Two Masters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

The Other Side of the Coin

Here’s hoping everyone had a wonderful Father’s Day. During our relaxed celebration for Bear, I found myself ruminating about how many times we’ve celebrated this holiday for fathers no longer with us and how many more times  we would be able to celebrate it for the fathers who are. They are aging. Wait a minute, that means their kidneys are aging, too.

Yep, that meant a new blog topic. We already know that kidney function declines with age. According to the National Kidney Foundation at https://www.kidney.org/blog/ask-doctor/what-age-do-kidneys-decline-function, “The general ‘Rule of Thumb’ is that kidney function begins to decline at age 40 and declines at a rate of about 1% per year beyond age forty. Rates may differ in different individuals.” 40?

Well, what is a perfect kidney function score… if such exists? Back  to the NKF, although they call this a ‘normal’ not ‘perfect’ GFR, this time at https://www.kidney.org/atoz/content/gfr:

In adults, the normal GFR number is more than 90. GFR declines with age, even in people without kidney disease.
Average estimated GFR
20–29     116
30–39     107
40–49     99
50–59     93
60–69     85
70+         75

Got it. So even for a normal 70+ person, I have CKD with my 50ish GFR.

It seems I’m getting a bit ahead of myself here. I haven’t defined GFR yet. Let’s take a gander at What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for that definition,

“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.”

No, that won’t do. I think we need more of an explanation. This is from 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 through  the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

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

Okay, I think that’s clear now. However, that’s not what I wanted to know. This is – if kidney function already declines with age, does having CKD age us more quickly?

Premature aging is a process associated with a progressive accumulation of deleterious changes over time, an impairment of physiologic functions, and an increase in the risk of disease and death. Regardless of genetic background, aging can be accelerated by the lifestyle choices and environmental conditions to which our genes are exposed. Chronic kidney disease is a common condition that promotes cellular senescence and premature aging through toxic alterations in the internal milieu. This occurs through several mechanisms, including DNA and mitochondria damage, increased reactive oxygen species generation, persistent inflammation, stem cell exhaustion, phosphate toxicity, decreased klotho expression, and telomere attrition….”

You can read the entire fascinating (to my way of thinking) American Journal of Kidney Disease article at http://www.natap.org/2013/HIV/PIIS0272638612015922.pdf.

Nature.com at http://www.nature.com/nrneph/journal/v10/n12/full/nrneph.2014.185.html seems to agree that CKD accelerates aging:

“Chronic kidney disease (CKD) shares many phenotypic similarities with other chronic diseases, including heart failure, chronic obstructive pulmonary disease, HIV infection and rheumatoid arthritis. The most apparent similarity is premature ageing, involving accelerated vascular disease and muscle wasting. We propose that in addition to a sedentary lifestyle and psychosocial and socioeconomic determinants, four major disease-induced mechanisms underlie premature ageing in CKD: an increase in allostatic load, activation of the ‘stress resistance response’, activation of age-promoting mechanisms and impairment of anti-ageing pathways. The most effective current interventions to modulate premature ageing—treatment of the underlying disease, optimal nutrition, correction of the internal environment and exercise training—reduce systemic inflammation and oxidative stress and induce muscle anabolism. Deeper mechanistic insight into the phenomena of premature ageing as well as early diagnosis of CKD might improve the application and efficacy of these interventions and provide novel leads to combat muscle wasting and vascular impairment in chronic diseases.”

Remember the friend of my daughter’s who hadn’t seen me in five years who (thought) he whispered to her, “Your mom got so old.” Now I understand why, although I have noticed this myself. I look in the mirror and see the bags under my eyes that are not errant eye liner. I see the lines in my faces, especially around my mouth, that weren’t there just a year ago. I see the stubborn fat around my middle that frustrates me no end. I see that it takes me forever (okay, so I’m being figurative here, folks) to recover from the flu, and I see how easily I become – and stay – tired. The dancer in me screams, “No fair!” The adult patient in me says, “Deal with it,” so I do.

I’ve used quite a bit of advanced terminology today, but haven’t explained a great deal of it in the hopes that when you read these articles their meanings will become clear in context. If they don’t, please leave me a comment and I will explore each one of them in future blogs. Who knows? Maybe I’ll need to devote an entire blog to whichever term it is you’d like to know more about.

Don’t let our premature aging get you down. We can work against it and, hopefully, slow it down just as we do with the progress of the decline in our kidney function.

I have been saving this bit of news for the last item in today’s blog. The world is not going to suffer if it doesn’t know about my photography, my teaching ,writing, or acting careers. But, when it comes to CKD, my writing can add something for those 31 million people who have it…especially the 90% that haven’t been diagnosed yet. What I did was completely change my web site so that it deals only with my Chronic Kidney Disease Awareness Advocacy (It’s all caps because that’s the way I think of it.) under the umbrella of SlowItDownCKD. I have to admit, I was surprised to see how active I’ve been in the last decade. It’s different when you see your work listed all in one place. Take a look at www.gail-raegarwood.com and tell me what you think, would you?

Until next week,

Keep living your life!

 

 

Yet Another Possibility

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

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

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

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

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

  • Sugar Free
  • Fat Free
  • Gluten Free

And Contain:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

How Sweet She Is

For 12 years, sweet Ms. Bella has positioned herself just inside my office door as I wrote, researched, edited, and formatted. For 12 years, sweet Ms. img_3326Bella has greeted me as effusively when I returned from a trip to the mailbox as she did when I returned from a trip to Alaska. For 12 years, sweet Ms. Bella has shared one sided conversations with me about any and everything. For 12 years, sweet Ms. Bella has adored me as no other being on earth ever has.

I’ll miss that. Sweet Ms. Bella crossed what I’m told is called The Rainbow Bridge this morning. .. and it was my decision. I’ve known for months that she had lymphedema. First we tried this. Then we tried that. And finally there was nothing else left to try. I am oh-so-sad without my boon companion, but it was time. She knew it and I knew it. May your soul come back to me, my sweet Ms. Bella.

I’ve been sad for a while knowing that I would have to make this decision and wondering how I would know when she’d had enough. I watched…and watched…and watched, yet she made it perfectly clear when her legs wouldn’t hold her up anymore and her cancerous lymph nodes started to impede her eating. She is at rest now.

What have I done to my kidneys with all this sadness, I wondered. I don’t know via my lab reports because I was just tested last Thursday and Urine_sampledidn’t know about sweet Ms. Bella’s cancer when my blood and urine were tested three months ago. So I did what I could to find out: I researched.

I found this on the National Kidney Foundation’s site at https://www.kidney.org/news/newsroom/nr/depression-kd:

New York, NY (July 1, 2012) – People with kidney disease who have symptoms of depression may be on the fast track to dialysis, hospitalization or death, according to a new study published in the July issue of the American Journal of Kidney Diseases, the official journal of the National Kidney Foundation.”

But I’m not depressed; I’m sad.  Well, what’s the difference? I turned to my old buddy WebMD for some help here:

“….Also known as clinical depression, major depressive disorder, or unipolar depression, major depression is a medical condition that goes beyond life’s ordinary ups and downs. Almost 18.8 million American adults experience depression each year, and women are nearly twice as likely as men to develop major depression. People with depression cannot simply ‘pull themselves together’ and get better. Treatment with counseling, medication, or both is key to recovery.”

Since I’m one of those people who always manage to get myself back together – and fairly quickly – I’d say I’m not depressed. I do suggest you read more about depression at http://www.webmd.com/depression/is-it-depression-or-the-blues if this strikes a chord with you.

So let’s go back to sadness and the kidneys. This is from a 5/21/14 article on a site that’s new to me: Medical Daily at http://www.medicaldaily.com/can-powerful-emotions-kill-you-negative-health-effects-anger-stress-sadness-and-shock-283682:

heart attack” ‘It’s called heartbreak for a reason. When you’re experiencing deep grief or sadness, it takes a toll on your health, too. One study from St. George’s University of London found that it is actually possible to die of a broken heart — bereavement increases your risk of a heart attack or stroke by nearly double after a partner’s death, the researchers discovered. We often use the term a ‘broken heart’ to signify the pain of losing a loved one and our study shows that bereavement can have a direct effect on the health of the heart,’ Dr. Sunil Shah, senior lecturer in public health at St. George’s, said in a press release.”

There’s a firm connection between heart health and kidney health. This is from SlowItDownCKD 2015:

“We’re used to reading about anemia and high blood pressure as the connection between CKD and Heart Disease, but here are two other causes.

