This Former Hippy Wannabe Likes HIPAA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

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It’s the Heat AND the Humidity

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

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

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

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

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

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

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

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

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

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

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

The CDC offers the following advice to avoid heat illness:

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Good Grief!

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

Until next week,

Keep living your life!

*The links to Alan’s obituaries:

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

Two Masters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

The Other Side of the Coin

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

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

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

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

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

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

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

No, that won’t do. I think we need more of an explanation. This is from SlowItDownCKD 2015:

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“VA eKidney Clinic

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

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

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

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

 

 

 

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

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

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

Until next week,

Keep living your life!

Ratio: Is That Like Rationing?

urine containerA friend called me Friday night wondering what her creatinine/albumin ratio meant since that reading was high on her last blood draw. Actually, she wanted to know if this was something to worry about. After extracting a promise that she would call her doctor with her questions today when her physician’s office opened for business again, I gave her some explanations. Of course, then I wanted to give you the same explanations.

Although the Online Etymology Dictionary tells us both ratio and rationing are derived from the same Latin root – ratio – which means “reckoning, calculation; business affair, procedure,” also “reason, reasoning, judgment, understanding,” they aren’t exactly the same. My old favorite, The Merriam-Webster Dictionary defines ratio at dictionaryhttps://www.merriam-webster.com/dictionary/ratio in the following way: the relationship in quantity, amount, or size between two or more things, as in that of your creatinine and albumin.

As for rationing, if you’re old enough to remember World War II, you know what it means. If you’re not, the same dictionary can help us out again. At https://www.merriam-webster.com/dictionary/rationing, we’re told it’s “a share especially as determined by supply.” Nope, doesn’t work here since we’re not sharing our creatinine or albumin with anyone else. We each have our own supply in our own ratios, albeit sometimes too high or sometimes too low.

What are creatinine and albumin anyway? Let’s see what we can find about creatinine in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

“Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.”

Well, what about albumin? This can get a bit complicated. Remember, the UACR (Hang on, explanation of this coming soon.) deals with urine albumin. There’s an explanation in SlowItDownCKD  2016 about what it’s not: serum albumin.

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

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This is from SlowItDownCKD 2015 and explains what the UACR is and why your albumin-to-creatinine ratio (UAC R) is important:

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

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

Basically, that means if you have a high UACR once, get your urine retested a week or two later before you even think about worrying, which is what my friend’s doctor confirmed. But do make sure to get that second test so you can be certain your kidney function is not being compromised.

I was thrilled that both my paper and notes from the field about Chronic Kidney Disease Awareness were accepted for Landmark’s Journal for the  Conference for Global Transformation AND then be able to Journal for the Conference for Global Transformationpresent a poster about it during the conference this past weekend. In addition I was lucky enough to have lunch with one of the keynote speakers. Who, you ask? Amy D. Waterman, Ph.D.

This is one important person to us. She has changed the face of pre dialysis and transplant education globally by starting “an educational nonprofit corporation and has been awarded more than $20 million in grants…she has reached tens of thousands of people to date, educating them in the miracle of live organ donation. Last year, Dr. Waterman was invited to the White House to share about the possibility of ending the organ donor shortage.” This material is from the Journal of the 2017 Conference for Global Transformation, Volume 17, No. 1.

This is exactly what we need to do for early and moderate stage CKD. This is what the social media presence, the blogs, and the books are about. And you know what? That’s just.plain.not.enough. Last I heard, I have 107,000 readers in 106 countries. And you know what? That’s just.plain.not.enough. Am I greedy? Absolutely when it comes to sharing awareness of CKD. Do I know how to expand my coverage? Nope…not yet, that is. I am so very open to suggestions? Let me hear them!

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

Until next week,

Keep living your life!

 

B.U.N. No, not bun. B.U.N.

Let’s consider this part 2 of last week’s blog since all these terms and tests and functions are intertwined for Chronic Kidney Disease patients. Thanks to reader Paul (not my Bear, but another Paul) for emphatically agreeing with me about this.

Bing! Bing! Bing! I know where to start. This is from The National Kidney Disease Education Program at the U.S. Department of Health and Human Services’ information about being tested for CKD.

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

Blood:

BUN –

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.”

If you read last week’s blog about creatinine, you know there’s more to the testing than that and that more of the information is in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. No sense to repeat myself so soon.

Let’s take this very slowly. I don’t think it necessary to define blood, but urea? Maybe. I found this in SlowItDownCKD 2015:

“But how can I explain blood urea?  I’ll allow the experts to do that.

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

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

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD, the toxins remaining in your body are not eliminated as well….”

You with me so far? If there’s suspicion of CKD, your nephrologist tests your serum creatinine (see last week’s blog) and your BUN.  Wait a minute; I haven’t explained nitrogen yet. Oh, I see; it has to be defined in conjunction with urea.

Thanks to The National Kidney Foundation at https://www.kidney.org/atoz/content/understanding-your-lab-values for clearing this up:

“Urea nitrogen is a normal waste product in your blood that comes from the breakdown of protein from the foods you eat and from your body metabolism. It is normally removed from your blood by your kidneys, but when kidney function slows down, the BUN level rises. BUN can also rise if you eat more protein, and it can fall if you eat less protein.”

So now the reason for this protein restriction I wrote about in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease should be clear.

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

This is starting to sound like a rabbit warren – one piece leads to another, which verves off to lead to another, and so forth and so on. All right, let’s keep going anyway.

Guess what. Urea is also tested via the urine. Nothing like confusing the issue, at least to those of us who are lay people like me. Let’s see if Healthline at http://www.healthline.com/health/urea-nitrogen-urine#overview1 can straighten this out for us.

“Your body creates ammonia when it breaks down protein from foods. Ammonia contains nitrogen, which mixes with other elements in your body, including carbon, hydrogen, and oxygen to form urea. Urea is a waste product that is excreted by the kidneys when you urinate.

The urine urea nitrogen test determines how much urea is in the urine to assess the amount of protein breakdown. The test can help determine how well the kidneys are functioning, and if your intake of protein is too high or low. Additionally, it can help diagnose whether you have a problem with protein digestion or absorption from the gut.”

Hmmm, these two don’t sound that different to me other than what is being analyzed for the result – blood (although blood serum is used, rather than whole blood) or urine.

What about BUN to Creatinine tests? How do they fit in here? After all, this is part 2 of last week’s blog about creatinine. Thank you to Medicine Net at http://www.medicinenet.com/creatinine_blood_test/article.htm for explaining. “The BUN-to-creatinine ratio generally provides more precise information about kidney function and its possible underlying cause compared with creatinine level alone.”

Dizzy yet? I think that’s enough for one day.

In other news, the price of all my Chronic Kidney Disease books has been reduced by 20%. I think more people will avail themselves of this information if they cost less… and that’s my aim: CKD awareness. If you belong to Kindle’s share program, you can take advantage of the fact that the price there was reduced to $1.99. You can also loan my books to a Kindle friend or borrow them from one for free for 14 days. Or you can ask your local librarian to order all five books, another way of reading them free. I almost forgot: as a member of Kindle Unlimited and the Kindle Owners’ Lending Library, you also read the books for free although you do need to pay your usual monthly subscription fee.

Students: Please be aware that some unscrupulous sites have been offering to rent you my books for a term for much more than it would cost to buy them. I’ve succeeded in getting most of them to stop this practice, but more keep popping up.

Until next week,

Keep living your life!

Recreating Creatinine

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

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

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

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

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

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

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

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

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

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

Blood:

BUN – BUN stands for blood urea nitrogen.

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

Urine:

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

The Helper Asks for Help

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

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

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

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

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

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

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

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

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

Additionally, you must have one of the following:

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Women Marching to the Kidney’s Beat

In keeping with my theme of March being Women’s History Month – minus the history – and National Kidney Month, today’s blog will be about those women around the world who have contributed to Chronic Kidney Disease knowledge. Two such women, Dr. Vanessa Grubbs and Dr. Bessie Young, were highlighted in February’s tribute to Black History Month and women in nephrology. Thank you again, ladies, for all you do for CKD patients.

