Sex?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Communicate with your partner or others about how you feel.

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

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

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

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

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

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

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

Until next week,
Keep living your life!

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This Former Hippy Wannabe Likes HIPAA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Good Grief!

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

Until next week,

Keep living your life!

*The links to Alan’s obituaries:

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

Shocked

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

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!

Here, There, and Everywhere

I was thinking about the AAKP Annual National Meeting coming up in September. You see, I’ve never been to one. Years ago, when I first started writing about Chronic Kidney Disease a reader asked if I’d be there. I was almost a decade younger then and had lots on my plate: teaching college classes, acting, writing, being an active mother, and getting used to my new diagnose. I had no time to run off to meet a bunch of people with the same disease. I didn’t even know anyone there!

Yep, things have changed for me. I’ve retired from both education and acting as of 2013, my children are out of the house although we still have almost daily contact, and I’m better at dealing with CKD. So I’m going. I thought you might like to know something about this group since it was started by patients for patients.

AAKP is the acronym for the American Association of Kidney Patients. I am flabbergasted that six patients in Brooklyn, New York, started this group in 1969 while they were undergoing dialysis and that today AAKP reaches one million people at all stages of kidney disease. I’m a member as of last week. Did I mention that membership is free? This year’s meeting will be in St. Petersburg, Florida from September 8th to the 10th.

I also shied away because I thought they’d have nothing to offer me since I’m stage 3 and the association was started by dialysis patients. I was wrong. Some of the General Sessions deal with national policy and kidney disease, innovations in kidney disease care, patient centered kidney disease care, and the kidney friendly diet. This is not all of them, just the ones I’m interested in.

The smaller Breakout Sessions that might interest others in the early or moderate stages of CKD are social media, dental health, clinical trials, staying active, veterans’ health, lab values, and vaccinations. But that’s not all: there’s even lunch with the experts on the first two days. The topics range from transplant, caregiver, advocacy, cooking, and support groups to acute kidney injury. I mentioned those areas that interest me, but there’s more, far more.

Before I start to sound like I’m selling you a product, here’s their web site so you can explore this association and national meeting for yourself: https://aakp.org.

Let’s say you don’t want to travel. How else can you partake of the kidney patient world, the part of it that doesn’t deal with going to the nephrologist or renal dietician? Well, have you heard of Renal Support Network at http://www.rsnhope.org/? Lori Hartwell has had kidney disease since she was two years old and wanted to instill hope in those with the disease. Now you understand the URL. There are also podcasts about kidney disease at http://www.rsnhope.org/kidneytalk-podcast/ or you can go through the menu on their home page.

Here’s something you can do to help other kidney patients and maybe, just maybe, see your work in print.

Calling all Storytellers who have kidney disease, Share your Experience!

Enter RSN’s 15th Annual Essay Contest.
This year’s theme is “Describe a positive decision that you have made about your healthcare.”
First Prize: $500, Second Prize: $300, Third Prize: $100
Winning essays will be published on RSNhope.org and in Live&Give newsletter

Lori was especially helpful to me when I was first starting out in CKD awareness advocacy. I think you’ll find something of interest to you on her website, although I’ll bet it won’t be the same something for any two people. What I especially like is the Health Library with articles on varied subjects.

Further afield, The Bhutan Kidney Foundation is doing an Amazonian job of spreading kidney disease awareness. I am constantly reading about their walks and educational meetings, as well as governmental initiatives. I think they may even have a Facebook page. Let me go check. Hi again. I’m back and they do.

Have you heard of Mani Trust? This is an India based group that strives to provide humanitarian help to individuals and their country, including those suffering from kidney disease. We know this is not a Western-part-of-the-world-only problem, but I wonder if we realize just how widespread it is.

Remember I told you about the CKD awareness presentation I offered at a global conference several weeks ago? I found astounding facts from World Life Expectancy at http://www.worldlifeexpectancy.com. One of the most striking facts I included in that presentation is that globally 864,226 people  died of kidney disease last year. That makes kidney disease number 15 in the cause of death hit parade.

In Malaysia, there were 2,768 deaths due to kidney disease, over 2% of the country’s total population. In Albania, there were 443, that’s also close to 2% of the country’s total population. Ghana had 2,469 deaths, which is 1.3%.  Egypt? 15,820, which is almost 3½ %. Here in the United States, there were 59,186 deaths, which is almost 3% of our population. What’s my point?

Kidney disease is a global problem. I don’t know what I can do to help in other countries in other parts of the world, but I do know what I can do to help here… and what you can do to help here. If you’re able to, attend the national meetings and local conferences about kidney disease and spread whatever new information you’ve learned. If you are unable to travel, keep your eye on the Facebook kidney disease pages which often have files and delve into them. Share this information, too. If you don’t travel and you’re not on a computer, register for mailing lists and share information from them, too. Of course, check everything you read with your nephrologist before you share and use the advice yourself.

 

You’ll find a blog roll – a list of kidney care and awareness organizations – on the right side of my blog. Why not explore some of these and see which ones appeal to you? If you like them, you’ll read them. And, hopefully, if you read them, you’ll share the information. According to the latest CDC findings, more than one out of every seven people in the United States has CKD. Let’s try to change those figures. By the way, you can read more about this at https://www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf.

Until next week,
Keep living your life!

And I Shall Dance the Night Away

Once upon a time, there was a little girl who loved to dance. Her parents were ballroom dancers: smooth, gliding, and delightful to watch. She ballroomwanted to do that, too, but there were no ballroom lessons for little girls at that time. She took a tap lesson or two, but the dance school was too far away for her to walk or for her driving shy mother to drive.

Then there was nothing until her junior high school offered dance lessons during the physical education period, all kinds of dance: square, cha-cha, rhumba, mambo, salsa, waltz, foxtrot. That’s when she realized her parents were her best dance teachers… and that dancing was in her blood. When she hit college, she went dancing with her buddies every chance she got. At that time, it was clubs.

Eventually she married, had a family, and only danced at weddings. It wasn’t such a happy time for her. But her children grew older and she found she could bring them to swing dances with her. She was happy again. One of these children grew up to initiate and teach blues dance lessons every week.  She was ecstatic.

That group is Sustainable Blues, Phoenix, and that child is Abby Wegerski. The little dancer grown up? It’s me, as if you hadn’t guess by now. And here’s comes the reason for the dancing introduction to this week’s blog.

We have Chronic Kidney Disease; we need to exercise at least half an hour a day for five days a week, daily if possible. This little tidbit from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains why:What is it

“I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger.”

I went into this just a bit further in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

“With Chronic Kidney Disease, I need the daily exercise to keep my organs – all of them – strong, especially since CKD can eventually affect your IMG_2982other organs.  It’s our not-quite-filtered blood that feeds these organs, so we need to keep them healthy in as many ways as we can.”

Okay. Got it. Now the biggie: Is dancing the exercise we think it is?  I turned to WebMD at http://www.webmd.com/fitness-exercise/features/dancing-your-way-to-better-health#2 for the following:

(Exercise physiologist Catherine Cram, MS, of Comprehensive Fitness Consulting in Middleton, Wis. is the one being quoted.)

“Once someone gets to the point where they’re getting their heart rate up, they’re actually getting a terrific workout….Dance is a weight-bearing activity, which builds bones. It’s also wonderful for your upper body and strength, says Cram.”

Weight-bearing? I wasn’t so sure I could accept that so I turned to the National Institute of Arthritis and Musculoskeletal and Skin Diseases at http://www.niams.nih.gov/health_info/bone/Bone_Health/Exercise/default.asp for verification.

“The best exercise for your bones is the weight-bearing kind, which forces you to work against gravity. Some examples of weight-bearing exercises include weight training, walking, hiking, jogging, climbing stairs, tennis, and dancing.”

Look at that last word. Finally! My weight is working for me, instead of against me. Of course, I am in no way suggesting you gain weight so you can get more of the weight-bearing benefits of dancing. You know that, don’t you? Don’t you????

But that’s not the only benefit of dancing as a weight-bearing exercise. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, FullSizeRender (3)Part 2 I included part of a Los Angeles Times article about weight-bearing exercise. Potteiger is Jeffrey Potteiger, an exercise physiologist at Grand Valley State University in Grand Rapids, Mich., and a fellow of the American College of Sports Medicine.

“’Another big advantage … is improving glucose metabolism, which can reduce the risk of diabetes. Strength training boosts the number of proteins that take glucose out of the blood and transport it into the skeletal muscle, giving the muscles more energy and lowering overall blood-glucose levels.If you have uncontrolled glucose levels,’ Potteiger said, ‘that can lead to kidney damage, damage to the circulatory system and loss of eyesight.’”

I found the following list on the website of  Australia’s Victoria State Government Better Health Channel at https://www.betterhealth.vic.gov.au/health/healthyliving/dance-health-benefits after a bit of digging and liked how succinctly it demonstrated just how much we benefit ourselves when we dance.

 Health benefits of dancing

Dancing can be a way to stay fit for people of all ages, shapes and sizes. It has a wide range of physical and mental benefits including:

  • improved condition of your heart and lungs
  • increased muscular strength, endurance and motor fitness
  • increased aerobic fitness
  • improved muscle tone and strength
  • weight managementdepression-cause-heart-attack-1
  • stronger bones and reduced risk of osteoporosis
  • better coordination, agility and flexibility
  • improved balance and spatial awareness
  • increased physical confidence
  • improved mental functioning
  • improved general and psychological wellbeing
  • greater self-confidence and self-esteem
  • better social skills.

Wow – just wow. Who knew that the little girl who loved dancing would grow up to be the woman who used what she loved to help keep her Chronic Kidney Disease under control?

After all this good news – actually joyful to me – I unfortunately have to end this week’s blog on a cautionary note. It’s been brought to my IMG_2980attention that students are still being tricked into wasting their money by renting my Chronic Kidney Disease books for more than it would cost to buy them or asking their libraries to order copies to be borrowed for free . So, here’s the same warning I published earlier this year in SlowItDownCKD 2015.

“Students: do NOT rent any of these (e.g. my CKD books) for a semester.  The cost for that is much higher than buying the book.  Having been a college instructor, I know you sometimes have to buy your textbooks before the class begins and the instructor has the chance to tell you this.”

College has changed. It’s no longer two or three terms a year. Many college classes have staggered start dates, some weekly, some graduationmonthly. Many of the duped students used their financial aid money to pay these book rental companies. Be careful, students.

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!

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!

