Sex?

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

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

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

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body. Or maybe it’s leaky blood vessels. Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones….

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

Women with CKD may also suffer from sexual problems, but the causes can be complicated. As with men, renal disease, diabetes and hypertension may contribute to the problem. But so can poor body image, low self-esteem, depression, stress and sexual abuse. Any chronic disease can make a man or a woman feel less sexual….

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

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too. And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Communicate with your partner or others about how you feel.

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

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

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

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

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

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

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

Until next week,
Keep living your life!

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Book It!

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

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

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

This is what he wrote for us:

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Shocked

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

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!

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!

Medical Individuals

FullSizeRender (2)We all know I write about Chronic Kidney Disease, or CKD, but just what is that? When I wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease six years ago, I defined CKD as “Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.” Although I’m not so sure about that “cannot be reversed” any more, this is simple, right?

Well, not exactly. Over the years, many readers have pointed out that they have another form of kidney disease. According to University Kidney Research Organization (UKRO) @ http://ukrocharity.org/kidney-disease/different-types-of-kidney-diseases/, these are all considered kidney disease:

Wait a minute. Chronic means of long duration. Then with the exception (hopefully) of kidney stones, these diseases can all be classified as CKD… but are they when it comes to treatment?

Dr. Joel Topf is a nephrologist who writes a blog of his own (Precious Bodily Fluids @pbfluids.com) and is a member of the eAJKD Advisory Board at American Journal of Kidney Disease. He must make great use of his time because he has helped develop teaching games for nephrology students and has written medical works. (Yeah, I’m impressed with him, too.)

He’s also a Twitter friend. He contacted me the other day about an article in the Clinical Journal of the American Society of Nephrology entitled “The CKD Classification System in the Precision Medicine Era,” which was written by Yoshio N. Hall and Jonathan Himmelfarb. You can read it for yourself on their site, but you’ll need to join it and get yourself a user name and password. I didn’t. Joel sent me the copy I needed.

cjasn

My first reaction to his request was, “Sure!” Then I read the article and wondered if I could handle all the medicalese in it. Several readings later, I see why he asked me to write about it.

I say I have CKD stage 3B. You understand what I mean. So does my nephrologist. That’s due to the KDOQI. As I explained in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, this is The National Kidney Foundation Kidney Disease Outcomes FullSizeRender (3)Quality Initiative which was not put into place until 1997 and then updated only five years later in 2002. It introduced stages and put CKD on the world medical map. By the way, the 2012 revised guidelines helped raised awareness of CKD according to the CJASN article: “…from 4.7% to 9.2% among persons with CKD stages 3 and 4 in the United States ….”

But something is missing. How can my stage 3 CKD be the same for someone who has, say, Nephrotic Syndrome? We may have the same GFR, but are our symptoms the same? Is the progression of our illnesses the same? What about our treatment? Our other test results?

Whoops! A certain someone looking over my shoulder as I type reminded me I need to define GFR. I especially like Medline Plus’s definition that I used in SlowItDownCKD 2015:

“Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes IMG_2980through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.”

I know, I know, I didn’t explain what “the Precision Medicine Era” is, either. According to the article, “The underlying concept behind the Precision Medicine Initiative is that disease prevention and treatment strategies must take individual variability into account.” Actually, President Obama first used the term in his State of the Union Address last year.

Alrighty now, back to why CKD staging is not necessarily precision medicine. It seems to center on one phrase – individual variability. I was diagnosed at age 60. I’m now almost 70. Where is the age adjustment in my treatment plan? Is there one? What about when I’m 80? 90? We know the body reacts differently to medications as we age. Is my nephrologist taking this into account? Is yours? I’m taking liberties with the definition of individual here; I don’t think the authors meant within the individual, but rather amongst individuals.

I check my husband’s blood test results for his GFR. FOR HIS AGE, he does not have CKD. But here’s another point I’ve been ranting about that’s brought up in this article. Many elders (Oh my! We’re in that category already.) are not being told if they have stage 1 or stage 2 CKD because their doctors age adjust and so don’t consider the results CKD. We’re getting a little esoteric here. Is CKD really CKD if you’ve age adjusted your GFR readings?