When you realize the study of nephrology as we know it is only a little over 50 years old (Incredible, isn’t it?), you’ll understand why I raided The International Society of Nephrologists (ISN) October 2010 issue at http://www.theisn.org/images/ISN_News_Archive/ISN_News_35_October_2010_LR.pdf for the following information. I’ve added notes for clarification when needed.

United States: An accomplished researcher and physician, Josephine Briggs is a former ISN councilor and former councilor and Secretary of ASN (American Society of Nephrologists). She is the former director of the Division of Kidney, Urologic, and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), US National Institutes of Health (NIH), and was responsible for all NIH funded renal research in the 1990s. Today, she is Director of the National Center for Complementary and Alternative Medicine. She maintains a lab at NIDDK, researching the renin-angiotensin system, diabetic nephropathy, circadian regulation of blood pressure, and the effect of antioxidants in kidney disease.

Europe: Rene Habib, who passed away (in 2010), was a truly pioneering renal pathologist. She provided the first description of many renal diseases and worked with ISN founder Jean Hamburger to establish nephrology as a new discipline in Europe. Her contributions and energy were central to establishing pathology as an essential and integrated component of this new field worldwide.

India: Vidya N. Acharya was the first woman nephrologist in India and trained some 150 internists in nephrology. For three decades, her research focused on Urinary Tract Infection. She was a consultant nephrologist at Gopalakrishna Piramal Memorial Hospital and director of the Piramal Institute for training in Dialysis Technology, Renal Nutrition and Preventive Nephrology in Mumbai. She received a Lifetime Achievement Award from the Indian Society of Nephrology in 2007.

China: HaiYan Wang is the Editor of Kidney International China and has been an ISN and ASPN (American Society of Pediatric Nephrology) councilor and Executive Committee member as well as a member of the editorial boards of Chinese and international renal journals. She has published over 200 articles and books in Chinese and English. She graduated from Beijing Medical University. After three years of internship, she became a nephrology fellow at the First Hospital Beijing Medical University. Since 1983, she moved on to Chief of Nephrology and later became Professor of the Department of Medicine at the First Hospital Beijing. She has been Chairman of the Chinese Society of Nephrology and is Vice President of the Chinese Medical Association. Her unit is the largest training site for nephrology fellows in China.

United Arab Emirates: Mona Alrukhaimi is co-chair of the ISN GO (International Society of Nephrologists Global Outreach Programs) Middle East Committee, and the leader of the KDIGO (Kidney Disease: Improving Global Outcomes) Implementation Task Force for the Middle East and African regions. She is also a Member of the Governing Board of the Arab Society of Nephrology and Renal Transplantation. Since 2006, she has actively organized World Kidney Day activities in the United Arab Emirates and prepared the past four rounds of the ISN Update Course in Nephrology. Having played an active role in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, she contributes to serve on the custodian group and takes part in the Steering Committee for Women in Transplantation under The Transplantation Society.

South Africa: Saraladevi Naicker carried the weight of setting standards and provided the first training program for nephrologists in Africa over the last decade (Remember this article was published in 2010.). Specializing in internal medicine, she trained in Durban and later helped set up a Transplant Unit in the Renal Unit at Addington Hospital. In 2001, she became Chief Specialist and Professor of Renal Medicine at University of Witwatersrand in Johannesburg and in 2009 was appointed Chairman of Medicine at Wits. She is proud that there are currently (Again: in 2010) six postgraduate students from Africa studying for higher degrees in nephrology under her tutelage. Over the years, Naicker’s unit has served as the main training site for young nephrologists from across Africa and many individuals trained by her are currently practicing in Africa. Naicker received the Phillip Tobias Distinguished Teaching Award in 2006, an honor which bears testimony to her teaching prowess.

Israel: Batya Kristal is Professor of Medicine at the Technion Medical School, Haifa. She is the first woman to direct an academic nephrology department in Israel. At the Western Galilee Hospital, Nahariya, she leads a translational research project focusing on different aspects of oxidative stress and inflammation. She also heads a large clinical nephrology and dialysis program, which uniquely integrates staff and patients from the diverse ethnic population of the Galilee. Founder of the Israeli NKF, initiator and organizer of the traditional annual international conferences at Nahariya, she is truly an important role model for women in the country.

Australia: After holding resident positions in medicine and surgery and as registrar in medicine at the Baragwanath Hospital in Johannesburg, Priscilla Kincaid-Smith was director and physician of Nephrology at Royal Melbourne Hospital and Professor of Medicine at University of Melbourne. She demonstrated overwhelming evidence of the link between headache powders and kidney damage and contributed to research on the links between high blood pressure and renal malfunction. The only female ISN President so far, she was named Commander of the Order of the British Empire “for services to medicine”, was awarded the David Hume Award from the National Kidney Foundation (USA) and became a Companion of the Order of Australia.

There’s very little room for me to add my own words this week so I’ll use them to add myself as a lay woman in nephrology (What hubris!) to let you know that the edited digital version of SlowItDownCKD 2016 will be out on Amazon later this week. You guessed it: in honor of National Kidney Month.

 

Until next week,

Keep living your life!

Women and Water (Men, too)

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

Hi There,

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

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

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

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

Staying Hydrated When You Have Chronic Kidney Disease

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

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

Recognizing The Signs

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

Steps to Take

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

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

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

 

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

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

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

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

The CDC also offers advice to avoid heat illness:

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

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

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

Until next week,

Keep living your life!

It’s Unfolding Now

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Not Your New Age Crystals

Sometimes, a reader will ask a question and I’ll research the answer for him/her, always explaining first that I’m not a doctor, don’t claim to be one, and (s)he will need to check whatever information I offer with his/her nephrologist before acting on it. There was just such a comment this week: “Just wondering if you have any advice on Gout and it’s effect on Kidney disease? Mary.” Advice? No. Research? Yes.

What is itLet’s establish just what gout is first. This is how it’s defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease :

“gout: particularly painful form of inflammatory arthritis characterized by a build-up of urate crystals in the joints, causing pain and inflammation.”

Urate crystals? MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=11853 defines these as: “… salt derived from uric acid. When the body cannot metabolize uric acid properly, urates can build up in body tissues or crystallize within the joints.”

Okay, what’s uric acid then? Thanks to the Merriam Webster Online Dictionary at http://www.merriam-webster.com/dictionary/uric%20acid for the definition:

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

Whoops, looks like I missed a definition here: tophi simply means the deposit itself.

You may be wondering what that has to do with Chronic Kidney Disease.  This paragraph from The IMG_2982Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 explains:

“Researching that brought me to an English article from Arthritis Research UK which cited an American study.  I’m going to reproduce only one paragraph of the article here because it brought home exactly what gout with Chronic Kidney Disease can do to your body.

‘The findings were presented at Kidney Week 2011 by researcher Dr Erdal Sarac. He concluded: ‘This study reveals a high prevalence of gout in patients with CKD. Male sex, advanced age, CAD, hypertension, and hyperlipidemia were significantly associated with gout among CKD patients.’”

You may need some more definitions to fully understand that paragraph, so I’m reproducing these from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

CAD: coronary artery disease

hyperlipidemia: high cholesterol

hypertension: high blood pressure

Gout sounds bad. I’ll bet you’re wondering how you can help avoid gout… especially if you have CKD. Let’s go back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for a moment.

“One disease, CKD, can be implicated for three others if you also have gout.  … I didn’t know that gout is also somehow in the mix of being medically compromised.  I have hyperlipidemia and hypertension and CKD.  True, I’m not an older male but should I become more vigilant about any hints of gout? ….

bottled waterI would have to be careful about my food and beverage intake. Oh, wait, I’m already doing that by following the renal diet. In both, you are urged to cut back on alcohol and drink more water instead. Purines are a problem, too, but then again I am limited to five ounces of protein {A purine food source} per day. Hmmm, avoiding sugar-sweetened drinks may help. Say, with CKD, I have to watch my A1C {How the body handles glucose or sugar in a three month period} so that I don’t end up with diabetes.  That means I’m watching all my sugar intake already. I see fructose rich fruits can be a problem.  But I’m already restricted to only three servings of fruit a day!  Oh, here’s the biggie: lose weight.  Yep, been hearing that from my nephrologist for four (Me here: it’s more like nine years now.) years.  To sum up, by attending to my CKD on a daily basis, I’m also attempting to avoid or lessen the effects of gout.