Sex Sells… Well, It Keeps Us Interested Anyway

National Kidney MonthHappy Monday, blog writing day, my favorite day of the week.  You know, this is the third week of National Kidney Month which brings quite a bit of kidney disease awareness activity with it. For example, this past Friday and Saturday, The National Kidney Foundation of Arizona held its 17th annual conference in partnership with The CadioRenal Society of America.

I attended on Friday, renal day, since Saturday – cardio day – was a bit too over my head. I had the good luck to run right into Dr. James Ivie, Director of Patient Services, as soon as I entered the building. After I apologized for not having a book for him this year (SlowItDowCKD 2015 is available in digital, but the print version won’t be ready until later on this month.), he told me how very successful the conference was this year, easily surpassing the number of attendees from the year before.

He was so right. I could see for myself that the place was crowded and people were talking. More than one vendor was more interested in my CKD writing than in selling me their product. I was surprised, but delighted. Then I started attending the sessions and found the same with other attendees and, again, was delighted.Kidney Arizona

But what delighted me most was how much I understood.  You see, the more I understood, the more I could bring back to you. As usual, presenter styles varied from the one who simply read the statistics on her slideshow graphs for us to the one who told anecdotes, asked for audience participation, and had us both laughing and highly interested.

Her topic?  Enhancing Intimacy and Sexuality. Her name? Robin Siegel. She is a licensed clinical social worker. Learn.org at http://learn.org/articles/What_Does_LCSW_Stand_For.html tells us “An LCSW, or licensed clinical social worker, is a professional who provides counseling and psychosocial services to clients in clinical settings.”

Ms. Siegel was actually presenting about how nephrology staff can be helpful in these areas, but quite a bit of her information was also useful for Chronic Kidney Disease patients themselves… or those that write about CKD.

Hmmm, her ideas sounded familiar to me. Sure enough, it seems I had been thinking along the same lines when I wrote the following in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

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

The usual remedies for E.D. can be used with CKD patients, too, but you need to make certain your urologist and your nephrologists work together, especially if your treatment involves changing medications, hormone replacement therapy or an oral medication like Viagra. …

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

Ms. Siegel added to this by talking about possible medical intervention traumas, cultural values, and gender issues. What Is It and How Did I Get It? Early Stage Chronic Kidney Disease was written in 2010, although it was published in 2011. Transgender was hardly, if ever, mentioned in the news – medical or otherwise. It was almost the same for homosexuality. It’s a different world in 2016. We talk openly about sexuality. Well, let’s say many of us do. I really liked the way this presenter made it clear that these are simply part of some patients’ lives and must be treated respectfully, especially when dealing specifically with their sexuality.IMG_2867

We agreed about intimacy, too. More from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too.        And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful….  The best advice I received in this area was make love even if you don’t want to.  Magic.”

Those last thoughts are purely mine, but Ms. Siegel did talk about the snuggling and hugging from a patient point of view: allowing, giving, getting.

Something else she introduced was the different cultural values in our present day society. That’s another thing that wasn’t as publicly prevalent as it is today. For example, certain cultures will not permit a male doctor if the patient is female. If you belong to one of these cultures, you can simply ask for a female nephrologist in the practice or for a referral to another practice with female nephrologists if yours doesn’t have any. (What???  In this day and age!!!!) According to one of my Muslim friends, there is a list of female doctors, including specialists, available in her community.

Other cultures will not allow eye contact. This is important for you to let your nephrologist know about so that he or she will not think you are avoiding topics if this is part of your culture. Sometimes written material such as handouts and pamphlets can allow you access to the same information you would have been told, too.

It seemed to me that Robin Siegel was making clear that there is no problem that can’t be attended to by your nephrologist or his/her staff – even sex and intimacy – with just a bit of adapting to whatever the patient’s (Oh, that means you and me.) sexuality and culture.

IMG_1398

I have been receiving all kinds of laudatory comments about The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 since SlowItDownCKD 2015 was published in digital last week. I like how that works: publish a new book and there’s renewed interest in your others. Feel free to write reviews on any and all of my four CKD books.

Until next week,

Keep living your life!

Proof Positive

Name

Standard Range

 5/29/15  9/4/15
TSH

0.450 – 4.500 uIU/mL

 1.900  3.480

diabetes

Name

Standard Range

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

0.0 – 17.0 ug/mL

29.7 38.9

Glomerulus-Nephron 300 dpi jpg

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

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

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

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

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

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

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

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

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

Convert Deciliters To Fluid Ounces

Quantity Deciliters Fluid Ounces

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

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

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

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

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

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

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

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

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

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

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

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

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

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

11990439_10204944411870363_4775265224050810062_n

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

IMG_1398

 

Until next week,

Keep living your life!

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

Sexy!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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

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!

 

 

Sleepus Interruptus

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

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

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

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

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

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

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

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

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

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

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

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

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

This particular study was conducted in 2005.

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

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

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

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

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

This is from a 2010 study.

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

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

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

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

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

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

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

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

   with age.”

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

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

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

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

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

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

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

to be eliminated.”

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

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

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

Until next week,

Keep living your life!

Facebook and CKD

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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

Timidly Exploring Dialysis

We are a Landmark Education family; that is Nima, Abby, and I are all Landmark Education graduates.  Abby has taken many of their enlightening courses and was candidated as an Introduction Leader.

In other words, she demonstrated her willingness to bring Landmark Education to others and now knew enough about the program to be able to do so.  This is a big deal in the Landmark world and it was celebrated Friday night.

Of course Bear and I went to the celebration to support her.  We even got dressed up a little (this IS Arizona – people go to weddings wearing jeans.).  Since I recently retired – yes, again – from teaching, I went right to my teaching clothes to find something appropriate to wear tonight. landmarkqr

While I’ve only gained a few pounds (no, really), my body has finally decided to show my age.  Out went the tightly fitted dressy tee shirts that accentuated the belly.  Out went the fancy blouses with no room for the droopy bust. Out went the casual dress pants with their tight waistlines. Out went the maxi skirts that now reached the floor since I’ve shrunk.

And it struck me.  I looked something like the peritoneal dialysis patient Walter A. Hunt mentions in his book Kidney Disease: A Guide for Living: “ Peritoneal dialysis also causes weight gain and an increased waistline, which are mostly caused by fluid retention.  It may be difficult to find clothes that fit properly, because your abdomen may become quite large.”

I was reading the book on the recommendation of Mark Rosen from Facebook’s KIDNEY DISEASE AND DIET IDEAS AND HELP 1. Any book he recommends is worth a gander.  I had been looking for a newer book than mine that deals only with early stage chronic kidney disease. (There aren’t any as far as I could research.) What I didn’t realize is that Mr. Hunt wrote about dialysis and transplant in his book.

I began to wonder what else I don’t know about either of these medical procedures and ended up where I always do: MedlinePlus, a service of U.S. National Library of Medicine and National Institutes of Health  at: http://www.nlm.nih.gov/medlineplus/dialysis.html.  This is what I found there:

“When your kidneys are healthy, they clean your blood. They also make hormones that keep your bones strong and your blood healthy. When your kidneys fail, you need treatment to replace the work your kidneys used to do. Unless you have a kidney transplant, you will need a treatment called dialysis.thCAQ0P7T3

There are two main types of dialysis: hemodialysis and peritoneal dialysis. Both types filter your blood to rid your body of harmful wastes, extra salt and water. Hemodialysis  does that with a machine. Peritoneal dialysis uses the lining of your abdomen, called the peritoneal membrane, to filter your blood. Each type has both risks and benefits. They also require that you follow a special diet. Your doctor can help you decide the best type of dialysis for you.”

This may be old news to those of you who are already dealing with renal dialysis and it was to me, too, but what about those people who are still in early stage or who love someone in early stage?  They don’t need to be bewildered when (if) this becomes necessary for them down the road, the way they were when they were first diagnosed with Chronic Kidney Disease.

As much as I deplore the thought of dialysis – I can’t stand anyone fiddling with me, not even for a manicure or a massage – this may become a necessity somewhere down the line for me –  or you.  We all know I intend to be one of the 80% of CKD patients who never progress beyond stage 3… but what if I’m not?  What if you’re not?

I don’t know much about either kind of dialysis, but am learning by forcing myself to research and finish reading Mr. Hunt’s book.  This is something I have studiously avoided in the last five years but I think it’s time to grow up.  I may never need this information, but it doesn’t hurt to have it.

I’ll tell you this, though.  Even though it’s Passover right now and Easter was Sunday, I made the commitment NOT to experiment with foods that are not on my renal diet.  And, since I know these are family heavy holidays, I took time off periodically to sit down and read a book for more than ten minutes at a time so I was at least rested.

While I was the one who invited nine people for Easter dinner (less than a week before our wedding, no less), Bear popped right in and took the stress off me.  He did the meal planning and the shopping.  I just asked each of our guests to make their specialties: Kelly made her creamy mashed potatoes, Lara her grandmother’s recipe cheesecake, Abby the crescent rolls, Sean’s mom Mary Ann the string bean casserole.  Alex brought wine and on and on. easter-dinner

It was pretty clear I needed something I could eat, so Bear brought me turkey, salad, bananas and strawberries.  I didn’t even miss tasting the ham, sweet potatoes, macaroni and cheese or some of the home made food.

I have a confession: I always get the adult children (the youngest is 28 for heaven’s sake!) Peeps and since the adults were disappointed they didn’t get any last year, I got them some this year, too. I know, I know, it’s all sugar and food coloring.

Sometimes, I get glutted by just being with my family.  Maybe that’s why while I might ‘taste’ the foods forbidden to me, I don’t seem to want to eat bunches of them.  Whoa, were the Beatles right when they sang, “All you need is love?”

A nice spring holiday present for me: the book continues to do well in the foreign market.  Let’s see what we can do about moving here at home too.

passoverI hope your Easter and Passover were (and still is in the case of Passover) happy, healthy, and rejuvenating.

Until next week,

Keep living your life!

To Stress Or Not To Stress

I woke up yesterday morning, threw open the windows, and just listened to the birds singing away while the sun shone right in. I was filled with joy that it was Sunday morning, Bear Bearandmewas right next to me, and I could do that.  Then I realized every morning is Sunday morning for me. I live in sunny Arizona and am retired.  The only stress I have is that which I impose upon myself.

I have heard my four grown daughters talk about the stress in their lives and what it seems to be doing to each of them in different ways.  We’re not talking about life or death stress, rather everyday should-I-or-shouldn’t-I stress.  Should I take the new job?  Should I go out with him?  Should I buy a house?  Should I move out of state?  Even (for me) should we have Italian food catered in for our wedding? You know, the usual – and good since so many of them are associated with joyous occasions – life stresses.

