the things that causes our immune system (the system that normally fights off disease carrying bacteria fungi and viruses) to falter. The high level of cortisone affects yet another gland the thalamus which manufactures the white cells of our blood. With the thalamus not functioning properly, it cannot produce white cells that are effective. Those white cells normally locate and phagocytize (eat up) the invading germs, viral particles or even pre-cancerous cells. Thus with the white cells unable to function properly the individual is 100% more susceptible to the most common germs.”

Well, what is cortisol? As I mentioned in SlowItDownCKD 2016,
“Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body.”

So our already compromised immune system is compromised even more compromised. Are we now at the mercy of our grief? Nothing that dramatic, folks.

 

We can up our vitamin D – with our nephrologist’s approval first, of course. As mentioned in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,
“Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”

We can up our NREM (non-rapid eye movement) sleep. I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for this information:
“WebMD tells us
During the deep stages of NREM sleep, the body repairs and regenerates tissues, builds bone and muscle, and appears to strengthen the immune system.”

My favorite deterrent to a further compromised immune system? Hugs. MedicalNewsToday at http://www.medicalnewstoday.com/articles/275795.phpat explains:
“Oxytocin has an anti-anxiety (anxiolytic) effect ….”

Less anxiety, less stress. That’s something that could be useful during times of grief. I didn’t have to clear this with my nephrologist, hugging is a way of life with my family and friends, and it somehow, magically, lessens the pain for a little while.

Until next week,

Keep living your life!

*The links to Alan’s obituaries:

http://www.huffingtonpost.com/entry/alan-peckolick-dead_us_5988ae58e4b0d7937388f5be
https://www.washingtonpost.com/local/obituaries/alan-peckolick-influential-designer-from-madison-avenue-to-hollywood-dies-at-76/2017/08/10/ea33134a-7dd7-11e7-9d08-b79f191668ed_story.html?utm_term=.d2b395bfa3c6

Long Term, Short, and your Heart

I received some comments about Acute Kidney Disease (AKI) in the midst of all the support after last week’s blog. It seems this is a new topic for so many of us. By us I mean Chronic Kidney Disease (CKD) patients. I know at stage 3, my nephrologist never brought this up to me.

Ah, but I remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

On the very first page of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote “…chronic is not acute. It means long term, whereas acute usually means quick onset and short duration.”

All those years of teaching English in high school and college paid off for me right there in that sentence.

I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too. But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others. (Note: Dr. Chawla et al wrote a review article in the New England Journal of Medicine in 2014.)

“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. I’m getting a little nervous here….

It makes sense, as researchers and doctors are beginning to see, that these are all connected. I’m not a doctor or a researcher, but I can understand that if you’ve had some kind of insult to your kidney, it would be more apt to develop CKD.

And the CVD risk? Let’s think of it this way. You’ve had AKI. That period of weakness in the kidneys opens them up to CKD. We already know there’s a connection between CKD and CVD. Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before. Let’s not go off the deep end here. If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic {Kidney poisoning} medications such as NSAIDS… contrast dyes, and radioactive substances. This is just so circular!

As with CKD, your hypertension and diabetes {If you have them.} need to be monitored, too. Then there’s the renal diet, especially low sodium foods. The kicker here is that no one knows if this is helpful in avoiding CKD after an AKI… it’s a ‘just in case’ kind of thing to help ward off any CKD and possible CVD from the CKD.

Has your primary care doctor recommended a daily low dose aspirin with your nephrologist’s approval? This is to protect your heart against CVD since you already have CKD which raises the risk of CVD. Now here’s where it gets confusing, the FDA has recently revoked its endorsement of such a regiment.

Let’s see what more we can find out about this dastardly triumvirate.

The National Kidney Foundation at https://www.kidney.org/atoz/content/AcuteKidneyInjury offers this information about AKI.

Acute kidney injury (AKI) is a sudden episode of kidney failure or kidney damage that happens within a few hours or a few days. AKI causes a build-up of waste products in your blood and makes it hard for your kidneys to keep the right balance of fluid in your body. AKI can also affect other organs such as the brain, heart, and lungs. Acute kidney injury is common in patients who are in the hospital, in intensive care units, and especially in older adults.

You did catch that it can affect the heart, right?

Well, what about the heart and its diseases?

This is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/heart-disease/basics/definition/con-20034056.

The term “heart disease” is often used interchangeably with the term “cardiovascular disease.”

Cardiovascular disease generally refers to conditions that involve narrowed or blocked blood vessels that can lead to a heart attack, chest pain (angina) or stroke. Other heart conditions, such as those that affect your heart’s muscle, valves or rhythm, also are considered forms of heart disease.

Many forms of heart disease can be prevented or treated with healthy lifestyle choices.

Maybe a reminder of what CKD is will help, too. WebMD at http://www.webmd.com/a-to-z-guides/tc/chronic-kidney-disease-topic-overview#1 offers this simple, comprehensive explanation.

Having chronic kidney disease means that for some time your kidneys have not been working the way they should. Your kidneys have the important job of filtering your blood. They remove waste products and extra fluid and flush them from your body as urine. When your kidneys don’t work right, wastes build up in your blood and make you sick.

Chronic kidney disease may seem to have come on suddenly. But it has been happening bit by bit for many years as a result of damage to your kidneys.

Each of your kidneys has about a million tiny filters, called nephrons. If nephrons are damaged, they stop working. For a while, healthy nephrons can take on the extra work. But if the damage continues, more and more nephrons shut down. After a certain point, the nephrons that are left cannot filter your blood well enough to keep you healthy.

My head is spinning. One could – or could not – lead to another which, in turn, could – or could not – lead to the third. There’s no strict order and there’s no way of knowing until you actually have it. My layperson’s suggestion? Take good care of your kidneys.

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!

Two Masters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

How Did It Get Political?

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

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


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

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

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

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

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

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

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


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

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

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

Advocacy
For more than 40 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

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

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

Talking about more information, there will be more about AAKP in next week’s blog.
Until next week,
Keep living your life!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“VA eKidney Clinic

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

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

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

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

 

 

 

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

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

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

Until next week,

Keep living your life!

Recreating Creatinine

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

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

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

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

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

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

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

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

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

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

Blood:

BUN – BUN stands for blood urea nitrogen.

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

Urine:

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Getting a Little Too High

You know those blood and urine tests you take periodically?  Have you ever looked at your uric acid levels? It might be worth the effort. This is from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Uric Acid levels in the blood can indicate that you’re at risk for gout, kidney stones, or kidney failure.  It’s the kidney’s job to filter uric acid from the body.  A buildup means the kidneys are not doing their job well.”

For the first time ever – and I’ve had Chronic Kidney Disease for nine years – my uric acid levels were high. Why now? What could this mean? I already know I have Chronic Kidney Disease. I haven’t had a kidney stone in nine years and was unaware of having that one until my nephrologist told me I did. Is it gout?

Time to back track. What is uric acid anyway?

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 (Hang on; I’m working on simplifying that title.), I used the Merriam Webster Dictionary at https://www.merriam-webster.com/dictionary/uric%20acid for this definition:

“URIC ACID: a white odorless and tasteless nearly insoluble acid C5H4N4O3 that is the chief nitrogenous waste present in the urine especially of lower vertebrates (as birds and reptiles), is present in small quantity in human urine, and occurs pathologically in renal calculi {A little help here: this means a concretion usually of mineral salts around organic material found especially in hollow organs or ducts} and the tophi of gout.”

Back to gout, in SlowItDownCKD 2016, I wrote a little bit about one of the causes of gout: purines in our diet.

“According to WebMD at http://www.webmd.com/arthritis/tc/diet-and-gout-topic-overview:

‘Purines (specific chemical compounds found in some foods) are broken down into uric acid. A diet rich in purines from certain sources can raise uric acid levels in the body, which sometimes leads to gout. Meat and seafood may increase your risk of gout. Dairy products may lower your risk.’

It seems to me a small list of high purine foods is appropriate here. Gout Education at http://gouteducation.org/patient/gout-treatment/diet/ offers just that. This also appears to be an extremely helpful site for those wanting to know more about gout.

“Because uric acid is formed from the breakdown of purines, high-purine foods can trigger attacks. It is strongly encouraged to avoid:

  • Beer and grain liquors
  • Red meat, lamb and pork
  • Organ meats, such as liver, kidneys and sweetbreads
  • Seafood, especially shellfish, like shrimp, lobster, mussels, anchovies and sardines”

This doesn’t work for me. Except for shrimp which I’ll have two or three times a year, I don’t eat or drink any of this food.

Grrrrrr. Back to the drawing board. Let me see if I can find other causes of high uric acid levels. The Mayo Clinic at http://www.mayoclinic.org/symptoms/high-uric-acid-level/basics/causes/sym-20050607 had some other suggestions:

“Factors that may cause a high uric acid level in your blood include:

  • Diuretic medications (water pills)
  • Drinking too much alcohol
  • Genetics (inherited tendencies)
  • Hypothyroidism(underactive thyroid)
  • Immune-suppressing drugs
  • Niacin, or vitamin B-3
  • Obesity
  • Psoriasis
  • Purine-rich diet — liver, game meat, anchovies, sardines, gravy, dried beans and peas, mushrooms, and other foods
  • Renal insufficiency — inability of the kidneys to filter waste
  • Tumor lysis syndrome — a rapid release of cells into the blood caused by certain cancers or by chemotherapy for those cancers

Also, you may be monitored for high uric acid levels when undergoing chemotherapy or radiation treatment for cancer.”

As far as I know, I don’t have an inherited tendency toward high uric acid levels. Nor do I have hypothyroidism, take immune-suppressing drugs, niacin, or vitamin B-3. We already know that I don’t drink alcohol or eat purine rich foods, and have CKD. I’ve never been treated for cancer, so what’s left?