DaVita at http://www.davita.com/kidney-disease/overview/symptoms-and- diagnosis/ chronic-kidney-disease-and-your-heart/e/4730 once again jumps in to educate us:

‘High homocysteine levels: Damaged kidneys cannot remove extra homocysteine, an amino acid in the blood. High levels of homocysteine can lead to coronary artery disease, stroke and heart attack.IMG_2980

Calcium-phosphate levels: Damaged kidneys cannot keep calcium and phosphorus levels in balance. Often, there’s too much phosphorus and calcium in the blood. When this happens, there’s a risk for coronary artery disease.’”

Hmmm, just by having Chronic Kidney Disease, we run the risk of heart problems.  Now sadness – maybe ‘deep grief’ is a more apt description – may add to that risk. As much as I love sweet Ms. Bella and will miss her, I can’t honestly say this is true for me. It feels like there’s a big difference between deep grief and sadness.

Just to make certain the difference between depression and sadness is clear, I’m repeating this information from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Make The Connection, a veterans’ support site tells us

‘Not everyone with depression has the same symptoms or feels the same way. One person might have difficulty sitting still, while another may FullSizeRender (3)find it hard to get out of bed each day. Other symptoms that may be signs of depression or may go along with being depressed include:

It doesn’t look like my short term sadness is worsening my kidneys in any way, but if you’re not sure whether you need help with yours, or if it is truly depression, seek help. It can’t hurt to be careful.

FullSizeRender (2)

I’m certain sweet Ms. Bella is not suffering anymore and that is already doing wonders for my peace of mind… and my sadness.

Until next week,

Keep living your life!

We, the People Who Have CKD…

Happy Independence Day! Here in the United States, we usually celebrate with fireworks and bar-b-ques that may include renal friendly foods, at fireworksleast at my house. We take our pets inside and try to shield them from the sounds of the fireworks that make them so uncomfortable and then we try to enjoy the heat, the sun, and the parades.

I’m all for Independence Day celebrations, but shy away from them myself. I’m like our pets; I can do without the noise. Since getting older (or medically ‘elderly,’ which always gives me a giggle), I can also do without the heat and the crowds. We used to have renal friendly bar-b-ques at our house, but now our kids are older and visit fiancés, go to bachelorette weekend celebrations, or go camping in other states during this long holiday weekend.

And I realize I do not want to be that far from what is euphemistically called a ‘restroom’ here in Arizona for all that long. There could be many reasons for that, my elderly state (Humph!); a urinary tract infection (UTI); a weak bladder; or interstitial cystitis.

A reader and good online friend – another Texas connection, by the way – asked me to write about interstitial cystitis today. There seems to be some confusion among us – meaning Chronic Kidney Disease patients – between chronic UTIs and interstitial cystitis.Digital Cover Part 2 redone - Copy

UTI is a descriptive term we probably all know since we have CKD and have to be aware of them. We have to be careful they don’t spread to the bladder and, eventually (but rarely), to the kidneys.  That can cause even more kidney damage. I explained a bit more in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“The second nephrologist to treat me referred me to an urologist when he realized I was on my fifth UTI in the same summer and he suspected this one had spread to my bladder. The urologist actually had me look through the cystoscope (I’m adding this today: a sort of long, narrow tube inserted to view both the urethra and bladder) myself to reassure me that the lower urinary tract infection had not spread to the upper urinary tract where the bladder is located.”

We know we have to be vigilant.  That’s where interstitial cystitis comes in. Let’s take a look at SlowItDownCKD 2015 for more information about cystitis:

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

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

SlowItDownCKD 2015 Book Cover (76x113)Bladder infections are not serious if treated right away. But they tend to come back in some people. Rarely, this can lead to kidney infections, which are more serious and may result in permanent kidney damage. So it’s very important to treat the underlying causes of a bladder infection and to take preventive steps to keep them from coming back.’”

Okay so we get the cystitis part of the condition, but what does interstitial mean? MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=9587defines it this way:

“Pertaining to being between things, especially between things that are normally closely spaced. The word interstitial is much used in medicine and has specific meaning, depending on the context. For instance, interstitial cystitis is a specific type of inflammation of the bladder wall.”

Hang on, just one more definition. This one is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439

“Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) — also called painful bladder syndrome — is a chronic condition in which you experience bladder pressure, bladder pain and sometimes pelvic pain, ranging from mild discomfort to severe pain. Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it’s full and then signals your brain that it’s time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people. With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people….”bladder

Hmmm, then this is clearly not a UTI. So why do we have to be careful about it? Time to look at the causes – or not. According to The National Institute of Diabetes, Digestive, and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-topics/urologic-disease/interstitial-cystitis-painful-bladder-syndrome/Pages/facts.aspx,

“Researchers are working to understand the causes of IC/PBS and to find effective treatments.

…Scientists believe IC/PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.”

* IC means interstitial cystitis; PBS is painful bladder syndrome

Maybe we should be looking at the cure instead – or not. “At this time there is no cure for interstitial cystitis (IC).” But ichelp does mention a number of possible treatments, some of which we cannot use as CKD patients since they may harm the kidneys. Take a look for yourself at: http://www.ichelp.org/diagnosis-treatment/

Whoa! No definitive cause, no cure, and treatments which may harm our kidneys. Where’s the good news in this?  Take another look at the information from The National Institute of Diabetes, Digestive, and Kidney Diseases again. Notice the word ‘inflammation’?

Bingo. CKD is also an inflammatory disease and may be that “more general condition that causes inflammation in various organs and parts of the body.” Wait, I just remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:DIGITAL_BOOK_THUMBNAIL

“Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.  By the way, it’s said that alkaline foods are a better way of eating should cancer rear its ugly head in your life.”

So it all comes back to inflammation.  Say, didn’t I recently write a blog about acidity vs. alkaline and inflammation?  Now there’s a good way to avoid the heat, the sun, and the parades of Independence Day. Stay inside (maybe while someone is bar-b-queuing renal friendly food outside) and peruse old blog posts.

What is itUntil next week,

Keep living your life!

All Is Not Lost

Last week, I told you the good news about SlowItDownCKD 2015 being available in print and digital on Amazon.com. And last week, I told the bad news about yet another member of my family being stricken with Parkinson’s disease.SlowItDownCKD 2015 Book Cover (76x113)

I didn’t know much about the medication to ameliorate the symptoms of the disease, so that’s what I’m exploring this week. But… we need to go back a little bit to see what this myriad of symptoms consists of. Let’s start with a simple definition of Parkinson’s disease. We’ll call it PD, but remember that doesn’t mean peritoneal dialysis in this particular blog.

According to Consumer Health Digest at https://www.consumerhealthdigest.com/health-conditions/parkinsons-disease.html,

“Parkinson’s disease is a disorder of the nervous system that progresses with time. It primarily affects the movement of a person. It develops steadily typically beginning with a slight tremor in one hand. Aside from causing tremor that is the most well-known sign of the disease, it also usually causes stiffness or the slowing of movement. During the early stages, the face may show very little, or no expression at all and the arms may not swing when the affected individual walks. Speech can also become softer or slurred.”no expression

I do see most of these symptoms in the newly diagnosed member of my family.  (Anecdote to lighten this heavy blog: one of my brothers has the ‘no expression’ symptom. A young fellow snidely called him stone face. I quietly told him my brother has Parkinson’s and can’t smile. My brother laughed. I laughed. Finally, the young fellow laughed, too.) What else?

The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/symptoms/CON-20028488 answered my question:

“Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may notice a back-and-forth rubbing of your thumb and forefinger, known as a pill-rolling tremor. One characteristic of Parkinson’s disease is a tremor of your hand when it is relaxed (at rest).

Slowed movement (bradykinesia). Over time, Parkinson’s disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk, or you may find it difficult to get out of a chair. Also, you may drag your feet as you try to walk, making it difficult to move.

Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can limit your range of motion and cause you pain.

Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.

Loss of automatic movements. In Parkinson’s disease, you may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.

Speech changes. You may have speech problems as a result of Parkinson’s disease. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.

micrographiaWriting changes. It may become hard to write, and your writing may appear small.”

Oh, I’d seen all of these in him. Maybe he should have taken his neurologist’s suggestion that he begin medication, but it hadn’t been explained very well. Actually, it hadn’t been explained at all. So what was it?

Oh, my, there are so many different medications listed depending upon your unique set of symptoms. The most common is a combination of L-dopa and carbidopa according to WebMD at http://www.webmd.com/parkinsons-disease/guide/drug-treatments.

“Levodopa (also called L-dopa) is the most commonly prescribed and most effective drug for controlling the symptoms of Parkinson’s disease, particularly bradykinesia  and rigidity.

Levodopa is transported to the nerve cells in the brain that produce dopamine. It is then converted into dopamine for the nerve cells to use as a neurotransmitter.