Stress?  Hmmm? What does that do to the kidneys? But wait, maybe it would be more prudent to explore just what stress is first.

According to the Free Online Medical Dictionary, “Stress is defined as an organism’s total response to environmental demands or pressures.” The site goes on to explain the description, causes, symptoms, diagnosis, treatment, alternative treatment, prognosis and prevention of stress.  While this was interesting reading, it’s not quite germane to the kidneys.  You can find all this information at: http://medical-dictionary.the freedictionary.com/stress

Alright.  We have those demands or pressures. (I distinctly remember my stress about whether or not to allow my youngest to attend a preforming arts high school across the bay from our Staten Island house in New York City.  It would mean a bus, ferry, and subway ride each way to the tune of an hour and a half… without me!)

But what is our organism’s total response?  You’ve got to remember we respond the same way whether the stress is positive (I always, without fail, experience a few minutes of stress before I go on stage or the cameras start rolling) or negative (like when we were told we need a new air conditioning system and we realized that meant the honeymoon will have to wait).stress

Ready? First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes (blood sugar) and hypertension (blood pressure) both play a part in chronic kidney disease.

If you still haven’t resolved the stress, additional hormones are secreted for more energy.

Still no resolution?  Not good.  Years, even weeks, of stress can “affect the heart, kidneys  {and doesn’t affecting the heart also affect the kidneys?}, blood pressure  {uh-oh, that also affects the kidneys.} stomach, muscles and joints.”  The comments within the brackets are mine.  Thank you to www.comprehensive-kidney-facts.com/stress-management.html for the rest of the information.

blood pressure 300dpi jpgFor those of you who want more technical explanations, I turned to eHow (I think I’m a little bit of a snob here since I’m surprised when I’m directed there in a medical search). According to www.ehow.com/facts_5929145_effect-stress-hormones-kidney-function.html, “The combination of vasoconstriction {that means ‘the narrowing (constriction) of blood vessels by small muscles in their walls. When blood vessels constrict, the flow of blood is restricted or slowed” http://www.healthscout.com/ency/1/002338.html } and increase in blood volume (because of water retention) raises  blood pressure, which can, over time, translate into chronic hypertension {high blood pressure}.  Persistent water retention as an outcome of prolonged elevations in stress hormones can also produce edema {swelling}.”

And that’s only a part of a total medical explanation.  There’s more that stress does to the kidneys but if you think I explained quite a bit in this part of the explanation, I need to tell you that this was the easiest part of the explanation to understand with some help.

Stress management seems to be part of keeping our already compromised kidneys from deteriorating even more.  Naturally, the next question should be what IS stress management?Book Cover

You’re already exercising half an hour a day (You are, aren’t you?) That’s to control your weight, blood pressure, cholesterol and triglyceride levels. To quote myself from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, “The greater your triglycerides, the greater the risk of increasing your creatinine.”  Me again: “Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger.” So it’s no great surprise that exercise also lowers your blood pressure, even when it’s been raised by stress.

At http://www.holisticonline.com/herb_home.htm, you’ll find dietary suggestions to manage stress.  While I don’t agree with all of them (like caffeine, I am NOT giving up my two allotted cups of coffee a day, no way!  They make me feel far less deprived.) and you need to take your renal diet into account, most of them are well worth adhering to.

Smoking and alcohol (contrary to popular belief) will only increase your stress levels.  I’m wondering if we didn’t get the notion they would decrease stress from the movies or television.

Drinking water, but keeping within your daily fluid limits (mine is 64 ounces, which includes any liquid or frozen liquid such as jello), can also reduce stress as can anything that relaxes you: music, your pet, a warm bath, playing an instrument, etc.

There is stress even with a simple little backyard wedding like ours, which is why I’m so glad to be spending more time than usual with my daughters – a great stress reducer for me – and the new people they’ve been bringing into our lives lately.

Until next week,

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!

The Flu Flew By

‘Tis the season to be jolly… and get the flu.  You’ll be in crowds at your holiday parties, even in stores when you get your shopping done. Everyone’s got to eat, even Scrooge, so you will be in the markets – and crowds – whether you want to be or not.

Uh-oh, so what do you do about the flu? According to Dec. 3, 2012’s MedPage, the flu has arrived early this year.  Bah! Humbug! Just in time for the holiday season.

“The flu season is officially under way about a month earlier than usual, the CDC announced on a call marking the beginning of National Influenza Vaccination Week. {For your information, that was Dec. 2-8 this year} ‘This is the earliest regular flu season we’ve had in nearly a decade, since the 2003-2004 flu season,’ CDC director Thomas Frieden, MD, MPH, said on a conference call with reporters.”Shoppers1

Who even knew there was a National Influenza Vaccination Week? You can read a bunch of statistics about this early flu season at: http://www.medpagetoday.com/InfectiousDisease/URItheFlu/36225?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2012-12-04&eun=g596983d0r&userid=596983

Reminder: as a chronic kidney disease patient, you already have a compromised immune system.  Help yourself to avoid the flu by getting that vaccine.  In some cases (you’ll have to ask health care worker if you are part of this group), you may be able to take the nasal vaccine.  This is especially helpful if you have a great dislike for injections, but if you can’t because you have ckd, just look away during the shot.  That has been proven to make it easier to handle the fear, as I wrote about in an earlier blog.

By the way, Medicare covers the cost of the flu shot.

So, again I ask what do you do about the flu? According to Healthfinder.gov, you can protect yourself from the flu by doing the following:

Getting the flu vaccine is the most important step in protecting yourself from the flu. Here are some other things you can do to keep from getting and spreading the flu:

  • Stay away from people who are sick.
  • If you are sick, stay home for at least 24 hours after your fever is gone.
  • Wash your hands often with soap and warm water.
  • Try not to touch your nose, mouth, or eyes.
  • Cover your mouth and nose with a tissue when you cough or sneeze

The entire article about the flu may be found at: http://healthfinder.gov/prevention/ViewTopicFull.aspx?topicID=18

Most of this sounds fairly obvious. But then Bear told me about someone at work who simply sneezes and coughs into the air around him. That got me to thinking.  Do you find yourself shying away from certain people who do the same?  Maybe you should.

Since the cataract surgery and the sealing off of my tear ducts, I am always touching my eyes to wipe away the extra moisture. Until I read this article, I’d always thought of myself as someone who doesn’t keep touching my face.  But that’s not true, is it?

And how many people in this economy really do take off from work for 24 hours after their fevers break?  Who can afford to do that? We have people struggling to hang on to minimum wage positions while a string of other people are ready and waiting for these same jobs.

It’s worth thinking about this yourself.  Remember when we were taught to cough or sneeze into the inside of our elbows?  Looks like that’s not as effective as stopping the particulate spray immediately at its source – your nostrils.  Makes sense to me.

We live in Arizona.  It’s so dry we try NOT to wash our hands since that dries out the skin.  I’m not saying we’re a dirty demographic, simply that we try to wash our hands only when necessary. That is not often, but it needs to be during flu season.

fluBut have hope!  According to Rob Stein on NPR’s Health News, “One big difference between this year and the 2003-2004 season is that so far the vaccine appears to be a very good match for the strains of flu that are circulating most widely. That’s important because one of the reasons officials are concerned is that one of the strains is similar to the 2003-2004 strain that caused so much illness and so many deaths.”

I think that’s good news.  It sounds like good news.  Is it good news? Why DID the 2003-2004 strain cause so much illness and so many deaths?  Somehow, that’s not as reassuring as I’d like it to be.

The original article is at: http://www.npr.org/blogs/health/2012/12/07/166745954/unusually-early-flu-season-intensifies?ft=1&f=103537970

I wondered how to tell the difference between a cold and the flu.  Since being diagnosed with ckd, I make it a point to take the flu vaccine annually, yet there have been times when I just didn’t feel that well. I found my answer in the following: http://abcnews.go.com/health/t/blogEntry?id=17885194

“ ‘With influenza you might also feel very poorly, with aches and pains in your muscles and joints,’ said Dr. William Schaffner, chair of preventive medicine at Vanderbilt University Medical Center in Nashville, Tenn. ‘There’s often a cough, too, which is much more prolonged and pronounced.’ ”

That does answer my question.  No muscular aches or pains, so what I experienced was just a cold.

Don’t let yourself become run down with the festivities this year, take the time to relax, maybe even put your feet up and read What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. It’s available in digital – which is less expensive than the book – and print at Amazon.com and B&N.com.

You’ll be in good company.  I’ve gotten notice that personal trainers, doctors, medical assistants, phlebotomists, physicians’ assistants, chiropractors, naturopaths and gym owners have been reading it to understand how better to deal with their clients (or patients, as the case may be) who have CKD.  What a nice holiday present for me.

Here’s my wish that you had a Happy Chanukah and/or are happily preparing for Christmas and Kwanzaa.

Until next week,2012-12-12 19.41.37-1

Keep living your life!

Back To The Salt Minds

Here we are right smack in the middle of Chanukah with Christmas and Kwaanza coming up. We’ve read all the health articles about how to plan our party eating

including the Menorahmenorah lighting and latkes one at our house later this week – and we all know to avoid sodium since it causes so much havoc with blood pressure which causes further problems, right?  Maybe not.

Be prepared to have your minds blown (ahem, I am a child of the 60s):

Scant Evidence That Salt Raises BP, Review Finds

Published: December 04, 2012

The evidence for health benefits associated with salt reduction is controversial and the “concealment of scientific uncertainty” is a mistake, researchers suggested.

salt

Because this is such a treatment shattering controversy, I decided to let the experts speak for themselves. Do go to the following link and listen to them yourselves. (Notice the doctors insist that sodium restriction needs to depend upon the individual patient, not that it should be universally discarded.)

You can read the rest of the article and hear the doctors at: http://www.medpagetoday.com/Cardiology/Hypertension/36248?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2012-12-05&eun=g596983d0r&userid=596983&email=myckdexperience@gmail.com&mu_id=5721543

So, what does this mean for us as Chronic Kidney Disease patients?  Well… let’s go back to CKD basics for a moment.  We are restricted as far as the three ps (protein, potassium, phosphorous) and sodium, not to mention fluid intake and – for some of us – caloric intake.  {That’s odd, these restrictions don’t seem that complicated anymore, but when I type them, they look a bit daunting.}

Okay, so sodium.  Too much sodium can lead to hypertension (or can it?), which may lead to CKD. You already have CKD.  You are still at risk for edema, which is swelling caused by fluid retention in the tissues of the body.  Since this is already a potential problem for CKD patients, why exacerbate it?