My brain is starting to hurt and I haven’t even written about the different diseases yet, although I did allude to them earlier. What impressed me most in this article is this (in discussing four different hypothetical patients): “Each would be classified as having stage 3 CKD with approximately the same eGFR, but it is patently obvious that virtually every aspect of clinical decision making … would greatly differ in caring for these four individuals.”

I have to agree in my layman way. I’m not a doctor, but I know that if you have Polycystic Kidney Disease and I don’t, although our GFR is the same, I cannot receive the same treatment you do and you cannot receive the same treatment I do. Yes, they’re both kidney diseases and both chronic, but they are not the same disease despite our having the same GFR.

stages of CKDThere is no one size fits all here. Nor does there yet seem to be precision. My CKD at 70 is not the same as it was at 60. If I had diabetes, my CKD treatment would be different, too.  I do have hypertension and that has already changed my CKD treatment.

This got me to thinking. How would every nephrologist find the time for this individualized treatment for each CKD patient? And what other tests will each patient need to determine treatment based on his/her UNIQUE form of CKD?IMG_2982

Thanks for the suggestion, Dr. Topf. This was worth writing about.

Until next week,

Keep living your life!

 

Starting My Day

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

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

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

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

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

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

red-meat-chart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Still Getting Birthday Gifts… like OAB

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

IMG_1398

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

Until next week,

Keep living your life!

Good Enough 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

To Wash or Not To Wash

Peggy Rickard belongs to the same Landmark Worldwide Center (an international personal and professional growth, training and development landmarkqrcompany) as I do here in Arizona.  I didn’t know her, but she wanted to perform a service project for one of her Landmark courses and she wanted it to deal with the kidneys. The manager of the center – the ever affable Philip Rand – knew I did “something with kidneys,” so he asked if I would call her.  When I did, it turned out that she has a medical advocacy business, but that had nothing to do with her project.

We had a wonderful conversation.  Here was someone in one of my other communities who spoke my kidney language. Peggy had already contacted The National Kidney Foundation of Arizona and learned from Dr. James Ivie, the Director of Patient Services, that what was really needed was to have the information leaflets about kidney disease and donation translated into Spanish since Hispanics are at a higher risk for kidney disease.

Kidney ArizonaMaybe I can pick out a few words of Spanish here and there, but she needed more. I couldn’t translate the leaflets into Spanish for her and didn’t know anyone who could.  That night, I went to the center for the completion session of The Wisdom Unlimited course in which I had been participating. In a greet-those-you-don’t-know moment, I spoke with Nathaniel (Nat) Garcia II – since he was the person directly in front of me – only to discover he is a missionary… and fluent in Spanish…and more than willing to do the translations.  Problem solved.

That got me to thinking about language. While taking a shower the next morning, the bottle of shampoo I was using caught my eye. It had the words ‘sulfate free’ in large letters on the label.  Hmmm, sulfate looks a lot like sulphur.  Are they related?

After checking a bunch of dictionaries, I decided to use the definition of The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/sulfate since it seemed the simplest to understand.

“a salt of sulfuric acid”

Uh-oh, sulfuric means made of sulfur. Although the spelling may be different, sulfuric acid is highly corrosive. It’s also a mineral… and is used in both waste water treatment and fertilizer creation. Why would shampoo have this as an ingredient in the first place?shampoo

I figured the best person to provide an answer would be a hair stylist so I read Melissa Jongman’s article on http://hubpages.com/style/Sulfates-Are-they-damaging-your-hair-Why-to-opt-for-a-sulfate-free-shampoo

“Sulfates are detergents used to make the shampoo lather. They’re inexpensive to use in shampoos, which explains why more than 90% of shampoos contain them. The most common sulfates used in these shampoos are:

  • Sodium Lauryl Sulphate (SLS)
  • Sodium Laureth Sulphate (SLES)
  • Ammonia Laureth Sulphate (ALS)
  • TEA Lauryeth Sulfate (TEA)
  • Sodium Myreth Sulphate (SMS)”

This was not looking good.  Sulphur is something we, as Chronic Kidney Disease patients, need to avoid. As I explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, sulphur can further damage your already damaged kidneys.

