I’ll Sleep When I’m Dead

How many times have you said this (before your diagnose) to those who told you to slow down, take it easier, don’t rush so, take some time for yourself, etc.? As a younger person, I was a high school teacher, an actor, a writer, and – most importantly – a mother, actually a single mother once my daughters were double digit aged.

Guess what. You may sleep when you’re dead, but you need to sleep now before you hasten the time to your death. What’s that? You get enough sleep? I thought I did, too, but I wasn’t getting the kind of sleep I needed.

Why do we need sleep anyway? I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for some answers. The first reason I stumbled across was in an article from The Journal of The American Society of Nephrologists:

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

Ramon C. Hermida, PhD is the director of the bioengineering and chronobiology labs at the University of Vigo in Spain.

Hmmm, I take medication for hypertension… and I take it at night. I see that I need to sleep for it to work most effectively. I’ve known this for years and written about it. The point is you may need to know about it.

Then I started wondering if I were correct in the amount of sleep I thought I needed. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 was helpful here:

“How much sleep is enough sleep anyway? According to Dr. Timothy Morgenthaler of The Mayo Clinic site, seven to eight hours is what an adult needs, but then he lists mitigating circumstances under which you might need more:

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

While I’m not pregnant (and will become a medical miracle if I become pregnant), all the other circumstances do apply to me. During Shiva after my brother’s death, there was very, very little sleeping going on. Hence, sleep deprivation. I’m aging and my sleep quality is not great right now. Those are my circumstances, but they could be yours. Are you getting enough sleep?

Sometimes, simply having Chronic Kidney Disease can be the source of sleep problems. This is something I’ve written about several times. Here’s an excerpt from SlowItDownCKD 2015 about just that:

“We’ve known for a long time that sleep disorders are more common in kidney disease patients than in the general population,” Charles Atwood, MD, associate director of the University of Pittsburgh Medical Center’s Sleep Medicine Center in Pennsylvania, who wasn’t involved in the study, told Medscape Medical News. “A lot of studies in the past focused on the dialysis population. It seems like this group focused on people with milder degrees of kidney disease and basically found that they also have sleep disorders and I’m not surprised by that,” he added.

You can read the entire article at http://www.medscape.com/viewarticle/805342, although you will have to register for a free account.

By digging deep, far and wide, I finally figured out that toxic waste buildup in our systems (from the imperfect blood filtering by our kidneys) could be the cause of my segmented sleep. I took a comment from one study, a sentence from another, and unilaterally decided this was the reason. I am not a doctor – as I keep saying – and I don’t have the facts I’d like to behind this conclusion….”

Oh, right: you need a definition of segmented sleep. Wikipedia provides one:

“Segmented sleep, also known as divided sleep, bimodal sleep pattern, bifurcated sleep, or interrupted sleep, is a polyphasic or biphasic sleep pattern where two or more periods of sleep are punctuated by periods of wakefulness.”

The National Institutes of Health at https://www.nhlbi.nih.gov/health/health-topics/topics/sdd/why sums up our need for sleep beautifully:

“Sleep plays an important role in your physical health. For example, sleep is involved in healing and repair of your heart and blood vessels. Ongoing sleep deficiency is linked to an increased risk of heart disease, kidney disease, high blood pressure, diabetes, and stroke.

Sleep deficiency also increases the risk of obesity. For example, one study of teenagers showed that with each hour of sleep lost, the odds of becoming obese went up. Sleep deficiency increases the risk of obesity in other age groups as well.

Sleep helps maintain a healthy balance of the hormones that make you feel hungry (ghrelin) or full (leptin). When you don’t get enough sleep, your level of ghrelin goes up and your level of leptin goes down. This makes you feel hungrier than when you’re well-rested.

Sleep also affects how your body reacts to insulin, the hormone that controls your blood glucose (sugar) level. Sleep deficiency results in a higher than normal blood sugar level, which may increase your risk for diabetes.

Sleep also supports healthy growth and development. Deep sleep triggers the body to release the hormone that promotes normal growth in children and teens. This hormone also boosts muscle mass and helps repair cells and tissues in children, teens, and adults. Sleep also plays a role in puberty and fertility.

Your immune system relies on sleep to stay healthy. This system defends your body against foreign or harmful substances. Ongoing sleep deficiency can change the way in which your immune system responds. For example, if you’re sleep deficient, you may have trouble fighting common infections.”

I think I need to go to sleep now.

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

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!

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!

 

Starting the New Year with a Miracle

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

It’s a Miracle!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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!

CKD Treatment Interruptus

Recently, someone close to me experienced a major burglary.  After calling the police, he called me. That’s what my friends do and I’m thankful they do. I kept him on the phone while I threw on some clothes and sped over to his house. This is a strong, independent man who was shocked at the intimacy of the invasion of his home. When I got there, we walked from room to room, astonished at how much had been stolen.

That night, I couldn’t leave – not even to go home for my evening medications and supplements. That night, I couldn’t sleep while my buddy was in such turmoil. So we sat up staring at the empty space where the TV had been.  He’s not on the renal diet and all he had that I could eat was some chicken, no fruit, no vegetables. And I was too busy being with him to exercise. This was my good buddy of over 30 years standing.

The next morning, another friend came over to help with security devices and spend time with our mutual friend.  I got to go home, take my morning medications, and crawl into bed for ½ an hour. But then our mutual friend had to go to work, so I went back to my buddy’s house and spent the day helping him try to list what was missing, what to do about the insurance, how to handle going to work, etc. The word spread, and, suddenly, a third friend was coming to spend the night with him and another couple joined them to make dinner.  I could go home again.    friends

But I was exhausted. I ate stupidly: Chinese restaurant food with all that sodium. I even ate rice, and here I am on a low carbohydrate diet. I sat in the living room like a zombie while Bear waited on me hand and foot.

Even with all this help, my buddy needed to see me daily. I was his strength. So we ran around rummaging up some receipts he’d need for the insurance. But I could see he was feeling better. Our mutual friends were amazing, including those who couldn’t leave work to come so kept phoning and texting instead. A different someone else stayed with him overnight again.  Then he only needed to see me for a quick hug… and yet another someone else stayed with him overnight again. He didn’t really need me anymore, which is great because I started breaking down.

sad faceI have Chronic Kidney Disease. I need to sleep adequately – and with my BiPap. I need to follow the renal diet. I need to exercise. I need to rest.  I did very little of any of this during the trauma itself, and that’s alright. This is my long term buddy – as grown up and mature as he is – and he needed me. But what did I do to myself?

You guessed it. Right away, my blood pressure shot up and that’s a bad thing. Why? Let me tell you… or you can go to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 9.  FullSizeRender (2)

“Through my research, I began to understand what high blood pressure [HPB] has to do with renal disease.  HPB can damage small blood vessels in the kidneys to the point that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe HBP medication to prevent your CKD from getting worse since these medications reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.”

FullSizeRender (3)What about the stress?  What was that doing to my poor overworked kidneys?  I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for the answer to that one:

“First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {Blood sugar} and hypertension {Blood pressure} both play a part in Chronic Kidney Disease.”

That’s two strikes against me. I almost hesitate to think about exercise… or the lack of it for several consecutive days.  This is one of the points about treating prediabetes (which I have and so do so many of you) from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 which was included in SlowItDownCKD 2015:IMG_2980

“Losing excess pounds. If you’re overweight, losing just 5 to 10 percent of your body weight — only 10 to 20 pounds (4.5 to 9 kilograms) if you weigh 200 pounds (91 kilograms) — can reduce the risk of developing type 2 diabetes. To keep your weight in a healthy range, focus on permanent changes to your eating and exercise habits. Motivate yourself by remembering the benefits of losing weight, such as a healthier heart, more energy and improved self-esteem.”

And the renal diet? We mustn’t forget about the renal diet. In The Book of Blogs: Moderate Kidney Disease, Part 1 I quoted from http://www.yourkidneys.com/kidney-education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189 which is part of Yourkidneys.com from DaVita:

“Depending on what stage of Chronic Kidney Disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. In addition, carbohydrates and fats may be controlled based on conditions such as diabetes and cardiovascular disease. The IMG_2982CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.”

Have I done more permanent damage to my kidneys? I’m hoping not since it was just a few days and I made the conscious decision to be with my buddy instead of tending to myself. Let’s consider this a cautionary tale instead.

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!

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)

Two Levels?

I am now the very satisfied user of a Bilevel Positive Airway Pressure Machine (BiPAP). I fought against this for years, preferring to use a Mandibular Advancement Device (MAD) instead so I wouldn’t be ‘tethered’ to a machine. After only two nights of sleeping with the BiPAP, I have more energy and less brain fog. Heck, that happened after only one night. I wonder just how much of the low energy and high brain fog that I was attributing to Chronic Kidney Disease was really from not enough oxygen and too much CO2 in my lungs.

Whoops, here I am jumping in at the end again. Maybe a reminder of what a MAD is would be the logical place to start. This is what I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2,Digital Cover Part 2 redone - Copy

“…the MAD forces your airway open by advancing your lower jaw or mandibular.”

If your air passages are restricted, you’re simply not getting enough air into the lungs.

After well over two years, my sleep apnea started becoming worse instead of better, even when the MAD had been extended as far as it could go to keep that airway open. (Laughing over here; it sounds like an instrument of torture. It isn’t.)

You’re probably wondering what this has to do with CKD. I used my baby, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to find out.

What is it“The first mention of the lungs was in an explanation of your nephrologist’s ROS. ‘Then came the Review of Systems [ROS]. …, 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. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart below is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t mean the other effects should be ignored.

 

NIHMS233212.html

What was missing for me was why it was so important to get as much air into the lungs as possible. Livescience at http://www.livescience.com/37009-human-body.html was able to help me out here.

“….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.”

Why not a Continuous Positive Airway Pressure (CPAP) machine then, you ask? WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/continuous-positive-airway-pressure-cpap-for-obstructive-sleep-apnea explains:

“A CPAP machine increases air pressure in your throat so that your airway doesn’t collapse when you breathe in.” CPAP

Got it… and necessary when you have sleep apnea. So the next logical question is why was I prescribed a BiPAP instead. Notice in the explanation from Livescience above that the lungs also remove carbon dioxide. Yep, not enough was being removed as I slept.

I liked this explanation of the difference between the CPAP and the BiPAP from verywell at https://www.verywell.com/what-is-bipap-3015273 :

“The key distinguishing feature of BiPAP is that the pressurized air is delivered at two alternating levels. The inspiratory positive airway pressure (IPAP) is higher and supports a breath as it is taken in. Conversely, the expiratory positive airway pressure (EPAP) is a lower pressure that allows you to breathe out. These pressures are preset based on a prescription provided by your sleep doctor and alternate just like your breathing pattern.”