This is what I wrote about sodium in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease:

“What makes it worse is that there is no internal mechanism that tells us if we need more or less salt.  CKD sufferers are in a spot because the kidneys are the only route by which to eliminate excess salt.

Basically, sodium balances fluid levels outside your cells.  You need it because it is responsible for watering your cells.  This watering is the prompt for potassium to dump waste [cell process by-products] from your cells. Sodium does deal with other functions of the body, but this is a pretty important one.

If you have damaged kidneys and cannot excrete most of the sodium you ingest, you’re up again higher blood pressure {is that still true?} which may worsen your CKD which may further cut down on your elimination of sodium and so on and so forth in an ever spiraling cycle.  In addition, for CKD patients, too much sodium causes fluid retention, thereby causing swelling, further resulting in weight gain, leading to shortness of breath. That’s why your nephrologist asks if you’ve experiences shortness of breath.”

It gets worse.  Too much sodium can increase your need for potassium. While potassium is a necessity since it “dumps waste from your cells, but also helps the kidneys, heart and muscles to function normally.  Too much potassium can cause irregular heart beat and even heart attack.  This can be the most immediate danger of not limiting your potassium.” (also from my book)                                                                bbq-chips-beer-230

That is a simple, direct and universally accepted explanation of the horrors of sodium for CKD patients.  But is it still true for you?  With these newly uncovered controversies, who knows?  Speak with your nephrologist, but use common sense, too. I would not recommend running for the salt shaker under any circumstances, but is it safe to eat the fresh made potato chips you ordered at the local brewery (not that I drank any beer. Oh – I mean, not that you drank any beer.) when you tasted a bit of salt on them?

We are not an overly social couple, yet we have our Chanukah party, a friend’s huge pot luck, Bear’s work holiday social (Let’s hear it for Rockler’s!  They know how to do it right.), Christmas eve at Sean and Kelly’s (wow, another family tradition torch passed to the next generation) and now I’m playing around with the idea of a quiet champagne and caviar – neither of which I can eat – new year’s eve if that’s something the Arizona grown children and the assorted fiancés and boyfriends or best friends would be interested in.  That’s a lot of food intake planning.

I thought about taking it party by party and that has worked well for me.  Prior to that, I had a forbidden list I carried around in my head.  That was a total bust.  I would become frustrated at all the foods I couldn’t eat even though they were beautifully and enticingly displayed in front of me and just go whole hog.  Then I had to deal with the guilt, to say nothing of the bodily discomfort, that I felt after.

Yes, party by party is better for me. But that’s not all.  I am analytic, so I peruse the offerings and then – slowly – mentally check off what I can ingest, all the while socializing. That works for me. So does the old dieter’s motto: do-not-stay-seated-at-the-table-with-that-wonderfully-aromatic-food-in-front-of-you.  Feeling well armed to go to your holdiay parties with sodium intake well in hand?  Go party!

Until next week,

keep living your life!                       1129852_Christmas_Buffet_Smoked_salmon_Ham_Mini_quiches___Sausage_rolls_Pizza_Mincemeat_Lattice__nibbles_etc

Fat Day

I am being thrust into the 21st century whether I like it or not.  Thank goodness, Bear gave me an iPad for my 65th birthday because my laptop is not so functional these days and my big guy needs all kinds of things installed on it now that it’s fixed. This is a first for me, but I’m one paragraph in and so far, so good. Welcome to iPad blog (#1?).

I feel fat and frustrated today, sort of like this picture: Image  I could do the analyzing thing and decide that the frustration is displaced from not being able to do anything about my buddy’s decision to end her life or my cousin’s running out of options to save hers, but I know I have no control over these tragedies.

I feel fat and frustrated because I know what to do to lose weight, do it and still gain.  It got so that I started to wonder if exercise were worth it.  And counting calories?  That went out the window.  I never did get to the point of abandoning the renal diet, though.  That’s become sacrosanct, the way I wish losing weight was.

Following my usual method when I have a problem, I started researching.  I remembered blogging about brown fat cells, but these were only recently discovered and no one knows how to access them yet.  In case you forgot, brown fat cells gobble up other fat cells or something like that.  I’d have to revisit the blog about them to be more specific, but I fear if I leave this page it will disappear.  This is all so new to me.  You should be able to find it quickly since the computer savvy Ms. Nima Beckie categorized the blogs.  How nice for me to have family who can freelance on the payroll.

I found some information that won’t help me lose weight but makes the frustration lessen.  Lucky for me that I just bought a Groupon for dance lessons and that my youngest daughter, Abby Wegerski, runs Sustainable Blues at The Blooze Bar on 32 Street  ( Sunday nights free lesson at 5 with live band after).  There’s exercise I at least adore and it’s clear to me despite all my belly aching, exercise is very much in my future.

EurekAlert’s article about long term weight loss after menopause gave me pause (sorry, I couldn’t resist.  I think I’m feeling better already.) Obviously I’ve been through menopause, but not so obviously had no idea that because of that my resting metabolism has decreased, so has my losing weight and keeping it off ability despite having no sugary drinks, fried food or desserts.  Well, drastically cutting down on desserts. It helps that I know I’m lactose intolerant, but I certainly am having trouble working gluten sensitivity into my renal diet. You can find this article at: http://www.eurkalert.org/pub_releases/2012-08/ehs-ilw082212.php.

That wasn’t enough for me though.  I wanted to feel that I was like everyone else so I searched some more.  I should mention here that belly fat holds a great deal of my excess weight or, at least it looks that way to me. Why Medical News Today’s article “Belly Fat Increases Risk Of Death Even In People Of Normal Weight” should be comforting is beyond me, but it was and actually lessened my frustration a bit. The article cites a Mayo Clinic study in which it was suggested, “that people of average weight who have extra fat in their stomach have a higher risk of dying than obese people.” Am I interpreting this to mean it’s better to be obese?  I sure hope that is not the case.  The address for this article is: http://www.medicalnewstoday.com/articles/249506.php.

A few things became clear while writing this blog.  I am trying to combine the renal diet with those for high cholesterol, lactose intolerance, and gluten sensitivity. I am not succeeding.  My failure here is probably the cause of my weight gain so I’ll see my renal nutritionist for help, keep on exercising (see you there, Abby) and go right back to counting calories.  Problem solved.

Did you know the book is available in India?  I didn’t. I thought it was only available here and in Europe.  Great work on Amazon’s part.  It’s also available on B&N.com, should you have a Nook.

Until next week,

Keep living your life!Image

The Coffee Blog

Last week’s blog discussed different kinds of drinks.  I mentioned that coffee is my favorite.  Since I’m still recovering from the second cataract surgery and we all know how good it feels to be self-indulgent when you’re recovering, this week’s blog is all about coffee.  I won’t be repeating what I included in last week’s blog, but there is quite a bit of medical information about coffee available.  Let me just pour myself a cup and I’ll tell you….

We’re smiling because we’ve just had COFFEE.

Really? Drinking Coffee Lowers Colon Cancer Risk

Over the years, most studies of the subject have been either small or plagued by methodological flaws. But recently a team of researchers at the National Cancer Institute followed half a million Americans over 15 years. The researchers looked in detail at their diets, habits and health, and found that people who drank four or more cups of coffee a day — regular or decaf — had a 15 percent lower risk of colon cancer compared with coffee abstainers. While the researchers could not prove cause and effect, they did find that the link was dose-responsive: Greater coffee consumption was correlated with a lower colon cancer risk. The effect held even after they adjusted their findings for factors like exercise, family history of cancer, body weight, and alcohol and cigarette use.

The address for this article is: http://well.blogs.nytimes.com/2012/07/02/really-drinking-coffee-lowers-colon-cancer-risk/?partner=rss&emc=rss

And to answer your question about what colon cancer has to do with chronic kidney disease, you have to remember you are medically compromised already. Cancer is a disease caused by inflammation, just as chronic kidney disease  is.  By the way, it’s said that alkaline foods are a better way of eating should  cancer rear its ugly head in your life.

But that’s not all  drinking coffee can do for you:

Coffee Drinking Linked to Lower Death Risk

Older adults who drank coffee—caffeinated or decaffeinated—had a lower risk of death overall than others who did not, according a study by researchers from the National Cancer Institute and AARP. Coffee drinkers were less likely to die from heart disease, respiratory disease, stroke, injuries and accidents, diabetes, and infections.

You can find this information at http://blog.rwjf.org/publichealth/2012/05/17/public-health-news-roundup-may-17-2/

I am an older (thank you for that ‘er’) adult. I absolutely love coffee. I also have chronic kidney disease which may lead me down the primrose path to diabetes.  Perhaps I can prevent that?  Too bad I’m restricted to two cups a day.

This one can get a bit technical so I’ve copied the most easily understood part of it:

Coffee consumption inversely associated with risk of most common form of skin cancer

PHILADELPHIA — Increasing the number of cups of caffeinated coffee you drink could lower your risk of developing the most common form of skin cancer, basal cell carcinoma, according to a study published in Cancer Research, a journal of the American Association for Cancer Research.

“Our data indicate that the more caffeinated coffee you consume, the lower your risk of developing basal cell carcinoma,” said Jiali Han, Ph.D., associate professor at Brigham and Women’s Hospital, Harvard Medical School in Boston and Harvard School of Public Health.

You can find the whole article at http://www.eurekalert.org/pub_releases/2012-07/aafc-cci062612.php

So coffee – formerly universally maligned by the medical community – now can help prevent colon and skin cancer and prolong your life.  I’m liking this very much, but we’re not done, folks.  I’m grinding (love being punny) the sources out right now.

 I am in heaven!  Look what I found at http://www.everydayhealth.com/diet-nutrition/0310/9-healthy-reasons-to-drink-coffee.aspx?xid=tw_weightloss_20120123_coffee (You’ll probably understand my over the top joy if you remember I’ve had both a root canal and a crown replacement so the dentist could reach the cavity underneath the crown  this summer.  Both were so expensive that, even with insurance, I’ll be paying them off well into the new year.)

9 Healthy Reasons to Indulge Your Coffee Cravings

 Coffee gets a bad rap, but study after study shows your java habit is actually good for you. From a lower stroke risk to fewer cavities, here are the best reasons to enjoy a cup or two.

“Coffee is incredibly rich in antioxidants, which are responsible for many of its health benefits,” says Joy Bauer, RD, nutrition and health expert for Everyday Health and The Today Show. Its caffeine content may also play a protective role in some health conditions, but many of coffee’s health perks hold up whether you go for decaf or regular.

According to this article, coffee can help avoid diabetes, skin cancer, stress, cavities, Parkinson’s disease, breast cancer, heart disease, and head and neck cancers.