Hmmm, I do take a diuretic, am obese, and have psoriasis. Wait a minute. I thought diuretics helped you reduce the amount of water and salt in your body. Now they may cause high uric acid? How? Drugs.com at https://www.drugs.com/health-guide/gout.html helped me out here:

“The kidneys do not excrete enough uric acid. This can be caused by kidney disease, starvation and alcohol use, especially binge drinking. This also can occur in people taking medications called diuretics (such as hydrochlorothiazide or furosemide).” Time to speak with my doctor about this prescription, I think.

My psoriasis is so latent that I often forget I have it. However, Arthritis.org at http://www.arthritis.org/about-arthritis/types/psoriatic-arthritis/articles/psoriatic-arthritis-increases-gout-risk.php tells us:

“In gout, uric acid builds up in the joints and tissue around the joints – often the big toe – and forms needle-like crystals, which can cause sudden episodes of intense pain and swelling. If left untreated, gout can become chronic and lead to joint damage. In psoriasis and psoriatic arthritis, uric acid is thought to be a byproduct of rapid skin cell turnover and systemic inflammation.”

That also explains what gout is, which I’d neglected to do. Something kept nagging at my memory (oh, to have a clear memory without the nagging for a change.) Got it. It was in SlowItDown 2016:

“Ah, we know Chronic Kidney Disease is an inflammatory disease. Now we know that arthritis is, too. Being a purist over here, I wanted to check on psoriasis to see if falls into this category, too. Oh my! According to a Position Statement from the American Academy of Dermatologists and AAD Association:

‘Psoriasis is a chronic inflammatory, multi-system disease associated with considerable morbidity and co-morbid conditions.’

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

I’m beginning to see the pattern here. Well, what about the weight? I discovered this quote on The Arthritis Foundation’s Gout Blog at http://blog.arthritis.org/gout/weight-gout-risk/ :

“’Higher weight is associated with higher uric acid levels in the blood, which therefore increases gout risk,’ says Tuhina Neogi, MD, PhD, associate professor of medicine at Boston University School of Medicine.”

That strong connection between inflammation and weight leaves me speechless. It seems so transparent, yet I somehow manage to forget it repeatedly. Ugh!

Book news: In honor of my first born’s birthday, my miracle (I was considered a really old first time mother back then), my sun-up-in-the-sky (That’s the translation of her Tibetan name), all my kidney books will be reduced in price by 20%. as of May 6th. Go to Amazon.com and/or B&N.com and then thank Nima for the present.

Until next week,

Keep living your life.

So That’s How It’s Decided

SlowItDownCKD’s being honored as one of the best kidney disease blogs for 2016 has had some interesting results.  The first was the health and food writer’s guest blog about hydration for Chronic Kidney Disease on March 6th. Then it was the guest blog by the Social Security Administration’s Outreach Director. This week, it’s a telephone interview with Dr. Michael J. Germain, a nephrologist from Massachusetts, about some of the suggested guidelines in the upcoming KDIGO for 2016.

Got it:  backtrack. Let’s start with KDIGO. This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states, “KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.” Anyone up for visiting their offices? What an excuse to go to Belgium!

Okay, now we know what the organization is and what it does, but why Dr. Germain? I asked the same question. Although he is not on the KDIGO panel of doctors who decide what the next year’s development and implementation will be, he is well versed with the topic having published or having been part of the writing for an overwhelming number of articles in such esteemed journals as the American Journal of Kidney Disease, Kidney International, and The Clinical Journal of the American Society of Nephrology, as well as contributing to textbooks, … and he could simplify the medicalese in the guidelines to simple English for this lay person.

If you think I remind you quite often that I’m not a doctor, you should read my emails to our liaison. State I’m not a doctor, repeat, state I’m not a doctor, repeat. She had the good graces to laugh at my insecurities.

The latest guideline updates have not been released yet, so both the good doctor (over 40 years as a nephrologist) and I (CKD patient and awareness advocate for a decade) were working off the draft that was released last August.

Dr. Germain also made it a point to ensure that I understand the guidelines are based upon expert opinion, not evidence. That made sense to me since he is not only a patient seeing nephrologist, but also a research nephrologist – to which his numerous publications will attest. With me being a lay person, he “had a lot of ‘splaining to do.” I had to admire his passion when discussing the vitamin D guidelines.

In the draft guidelines, it was suggested that hypercalcemia be avoided. I know; it’s a new word. We already know that hyper is a prefix meaning over or too much; think excessive in this case. Calcemia looks sort of like calcium. Good thinking because, according to Healthline at http://www.healthline.com/health/hypercalcemia:“Hypercalcemia is a condition in which you have too high a concentration of calcium in your blood. Calcium performs important functions, such as helping keep your bones healthy. However, too much of it can cause problems….”

This excerpt from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains how calcium works with vitamin D and phosphorous.

“The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use. Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy. Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together. Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.”

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 offers us more information.

“The parathyroid glands are located in the neck, near or attached to the back side of the thyroid gland. Parathyroid hormone controls calcium, phosphorus, and vitamin D levels in the blood and bone. Release of PTH is controlled by the level of calcium in the blood. Low blood calcium levels cause increased PTH to be released, while high blood calcium levels block PTH release. …  Thanks to MedLine Plus at http://www.nlm.nih.gov/medlineplus/ency/article/003690.htm .”

As Dr. Germain explained, CKD patients break down vitamin D quickly since they have more of a catabolic enzyme, the enzyme that converts the vitamin D to an inactive form. Oh, right, catabolic means “any destructive process by which complex substances are converted by living cells into more simple compounds, with release of energy” according to Dorland’s Medical Dictionary for Health Consumers.

Here’s the problem: vitamin D can cause hypercalcemia. Dr. Germain phrased it, “In fact, the draft guideline recommends active vitamin D hormone therapy not to be routinely used in patients with CKD stage 3 or 4 due to increased risk of hypercalcemia and the lack of efficacy shown in studies.” Therefore, he urges nephrologists to wait until stage 4 or 5 to recommend vitamin D since hyperparathryoidism may lead to bone damage. But just as in any disease, it is harder to treat bone damage once it’s already there. His recommendation: Ask about your parathyroid level every three to six months and discuss the results of your tests with your nephrologist. By the way, his feeling – and obviously mine – is that preserving the kidney function is the most important job of the nephrologist and the patient.

I am eager to see the guidelines published so I can write more about them. The conclusion about vitamin D is based upon what nephrologists have seen in their practices since the last set of KDIGO guidelines were published in 2009. It will affect the way our nephrologists speak with us about our treatment, just as the other guidelines for 2016 will.

That will affect the way we self-manage. For example, I restrict my sun time to 15 minutes a day based on these findings. Take a look at how you self-manage. It should bring up a list of questions for you to ask your nephrologist at your next appointment.

You should also know the KDIGO deals with all stages of CKD including End Stage CKD and pediatric CKD.

Until next week,

Keep living your life!

Yet Another Possibility

Today we have yet another fitness plan? Weight loss plan? Health plan? Beauty plan? I don’t know what to call it since they offer so many different types of products. What’s that, you ask. It’s called Wakaya Perfection. It seems a great number of my friends and acquaintances have been involved in their health in this way recently. They, however, do not have Chronic Kidney Disease.

Let’s get this part out of the way: I want to go there. Yes, there. Wakaya is not only a company, but an island in the South Pacific and it.is.beautiful. Take a look at their website (wakayaperfection.com) so you can see for yourself… but, of course, that’s not what this blog is about.

The company has several different lines, so I decided to look at one product from each to evaluate them for CKD patients. Remember, should they not be viable options for CKD patients does not mean they’re not viable for those without CKD.

Let’s start with the weight loss products since that’s what’s on my mind lately. That would be the Bula SlimCap. This is what their website has to say about these caps:

“At Wakaya Perfection, when we say all natural, that is exactly what we mean. Our tropical flavors are:

  • Sugar Free
  • Fat Free
  • Gluten Free

And Contain:

  • NO Artificial Flavors, Ingredients or Colors
  • NO Monosodium Glutamate (MSG)
  • NO Insect or Animal Matter
  • NO Growth Hormones
  • NO Antibiotics
  • NO Herbicides or Pesticide

That sounds great and appeals to me. Wait a minute, natural is good, but what is it that’s natural? I couldn’t find an ingredient list other than this:

  • All Natural Flavors
  • Active Ingredients
  • Pink Fijian Ginger
  • Stevia Reb-A 98%
  • Quick Dissolve Blend

What makes it a quick dissolve blend? What are the all natural flavors? What are the active ingredients? Ginger is permissible for CKD patients, but how much ginger is in each cap? And as for Stevia Reb-A 98%, this is a warning I found on New Health Guide at http://www.newhealthguide.org/Stevia-Side-Effects.html: “The FDA has noted that stevia may have a negative impact on the kidneys, reproductive, cardiovascular systems or blood sugar control.” Uh-oh, they mentioned our kidneys.

Oh well, that’s only one product and maybe there’s some other source of ingredients somewhere. Hmmm, I’d want to know what’s in a product and how much of each ingredient is in it before I took it, especially with CKD on my plate.

Let’s switch to a fitness product. I stayed away from the protein shake meal replacements for the reasons I explained about such products in SlowItDownCKD 2016. This is the poignant part of that blog:

“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? Here’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.’”

Why don’t we take a look at the BulaFit Burn Capsules? Wakaya Perfection describes them as,

“A potent combination of herbs and extracts that help you manage appetite/cravings while providing sustained energy and heightened focus throughout your day. BulaFIT BURN™ is designed to help boost fat burning and provide a sense of wellbeing that reduces cravings for food and snacking.