This is getting very interesting.  I also take medication for both hypertension and hyperlipidemia.  Are they also helping me to avoid gout?  It seems to me that by treating one condition {Or two in my case}, I’m also treating my CKD and possibly preventing another.  It is all inter-related.”

By the way, based upon another reader’s question I mentioned cherries and gout in The Book of FullSizeRender (3)Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“From my reading, I’ve also garnered the information that cherries can help with iron deficiencies, lower blood pressure, improve sleep, help with gout, and lower the risk of heart disease.

Or can they? Remember that too much potassium can actually cause an irregular heartbeat or possibly stop your heart.”

So now, we need to watch purines and potassium, too. Aha! Following the renal diet already is helping to avoid potassium. What about purines? According to WebMD at http://www.webmd.com/arthritis/tc/diet-and-gout-topic-overview:

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

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

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

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

Does this list sound familiar? It should if you’re following the renal diet. While not exactly the same, there’s quite a bit of overlap in the two diets.

Mary… and every other reader… I hope this was enough information for you to write a list of questions about CKD and gout to bring to your next nephrology appointment.

IMG_2980Until next week,

Keep living your life!

A Cautionary Tale

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

renal-onlinedoctor: hello, your age and gender?

You: 69 female

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

You: 50%

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

You: Just joint and muscle pain.

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

You: HBP, neuropathy, arthritis, psoriasis

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

You:  Only hbp meds and arthritis meds.

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Deep in the Heart of Texas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The CDC offers the following advice to avoid heat illness:

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

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

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

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

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

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

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

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

Keep living your life!

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!

But What Does That Mean?

11164740_10206320086664607_5860553690846776933_oI have to start off with gratitude to Team SlowItDownCKD for their willing participation in yesterday’s National Kidney Foundation of Arizona Kidney Walk. Abby Wegerski, Lara Garwood (and their ‘others’), Keith Harris, Patti DuBois, and Amy Vlasity with her children – Olivia, Willie, and Adam – all showed up bright and early.  I was so busy passing out book cards, speaking to others, and enjoying the dancing my team did that I neglected to notice which radio and TV stations were there.  Let me know if you can help out here.

Funny anecdote: when I presented Dr. Ivie of NKF of Az. with a copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, he looked at it quizzically and said something to the effect that it looked thicker than the other one I’d given him.  He was actually referring to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Thank you, Dr. Ivie, for proving to me that I got the cover just right for everyone to know this is a series.Book Cover

I’m glad to report there are loads of questions about last week’s blog.  These are questions I was going to answer when I got the results, hopefully for next week’s blog.  However, I’ll happily yield to public demand.

To refresh your memory, the test in question is NutrEval (FMV Amino Acids) with Nutrient & Toxic Elements. Below is a scan of the orders.  Lots of different elements being tested here.  I could think of several ways to explain them, but turned to the CPT codes as what seemed to be the easiest way of doing so.

Notice there are CPT codes to the right of the profile components.  CPT means ‘Current Procedural Terminology” according to The American Medical Association (AMA) at http://www.ama-assn.org/ama/pub/physician-resources/solutions-managing-your-practice/coding-billing-insurance/cpt.page

I attempted to use the AMA code manager at https://ocm.ama-assn.org/OCM/CPTRelativeValueSearch.do?submitbutton=accept  where you can enter any CPT code. No go, it turned out the site required registration and payment. I also wonder if this is not a billing site.

Back to figuring this out.  Next I did a simple Google search. I did come up with a few sites, but they all seemed to be for billing purposes. Well, maybe I shouldn’t be using those codes.  Maybe they were codes used solely for billing.

Oh! Mental head slap!  That’s exactly why CPT coding was developed and what it’s used for. (Do you think I can get away with saying I’m still tired from yesterday’s walk as my excuse for not catching that immediately?)

IMG_0070Think!  What else could I do? I could do a simple search for the name of the test, couldn’t I?  I decided to find out. I looked for the most esoteric name I could find and settled upon 8-OHdG.  Anyone ever hear of it?  Me, neither. But Farley’s Free Medical Dictionary has.  This is at http://medical-dictionary.thefreedictionary.com/8-OHdG 8-OHdG 8-hydroxy-2’-deoxyguanosine.

A modified DNA nucleoside product generated by reactive oxygen species (ROS), which is elevated in colorectal carcinoma, but not in adenomas. 8-OHdG is also elevated in ulcerative colitis (UC) and increases with disease duration and dysplasia. MUTYH, the human mutY homologue, is responsible for excising misincorporated adenine and for suppressing mutations caused by ROS. Nuclear expression of MUTYH is attenuated in UC.

We have a choice here: wait for the nutrition counselor prescribing the test to explain this in detail IF the value is unacceptable upon testing or define each unknown separately.  I’m willing to wait until the test results are in.  Do tell me if you’re not and we’ll explore these terms together.

Maybe we’ll have more luck with another term.  Which one, though?  Ummmm, okay, let’s take a look at Pyruvic Acid. The same dictionary tell us this is

CH3COCOOH, an intermediate in carbohydrate, lipid, and protein metabolism.

Now we could look up CH3COCOOH but what good would it do?  We have what we need. We know carbohydrates, lipids (fats), and protein have to be metabolized in order to be of any use to us.  This acid helps to do that.  We can understand how a lack of or surplus of this could affect us. I’d pay special attention to this component since it’s the metabolism of these components that give us energy… or in my case, seemingly not enough energy.

Let’s try another one.  How about Behenic Acid this time?  I found this definition at Dictionary.com (http://dictionary.reference.com/browse/behenic+acid?s=ts).

a crystalline, saturated fatty acid, C 22 H 44 O 2, obtained from plant sources, used chiefly in the manufacture of cosmetics, waxes, and plasticizers.

Frankly, the definition left me scratching my head and wondering why I would be tested for that.  Wait! I’ve got it, but it’s supposition. Maybe too coxemeticsmuch of that seeping into my system would cause a problem.  Clogging?  If so, clogging what?

Drugs.com at http://www.drugs.com/dict/behenic-acid.html told me it’s

A constituent of most fats and fish oils; large amounts are found in jamba, mustard seed, rapeseed oils, and cerebrosides.

And that it has a synonym:  N-docosanoic acid. This is getting frustrating.  It’s at times like these that I wish I did have all the answers, but – as I keep saying – I’m not a doctor.

Okay, one more shot – this time at the synonym. Oh boy, the information about this is written in deep chemistry terms.  That’s a foreign language to me.  I will have the same questions for my nutrition counselor when the test results are in as you probably have reading this blog.

Hey, maybe I could work with a word I know – like manganese. Oh, sorry, that means

manganesea mineral that is found in several foods including nuts, legumes, seeds, tea, whole grains, and leafy green vegetables. It is considered an essential nutrient, because the body requires it to function properly.

Thank you to WebMD at http://www.webmd.com/vitamins-supplements/ingredientmono-182-manganese.aspx?activeingredientid=182&activeingredientname=manganese for information we could all finally understand.  It doesn’t help to have loads of information about a component if the information doesn’t make sense to you.  I’m the one who’s meant to simplify explanations and I couldn’t understand enough to explain to you.

On a happy note, I am more than willing to share both my results and the explanations the nutritional counselor offers me when they arrive.  You know that saying about sometimes it just doesn’t pay to even get out of bed….Part 2Digital Cover Part 1

 

Until next week,

Keep living your life!

Never Heard of It

Before I write about what I never heard of, let me tell you what I have heard of: The National Kidney Foundation of Arizona Kidney Walk this Kidney Arizonacoming Sunday. Our t-shirts are ready, the banner is on the way, and all we need is you!  Pre-register for Team SlowItDownCKD at kidneywalk.kintera.org or just show up at Chase Stadium to register at 8:00 a.m.  Religious?  No problem; services will be held at the walk if you’d like to attend them.

So what have I never heard of?  The NutrEval (FMV Amino Acids) with Nutrient & Toxic Elements. This is a test my pre-diabetes counselor ordered for me. It consists of a blood drawer and a first void urine sample.