Parkinson’s disease runs in the family, too.  That’s another reason I’m so happy to have found this article.

One of the most romantic acts my sweet Bear performs is bringing me a cup of coffee to wake me up each day.  Sharing that time as we drink our coffee in bed cements the connection between us.  Could be I’m mixing up coffee and love, but there does seem to be some kind of interaction there.

My neighbor Amy – one of the busiest people I know – makes time to come over for a cup of coffee whenever she can.  She gets an hour’s break from her three kids and household duties or gets to de-stress from her work day and I get the pleasure of her company and hearing what’s going on in her life.

There’s more to coffee than caffeine.

An aside: talk about over problem solving – I just happened to notice that I can link websites from wordpress, too.  I seem to be doing a lot of that over stuff as I get older!

Until next week,

Keep living your life!

The State of The Mind Address

Monday again… and I, for one, am so glad to see it.  It’s blog day and I’ve got a lot to say today.  I’ve been down – well, as down as my optimistic nature allows – with all the medical issues surrounding me the last few weeks. My very, very dear friend and sometimes ‘sister’ has been diagnosed with stage IV bowel cancer, diabetes, hypertension, depression, and anxiety. One of my children is being successfully treated for depression and anxiety, but has developed a pre-diabetic condition and elevated cholesterol.

So, what did I do?  What else?  I researched mental life’s effect on physical health. I found information I’d always taken for granted proven scientifically and some – like the different types of smiles – I hadn’t thought about.

In EurekAlert!’s July 30th article, I zeroed in on the following.

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.”

Of course there’s more to the article, which you can read at: http://www.eurekalert.org/pub_releases/2012-07/wt-pmh073112.php

It made sense to me.  Another one of my children had troublesomely high cholesterol when she was agonizing over a major life decision three years ago.  She took her medication, ate the right foods and made certain she exercised and it kept right on rising.  Fast forward to a few months after she made and acted upon her decision. She faced her fear (thank you, Landmark) and returned to her doctor for a complete physical even though she had stopped taking the medication and ignored her diet. As a dancer (she IS my daughter), exercise wasn’t a problem. I’m so glad she did go back to the doctor.  There is no sign of elevated cholesterol.  Why?  I’m laying it on the fact that she’s happier now.

I tend to smile quite a bit and look for reasons to smile even when life seems hard.  I wondered if that were helping me with my own health and, if so, would it help others. Then I located this Aug. 1, Medical News Today article:

Smiling Reduces Stress And Helps The Heart

“A new study suggests that holding a smile on one’s face during periods of stress may help the heart. The study, due to be published in a forthcoming issue of Psychological Science, lends support to the old adage ‘grin and bear it,’ suggesting it may also make us feel better.”

The article goes on to distinguish between the different kinds of smiling.  You can find it at:

http://www.medicalnewstoday.com/articles/248433.php.

I found something unexpected to be happy about this week: Medical ID Fashions.  If you remember (and even if you don’t), I’d taken them off my blog roll because I ordered one of their medical alert bracelets and when it was delivered, there was a note in the box saying it could not be submerged in water.

I have osteoarthritis and could not (oh, all right, so I just didn’t want to) spend precious minutes a day struggling to get it off and on before I hit the shower. I just wanted something pretty that I could put on and ignore. I emailed the company about not warning the consumer that it wasn’t waterproof BEFORE the bracelet was purchased and received.

I heard nothing for months on end. Then the bracelet started to tarnish and I cleaned it.  Mistake!  Seems it could not tolerate the cleaning supplies I was using because there was some kind of protective coating over the brass and copper parts of it – a coating I knew nothing about since there was no information about cleaning on the website nor was any sent with the bracelet.

Again I sent an email.  This time I got a reply in less than 24 hours with a request to call them.  When I did and explained the problem, they offered to replace the bracelet with a waterproof stainless steel one for the difference in the price of the two bracelets.  I also noticed the websites now mentions which bracelets are waterproof although nothing is included about NOT being waterproof in the other bracelets’ descriptions.  There’s also still a lack of information about how to clean the bracelets.

I have already return mailed my old, ruined bracelet (who knew trying to be neat and clean could cause such problems?) and PayPal-ed the $20.  Now I wait. So I won’t have the pretty silver-copper-brass bracelet I wanted. I’ll have a waterproof, cleanable stainless steel one instead.  It may not be stylish but it could be a life saver.

I’m starting to see sales in England!  That’s something else to make me smile.  And thanks to AKDHC’s flier campaign, I’m starting to receive telephone calls from people who want the book but don’t have or know how to use a computer. I have a bunch of books I keep in the office for those without computers.  They can also be personally inscribed, if you’d like.  Just send me an email at: myckdexperience@gmail.com.

Time to get to researching cataract surgery and ckd.  Mine are scheduled for August 14th and September 4th.

Oh, got an email from a reader whose tests showed she had NO ckd, although she’d been diagnosed at stage 3.  Being a smart one, she retook the tests.  The first set of tests had false results.  No one knows quite how that happened, but if you should find you suddenly have test results, good or bad, that are totally unexpected, please have them redone.  We all want NOT to have CKD, but need to pay attention to it if we do.

Until next week,

Keep living your life!

Getting Back To Basics

This is what early stage CKD looks like

What an exciting week last week was.  The TweetChat was one of the most enjoyable learning experiences I’ve had to date… and I’m still learning about that.  The book signing at Bookmans (without the apostrophe) introduced me to several other health related authors I definitely resonated with as well as a maybe cousin who introduced me to the world of YouTube, so expect to see me there as soon as I can fit it into my schedule. In addition to that, I found so many articles that are apt for us that I had a really, really hard time choosing one. Here’s the winner of that contest:

Living a full life after a chronic kidney disease diagnosis

Learning that you have any disease can be a disheartening experience. However, when you are diagnosed with an early stage of chronic kidney disease (CKD) there are many things that you can do to slow its progression, and live a full life. By being conscientious about your health care and lifestyle choices, you can positively affect your quality of life when you have chronic kidney disease.

Tips for living a full life with chronic kidney disease

Here are a few basic tips that may help you slow the progression of chronic kidney disease and live a happier life:

  • Knowledge is power – Learn all you can about kidney disease and its treatments.
  • Honesty is key – Communicate openly with your health care team and ask the same from them.
  • Make lifestyle changes – Be attentive in learning your kidney care plan, take your prescribed medicine, follow the kidney diet and make other recommended changes.
  • Think positive – Fill your life with people and things that make you happy. Staying positive is one of the best choices you can make when you have chronic kidney disease.

Knowledge helps you live a full and happy life

When it comes to chronic kidney disease, there is much to learn, from what type of medicine you need to how you make your diet more kidney-friendly. If you continue to learn all you can about chronic kidney disease, you may feel better equipped to deal with it head on. Ask your health care team any questions you may have. You can also go online to see if there are local support groups that meet in discussion forums or in person.

Communicate honestly with your health care team

Your health care team is there to help you manage your chronic kidney disease. It is best to communicate honestly with them so they can best treat the disease.

The kidney diet, medication and other lifestyle tips

Getting answers and guidance to know what to do when you find out you have chronic kidney disease helps you feel more in control of your health. This includes changing your eating habits to include more kidney-friendly foods. To keep your kidneys functioning for as long as possible, it is essential to learn about protein, sodium, phosphorus and potassium, along with knowing how these nutrients make a difference in your health.

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

Studies confirm that keeping your blood pressure in check can help slow the progression of kidney disease, especially if you have diabetes and/or proteinuria (protein in the urine). According to the National Kidney Foundation (NKF) guidelines, you should keep your blood pressure at or below 130/85 if you have kidney disease, and at or below 125/75 if you also have diabetes and/or proteinuria.

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

If you have diabetes, tighter management of your blood glucose level can help slow the progression of kidney disease. It is important to keep your hemoglobin A1c at less than 6.5% or at the level established with your doctor, and closely monitor your blood glucose to avoid hypoglycemia. Ask your doctor or diabetes educator about your diabetes treatment goals and options.

Think positive after your diagnosis

After being diagnosed with an early stage of chronic kidney disease, you are in a good position to take control of your health. Having a positive attitude and surrounding yourself with a support system is necessary to help you live your life to its fullest. As you have learned, there are many ways to slow the progression of kidney disease. Keeping your kidney diet in mind, taking your medicines, controlling any other health issues you may have and changing some lifestyle habits can help. You will have a team of kidney health care professionals on your side to help you every step of the way.

You can find the article at http://www.yourkidneys.com/kidney-education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189 which is part of Yourkidneys.com from DaVita.

“Fill your life with people and things that make you happy.”  This sentence popped out at me.  A few months ago I decided to only be with people who wanted to be with me.  I was tired of constantly calling and running after people I loved who didn’t seem to have the time for me.  It was, and sometimes still is, a bit painful, but I also enjoy my time with friends and family – even professional relationships – so much more.  There are fewer people in my life, but these are the people who live on a two way street: one way to them; one way to me.  I almost wish I’d figured this out a long time ago, but then I would have missed out on the fun I had with the others (the ones who no longer want to be with me), the love that existed then and all the lessons we learned together.  I guess it’s true that people are in your life as you need them and they need you.  I’ll count myself very lucky for having known those people and think kindly of them as I hope they do of me.

Look at the time!  I’ve got to go now.  A long time buddy is in from New Jersey and I get to see her!!!

Until next week,

Keep living your life!

Glad To Know I’m Not The Only Optimist Out There

Sometimes people stop me when we’re talking just to tell me they are impressed with my optimism in the face of my disease… and I’m dumbfounded.  Doesn’t everyone with CKD keep living their lives, I’ve wondered again and again when I hear this comment.  Then I remember a nephrologist who accused me of being so involved with my disease that he thought I would just give up and become a professional patient.  He is obviously one of those doctors who just doesn’t take the time to know his patients. But, more importantly, he’s one that doesn’t understand how important it is to make sure optimism is part of the treatment plan.

In searching CKD blogs, news reports and anything else I can find that relates to CKD each week, I stumbled upon this one and thrilled at its message.  I am NOT the only optimist out there!  While I don’t necessarily agree with all this author epouses, there’s enough here that makes me think the message is well worth the read.

At the top of their blog page they run the message: “Live Now is a movement to start living on your terms, with hope, optimism and strength.” Their philosophy seems to be: “Kidney disease doesn’t define your life – you do. It’s time to get up, get out and live for today.”  They’ll get no argument from me.

Lifestyle

Don’t Worry, Be Happy

By Contributing Writer and PD Patient Jim McFarlin

“Happy Days Are Here Again.”

“Keep Your Sunny Side Up.”