Book CoverSo what can we do?  Not washing our hair is obviously not the answer. I googled shampoos without sulfates and came up with a list of 43 at http://sulfatefreeshampoos.org/sulfate-free-shampoo-list/#list. While the latest edit of this list was during this new year, I am not familiar with the editors nor the products. However, you can safely bet that I’ll try them.

Let’s go back to why sulfates are not good for CKD patients for a minute. I stumbled across a CKD education site called quizlet.com. Perusing this site, I found the statement that

“Very late CKD is due to reduced excretion of sulfates and phosphates.”

Of course! That makes perfect sense: as our kidney function declines, we are not excreting as much of these substances as we did before we were lucky enough (ouch!) to develop CKD and they build up.  That’s CKD 101.

A nervous me decided to see what other beauty or health products used sulfates. I discovered it’s used in body wash (Wait! Isn’t sulfate a skin irritant?), toothpaste, and nail polish. That tripped a thought. Didn’t I blog about that?

I used the search function on the blog only to find that that blog dealt with other chemicals in nail polish.  (Gritting teeth and crying out in anguish) Is nothing safe anymore? All right, pick a chemical… any chemical.

Looking at the ingredients in both hair products and nail polish, I chose phthalates. The Centers for Disease Control and Prevention (CDC) at http://www.cdc.gov/biomonitoring/Phthalates_FactSheet.html helped us out with this one:chemistry

“Phthalates are a group of chemicals used to make plastics more flexible and harder to break. … They are used in hundreds of products, such as vinyl flooring, adhesives, detergents, lubricating oils, automotive plastics, plastic clothes (raincoats), and personal-care products (soaps, shampoos, hair sprays, and nail polishes)….

How Phthalates Affect People’s Health

Human health effects from exposure to low levels of phthalates are unknown. Some types of phthalates have affected the reproductive system of laboratory animals. More research is needed to assess the human health effects of exposure to phthalates.”

Maybe the human health effects are unknown and maybe this passes quickly via the urine, but if you have Chronic Kidney Disease, you are not filtering your blood as well as other people.  Why take a chance of making it worse?

Now that I’ve probably made you fearful of using any beauty product on the market, be aware that there are many products without phthalate. Breast Cancer Action (Yes, there seems to be a connection between breast cancer and phthalates.) at http://www.bcaction.org/our-take-on-breast-cancer/environment/safe-cosmetics/phthalate-free-cosmetics/  offers a list of companies which produce phthalate free beauty aids.

DIGITAL_BOOK_THUMBNAILDigital Cover Part 2 redone - Copy

Let’s talk about service and gratitude for just a minute.  While I’ve always believed in service, it’s only since I’ve been diagnosed with Chronic Kidney Disease (way back in in 2008) that I’ve become aware of how very thankful I am for the little things in life – like spreading CKD Awareness by writing this blog, posting some CKD tidbit on Twitter daily, starting an Instagram account for SlowItDownCKD, and offering my books.  Thank YOU for being the readers.

Until next week,

Keep living your life!

Electronically Speaking

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

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

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

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

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

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

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

British Kidney Patient AssociationGFR

Chronic Kidney Disease Support Group

Dialysis & Kidney Disease

GM Kidney Information Network

I Hate Dialysis

kidneys5Kidney disease isn’t for sissies

Kidney Disease, Dialysis, and Transplant

MANI TRUST

People on dialysis

Renal Patient Support Group

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Put your Back into It for a Few Minutes

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

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

“Fibrocartilaginous material between spinal vertebrae which

 provides a cushion-like support against shock”

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

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

“Cartilage that consists of dense fibers.”

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

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

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

Our what?  Vertebrae is

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Just Breathe

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!Book Cover

SlowItDown More

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

I Showed You Mine, Now Show Me Yours

Bear and I are going to be married on April 6th. It will be a simple ceremony in our back yard under the magnificent palo verde tree (which I hope recovers from the recent freeze to be magnificent again very, very soon). We each have two daughters and one has a fiancé.  Add Bear’s best friend and you have our wedding party. Reverend Doctor Mitzi Lynton of Creative Living Fellowship will be officiating.  Simple, sweet, and to the point.