That in itself is interesting.  If you remember, when you have a 24 hour urine test for Chronic Kidney Disease, the first void is not used since this urine has been accumulating in your bladder the whole time you’ve been sleeping.  Apparently, this same accumulated urine is important for this urine containertesting.

You and I are exploring this together today. I hadn’t seen the blood drawer orders yet when I was walked into the lab directly from the counselor’s office.  Luckily, Jody Navarro, the tech on duty that day at this Sonora Quest Lab., pointed out that lipids were being tested  – which meant fasting.  I’d already eaten breakfast and lunch.

With a little mental rearranging, I saw I could just come back the next day.  Then Jody emphasized that I needed to bring the first urine void with me. Surprising, I thought.

The next day, back to the lab I went – although I knew the specimens would be sent out to Genova Diagnostics for the actual testing – with my refrigerated urine sample.  I tend to get up early and knew I wasn’t going to eat within half an hour of waking since this was a fasting test, so I wasn’t hurrying anywhere. Hence, the refrigeration.

Both Jody and Abigail Grimwade, who made the actual blood draw practically painlessly, greeted me and gave me copies of everything I asked for, which was everything.  I’m serious about understanding my health.

Okay, let’s backtrack a bit here. According to Genova Diagnostics’ website at https://www.gdx.net/product/nutreval-fm-nutritional-test-blood-urine, this is what the tests cover:

Metabolic Analysis assessment provides information on 45 key organic acids. These biomarkers are grouped into easy-to-understand categories, and provide insight for functional support in the areas of: malabsorption & dysbiosis; cellular energy & mitochondrial metabolism; neurotransmitter metabolism; vitamin deficiencies; and toxin exposure & detoxification need.protein

Amino Acids analysis features either plasma (37 total) or urine (41 total) amino acids. This assesses nutritionally essential and non-essential amino acids, as well as intermediary metabolites that augment an understanding of B vitamin need, and need for support of protein digestion & absorption.

Essential and Metabolic Fatty Acids Analysis provides a high level overview of the balance of various families of fatty acids in relation to each other: Omega 3, 6 and 9 Fatty Acids; Saturated Fatty Acids; and Monounsaturated Omega 7 and Trans Fats. It also provides key ratios for understanding cardiovascular risk, including the Omega 3 Index.

Elemental Profiles provide information in two categories: Nutrient Elements which evaluates intracellular nutrient status, and Toxic Elements which evaluate short-term toxic element exposure.

Oxidative Stress biomarkers highlight the body’s current state of oxidative stress and reserve capacity. Markers of oxidative injury assess cell membrane (lipid peroxides) and DNA (8-hydroxydeguanosine/8-OHdG) damage, while direct measurement of glutathione and CoQ10 provide insight into antioxidant reserve available to counter free-radical impact. Additional markers are available in our Oxidative Stress 2.0 profile.

Why did we need to know all this? Well, it seems that chronic disease – as in Chronic Kidney Disease – can be caused by nutritional deficiencies… and these tests could find them.  I know my pre-diabetes counselor’s eyes were lit up like the statue of Liberty at night when NYCshe realized she could order this testing for me.

Some of my readers have mentioned that this is state of the art testing that isn’t readily available and that they didn’t know Medicare would pay for this.  Looks like I lucked into this by simply choosing the counselor I did.

I would urge anyone with pre-diabetes to get this kind of nutritional counseling if your insurance covers it.  I have a far better understanding of how my blood glucose works now and what I can do to control it… and then there’s this testing to see what can be done about my chronic health problems.

What I found especially interesting is that the Creatinine, Urine (a CKD marker and stager) is present in this testing. I also noticed Potassium on the list of what’s tested for both deficiencies and toxicities. I am eager to receive my results and have them explained in detail, but that could take up to 14 days total, which means I need to wait for possibly 10 days.

Every time I research the test, I’m directed to Genova Diagnostics or a lab that sends the specimens to them.  While this test formerly cost thousands, the price seems to have come to the high hundreds in recent times. In attempting to plot the history of the test, I drew blank after blank.  This is considered pioneer bio testing.Genova

Maybe the best thing to do here is wait for my results and then explain them to you, so you may see if they have any relevance to your own health.

I was curious about first void urine being tested and speculated that it might be more concentrated. Medical Technology Avenue at http://medicaltechnologyavenue.blogspot.com/2008/12/first-morning-specimen.html confirmed my speculations.

The first morning urine is the ideal screening specimen because it is more concentrated than the random specimen.Part 2Book CoverDigital Cover Part 1

You’ll definitely see another blog about this once I review my test results.  Meanwhile, read my books!  Buy them on Amazon, borrow them, ask your library to order them if you don’t know anyone who has them (What!) and don’t have the money to buy them, but read them… and then write reviews.  The idea is to spread this info.  We all know I’m not going to get rich here, but I would like to see the information out there.

Until next week,

Keep living your life!

DON’T K.E.E.P. It a Secret

National Kidney MonthHello, Week Two of National Kidney Month.  Surely, you’ve gotten yourself checked for Chronic Kidney Disease by now.  After all, more than 20% of us here in the U.S. have it. That’s 10 million people. Mind boggling, isn’t it. Here’s the kicker: that’s as of 2010 – five years ago now – according to The National Kidney and Urologic Disease and Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/kustats/#3

But, wait, it gets worse. If you, like me, are over 50, your risk has increased.  Over 70 {Awk!  That’s only two years away for me.}, it increases even more.  What hurts for me is that so many people don’t know they have Chronic Kidney Disease. I’ve read statistics placing this at anywhere from 20 to 90%.  Rather than go on again about if-I-had-been-diagnosed-at-stage-1-rather-than-stage-3-I-would-have-had-more-time-to-slow-down-the-progression-of-my-ckd, let’s just say it’s easy to have yourself tested.

I’ve written about just needing a simple blood test and a simple urine test.  You can even have this done via the usual blood tests you already take if you usually take blood tests.  I have my pcp’s and nephrologist’s blood draw orders combined if they fall within two weeks of each other – with my doctors’  blessings. It’s not cheating, folks; it’s one less needle in your arm as I see it.

Well, what about if you don’t have blood tests regularly?  You could ask your PCP to write you orders for this. Most won’t do so without a visit, though.  Let’s say you don’t have the money, or can’t get an appointment early enough.  What then?K.E.E.P.

That’s where K.E.E.P. comes in. The acronym stands for Kidney Early Evaluation Program and is offered by the National Kidney Fund.  According to their website, this is what is offered.

  • Risk Survey

  • Body Mass Index (BMI): Height and Weight Measurements

  • Blood pressure check

  • ACR urine test for albumin (a type of protein) – For individuals at risk only!

  • Free educational materials

  • Opportunity to speak with a health care professional

Notice, no blood test.  Think of K.E.E.P. as a place to begin your kidney education. That risk survey and the urine test for “at risk” individuals are important parts of the program.  Over 50 – go to a K.E.E.P. event. Over 70 – definitely go to one.  These are not the only “at risk” definers, though. Add in the following.

  • Anyone with high blood pressure, diabetes

  • Anyone with a family history of kidney failure

  • African-Americans, Hispanics, Asians, Pacific Islanders and American Indians

  • Individuals who are obese (body mass index of 30 or above)

Now you can see why your BMI is measured and your blood pressure read.   Thank you to the National Kidney Fund at https://www.kidney.org/keephealthy for the above information.  If you’re interested – and I’m sure hoping you are – you can find the locations and dates of these on the upper right hand corner of the same page.  You’ll have to enter your geographical information, but that’s it.

That’s another option, but budgets are being cut all over the place.  So let’s say there’s no K.E.E.P. event near you. What now? How about the Path to Wellness program? What’s that, you say. It’s a partnership between the renal and heart communities for the following purpose according to the website of the Cardio Renal Society of America at http://www.cardiorenalsociety.org/ {The website does seem to be aimed toward medical professionals.}

Public Health Education and Early Detection

Path to Wellness is an integrative community-based screening program addressing the interconnections between kidney disease, heart disease, and diabetes. It encourages utilization of community-based or primary care services and empowering a diverse demographic of at-risk patients to make significant, positive changes in their personal well-being and quality of life.