“Put on a Happy Face.”

“Don’t Worry, Be Happy.”

“California Girls.”

OK, maybe that last song title doesn’t quite fit. (Or maybe it does. Hey, different strokes for different folks!) But ever since a caveman rubbed two sticks together and invented the rhythm section, it seems every era has had at least one popular tune encouraging its listeners to look on the brighter side of life.

Know why? Because LIFE IS HARD, that’s why! It’s chaotic, tedious, unpredictable and frequently unfair. And it feels even tougher when you have to face it each and every day in the company of a severe and disheartening illness – like Chronic Kidney Disease (CKD) or End-Stage Renal Disease (ERSD).

Oh, cheer up!

No, seriously. Cheer up.

The concept of a Positive Mental Attitude (PMA) has been bouncing around our collective consciousness long before Napoleon Hill coined the expression in his book Think and Grow Rich in the 1930s. Modern research suggests the ol’ PMA can play a major role in protecting you from the physical damages that ransack your body as a byproduct of stress.

Think and “grow” healthier. What a concept!

Home therapies like Peritoneal Dialysis (PD) (the treatment I use) and Home Hemodialysis (HHD) should give patients multiple reasons to be happier with their lot in life. They avoid having to arrange transportation for trips back and forth to the dialysis center several times each week; don’t have to sit in sterile, austere clinics for hours waiting for their procedure to be completed, and escape the frustration of having their time wasted when their scheduled appointments are delayed.

Nonetheless, you do have a serious illness. CKD saps your energy, alters your lifestyle, and can dominate your thoughts. You certainly can be forgiven for not wanting to giggle like the Pillsbury Dough Boy every day. I tend to think of myself as a generally optimistic and upbeat person, yet the diagnosis and constant care of my ESRD led to several dark days and melancholy thoughts. There are a few strategies I have developed from personal experience that might be helpful to you in maintaining the outlook of a shiny happy person.

Get in touch with a Higher Power. No, not your governor. If you, like the band R.E.M., are losing your religion, this won’t help you. But if you are, or ever have been a person of faith, there may be no better time to ratchet up your belief system. Reconnect or deepen your involvement with your church, mosque, temple or synagogue. You’ll be stunned at how supportive a caring body of believers can be. You might even find a kidney donor!

Get up, stand up. Without trying to sound like Dr. Wayne Dyer, every morning when your eyes blink open you have a choice: you can choose to get out of bed happy and ready to attack the day, or you can crawl out ill-tempered and bemoaning your cruel fate. Choose the former. The mind can be a terrible thing to waste; don’t let it lay you to waste.

Stay engaged in life. I always have been something of a clothes horse. These days, even though I have fewer occasions to leave home, whenever I do go out – even for an appointment with my nephrologist – I try to clean myself up and dress like I’m going to a party. I also schedule regular visits to my barber, Bill, because if “your hair ain’t tight, it ain’t right.” In other words, I try to maintain the same lifestyle I enjoyed before kidney disease became my permanent companion. If you look good, you tend to feel good. Don’t change your routine. The activities and hobbies that gave you enjoyment before your illness probably still will. If you have to force yourself to stay active, do so – it’s worth the effort.

Don’t block your blessings. Don’t be afraid to ask for help when you need it, and don’t be resistant to accept assistance when it’s offered. Family, friends, even total strangers –are remarkably willing to serve as the support system for someone in need. And who are you to deny somebody the opportunity to feel good about themselves for performing a mitzvah?

Seek out comrades in kidneys. In 2011, I attended my first convention of the American Association of Kidney Patients (AAKP), and I often visit dialysis clinics just to talk to patients (with the permission of the clinic supervisors and patients, of course). These events give me direct contact with others who completely understand and relate to everything I’m going through.

Remember that old quote, “I cried because I had no shoes, until I met a man who had no feet?” Callous as it may seem, placing yourself in the company of other people with CKD can have the side effect of making you feel better about yourself. No matter how sick or woebegone you think you are, I guarantee you will find somebody who’s got it worse. At the AAKP gathering I met kidney patients who had been on dialysis for 20, 30 years or longer or have had multiple failed organ transplants and still are leading positive, productive lives. Makes you think.

Write it down. When one of my magazine editors asked me to write a first-person account of my ESRD diagnosis and treatment, I resisted the idea harder than Lady Gaga opposes good taste. Turned out to be the best move I could have made. That article, and the positive feedback I received from it, inspired me to launch my first blog, “JK – Just Kidneying,” to chronicle my journey with kidney disease. It can be a cathartic experience to
describe in writing how CKD has affected you. If you’re uncomfortable blogging about it for public consumption, keep a journal for your eyes only. You might consider this exercise: Every so often, make a list of things for which you are thankful. If I wrote such a list today, my top five would be:

  1. A loving God who guides and protects me
  2. The most amazing and supportive wife any man could hope for
  3. Hundreds of relatives, friends and colleagues around the world who pray every day for my continued health and a kidney donor
  4. A roof over my head, heat and air conditioning, and a kitchen stocked with healthy food.
  5. You, for reading this.

Cherish Life. Cherish this life you have, kidney failure and all. Remember to laugh at yourself. Live life as if tomorrow will be your last day on earth; one day, you’ll be right.

And don’t worry…be happy.

You can find the article at: http://livenow.info/GetLiving/Lifestyle/DontWorryBeHappy.aspx

I have to say I’m smiling now and not just because of the article. There’s a tweet chat session about CKD coming up and another radio interview.  Maybe, just maybe, I will be able to accomplish my goal of getting the book into the hands of every newly diagnosed CKD patient before they leave their nephrologist’s office on their first visit.

Until next week,

Keep living your life!

A Bunch of Reasons to Weight Train

One of my bailiwicks is finding reasons to exercise. I love to dance, but not the half hour drive there and then the one back from the swing dance clubs  – so I don’t go as often as I’d like to.  Walking tapes are fun; I start smiling ten minutes in, but they can become redundant.  I rely on the indoor exercise bike quite a lot in the extreme heat out here.  I still race around the big box stores, too, and bowl whenever the opportunity presents itself. Every once in a while, I’ll go to an aerobics class at the local community center or the college.

But, it seemed to me that most of my exercising dealt with the lower half of my body.  What about the rest of me, I wondered.  That’s when I started surfing the internet and came up with the following article.  Hmmm, I have weights right here in the house….

 

Strength training does more than bulk up muscles

It may reduce depression, give older people better cognitive function, boost good cholesterol and more.

he-strength-training14Strength training often takes a back seat to cardiovascular training, but it can benefit the heart in ways that its more popular cousin can’t. (David Phillip /
 
By Jeannine Stein, Los Angeles TimesFebruary 13, 2011
Strength training has strong-armed its way beyond the realm of bodybuilding.A growing body of research shows that working out with weights has health benefits beyond simply bulking up one’s muscles and strengthening bones. Studies are finding that more lean muscle mass may allow kidney dialysis patients to live longer, give older people better cognitive function, reduce depression, boost good cholesterol, lessen the swelling and discomfort of lymphedema after breast cancer and help lower the risk of diabetes.

“Muscle is our largest metabolically active organ, and that’s the backdrop that people usually forget,” said Kent Adams, director of the exercise physiology lab at Cal State Monterey Bay. Strengthening the muscles “has a ripple effect throughout the body on things like metabolic syndrome and obesity.”

Historically, strength training was limited to athletes, but in the last 20 years, its popularity has spread to the general public, said Jeffrey Potteiger, an exercise physiologist at Grand Valley State University in Grand Rapids, Mich., and a fellow of the American College of Sports Medicine. “One can argue that if you don’t do some resistance training through your lifespan, you’re missing out on some benefits, especially as you get older or battle weight gain,” he said.

When we hit middle age, muscle mass gradually diminishes by up to about 1% a year in a process called sarcopenia. Women also are in danger of losing bone mass as they age, especially after the onset of menopause. Some studies have shown that moderate to intense strength training not only builds skeletal muscle but increases bone density as well.

Strength training often takes a back seat to cardiovascular training, but it can benefit the heart in ways that its more popular cousin can’t.

During cardio exercise, the heart loads up with blood and pumps it out to the rest of the body: As a result, Potteiger said, “the heart gets better and more efficient at pumping.”

But during resistance training, muscles generate more force than they do during endurance exercises, and the heart is no exception, Potteiger said. During a strength workout, the heart’s muscle tissue contracts forcefully to push the blood out. Like all muscles, stress causes small tears in the muscle fibers. When the body repairs those tears, muscles grow. The result is a stronger heart, not just one that’s more efficient at pumping.

Another big advantage of working out with weights is improving glucose metabolism, which can reduce the risk of diabetes. Strength training boosts the number of proteins that take glucose out of the blood and transport it into the skeletal muscle, giving the muscles more energy and lowering overall blood-glucose levels.

“If you have uncontrolled glucose levels,” Potteiger said, “that can lead to kidney damage, damage to the circulatory system and loss of eyesight.”

The benefits don’t end there. A 2010 study in the Clinical Journal of the American Society of Nephrology suggested that people on dialysis can benefit from building muscle. Researchers found that kidney dialysis patients who had the most lean muscle mass — a measurement derived from the circumference of the mid-arm muscle — were 37% less likely to die than the patients who had the least.

“This is something that has an impact on survival,” said Dr. Kamyar Kalantar-Zadeh, a principal researcher at the Los Angeles Biomedical Research Institute and coauthor of the study. “It’s not just about having more muscle and looking better — we’re talking about life and death.”

Even people who already have chronic kidney disease could benefit from strength workouts. Germany began to incorporate modified exercise equipment into dialysis treatment centers in 1995, and a 2004 study in the American Journal of Kidney Diseases examining that policy found that exercise may improve the efficiency of dialysis by increasing blood flow through the muscle and improving phosphate removal.

The brain may get a boost from the body’s extra muscle as well. A 2010 study in Archives of Internal Medicine found that women ages 65 to 75 who did resistance training sessions once or twice a week over the course of a year improved their cognitive performance, while those who focused on balance and tone training declined slightly. One reason for the improvement, researchers believe, may be that strength training triggers the production of a protein beneficial for brain growth.

This study was triggered by another that looked at resistance training as a way to reduce the risk of falls in older people, said coauthor Teresa Liu-Ambrose, a researcher at the University of British Columbia’s Centre for Hip Health and Mobility in Vancouver. As the study progressed, she said she noticed that participants “were able to take on new tasks, like taking the bus by themselves. They were able to prepare and plan for things and execute them.”

Strength training could be easier for people with mobility problems who might find it easier to navigate a stationary weight than a moving treadmill.