…carbidopa increases its effectiveness and prevents or lessens many of the side effects of levodopa, such as nauseavomiting, and occasional heart rhythm disturbances.”

Hey, wait a minute! Drugs.com at http://www.drugs.com/cdi/carbidopa-and-levodopa-suspension.html is emphatic that you tell your doctor if you have diabetes or kidney disease BEFORE this is prescribed for you. Ummmmm, we have CKD; that’s kidney disease… and many of us have diabetes which caused the CKD. There’s the same warning about kidney disease on the same site for carbidopa.

Last week, I discovered that if you have ESRD, you’ll more likely to develop Parkinson’s. This brings up more and more questions for me. My newly diagnosed with Parkinson’s family member doesn’t have CKD, but I do… and you do. What if we reach end stage? What if we develop Parkinson’s? You know what? That’s what the specialists are for.parkinsons-disease-info

Thank you to MichaelJFox.org for sharing the infogram above.

Looking at the medical treatments of a disease that’s fairly new to me, what I’ve realized is that your drug treatment has to be specifically tailored for you. You may have symptoms my loved one doesn’t; he may have symptoms you don’t. You may well tolerate a drug; he may need secondary drugs to counteract the side effects of the same drug. He may well tolerate a drug you just can’t without several secondary drugs to counteract the side effects.

When one of my brothers told me this is a complicated disease, I don’t think I realized just how complicated. I’m not a doctor as I keep repeating. I know when we need one, a specialist at that, and now is the time.

Does that mean lose hope? Of course not, drugs are only one type of treatment for Parkinson’s. There’s a whole new field of physical therapy especially for movement disorders. Most of these will cover:

Strengtheningpd ex

Flexibility

Balance

Gait Training

Transfer Training

I’ve been watching my loved one struggle to lift himself off the couch, navigate turns while walking, and keep his balance. It could be heart breaking if we didn’t know help is available. The program he’ll be attending is intensive, four weeks of four days a week. The retired teacher over here told him to think of it as school. Honestly, I don’t care how he thinks of it as long as he does it.

What is it

Well, it’s time to try out some of his until therapy starts exercises with him.IMG_1398

Until next week,

Keep living your life!

If Only It Had Been an April’s Fools Joke

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Part 2

DIGITAL_BOOK_THUMBNAIL

 

Until next week,

Keep living your life!

Renal Sally Port

Sometimes things just pop into a writer’s head for no reason at all. The title of this week’s blog did that over and over again. Okay, I thought, I’ll go with it.  Only one problem: I didn’t know what a sally port was and why I should be writing about a renal one.

BearandmeHmmmm, I did marry a military man. I asked. He explained but I wanted to see it in writing. Hence, this definition from The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/sally%20port:

1:  a gate or passage in a fortified place for use by troops making a sortieSally port

2:  a secure entryway (as at a prison) that consists of a series of doors or gates

Oh, now I got it. I immediately thought of Fort Wadsworth on Staten Island where I took my little children to Civil War reenactments. There were scary, dank areas between the port and the base which were enclosed between large old gates at either end. No sun got in and it echoed in there. It was a place of fascination and fear for my little ones. What did that have to do with our kidneys?

Then I thought of having visited the friend I’d written about in the hospital when his bipolar medications needed immediate adjustment. One door was unlocked for me, I entered. That door was relocked behind me and another unlocked in front of me. That was a sally port, too.

Our gaggle of grown children has told us enough about ‘Orange is the New Black’ that our interest was piqued. Then Bear read my Hunter College Dascha PolancoAlumni News Letter and saw that Dascha Polanco – a major character in the series – also graduated from Hunter, although not exactly the same year I did. Those seemed like good enough reasons to give the series a try. It was set in a prison with a series of sally ports to enter or exit.

Now it was more than clear. A sally port is a security feature to guard entry and exit. Good, one half of the renal sally port secret revealed. Now, do our kidneys have sally ports?

This is the structure of your kidney. It’s clear there are three ways in or out of the kidney: the veins, the arteries, and the ureters. Let’s take a look at each to see which, if any, is a sally port.  Blood Oxygen Cycle Picture 400dpi jpg

In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, it was explained that the renal (kidney) artery brings the unfiltered blood into the kidney:

What is it“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.  The glomerulus is connected to a renal tubule, something so small that it is microscopic. The renal tubule is attached to a collection area.  The blood is filtered. Then the waste goes through the tubules to have water and chemicals balanced according to the body’s present needs. Finally, the waste is voided via your urine to the tune of 50 gallons of fluid filtered by the kidneys DAILY.  The renal vein uses blood vessels to take most of the blood back into the body.”

Well, what about the renal vein? Here’s how I explained it in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“If you look at a picture of your kidney, you’ll see that blood with wastes in it is brought to the kidneys by the renal artery and clean blood is exited Part 2from the kidneys by the renal vein.  Your kidneys are already compromised which means they are not doing such a great job of filtering your blood.”

Well, if the renal artery is the sally port for the blood entering your kidneys, the renal vein sounds like the more important renal sally port since it’s allowing that poorly filtered blood back into your blood stream.

Oh wait, we forgot the ureter.   There’s an explanation from the presently-being-published SlowItDownCKD 2015 about that.

Many thanks to the ever reliable MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2472 for the following.

SlowItDownCKD 2015 Book cover“A hollow organ in the lower abdomen that stores urine. The kidneys filter waste from the blood and produce urine, which enters the bladder through two tubes, called ureters. Urine leaves the bladder through another tube, the urethra. In women, the urethra is a short tube that opens just in front of the vagina. In men, it is longer, passing through the prostate gland and then the penis. Also known as urinary bladder and vesical.”

Uh, no, there’s nothing in that description that indicates the urethra is a sally port.

So… the renal vein then.  How does this poor excuse for allowing filtered blood back into our blood stream affect us? (I do admit that it seems it’s more the fault of the damaged glomeruli than the renal vein acting as a sally port.)

For one thing, we become one of the one-in-three at risk for Chronic Kidney Disease … and that’s only in America. For another, our bodily functions differently as do our minds. I included this not-so-pleasing information from EurekAlert! in a 2012 post in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

Decreased kidney function leads to decreased cognitive functioning

“Decreased kidney function is associated with decreased cognitive functioning in areas such as global cognitive ability, abstract reasoning and DIGITAL_BOOK_THUMBNAILverbal memory, according to a study led by Temple University. This is the first study describing change in multiple domains of cognitive functioning in order to determine which specific abilities are most affected in individuals with impaired renal function.”

But there’s more. According to the National Kidney Foundation at https://www.kidney.org/news/newsroom/factsheets/FastFacts, this is what is our kidneys are NOT doing for us as well as they should since we have CKD:

  • Regulate the body’s fluid levels
  • Filter wastes and toxins from the blood
  • National Kidney MonthRelease a hormone that regulates blood pressure
  • Activate Vitamin D to maintain healthy bones
  • Release the hormone that directs production of red blood cells
  • Keep blood minerals in balance (sodium, phosphorus, potassium)

I’m glad I got the term renal sally port out of my system, but I wish the news had been better.

Until next week,

Keep living your life!

The Breath of Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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!

They’re Not Two Separate Things

I know someone who is mentally ill.  You do, too, although you may not be aware of it. PTSD, bipolar, personality disorder, poor impulse control, schizophrenia, braindepression, anxiety disorders, obsessive-compulsion, even eating disorders. I could go on and on with diagnoses we know nothing about when we meet the person. (Well, maybe we would with an eating disorder.) And why should we?

With medication, this person can function in the world… and function well. For those of you who are successfully treating your psychiatric illness holistically, whatever it is you are taking or doing that works for you will be included in the category of medication for the purposes of this blog.

But what if the person is not taking the medication necessary? What if they’re not and they have CKD? What if they are and have CKD? How does that affect their kidneys?

I came across a 2002 grant proposal on the National Institutes of Health site at http://grants.nih.gov/grants/guide/rfa-files/RFA-DK-02-009.html which made clear that there is a correlation.

“There is substantial evidence that severe chronic illness may be associated with and exacerbated by co-existent mental disorders such as depression, anxiety NIHdisorders, schizophrenia, and eating disorders.  Nonetheless, few studies have addressed the natural history and consequences of co-existent mental disorders on chronic diseases of interest to the NIDDK, such as diabetes mellitus, chronic renal disease and obesity and eating disorders.”

The person I know has two parents with CKD. That means he has to be extra vigilant about preventing CKD. But can he with the impulsive, irrational thinking he occasionally experiences?

One of the many complications of Chronic Kidney Disease according to The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/kidney-disease/basics/complications/con-20026778 is

“Damage to your central nervous system, which can cause difficulty concentrating, personality changes or seizures”

Difficulty concentrating.  Personality changes. Just as in mental illness.