In Arizona, the Arizona Living Well Institute is also involved in this project.  Dr. J. Ivie, the Director of Patient Services at the National Kidney Foundation of Arizona provides a more patient oriented description of the event.

Path to Wellness has already touched close to 400 Arizonans at risk of diabetes, heart disease and kidney disease by providing education, screening, self-management skills and connection to a medical home.  We are scheduling the first screening event of 2015 on Saturday, March 28th at the Salvation Army KROC Corps Community Center near South Mountain in Phoenix.

By the way, they are calling for volunteers to help out at this program, so please contact Dr. James Ivie via any of these methods if this interests you. I was recently made aware that high school students need to perform community service as a graduation requirement and was wondering if this is applicable if the students are over a certain age.  Again, a question for Dr. Ivie.

Phone:         602.845.7905

Fax:              602.845.7955cardiovascular

Address:      360 E. Coronado Rd. #180

                      Phoenix, AZ 85004

Email:          www.azkidney.org

Digital Cover Part 1I like to perform community service, too.  In this case, that service is for my kidney community.  Hmmm,  World Kidney Day is March 12. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is now available in both print and digital versions on Amazon.com.  The logical connection between the two for me is that World Kidney Book will be the day this book is free.  Remember I offered The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 free on February 2nd because it was my birthday? {Doesn’t every author offer their books free on their birthday?} This works the same way.  You just order the book.Part 2

Here’s how my mind works: I have dissolved in laughter because I just realized I was wondering if What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is feeling left out because there’s never been a freebie day for that book.  I get it!  It’s a book {but it’s my baby.}Book Cover

Whoa!  I’ve been getting calls that the blog address no longer works.  After a little gentle questioning, it came out that the callers were using the old address: https://gailrae.wordpress.com.  If you use that address, you’ll receive the following message:

“gailrae.wordpress.com is no longer available.  The authors have deleted this site.”  No I didn’t! I just changed the name to gailraegarwood.wordpress.com.  I’ll consider this a reminder to myself to leave well enough alone.

I followed a forum user’s advice to simply change the name, not realizing all the old blogs will be deleted.  I thought the site was being deleted and you would be redirected to the new address for all the blogs.  Silly me.  I am extremely thankful The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 were published before this mini catastrophe,  but am still not happy with it.  Oh well. Might as well choose it since I have to do the work anyway.

Hang on while I recreate the blog.   Well, actually, if you’re reading this, it’s already recreated.  Yay!

Until next week,

Keep living your life!

They’re Not Twins

Kidney ArizonaMarch is National Kidney Month here in the United States.  That makes it an even better time to have yourself screened for Chronic Kidney Disease. 28 million people have it and quite a few of them don’t know it.  Don’t be one of them.  All it takes is a simple blood test and a simple urine test.

Talking about blood and urine tests, I mentioned in passing on one or two of my blogs that your values and the reference range values on your lab tests may differ according to the lab you use, and loads of physical factors such as: being adequately hydrated, having voided your bladder, having gotten enough sleep, even how the specimens were handled.

I was in the unique position of taking these two tests once and then again two weeks later. Had the due date of the tests for each doctor been closer, I might have combined them and had the results of the one set of tests sent to each doctor. But my nephrologist needed his tests two weeks before my appointment, and my primary care physician {pcp} needed hers no less and no more than every three months since she was monitoring my bmpliver for the effect of a medication.

She was checking primarily for my cholesterol levels {which are better than ever and finally all within range, thank you very much!} and included the other tests because she is one thorough doctor. He, my nephrologist, was much more concerned with my kidney function.

The reference range values from the two different labs I used were not twins. For example, Sonora Quest, the lab my nephrologist uses, has the acceptable range for creatinine as 0.60 – 1.40.  But my pcp uses LabCorp. which states that it is 0.57 – 1.00 mg/dL. If you look to the right, you’ll see an older test result using mg/dL.

I wasn’t really sure what mg/dL meant, so I looked it up. According to the Free Dictionary at http://acronyms.thefreedictionary.com/mg%2fdL, this means

Milligrams per Deciliter

That was my reaction, too, so I used the same dictionary for both words used in the definition.  Milligrams means

A unit of mass equal to one thousandth (10-3) of a gram

while deciliter means

100 cubic centimeters

We are talking small here!Book Cover

The results for this test were a little different, too.  On February 10th, it was 1.11, which was not out of range for Sonora Quest.  But two weeks later, it was 1.1 – ever so slightly lower – which was out of range for LabCorp. This is a bit confusing.

Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see if we can shed some light on this. On page 21 {Use the word search if you’re using the digital version of the book.}, I wrote

A higher creatinine result could mean the kidneys were not adequately filtering this element from the blood.

By the way,

Creatinine is a chemical waste product that’s produced by your muscle metabolism and to a smaller extent by eating meat.

Thank you to The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/creatinine/basics/definition/prc-20014534 for this clarification.

All I can say is that seemed like earth shattering information when I was first diagnosed with CKD.  Now that it’s seven years late, it just means I have CKD.  It’s sort of like reiterating I have this slow decline in the deterioration of my kidney function no matter which acceptable range we use.

Another difference in value ranges was BUN.  This is your urea nitrogen. Medline Plus at blood drawhttp://www.nlm.nih.gov/medlineplus/ency/article/003474.htm explains

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.

This could be a ‘Who cares?’  statement except that the BUN is used to measure your kidney health. Sonora Quest’s acceptable range is 8-25 mg/dL, while my LabCorp’s is 8-27. At the first lab, my value was 22 and at the other, two weeks later, it was 17. Both were in range, but let’s say – just for argument’s sake – my value had been 26.  Would that mean I was out of range?  It would at one lab, but not the other.  I think I just answered my own question as to why I need to have my doctor interpret my lab results even though I can read them myself.

Well, what makes these levels go up or down? Thank you WebMD for this simple to understand answer.

If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher. Liver disease or damage can lower your BUN level. A low BUN level can occur normally in the second or third trimester of pregnancy.

Aha!  We know that as CKD patients we are restricted to five ounces of protein a day. Why combine an inability to “remove urea from the blood normally” with an overabundance of protein?

Hopefully, some of the questions you didn’t even know you had were answered today.

Part 2I’m sorry if you missed out on your free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  by being the third buyer during the last part of February. While I’ve used up my freebies for that book, I’m now working on a free day for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 on World Kidney Day, March 12.  Keep watching for more news about this as Amazon and I keep working on it.

Again, if you’d like to join us for the Kidney Walk on April 19 at Chase Stadium in Phoenix, why not go to the Walk’s website at http://kidneywalk.kintera.org/faf/home/default.asp?ievent=1125145 and join our team, Team SlowItDown. We’ll be looking forward to seeing you there.

Until next week,

Keep living your life!

Urine or You’re Out

How odd that urine is so important to us.  Make no mistake; if you have Chronic Kidney Disease, you’re always keeping an eye on it.  I’m pretty sure you all know about the color chart to see if you’re hydrating enough.  If you don’t hydrate enough, your kidneys can’t do their jobs as well… and they’re already struggling to do them. This is the least complicated urine hydration chart I’ve seen.urine hydration

Of course, I’ll go back to remind you of just what the jobs of your kidneys are.  My source?  My first book about our disease, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 7.

They filter as many as 200 quarts of blood per day to rid us of roughly two quarts of waste and extra water.

These two organs, the master chemists of our bodies, have several functions: regulating the fluid balance in the body, providing vital hormones, producing erythropoietin, and producing the renin that regulates blood pressure. This is why CKD patients need to be careful about sodium, Book Coverpotassium, chloride, calcium, magnesium, and phosphates. Your nutritionist may not even mention magnesium to you since this constitutes only 1% of extra cellular fluid. Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.

Wait a minute; I think we need to go even further back.  A picture of the urinary tract would probably be helpful here, too.urinary

Okay, now I can start writing about your urine. I’m pretty sure I mentioned in an earlier blog how disturbed I was to be one point over the normal range for microalbumin. Here’s a definition of just what that is.

Micro, or very small amounts, of albumin in the urine. Ur stands for urine. {As in the test for proteinuria.} 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.