I don’t see how that will change anything for us since we’ve been together – and loving it – for years.  Well, there will be a thin white gold band under my engagement ring. Oh, and I’ll add Garwood as a hyphenate to Gail Rae. Wait, Bear will wear a wedding band, as yet unchosen, too.  But that’s it.  Or is it?

I’m starting to wonder what my chronic kidney disease – newly diagnosed as stage 3A or the beginning part of stage 3 – means to our life together. Bear is already wonderful about sharing meals with me when we go out and being sure to order only what I can eat.  He even picks up my exercise habit every so often and accepts that I get tired for no reason (hah!) sometimes. But I suspect there’s more.

According to The Journal of the American Society of Nephrology (JASN), a new study reveals your lifetime risk of developing kidney failure:

Approximately 1 in 40 men and 1 in 60 women of middle age will develop kidney failure if they live into their 90s.

People with reduced kidney function face an even higher risk.

Kidney failure is on the rise and currently afflicts 2 million people worldwide.

You can read the EurekAlert! notice about this article for yourself at: http://www.eurekalert.org/pub_releases/2012-08/ason-wyl081012.php

I’m a person with reduced kidney function.  So I face a higher than 1 in 60 women risk for kidney failure.  Not on your life!!!  Or maybe I should say my life.

I’m perfectly capable of keeping that heightened risk at bay and I intend to.  I have so much to look forward to. Obviously, we won’t be starting a family(That would be one for Ripley’s Believe It Or Not).  But there are daughters, lots of daughters, and they may choose to someday. 

Abby is starting her new job today.  I wouldn’t have missed that for the world.  How many better and better positions is she going to find in her career?  Kelly and Sean will have their own wedding next year and I’ll be there.  I want to see more of Nima… New York isn’t that far away. And Lara, how will she choose to have her life develop?

So, you ask, “How will you do that, Gail?”  I’ll educate myself about chronic kidney disease even more, that’s how. 

These are the groups I follow on twitter that have information to help me (and you):

Am Soc Nephrology‏@ASNKidney  –  ASN: Leading the Fight Against Kidney Disease.

American Kidney Fund‏@KidneyFund  –  The American Kidney Fund fights kidney disease through direct financial support to patients in need, health education and prevention efforts.

DaVita@DaVita  –  Giving life to dialysis patients. Creating #kidneyaware communities. Cultivating leadership with #DaVitaU. Living our core value of fun.

Joel Topf‏@kidney_boy  – Salt whisperer, nephrologist, runner, blogger and editor of @kidometer. Interests: teaching, medicine, electrolytes, CKD, and all things Apple#FOAMed advocate

Kidney Foundation‏@ChattanoogaKF  –  To provide help and information to those affected by kidney disease.

Kidney Foundation@kidneycanada  –  The Kidney Foundation of Canada is the national volunteer organization committed to reducing the burden of kidney disease.

Kidney Research UK‏@Kidney_Research  –  Right now, over 3 million lives in the UK are affected by chronic kidney disease. Please support Kidney Research UK.

KidneyDiet®‏@KidneyDietApp  –  An App to help you watch the 3Ps. Phosphorus. Potassium. Protein. CKD, ESRD, dialysis – whatever your situation, now make better diet choices w/ KidneyDiet®.

KidneyMI‏@KidneyMI  –  The mission of the National Kidney Foundation of Michigan is to prevent kidney disease and improve the quality of life for those living with it.

Libre, LLC‏@LibreClothing  –  A clothing company for chemotherapy, dialysis, & other infusion patients; making everyone’s day a little more Libre!

Mostly Medical Links‏@MostlyMedLinks  –  Interesting medical news and links via @JoshuaSchwimmer, a nephrologist.

NKF of Hawaii‏@KidneyHI  –  National Kidney Foundation of Hawaii

NKF Upstate NY‏@NKF_UPNY   –  The National Kidney Foundation Serving Upstate and Western New York

NurseGroups  – The social career resource for nurses. Tweeting daily nursing and health news. #TeamNurses

NYTimes Health‏@nytimeshealth  –  Health news from the Science desk of The New York Times

Renal Info‏@renalinfo  –  Baxter is a diversified company that develops & manufactures products that save and sustain the lives of people with kidney disease and other medical conditions

RenalFellowNetwork‏@RenalFellowNtwk  –  A website written for renal fellows, by renal fellows.