When combined with a healthy diet and exercise, BURN capsules promote a sense of well being and energy that reduces cravings for food and snacking. BURN can also play an important role in increasing the results of ketosis and even avoiding the ‘keto flu’ that some people may experience with other ketogenic programs.”

Huh? What’s keto flu? I figured a site with the name Keto Size Me (http://ketosizeme.com/keto-flu-101-everything-need-know/) could help us out here… and they did. “The ‘keto flu’ is what we commonly call carbohydrate withdrawal symptoms. These symptoms usually occur in people who start a low carb diet that alters their hormones and causes and electrolyte imbalances.”

Wait! Electrolyte imbalances? But we work so hard with the renal diet trying to keep these within the proper range for CKD. I went back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for a little reminder about electrolytes.

“In order to fully understand the renal diet, you need to know a little something about electrolytes. There are the sodium, potassium, and phosphate you’ve been told about and also calcium, magnesium, chloride, and bicarbonate. They maintain balance in your body….Too much or too little of a certain electrolyte presents different problems.”

Nope, not me. I’m keeping my electrolytes right where they belong. This is not looking good for the Chronic Kidney Disease patient. I vote no; you, of course, have to make up your own mind.

News of a local opportunity: This year’s first Path of Wellness Screening will be Saturday, June 17th at the Indo American Cultural Center’s community hall, 2809 W. Maryland Ave., Phoenix, AZ 85017. The free screening events can process up to 200 people.  Their use of point-of-care testing devices provides blood and urine test results in a matter of minutes, which are reviewed onsite by volunteer physicians.  All screening participants are offered free enrollment in chronic disease self-management workshops.  Help is also given to connect participants with primary care resources.  The goals of PTW are to improve early identification of at-risk people, facilitate their connection to health care resources, and slow the progression of chronic diseases in order to reduce heart failure, kidney failure and the need for dialysis.

Until next week,

Keep living your life!

The Helper Asks for Help

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

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

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

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

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

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

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

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

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

Additionally, you must have one of the following:

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Getting Juiced

I have the gentlest nephrologist in the world! Well, I think so anyway. He has been cautioning me about my weight for years. Yes, there it is again: my weight. Here I was finally coming to terms with being a chubby since nothing I was doing seemed to work to lose the weight. That’s when he tossed out a bombshell.

We all know that increased weight can raise your blood pressure which, in turn, negatively affects your kidneys. I was so pleased with myself for having raised my GFR another three points on my last blood test that I didn’t understand how I could be leaking protein into my urine at the same time. Wasn’t protein in the urine simply an indication that you have Chronic Kidney Disease? Didn’t I already know that? So why was protein leaking into my urine to the tune of 252 mg. when the norm was between 15-220 mg?

I know, I know: back up a bit. Thanks for the reminder. GFR is defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease this way:

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

Oh, and just in case you’ve forgotten, this excerpt from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is a good reminder about the stages of CKD.

“Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts. The higher the stage, the worse your kidney function.

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

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

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

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

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

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

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

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

Okay, back to the connection between spilling protein into your urine (called proteinuria) and CKD. This is from the recently published SlowItDownCKD 2016:

“In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

‘High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.’”

Let’s say you don’t have pre-diabetes, but do have CKD. Does proteinuria still make it worse? Damn! It does. This explanation is from SlowItDownCKD 2015:

“The problem is that antibodies are made up of protein. Antibodies is defined by Dictionary.com at http://dictionary.reference.com/browse/antibodies as

‘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.’

Lose lots of protein into your urine and you’re losing some of your immunity. In other words, you’re open to infection.”

I guess that explains why I magically developed a UTI after years of not having any.

I have gone so far afield from what I intended to write about on this last Monday of National Kidney Month. What was that, you ask? It was my nephrologist’s strong suggestions for immediate weight loss: juicing. I was so surprised.

After all that writing about eating the raw vegetables for roughage and sticking to only three specified amount servings of each daily, this expert in his field was telling me to ignore all that and throw myself into juicing for the immediate future. But you can bet I’ll try it; no way I’m throwing nine years of keeping my kidneys healthier and healthier out the window.

I can’t tell you if it works since I only started yesterday, but I can tell you it doesn’t taste bad. I’m learning how to use this fancy, dancy blender we got three years ago that had just been sitting on the shelf. Experimenting with the consistency has caused a mess here and there, but oh well.

My first juicing experience included kale, celery, lemons, cucumbers, and ginger. I definitely need to play with my combinations. I also think I made far too much. Luckily Bear was in the house and shouted out that the machine was making that noise because I didn’t add enough water. Water? You’re supposed to add water?

I’ll keep you posted on these experiments if you’ll get yourself tested for CKD. It’s just a blood and urine test. Fair deal?

Until next week,

Keep living your life!

Women and Water (Men, too)

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

Hi There,

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

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

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

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

Staying Hydrated When You Have Chronic Kidney Disease

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

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

Recognizing The Signs

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

Steps to Take

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

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

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

 

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

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

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

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

The CDC also offers advice to avoid heat illness:

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

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

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

Until next week,

Keep living your life!

It’s Unfolding Now

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

What Are You Doing for Others?

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

mlk-do-for-others

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

Where Does It All Come From?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life.

Starting the New Year with a Miracle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Miracles Redux

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week and the New Year,

Keep living your life!

 

It’s a Miracle!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Never Too Old to Learn

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

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

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

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

Abnormal levels of cholesterol, triglyceride or both

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

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

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

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

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

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

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

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

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

cholestero

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s a pretty big ‘so.’

Until next week,

Enjoy your life!

Cleaning Out

Today I gimg_3613et to finish the final edits for my novel Portal in Time and submit it to my publisher. That means the next step is cleaning out my files and my computer. Writers accumulate an awful lot of unnecessary material when researching for a book.

That simple thought got me to thinking about another kind of cleaning out, the body kind. By the way, it seems the words cleanse and detox – short for detoxification – are being used interchangeably. Whichever term we use, are they safe for us as Chronic Kidney Disease patients?

But first – there’s always a first, isn’t there? – a warning: if you’re thinking of doing one for weight loss, don’t. According to Medicine.Net at http://www.medicinenet.com/cleansing_and_detox_diets/article.htm,

“There is no scientific evidence that “detox” (short for detoxification) or “cleanse” diets result in rapid weight loss or have any health benefits, says Heather Mangieri, RDN, LDN, a spokeswoman for the Academy of Nutrition and Dietetics and founder of NutritionCheckUp in Pittsburgh.

Indeed, the opposite may be true: One study published in 2011 in the journal Obesity found that beginning a weight-loss diet with a fast or cleanse could be counterproductive.”IMG_2980

Now wait just a minute, if they provide no ‘rapid weight loss or have any health benefits,’ why do people go to the trouble of doing them? I wrote about this just a bit in relation to brain fog in SlowItDownCKD 2015.

“…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.”

Ah, so there MAY be some benefits in relation to brain fog. What’s brain fog again? The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 (I have got to get around to shortening that title.) can help us out here.

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

FullSizeRender (3)‘…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.”

Well, what exactly is a detox?  The Free Dictionary’s medical dictionary at http://medical-dictionary.thefreedictionary.com/detoxification offers this as one of its definitions:

“A short-term health regimen involving procedures thought to remove toxins from the body, such as drinking large amounts of liquid, eating a restricted diet or fasting, taking nutritional supplements, and undergoing enemas.”

Now we get to the meat of the matter. Why do Chronic Kidney Disease patients need to be so careful about cleanses? I looked at the ingredient list of several different cleanses on Amazon.com.  (Click on the ingredient lists to make them larger so you can read them more carefully.) The first product was Super Colon Cleanse. One of the first ingredients was Psyllium Husk Powder 1 g. Uh-oh. Not good for us. As Metamucil Advisor – the manufacturer of fiber products -at http://www.metamuciladvisor.com/avoid-psyllium-and-metamucil-in-kidney-disease/ explains,

“Psyllium husk is a natural fiber that comes from the plant called Plantago Ovata. Plantago Ovata produces thousands of seeds that are coated with cleansea gel like substance that is extracted to create psyllium husk. The psyllium husk is a natural soluble fiber laxative that can be consumed to add bulk to the feces. Consuming psyllium powder will draw water to the stool making it easier to have a bowl movement. Psyllium husk is recommended to not be taken by individuals who have kidney disease because it is high in magnesium that individuals with chronic kidney disease must avoid. It is highly recommended to consult your physician before starting any product of psyllium husk to make sure it is safe with any health conditions you might have.”

dr-tobiasWell, that’s only one cleanse.  Let’s take a look at another. Dr. Tobias Colon: 14 Day Quick Cleanse is composed of herbs, no psyllium. But there’s a problem there, too.  As Chronic Kidney Disease patients we are cautioned against taking herbs, not so much because they will cause damage, but because we don’t know how much of each is safe for our kidneys.

I thought I remembered writing about this in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease  – another really long title – and decided to find that information. Here it is:FullSizeRender (2)

“While none of this is established, the following might be toxic to the kidneys -wormwood, periwinkle, sassafras (I remember drinking sassafras tea as a child.  Did that have any effect on my kidneys?) and horse chestnut just to name a few. Then there are the herbal supplements that might be harmful to CKD patients: alfalfa, aloe, bayberry, capsicum, dandelion, ginger, ginseng, licorice, rhubarb and senna.  There are others, but they seemed too esoteric to include….”

They say three is the magic number, so let’s take another look. This time as something label ‘detox.’  Baetea 14 Day Teatox is the one I chose. I think I liked the play on words: detox, teatox, a tea to detox. Lots of herbs, but then I looked at the last ingredient – Garcinia Cambogia. That rang a caution bell in my mind so I went right to a site about the side effects of this product at http://garciniacambogiatopic.com/side-effects-garcinia-cambogia/.