It’s when you breathe out that you rid yourself of carbon dioxide. But I wanted to know why too much of that in your system is not a good thing. I was delighted to find this scientific, yet understandable, (albeit older) posting by then Ph.D. candidate Shannon DeVaney at http://www.madsci.org/posts/archives/2005-06/1118758011.Gb.r.html. MadSci is a service provided by Washington University in St. Louis.

“…much of the body’s excess carbon dioxide ends up in the blood…. The net effect of increased carbon dioxide in the blood is lowered blood pH (that is, the blood becomes more acidic). The ability of hemoglobin to bind with oxygen decreases with decreasing pH in a phenomenon called the Bohr effect (sic). Because of the Bohr effect, increasing CO2 concentrations indirectly reduce the oxygen carrying capacity of the blood.

BiPAPCarbon dioxide can also react with parts of the hemoglobin molecule to form carbamino compounds. The formation of these compounds directly reduces the ability of hemoglobin to bind with oxygen and therefore also reduces the oxygen carrying capacity of the blood.

So, in these two ways (indirectly by reducing blood pH and directly by reacting with hemoglobin) carbon dioxide can reduce the ability of our blood to carry oxygen to tissues throughout the body where it is needed. It’s a good thing, then, that the excess carbon dioxide in our blood diffuses into our lungs, where it leaves the body when we exhale.”

Except in my case, it wasn’t. Hence the BiPAP to help me out.  If the results of the last two nights continue, it seems I needed an awful lot of helping out… and I didn’t know it. So far today, I have booked a combined 70th birthday cruise to Cuba for Bear and me, conferred many times by phone SlowItDownCKD 2015 Book Cover (76x113)and text with my wonderful sister-in-law – Judy Peck (mentioned several times in SlowItDownCKD 2015) – about cabins, insurance, land excursions, packages, etc., then gotten back to our travel agent with our decisions, spoken with three different doctors and two labs, communicated with three of my daughters, contacted our donation center for pick up, and scheduled several maintenance jobs for my house – and I’m not tired. I haven’t yawned once. I could learn to like living like this.

By the way, between Medicare and my secondary insurance, this is not costing me a thing. Oh goody, more money for our birthday present to ourselves.

Until next week,DIGITAL_BOOK_THUMBNAIL

Keep living your life!

Proof Positive

Name

Standard Range

 5/29/15  9/4/15
TSH

0.450 – 4.500 uIU/mL

 1.900  3.480

diabetes

Name

Standard Range

5/29/15 9/4/15
Microalbumin, Urine

0.0 – 17.0 ug/mL

29.7 38.9

Glomerulus-Nephron 300 dpi jpg

How’s that for proof positive of what stress can do to you?  Other values also shot up, some past the normal range. While .57 to 1.00 mg/dL is within range for creatinine, I knew mine was a bit beyond this range. Now it’s shot up from 1.02 to 1.12.

My glucose – which I’ve spent over a year getting and keeping in range – went up from 94 to 117 mg/dL. The normal range is 65-99.

And my GFR? Oh no, down to 51 from 56.  So now I’m a stressed, sicker person.

Mind you, this was unavoidable stress. There was a medical emergency in the family (No, it’s not me.) and, by default, I was the one handling it. There simply wasn’t anyone else to do it at the time and it had to be dealt with immediately.  It was that kind of emergency.

There went the carefully orchestrated seven hours of sleep a night.  A 36 hour round trip to New Jersey with snatches of sleep here and there killed that.

There went the carefully orchestrated daily exercise. I couldn’t leave the patient alone long enough to even walk the airports… and the patient was incapable of doing it, anyway.

There went the carefully orchestrated ingestion of 64 fluid oz. It was catch as catch can since you can’t bring water into the gate area and they only had flavored or mineral infused water for sale once you passed the entry area.

There went the carefully orchestrated renal diet.  No, wait, that one I was very, very careful about.  I just drove the restaurant servers nuts with all my modifications. I figured if I could hold on to that, maybe I wouldn’t do as much damage to my kidneys and sugar levels as I feared I might.

Now that I’ve started in medias res (Latin for in the midst of things. Something I remember from long, long ago at Hunter College…even in an emergency.), let’s backtrack a little.  The obvious mystery is mg/dL. I have responded ‘huh?’ to this before. It means milligrams per deciliter.

Convert Deciliters To Fluid Ounces

Quantity Deciliters Fluid Ounces

(Courtesy of http://www.csgnetwork.com/directvolcvtdl2fo.html)

You’re probably familiar with mg. if you take any prescription medication.  As for deciliter? (I love that I remember so much from college almost 45 years ago.) That means 1/10 of a liter or 3.8 ounces. For the sake of full disclosure, I did have to look up the equivalent in ounces. So you see, there wasn’t that much change in my values, but enough for me – and my PCP – to notice.

Book CoverTo be perfectly honest, I had to use What Is It and How Did I Get It? Early Stage Chronic Kidney Disease as my bible to even understand these results.  Odd how you forget what you spent so much time learning… especially during an emergency.

TSH means Thyroid Stimulating Hormone. This is what I wrote about it.

“Part of the CBC [comprehensive blood test] which measures your triiodothyronine, which is a thyroid hormone that plays an important role in controlling your metabolism.  If the T3 reading is abnormal, then the T4 test is ordered to find out what the problem might be.

So it’s really a test to see if you need another test to check your thyroid function.  Notice how much closer I came to needing that secondary test while I was under stress. Although I was still within normal range, that was a significant jump.  No wonder my metabolism is screwed up. That is governed by your thyroid.

As for the Microalbumin, Urine, I was out of bounds there and, frankly, that worries me. This

“tests for micro, or very small amounts, of albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so the albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Well, I know I have Chronic Kidney Disease and I don’t like this indication that stress is making it worse. I’ve worked too hard for the last eight years to let this happen.

I’m hoping the renal dietician can help me get back on track when I see her later today. I follow the renal diet that was designed for me, but now I believe it needs some tweaking.food label

I’ve also been declared pre-diabetic since the last time I saw her.  Although I’ve been to see a diabetes counselor for several months, I’m wondering if today’s appointment with the renal nutritionist will give me ideas about how to include the pre-diabetes diet in the kidney disease diet.

I was down at my Primary Care Doctor’s appointment this past week; I won’t deny it. Add these test results to the family medical emergency plus 9/11 (I watched the buildings from my classroom window and went to more memorials that week than any 10 people should have to go to in a year.) and  unexpected death of a neighbor and I really wasn’t myself.  I finally asked her, “What’s the point of all my hard work if I end up with these results?”

Being the kind of person she is and the kind of doctor she is, she reminded me it was my hard work that kept my rising values from rising even more. Funny, but that got me right back on track.  Thank you to my PCP and other concerned doctors like her.

Talking about testing, here’s something locals should know about and it’s this Saturday, folks.

11990439_10204944411870363_4775265224050810062_n

Call me crazy, but I’m having quite a bit of fun indexing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. It seems to me that I’d rather be doing that or researching than working on my fiction.  Hmmmm, what am I telling myself?

IMG_1398

 

Until next week,

Keep living your life!

Sexy!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Maybe Just a Little One

IMAG0269 (1)I love my dog, and because she’s recently had three surgeries for cancer, I’ve had some sleepless nights.  It looks like she’s going to be all right, but I’m tired.  So I thought about taking naps. Well, I really thought about napping after Nima sent me a chart of the value of different length naps and asked me if that information were true.

As Chronic Kidney Disease patients, most of us have sleep problems.  For a while, I experienced interrupted sleep.  That seems to have magically disappeared.  Not so, the sleep apnea which will be my constant companion for life…and why I wear the mandibular advancement device every night. Then there’s insomnia and let’s not forget restless leg syndrome.

I know, I’m rushing again.  I think I’ll start to slow down by explaining the difference between insomnia and interrupted sleep.

{As I wrote last week} According to Wikipedia – which is open to the general public for editing – this is the definition

Segmented sleep, also known as divided sleepbimodal sleep patternbifurcated sleep, or interrupted sleep, is a polyphasic or biphasic sleep pattern where two or more periods of sleep are punctuated by periods of wakefulness.

Insomnia, on the other hand, according to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/insomnia/basics/definition/con-20024293 is

… a persistent disorder that can make it hard to fall asleep, hard to stay asleep or both, despite the opportunity for adequate sleep. With insomnia, you usually awaken feeling unrefreshed, which takes a toll on your ability to function during the day. Insomnia can sap not only your energy level and mood but also your health {which is already compromised by Chronic Kidney Disease}, work performance and quality of life

I’ve never discussed restless leg syndrome so we’ll need a definition of this, too.  MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=16440 tells us this is

An uncomfortable (creeping, crawling, tingling, pulling, twitching, tearing, aching, throbbing, prickling, or grabbing) sensation in the calves that occurs while sitting or while lying down. The result is an uncontrollable urge to relieve the uncomfortable sensation by moving the legs. Restless leg syndrome is a common cause of painful legs. The leg pain typically eases with motion of the legs and becomes more noticeable at rest, worsens during the early evening or later at night, and may cause insomnia.

Whoa, there’s a lot keeping us up at night!

Well, what about napping?  I found this wonderfully explanatory chart on the web. What I truly liked about it is all the attributions at the bottom.  I didn’t know much of this and found it too enticing not to share the entire chart with you.  The source is Positive Med at http://positivemed.com/2012/09/17/napping/napping

As to the best way to nap, HPRC {Human Performance Resource Center, a Department of Defense initiative under the Force Health and Protection Readiness Program} at http://hprc-online.org/mind-tactics/sleep-optimization-1/sleep-optimization-strategies/nap-to-be-at-your-best-mentally  has the simplest, most direct answer:

The bottom line? Your brain requires sleep to function optimally. If you do not get the recommended seven to eight hours of sleep each night, then napping will reduce your sleep debt. Nap when you can and as long as you can to get the seven to eight hours of sleep you need every 24 hours.

No fuss, no bother, just do it.  This common sense approach to napping has me reconsidering.  If my body needs it, tells me so, and makes it difficult to function without sleep, why not nap?

Something else that’s been keeping me awake is converting The Book of Blogs: Moderate Stage Chronic Kidney Disease from digital to print. I don’t mind this at all.  My brain is bursting with ideas about this and I’m eager to get to the editing.  I’m laughing at myself for ever thinking this was going to be a piece of cake.  It’s a print book, for goodness’ sake!  That means all the click throughs and web addresses need to go.  Yet, the sources of whatever I use that someone else wrote must remain clear.41DsvandphL._BO2,204,203,200_PIsitb-stThe Book of Blogs

Thank you, thank you, thank you to all the readers who have dropped me notes that they’re already enjoying the digital copy of the book.  I hope you were all able to make use of the two day discount price of $ .99 to celebrate the publication of my second Chronic Kidney Disease Book.