RenalSupportNetwork‏@RSNhope  –  Renal Support Network is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease.

RNCentral.com‏ @RNCentral  –  Nursing education, news, and healthy living tips

NKF_Advocacy‏@NKF_Advocacy  –  Join the National Kidney Foundation’s advocacy movement for people affected by chronic kidney disease, organ and tissue transplant and donation!

RWJF PublicHealth‏@RWJF_PubHealth  –  RWJF’s public health program area. We want to make staying healthy less costly and improve quality of life for all Americans. http://www.NewPublicHealth.org

The Kidney Group‏@thekidneygroup  –  Consistently voted Top Nephrology Practice in So Florida, we bring you kidney and related health news with commentary by our board certified nephrologists.

World Kidney Day‏@worldkidneyday  –  World Kidney Day’s objective is to raise awareness globally of the importance of Kidney Health and to increase screening for chronic kidney disease

You’re probably thinking, “Oh, so many different National Kidney Foundation addresses,” but each one has different, interesting, and (most importantly) helpful information pretty much on a daily basis.  Did I miss any?  Which do you follow that I haven’t listed here?

I’m making this journey and I’m going to enjoy it.  More information about ways to prolong it will certainly help.  I showed you mine.  Now show me yours.

Until next week,

Keep living your life!

My Turn For A Biopsy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is exhausting writing about your own health issues!

Until next week,

Keep living your life!

National Kidney Month And Doctors Who Get It

Yesterday, day four of National Kidney Month, my buddy Karla and I met at the Herberger – our state theater – to see a play I knew nothing about.  For me, it was just an excuse to get together and see a friend of hers onstage.  The play, “Dead Man’s Cell Phone,” turned out to be about what happens to a trafficker in human organs and the people he’s connected to after he dies. Naturally, I want to play the role of his mother in some other production of this play. It’s an odd-ball role, right up my alley.

But what really struck me was that I unwittingly chose to attend a play about kidneys during National Kidney Month.  At the talk with the actors after the play, I mentioned that.  Not one person in the theater (and it was half full of people who stayed for the talk) knew this is National Kidney Month.

That’s why I’ll be posting something about the kidneys on Twitter every day this month.

I’ll also be guesting on a radio show for this purpose tomorrow night, Tuesday March 6th from 7:30pm – 9:30pm EST. The URL for this is:
http://www.blogtalkradio.com/onlinewithandrea/2012/03/07/early-stage-chronic-kidney-disease

And I’ll be at The Kidney Foundation’s 21st Annual Chattanooga Renal Symposium on March 29th, 2012.  The event will be held at the Historic Sheraton Read House. If you’re anywhere nearby,  I’ll be in the vendors’ area with 200  nephrologists milling around.  Come say hello.

This month a specific nephrologist and I will be exploring selling our books as a set, one book written by the doctor and one written by the patient.

I’m doing my bit for National Kidney Month.  What can you do?

World Kidney Day is Thursday, March 8.  I expect there to be all kinds of symposiums, conferences and information booths available to you that day.  Why not bring a friend who doesn’t know much about Chronic Kidney Disease and the need to be tested for it to one of these?

We patients are not the only ones trying to be aware.  This New York Times article can give us some insight into what some of our doctors are doing to stay aware.

Teaching Doctors to Be Mindful

By PAULINE W. CHEN, M.D.
Doctors from across the world gather at the Chapin Mill Retreat Center in Batavia, N.Y. to bring intention, attention and reflection to clinical practice.Brett Carlsen for The New York TimesDoctors from across the world gather at the Chapin Mill Retreat Center in Batavia, N.Y., to bring intention, attention and reflection to clinical practice.
It was 6:40 in the morning and nearly all of the doctors attending the medical conference had assembled for the first session of the day. But there were no tables and chairs in sight, no lectern, no run-throughs of PowerPoint presentations. All I could make out in the early morning darkness were the unmoving forms of my colleagues, cross-legged on cushions and raised platforms, eyes closed and hands resting with palms upward in their laps.