“Our kidneys and liver remove toxins, waste and other substances from our body.  They are the main organs designed to clean the body of detox-teaimpurities.   People who already have diseases of the kidneys or liver should not take Garcinia Cambogia because their bodies might not be able to utilize and remove the supplement effectively.”

*sigh* It looks like we’ll just have to detox the old fashioned way, with increased fiber, as much water as your nephrologist permits, and exercise. You might consider going meat and sugarless, too. Of course, it wouldn’t hurt to cut down on carbs, either. It looks like we, as Chronic Kidney Disease patients, are moving closer and closer to clean eating.

Until next week,

Keep living your life!IMG_2982

A Change is Gonna Come… Or is It?

This has been a confusing week here in the United States. You see, we have a new president-elect. I’m not going to deal with politics in today’s blog, but rather some of the fears we have concerning our health care under this new president. We are Chronic Kidney Disease patients and we have heard so many conflicting rumors.

Let’s start off with a little reassurance in this confusing time. CBS’s Lesley Stahl interviewed President-elect Donald Trump on 60 Minutes yesterday.

youtubeFor those of us who might need some background, CBS is the Columbia Broadcasting System which, of course (It is 2016, after all.), now includes videos as well as live television. You can also find them on YouTube via the specific show’s title. You can hear parts of the interview I wrote about at  https://www.youtube.com/watch?v=_XSo0cH7X1E&t=43s.

According to IMDb (which describes itself as “…the world’s most popular and authoritative source for movie, TV and celebrity content….”) 60 Minutes is:

The oldest and most-watched newsmagazine (sic) on television gets the real story on America’s most prevalent issues. CBS News correspondents contribute segments to each hour long episode…..” 60-minutes

And who is Lesley Stahl?  Bio.com at http://www.biography.com/people/lesley-stahl-20871751 tells us, “Lesley Stahl is an award-winning television journalist. She’s served as co-editor of 60 Minutes and anchored the news program 48 Hours Investigates.” 

These are not my usual sources, nor is this my usual sort of blog. However, it’s the necessary blog today.

Following is the segment of her interview with the president-elect about Obamacare which you may know as the Affordable Care Act (ACA).

“Lesley Stahl: Let me ask you about Obamacare, 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.

lesley-stahlStahl: You’re going to keep that?

Trump: Also, with the children living with their parents for an extended period, we’re gonna–

Stahl: You’re gonna keep that–

Trump: Very much try and keep that. Adds cost, but it’s very much something we’re going to try and keep.

Stahl: And there’s going to be a period if you repeal it and before you replace it, when millions of people could lose -– no?

Trump: No, we’re going to do it simultaneously. It’ll be just fine. We’re not going to have, like, a two-day period and we’re not going to have a two-year period where there’s nothing. It will be repealed and replaced. And we’ll know. And it’ll be great healthcare for much less money. So it’ll be better healthcare, much better, for less money. Not a bad combination.”

Is he definitive? Is he absolute? No, but what makes this hopeful is that during his campaign he announced, “On day one of the Trump Administration, we will ask Congress to immediately deliver a full repeal of Obamacare.” Thank you to Trump’s campaign website at https://www.donaldjtrump.com/positions/healthcare-reform  for this quote. We can see the softening of that position in the 60 Minutes interview.

IMG_2979

We have pre-existing conditions. We cannot abide with a presidency that doesn’t support healthcare which allows for this. I did say this would be a non-political blog, so no more adamancy from me… if I can help it.

What does the president-elect say about Medicare? Most 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.

Here’s what Trump had to say about Medicare in a rally in Iowa on December 11th of last year:

“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….”download

A little clarification is in order. According to their website at Medicare.gov, “Medicare is the federal health insurance program for people who are 65 or older, certain younger people with disabilities, and people with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant, sometimes called ESRD).” Then there’s Medicaid. “Medicaid is a joint federal and state program that helps with medical costs for some people with limited income and resources. Medicaid also offers benefits not normally covered by Medicare, like nursing home care and personal care services,” according to their website at Medicare.gov.

But then I found the following in a Forbes article by Janet Novack on 11/10/16 at http://www.forbes.com/sites/janetnovack/2016/11/10/will-president-trump-cut-medicare-and-social-security-as-well-as-taxes/#7115535a43f1

“… two big spending cuts Trump has endorsed— a House Republican plan to cut Medicaid spending by $500 billion over a decade by turning it into a capped “block grant” payment to the states and the “penny a year” plan, which requires that all non-defense, discretionary spending be cut 1% a forbesyear in nominal terms, saving $750 billion over a decade (without, conveniently, spelling out which programs would get chopped).”

I admit it. I am in over my head. Does this mean that while Medicare will pay if you have ESRD, you still may be on the hook for personal care services IF Trump’s capped block grant payment to states comes into being? Does it mean dialysis will be covered, but possibly not a nursing home stay necessitated by something secondary to your dialysis?

I don’t have ESRD, but Medicare (and my secondary insurance) covers my labs and nephrologist’s appointments. Let’s say the cap goes through, I have a UTI – heaven forbid – that causes me to need a nurse (I know, I’m stretching the issue.), but my income has gone way down. Will Medicaid be available?

While I meant to write a reassuring blog today, I think I’ve raised more issues to question instead. I am not a politician, nor am I politically savvy. BUT, I am a Chronic Kidney Disease patient who needs some kind of reassurance that I won’t be left without the coverage I need.stages of CKD

Hey, that’s another thing: whatever happened to Trump’s campaign promise about letting us order less expensive medications from other countries? Did I miss the update on that one?

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!

TED Doesn’t Talk to Me; But YouTube Does

After last week’s accolades for the blog about apps for kidney disease, I thought I would keep on the electronic trail and jump right over to one of the big boys: TED Talks. I was both excited and a bit apprehensive since this is new territory for me. I have heard some of my children talk about them, but never explored these talks for myself.

downloadWhat new information could I learn here? Would it be easier or harder to understand? And just what were T.E.D. Talks anyway?  Doing what I like to do best, I jumped in for a bit of research.

This is directly from the TED website at www.ted.com:

“TED is a nonpartisan nonprofit devoted to spreading ideas, usually in the form of short, powerful talks. TED began in 1984 as a conference where Technology, Entertainment and Design converged, and today covers almost all topics — from science to business to global issues — in more than 110 languages. Meanwhile, independently run TEDx events help share ideas in communities around the world.”

IMG_2982Considering what’s been going on with our insane politics this election, I thought I would check the meaning of nonpartisan just to make sure it had a meaning other than the one I’d been hearing bantered around. According to the Encarta Dictionary, it means “not belonging to, supporting, or biased in favor of a political party.” I wasn’t so sure that’s what it meant for TED, so I used the synonym function in Word; that made much more sense: impartial, unaligned, unbiased, unprejudiced, neutral, and so on.

Now that we know what TED is, let’s plunge right in and do some exploring. I searched Chronic Kidney Disease and got no hits. That’s all right; a synonym is renal disease. I’ll search that. All that came up was “Timothy Ihrig: What we can do to die well.” That’s not exactly what I was looking for.

I know, I’ll type in kidney failure. Hmmm, that didn’t work very well, either. I found two interesting talks, “Siddhartha Mukherjee: Soon we’ll cure diseases with a cell, not a pill” and “Anthony Atala: Printing a human kidney,” as well as two blogs that may have peripherally included CKD. No, these were not the talks about living with CKD that I’d hoped to find.

What other term could I search? I know, how about just-plain-kidney? I got three pages of hits which weren’t really hits at all if you were looking for living with Chronic Kidney Disease. While TED Talks cover a variety of interesting topics, I don’t think they’re CKD specific right now.  Maybe in the future…

I was a little crestfallen, but then I remembered that when I first decided to FullSizeRender (2)become a CKD Awareness Advocate and wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I made a couple of YouTubes as marketing devices. They were terrible, but did include some helpful information. You can see this for yourself at https://www.youtube.com/watch?v=8VcVYhhrixg and https://www.youtube.com/watch?v=nRsUNxv7ajA.

When you’ve picked yourself up from the floor after getting your belly laughs at my expense (cringe), start exploring YouTube for CKD information by looking at the side bar on each of my woebegone entries into the world of YouTube.  The list of videos continues and goes on and on. Yay!

FullSizeRender (3)

Of course, just as when you’re looking online – or choosing a book – or a blog to follow, you need to be careful to separate the wheat from the chaff. There are charlatans and scammers here, just as there are respected physicians and patients bravely sharing their stories.

But what is YouTube anyway? https://www.youtube.com/yt/about/tells us:

“Launched in May 2005, YouTube allows billions of people to discover, watch and share originally-created videos. YouTube provides a forum for people to youtubeconnect, inform, and inspire others across the globe and acts as a distribution platform for original content creators and advertisers large and small.

YouTube is a Google company.”

You’ll also find some YouTubes I posted that show friends, family, even me dancing either the Blues or East Coast Swing. My point? Anyone can post anything provided it does not include:

Nudity or sexual content

Violent or graphic content

Hateful content

Spam, misleading metadata, and scams

Harmful or dangerous content

Copyright (Me, here, this refers to copyrighted material.)

Threats

You can read more about these community guidelines at https://www.youtube.com/yt/policyandsafety/communityguidelines.html.

I chose one or two posts to see the quality we can find here. (Very funny, no, this is not a case of I- wouldn’t-want-to-be-a-member-of-any-club- that-lets-me-in.) I noticed one of the physicians I’d had contact with as an advocate, Dr. Robert Provenzano, posted about the causes of CKD on 2/3/09 at https://www.youtube.com/watch?v=CjZCKBOoeQo which was highly informative… but getting close to seven years old.