While Amazon is terrific at coming up with ways to keep the book affordable, I won’t be able to do another low price or free day until April according to the contract I signed. Keep in mind that you can lend it for free for 14 days if you are a member of Kindle Unlimited.

Once I finish editing The Book of Blogs: Moderate Stage Chronic Kidney Disease for print – Book Coverand you know I’ll be sure to let you know when the print version is available – be on the lookout for a box set of this second book and my first about our disease What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

And this is where I start asking you for reviews.  I realize it’s early days {to borrow a phrase from Downton Abby} yet, but I would appreciate a review on Amazon when you finish the book. Amazon.com will be my only distributor for this book.

Until next week,

Keep living your life!

 

 

Is It Really So Bad?

Lately I’ve been experiencing what is commonly referred as interrupted sleep pattern.  According to Wikipedia – which is open to the general public for editing – this is the definition:

Segmented sleep, also known as divided sleepbimodal sleep patternbifurcated sleep, or interrupted sleep, is a polyphasic or biphasic sleep pattern where two or more periods of sleep are punctuated by periods of wakefulness.

I know, I know.  You’re thinking “Well, of course you are with all the excitement that goes along with the publication of The Book of Blogs: Moderate Stage Chronic Kidney Dsleepisease this past week and all the celebrations that go along with the holidays.”  You’re right, it is exciting, but that’s not the cause of my interrupted sleep.

No, it’s not worry about my sweet dog’s cancer problems, either.  She has had three operations and is recovering so well that she doesn’t realize she still has an open wound at one of the surgery sites.

Well, yes, it is true I have sleep apnea. According to WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/sleep-apnea:

Sleep apnea is a serious sleep disorder that occurs when a person’s breathing is interrupted during sleep. People with untreated sleep apnea stop breathing repeatedly during their sleep, sometimes hundreds of times. This means the brain — and the rest of the body — may not get enough oxygen.  . 

But I also have a Mandibular Advancement Device that treats the problem.  This is how the device works as explained at http://www.mandibularadvancementsplint.com/mad

Mandibular advancement is a simple technique for opening the airway, keeping the palate taught and helping your breath to flow during sleep – thereby preventing snoring and relieving mild to moderate OSA. Mandibular advancers work, as the term implies, by advancing the lower mandible forward. This is often done using a malleable mouthpiece that is worn between your upper and lower teeth when sleeping.

While I am not specifically endorsing their product, their explanation is clear.

Restless leg syndrome?  No, I don’t have that.  But here’s what MedicineNet at http://www.medicinenet.com/restless_leg_syndrome/article.htm has to say about it anyway:

Restless leg syndrome (RLS, restless legs syndrome) is a common cause of painful legs. The leg pain of restless leg syndrome typically eases with motion of the legs and becomes more noticeable at rest. Restless leg syndrome also features worsening of symptoms and leg pain during the early evening or later at night.CoffeeCupPopCatalinStock

Hmmm, I’m pretty careful about sleep hygiene.  Let’s go to http://sleepfoundation.org/ask-the-expert/sleep-hygiene for an explanation of just what that is.

  • The most important sleep hygiene measure is to maintain a regular wake and sleep pattern seven days a week.
  • Avoid napping during the day. It can disturb the normal pattern of sleep and wakefulness.
  • Avoid stimulants such as caffeine, nicotine, and alcohol too close to bedtime. 
  • Exercise can promote good sleep. 
  • Food can be disruptive right before sleep.  
  • Ensure adequate exposure to natural light
  • Establish a regular relaxing bedtime routine.  Associate your bed with sleep. 
  • Make sure that the sleep environment is pleasant and relaxing

So what is the problem?  Surprise, well it was a surprise to me.  Chronic Kidney Disease, even “milder degrees of kidney disease” could be the cause.

bluesThis was the headline for a June, 2013, MedScape article about a (then) recent study:

Sleep Problems Common in Chronic Kidney Disease

“We’ve known for a long time that sleep disorders are more common in kidney disease patients than in the general population,” Charles Atwood, MD, associate director of the University of Pittsburgh Medical Center’s Sleep Medicine Center in Pennsylvania, who wasn’t involved in the study, told Medscape Medical News. “A lot of studies in the past focused on the dialysis population. It seems like this group focused on people with milder degrees of kidney disease and basically found that they also have sleep disorders and I’m not surprised by that,” he added.

You can read the entire article at http://www.medscape.com/viewarticle/805342

By digging deep, far and wide, I finally figured out that toxic waste buildup in our systems (from the imperfect blood filtering by our kidneys) could be the cause of my segmented sleep.  I took a comment from one study, a sentence from another, and unilaterally decided this was the reason.  I am not a doctor – as I keep saying – and I don’t have the facts I’d like to behind this conclusion.  It’s a good thing I’ll be seeing my nephrologist next month because I have loads of questions about whether there is any scientific proof behind my thinking and, if so, what that is.

Oddly enough, while I’m concerned about segmented sleeping, there seems to be a movement espousing it as the healthiest way to sleep. This quote from National Post at http://life.nationalpost.com/2012/07/16/rest-assured-theres-nothing-wrong-with-segmented-sleep/     hit the nail on the head for me:

So my curiosity was piqued when a recent BBC online story, “The myth of the eight-hour sleep,” shone a light on a growing body of research suggesting that “segmented sleep” is perfectly normal. It appears that in centuries past, and in pre-industrial societies, bedtime has meant falling asleep once, then waking for awhile, and then going back to bed for a “second sleep.”     

So now I can drive myself nuts wondering whether this segmented sleep is a good thing for a CKD patient or simply wait to speak to Dr. Atalla since my usual researching is not helping here.  I vote to lay the issue aside until I speak with him.

41DsvandphL._BO2,204,203,200_PIsitb-stThe Book of BlogsOh, but I do want to speak with you.  To celebrate the publication of my second CKD book, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Amazon.com has been kind enough to allow me to offer the digital copy for 99 cents tomorrow and Wednesday.  Get it?  Two books, two days. Unfortunately, there wasn’t any way to work out offering What Is It and How Did I Get It? Early Stage Chronic Kidney new blog shotDisease for 99 cents for the same two days.  Wouldn’t that have been perfect!

Amazon has been terrific about offering free samples of the book, arranging for the Look Inside feature, and including the book in both Kindle Unlimited and Kindle Owners’ Lending Library. If you belong to those programs, you can borrow the book for free.

Until next week,

Keep living your life!

Sleepus Interruptus

I just started – and trashed – three different versions of what I thought today’s blog would be about because I didn’t understand the research.  That’s the trouble with not being a doctor, and why I always remind you to speak with your nephrologist before you take anyone’s advice about your Chronic Kidney Disease, even mine.

I finally decided to write about my first choice.  This is yet another indication that our hunches are right.  My hunch after a night of waking up just about every hour was to write about CKD and interrupted sleep.  I should have listened to myself and saved all that time.baby-shots-5

DaVita.com at http://www.davita.com/kidney-disease/overview/living-with-ckd/sleep-issues-and-chronic-kidney-disease/e/4896 tells us there are several reasons CKD patients have sleep problems:

  • restless leg syndrome
  • sleep apnea
  • inadequate dialysis clearance
  • emotions
  • changes in sleep patterns
  • caffeine

We share most of these reasons with those who do not have CKD except for those dealing with dialysis.  This includes the inadequate dialysis clearance.  It also includes restless leg syndrome which is usually associated with hemodialysis session. Since I only write about early stage, I won’t be discussing these causes.

Let’s talk about sleep apnea.  I wrote a blog about on August 12, 2012 that refers to this.  The most important information from that blog is:

“I found a study at http://www.medscape.com/viewarticle/538872which clearly links

sleep apnea and hypertension. Dr. John J. Sim makes the connection very clear:

‘We think there may be a causative factor here; that sleep apnea may be causing directGlomerulus-Nephron 300 dpi jpg

 glomerular injury,’ Dr. John J. Sim (Kaiser Permanente, Los Angeles, CA) told renalwire .

‘We already know that sleep apnea causes hypertension and that hypertension causes

kidney disease.’ If some degree of causality can be shown, it’s possible that treating sleep

 apnea may slow the progression of kidney disease, the authors speculate.”

This particular study was conducted in 2005.

Obstructive sleep apnea (OSA) was also the subject of January 13, 2014’s blog.  That’s where the following information is from:

“Have I ever told you I have sleep apnea?  And that this affects CKD patients? I do and it

does. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National

Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of

the problems of CKD.  It can also result in glomerular hyperfiltration.”

This is from a 2010 study.

madOkay, so I have sleep apnea, had a sleep study and started wearing a Mandibular Advancement Device (MAD) at night to correct the problem, yet I still experience interrupted sleep.

Hmmmm, what is this ‘changes in sleep patterns’? Oh, of course.  Because I have CKD, I become more tired and even drowsy during the day.  Maybe I’ll sit on the couch in the family room to read for a bit; maybe I’ll even lay down there; and maybe – just maybe – I’ll fall asleep during the day.  Nothing wrong with naps, but if they’re long naps they could interfere with your sleep pattern.

So can going to bed earlier.  I tried that on really tired days and ended up waking up repeatedly.  I do go right back to sleep, but it just didn’t seem restful. Keep in mind that as you age, your sleep cycles are lighter and shorter.  So I may think I’m getting all the sleep I need, but the waking up interrupts the cycling of the different stages of sleep and then I start the cycles all over again.

WebMD at http://www.webmd.com/sleep-disorders/guide/sleep-101 tells us,

Victorian clock“During the deep stages of NREM sleep, the body repairs and regenerates tissues, builds

bone and muscle, and appears to strengthen the immune system. As you get older, you

sleep more lightly and get less deep sleep. Aging is also associated with shorter time spans

of sleep, although studies show the amount of sleep needed doesn’t appear to diminish

   with age.”

Uh-oh, the deep stages of NREM (non-rapid eye movement) sleep are stages 3 and 4 which I may be missing by constantly waking up.  These are also the stages during which the body restores itself.

Emotions?  I can see that.  I dwell on the family’s medical problems, or someone I know and love who is out of work, or even my sweet Bella’s brush with cancer and I can get myself truly worked up.  So I don’t.  I mean I don’t think about these things at bedtime.  If I can’t seem to get them out of my head, I write a list of things to think about tomorrow.  As simplistic as it sounds, it works for me.  This is one piece of advice you don’t need to check with your nephrologist.