They were learning to meditate as part of a mindful communication training conference, held last week at the Chapin Mill Retreat Center in western New York, and sponsored by the University of Rochester Medical Center.

There has been a growing awareness among doctors that being mindful, or fully present and attentive to the moment, not only improves the way they engage with patients but also mitigates the stresses of clinical practice.

Mounting paperwork demands and other time and productivity pressures can lead to physician burnout, which affects as many as one in three doctors, recent studies have shown. The loss of enthusiasm and engagement that results can lead to increased errors, decreased empathy and compassion toward patients and poor professionalism. Other problems include physician substance abuse, abandonment of clinical practice and even suicide.

Despite the pervasiveness of burnout, few interventions have been shown to be effective. But two years ago, University of Rochester researchers studied the effects of a yearlong course for practicing primary care physicians in mindful communication. Their findings, published in The Journal of the American Medical Association, showed that doctors who took part in the course became more present, attentive and focused on the moment and less emotionally exhausted over time. Moreover, the doctors’ ability to empathize with patients and understand how patients’ family and work life or social situation could influence their illness increased and persisted even after the course had ended.

“Mindful communication is one way for practitioners to feel more ‘in the game’ and to find meaning in their practice,” said Dr. Michael S. Krasner, an associate professor of clinical medicine at Rochester and one of the study authors. He, along with his co-author Dr. Ronald Epstein, a professor of family medicine, psychiatry and oncology at Rochester, developed the course in mindfulness.

But it takes training, and that training can be particularly challenging for physicians who are used to denying their personal responses to difficult situations. In addition to learning to meditate, doctors participate in group discussions and writing and listening exercises on topics like medical errors, managing conflict, setting boundaries and self-care. Small group discussions are meant to increase awareness of how one’s emotions or physical sensations influence behaviors and decisions.

In one exercise, for example, doctors are asked to write about a mistake in their professional or personal life. Examples of such errors have included missing a diagnosis, prescribing the wrong medication, making assumptions about a patient that led to inadequate care or failing to be present for their own families because of an inability to balance work and family life. The doctors must then discuss the issue with two peers, describing not only the event but also any associated physical and emotional sensations. One of the other doctors has the task of practicing appreciative inquiry, or listening without making judgments or jumping to conclusions. And the other serves as an observer, offering suggestions at the end of the session for how the listener might improve his or her skills.

Many of the participants at last week’s conference, capped by the organizers at 40 and coming from the United States and Canada and from as far away as New Zealand, described the four-day experience as “transformative.” “I can honestly say that these have been some of the most important days of my life,” said Dr. Elissa Rubin, a pediatrician and lactation consultant who traveled to the conference from Mineola, N.Y., on Long Island.

But the real challenge for these participants — and the growing number of advocates of such training — is not acquiring mindfulness. It is finding the time and support necessary to sustain their skills and teach others.

Once back in their work environments, many say it is easy to fall back into old patterns. Dr. Krasner and Dr. Epstein have had to close down some of their programs directed at interns and residents because of financial issues. And a frequent topic of conversation among several of last week’s participants who hoped to teach at their own institutions were how to best introduce these ideas to colleagues who might be skeptical or administrators who might be hesitant to set aside valuable clinical time for training courses or pay for a program that does not generate revenue.

Nonetheless, Dr. Krasner and Dr. Epstein remain optimistic, in large part because they believe that mindful communication is not just another optional skill or fringe fad in health care. “Mindfulness,” Dr. Epstein said, “and the self-awareness it cultivates, is a fundamental ingredient of excellent care.”

Their patients would agree. In clinic, a patient who has suffered for years from chronic pain told me why he remained Dr. Epstein’s patient. “He’s the best doctor I’ve ever had because he can get to what I am trying to say quicker than any other doctor.

“I’m not sure how he does it, but he just really gets it.”

You can view the original article at: http://well.blogs.nytimes.com/2011/10/27/teaching-doctors-to-be-mindful/?smid=tw-nytimeshealth&seid=auto

Until next week,

Keep living your life!