Let me talk about that term a bit. By mental illness, I mean a psychiatric condition rather than a physical one, but one that requires daily treatment, just as diabetes or CKD does. You watch your diet, don’t you? And try to stay away from stress? There’s another kind of daily attention psychiatric patients need to adhere to.

And here’s where it gets muddled. Just as CKD, a physical condition, can cause mental problems, a psychiatric condition can cause physical conditions.  The two are wrapped up in each other. You can’t divorce the physical from the mental or vice-versa. You are one person with all these interrelated parts.

Mental illness is far more prevalent than you think… and that’s with its being ‘out of the closet,’ so to speak, in recent years. The Centers for Disease Control’s Fact Sheet about mental health surveillance at http://www.cdc.gov/mentalhealthsurveillance/fact_sheet.html  contains the following statement.CDC

“According to the World Health Organization, mental illness results in more disability in developed countries than any other group of illnesses, including cancer and heart disease. Other published studies report that about 25% of all U.S. adults have a mental illness and that nearly 50% of U.S. adults will develop at least one mental illness during their lifetime.”

Let me make it worse.  This was in 2002, 13 years ago.

In 2012, the CDC had this to say about mental illness and chronic disease:

“One common finding is that people who suffer from a chronic disease are more likely to also suffer from depression. Scientists have yet to determine if having a chronic disease increases the prevalence of depression or depression increases the risk of obtaining a chronic disease.”

This is from a study about chronic disease and mental health in the workplace. You can read more about that at http://www.cdc.gov/nationalhealthyworksite/docs/Issue-Brief-No-2-Mental-Health-and-Chronic-Disease.pdf

I know little about medications for mental illness except for those prescribed for my friend.  As an example of how drugs for psychiatric conditions may or may not interact with your physical ailments, let’s talk a bit about his drugs.

zyprexaWhen my bipolar friend has a manic episode, an anti-psychotic – Zyprexa (generic name Olanzapine) – is prescribed. WebMD at http://www.webmd.com/drugs/2/drug-1699/zyprexa-oral/details# tells us

“This medication can help to decrease hallucinations and help you to think more clearly and positively about yourself, feel less agitated, and take a more active part in everyday life.”

Okay, sometimes my friend needs that, but there are also things he doesn’t need.

glucose“This drug may infrequently make your blood sugar level rise, which can cause or worsen diabetes. Tell your doctor immediately if you develop symptoms of high blood sugar, such as increased thirst and urination. If you already have diabetes, be sure to check your blood sugars regularly. Your doctor may need to adjust your diabetes medication, exercise program, or diet.

This drug may also cause significant weight gain and a rise in your blood cholesterol (or triglyceride) levels…. These effects, along with diabetes, may increase your risk for developing heart disease. “

Not so great for someone that has two parents with CKD, one with CKD caused by diabetes. As for the cholesterol or triglyceride levels,  we could be getting pretty close to heart disease here, as mentioned above. Nothing about the kidneys, yet diabetes is the leading cause of CKD.

What else was he recently prescribed? Oh, yes, lithium.  He’s been taking that off and on since he was 14 and first diagnosed with bipolar disorder. Drugs.com at http://www.drugs.com/sfx/lithium-side-effects.html made me weep – not that this was going to help anything. I keep reminding myself that this is not usual when taking the drug, but my mind keeps placing the image of his two CKD parents before me.

“Moderate reversible increases in blood urea nitrogen and serum creatinine as well as proteinuria have been observed in patients with lithium toxicity. Rarely the decreases in glomerular filtration have been persistent. A variety of renal effects have been reported and include glomerular sclerosis, interstitial fibrosis, chronic interstitial nephritis, nephrotic syndrome, renal tubular acidosis and tubular atrophy.”Glomerulus-Nephron 300 dpi jpg

Sometimes you need to take a risk to save your life. I’m sure that’s what my friend’s doctors are doing here. I’ve known him all his life. I hope they’re doing the right thing.

On a more positive note, Amazon tells me all three books are now available in the Japanese market as well as being available in Europe and other areas.  Nothing like getting the word about CKD Awareness out to the entire world.IMG_1398What is it

Today is Labor Day. Thank you to all those union organizers that were jailed repeatedly- like Benjamin Binenbaum, my maternal grandfather – for the advantages they won for us.

Until next week,

Keep living your life!labor day

What If…

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

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

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

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

According to DaVita.com, Stage 3A means:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Poor mental health linked to reduced life expectancy

There  is  a  possibility  that  mental  health  problems  may  be  associated with  biological  changes  in  the  body  that  increase  the  risk  of  diseases such as heart disease.

In  this  study,  approximately  a  quarter  of  people  suffered  from  minor symptoms  of  anxiety  and  depression,  however,  these  patients  do  not usually come to the attention of mental health services. The authors say that  their  findings  could  have  implications  for  the  way  minor  mental health problems are treated.

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Going Mental

Ilana Contest Winner!  Congratulations to Ilana Lydia for winning the photo contest for the Weirdest Place to read one of my CKD books.  She took a little poetic license and had her cat read the digital version on her computer.  I never would have thought of that… or my Bear’s reading one of the books while welding or Abby’s reading one while walking the tightrope and twirling a hoola hoop.  (They were disqualified because they’re immediate family.)

Thanks for all the entries, you creative readers, you. Ilana, please contact me privately so I can send you a brand new, personally inscribed copy of The Book of Blogs: Moderate Chronic Kidney Disease, Part 1.  If any of you have a contest idea you’d like to have me run, just let me know.  This contest idea was from avid reader, Geo DeAngelo.  Thanks again, Geo.DIGITAL_BOOK_THUMBNAIL

Aha, looks like there’s a free Path to Wellness health screening coming up. This one is in Mesa, Arizona, at Adelante Healthcare 1705 W. Main St. on the 20th from 8 to 1:30. That’s a Saturday. There are two requisites here: you must be over 18 and have a nuclear family member with diabetes, heart disease, or kidney disease OR a history of diabetes or high blood pressure yourself.

Path to Wellness screenings include the screening itself, immediate blood and urine results, doctor consult, onsite health education, 6 week Healthy Living Workshops, and help finding a family doctor.  Just call the National Kidney Foundation of Arizona for an appointment at 602 840 1644 for English speakers or 602 845 7905 for those who would prefer Spanish.NKF-logo_Hori_OB

Have I mentioned enough times that this screening is free?  Early diagnose is important so you can slow down the progression of the disease. You can’t be treated for the disease if you don’t know you have it.  Now you’ve just lost the ‘I don’t have the money for that’ excuse.  Be good to yourself and get screened.

Now, about that blog title.  You know when you have a preconceived notion that you seem to make things come out that way?  Okay, we all go for periodic blood tests.  The procedure is called venipuncture which simply means puncturing the vein. Since I’m on a cholesterol medication, it’s once every three months for me.  I went for the blood draw on Friday.

There are two phlebotomists at the Lab Corp attached to my PCP’s practice.  One is so heavy handed that it hurts and I have discreetly requested that 1. She not draw my blood and 2. She be told why I made that request.  It turns out this was not news to her, yet she continues to work there. She was not the problem this time.Abby book

The other phlebotomist has the touch of a butterfly and a great deal of personality to boot.  I know if she draws my blood, it’s not going to hurt. My veins are also becoming ‘difficult’ after all these years of blood tests.  They roll, collapse, or seemingly disappear. I just realized these problems are all associated with elderly patients.  Hey, I’m not there yet! Truthfully, some of these problems may have to do with the placement and depth of the needle. If you’re interested, there’s a fairly easy to understand ARO Onsite Training and Consulting (for phlebotomists) site at blood drawhttp://arotraining.com/images/Documents/Venipuncture%20Module%206_Venipuncture%20Complications%20and%20Special%20Circumstances.pdf

Finally, we get to the mental part.  While I knew the preferred phlebotomist wasn’t going to make me hurt – other than the initial pinch – it did hurt. I just didn’t experience the sensation that way. I have a close to the surface vein in my upper left arm and, after palpating but not finding a really good vein in the crooks of either of my elbows or the back of my hands, she decided to use that one… with my blessing.  I’d been wondering why no one ever tried that vein before. Note the size of the bruise this resulted in:IMG_1220

It worked for 1 ½ of the 3 tubes that were needed, then it collapsed.  She knew I’d have a whopping bruise, but I still didn’t feel the pain I should have been feeling according to my past experience of venipuncture and hers.  Why?