I wanted something more recent and found it at https://www.youtube.com/watch?v=n1_srNUJkjE. This one by Danuta Trzebinska, MD, of US San Diego Health, deals with possible symptoms of CKD and was posted last year.

But then I found YouTube about a kidney cleanses which could be harmful to already damaged kidneys. Dr. Josh Axe at https://www.youtube.com/watch?v=3AqPE-j3Eq0 was not particularly targeting CKD patients, but as a new CKD patient, how could you know that? Some of the herbs he suggests are harmful to ALREADY COMPROMISED kidneys. You need to be careful about which videos are for those with CKD and which are for those without CKD. Of course, you’re IMG_2980checking everything you see with your nephrologist before you act on it. Right? You are, aren’t you? You’ve got to protect your kidneys, so please (Let’s make that pretty please.) do.

I’m wondering what other electronic helps I could explore. We’ve looked at apps, TED Talks, and YouTube. What other electronic aids do you know about that I don’t? I’ll be more than happy to explore them for myself which means I’ll be exploring them for you, too, since they’re going to end up being the next blog.

halloweenwitchvintageimagegraphicsfairyToday is Halloween. You know those treats? Why not treat yourself by not eating them? It’s hard, but it can be done.

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!

Feeling the Pressure

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

 

The Nutrition Action Health Letter Article

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

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

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

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

This is how Amazon explains these programs:

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

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

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

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

Until next week,

Keep living your life!

Teachers Teach

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

 Gail Rae-Garwood

From NYC teacher to international health advocate

Posted August 9, 2016 by Liza Frenette

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

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

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

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

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

By now, even her heart is probably kidney shaped.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living YOUR life!

Maybe for You, But Not for Me

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

The American Kidney Fund Blog

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

Slowing Down CKD—It Can Be Done

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

No doctor had ever mentioned CKD before.

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

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

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

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

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

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

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

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

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

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

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

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

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

Until next week,

Keep living your life!

What’s Your Type?

Every Sunday night, I take a blues dance lesson taught by my daughter, Abby Wegerski, as Sustainable Blues Phoenix at Saint Nick’s Tavern and SlowItDownCKD 2015 Book Cover (76x113)stay to dance to the music of the live band – the Rockets 88s – for a while. Last week, my good buddy, Karla Lodge, organized a fund raiser. I like to support Karla in whatever she does, so I decided to push myself and go to the fundraiser (a half hour drive each way) after dancing.

To make it even more fun, Bill Weber, the creator of Avery’s World, was in from Los Angeles visiting a relative in Tucson. They drove up to Scottsdale to join us at the fundraiser.  Now that you’ve been introduced to some of the people and events in my life, forget them. Here’s the important part: as we were having dinner, my Chronic Kidney Disease Awareness Advocacy came up. Bill’s relative lit up. It turns out Avery's Worldsomeone very close to her is a transplantee. Her first question to me: What’s your blood type?

I explained I was in the moderate stages of CKD and not anywhere near transplant, but she insisted it was very important to know your blood type when you have CKD. She didn’t know why. I didn’t know why…so that’s the subject of today’s blog.

Here I am starting in the middle again. We all have a blood type.  That’s fairly common knowledge, but what exactly are blood drawblood types? We’ll go about this a bit differently by defining blood group, which is a synonym for blood type. To paraphrase a song we used to sing during the two times I went to a two week stint at summer camp on a farm, “I know because the dictionary tells me so.” In this case it’s the Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/blood%20group:

“one of the classes (as those designated A, B, AB, or O) into which individuals or their blood can be separated on the basis of the presence or absence of specific antigens in the blood —called also blood type

What is itFor those of you who are wondering, an antigen is something that’s introduced to the body and causes the body to produce antibodies (think germs). As an undergraduate in good old Hunter College of The City University of New York I learned that ‘anti’ is a prefix meaning against. ‘Gen’ is a root which means causing something to happen.  Got it. An antigen causes something to happen against something else. In this case, your red blood cells.

4I see a hand raised in the back of the room. (This does remind me of when I was teaching college out here in Arizona.) Why are there four types you ask? Good question. Anyone have the answer? I don’t either, so let’s look it up together. Look! The Smithsonian Institute sums it up in one sentence: “But why humans and apes have these blood types is still a scientific mystery.” Now I don’t feel so uninformed that I couldn’t answer the question. Anyway, you can read more at: http://www.smithsonianmag.com/science-nature/the-mystery-of-human-blood-types-86993838/#JwJKP357AyhDRy4R.99 and, yes, this is THAT Smithsonian Institute.  Where, oh where, is Bones when you need her?Bones-tv-show-f38

Did you know there are numerous other blood groups, too? Usually people don’t – unless they happen to be a member of one of them. The same link above can offer you more information about these since we’ll be sticking to the four major ones today. You should know that your blood type is inherited.

Again, why is it important to know your blood group?  Thank you to Disabled World at http://www.disabled-world.com/calculators-charts/blood-chart.php for the following chart, which demonstrates the answer.

blood-donor-match

They also offer a simple explanation of why blood groups are so important:

“Blood types are very important when a blood transfusion is necessary. In a blood transfusion, a patient must receive a blood type compatible with his or her own blood type. If the blood types are not compatible, red blood cells will clump together, making clots that can block blood vessels and cause death.

blood_test_vials_QAIf two different blood types are mixed together, the blood cells may begin to clump together in the blood vessels, causing a potentially fatal situation. Therefore, it is important that blood types be matched before blood transfusions take place. In an emergency, type O blood can be given because it is most likely to be accepted by all blood types. However, there is still a risk involved.”

As a CKD patient for the last nine years, I have never needed a blood transfusion. Come to think of it, I’ve never needed one in my almost 70 years on this planet. But that’s not to say I may not need one sometime in the future… or that you might not need one. But I’m interested in why it’s especially important to know your blood type as a moderate stage CKD patient.

I scoured 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, The Book of Blogs: Moderate Stage Chronic Kidney Disease – Part 2, and SlowItDownCKD 2015. Although there is abundant discussion of how the kidneys filter the blood, why their effectiveness in this filtering diminishes in CKD and the production of red blood cells, there is no mention of blood type in any of the books.

IMG_1398

I’m beginning to wonder if Bill’s relative meant that knowing your blood type is important in general, not especially if you have CKD. Karla, a Physician’s Assistant, was strangely quiet during this part of the discussion. I attributed that to her being pre-occupied with the fundraiser she was running… maybe that wasn’t the reason.

questionAlthough I didn’t find the answer to my question, I did run across some intriguing theories during my research. I’m not endorsing them since I know so little about them, simply offering you the information.

The Blood Type Diet at http://www.dadamo.com/ (I do remember a colleague being interested in this one about a decade ago.)

Blood Type and Your Personality at http://bodyecology.com/articles/link_blood_type_personality_diet.php

Until next week,

Keep living your life!

Bridging the Gap…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

According to Heathline.com,

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

I’m definitely barking up the wrong tree here.

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

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

Until next week,

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

A Cautionary Tale

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

renal-onlinedoctor: hello, your age and gender?

You: 69 female

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

You: 50%

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

You: Just joint and muscle pain.

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

You: HBP, neuropathy, arthritis, psoriasis

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

You:  Only hbp meds and arthritis meds.

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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.”

IMG_1398

 

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!

Deep in the Heart of Texas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The CDC offers the following advice to avoid heat illness:

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

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

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

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

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

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

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

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

Keep living your life!

Rain, Rain, Go Away…

We had a day of rain.  I know that’s not a terribly unusual statement, but this is Arizona. July and August are our rainy months; it’s only April. rainWell, we do know the climate is changing. .. and we do know it’s affecting our health. That includes the rain. How? Most often – aside from sun showers – if it’s raining, the sun isn’t shining.

So? What’s the big deal, I can almost hear you ask. You’re not out there getting your 10 to 15 sunscreenless-before-the-day-heats-up minutes of the best source of vitamin D if it’s raining, my friends. Of course, there are supplements and loads of us, like me, take them. But the gold standard? Natural sunlight.

hammock chairBear even got me a hammock chair so I could sit in the sun really, really comfortably for my 10 to 15 minutes. So comfortably, that I found him in my chair once too often when I wanted to be in it and bought him one of his own. Now we can get at least 10 to 15 minutes together each day.

According to the National Kidney Foundation at https://www.kidney.org/news/newsroom/nr/Low-Vitamin-D-Levels-Linked-to-Early-Signs-of-KD:

“Researchers found that those who were deficient in vitamin D were more than twice as likely to develop albuminuria (a type of protein in the urine) over a period of five years. Albuminuria is an early indication of kidney damage as healthy kidneys capture protein for use in the body.

‘There have been a number of studies establishing a relationship between vitamin D levels and kidney disease,’ said Thomas Manley, Director of Scientific Activities for the National Kidney Foundation. ‘This study supports that relationship and shows that a low vitamin D level increases the likelihood of developing protein in the urine, even among a general population.’”

That’s not all, folks.  I jumped back to my very first Chronic Kidney Disease book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for more information about vitamin D and our kidneys:What is it

“The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use. Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy. Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates.  The three work together. Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body. Phosphate levels can rise since this is stored in the blood and the bones as is calcium.  With CKD, it’s hard to keep the phosphate levels normal, so you may develop itchiness since the concentration of urea builds up and begins to crystallize through the skin. This is called pruritus.”sun-graphic1

All for the lack of a little sunshine! Yes, I am being dramatic and, yes, you can take supplements, but that’s like drinking juice instead of eating the whole fruit and expecting the same benefits.