Read that last sentence again. There seems to be a Catch 22 here. As a Chronic Kidney Disease patient for the last seven years, this has never shown up in a urine test for me before. I am including both the 24 hour variety and the random {Dipstick} variety in that never.

So now we know about microalbumin.  What about proteinuria?  Notice the ur in the word.  We just learned that means urine.  This is another indication of kidney disease.  I have never been out of acceptable range for this.  According to WebMd at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine

Healthy kidneys do not allow a significant amount of protein to pass through their filters. But filters damaged by kidney disease may let proteins such as albumin leak from the blood into the urine.

Glomerulus-Nephron 300 dpi jpgFilters?  This diagram of the glomerulus may help.

If albumin is a protein, are proteinuria and microalbumin the same? Well, no.  Health Communities at http://www.healthcommunities.com/proteinuria-and-microalbuminuria/overview-of-proteinuria.shtml tells us

Albumin is particularly useful in absorbing bodily fluid into the blood. Because the albumin molecule is relatively small, it is often among the first proteins to enter the urine after glomeruli are damaged. Therefore, even minor kidney dysfunction is detectable with proper diagnosis of microalbuminuria.

All right, got it?  Albumin is a protein.  It will show up as microalbumin in your urine test.  It may also show up as proteinuria since albumin is a protein. Once upon a time, you always needed to conduct a 24 hour urine test for this information, but…

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

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

And that is where creatinine comes in and why you need to be aware of your creatinine levels in your urinalysis. By the way, blood tests will also report the amount of albumin and creatinine in your blood. This could promote another discussion, one about Blood Urea Nitrogen tests, but it would be out of place here since that’s not part of the urine.

As you can see this is a complex topic.  You need to be aware of what the color of your urine can tell you about your hydration – whether or not you have Chronic Kidney Disease – and monitor both your microalbumin and proteinuria, as well as your creatinine.

41DsvandphL._BO2,204,203,200_PIsitb-stThe Book of BlogsAnother complex topic is editing the new print books.  The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 aren’t quite ready.  I’m working with a new publisher and we’re just getting to know each other’s styles.  The good part about that is you get two books for the price of one on Amazon.com digital until the print books are ready.  Look for The Book of Blogs: Moderate Stage Chronic Kidney Disease.  Once the print copies are ready, I promise a day of the digital copy for free… if that perk is still available to me at that time.

I don’t know about you, but I get just as tired from overdoing it for good things as well as bad.  This weekend was a test of how well I could adhere to my renal diet with date day, a memorial dinner, and a celebratory champagne brunch.  Being human, I blew it on ice cream.  My pounding heart and lightheadedness have convinced me: no more sugar treats!  Although, some of my non-CKD friends report the same symptoms upon a sugar overdose…

Until next week,

Keep living your life!

Up and Down…and Up…and Down

I usually base the blog upon what’s happening in my medical life or those of my family members and friends.  I thought I wouldn’t have anything to write about today. But then I got my latest lab results.  Ugh!

eGFR MDRD Non Af Amer >59 mL/min/1.73 47

There’s been some variation in my eGFR for the last few months and it hasn’t all been good.  What’s the eGFR, you ask.  Let’s start with the GFR and use the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 132} for the definition:

Glomerulus-Nephron 300 dpi jpg“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

Wonderful, except we need to know what glomerulus means since the suffix ‘ar’ tells us that glomerular is an adjective or word that describes a noun – a person, place, thing, or idea.  In this case, the noun is glomerulus.   Thank you dictionary.reference.com for the following:

“Also called Malpighian tuft, a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”glomerulus

Yes, yes, I know more definitions are needed.  Back to the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 134 this time):

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

A tubule, as you’ve probably guessed, is a very small tube.  This is when having been an English teacher for decades pays off in my kidney work!

Maybe we should define capillary too, in case you’ve forgotten what it is. This time I used Merriam-Webster.com at MedlinePlus.

“a minute thin-walled vessel of the body; especially: any of the smallest blood vessels connecting arteriole with venules and forming networks throughout the body.”

In other words, they’re the smallest blood vessels in the body.

Alright, we’ve got our vocabulary in place; now why is the eGFR so important? As stated in the definition above, it is used for staging your Chronic Kidney Disease.  Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts.  The higher the stage, the worse your kidney function.stages chart

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

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

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

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

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

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

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

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

Back to my original concern about the GFR results in my labs.  Why did it fluctuate from 53 in August of last year, to 47 in February of this year, to 52 in May, to 56 in August, and to 47 last week? All the values are within stage 3A and I know it’s only a total fluctuation of six points, but it’s my GFRfluctuation so I want to know.  And that’s what started this whole blog about GFR.

I discovered that different labs may use slightly different calculations to estimate your GFR, but I always go to the same lab, the one in my doctor’s office.  Nope, that’s not my answer.

According to the American Kidney Fund, “…this test may not be accurate if you are younger than 18, pregnant, very overweight or very muscular.”  No, these situations don’t apply to me either.

Maybe I’m going about this all wrong and should look at the formula for arriving at GFR. The National Kidney Disease Education program lists the formula which includes your serum creatinine.  Aha! Maybe that’s the cause of the variation.  First a reminder: creatinine is the chemical waste product of muscle use. {This is a highly simplified definition.}

You’ll find this on your Comprehensive Metabolic Panel Blood Results, should you have your results. The normal values are between 0.57 and 1.00 mg/dL.  Mine were above normal for each test, a sign that I have CKD.  As if I didn’t already know that. These results were also lower each time my GFR was higher.

iPadI researched and research.  My final understanding is that not only can CKD elevate your creatinine, but so can dehydration, diabetes or high blood pressure.  If your creatinine is elevated, the results of the GFR formula will be lowered.  That’s enough information to allow me to rest easy until I see my doctor next week.

Some of this was pretty technical and I couldn’t give you many exact web addresses since my computer is having its own issues today.  You may want to try an online GFR calculator just to see how it works.  You will need your serum creatinine value {serum means blood, so this is not to be confused with the urine creatinine test} to do so.  I like the one at DaVita.com.

Until next week,Book Cover

Keep living your life!

Pro on Probiotics?

probioticsMy husband takes probiotics and they work for him. This is why he takes them, as explained by http://www.theralac.com/why-take-probiotics.aspx:

“For healthy people, probiotics can help boost the immune system and increase the absorption of important minerals and nutrients. For people with digestive problems, probiotics can be taken in higher doses to help regain digestive balance.”

I thought they might be worth a try, but my nephrologist disagreed.  We had our discussion about this right after I’d been a guest on a radio show during which the pros and cons of using probiotics for chronic kidney disease were discussed. This was just about the same time the information I’d requested from Kibow arrived.  This is from their website at www.Kibow.com:

“Certain probiotic microorganisms can utilize urea, uric acid and creatinine and other toxins as its nutrients for growth. Overloaded and impaired kidneys have a buildup of these poisonous wastes in the bloodstream. Probiotic microorganisms multiply, thereby creating a greater diffusion of these uremic toxins from the circulating blood across the lining of the intestinal walls into the bowel. This increased microbial growth is excreted along with the feces (which is normally 50% microbes by weight).

Enteric toxin reduction technology uses probiotic organisms to transform the colon into a blood cleansing agent, which, with the aid of microbes, indirectly removes toxic wastes and helps eliminate them as fecal matter. Consequently, a natural treatment for kidney failure is possible to maintain a healthy kidney function with the oral use of Renadyl™. The patented, proprietary probiotics in Renadyl™ have been clinically tested and shown to be safe, free of serious side effects, and effective in helping the body rid itself of harmful toxins when taken for as long as 6 months.”