Ah, the brain is a marvelous thing. According to About Health at http://pain.about.com/od/whatischronicpain/a/feeling_pain.htm

Special pain receptors called nociceptors activate whenever there has been an injury, or even a potential injury, such as breaking the skin or Bear and bookcausing a large indentation.

Venipuncture, although it is to help keep you healthy, is an injury to the skin and vein.  So have I somehow been manipulating my nociceptors? No, I don’t think so.

There are many sites on the internet that explain how you can use visualization, transference, mental imagery, meditation, and other such techniques to lessen chronic pain. That’s not what I was dealing with. I knew, absolutely knew, I wasn’t going to experience any pain. I usually do some deep breathing, do not look at the site being punctured (wrote a whole blog about that a few years ago), and cracked jokes with the young lady performing the procedure.

In other words, there was no anxiety, no fear, no foreboding, just a simple case of I-have-to-do-this-therefore-I-will-and- I-will-experience-the-pain-as-mildly-annoying. I know. I know. I wish I could do this at the dentist’s office, too.

brainI had expected to offer you loads of scientific information about this from alternative medicine sites, but they all seem to say the same thing I just did.  Over 40 years ago, I was involved with Seagull Mind Training. That was a company (now defunct) that claimed to teach you how to use more of your brain power. I say we are using more, all of us, with the quest into mind/body connection, alternative and complementary medicine, and an overall awareness of our general good health. The difference is that we now accept this as commonplace.

While this is not something I would try with major surgery, you might be surprised at how well it works during your next blood draw.

Poor books seem to get ignored until the very end of my posts lately.  I urge you to share, people, share. If you’ve bought the Kindle version, there is a share program available. You can also ask your library to order copies.

Until next week,

Keep living your life!Digital Cover Part 2 redone - CopyWhat is it

Sailing, Naturally

Wow!  I just spent the past three days at a Landmark Wisdom Unlimited course and discovered that my already terrific life is even more than terrific than I thought. The theme was loosely, “What do you like about your life?” I was one of those that just kept going and growing my list again and again. Sharing Chronic Kidney Disease awareness was high on that list.

Talking about sharing, I casually mentioned to my daughter Nima – researcher par excellence – that I was looking for information about natural Nimapreventatives and/or cures for sea sickness.  Most of today’s research came from her immediately jumping on my comment.  Then I casually mentioned to her that she might consider a job as a writer’s research assistant.  She’s a talented person in many areas (I guarantee you this is not just mother pride), and this is one of them.

Bear and I are still about six weeks out from my very first cruise.  I’ve managed all the business, such as the tickets, the land excursions, the hotels for before and after, etc. What I’m still working on is the cautions about motion sickness made by my sister-in-law – Judy Peck. Last week I wrote about over the counter medical solutions and their relationship to CKD.  This week, we go the natural path.IMG_0959 (1)

That said (written), I must caution you in my turn.  Natural aids have neither been tested nor approved by the Federal Drug Administration.  Even if you’re not in favor of the FDA, remember that dosages and timing of natural aids have not been tested either.  Also, see page 87 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

In other words, if anything in today’s blog catches your interest, please check with your nephrologist before you even think of taking whatever the product is.  I am not a doctor, have never claimed to be one, and want you to understand that you and your nephrologist are the final arbitrators of what is safe for your kidneys and what is not.

Ready?  Here we go. First off, we have WebMD at http://www.webmd.com/a-to-z-guides/acupressure-bands-for-motion-sickness-topic-overview. This is the one that caught my eye right away.

These bands use pressure, electricity, or both to stimulate the P6 acupuncture point. This point is located about two finger-widths from the crease on the underside of the wrist. The elastic bands usually have a raised surface that applies pressure on the wrist. Practitioners of acupuncture and acupressure believe stimulation of this point may stop nausea and vomiting.Adult Pack

Reminder: this is not an endorsement of this particular brand, simply a representation of what the band looks like and how it’s used.

Neither side effects nor effectiveness have been proven, so I’m wondering how I can test this before we cruise.  In New York, I would have jumped on the Staten Island ferry.  Wait, I never got seasick on the ferry, so that wouldn’t work.  Hmmm, I didn’t get seasick on the cruises around Manhattan Island either.

Maybe I’m one of those people who just doesn’t get seasick. But just in case you are, I’ll write about what else Nima found for us.

Many thanks to both my daughter for finding this and the HerbalShop.com at http://herbalshop.com/Acupressure/Acupressure_12.html for these

charts showing the acupressure points that can help.

Again, I don’t see how this can harm the kidneys, but I do urge you to talk with your nephrologist beforehand.  I found an equal number of articles in favor of and opposed to acupressure in the treatment of CKD, but none about using it for seasickness if you have CKD.  Interesting.

Now I’m wondering if this is my favorite natural seasickness aid. Of course, you can use a mixture of methods.  By the way, you don’t need to massage all these pressure points.  One or two may do the trick.

Nima also found an interesting (I think) article on yoga for seasickness on The Art of Living site at http://www.artofliving.org/in-en/yoga/health-and-wellness/yoga-for-motion-sickness. However, I have to admit my ignorance.  I understood very little of it since it mentioned positions a non-yogi – like me – would have to research and probably, more realistically, learn from a teacher – say as in a class.

The article didn’t mention CKD so I attempted to research yoga + chronic kidney disease + seasickness.  That didn’t work, so I kept rearranging the order of the search terms and still got no hits. I don’t see how yoga can hurt, other than sprains and strains if it’s all new to you, but I hesitate to say this is okay when I’m not your nephrologist.

Then there was this on Ask Dr. Mao at http://www.askdrmao.com/questions-and-answers/ginger-for-nausea/

Ginger has been used as food and medicine for millennia. Ginger’s modern use dates back to the early 1980s, when a scientist named D. Mowrey noticed that ginger-filled capsules reduced his nausea during an episode of flu. Subsequent research ultimately led to approve ginger being used as a treatment for indigestion and motion sickness.

Cup of Tea in MorningGinger is typically not as effective as standard drugs for motion sickness, but it has the advantage of not causing drowsiness. Some physicians recommend ginger over other motion sickness drugs for older individuals who are unusually sensitive to drowsiness or loss of balance.

However, the National Kidney Foundation does caution that ginger could interfere with your prescription medication.  While not specially aimed at the CKD population, this is the first I noticed any mention of “motion sickness drugs” and “loss of balance” in the same sentence. Odd that a medication aimed at relieving such symptoms can actually be a cause of one.

I have no intention of becoming seasick on our two cruises (the second in the Caribbean in September to celebrate said sister-in-law’s birthday and the 48th anniversary she will be sharing with my brother, Paul), but you know I’ll be bringing the acupressure chart and one of the seasickness bands with me… should my nephrologist concur.

Book Cover

I have a favor to ask: if you have read either of The Book of Blogs: Moderate Stage Chronic Kidney Disease, please write a review onDigital Cover Part 1 Amazon.com.  This is what one reader had to say in his review,

If you have kidney disease, like I do, you can relate to what Gail Rae-Garwood has written here… very useful…

Until next week,Part 2

Keep living your life!

On the Sea, On the Sea, On the Beautiful Sea

What a week!  All the aspects of the Phoenix Kidney Walk have been completed, although you can still donate to Team SlowItDownCKD at kidneywalk.kintera.org until May 31st.  No, this is not a solicitation, but rather information for those of you who had asked for it. 2015-04-18 22.02.52

I thought you might like to see some of the pictures so here they are sprinkled throughout today’s blog – with thanks to Keith Harris for being our impromptu (and talented) photographer. Most of the members of our team were too busy walking to stay still for photos, but they were there. That’s Keith Harris, Patti DuBois & me in the photo above.

This allowed me to slow it down a bit myself.  So much so that I started finalizing the plans for the cruise to Vancouver, B.C. and Alaska that’s my gift to Bear for our second anniversary. (Finally, our long awaited honeymoon!) One of the things my very-experienced-at-cruising sister-in-law, Judy Peck, told me about is anti-motion sickness medication.  And, of course, my first reaction was, “I’ll have to research that for Chronic Kidney Disease.”  The banner picture is of my daughter, Abby Wegerski, on the left and me on the right.

2015-04-18 22.09.45

First I went to the UK site ‘Patient’ at http://www.patient.co.uk/medicine/cyclizine-for-sickness for the definition of what is commonly known as sea sickness or, as the English call it, travel sickness. This site has the some of the most reader friendly explanations for medical issues.

Nerves situated inside your ear send messages to your brain with information about your movement. Along with messages from your eyes and muscles, these nerves help your body to maintain a good sense of balance. If the nerves in one of your ears send too many, too few, or wrong messages to your brain, it conflicts with the messages sent from your other ear, your eyes, or your body. Your brain then gets confused and this can cause dizziness and vertigo (a spinning sensation), and can make you feel sick.