IMG_1398In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I wrote the following:

“I have many more articles in front of me, so I’m going to simply list the areas in which low vitamin D is involved.

  • cardiovascular
  • Chronic Kidney Disease {The purpose of this blog, lest we forget}
  • health hip fracture risk
  • hepatitis B {Have you decided to take the inoculation against this?}
  • hypertension
  • stroke

Got how dangerous low levels of vitamin D can be?  Good.”

Uh-huh, vitamin D is a big deal… especially for us since we have CKD.  According to The National Institutes of Health at https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/,vitamin d pills

“A growing body of research suggests that vitamin D might play some role in the prevention and treatment of type 1 … and type 2 diabetes …, hypertension …, glucose intolerance…, multiple sclerosis …, and other medical conditions….”

Oh, there’s also a good possibility that vitamin D deficiency is a factor in obesity. As one who is constantly attempting to lose weight, I have one thing to say about that, “Go.sit.in.the.sun.”

I’ve been getting questions about transplantation, as in how to, what it entails, and who to contact. I don’t have the answers, but the Erma Bombeck Project does. This is from an email I received from The National Kidney Foundation of Arizona:

ErmaToday, over 100,000 Americans are waiting for a life-saving kidney transplant. The Erma Bombeck Project provides facts and reliable resources to help individuals save a life – whether by registering to be a non-living organ donor, or considering the gift of life through living donation. The project aims to narrow the gap between the number of individuals desperately waiting for a kidney and the number of kidneys available.

We invite you to visit the new, improved site www.ErmaBombeckProject.orgwhere you can find features like:

Facts on kidney donation
A free, downloadable Living Donor Guide
Living Donor Educational Videos
Links to additional resources

I urge you to take a look at the site should this interest you … and I really hope it interests you.

I finally got my print copy of SlowItDownCKD 2015 and am so pleased with the way it turned out that I am seriously considering redoing the SlowItDownCKD 2015 Book Cover (76x113)formats for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2.  Those orphan (standing all alone) blog titles at the bottom of the page always bothered me. Of course, there won’t be any difference if you purchased the digital copy of the books.

In a few days, I’ll be on my way to San Antonio – specifically Lackland Air Force Base – where my step daughter’s sweetheart will graduate from basic training. I’m eager to try out my on-the-road exercise and food ideas during the 14 plus hour drive. Bear is going too, of course, so I’ll have my staunchest supporter with me. And Lara is very respectful of my needs and has even offered to water walk with me since the hotel has a pool. This should be fun! Anyone have any sightseeing recommendations?

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)

 

IMG_1398

 

 

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!

How Sweet It Was

I’ve had an interesting turn around in my health this last week of National Kidney Month. You did know it’s still National Kidney Month, right?  National Kidney MonthYou did go get yourself tested for Chronic Kidney Disease, didn’t you? Hurry up! There’re only four more days left to National Kidney Month. You know I’m joking about this month being the time to get yourself tested, but I’m serious (unfortunately, sometimes dead serious) about getting yourself tested.

I know, I know, I’m preaching to the choir. But how many of you have told your friends, neighbors, family, and co-workers about just how simple – and important – these tests are. Let’s not let them become one of the 31 million with Chronic Kidney Disease or worse, one of those that don’t know they have it.

Excuse me while I step off my soap opera. Now, where was I? Oh, yes, the – ahem – interesting turn around in my health this month.

Okay, this is twofold. The first part is the weight. You think I’ve been having trouble keeping that in check since I started blogging four years ago, don’t you? I mean because I write about it so much. The truth is it’s been much, much longer than that.  Even way back in college when I was a size 7 for one day, I weighed more than ‘the charts’ said I should by 20 pounds or so. I looked good, I felt good, and my mom kept telling me I had ‘heavy bones,’ so I let it go.  Who knew any better back then?sorry face

What’s so bad about the extra weight you ask? You do know obesity is one of the causes of CKD, don’t you? Don’t feel bad if you didn’t. I didn’t. I just started noticing it showing up in the research in the last couple of years. That doesn’t mean it wasn’t there. It just means I never saw it if it was.

I mentioned weight in passing a few times in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This is from my first nephrologist’s report:

“The report, of course, ended with a one – two punch: I would need to exercise for at least 30 minutes a day and possibly decrease food portions, so I could lose weight (all right already!  I got it!) for better blood pressure and renal function.”

What is itBetter blood pressure and renal function? That’s when my battle with the numbers became real. And that’s when weighing and measuring food according to the renal diet allotments worked for a while… until I thought I could eye measure. So I went back to weighing and measuring… and it worked…until bomb shell number two fell in my lap: pre-diabetes.

In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

“High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.”DIGITAL_BOOK_THUMBNAIL

Let’s backtrack just a bit here. What does high blood glucose have to do with this? Well, that’s what tested to measure your A1C, which determines whether or not you have diabetes… or even pre-diabetes.

Back to The Book of Blogs: Moderate Chronic Kidney Disease, Part 2 this time, in which I decry my A1C woes:

“This time I went to WebMD for a simple explanation.  In addition to learning that pre diabetes means your glucose, while not diabetic, is higher than normal, I found this interesting statement.

Part 2When glucose builds up in the blood, it can damage the tiny blood vessels in the kidneys, heart, eyes, and nervous system.

What I learned from my primary care physician on my last visit is that the A1C is not the only measure of diabetes. Although my blood glucose readings are still in the pre-diabetes range according to the A1C, my daily readings have sometimes gone over the 126 that’s considered diabetes. My head is spinning here. No one ever mentioned that magic number to me before.

I decided to conduct a little experiment last night. We know that high blood glucose is the result of sugar, but did you know that most carbohydrates turn into sugar? Last night I ate a chocolate bar and devoured at least half a dozen Saltines. This morning, when I pricked my finger and tested the blood, the reading was 129. Damn! Someone had to be the guinea pig and I volunteered myself… but all I’d proven was that sugar and carbs raise your blood sugar pretty quickly.

Now here’s the kicker. This is from SlowItDownCKD 2015 which is presently available digitally and should be out in print later this week:

“The Brits do a masterful job of explaining this effectively.  The following is from Patient.SlowItDownCKD 2015 Book Cover (76x113)

‘A raised blood sugar (glucose) level that occurs in people with diabetes can cause a rise in the level of some chemicals within the kidney. These chemicals tend to make the glomeruli (Me here inserting my two cents: what filters the blood in your kidneys) more ‘leaky’ which then allows albumin to leak into the urine. In addition, the raised blood glucose level may cause some proteins in the glomeruli to link together. These ‘cross-linked’ proteins can trigger a localised scarring process. This scarring process in the glomeruli is called glomerulosclerosis. It usually takes several years for glomerulosclerosis to develop and it only happens in some people with diabetes.’”

My nephrologist told me to cut out sugar and carbs to lose weight. I’d already cut out sugar, so I cut out (or at least drastically down on) carbs. The black breadresult: a very slow weight loss. Of course, this is new to me so I don’t know if that two pound weight loss in a month will continue every month, but I’m willing to give it a try. Say, that’ll have a possible effect on eliminating the diabetes, too!

Until next week,

Keep living your life!

It’s National Kidney Month

March is National Kidney Month.  In the last few years, I’ve offered a new Chronic Kidney Disease book for sale during this month, but free on IMG_1398World Kidney Day. This year that’s March 10th.  The third Book of Blogs: Moderate Stage Chronic Kidney Disease, this year’s offering, has been retitled SlowItDownCKD – 2015. If my CKD writing has a ‘brand name,’ that’s it. Same writer, same type of blogs; just a new title for the series.  Check both Amazon.com on March 10th for your free digital copy.

There’s a reason there’s such attention being paid to our kidneys.  Last year’s National Kidney Month ‘Dear Abby column’ explains.

“DEAR ABBY: Hypertension runs in my family, but as a pretty healthy 49-year-old, I didn’t think much about it. I never realized that my pounding headaches were a direct result of high blood pressure. To make matters worse, the same high blood pressure that was causing my head to throb was also destroying my kidneys.

I wish I had known about my high blood pressure sooner and taken it seriously. When I finally learned about my kidney damage, it was too late to save them.nephrons

More than 73 million people are at risk for developing kidney disease, and I sincerely want to help them avoid this fate. My battle with kidney disease has turned me into an advocate for patients and those who are at risk. In honor of National Kidney Month in March and World Kidney Day on March 12, (Me: That was the date last year.) Will you please help me spread the word? — Lance Taylor in Minnesota

DEAR LANCE: I’m pleased to help you in this worthwhile effort. According to the National Kidney Foundation, 1 in 3 American adults is at risk for kidney disease. Major risk factors for kidney disease include diabetes, high blood pressure, a family history of kidney failure and being age 60 or older. Additional risk factors include kidney stones, smoking, obesity and cardiovascular disease.

Kidney disease often goes undetected because it lacks physical symptoms until the very late stages. By then the organs have already failed. But early detection, healthy lifestyle changes and proper treatment can slow the progress of kidney disease. Those at risk should have simple blood and urine tests to check if their kidneys are working properly.

Readers, if you are at risk, during your next physical examination, ask your health care practitioner to check your kidneys. To learn more about prevention, visit kidney.org. You will also find information about free KEEP Healthy kidney screenings in your area.”

NKF-logo_Hori_OBI’ve written about the more than 50 local offices nationwide that help the NKF provide early-detection screenings and provide other vital patient and community services. I went to the website, clicked on ‘Keep Healthy Event in your area,” and up popped the locations of this particular event.

Several years ago, my daughter Nima asked if could guest blog during National Kidney Month from the perspective of someone who loves a person with CKD. These are some of the highlights of that blog.