“It’s never too late to start,” Adams said. “The benefits are great.”

This is me again: Did you notice the mention of glucose levels?  While my own doctor has never mentioned them to me, other nephrologists and hospital renal department chiefs have.  They’re important.  Start paying attention to them.You can read the article for yourself at: http://www.latimes.com/health/la-he-adv-strength-training-20110213,0,6613489.story

Come join me Friday for a book talk at Chez Nous (11:30-12:30) if you’re not working.  The address is 14495 W. R. H. Johnson Blvd. Sun City West 85375. We can get to know each other by going out to lunch afterward if you’d like.

I think I mentioned that four different organizations are reviewing the book at the same time.  More on that when I get the reviews.

Until next week,

Keep living your life!

Published in: on October 10, 2011 at 10:34 am  Comments (4)  

Another Reason To Be Happy

I’m happy to announce the website for the book should be up by July 1: www.myckdexperience.com

This morning I found another reason for those of us with Chronic Kidney Disease to be happy.  I know!  It sounds ridiculous.  Now that that’s out of the way, there’s seemingly always been the suspicion that physical illness and depression were connected.  However, which came first?  We have sort of a chicken and the egg situation here.  This article from March 11’s ScienceDaily may help you understand the connection.

I left the usual reference topics in the article so you could see for yourself how to track down articles of interest to CKD patients by following the links.  Usually, you just click on whichever topic interests you.  You can’t do that here since I’ve reproduced the article from another site.  But, you can use the following link to go back to the original article to click through on these links: http://www.sciencedaily.com/releases/2011/03/110310173202.htm


Depression May Increase the Risk of Kidney Failure


ScienceDaily (Mar. 11, 2011)
— Depression is associated with an increased risk of developing kidney failure in the future, according to a study appearing in an upcoming issue of the Clinical Journal of the American Society Nephrology(CJASN). Approximately 10% of the US population will suffer from depression at some point during their lifetime.


See Also:
Lead investigator, Dr. Willem Kop (Department of Medical Psychology and Neuropsychology at the University of Tilburg, the Netherlands) and colleagues studied 5,785 people from four counties across the United States for 10 years. The participants were 65 years and older and not yet on dialysis. They completed a questionnaire measuring depressive symptoms and a broad range of medical measurements, including estimated glomerular filtration rate (eGFR) and risk factors for kidney and heart
diseases. The investigators examined whether depression predicted the onset of kidney disease or other medical problems in which the kidneys play a critical role.

According to the results, depression coincided with the presence of chronic kidney disease (CKD) and was 20% more common in individuals with kidney disease than those without kidney disease. The study shows that depression predicted subsequent rapid decline in kidney function, new onset clinically severe kidney disease (or end-stage renal disease), and  hospitalizations that were complicated by acute kidney injury. When the investigators corrected for the long-term effects of other medical
measures, the predictive value of depression for hospitalizations with acute kidney injury remained high.

Take home message: “People with elevated depressive symptoms have a higher risk of subsequent adverse kidney disease outcomes. This is partially explained by other medical factors related to depression and kidney disease. But, the association with depression was stronger in patients who were otherwise healthy compared to those who had co-existing medical disorders such as diabetes or heart disease,” explains Kop.

The investigators are currently analyzing which factors may explain the association with depression, which could include delayed seeking of medical care and miscommunications between patient and physicians and important biological processes associated with depression, such as the immune and nervous systems.

Study co-authors include Stephen Seliger (University of Maryland, Nephrology); Jeffrey Fink (University of Maryland Medical System, Department of Medicine, Division of Nephrology); Ronit Katz (University of Washington, Biostatistics); Michelle Odden (University of California,  Berkeley, Department of Epidemiology); Linda Fried (Veterans Affairs Pittsburgh Health System); Dena Rifkin (UCSD and VASDHS, Medicine); Mark Sarnak (Tufts-New England Medical Center, Medicine); and John Gottdiener (University of Maryland, School of Medicine, Medicine).

Story Source:

The above story is reprinted (with editorial adaptations by ScienceDaily staff) from materials provided by American Society of Nephrology, via EurekAlert!, a service of AAAS.


Journal Reference:

  1. Willem J. Kop, Stephen L. Seliger, Jeffrey C. Fink, Ronit Katz,
    Michelle C. Odden, Linda F. Fried, Dena E. Rifkin, Mark J. Sarnak, John
    S. Gottdiener. Longitudinal Association of Depressive Symptoms with Rapid Kidney Function Decline and Adverse Clinical Renal Disease Outcomes. Clinical Journal of the American Society Nephrology, 2011; DOI: 10.2215/CJN.03840510

Since I am almost 65 years and not yet on dialysis, I’ll use this as the excuse I’ve been looking for to remain a Pollyanna and laugh at my woes.  How bad can they be?  I’m not dead and that’s worth a bunch of laughter.  I always use laughter.  It’s sustained me in the very worse of times with dear one’s illnesses and now my own.  As they used to say in some commercial: try it, you’ll like it.

 
Excuse me, my neighbor installing the new dog door just told me he found black mold in the old one.  I’ve got to go laugh.
 
Until Tuesday,
Keep living your life!
 
 

 
 
 
 
Published in: on June 21, 2011 at 12:00 pm  Leave a Comment  

Caution: Lonely Can Be Harmful To Your Health

I had intended to do a blog tour – a romp through the different CKD blogs on the web – today but found myself stopped cold by this intriquing article from the online version of “The Economist.”  I can remember that when I was a child, if I seemed overly quiet or sad, my mother would say to me, “Go play with your brother. You’ll feel better.”  She was right, but I (and I’ll bet my mother, too) had no idea that we were actually encouraging my physical health each time I did that.

Now, as an adult, I’ve been told that CKD may lead to inflammation.  I’ve got to admit that I’ve never been happier that I enjoy both being with people and by myself and, most important of all, can count on my two hands the number of times I’ve felt lonely.  Who knew that was contributing to fighting my own CKD?

Healthy living

Mind and body

The reason loneliness could be bad for your health

Feb 24th 2011              | WASHINGTON, DC                    | from the print edition

SCIENCE has many uses, but it doesn’t often produce handy pick-up lines. Recent work on the genetics of disease, however, suggest a way of opening a conversation with that solitary attractive stranger in a bar: loneliness can make you ill.

Lonely people, it seems, are at greater risk than the gregarious of developing illnesses associated with chronic inflammation, such as heart disease and certain cancers. According to a paper published last year in the Public Library of Science, Medicine, the effect on mortality of loneliness is comparable with that of smoking and drinking. It examined, and combined the results of, 148 previous studies that followed some 300,000 individuals for an average period of 7.5 years each, and controlled for factors such as age and pre-existing illness. It concluded that, over such a period, a gregarious person has a 50% better chance of surviving than a lonely one.

Steven Cole of the University of California, Los Angeles, thinks he may know why this is so. He told the AAAS meeting in Washington, DC, about his work studying the expression of genes in lonely people. Dr Cole harvested samples of white blood cells from both lonely and gregarious people. He then analysed the activity of their genes, as measured by the production of a substance called messenger RNA. This molecule carries instructions from the genes telling a cell which proteins to make. The level of messenger RNA from most genes was the same in both types of people. There were several dozen genes, however, that were less active in the lonely, and several dozen others that were more active. Moreover, both the less active and the more  active gene types came from a small number of functional groups.

Broadly speaking, the genes less active in the lonely were those involved in staving off viral infections. Those that were more active were involved in protecting against bacteria. Dr Cole suspects this could help explain not only why the lonely are iller, but how, in evolutionary terms, this odd state of affairs has come about. For inflammation is an antibacterial response.

The crucial bit of the puzzle is that viruses have to be caught from another infected individual and they are usually species-specific. Bacteria, in contrast, often just lurk in the environment (like tetanus), and may thrive on many hosts (as does bubonic plague, for example). The gregarious are therefore at greater risk than the lonely of catching viruses, and Dr Cole thus suggests that past evolution has created a mechanism (the details of which remain unclear) which causes white cells to respond appropriately. Conversely, the lonely are better off ramping up their protection against bacterial infection, which is a bigger relative risk to them.

What Dr Cole seems to have revealed, then, is a mechanism by which the environment (in this case the social environment) reaches inside a person’s body and tweaks its genome so that it responds appropriately. It is not that the lonely and the gregarious are genetically different from each other. Rather, their genes are regulated differently, according to how sociable an individual is. Dr Cole thinks this regulation is part of a wider mechanism that tunes individuals to the circumstances they find themselves in. Where it goes wrong is when loneliness becomes chronic, and the inflammatory response becomes chronic at the same time.

Before civilisation intervened, such chronic loneliness would have been so rare (because isolated individuals are so vulnerable to predation) that evolution would have ignored it. Now, paradoxically, the large population that civilisation makes possible means loneliness is commonplace—and with it consequences that natural selection, which is blind to the future, has not yet had time to deal with.

from the print edition | Science and Technology

The link for the article is: http://www.economist.com/node/18226813?story_id=18226813&fsrc=nlw|hig|02-24-2011|editors_highlights

I don’t know about you, but this got me to wondering if everything in the entire universe has an effect on your health.  I’ve often suspected that’s true and am more so now that articles supporting this theory seem to fall into my lap.  I do search the web for interesting CKD related material, but not specifically this sort. Yet, that’s what I find.  Hmmmm, wonder if there’s a specific purpose in what I find and when I find it, a purpose that’s not my own.

Until Tuesday, you might want to ponder these thoughts or not but, either way, be sure you

keep living your life.

Published in: on June 7, 2011 at 9:23 am  Leave a Comment  

Other Aspects of CKD Treatment

Friday’s blog went by the wayside!  While I was well aware it was new year’s eve, in my mind that made it a weekend.  I blog on Tuesdays and Fridays, so why would I blog on a weekend? Of course, it slipped my mind that I hadn’t blogged yet late that week.  Honestly, folks, this lapse in logical thinking has absolutely nothing to do with CKD.  It’s just the way my sometimes illogical brain functions.  We had a wonderful new year’s eve with friends in from Florida and their mom/mother-in-law: quiet, just the five of us but good eats and good company.  I hope yours was as much fun whatever you did and that the new year brings you health and lots and lots of fun.

This is the image that appears on the cover of the book, “What Is It and How Did I Get It?” upon which this blog is based.  I actually took real kidney beans and arranged them in the shape of a kidney.  What I didn’t know is how hard it is to find either dried kidney    beans or a can of solely kidney beans where I live, so I bought a can of mixed beans and picked out the kidney beans one by one.  Not the most pleasant experience, but I like the results.  The book should be available this spring.