Travel sickness is caused by repeated unusual movements during travelling. These repeated movements, such as going over bumps or around in a 2015-04-18 21.41.32  circle, send lots of messages to your brain. The balance mechanism in your ear sends different signals to those from your eyes, which  results in your brain receiving mixed and confusing messages. This is what causes you to feel sick.

That’s a picture of my young friend and pooper scooper/dog sitter, Willie Vlasity and Mr. Taco Bell.

Makes sense.  Now, what can we do about it? According to MedicineNet at     http://www.medicinenet.com/motion_sickness_sea_sickness_car_sickness/page3.htm,

Over-the-counter medications, and occasionally prescription medications, are used to relieve and in some cases prevent motion sickness. Some of the more common medications that can be used for motion sickness include:

Scopolamine (transdermal patches, Transderm-Scop)2015-04-18 21.08.28

dimenhydrinate (Dramamine)

meclizine (Antivert, Bonine, Meni-D, Antrizine)

promethazine (Phenergan, Phenadoz, Promethegan)

diphenhydramine (Benadryl)

cyclizine (Marezine)

Notice Patti made a new friend, too.

Wonderful, except that when I researched each of these on different sites, this is what I found. By the way, the bolding and italicizing are mine.

2015-04-18 21.39.40

Lara Garwood, my step-daughter, helped me show off our team t-shirts.

At MedlinePlus, A service of the U.S. National Library of Medicine from the National Institutes of Health National Institutes of Health (http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682509.html),

Before using scopolamine patches… tell your doctor if you have or have ever had glaucoma; heart, liver, or kidney disease; stomach or intestinal obstruction; or difficulty urinating.

From Drugs.com at http://www.drugs.com/disease-interactions/dimenhydrinate,dramamine.html about dimenhydrinate, better known as Dramamine (including less drowsy),

Limited pharmacokinetic data are available for the older, first-generation antihistamines. Many appear to be primarily metabolized by the liver, and both parent drugs and metabolites are excreted in the urine. Patients with renal and/or liver disease may be at greater risk for adverse effects from antihistamines due to drug and metabolite accumulation. Therapy with antihistamines should be administered cautiously in such patients. Lower initial dosages may be appropriate.

On the contrary, MedicineNet.com at http://www.medicinenet.com/meclizine/index.htm does not list kidney disease at all for meclizine.  Although, there is a warning against alcohol use while using this medication.

2015-04-18 20.55.37

Isn’t that a wonderful entry to the National Kidney Foundation of Arizona Phoenix Kidney Walk?

Trying to use as many varied sources as possible, I went to WebMD at http://www.webmd.com/drugs/2/drug-8895/promethazine-oral/details for information on promethazine.

Before using this medication, tell your doctor or pharmacist your medical history, especially of: breathing problems (such as asthma, chronic obstructive pulmonary disease-COPD, sleep apnea), blood/immune system problems (such as bone marrow depression), high pressure in the eye (glaucoma), heart disease (such as irregular heartbeat), high blood pressure, liver disease, certain brain disorders (such as neuroleptic malignant syndrome, Reye’s syndrome, seizures), stomach/intestine problems (such as blockage, ulcer), overactive thyroid (hyperthyroidism), difficulty urinating (for example, due to enlarged prostate).

True, there is no warning against using promethazine if you have CKD, but how many of us who do also have sleep apnea and/or high blood pressure – the second most common cause of CKD.

Back to Medicinenet.com for the following about diphenhydramine at http://www.medicinenet.com/diphenhydramine/article.htm.

Diphenhydramine should be used with caution (if at all) in persons with narrow-angle glaucoma, prostatic hypertrophy (enlarged prostate gland), hyperthyroidism, cardiovascular disease, high blood pressure (hypertension), and asthma.

motion sickness

And what about cyclizine?  Everydayhealth.com at http://www.everydayhealth.com/drugs/cyclizine has no warnings about taking this if you have kidney disease.  There was one line in the how to take it section that just, plain cracked me up.  See if you get a good laugh out of this, too.

The chewable tablet must be chewed before you swallow it.

Let’s look into the two without any CKD warnings a bit more. Uh-oh, the British version of WebMD at http://drugs.webmd.boots.com/drugs/drug-137-Cyclizine.aspx tells us something different about cyclizine than the U.S. version of the same website.

Cyclizine should be used with caution in:

People with glaucoma (increased pressure in the eye)

People with obstructive disease of the stomach

People with liver disease

People with epilepsy (fits)

Males with prostatic hypertrophy (enlargement of prostate gland)

People with severe heart failure

People with decreased kidney functionncl

Pregnant women

Women breastfeeding

The elderly

As for meclizine, even the U.S. version of WebMD says emphatically “Consult your doctor.”

In all honesty, I wouldn’t take any medication without consulting my doctor – specifically my nephrologist.  I urge you to do the same.

Let’s say I was sufficiently spooked by today’s blog to not even want to try medication.  Is there something I could use to prevent sea sickness that’s not medication?  Of course, there is. Many people swear by these remedies, but that’s next week’s blog, folks.

Thank you so much for participating in the prize giveaways for each of the books.  As I saw each prize claimed, all I could think was, “Look how many people are going to share their awareness of Chronic Kidney Disease.”

Book Cover

Until next week,Part 2Digital Cover Part 1

Keep living your life!

Maybe Just a Little One

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

 

A Foggy Day… in Your Brain

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

It’s the Salt of the Earth

passoverPassover begins tonight at sundown. A Guten Pesach for all those who celebrate.  We’re hosting the first seder here tonight.  Only  three of our eleven guests are Jewish, although there is a hint of Jewish blood in a few others.  All are welcome… including Elijah.

Yesterday, I attended a Palm Sunday Brunch hosted by an acting colleague. Unfortunately for me, none of the food she carefully made from scratch was on the renal diet (I can’t eat many of the traditional Passover foods either), so I did my taste-each-food-to-be-polite thing. I had such minimal amounts of each that I wasn’t doing damage to my kidneys, but I also discovered new tastes.

I realized none of this food tasted salty to me, as food not on the renal diet usually does. When asked, she told me she doesn’t use salt but spices instead. This stuff was delicious! If I weren’t on the renal diet, I would have asked her for the recipes for each dish she’d made.

Nancy’s not using salt in her cooking got me to thinking if we needed salt at all. Actually, I knew we did, but I didn’t know why. I poked around and found the following on an NPR blog:

“If you don’t keep up your sodium level in your body, you will die,” explains Paul Breslin, a researcher at the Monell Center, a research institute in downtown Philadelphia devoted to the senses of taste and smell. (Breslin also teaches at Rutgers University.) “

That’s extraordinarily blunt, but there’s quite a bit more about this at http://www.npr.org/blogs/thesalt/2012/12/20/167619010/the-paradox-and-mystery-of-our-taste-for-salt. What I got from this is the same question I usually have: why?Whatever Happened to Common Sense?

I remembered that salt regulates your hydration but decided to check this anyway. According to The Royal Academy of Chemistry at http://www.rsc.org/get-involved/hot-topics/Salt/do-we-need-salt.asp,

It is the sodium (ions) present in salt that the body requires in order to perform a variety of essential functions. Salt helps maintain the fluid in our blood cells and is used to transmit information in our nerves and muscles. It is also used in the uptake of certain nutrients from our small intestines. The body cannot make salt and so we are reliant on food to ensure that we get the required intake.

An EurekAlert at http://www.eurekalert.org/pub_releases/2013-08/mu-anr082013.php made me realize another important function of sodium, the element our bodies cannot produce:

Researchers at McGill University have found that sodium – the main chemical component in table salt – is a unique “on/off” switch for a major neurotransmitter  receptor in the brain. This receptor, known as the kainate receptor, is fundamental for normal brain function and is implicated in numerous diseases, such as epilepsy neuropathic pain.

Normal brain function!brain

Just in case you didn’t take chemistry in high school or college – which I admit was too intimidating for me – salt is 40% sodium and 60% chloride. It’s the 40% sodium that causes a problem if you have too much of it. This is a quandary. You need salt to live and function well, but too much can kill you via raising your blood pressure.

There is an ongoing controversy of how much salt we need on a daily basis. This is what is on Colorado State’s website at http://www.ext.colostate.edu/pubs/foodnut/09354.html:

The Dietary Guidelines for Americans recommended reducing sodium intake to no more than 2,300 milligrams per day. However, those with hypertension, over the age of 51, or who are African American, should consume no more than 1,500 milligrams of sodium per day. This recommendation includes over half of all Americans.