“I have to admit when my mother first told me she had CKD I freaked out ever so slightly. My knowledge of CKD was minimal, if that, and it took more than a few times of Ma telling me that CKD was in fact manageable and not a death sentence to calm down…..

One thing I had to get used to was reminding myself to mention at doctor visits that a parent has CKD, and to please take blood work to keep an eye on my own GFR levels. Every now and then I’d also get a helpful reminder from Ma right before a doctor visit.

I … have another resource that not everyone else has: I have a mother who is also writing a very detailed book (Working on the 4th one now.) about her experiences with discovering she had CKD. Getting a chance to read the manuscript of her upcoming book was probably where I got the meat and potatoes of my CKD education. (Nima is the professional Reader for all the CKD books I write.)nima kidney

For those out there that have a loved one that was recently diagnosed with CKD ….don’t be afraid to ask questions about what you can do to help and what you should know about how CKD affects your family member or loved one. I was always worried about tiring my mother out until she finally explained to me that as long as she gets a chance to lay down/nap before we go out, she’s usually fine.”

But it’s not just getting tired; the following appeared on Yahoo’s PRWEB on Monday, March 14, 2011. I took the online test mentioned in the article (which is still there and highly recommended) and, sure enough, I need to see an audiologist. Consider taking the online test yourself after you read this little known information about CKD patients.

“People with Chronic Kidney Disease Should Have Their Hearing Checked:

March is National Kidney Month

 People with Chronic Kidney Disease (CKD) should take the Across America Hearing Check Challenge—a free, quick, and confidential online hearinghearing test at http://www.hearingcheck.org. The non-profit Better Hearing Institute (BHI) is offering the test as part of its effort to raise awareness of the link between Chronic Kidney Disease and hearing loss. March is National Kidney Month. BHI’s online test will help people determine if they need a comprehensive hearing check by a hearing professional.”

Every part of you is affected by your Chronic Kidney Disease. That means that everyone in your life is affected by it, too. Bear knows I’ve got to exercise each day no matter what we have planned. My friends and family know that inviting us for dinner means I may not be able to eat what they’ve cooked, even if it’s ‘healthy.’ Think about that a bit and you’ll realize CKD is serious.What is it

Until next week,

Keep living your life.

The Breath of Life

Valentinr'sHere’s hoping you had a wonderful Valentine’s Day whether your Valentine was someone else or yourself.  I spent years celebrating myself in various ways: an afternoon at the bookstore, an evening dancing at a new dance hall, even simply coffee with a friend I hadn’t seen in a while, and enjoyed all of it.

This year I decided to celebrate with a book giveaway contest and was thrilled when one of the winners told me she’d never won anything before.  What better gift could I give her than a new experience? So that you can see SlowItDownCKD is a family affair,  the link for the video of the ‘drawing’ is http://www.youtube.com/watch?v=oQZSou8-Nc8. Our wondrous cancer free dog, sweet Ms. Bella, chose the winners while my even sweeter husband, Bear, did the videoing and helped me see what I couldn’t.2015-04-18 21.39.40

I was a bit sad to discover my Kidney Walk days are over (Thanks, neuropathy, you meanie you.), but I’ll be celebrating National Kidney Month in a different way this year and hope you’d like to join me.  The National Kidney Foundation of Arizona at https://azkidney.org/ will be hosting their joint conference with The Cardio-Renal Society on March 11 & 12.  I’ll be attending on the 11th.

Kidney ArizonaSome of you have already asked if you can accompany me.  Of course you can!  Here’s the address for the conference: http://www.swnc.org/. Register there and then contact me at SlowItDownCKD@gmail.com or via a comment on the blog and we can arrange to meet there.

There have been so many medical issues since last week that I wasn’t quite sure which one to use as the topic of today’s blog, so I decided to use the first one that came up chronologically.  That was the pulmonologist. When I was in New York back in October, I experienced some shortness of breath and a burning sensation in my chest while walking at the typical New Yorker’s pace (Oh, how I have forgotten what that’s like.) and climbing stairs to the subway and elevated train two, three, or four times a day.NYC

When I told the pulmonologist, who I was originally seeing for sleep apnea problems, he ordered a lung x-ray be completed two weeks before my appointment.  My lungs were perfectly clear. Yay! Hurdle number one passed.

Next, a breathing test.  While I wouldn’t exactly call this fascinating, it was interesting… and the technician administering it made it even more so as she explained what we were doing each step of the way and, more importantly to me, why we were doing it. I sat in a glass box while she alternately fed oxygen into my lungs or asked me to empty my lungs of the same by forcibly exhaling into a tube.

WebMd at http://www.webmd.com/lung/copd/diagnostic-tests?page=3 has an easy to understand explanation – the kind I like best – of these tests.glass booth

  • Nitrogen Washout: You breathe pure oxygen, and the air you breathe out is collected and analyzed for nitrogen content.
  • Helium Dilution: You breathe a gas mixture of helium and oxygen.
  • Body Box: This is the most accurate of these types of tests. You sit in an enclosed chamber, made of glass or clear plastic and perform a series of small panting breaths. While very accurate, the equipment requires specially-trained technicians to operate it.

My results were not perfect, but my lung capacity was 97% which was just fine for my age.  There goes that qualifier again: for my age. It’s hard for me to accept that time will have an effect on your body, although it’s perfectly logical. Although this is not something terrible, there have been so many borderline issues lately due to my age.

What is itOf course you’re wondering why I’m even writing about this in a Chronic Kidney Disease blog, right? To that end, I took a little jaunt into What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to clarify the issue for us. The first mention of the lungs was in an explanation of your nephrologist’s ROS.

“Then came the Review of Systems [ROS]. My primary care physician asked me questions about my constitution, the functional habits of my body such as weight changes, fever or chills. The cardiac part of my health was covered with questions about chest pain or palpitations. Finally, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. I found my answer in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, in an inquiry into erythropoietin, or EPO.Digital Cover Part 2 redone - Copy

“The National Kidney and Urologic Diseases Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf explains.

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

If you have fewer red blood cells, you are carrying less oxygen to your vital organs… which are the following according to livescience at http://www.livescience.com/37009-human-body.html

“The human brain….The human heart…. The job of the kidneys is to remove waste and extra fluid from the blood. The kidneys take urea out of the blood and combine it with water and other substances to make urine. The liver….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Okay, so the lungs are responsible for gathering oxygen from the air (for one thing) and healthy kidneys produce red blood cells to carry oxygen to your vital organs (again, for one thing). CKD reduces the oxygen you have since it reduces your red blood cell production. Add unhealthy lungs that gather less oxygen and you’re in for a very tired time.

Keep breathing, keep enjoying, and keep on top of your health.DIGITAL_BOOK_THUMBNAIL

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!

Blood and Thunder, Without the Thunder

I’ve been thinking a lot about blood lately and realize it’s time for a refresher about blood and CKD. It’s been doctor-visits-week for me and each one of them wanted to talk about blood test numbers… because I have Chronic Kidney Disease and my numbers are the worst they’ve been in seven years.Blood Oxygen Cycle Picture 400dpi jpg

This made me realize how very little I remember when it comes to how CKD affects your blood.  Soooo, I’m going right back to the very beginning. According to National Institute of Diabetes and Digestive and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-communication-programs/nkdep/a-z/kidney-disease-mean-for-me/Pages/default.aspx, this is how:

“CKD means that your kidneys are damaged and can’t filter blood like they should. This damage can cause wastes to build up in your body. It can also cause other problems that can harm your health.”

By the way, this is a reader friendly page with visuals that the organization freely shares. You’ve seen them in my books and blogs. There is no medicalese here, nor is there any paternalism.  I like their style.

The National Kidney Foundation at https://www.kidney.org/kidneydisease/aboutckd explains in more detail.

“If kidney disease gets worse, wastes can build to high levels in your blood and make you feel sick. You may develop complications like high blood pressure, anemia (low blood count), weak bones, poor nutritional health and nerve damage. Also, kidney disease increases your risk of having heart and blood vessel disease. These problems may happen slowly over a long period of time.”

Maybe seven years is that ‘long period of time’, not that I have heart or blood vessel disease that I know of. But I do have high blood pressure which may have contributed to the development of the CKD. Circular, isn’t it? High blood pressure may cause CKD, but CKD may also cause high blood pressure.  Or is it possible that the two together can cause ever spiraling high blood pressure and worsening CKD?

Book CoverI’m going to go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease here for some basic definitions that may be helpful in understanding today’s blog.

Albumin:   Water soluble protein in the blood.

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

Hypertension: A possible cause of CKD, 140/90 mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too. (New guidelines say these numbers are for CKD patients.)

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

Let’s take a detour to see how sodium can affect high blood pressure which can affect so many other conditions.  This is a quote from Healthline.com at http://www.healthline.com/health/fast-food-effects-on-body which appeared The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

“Too much sodium helps to retain water, so it can cause general bloating and puffiness. Sodium can contribute to high blood pressure {Which, as we know, is the second leading cause of CKD} or enlarged heart muscle. If you have congestive heart failure, cirrhosis, or KIDNEY DISEASE {My bolding and capitalization in this paragraph.}, too much salt can contribute to a dangerous build-up of fluid. Excess sodium may also increase risk for kidney stones, KIDNEY DISEASE, and stomach cancer.

High cholesterol and high blood pressure are among the top risk factors for heart disease and stroke.”Part 2

Oh my! Sodium, high blood pressure, enlarged heart muscle, stroke, heart disease, dangerous fluid build-up. They all can be inter-related. And that’s the problem with CKD:  your blood is not being filtered as it should be. There’s waste buildup in your blood now.