Wait a minute!  Who included my beloved caffeine on this list?????? This is where I get emotional.  Those two cups of caffeine a day are the only item on my renal diet that help me not feel deprived.  Okay, maybe we do need to be a bit rational about this (Don’t you just hate to be a grown up sometimes?).

This is what The National Sleep Foundation at http://sleepfoundation.org/sleep-topics/caffeine-and-sleep has to offer us about caffeine and sleep:

“Caffeine enters the bloodstream through the stomach and small intestine and can

have a stimulating effect as soon as 15 minutes after it is consumed. Once in the body,CoffeeCupPopCatalinStock

caffeine will persist for several hours: it takes about 6 hours for one half of the caffeine

to be eliminated.”

Six hours for only half to be eliminated?  You mean, twelve hours for all of it to be eliminated?  I have got to stop drinking caffeine after noon. Okay, I can learn to live with that.  Heck, it’s better than no coffee at all.

Hopefully these suggestions will take care of my interrupted sleep problems.  Now what about yours?  Remember to speak with your nephrologist if you want to explore any of my suggestions.  As far as the emotions causing sleep problems, if my trick doesn’t work for you and you feel you need professional help with your emotions, please get it.

Here’s my last suggestion: buy a copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease before Moderate Stage Chronic Kidney Disease: The Book of Blogs is published. Then you’ll have the set of two.Book signing

Until next week,

Keep living your life!

A Foggy Day… in Your Brain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Sometimes I’m Down

Sometimes I get down, even when good things are happening in my life.  For example, the podcast discussing SlowItDown will be available at www.renaldiethq.com/008  as of 6 a.m. this Wednesday.  That’s a good thing, right?  And Bear felt up to going to a movie yesterday.  That’s another good thing.  Yet, my heart is heavy.kidney-book-cover

That, of course, got me to wondering if this had anything to do with Chronic Kidney Disease.  And it turns out, it does.  While this sadness seems to always to be short term for me, it comes and goes for no apparent reason.

So I did what I do best.  I researched… and found more than I’d expected about this subject.

Way back in 2009, The National Kidney Foundation, Inc. published their findings after performing a study,

“Depression has long been associated with end stage kidney disease, but a new study published today in the American Journal of Kidney Diseases, the official journal of the National Kidney Foundation, found that 20% of patients with early stage chronic kidney disease (CKD) also suffered from depression.”

You can read the rest of this short, but informative article at http://www.medicalnewstoday.com/releases/162766.php

sadLooking further back, I noticed that in 2006,  US National Library of Medicine, National Institutes of Health published a study on its PubMed.gov site calling for “…further well-designed, longitudinal, survival studies to clarify the relationship better between depression and the different stages of renal dysfunction.”  This is a bit more technical, but you can find it at http://www.ncbi.nlm.nih.gov/pubmed/16412828.

So there is a connection.  And I fell into that connection.  Which doesn’t mean that I’m clinically depressed or that I need treatment.  What it does mean is that I need to accept that I will have my down days now and again… and they will pass.

Somehow, it strikes me that everyone – CKD patient or not – has such days.

DaVita, the company that provides the trained educators who go into the community for SlowItDown, has this to say about depression and CKD:

“Depression can have many causes. In the case of someone who has just been diagnosed with chronic kidney disease there may be a lot of information to process about your physical health, which may lead to strong emotions about your life and how it may change. Similarly, once a person reaches end stage renal disease and begins dialysis, there are lifestyle adjustments to be made that could bring up feelings of despair. Many times these feelings are temporary; however, if you find you’re having difficulty don’t hesitate to get the help you need.”

They’ve got more information about this disease and depression on their website, particularly at http://www.davita.com/kidney-disease/overview/living-with-ckd/depression-and-chronic-kidney-disease/e/4917sad woman

It made sense to look at the other end and see if depression caused CKD, just as diabetes and/or high blood pressure may be both caused by CKD and may be the cause of CKD. The following is from a private mental health center in Scottsdale.  It’s especially interesting because of the size and duration of the study – 5,785 subjects under scrutiny for 10 years.  It is also specific to CKD patients, although it is from 2010.

“This particular study concluded that the patient population suffering from depression was more likely to develop kidney disease and a decline in kidney function. These studies are still in the very early stages and should not alarm anyone suffering from depression but should act as a motivator to encourage individuals to seek help for their depressive symptoms. On the other hand, it is known that depression is very common among patients with chronic kidney disease and studies have shown that if the depression is left untreated; the prognosis of the kidney diseases is much worse.”

I found the above at http://psychiatristscottsdale.com/depression-and-kidney-disease/

Fresenius Medical Care, which is actually a dialysis provider, (no, I don’t need dialysis; I just liked the comforting information on their site.) offers this distinction between common mood swings and depression:

“You may already know that people with chronic diseases are even more prone to depression …. Depression is a broad term that describes a set of mood disorders. Some are long-term and some are short-term. Certain types are milder, while others are very strong and very harmful. For our purposes, we will place them into two groups: Common mood swings and Ongoing depression

Everyone has common mood swings. They may look like depression, because you feel sad, discouraged, lack energy, may lose sleep, or doubt yourself over some event or relationship. These moods last from a few hours to a few days, and then subside. Clinically speaking, this is not depression, but a normal response to life changes.”

There’s more at http://www.ultracare-dialysis.com/KidneyDisease/CopingWithKidneyDisease/Depression.aspx#sthash.WnJm91YA.dpuf

It makes sense to list the symptoms of actual depression here so you can tell the difference between common mood swings and depression.Book Cover

Make The Connection, a veterans’ support site at http://maketheconnection.net/conditions/depression?utm_source=adcenter&utm_medium=cpc&utm_term=symptoms%20of%20major%20depressive%20disorder&utm_content=signs&utm_campaign=depression tells us:

“Not everyone with depression has the same symptoms or feels the same way. One person might have difficulty sitting still, while another may find it hard to get out of bed each day. Other symptoms that may be signs of depression or may go along with being depressed include:

You need to be careful.  If you suspect you have depression, make sure you seek professional help.  Not everyone gets to the point of feeling suicidal, but you want to make sure you don’t.

firworksI love it!  Just by writing about depression (or common mood swings in my case), I feel cleared of it.  Maybe a little knowledge is a dangerous thing, but I find it helps me cope.

Until next week,

Keep living your life

Just Breathe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!Book Cover

Book It!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep living your life!

‘Twas The Night Before The Night Before Christmas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next year,

Keep living your life!

SlowItDown

I’m so involved with kidney projects that sometimes I forget other people – like readers – are not necessarily on the same page with me (like that writers’ turn of phrase?).  Luckily, people are not afraid to ask me what I’m talking about… and that’s exactly why this week’s blog is about SlowItDown.

Let’s start with the press release; that should introduce the project well:

 SlowItDown                                          CKDed@cox.net                                                            602-509-4965

kidney-book-cover

Chronic Kidney Disease is on the rise.  One of nine people in the mainstream has it and may not even know.  Blacks, Hispanics, Asians, and Native Americans have a much higher incidence of the disease in their communities. This disease cannot be cured, but it can be slowed down if you’re educated to do so.

SlowItDown is the product of a project created by Gail Rae-Garwood when she participated in a Landmark Worldwide leadership program. Landmark is a training and development company known for their flagship course The Landmark Forum (www.landmarkworldwide.com).

The project provides trained Chronic Kidney Disease educators from KidneySmart on a monthly basis at no cost to any community that needs it within the United States.  All the educators need is a place to hold their classes and permission to do so.  This is a self-sustaining program designed to reach the largest number of communities possible.

Ms. Rae-Garwood said, “I am also a Chronic Kidney Disease patient who just happens to be a non-fiction writer.  I’ve written a book (What Is It and How Did I Get It? Early Stage Chronic Kidney Disease available at Amazon.com and B&N.com) so Chronic Kidney Disease patients can see how to manage their disease. I have a Facebook page, twitter account, and blog of the same name to disseminate information, but these still aren’t enough. Chronic Kidney Disease is serious… and I’m serious about getting the necessary education to the communities that need it. “

I may have mentioned a time or two that SlowItDown is now educating in the Salt River Pima – Maricopa Indian Community right here in Arizona.  We are also working with both the Burmese and Chinese communities locally in an effort to bringing the class to them.  An upcoming Wall Street Journal article about activists for their illnesses will include SlowItDown (and me!).  We’re getting the word out there, just too slowly for my taste.  Notice the address and phone number on the press release if you’d like SlowItDown to bring this education to your community or another you know needs the information.Salt River Great Seal

The following is SlowItDown’s proposal:

Chronic Kidney Disease is increasing at amazing speed. All aspects of the population are being diagnosed with this disease. Almost 59% of the U.S.A.’s population is expected to have it soon.

While Chronic Kidney Disease is not curable, the progress of the decline in kidney function caused by this disease can be slowed down.  But people need to be educated that this disease exists, how to be screened for it and then how to manage it so that they are not immediately on dialysis or at death’s door.  People can live for decades with Chronic Kidney Disease if they know how to manage it.

SlowItDown can provide trained Chronic Kidney Disease educators on a monthly basis at no cost.  All the educators need is a place to hold their classes and permission to do so.  This is a self-sustaining program designed to reach the largest number of people possible.

The educators will teach the basics, such as: what Chronic Kidney Disease is, how you get it, what the screening process is and – most importantly – how you slow down the progress of the disease via diet, medication, exercise, and weight control.

I am also a Chronic Kidney Disease patient who just happens to be a non-fiction writer.  I can easily mail you a copy of my book so you can see for yourself how Chronic Kidney Disease patients can manage their disease.  I have a Facebook page, twitter account, and blog of the same name (What Is It And How Did I Get It? Early Stage Chronic Kidney Disease) to disseminate information, but these aren’t enough.

Chronic Kidney Disease is serious… and I’m serious about getting the necessary education to everyone who needs it.  SlowItDown now has its own Facebook and Twitter accounts, too.

We’re presently educating in the Salt River Pima – Maricopa Indian Community. With both the local Chinese and Burmese communities getting ready for this education.  You don’t have to be a member of a high risk group for this free education.  Although, sometimes all you have to do to be a member of a high risk community is be over 60 … like me.

Notice there’s even more information in it.  It’s beginning to make sense to me to reprint here  – in the blog – articles I’ve written about CKD.  I notice that each one has a little more or different information.  Keep checking SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Twitter and Facebook pages for tidbits about our disease and other interesting medical information that just might pertain to us.

Book CoverTalking (okay, writing) about the book, I just realized it’s for sale in the United Kingdom, Australia, Brazil, Canada, China, France, Germany, India, Italy, Japan, Mexico, and Spain.  Thank you, Amazon.com!