But have they taken into account the fact that we sweat during the summer or when we work out and lose a great deal of sodium that way? Does that mean we need more sodium during these times? And how do you judge how much sodium is too much anyway? Or do we use the Goldilocks Theory of ‘just right’ here.

All right, then. The next logical question would be how much is usually too much. Hello Medical News Today at http://www.medicalnewstoday.com/articles/146677.php. That’s where I found this handy, dandy, how much chart.

food labelHow to read food labels and identify high and low salt foods

You should check the labels of foods to find out which ones are high and low in salt

content. If the label has more than 1.5g of salt (or 0.6g of sodium) per 100g it is a

high salt content food.

If it has 0.3g of salt (0.1g of sodium) per 100g then it is a low salt content food. Anything in

between is a medium salt content food.

  • High salt content food = 1.5g of salt (or 0.6g of sodium) per 100g
  • Medium salt content food = between the High and Low figures
  • Low salt content food = 0.3g of salt (0.1g of sodium) per 100g

The amount you eat of a particular food decides how much salt you will get from it.

As renal patients, we need to pay special attention to the amount of sodium we ingest. I’m on the Northern Arizona Council of Renal Dietitians’ diet which permits 2,000 mg. of sodium a day. That’s really limited since a teaspoon of salt has about 2,300 mg. of sodium. Of course, now that I’m over 51 (okay, way over), I’m down to 1,500 mg. of sodium daily.

How do I keep within my guidelines, you ask? It’s become easy, but don’t forget I’ve had seven years to perfect it. We do have filled salt shakers available in the kitchen, but they’re invisible to me. I use spices in cooking instead. My best friend there is Mrs. Dash’s, although there are many other spices on the renal diet. I just like her (its?) blends. I check labels copiously when I do the marketing and Bear does too. If there’s hidden sodium in foods, there’s not much I can do about it. However, checking labels and ignoring the salt shaker will help keep my kidneys safe from too much sodium. (Pssst: I also ignore whatever food you can buy at gas stations.)salt shakers

As DaVita tells us (http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/sodium-and-chronic-kidney-disease/e/5310)

Particularly damaging is sodium’s link to high blood pressure. High blood pressure can cause more damage to unhealthy kidneys. This damage further reduces kidney function, resulting in even more fluid and waste build up in the body.

Other sodium-related complications include the following:

  1. Edema: noticeable swelling in your legs, hands and face
  2. Heart failure: excess fluid in the bloodstream can overwork your heart making it enlarged and weak
  3. Shortness of breath: fluid can build up in the lungs, making it difficult to breatheUntil next week,

So lay off the salt, my friends.

recall centerBefore I leave you this week, I wanted to let you know that Dr. Mario Trucillo contacted me about his new company.  He is a Ph.D. with the American Recall Center (www. recallcenter.com) “a brand new medical information site aimed at bringing consumers the most up-to-date FDA information in easy to understand, plain language terms,” according to his e-mail.  I have been looking at the site and am pleased to announce I understood everything I read there… not often the case for me.  Why not take a look for yourself?  There are not that many plain language medical websites available. The more I look at this one, the more I like it.

Until next week,

Keep living your life!

Sometimes I’m Down

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life

Deodorant Doubts

I’ve been playing around with the idea of a newsletter concerning which beauty and hygiene products are safe for Chronic Kidney Disease patients. (Free feel to ‘steal’ the idea.)  Here’s why: every day I use deodorant and every time I pick up the container I’m reminded of the warning on it, “Ask a doctor before use if you have kidney disease.”warning

I did just that about three years ago. At first, my nephrologist was seemingly annoyed at the question, almost as if no one had ever asked him that before. (Is that possible?) I imagine he had his P.A. check a deodorant container because he did have her call me back to say that was only for late stage CKD.  Notice there’s no explanation in that message and, yep, this is the nephrologist I no longer see.

Last week, I did the marketing as I usually do lately since Bear is waiting for surgery on his foot and having a hard time walking much less carrying.  Deodorant was on the list I’d written. I picked up one brand, then another, and a third.  I decided to look at all the brands available and they all had that same warning. Why had I never researched this before?

Good question.  I’m a firm believer in it’s never too late.  Rather than a discussion of which brands are safe for those of us with kidney disease, I’ll be going into the mechanics (if that’s the right word) of deodorant and kidney disease.

exercisingI found a clear explanation of just what function deodorant serves. “Contrary to popular opinion, most deodorants do not just cover up odor with fragrance. They actually have antiseptic properties that work to kill bacteria, which is what causes odor to begin with.” Thank you ww.essortment.com/health-beauty-deodorant-vs-antiperspirant-60155.html.

According to Dr. Nathalie Beauchamp in a January, 2010, article at http://EzineArticles.com/5287990, the culprit is, “Propylene Glycol – found in thousands of cosmetic products – to help moisturize. It is also an ingredient used in anti-freeze and brake fluid, so it’s no surprise that it could cause liver abnormalities and kidney damage.”

I was surprised since I’d always assumed it was the aluminum in the deodorant that was the problem.  It made sense to me that, since American women tend to shave their underarms, ingredients are more easily absorbed into the skin, build up in the body, and then cannot be easily excreted by already compromised kidneys.  Although, according to the article above, aluminum may contribute to Alzheimer’s. Apparently, it builds up in the brain. Shows you what I know… or thought I know!

But then I found The American Association of Kidney Patients post from a 2008 article by Dr. Nathan Levin in RENALIFE, “Most of the antiperspirants and some deodorants contain aluminium (Al), which is absorbed by the skin (Flarend et al – Food Chem Toxicol, 2001). In healthy people, it gets eliminated by the kidney, but for people with reduced function, Al will accumulate in the body. Albeit unusual, this could lead to dementia (Carpenter et al. – Int J Occup Med Environ Health, 2001), anemia and bone disease (Jeffery et al. – J Toxicol Environ Health 1996).”aluminum

So now we know the build-up of aluminium is also a problem.  This goes right back to compromised kidneys not being able to eliminate the chemical that enters our bodies via the skin.  As mentioned earlier in this blog, women are at risk since they shave their underarms (leaving very small cuts in the skin), but men are also at risk.  The chemical is applied to the skin, is absorbed, and builds up.

I did find a reason for the warning against antiperspirants, but keep in mind that these actually close the pores through which sweat is exuded and are not quite the same as deodorants which work on bacteria once the sweat has already been exuded.

In general, the new warning statement is meant for patients with kidney disease who may not be able to excrete the low levels of aluminum in the body that may result from antiperspirant use. This would be individuals with advanced chronic kidney disease (corresponding clinically to stage 4 or stage 5 chronic kidney disease1). Such individuals have approximately 30% or less of their original normal kidney function.  If you have any questions about whether you have such a chronic reduction in your kidney function, you should discuss it with your doctor.”

The entire warning and discussion of it can be found at: http://www.asn-online.org/facts_and_statistics/Antiperspirant%20Warning%20QAs.pdf which is on the website of the American Society of Nephrology.

If you’d like to do more research yourself, take note that I got very few hits when I used ‘Chronic Kidney Disease and deodorant,’ but quite a few with ‘CKD and deodorant.’

On another note entirely, I’ve been talking quite a bit about SlowItDown, my project to bring CKD education by trained educators on a monthly basis for free to any community that needs it.  This is all part of my passion to spread this information, as are the Facebook pages and twitter accounts for SlowItDown and What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Come to think of it, so is this blog.Book Cover

I did tell you that when I researched inexpensive CKD information for readers in Germany and India who requested it, my book was the first item on both lists, right?  I’m pretty sure I told you that when a nephrologist from India contacted me for ways to get the information into his destitute patients hands, I figured out I could send him the first issues of the blog – which were the book – for him to translate and leave in nephrology offices and clinics for the patients to read or have read to them.

Amazon is starting a really helpful program for their Kindle. (By the way, although I am an aficionado of REAL books, I also have already worn out one Kindle.) If an author chooses, you can buy a greatly reduced in price edition of the digital book when you purchase a print copy of the book.  I chose it. As it stands now, the print book is $12.95 and the digital edition is $9.95.  Once the program is in place, the print book will still be $12.95, but the digital edition you can buy when you purchase the print book is only $2.95.  Many thanks to Amazon for yet another way to get the word about CKD out to the people who need it.Kindle

Until next week,

Keep living your life!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,The Table

Keep living your life!

It Is Not All In Your Mind; It’s In Your Organs, Too.