It’s that same not well filtered blood that flows through your body possibly causing hearing problems, as was discussed in a previous blog.  It’s that same not well filtered blood that flows through your body possibly causing your high blood pressure. It’s that same not well filtered blood that flows through your body possibly causing “swelling in your anklesvomitingweakness, poor sleep, and shortness of breath.” (Thank you WebMD at http://www.webmd.com/a-to-z-guides/understanding-kidney-disease-basic-information for that last quote.)

I’m sorry to say this all makes sense.  All these conditions are inter-related and they may be caused by CKD, or high blood pressure which causes CKD, or both.

blood pressure 300dpi jpg

I see something I’ve ignored here. I have high blood pressure and I have CKD… and a lot of microalbumin in my urine.  This is new, and it’s a bit scary. Oh, all right, a lot scary.  I write about it so I have to research it and therefore, allay my fear by learning about it.

What did I learn about microalbumin, you ask? The MayoClinic at http://www.mayoclinic.org/tests-procedures/microalbumin/basics/definition/prc-20012767 says it in the simplest manner.

“A urine microalbumin test is a test to detect very small levels of a blood protein (albumin) in your urine. A microalbumin test is used to detect early signs of kidney damage in people who have a risk of kidney disease.Unhealthy%20Kidney

Healthy kidneys filter waste from your blood and keep the healthy components, such as proteins like albumin. Kidney damage can cause proteins to leak through your kidneys and leave your body in your urine. Albumin (al-BYOO-min) is one of the first proteins to leak when kidneys become damaged.”

At first, I laughed it off; I already know I have CKD. Until I saw the results for this test, but I’ve requested what we used to call a do-over when we were kids and my doctor saw the value in that.

Ready for some good news?

Both The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 have indexes now. I promised them before Christmas and Kwanzaa and I delivered. Sort of, that is.  Amazon came through right away; B&N.com will take another five weeks or so.Digital Cover Part 1

Happy, happy holidays to all of you.  I’ll see you once more before 2016. Talk about time flying!

Until next week,

Keep living your life!

Are you kidding????? Again??????

MenorahGuess what I have.  No, it’s not a Chanukah gift from Bear (although I’ve already gotten one of those). Hang on, I’ll give you a hint: I got it even though I took my annual flu shot.

Yep, this is yet another year I’ve come down with the flu despite having been vaccinated.  I realize that the vaccine only covers the anticipated strains of the flu for a particular season, but how is it I manage to get that strain… the unanticipated one… so often?

This week is the beginning of Chanukah. For those of you who celebrate, I wish you the joyous glow of the season all year round. But wait, it’s also National Influenza Vaccination Week.

According to the U.S. government’s Centers for Disease Control and Prevention (CDC) at http://www.cdc.gov/flu/about/season/flu-season-2015-2016.htm,the shot

“National Influenza Vaccination Week (NIVW) is a national observance that was established to highlight the importance of continuing influenza vaccination…. The timing of flu is very unpredictable and can vary in different parts of the country and from season to season. Most seasonal flu activity typically occurs between October and May. Flu activity most commonly peaks in the United States between December and February.”

We’re deep into it now. Well, then, why do I need to keep taking this vaccine that seems to be the wrong one for me each year?

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

“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.”

This tidbit from http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf, which is the website of the Southeastern Kidney Council, Inc. was even more direct.

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

fit the fluIt’s here now. So what do I do about it? I was truly surprised at the OTC (over the counter) medications my former nephrologist recommended to me.  Tylenol Cold?  A steady regime for four days?  This for a CKD patient who has taken ten Tylenol in the last eight years?  But that’s what the man said.

Dylsem Cough Suppression was another OTC he recommended.  (Not the one with the ‘d’ on the label; that could raise your blood pressure.) Then there was the Benedryl that came with a caution not to take it until I was going to sleep. It would knock me out. Oh, and the Mucinex.

The one recommendation I got a kick from was hot tea with lemon and honey (I actually asked him if he knew my mother, but I don’t think he heard me.) laced with whiskey. This for someone who doesn’t drink?

It occurred to me (I do forget this and need to remind myself repeatedly) that when the media refers to the elderly in their public service announcements about the flu, they mean people over 65.  That means me.  I had not been paying attention to any health warnings for the elderly because they didn’t apply to me, or so I thought.  Hah!  Reality smacks me in the face again.

Let’s say you’re one of the lucky ones who has not yet gotten the flu and want to keep it that way. According to Healthfinder.gov, Office of Disease Prevention and Health Promotion, you can protect yourself by doing the following, in addition – of course – to being vaccinated:the flu ends with you

  • Stay away from people who are sick.
  • If you are sick, stay home for at least 24 hours after your fever is gone.
  • Wash your hands often with soap and warm water.
  • Try not to touch your nose, mouth, or eyes.
  • Cover your mouth and nose with a tissue when you cough or sneeze

Note: There is a technical error on their page right now, so you won’t be able to click through.

Knowing me, you’ve probably figured out I just couldn’t watch movies and read while I was sick. Nope, I needed to work. So I did. The print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 now has an index. This new, improved version (Sorry, no crackerjack prize in the box. Uhhhh, you won’t get that joke unless you’re a bit older.) should be available on both Amazon.com and www.BarnesandNoble.com this week.

That is in plenty of time for Chanukah. Remember, there are eight days that the holiday is celebrated. And I’m working on the index for print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, so it will be available before Christmas.

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I like giving you gifts. If you already bought the print copy without the index, email me at SlowItDownCKD@gmail.com and I’ll be very happy to send you the index.

And let’s not forget about What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Consider that an easy introduction for the newly diagnosed and their friends and family.

Book CoverI think I feel another The Book of Blogs: Moderate Stage Chronic Kidney Disease book coming on. Eeeek! Let’s wait until after the New Year to deal with a title for that one.

I wanted to remind you to use the search function if you have the digital version of any of the books. If you need a little reminder or tutorial as to how to use that, email me. I’ll be glad to help.

This year is flying by. The months flew by. Even today flew by.  Is it that I’m older and everything takes longer?  Or is it that I’ve learned to make the most of the hours in the day…month…years. Whatever it is, thank you for letting me share some of your time each Monday.

Until next week,

Keep living your life.

Tempus Fugit Iterum or Time Flies When You’re Having Fun, Part 2

Who would have thought there was so much information to share about colonoscopies? And who thought it would actually be interesting? Not me. But acting like a grown up and taking care of my health is both informative (We all know I research everything. It seems to be a compulsion.) and interesting. One site brings me to another.

colonoscopySince last week, I’ve gotten a few questions about the topic. One is how often should this be done? As we learned last week, most people – those without any risk factors – start at the age of 50. I started a bit later than that and had normal results, so was told I wouldn’t need one for another ten years. Yay!

That’s when things changed: sometime during the second decade after the first colonoscopy. This was almost five years ago.  The change was that several colon polyps were removed this time; some because they were bleeding, some because they were the larger kind that could become cancerous (adenoma).

Apparently, bleeding colon 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 former nephrologist said. Although they were bleeding, removing them did not stop the fatigue.  Maybe it was the sleep apnea…or maybe it was just plain being a Chronic Kidney Disease patient.Bleeding

Now, about that adenoma. AboutHealth at http://coloncancer.about.com/od/glossary/g/Adenoma.htm defines an adenoma in the following way.

An adenoma is a pre-cancerous (benign) growth that may occur in the colon. Adenomas arise from or resemble glands and can lead to colon cancer. This means that if left untreated, some adenomas eventually will develop into colon cancer. If an adenoma becomes cancerous, it is called an adenocarcinoma. Fortunately, adenomas typically are easy to find and to remove before they become cancerous, during routine colon cancer screening tests, such as adenomaa colonoscopy or a flexible sigmoidoscopy.

The American Cancer Society at http://www.cancer.org/cancer/news/specialcoverage/7thingstoknow has an easily understood, easy to read explanation of the whole process of colonoscopy and explains more than I have here.

While it sounds like an awful procedure, more often than not, you’re anesthetized first, both to make sure you don’t 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. Two things are very clear about anesthesia for us.

  1. The dosage of the anesthesia may have to be modified 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 colon polyps.  I saw the inside of my colon. I simultaneously wanted to get as far away from those revolting pictures as I could AND examine them carefully to see just what was going on inside me.

I keep using the term colon polyp, but haven’t explained it yet. MedicineNet at http://www.medicinenet.com/colon_polyps/article.htm#what_are_colon_polyps will help us out here.

Colon polyps are growths that occur on the inner lining of the large intestine (colon) and usually protrude into the colon. Polyps form when the genetic material within the cells lining the colon changes and becomes abnormal (mutates). Normally, the immature cells lining the colon are programmed to divide (multiply), mature, and then die in a very consistent and timely fashion. However, the genetic changes that occur in the lining cells prevents (sic) the cells from maturing, and the cells do not die. This leads to an accumulation of immature, genetically abnormal cells, which eventually results in the formation of polyps. The mutations may occur as a sporadic event after birth or they may be present from before birth.

I’ve got to be honest. I don’t care how I got mine. I.simply.want.them.gone. It’s come home to me lately that I am closer to 70 than 60. It’s also come home to me lately that I love my life and want to keep it as long as I can.IMG_2867

Last week, I touched on the prep having to be tailored for your CKD, too. Here’s a warning from The National Kidney Foundation at https://www.kidney.org/atoz/content/oralsodium

Patients with chronic kidney disease (CKD) who use bowel cleansing products should be aware of a recent warning issued by the FDA for a type of sudden loss of kidney function or acute kidney injury, as well as, blood mineral disturbances. Phosphate crystal deposition in the kidneys causes the loss of kidney function, which can lead to kidney failure. The medica