Now, we were discussing otheraspects of CKD treatment. There is a psychological trick to remembering to take your prescribed medication [for CKD or other ailments] in the proper quantity and on time.  When it’s prescribed, ask exactly what it is for and what it is supposed to do.  The simple act of  remembering this discussion, picturing your doctor possibly pointing at a diagram, picturing yourself possibly watching your doctor’s face, and hearing the words said at the time will keep the medication –  and the proper time to take it –  in the forefront of your mind.

All CKD patients want that cure, that miracle that is going to rid us of CKD.  As of now, it doesn’t exist, so be leery of any product that promises to do just that.  Remember the old adage: if it sounds too good to be true, it is.  I noticed overuse of the following words in the advertisements for such products: secret, breakthrough, quick, guaranteed.  My initial reaction is, “Yeah, right,” before I navigate away from the site or turn the page in that particular magazine.

On the other hand, complementary and alternative medicine may be helpful.  Holistic medicine includes the physical, mental, emotional and spiritual.  It seems to me that your nephrologist also deals with the physical, but who is tending to the mental, emotional and spiritual aspects of your health?

Some people may prefer to have a therapist or psychologist tend to their emotional state. Help in any of these areas can only be welcome. Although they are not the kind of treatments taught in medical school, some hospitals and insurance companies do cover these alternative or complementary medicine practices.  Check with yours to see if the mental, emotional or spiritual help you want is covered.

Then there’s preventative medicine, which is what your nephrologist will probably encourage you to practice anyway.  This is the kind of medicine in which you, the patient, are educated to prevent more health problems [renal diet, exercise, etc.] rather than just treating symptoms you already have.  It also gives you the information you need to stick to your guns when a physician who doesn’t know you is trying to prescribe something you know will do further damage to your kidneys.

You’d be surprised at what was once considered alternative medicine.  Once practices have been proven both effective and safe, they become part of mainstream medicine.  These include osteopathy [an overly simplistic explanation would be the joining of medical practices and chiropractics], chiropractics, acupuncture, acupressure [more commonly referred to as acupuncture without the needles], diet, hypnosis, music, art, visualization, relaxation, massage, vitamins, and meditation.  http://www.nccam.nih.gov. is the nih part of the address. That means the National Institute of Health, and it’s a government site.  This may help you decide which of these disciplines interest you.  As usual, check with your nephrologist before you act on your decision.  You don’t want to start something that might either be harmful or undermine your treatment in a way you may not have thought about.

There’s also help of another sort – psychological.  This doesn’t necessarily mean heavy duty therapy.  I’ve found online chat rooms and message boards by entering CKD in a search.  I’ve already mentioned that I’m not the joining kind, but that doesn’t mean that I don’t get some comfort from lurking on these sites.  I’ve found answers to questions I didn’t know I had until I read them.  I also was able to identify feelings I had been vaguely aware of when I found them being discussed on message boards.  Sometimes, lurkers – people who observe rather than participate – are invited to join the conversation. Other times, you’re left alone until you feel you can join in or leave the site.

There are also live support groups for those who want the eye contact, the hugs, the chance to read body language.  Your nephrologist or your local hospital can help you find such a group or you can find their locations by surfing the web.  Support groups may also lead you to come to terms with the fact that, for the rest of your life, you need to declare your CKD for most life and insurance policies. A note on Twitter:  I see that they are beginning to include support groups, but as of the printing of this blog, I haven’t seen any for CKD.

Until Friday (no, really, I mean it),

Keep loving your life.

More Encouraging Ideas

Here’s hoping everyone enjoyed whichever holiday you celebrated: Chanukah, Christmas, or-  just recently – Kwaanza.  One thing they all have in common is food, lots and lots of food.  Usually by now, CKD patients are bemoaning the fact that they went WAY off the renal diet during these celebrations.  Stop, please.  Except for starfruit, whose toxins are deadly for CKD patients, all the other foods that are not included in the renal diet are actually to be avoided or eaten only once in a great while.  So, if you’re an early stage CKD patient, chances are you haven’t done damage to your kidneys with this once a year indulgence.

Here are some more encouraging ideas:

There is a psychological trick to remembering to take your prescribed medication [for CKD or other ailments] in the proper quantity and on time.  When it’s prescribed, ask exactly what it is for and what it is supposed to do.  The simple act of  remembering this discussion, picturing your doctor possibly pointing at a diagram, picturing yourself possibly watching your doctor’s face, and hearing the words said at the time will keep the medication –  and the proper time to take it –  in the forefront of your mind.

All CKD patients want that cure, that miracle that is going to rid us of CKD.  As of now, it doesn’t exist, so be leery of any product that promises to do just that.  Remember the old adage: if it sounds too good to be true, it is.  I noticed overuse of the following words in the advertisements for such products: secret, breakthrough, quick, guaranteed.  My initial reaction is, “Yeah, right,” before I navigate away from the site or turn the page in that particular magazine.

On the other hand, complementary and alternative medicine may be helpful.  Holistic medicine includes the physical, mental, emotional and spiritual.  It seems to me that your nephrologist also deals with the physical, but who is tending to the mental, emotional and spiritual aspects of your health?

Some people may prefer to have a therapist or psychologist tend to their emotional state. Help in any of these areas can only be welcome. Although they are not the kind of treatments taught in medical school, some hospitals and insurance companies do cover these alternative or complementary medicine practices.  Check with yours to see if the mental, emotional or spiritual help you want is covered.

Then there’s preventative medicine, which is what your nephrologist will probably encourage you to practice anyway.  This is the kind of medicine in which you, the patient, are educated to prevent more health problems [renal diet, exercise, etc.] rather than just treating symptoms you already have.  It also gives you the information you need to stick to your guns when a physician who doesn’t know you is trying to prescribe something you know will do further damage to your kidneys.

You’d be surprised at what was once considered alternative medicine.  Once practices have been proven both effective and safe, they become part of mainstream medicine.  These include osteopathy [an overly simplistic explanation would be the joining of medical practices and chiropractics], chiropractics, acupuncture, acupressure [more commonly referred to as acupuncture without the needles], diet, hypnosis, music, art, visualization, relaxation, massage, vitamins, and meditation.  http://www.nccam.nih.gov. is a helpful site which includes nih as part of the address. That means the National Institute of Health, and it’s a government site.  This may help you decide which of these disciplines interest you.  As usual, check with your nephrologist before you act on your decision.  You don’t want to start something that might either be harmful or undermine your treatment in a way you may not have thought about.

There’s also help of another sort – psychological.  This doesn’t necessarily mean heavy duty therapy.  I’ve found online chat rooms and message boards by entering CKD in a search.  I’ve already mentioned that I’m not the joining kind, but that doesn’t mean that I don’t get some comfort from lurking on these sites.  I’ve found answers to questions I didn’t know I had until I read them.  I also was able to identify feelings I had been vaguely aware of when I found them being discussed on message boards.  Sometimes, lurkers – people who observe rather than participate – are invited to join the conversation. Other times, you’re left alone until you feel you can join in or leave the site.

There are also live support groups for those who want the eye contact, the hugs, the chance to read body language.  Your nephrologist or your local hospital can help you find such a group or you can find their locations by surfing the web.  Support groups may also lead you to come to terms with the fact that, for the rest of your life, you need to declare your CKD for most life and insurance policies. A note on Twitter:  I see that they are beginning to include support groups, but as of the printing of this book, I haven’t seen any for CKD.

Until Friday, new year’s eve,

Keep loving your life!

Published in: on December 28, 2010 at 12:47 pm  Leave a Comment  

I Become Even More Frightened

You know, there are organizations (see the blogroll on the right hand side of the page) which can offer us support. Being no fool (or so I thought at the time), I immediately contacted the American Association of Kidney Patients asking that they send me whatever they had.  And they did. And I started quaking in my boots again. 

Being the wonderfully informative – even if I wasn’t ready to accept or even understand the material – organization that they are, they sent me pamphlet after pamphlet: “Kidney Beginnings: A Patient’s Guide to Living with Reduced Kidney Function,”  “ When Your Loved One is Depressed,”  “Understanding Depression in Kidney Disease,” (two on depression?  Did that mean I was bound to become depressed because I had CKD?), “Understanding Anemia in Kidney Disease,” and “Understanding High Phosphorus and Your Treatment Options.” I haven’t even included the ones about dialysis or transplantation options.

I later learned that depression may be a part of the stress of becoming a CKD patient.  Overnight, you become a special person with special needs.  I asked so many questions of my nephrologist that he feared this was what was happening to me.  It wasn’t, but it seems it could have been. 

You have to think about everything: how much of each kind of food, which foods at all, over the counter medications, exercises, sometimes even integrating rest periods into your day.  There are the constantly changing vitamins and minerals; you need to stay in balance and that can change every time you read the results of your blood and urine tests.  Maybe you need more vitamin D this quarter or less calcium.  It’s so individual.  Sometimes, this depression can be caused by something as simple as not being about to admit you are overwhelmed and need help.  You need to relearn that you are more than this disease.  

The steps to accepting this diagnose reminded me of those dealing with death.  The first is shock.  Yes, that was me.  I was dumbfounded.  Then there’s grief.  I think I may have skipped this step by researching instead.  After that, there is usually denial, but again, I was so quick to research that I found myself not grieving, but dreading what I thought was going to be imminent dialysis. 

I remembered reading somewhere that denial does have a purpose as long as it is not never-ending. It helps you cope with this news until you can deal with it.  Just be sure you don’t use denial as a reason for non-compliance with your nephrologist’s and nutritionalist’s directions. It was the research that led me into acceptance.  This was my life and I would learn to adapt to it because I didn’t like the alternative.

It took me about year to pick up these pamphlets again after initially reading them. They do not go into that much depth, are obviously meant to be helpful, and are gentle introductions to the topics.  But I still wasn’t ready.  I put them away and ignored them until I decided to write this book.  Then I looked at them a third time – and still felt the dread that this was going to be my future. For all the information available to me about my disease and all these educational booklets, I couldn’t help thinking that depression and dialysis or transplantation were going to be my immediate future.

I was an optimist by nature; why all the pessimism? I believed in learning everything I could about anything that affected my life; why the rigid attempt to shut this out?  I had a mental image of a large hand being held up in the universal “STOP” mode in front of this information.  Maybe I needed a less official approach.  After all, the American Association of Kidney Patients calls itself “The Voice of All Kidney Patients,” and I had never been a joiner.

I’ll tell you the other avenues I tried next week.  Enjoy the weekend!

Published in: on October 15, 2010 at 1:35 pm  Comments (2)