It’s the holiday season.  What better time to talk (I know, I know: write) about Amazon’s Kindle MatchBook program, not that you haven’t read it here before.  Here’s the part I like – if you have EVER bought a copy of the print book, you are eligible to buy the digital book at 70% off.  Gift a newly diagnosed patient or his/her family and friends with knowledge about this disease.  I know that’s what helped me cope during that panicky time when it was all so new to me.

Personally, we have a lot to be thankful for.  Bear’s cast is off after six weeks as of this morning, neither he nor I have any lingering effects of the bronchitis for me/viral infection for him, our children are all healthy, our two almost son-in-laws are exactly who we would have chosen had we any say in the matter (Hah!), and we are looking forward to when he (Bear) can walk again.

I intend to have a banner week!  Join me?

Until next week,

Keep living your life!

And (S)He’s Safeeeeeeeeeeeeee

Having had no medical emergencies this past week (thank heavens!), I was casting around for this week’s topic when my dentist reminded me that I need to keep whitening my other teeth for at least another week so they somewhat match the new upper front six tooth sparkling teethbridge.

Whiteners… how do they affect the kidneys if they do at all?   Should I use over the counter products?  A kit I purchase from the dentist?  An in-the-chair dental bleaching?

These are the kinds of questions I keep asking, for deodorant, toothpaste, makeup, even waxing.  Boy, have I ever covered a lot of ground in this area in the last couple of years.  But, as usual, it’s still not enough.  I’ve been playing around with the idea of a newsletter based on what’s safe and what’s not as far as personal products and medical treatments.

smelly armpitsI’ve already written about deodorants and toothpaste.  What a response, especially to the deodorant blog! Most of my readers are not direct email, but read the blog via Facebook and that’s where the lively discussions take place.

Here’s another example.  When I wrote about macular degeneration, I mentioned that my ophthalmologist offered his own designer vitamin that had a 25% chance of slowing down the sight loss involved in this disease.  Once I eliminated the vitamins in the compound that were for preventing cataracts (I’ve already had those removed from both eyes), I was still left with a bunch that might work and a doctor who didn’t know what they would do – if anything – to my kidneys.  I researched them one by one and discovered that only two would be safe for CKD patients.

Now, I don’t mean to whine (Wine? Does that affect the kidneys?), but this is a lot of work for each new product you want to use.  Sometimes even our nephrologists can’t tell us because the product is so new.  I’ve gone to the pharmacist with new products many times and, if they weren’t too busy, they would call the company that made the product immediately.  A call from a pharmacist seems to take precedence over a call from a consumer when it comes to inquiries.

I looked at the ingredients at the dental bleaching product I’d purchased and realized I would have to research them one by one.  The dentist wasn’t sure.  The nephrologist was out of town and I didn’t feel this necessitated a call from his covering doctor.  The pharmacy was very, very busy. (We don’t exactly have winter in Arizona, but we do have flu and cold season).

There are nine ingredients in the dental bleach product I chose.  One is water, so I didn’t research that.  I am not a doctor, never claimed to be one, and repeatedly reminded people that I am not one.  Apparently, my computer hasn’t gotten the message.  But, while I am not a doctor, I’m a terrific researcher.

warningHowever, in this case, I could not understand even one of the articles I found about the eight ingredients I didn’t know about.  This was extremely frustrating. So, I did what I probably should have done in the first place: I called the company.  They looked at the product information and assured me the product had no effect on the kidneys at all, but if I wasn’t comfortable with that, to contact my local pharmacist and/or my doctor.  I was willing to take their word for it (but I will call both the pharmacist and my nephrologist anyway.  Just to be sure, you understand).

Ah, the problems of being a chronic kidney disease patient… and we thought it was all about our doctors’ appointments, diets, sleep, stress levels, and exercise!

On the book front, yet another reminder for you that if you EVER bought a print copy of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease at any price from Amazon.com, you are now eligible for an electronic copy for $2.99.  That is a 70% savings over Book Coverthe usual price of $9.95 for the digital book.  And, yes, I did do that on purpose so that more people will have access to the information they need if they, a loved one, a colleague, or anyone they know and care about has Chronic Kidney Disease.  I can’t take credit for coming up with this Kindle MatchBook program just in time for your holiday shopping, however.  The accolades for that belong solely to Amazon.

SlowItDown is constantly on the lookout for new communities to bring our free Chronic Kidney Disease education taught by trained educators.  If you’re Black, you’re part of a high risk community.  If you’re Hispanic, you’re part of a high risk community.  Heck, if you’re over 60, you’re part of a high risk community!  Gather your friends and family and let’s get SlowItDown over to you so you can all rest a little bit easier by having an understanding of just what your disease means to you and your community.kidney-book-cover

Many, many thanks to Alex Gilman who was our host for Thanksgiving this year.  He made sure the turkey was cooked in a way that I could eat it and was extremely understanding when I forewent certain of the side dishes and of the small portions I chose.

We’ve got to remember it’s not easy for those who have no knowledge of Chronic Kidney Disease to understand why we eat the way we do.  I cannot even count the number of people who were downright insulted that I would do no more than taste what they’d made because the ingredients were not on the renal diet… and that’s after I’ve explained the renal diet!

MenorahTo those who celebrate, I hope you’re enjoying Chanukah.  Kwanzaa, a week-long celebration, won’t start until the day after Christmas, December 26.  I found this informative website for those of you who see me keep mentioning Kwanzaa, but really aren’t sure what it is: http://www.altiusdirectory.com/Society/kwanzaa-festival.php.  As you gear up for these two holidays or enjoy the last three days of Chanukah, consider helping out those with CKD via the book or contacting SlowItDown (ckded@cox.net) for them.

Until next week,

Keep living your life!

Did She Say Spaghetti?

new hometo Abby Wegerski on her first singly owned home!  I have enjoyed every second of helping her move, even the shopping. I got most of my exercise doing as much of the grunt work involved in moving in the last few weeks as I could.  While I was a little dismayed to discover it was only a fraction of what I thought I’d be able to do, it was still exercise. Nothing like packing boxes, schlepping (do you know the word?) boxes of flooring, or getting down on the floor to scrub carpet spots for a good workout.  So, Abby got into her new home and I got my exercise.  Sounds like a fair trade to me.

That’s the good; now the bad: Bear’s back is finally demanding his attention after years of being just painful as opposed to being overwhelmingly painful. Pollyanna over here found another way to exploit the situation.  He can’t do many of his chores, so I do them.  Wow, more exercise.  I considered writing about the ‘cocktail’ being injected into his spine in two places, but decided there wasn’t enough connection to Chronic Kidney Disease there. Here’s hoping they help him and my honey is out of pain soon.  I really wouldn’t mind getting my exercise from dancing, the stationery bike, or my walking tapes. Honestly, Bear!

So what will I write about?  I think you already know.  Dr. Wile has sent me the slide show with her wonderful visual analogies of how Chronic Kidney Disease works.  We may have to back up a little. You already know the kidneys do important jobs for your body, like filtering your blood every 30 minutes, “regulating the fluid balance in the body, providing vital hormones, producing erythropoietin (e.g.  this spurs red blood cell production), and producing the renin that regulates blood pressure.” The quote is from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease and the e.g. from the glossary of the same book.Book signing

There have been many attempts to explain how Chronic Kidney Disease impedes the kidneys’ abilities to do these jobs and all the others it is tasked with. The scientific explanation leaves me scratching my head.  Even as a research savvy person, there are too many terms to look up and then try to string the definitions together in some kind of coherent whole. The simplistic versions leave me frustrated that they don’t say much.  I’ve seen visuals that sort of help, but aren’t quite on the mark.

Dr. Wile thought of simply using a colander draining spaghetti as a visual.  Bingo! Even if you haven’t cooked spaghetti yourself, you’ve seen it cooked.  Colanders are common in the households of many different ethnic groups. The holes in the colander are akin to your kidneys’ nephrons. Those are the part of the kidneys that purify and filter the blood.  If a hole in the colander is closed off, or if your nephron is no longer functional, both the colander and your kidneys will not do the best job.  Close off more holes or nephrons and you will have even less filtering.  Hike up that number and the colander and kidneys become less and less effective.  You’ll end up with soggy spaghetti or Chronic Kidney Disease.colander

You can wash your colander for better straining.  You can’t do that to your kidneys. Once a nephron is dead, it’s dead. Sayonara, good bye, adios.  You can’t bring it back to life.  Before you panic, remember you have one million nephrons in each of your two kidneys. The name of the game here is: slow it down, slow down gathering those clogged holes in your colander, slow down the death rate for your nephrons.

I know it sounds like an impossible task but it isn’t. You may have to make life style changes (I am so tired of this hackneyed, but convenient term), such as no longer smoking and cutting down – or out – your drinking. You’ve got a renal diet or, at least, the name of the renal dietician the U.S. government is providing for you.  Call the number and make an appointment.  If you have your renal diet, read it, make certain you understand it, and follow it. What about sleep?  Are you making certain you’re getting enough? And then there’s the ever present exercise.  I say this to myself every, single ()*&*&*O_{{+ day: “Just do it!” Lately there have been studies that indicate stress can exacerbate CKD.  Find new ways to deal with that, ways that work for you.

There’s no one way to do any of the above, but the point is you’ve got to do it.  Sometimes it’s as annoying as… well, whatever is the most annoying thing you can think of, but it is so worth it.  I think one day one of my children may have a child of her own, or my novel will be published, or Bear and I will go to Alaska.  That’s all it takes to stop my moaning and groaning.  I want to be around for each of these possibilities, even though that’s all they are at this point.

This week is the birthday of our country.  I intend to get Bear the bar-b-q food he craves even though I can’t eat it.  Everyone in pain deserves some coddling.  And then we’ll celebrate by hiding in the house with Bella, who is terrified of fireworks, and have a Downton Abbey marathon.  Maybe we can’t do what we once did, but we can enjoy what we can do.  To the United States of America: happy birthday and thank you for paying for our CKD care.IMAG0269 (1)

Until next week,

Keep living your life!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,The Table

Keep living your life!

Eat And Be Well

Here’s hoping all you mothers – and fathers being both mother and father to your children – had a wonderful Mother’s Day. There are just too many such fathers to mention individually here.

I don’t know where the idea originated that you had to give birth to your children to be their mother, but I see examples every day of non-birth mothers being terrific mothers.  That one’s for you, sweet Sharon.

My step-daughter Kelly and her fiancé Sean made a Mother’s Day bar b q and invited her sister Lara, along with Lara’s love, my daughter Abby, and Bear and me.  That’s my kind of Mother’s Day.  The only thing that could have made it better is if my NY daughter, Nima, had been there.download

As usual, Sean asked me first how I needed my chicken seasoned and if the piece he had chosen for me was small enough. That kind of thoughtfulness is a given with this gracious man.  Alex brought the sweetest watermelon… something else I could eat.  Someone brought potato salad which I admit I had a teaspoon of “just to taste,” and someone else brought potato chips.  I had no trouble eating my limited permitted share of those.  Kelly even made a cup of coffee just for me.