It’s National Kidney Month and National Kidney Day on March 13th is coming up fast, so – naturally – the Southwest Nephrology Conference was this past weekend.  It was the usual   Az. Kid Walk pleasure to see Dr. James Ivie, Director of Patient Services at The National Kidney Foundation of Arizona.  The man is wonderfully generous and will be distributing business cards for the book and blog at the Arizona Kidney Walk on April 7th at Chase Field as he allowed Dr. Jamal Atalla from Arizona Kidney Disease and Hypertension Center (AKDHC) to do at the last KEEP (Kidney Early Evaluation Program) event here.

I am up to my elbows in wedding preparations and had to push to make the time to attend the conference and, other than the non-renal diet food (geared to nephrology related practitioners, not patients), I was glad I did.

So much of the material was right up my alley, even though I’m what’s called ‘Allied Health’ rather than medical practitioner. True, I couldn’t quite understand the very technical medical issues, but what I did understand is worth sharing here.

There’s so much to share that I wasn’t sure what to concentrate on this week… until I spoke with Nima. We went from discussing my great-niece’s first birthday party to Nima’s god-mother’s youngest granddaughter’s Bat Mitzvah to lithium. That part of that family has a number of male members who have taken lithium for extended periods for bipolar disorder years ago.

According to Wikipedia, “Trace amounts of lithium are present in all organisms. The element serves no apparent vital biological function, since animals and plants survive in good health without it. Nonvital functions have not been ruled out. The lithium ion Li+ administered as any of several lithium salts has proved to be useful as a mood-stabilizing drug in the treatment of bipolar disorder, due to neurological effects of the ion in the human body.” The operant word in this definition is SALTS.  You can read more about lithium at:   http://en.wikipedia.org/wiki/Lithium.

There were two Plenary Sessions.  It was at the second one, “Psychiatric issues in kidney patients” presented by Dr. Christian Cornelius from Phoenix’s own Banner Good Samaritan Medical Center (where two of Cheryl’s grandchildren were born and also where she was diagnosed with the colorectal cancer that ended her life) that I suddenly sprang into attention again.

Hey, it had been a long morning and lunch was coming up soon.  I hadn’t been able to eat the mid-morning snack of cookies, soda, or coffee. I was tired from getting up at 5:30 to get to the conference down in Chandler in time. Tired and hungry – not the greatest combination.

cookiesWhat was this man saying?  Something about lithium doubling the risk for Chronic Kidney Disease?  And I was off… how many psychiatric patients knew that fact?  How many of their caretakers knew that just in case the patient was not responsible at the time of treatment?  What about children?  Did their parents know?  Was a screening for CKD performed BEFORE lithium was prescribed?

26 million Americans have kidney disease that is not yet diagnosed.  What if one of these psychiatric patients belongs to that group?  What if they all do?  Currently, kidney disease is the ninth leading cause of death in the United States.  Ninth!!!  Are these undiagnosed psychiatric patients moving it to the eighth?  And what about the 73 million at risk for kidney disease due to high blood pressure, diabetes, or family history?  Are they being given lithium without screening?  (You can read more facts about kidney disease at: http://www.kidney.org/news/newsroom/factsheets/FastFacts.cfm.)

I decided to dig deeper, as I often do.  Again and again on different sites about side effects of different psychiatric drugs, I found warnings that patients need to have a complete medical exam before starting the drug and then periodical exams to check whether or not the patient has developed some damage from taking the drug.  Here’s my question: do these exams include kidney screening?lithum

First I looked at my Twitter feed and found this at: http://www.winnipegfreepress.com/local/screening-for-kidney-disease-on-first-nations-193767521.html

“The $1.6-million federally funded project — First Nations Community Based Screening to Improve Kidney Health and Dialysis — will launch in March.

The project, co-led by Manitoba First Nations’ Diabetes Integration Project and Manitoba Health’s Manitoba Renal Program, provides early detection and treatment to several First Nations communities.

Detection of the disease in people as young as eight can take less than 15 minutes.”

The article deals with a KEEP type program for some Canadian First Nations and is included here to demonstrate the growing awareness of the need to screen for kidney disease, not to infer that First Nations have psychiatric disorders.

Other than that article, there is nothing about screening for kidney disease.  If medical practitioners aren’t aware of the prevalence of CKD – and, obviously, I am not referring to the entire medical professions – how can psychiatric practitioners be expected to know to do this?

I am not a psychiatric patient, not even for minor psychiatric issues, so I don’t know what the screening process is first hand.  However, I do know people who have confided in me (no names for privacy’s sake) that they are taking drugs for some psychiatric condition.  Big mouth here always asks what effect that drug might have on their kidneys… or liver for that matter since such drugs may hit the liver negatively.

That is not enough.  We need a lot more big mouths to ask the right question about drugs: How will this affect my kidneys?

I’m asking for one, no two, wedding presents from each and every one of you.

  1. Have yourself tested for kidney disease
  2.  Before you take any drug for any reason, ask how it will affect your kidneys.

Wow!  You have it in your power to make me a happy bride.  Please do it for your sake and mine.  wedding dress

Until next week,

Keep living your life!

What’s The Word I’m Looking For?

This is what I woke up to today:                                                       

 Decreased kidney function leads to decreased cognitive functioning

Decreased kidney function is associated with

decreased cognitive functioning in areas such

as global cognitive ability, abstract reasoning

and verbal memory, according to a study led by

Temple University. This is the first study describing

change in multiple domains of cognitive functioning

in order to determine which specific abilities are

most affected in individuals with impaired renal

function.

EurekAlert! managed to blow whatever was left of my mind before I even had my morning coffee. (I do relish those two cups of this java joy a day.)

I was stunned. I know I’ve been grasping for the right word when I speak and wondered why this was happening at the relatively young old age of 65. I’d accepted this would eventually happen, but later… you know, when I was old.

I started thinking about cognitive functioning and wondered what that really meant to me as a chronic kidney disease patient.

According to Mosby’s Medical Dictionary, 8th edition, cognitive function is defined asan intellectual process by which one becomes aware of, perceives, or comprehends ideas. It involves all aspects of perception, thinking, reasoning, and remembering.”

Is that why I’m so slow to pick up the clues other people are dropping all around me?  Is that why I have sudden revelations about a comment or an event days, sometimes weeks, after they occur?

I took a little break just now to brush the retainer the sleep apnea dentist had fashioned for me. While doing so, I idly glanced at the sun-catching mock stained glass hanging over the utterly useless garden tub (Does anyone know the purpose of these things?) and the truly ugly duct tape I’d covered the window surrounding it with ten years ago.

Why had I never simply removed that ugliness?  There is a shade covering the entire window – mock stained glass and just plain glass – which I could lower if I wanted privacy. How is it I’d been bothered by the ugly gray duct tape for ten years and never realized it wasn’t necessary?  Was this part of ckd creeping up on me before I even knew I had it?  This does not bode well.

I have slowed down.  There is no question (Hah! I was about to write “in my mind,” but that would be cognitive, wouldn’t it?) of that. I see it in the way my lists have lists of their own.  I see it in my preference for doing film where you only need to memorize a few scenes each day, instead of theatre where you need to have the entire script memorized before the play opens. And I see it in the way I have to carefully order – in writing – what I’d like the class to learn each day for my college work.  I’ll miss that off the cuff ability I seem to have lost.

But wait a minute, what is this “global cognitive ability”?  Back to the dictionary.  I couldn’t find anything for global, but we   know that means across the board or including all aspects so I didn’t delve   any further into that part of the phrase. The American Heritage Medical   Dictionary tells us that cognitive ability is, “The mental faculty of   knowing, which includes perceiving, recognizing, conceiving, judging,   reasoning, and imagining.”So we are slower at these skills since we have ckd.  Add to that the slowing down we usually   associate with age and we are slower yet.

Well, no wonder I’ve noticed I’m slowing down! I have two separate causes for that.  But here’s the important part for me: I am simply slowing down a bit.  I am not stopping.  I am not giving up because it’s taking a little longer to figure out what it all means and what that word is I’m looking for.  So there is only one image in today’s blog.  Big deal!  I’ll live… and so will you.

There’s an old writer’s joke that is apt here.

Question: What is a synonym?

Answer: The word you use that means the same as the one    you wanted to use but forgot how to spell.

 It will get done, whatever it is.  I’m actually sort of comforted that there is a reason for my lapses, my stopping to think a little harder.  I’ve also noticed that my students seem to   think I’m smarter than I am when I do this. It’s that little five second delay while I choose my words that does it.

Lest you start to become upset at this study’s findings, I’m including a quote from the study which should set your mind at rest (I simply cannot avoid using that word today.).

“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

Bottom line: Everything affects everything, so why worry? Follow your renal diet, exercise, sleep and take any medications you need to.  Then have a good laugh (preferably at your own expense) and call me in the morning.  The findings of the study don’t change anything; they just help us understand.

Until next week,

Keep living your life.