Let’s slow down a bit.  We’ll need some definitions, so I turned to my favorite user friendly online medical dictionary, www.merriam-webster.com for the following:

CREATININE: (I know you know this one; this is just a reminder) a white crystalline strongly basic compound C4H7N3O formed from creatine and found especially in muscle, blood, and urine

ENTERIC: of, relating to or affecting the intestines; broadly:  alimentary

PROBIOTIC: a preparation (as a dietary supplement) containing a live bacterium (as lactobacilli) that is taken orally to restore beneficial bacteria to the body; also:  a bacterium of such a preparation

UREA: a substance that contains nitrogen, is found in the urine of mammals and some fish, and is used in some kinds of fertilizerdictionary

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

What I found on Kibow is a mouthful… and an advertisement.  I am not endorsing Renadyl.  However, there is an animation at http://www.renadyl.com/How-Renadyl-works which visually clarifies the information above. While I understood the process better after watching the animation, I’m still leery of that six month warning, especially after I found this at the bottom of one of their pages:

“* These statements have not been approved by the Food and Drug Administration. This product is not intended to diagnose, treat, cure or prevent disease. Results may vary.”

In addition, this product contains psyllium seed husk, something I was cautioned to avoid. It seems my nephrologist is not the only one who feels this way. http://www.metamuciladvisor.com/avoid-psyllium-and-metamucil-in-kidney-disease/ is the webpage of Metamucil, a product whose main ingredient is psyllium.  However, this conscientious company also posts this information on their website:

Psyllium Products and Their Minerals

There are certain psyllium products that contain a large amount of minerals that individuals with kidney disease cannot process. Some psyllium products contain high volumes of psyllium seed huskspotassium, sodium and magnesium, which if a person with kidney disease consumes can cause a lot of problems. If an individual’s physician gives permission on taking psyllium then they need to make sure the psyllium product follows their restricted diet.

Fluids Required With Psyllium

When consuming psyllium six to eight glasses of water must be consumed to keep from having any uncomfortable side effects. This can be a problem for an individual with kidney disease since the kidneys cannot effectively filter the fluid. Since the proper amount of fluid cannot be consumed this can cause side effects and make the natural fiber less effective.

Things to Consider

One of the number one complaints in individuals with kidney disease is constipation due to the fact fluid restrictions, vegetables and more. Since there are many restrictions an individual has with kidney disease with their diet there are other safe options to choose from. Discuss these other safe options with your physician to relieve constipation.

Maybe it’s just me, but I don’t understand why someone with kidney disease would want to take a product that will harm them.  As a matter of fact, I don’t understand why Kibow, the makers of Renadyl, don’t post such a warning on their site. Hmmm, I wonder if the  “…safe, free of serious side effects, and effective in helping the body rid itself of harmful toxins when taken for as long as 6 months” statement included in their material IS their warning.  And just how many people catch that one sentence anyway?

At http://clinicaltrials.gov/show/NCT00760162, I did find the record of a study filed by Kibow in 2009, but not the results of the six month trial.  The record was processed on November 9, 2014 which is very recent.  Either I don’t know how to find the outcomes of the trial or they are simply not there. I suspect the latter.

I have no intention of vilifying Kibow, but do find this to be another case of be careful what you choose to take, very careful.  Watch the small print, talk to your nephrologist before making any decisions, and make sure you guard whatever you have left of your kidney function.

Book CoverThank you for your continued interest in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Keep in mind what a terrific holiday gift this is… and that next year, you’ll be able to gift the same person with What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s little sister: The Book of Blogs.

Until next week,

Keep living your life.

What If You Don’t Go?

NYCWe just got back from New York, which included stays in three different places. Only one- my buddy’s pied `a terre in Bay Ridge had a private bath… one bathroom for the two of us.  In my niece’s house on Long Island, we shared two bathrooms with two other adults and four children.  In Manhattan, we shared two baths with twenty other tourists. This didn’t exactly make for instant bathroom use when you needed it.

To add insult to injury, I’ve grown very accustomed to Arizona’s immaculate public bathrooms with automatic faucets, flushes, soap dispensers, and towels. Let’s just say New York has quite a bit of room for improvement in this area. The end result was that I didn’t use the facilities as often as I needed to.

And I started wondering… what’s happens to the urine you don’t void?

toliet First things first: according to National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)National Institutes of Health (NIH)  at http://kidney.niddk.nih.gov/kudiseases/pubs/yoururinary/#points,

“The amount of urine a person produces depends on many factors, such as the amounts of liquid and food a person consumes and the amount of fluid lost through sweat and breathing.”

It was New York; it was not only hot, it was humid.  I was drinking my allotted 64 ounces of liquid daily. I was breathing – as usual – and I was sweating (perspiring?) quite a bit. Of course, I was eating, too.

In What Is It And How Did I Get It? Early Stage Kidney Disease, I explained that Book signing

“Ingested food and liquid are digested in the stomach and bowels, and then absorbed in the blood.  A renal artery carries the blood waste and water to the kidneys while a renal vein carries the filtered and sieved waste from the kidneys…..Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.

The problem with unregulated minerals, such as sodium and potassium is that these minerals are needed to remain healthy but too much in the bloodstream becomes toxic. The kidneys remove these toxins and change them into urine that enters the bladder via the ureter.  Look at the picture of a front view of your internal organs …. [You can see]  the kidneys, then the ureter above the bladder.  Below the bladder is the urethra, the passage to the outside of your body. This is, of course, a highly simplified explanation.  The toxins would build up and poison you if the kidneys were damaged.”

This is right at the beginning of the book on pages 2 and 3.

Now that we know how it works, we can go back to my original question: What if you don’t urinate when your bladder is full?urinary

Well, maybe we should explore the bladder a bit more. WebMD at http://www.webmd.com/urinary-incontinence-oab/picture-of-the-bladder tells us the following about the bladder:

“The bladder stores urine, allowing urination to be infrequent and voluntary. The bladder is lined by layers of muscle tissue that stretch to accommodate urine. The normal capacity of the bladder is 400 to 600 mL. During urination, the bladder muscles contract, and two sphincters (valves) open to allow urine to flow out. Urine exits the bladder into the urethra, which carries urine out of the body.”

So, there I was with a full bladder and my body telling me to empty it, but I didn’t.  What happened to the urine?

bladderIt’s time to mention that the ureters don’t have any way to stop the urine flowing back into the kidneys if you don’t void.  There are two sphincters at the bottom of your bladder leading into the urethra, but you can only voluntarily control one of them.

Interesting fact: the urethra is longer in men because it passes through the penis.  Sorry fact: because our urethras are shorter, we women are more prone to urinary tract infections.

Uh-oh, urine was moving back into my poor, already compromised kidneys. This urine flow back could further damage the capillaries and tubules making them even less effective at filtering my blood. The kidney’s pelvis and calyces – their central collection region – might become dilated, causing hydronephrosis.  Or I might end up with a kidney infection from the bacteria forced back in.  This is called pyelonephritis.

Hang on there.  I’m going to use the medical dictionary at http://www.merriam-webster.com/medical  for some definitions here.

CALYX (plural ca·lyx·es or ca·ly·ces  also ca·li·ces): a cuplike division of the renal pelvis surrounding one or more renal papillae

CAPILLARY a: resembling a hair especially in slender elongated form   b: having a very small borekidney interior

HYDRONEPHROSIS: cystic distension of the kidney caused by the accumulation of urine in the renal pelvis as a result of obstruction to outflow and accompanied by atrophy of the kidney structure and cyst formation

RENAL PAPILLA: the apex of a renal pyramid which projects into the lumen of a calyx of the kidney and through which collecting tubules discharge urine

RENAL PELVIS: a funnel-shaped structure in each kidney that is formed at one end by the expanded upper portion of the ureter lying in the renal sinus and at the other end by the union of the calyxes of the kidney  

TUBULE: a small tube; especially: a slender elongated anatomical channel

But, wait before you get all excited about the damage I’ve done to myself – or worse, yourself. You should know it would take a tremendous amount of flow back before any of this happens.  Be aware of your urge to urinate, follow through if you can, and don’t worry if you can’t every once in a while (But remember that I’m not a doctor.) And I wonder why I’ve felt the urge to urinate the whole time I’ve been writing today’s blog.

Many thanks to the oddly informative website http://www.straightdope.com/ for pointing me in the right direction for answers to my question. kidney-book-coverI have a question for all of you:  I am thinking of turning the previous blogs into a book; is that something you’d be interested in?

Until next week,

Keep living your life!