I see today’s blog is going to be about food.  Keeping that in mind, I found this general guideline to healthy eating at: http://healthfinder.gov/HealthTopics/Category/health-conditions-and-diseases/diabetes/eat-healthy

The Basics

Your body needs the right vitamins, minerals, and other nutrients to stay healthy. A healthy diet means that you are eating:

  • Vegetables, fruits, whole grains, and fat-free or low-fat milk products
  • Seafood, poultry, lean meats, eggs, beans, peas, seeds, and nuts

Limit foods high in:

  • Cholesterol, sodium (salt), and added sugars
  • Tans fats – Trans fats may be in foods like cakes, cookies, stick margarines, and fried foods.
  • Saturated  fats – These fats come from animal products like cheese, fatty meats, whole milk, and butter.
  • Refined grains – Food products with refined grains include white bread, noodles, white rice, and flour tortillas

 

What I found interesting here is that what the general population is urged to eat is not that much different than what we early stage Chronic Kidney Disease sufferers are told to eat.  We do have to limit the fruits and vegetables to three different sized portions of each.  The portion depends on the particular fruit or vegetable. We also need to cap our limited types of seafood, poultry, lean meats, and eggs to five ounces per day.  As for seeds and nuts, those are no-no’s for us.

Look at the foods the government feels we should avoid.  Look familiar?  Take a look at the renal diet your nutritionist gave you and you’ll find them on that as foods to limit (or avoid), too.glycemic-index

You probably noticed the above information was taken from a website dealing with diabetes.  That’s because diabetes is one of the leading causes of Chronic Kidney Disease and vice-versa. That’s another reason to watch your intake of foods with a high glycemic index – the indicator of how quickly your blood sugar rises after eating the food – which includes not only what we usually consider sweets, but ice cream, too.

P1050446-1024x677You know we need to stay as healthy as possible, including keeping our weight down. One way to do that is NOT skipping breakfast.  Why?  This is how study researcher Dr. Tony Goldstone, M.D., Ph.D. of Imperial College London in the UK explains it:

“Through both the participants’ MRI results and observations of how much they ate at lunch, we found ample evidence that fasting made people hungrier, and increased the appeal of high-calorie foods and the amount people ate.”

You can read more about the study that led him to come to this conclusion at: http://www.medicalnewstoday.com/articles/251709.php

You need to understand that skipping breakfast (literally breaking the fast you incur while you sleep) is a form of fasting.  If you take medication that requires food along with it, you’re also delaying the effects of the medication since you’re not taking it until later in the day.

Here’s an interesting finding on a study publicized in The Journal of Renal Nutrition in 2009:

“Long-term fish consumption was independently associated with improved kidney function among elderly individuals, a finding that extends the current knowledge regarding the benefits of fish intake on human health.”

But we knew that, didn’t we?  Take a look at: http://www.jrnjournal.org/article/S1051-2276(12)00181-1/abstract for more, slightly technical, information on this study.

By the way, are you taking Omega 3 (fish oil) supplements?  There’s a theory it helps retard the progress of CKD. I’ll been taking it all five years since my diagnosis and I’m still at stage 3A.

While that’s something I would suggest – and please remember:  I’m not a doctor.  You need to run my suggestions by your nephrologist before you even think of acting on them! – something I will  caution you  about is grapefruit or grapefruit juice.  Let’s go back to Healthfinder.gov at: http://www.healthfinder.gov/News/Article.aspx?id=670988&source=govdelivery#.ULPppKAFqXI.twitter for the information about this: is

“Even small amounts of grapefruit or grapefruit juice have the potential to cause sudden death, acute kidney failure, respiratory failure, gastrointestinal bleeding and other serious side effects when paired with these medications. Included are certain cholesterol-lowering medications, blood pressure drugs, cancer treatments and antibiotics such as erythromycin, the researchers said.”

And star fruit (carambola)!! Avoid it at ALL costs, because the cost could be your life.  It is toxic to people with Chronic Kidney Disease.  It’s a tropical fruit so chances are you’re not going to run into it too often.  I am so glad I wasn’t adventurous enough to try it in Nigeria all those years ago.  My daughter, Nima, did try it when our Nigerian friends (Remi Okunoye and her children Moriyika, Oliaton, and Benga) were living with us back on Staten Island, but she immediately spit it out.  She was a young child, not used to the taste, and it was too strong for her. Now that she’s at risk for CKD since I have it, I’m glad she did that.is (1)

I took the following quote from an article beguilingly entitled It’s not just what you eat, but when you eat it: “When a species’ typical daily rhythm is thrown off, changes in metabolism also happen. For example, in people, night shift workers have an increased prevalence of obesity and metabolic syndrome, and patients with sleep disorders have a higher risk for developing obesity. Also, less sleep means more weight gain in healthy men and women.”  This is discussed more technically at: http://www.eurekalert.org/pub_releases/2012-11/uops-inj110612.php

Enjoy what you do feel safe eating – and there is quite a bit of that type of food available, you know.

Until next week,

Keep living your life.

Peeking At Transplantation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Whatever Happened To Integrity?

I have been thinking a lot about integrity – or the lack thereof – in today’s society.  I run into it constantly.

Bear spent part of his morning grumbling about it in his shop.  His machinery is well kept and maintained.  However, one of the machines is out of calibration for no apparent reason.  I didn’t understand it all, but it seems to be related to the shoddy way it was made.

I ran into a professional situation that reeks of lack of integrity.  We all know there are procedures to be followed in any job. In this situation, the people involved not only acted as if those procedures didn’t exist, they also caused great discomfort to others who were not part of the situation.

Then there are the people who are always telling you what they are going to do for you… and don’t.  Why bother?  If you’re not going to do it, why say you are?

Since this is a blog about chronic kidney disease, you’re probably asking yourself, “Okay, so what does this have to do with me?” You, or someone you know and love, just might be out of integrity with themselves about taking care of their ckd and keeping that GFR on the rise.    Book Cover

For example, both my nephrologist and my primary care doctor have been telling me for months that my A1c is too high. That’s the blood test that lets you know how your body is handling glucose over a three month period.  I politely nodded and said I’d work on it.

But I didn’t.  I was out of integrity with myself and, if I didn’t get right with myself, I was in for trouble in the form of diabetes. We all know how the combination of ckd and diabetes heightens your chances for some kind of cardiovascular event.

This time, I immediately transformed by ceasing to eat any sweets and cutting down my daily carbohydrate intake to between four and six units a day.  Think of a unit as a slice of bread or 1/3 cup of spaghetti.

Easy enough for her, you say?  Not so!  What I haven’t told you yet is that Bear has an incredible sweet tooth.  While he offered not to bring sweets into the house, I didn’t think that was fair.  He lives here too, and he doesn’t have chronic kidney disease.

The transforming part is that I don’t crave his sweets, even if he’s eating them right in front of me. I don’t think I’ve ever been like this before.

My downfall is usually the carbohydrates (I am the grand-daughter of a miller, you know!).  I have not gone over my limit once since I decided to become in integrity with myself. I’ve thought about it and decided it’s just not worth it. By the way, I got a little reward for this transformation: my weight dropped immediately and continues to drop.

exercisingMaybe it’s exercise for you.  Are you telling yourself that you’ll exercise tomorrow?  To borrow a line from Arthur Miller’s Waiting for Lefty  (which I was in a long, long time ago), “Tomorrow never comes for you.”  Is there some guilt in not doing what you need to for your health?  We don’t just need exercise because we’re human, we especially need exercise because we have chronic kidney disease.

Ah, maybe you’re one of those people who tell yourself you’ll get a good night’s sleep tomorrow night, or after you finish that good book, or another project.  Doesn’t work that way, folks.  You can’t make up for sleep you missed and we, as those who have ckd, need that sleep.

Or stress?  How about stress? I just gave my notice at a job I took because I loved it.  Thank goodness, I didn’t need the money, but I wasn’t ready to retire from this field yet.  The last month or so has been so stressful that even I noticed the black rings under my eyes and my inability to remember things clearly enough.

I had to make this right with myself.  Once I ascertained that another person could slip right into my place and made arrangements to give her the material she needed, I resigned.  Yes, I loved that job but my health is more important.  My supervisor is a person of integrity and completely understood the reasons for my resignation.

It may seem that I am making myself out to be a paragon of integrity, but all I’m really doing is providing you with examples from my life of how you can be in integrity with yourself in dealing with your chronic kidney disease.

On the book front, I remember writing that I had almost recouped the initial outlay to print the book but I forgot something.  This something came to my attention as I prepared my taxes.  I have donated over $1000 worth of books last year alone to doctors’ offices, clinics, nephrology associations, and kidney organizations.

Bear and I are marrying on April 6th of this year. Yay us! I’m going to ask each of you for a wedding present.  2012-12-12 19.41.37-1Buy a book and give it to someone you know can use the information in it or donate it to an organization that needs it. Digital copies are available on both Amazon.com and B&N.com.  Print copies are available on Amazon.com or via an email to me at myckdexperience.com.

What a day!  It’s almost 11 p.m. and the blog is still not finished.

Until next week,

Keep living your life!

 

The Flu: Part 3, The Last

martin-luther-king-jrToday is such a momentous day.  It is not only Martin Luther King, Jr.  Day, but the second inauguration of President Obama.  2013-01-21T024432Z_1452960950_GM1E91L0TCM01_RTRMADP_3_USA-INAUGURATIONAs I sit at my computer, I ruminate how far we’ve come in a relatively short amount of time.  I remember becoming aware of the Civil Rights Movement and crying when I watched fire hoses being turned on the crowds.  I remember how I wondered as a little girl why my friend’s skin was darker… and assumed she’d just been in the sun longer than I had.  And I remember the prejudice both of us experienced as we traveled in the rural south only forty years ago.  She is Black, but I am a Jew.

And now I wonder how to slide into a blog about chronic kidney disease.  There is no sedge way here. That’s all right, though, because we’re not exactly dealing with ckd today, but the flu instead.  I do promise that this will be the last blog about the flu (this year, that is).

I have just spent four uncomfortable days zapped of energy and not enjoying the movies I watched or books I read while enduring the flu. I was truly surprised at the OTC (over the counter) medications my nephrologist recommended to me.  Tylenol Cold?  A steady regime for four days?  This for a CKD patient who has taken six Tylenol in the last five years?  But that’s what the man said.

Dylsem Cough Suppression was another OTC he recommended.  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 think he didn’t hear me.) laced with whiskey. This for someone who doesn’t drink?

Now that I’m feeling better – even if I don’t sound better – I’m nervous about all this medication.  I carefully read each and every label.  Not a single one mentioned anything about possible kidney damage.

I think I’ve become accustomed to not taking OTC medication and I think that’s done me well. As I finished each bottle – especially the Tylenol Cold – I noticed I felt more alert, more aware of my body, and less… less what?  Tamped down?  Cocooned?  I don’t know the word, but I certainly feel more here.

Is it that the medications did their job?  Probably.  Is it that I got more sleep and rest than I have in quite a while?  Probably that, too.  But maybe, just maybe, my body doesn’t like more medications.  Sounds a bit hocus-pocus, but this is the same body that has slowly raised its GFR with careful guidance from me.

Would I take the flu shot again even though I got the flu after taking it this season?  Absolutely.  It was my misfortune to take the immunization for the wrong strain of flu this year. flu shot That’s never happened before, but then again, there haven’t usually been this many different strains of flu before in the same season.

Another reason is that this inoculation against  influenza also prevents heart attack and stroke.

“If you’re tempted to skip your flu shot, consider this: Getting vaccinated cuts risk for a heart attack or stroke by up to 50 percent, according to two studies presented at the Canadian Cardiovascular Congress.”  This is the lead sentence in Lisa Collier Cool’s Nov. 26, 2012 Yahoo Health article. You can read the whole article (and I urge you to.  There’s information here that was news to me.) at: http://health.yahoo.net/experts/dayinhealth/shot-prevents-heart-attacks

According to a Reuters’ Jan. 18, 2013 article, the number of flu cases is beginning to taper off but this has been a difficult year. We already know that.  Both Boston and New York State have declared Medical Health Emergencies. Look around you.  Are there people missing from your office?  Your school?  I noticed fewer people in the markets, too.

This same article talks about a dearth of Tamiflu.  Weren’t we told just last week that there was a shortage of the vaccine, too?  Do you see where I’m going with this? If you haven’t gotten your inoculation, get it.  If you have, but can’t find Tamiflu (not that everyone is prescribed Tamiflu), ask your doctor. No reason to panic.  Honestly, I sometimes wonder just how objective our news is.  Oh, the article.  It’s at: http://news.yahoo.com/flu-u-still-widespread-starting-ease-cdc-says-191406674–finance.htmlflu

A MedPage Today article offered some startling information on January 19th of this year: “A resounding 85% of 2,000-plus MedPage Today readers voted “yes” to our survey question asking if media attention promoted a “pseudo epidemic” as patients mistake cold symptoms for flu.” Did I do that?  Did you?  As someone who rarely becomes ill for more than a day at a time, did I simply not recognize a bad cold for what it is?

I couldn’t secure an appointment with my pcp (primary care physician) until this coming Wednesday – fully a week after I started to feel symptoms.  Will it be too late for her to tell the difference?  It’s an interesting article, although I’m not necessarily endorsing it.  Read it for yourself at: http://www.medpagetoday.com/InfectiousDisease/Vaccines/36924?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2013-01-21&eun=g596983d0r&userid=596983&email=myckdexperience@gmail.com&mu_id=5721543

As I read a New York Times article about the severe flu season (http://www.nytimes.com/2013/01/19/health/flu-season-worse-than-average-officials-say.html?smid=tw-nytimeshealth&seid=auto&_r=1&) from last Saturday, it occurred to me that when the media refers to the elderly, 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.  Hah!  Reality smacks me in the face again.

I could go on and on, but you’ve probably read a great deal yourself about the flu.the flu ends with you

As far as the book, I believe I have come close to paying off the initial cost of publication.  When you buy a book (Amazon.com, B&N.com, or DogEarPublishing.com), my profit goes right back into the book.  That’s what has allowed me to donate books to those who could not afford the book, were just diagnosed, and/or were somehow related to CKD patients.

As soon as I earn enough to pay off turning the book into an e-book , paying for the books I ordered to donate, and then translating it into Spanish (my next project), I intend to order more books to donate.

India, Malaysia, Pakistan, Turkey, Tunisia, the United Arab Emirates, Egypt, Saudi Arabia, Singapore, South Africa, The UK, Canada, Australia, Italy, Ireland, Germany, New Zealand, The Philippines, and Mexico, as well as the USA,  thank you.  Buy a book for yourself and help someone else who needs it.

Until next week,

Keep living your life.Book signing

Read, Read, Read

I’m a voracious reader.  I read everything: instructions, food labels, medicine bottles, research, fiction, non-fiction and my doctors’ notes.  In What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wrote about keeping a file for yourself for each doctor you see. 

                                    

                                     I began requesting copies of my doctor visit reports as well as my blood and urine tests so I could have my own file

                                     at home and stay on top of whatever I needed to. With these copies, my home files would be much more thorough.

                                     I was feeling burned by my previous P.A.’s failure to pick up on the low readings for the estimated GFR and felt I

 

                                     had to be my own case manager. I still do and find both the nephrologist and my primary  care

                                     physician  agree with me.

                                  

                                   Not a single doctor that I’ve seen for a test or a consultation has ever refused or been difficult about

                                   making certain I receive these copies. Most  (The one exception was a rheumotogist I encountered after

                                  the book was published who not only charged for these copies, but had me doing the telephone run

                                  around just to request them.) have encouraged me to keep my own, thorough medical files at home.  I

                                  suspect it may have made life easier for these doctors, too, since there was no calling other doctors to fax

                                  reports or requesting them from labs.  I had them and could fax them over to whichever doctor needed to

                                 see them immediately.

 

 I have been adding quite a bit to these files recently due to the cataract surgery, sleep apnea apparatus, allergies, biopsies, cryosurgery, and an asthma scare.  I have been a bit of a medical mess lately.  

Ever notice that things happen in threes? I’m beginning to think they may happen in sixes. At any rate, I began to doubt my own advice until I read the following articles. 

Opening MDs’ Notes to Patients Wins Support

By David Pittman, Washington Correspondent

Published: October 13, 2012

WASHINGTON — Patients who viewed their doctors’ notes reported feeling more in control of their care and practiced better medication adherence, a study showed.

You can read the rest of this one at:

http://www.medpagetoday.com/PracticeManagement/PracticeManagement/35298?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2012-10-15&eun=g596983d0r&userid=596983

I have to agree that I do feel more in control when I read the doctors’ notes. I’m also something of an overachiever, so I want to see my success at whatever was instructed – provided I understand it and agree with it – reflected in my doctors’ notes.

As for my doctors writing more clear and easily understood notes once they realized I would be reading them, well…. maybe it’s because they know I’m going to research that mine don’t do this.

Wait a minute; I used to spend quite a bit of time researching. It seems to me that I spend less and less time researching these days, but am not certain if that’s due to the growth of my knowledge base (Oh no!  I’m using my college instructor vocabulary in a CKD blog.  Talk about needing to write more plainly!) or if doctors really are writing in a way their patients can understand.

The other article that caught my eye was this one:

Medication beliefs strongly affect individuals’ management of chronic diseases, MU expert says

Health practitioners should use behavior-change tactics so patients take medications as prescribed

COLUMBIA, Mo. – Nearly half of patients taking medications for chronic conditions do not strictly follow their prescribed medication regimens. Failure to use medications as directed increases patients’ risk for side effects, hospitalizations, reduced quality of life and shortened lifespans. Now, a University of Missouri gerontological nursing expert says patients’ poor adherence to prescribed medication regimens is connected to their beliefs about the necessity of prescriptions and concerns about long-term effects and dependency.

The entire article is at: http://www.eurekalert.org/pub_releases/2012-10/uom-mbs101512.php

I readily accept that your beliefs dictate your behavior.  For example, my PCP was worried that I might be developing asthma and prescribed a steroid inhaler plus a daily allergy pill until I could see my immunologist.

She was being cautious, but the QVAR could cause oral thrush – a fungal condition – if I didn’t rinse my mouth and teeth carefully enough.  That was scary.  A medication that could cause another condition?

Hmmmm, it did allow me to breathe freely, though.  After a couple of weeks, I became even more uncomfortable since I believed I was developing a dependence on the QVAR. For once in my life, I didn’t research that.  I just stopped taking it.

When I did get to see my immunologist, I suggested stress might be causing the ferocious cough and the difficulty catching my breath afterward.  Not only did I have all these annoying medical problems I mentioned above, but my good buddy and my cousin died in the same week.  It was a rough patch in my life unlike any I’d experienced in the last twenty years.

My immunologist listened to me and suggested breathing exercises that might help since I wasn’t interested in any more pills or other medication.  At my request, she wrote the instructions for yoga breathing in her notes. And, of course, gave me a copy.

As for the article’s mention of mechanical reminders to take your medication, I still wouldn’t take medication if I didn’t agree with the purpose for taking it.  I do think I should have been more responsible and spoken to Dr. Zhao before I just stopped, but who says I was thinking clearly.

Bear uses the reminder on his phone whenever he needs to take a new medication (or cooks or times finish on his woodwork. He’s very clever that way.)  It works for him and he’s found some pretty interesting ring tones. If that method of reminder works for you, use it.  My meds are always meal based, so that triggers me to take the meds.

Here’s a laugh, sometimes I’m just not hungry but I know I have to have something in my stomach before I take my meds so I eat.  Can I blame all this excess weight on that?  Please?????

Until next week,

Keep living your life!

Let’s Sleep On It

I have been remiss. Thank you to Rick from RDM Concrete (602.695.1789) for laying the concrete under flooring for the library – and come to think of it –  the pad underneath the spa we moved here from Bear’s house.  AND, tada, to Tom and Mark from Tomark Contracting LLC (623.258.5800) for the library, including the handmade window seat.  I am so lucky to keep running into superior people who have delightful personalities and do excellent work. This includes house painter Felix W. Dukepoo and his crew (623.806.5266).

You simply have to give credit where credit is due.  You see you start, the next  person follows your lead, someone else follows their example  and so on and so forth until everyone in the whole world knows (s)he is appreciated.

Of course you’re wondering what this has to do with chronic kidney disease.  I mean I would be by now. Here’s the tie-in: I’ve been reading quite a bit about the importance of sleep with Chronic Kidney Disease. In addition, one of the first things my nephrologist mentioned – after hearing my schedule – when he discussed lifestyle changes was the importance of a minimum of eight hours of sleep per night.

If I’m crowded (you should have seen the hallways, the living room and the family room overflowing not only with books, but book cases.), worried that the 115 degree heat here is making my house paint chalk (which allows more heat in than normal) or wistfully thinking about the screened in porch I was no longer comfortable using (due to heat? CKD? Age?), I am not going to get a good night’s sleep. By the way, that porch is now the library.

These articles will make clear just how important that is. Keep in mind that you are already at higher risk for having a stroke simply because you have CKD.  Add diabetes and/or hypertension and that risk is heightened.

Lack of sleep increases stroke risk

By Janice Lloyd, USA TODAY [yesterday]

The 30% of working adults who routinely sleep less than six hours a night are four times more likely to suffer a stroke, says a new study.

The findings are the first to link insufficient sleep to stroke; they’re also the first to apply even to adults who keep off extra pounds and have no other risk factors for stroke, says Megan Ruiter, lead author of the report. It will be presented Monday at the 26th annual meeting of the Associated Professional Sleep Societies in Boston.

“People know how important diet and exercise are in preventing strokes,” says Ruiter, of the University of Alabama in Birmingham. “The public is less aware of the impact of insufficient amounts of sleep. Sleep is important — the body is stressed when it doesn’t get the right amount.”

Strokes occur when blood to the brain is restricted or cut off.  Stroke is still the fourth-leading cause of death in the USA. Smoking, being overweight and inactivity are key risk factors.

Notice chart from the Centers for Disease Control and Prevention.  You can read the entire article at: http://www.usatoday.com/news/health/story/2012-06-11/sleep-stroke-risk/55506530/1?csp=34news&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed:+UsatodaycomHealth-TopStories+(News+-+Health+-+Top+Stories)

The American Academy of Sleep Medicine seems to agree as noted in EurekAlert today:

Top risk of stroke for normal-weight adults: Getting under 6 hours of sleep

DARIEN, IL – Habitually sleeping less than six hours a night significantly increases the risk of stroke symptoms among middle-age to older adults who are of normal weight and at low risk for obstructive sleep apnea (OSA), according to a study of 5,666 people followed for up to three years.

After adjusting for body-mass index (BMI), they found a strong association with daily sleep periods of less than six hours and a greater incidence of stroke symptoms for middle-age to older adults, even beyond other risk factors. The study found no association between short sleep periods and stroke symptoms among overweight and obese participants.

“In employed middle-aged to older adults, relatively free of major risk factors for stroke such as obesity and sleep-disordered breathing, short sleep duration may exact its own negative influence on stroke development,” said lead author Megan Ruiter, PhD. “We speculate that short sleep duration is a precursor to other traditional stroke risk factors, and once these traditional stroke risk factors are present, then perhaps they become stronger risk factors than sleep duration alone.”

The entire article can be found at:  http://www.eurekalert.org/pub_releases/2012-06/aaos-tro053112.php.

Arizona Kidney Disease and Hypertension Centers is where I see my nephrologist.  Thanks is due to another  of their nephrologists for his continual outpouring of ideas for me.  That’s you, Dr. Jamal Atala. One of his ideas brought me back to Tamara Jensen at their main office in Phoenix.  Tamara is the person responsible for placing What Is It And How Did I Get It? Early Stage Chronic Kidney Disease at the very top of their patient resource list.  She is also the one responsible for implementing Dr. Atala’s suggestion of fliers in each of their 19 centers.  Thank you both! This is the flier:

What Is It and How Did I Get It? Early Stage Chronic Kidney Disease provides basic information for those diagnosed with kidney disease and their loved ones, covering everything from a glossary of medical terms to what to expect at a doctor’s visit, what tests look for, the need for exercise and renal nutrition. An overview of publications offers resources for further reading. In keeping with the spirit of letting newly diagnosed patients know they are not alone, the book describes other patients’ initial reactions to their diagnosis as well as the author’s own experiences.

Chronic Kidney Disease is not a disease that can be cured at this time. The idea is for the patient to retard the progression of the disease as much as possible. Hence, the renal diet, the need for exercise and all those oh-so-necessary blood and urine tests. Somehow, magically, when you understand something, it doesn’t seem as frightening. Helping you understand your diagnosis or that of a friend, family member or loved one and how the disease is treated is precisely what this book does. Knowing you’re not alone in trying to figure this all out can make it easier for you to understand what is happening to you and – possibly – why.

                                                                                                         

        Available in both print and digital at

    Amazon.com and BarnesandNoble.com

                                  Or

      contact Gail for an autographed copy

 

 

Phone: (623) 266-2609
Twitter: WhatHowEarlyCKD
Blog: https://gailraegarwood.wordpress.com
Email:
myckdexperience@gmail.com
Facebook Page:
facebook.com/WhatHowEarlyCKD

Until next week,

Keep living your life!

The Doctor Responds and More.

Happy Tuesday!  Have you ever woken up and just been glad you did?  All it took for today to be a day like that for me was to open the shade on the Arcadia door and let that Arizona sun pour in.  Wherever you are, I’m sending a bit of this feeling your way.

Dr. Marks, the author of the book that was reviewed Friday, sent me a response immediately.  I laughingly wondered if it truly were sent the second my post hit the screens.  While Dr. Marks sent it as a comment, I’m going to actually copy it here:

Submitted on 2011/02/11 at 5:50 pm

Hi, thanks for your review. Also, thanks for giving me the benefit of the doubt. As it turns out, I didn’t get your question, but I’d be happy to address that now.

Even for people with medical disorders that interfere with sleep, maintaining good sleep hygiene as discussed in chapter 6 is important.

I like your comment about common sense information. I tend to err on the side of assuming people know the things I know because it’s become so routine for me. Then when I see a new patient who is doing lots of stuff to sabotage their sleep, I’m reminded that these tips may be intuitive, but that doesn’t always translate to common practice.

So attending to sleep hygiene – all aspects of it as best you can, specifically helps the chronic kidney sufferer.

Next, if a person progresses to have other medical complications such as chronic fatigue, pain or depression, the sufferer should consider sleeping medication. Chapter 5 discusses the different medication options and this information can help you make an informed choice when you talk to your doctor.

As you know, people on dialysis can develop insomnia due to sleep apnea. I only discuss sleep apnea briefly in the book. The book is really designed to be a self-help tool. Since sleep apnea requires professional help, I did not elaborate much except to give information on the symptoms, the sleep study that diagnoses it and treatment options.

Lastly, although I’m a proponent of not taking medications when you don’t need to (even though I’m a medical doctor), I believe those with chronic medical conditions are just the population of people who need sleeping medication long term.

That said – medications don’t always work all the time. Many of them loose their effectiveness. So anything you can do behaviorally to help your sleep is advantageous. All this to say, I also think the section on sleep restriction would be helpful to the person with chronic kidney disease who has broken sleep all through the night DESPITE being on sleeping medication.

One more thing, people with kidney disease can end up with day-night reversal where they are up all night and sleeping during the day. This can really get in the way of doctors appointments, dialysis if applicable, and other life commitments. This is where light therapy that I discuss in Chapter 8 may be extremely helpful. Bright light has a powerful effect on the body clock and helping people sleep at the right times.

More recent research that postdates the book supports the use of light boxes also for non-seasonal depression. This is exciting to me because it’s possible the light therapy can not only help regulate one’s sleep but lift the depression that kidney disease sufferers can develop.

Okay, I think that’s it. Thanks for the question!

And thanks to Dr. Marks for her quick response once she did receive the question.

On another issue, I received another comment from Miko Aguillera at
kidney-problems.com.  When I explored the site, I found it informative about quite a few different types of kidney problems, just as the name suggests.  However, there is a large advertisement on the home page for a kidney healing product.  I am not endorsing the product, nor do I know anything about it.  It might be interesting to take a look at the page if you keep that in mind.

How nice that today’s post seemed to write itself.

Until Friday,

Keep living your life!

Published in: on February 15, 2011 at 8:41 am  Leave a Comment  

Book Review

It’s book review day.  If you remember (and even if you don’t), I’ll be reviewing Dr. Tracey I. Marks’s Master Your Sleep: Proven Methods Simplified. Unfortunately, Dr. Marks did not get back to me before today to answer my question about how her book specifically applies to early stage Chronic Kidney Disease sufferers.  Ordinarily, that would make me think twice about reviewing her book, but it is possible that she intends to send me that e-mail at a later date.  I’m willing to give her the benefit of the doubt.

According to her biography on the back cover of the book: “Tracey Marks, MD is an Atlanta psychiatrist and psychotherapist who has a special interest in how the mind and body connect to shape our quality of life.  Dr. Marks has worked with numerous women struggling to balance their life and work, while also overcoming burnout, depression and other stress-related issues.

Dr. Marks obtained her undergraduate degree from Duke University and her medical degree from the University of Florida.  She completed her residency training at The New York Presbyterian Hospital, Cornell Medical Center.”

Now that we know who the author is, a discussion of what the book contains is in order. I won’t go into too much detail, even though I know I can’t spoil a non-fiction by telling too much because this is only a review, not a book report which would tell you a great deal more (Aha!  Snuck in a little bit of teaching writing there, didn’t I?)

Dr. Marks starts us off with the basics: facts about sleep, what happens if you don’t sleep, why you can’t sleep (if you can’t), and who might need which sleep disorder evaluation.  She effortlessly moves into sleep solutions such as medications, and different kinds of therapies: behavioral, cognitive, and bright light.  The doctor also includes a chapter on sleep disorders in children and a final, summary chapter to pull together the information in the previous chapters.

She has thoughtfully included many tables, such as the sleep needs by age and the caffeine concentration in foods tables among others.  In addition, Dr. Marks has included copies of both parts of the sleep diary she writes about, the assumption log and the problem-solving worksheet which are also down loadable from the website mentioned in the appendix.

The book itself is appealing in that it’s printed on non-gloss paper and the cover is in muted colors.  Most interesting to me was her simple analysis of what was (for the most part) a common sense approach for falling and staying asleep.  I had to re-evaluate the common sense part of that sentence when I realized it took me decades to make this material “common sense” for myself.

As Chronic Kidney Disease patients, we’d be particularly interested in her discussion of how much fluid the bladder holds, how full it needs to be before we feel the urge to urinate, how long different fluids take to pass through our bodies and how to avoid numerous wake-ups to urinate. The following is from that discussion: “Your kidneys will continue to filter your blood overnight but at a much slower rate than during the day.”

A really nice touch was the “Master Your Sleep Cheat Sheet” that is inserted in the book.  You don’t even have to tear it out. It is sturdy, portable and quite clear cut.

While I would not necessarily make this book my sleep bible, I did find it helpful.  I’ve already tauted some of its wisdom to friends and family who needed the information.

Enjoy the book, if you decide to read it.  I’m fairly certain you can email her questions of your own via her website which is mentioned in the book.

It’s Friday, the sun is shining (here) and the dog is barking which means someone is at my door. I have a door bell, but she’s better than a door bell.

So, until Tuesday,

Keep living your life.

Published in: on February 11, 2011 at 11:50 am  Comments (4)