How I Connect Coyotes and CKD

Sunday evening is the Sustainable Blues dance lesson at the Blooze Bar.  When Abby teaches, I go and then I do some marketing on the way home.blues

When Bear was helping me unload the groceries from my car last night, he pointed out a coyote casually walking down the street.  We’re only a quarter of a mile from an arroyo and often see wild life there, but other than bunnies and Gambrel Quail, not in front of the house.

This means Bella needs to stay in the house from before dusk until after dawn since those are prime hunting times for the coyote.  Her dog door was closed last night.  While she is a medium sized dog, I wouldn’t be surprised if a pack of coyotes could devour her… and that’s why IMAG0269 (1)they’re on our block.

These creatures are hungry and they want red meat.  They’re adaptable and will eat anything when they’re hungry enough – even garbage – but 90% of their diet consists of red meat when they can find it.  Notice I’m not citing any websites here.  This is common knowledge when you live in the desert, something I’ve done for the last dozen years.

The coyote sighting got me to thinking.  They eat red meat.  Humans do, too.  Yet, as Chronic Kidney Disease patients we’re urged away from this practice.  I accept it, but I’ve forgotten why and thought you might have, too.coyote

As usual, let’s start at the beginning.  Precisely what is ‘red meat’? According to the Bing Dictionary, red meat is “meat that is red when raw: meat that is relatively dark red in color when raw, e.g. beef or lamb.”

I don’t eat lamb and never have due to some childhood questioning as to why a child should eat another child. (Okay, so I was a deep thinker even then.) Red meat was the staple of the family’s diet when I grew up and no meal was considered complete without it. That’s not the case now.

red meatWebMD has a truly illuminating three page article debating the merits and demerits of red meat at http://www.webmd.com/food-recipes/features/the-truth-about-red-meat. Most of it deals with the protein and fat content.  That is something that should concern us as CKD patients.    (It also explains why pork is considered a red meat rather than a white meat as a former colleague at Phoenix College tried to convince me.)

Okay, so fat – and hence, cholesterol – is something that could adversely affect your heart, not great for anyone including us.  But, as CKD sufferers, it’s more the protein content of red meat that concerns us right now.

In What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, protein is defined as “Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes, and antibodies.”  That’s on pages 134-5 for those of you with a print copy of the book.  Those of you with a digital copy, use the word search function.

That definition says a lot.  Let’s take it bit by bit.  Amino acids, simply put, are “any one of many acids that occur naturally in living things and that include some which form proteins.”  Thank you, Merriam Webster Dictionary.  Did you notice that they may form proteins?  Keep that in mind.Book Cover

So what are peptide bonds, then? This is a bit more complicated, so I went to Education Portal at http://education-portal.com/academy/lesson/peptide-bond-definition-formation-structure.html#lesson for the most easily understood definition: “Peptide bonds are the key linkages found in proteins. These bonds connect amino acids and provide one of the key foundations for protein structure.”  Again, proteins.  This is a bit circular, but the important point here is that both are involved in the production of protein.

The renal diet I follow restricts my daily protein intake to five ounces a day, but why? Back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, page77 this time:

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

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

Glomerulus-Nephron 300 dpi jpgrenal 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.

For those of you who may have forgotten, phosphorus isn’t troublesome in early or moderate stage CKD, but can be in Stages 4 and 5.  Phosphorus works in conjunction with calcium to keep our bones and teeth healthy, but it has other jobs, too.  Compromised kidneys cannot filter out enough of this, though.  That can lead to calcification in parts of the body.

Confession time: after six years of following the Northern Arizona Council of Renal Nutrition Diet, I am not attracted to red meat.  Bear’s family traditionally has standing rib roast for Christmas and ham for Easter.  I will gladly cook them for the family – or buy them already cooked – but I’m fine with the steamed vegetables and a taste, a little one at that, of each of the meats. We don’t buy red meat when we market (except when Bear has an urge) and rarely eat it in restaurants. It wasn’t that hard to get out of the habit of always having red meat.

Until next week,

Keep living your life!

Not ON the Water, IN It

It’s hot, 112 degrees already and summer has just started. Much as I’d love to, I can’t stay in the house writing all day, every day. I also need to exercise on a daily basis… as do you if you have Chronic Kidney Disease.

What’s that? Why do you have to exercise if you have CKD, you ask? Let’s go back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, page 100, for the answer to that one. (Digital book owners, don’t forget to use the search document function instead of the page number.)Book Cover

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

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

I’ve mentioned water walking as an exercise and gotten quite a few questions about it. I have to admit I’d never heard of it before I moved to Arizona and met Bear. His house is in a senior citizen community that has a community center with a water walking pool.

It was exciting to be doing something I’d never done before and questioned him unmercifully, although he kept telling me you get in a pool that has lanes and walk. I could not visualize it, so I went online to see what it looked like. Then I couldn’t imagine what it would feel like, especially for someone who always wants to be near water rather than in it.

The pool was enormous to my water walking pool virgin eyes. There were shady parts and sunny parts. Uh-oh, I was going to have to get a hat with a bigger brim to protect my neck and shoulders from the sun, too. Oh, and water soluble sunscreen.sun hat

I couldn’t make sense of the arrows on the pool floor and the curvy shoulder high dividing walls between lanes until I was actually in the pool. I started out in waist high water following the arrows and keeping in the lanes they pointed to on different sides of the dividers until I found myself in chin high water when we completed our first circuit.

water walkingNow it all made sense. It was just like traffic lanes and directional markings on the road when you drive! Of course, waist and chin high are relative. I’m 5’5’, so Bear’s 5’10” meant the water was not as high on him.

There’s another benefit to water walking if you have arthritis. You’ve read my complaints about arthritis here and even in the Wall Street Journal column by Laura Landro about CKD Awareness activists (I still prefer being called an advocate). If you missed it, you can read that article in the January 20th, 2014 blog.

I went to the site of The Arthritis Foundation at http://www.arthritistoday.org/what-you-can-do/staying-active/activity-types/water-walking.php and read the following:

“Like all water exercises, water walking is easy on the joints. ‘The water’s buoyancy supports the body’s weight, which reduces stress on the joints and minimizes pain,’ says Jones [an aquatic coordinator]. ‘And it’s still a great workout. Water provides 12 times the resistance of air, so as you walk, you’re really strengthening and building muscle.’ You do not bear weight while swimming and walking, however, so you’ll still need to add some bone-building workouts to your routine.”

My almost constantly complaining knees were quiet in the water walking pool. My slightly painful hip didn’t seem to hurt. And, best of all, my elbows weren’t aching. I’m sold. What makes it even better is that water walking strengthens your muscles.

The bottom of the pool is purposely rough to prevent slips. After one circuit without water shoes, I knew I’d have to get some. While they were not severely damaged, I did notice annoying little scraps and cuts on the soles of my feet, especially my toes.water walking shoes

That probably means I was walking on my toes, something the Mayo Clinic at http://www.mayoclinic.org/healthy-living/fitness/multimedia/aquatic-exercise/sls-20076730 suggests you NOT do.

“In water that’s about waist-high, walk across the pool swinging your arms like you do when walking on land. Avoid walking on your tiptoes, and keep your back straight. Tighten your abdominal muscles to avoid leaning too far forward or to the side.”

I’ll also have to work on tightening my abdominals since I walked into the wall or the dividers a few times. I knew I wasn’t drunk (I don’t drink), so now I know why this happened.

A non-medical site, Ask.com, had some information about how you can water walk in any water. After all, not everyone has access to a water walking pool.

• Walk forward and backward with short steps, long steps, average steps, or step kicks.

• Move in a pattern of a circle or square. Be sure to go in both directions to balance the demands on your body.

There are more suggestions about technique at their site: http://spas.about.com/od/exercise/a/waterwalking.htm

SlowItDown business card

The big news here these days is that SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease are combining their Facebook and Twitter accounts. When you want to catch up with SlowItDown, just go to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Facebook and Twitter accounts. There will still be a daily tidbit about our disease on both. It occurred to me that I was doing double duty (Say that three times fast!) since both deal with the same issue.

Until next week,
Keep living your life!

Oh, By The Way….

In honor of National Kidney Month, I asked my daughter Nima Beckie (blogger extraordinaire at Is What It  Is) to guest blog explaining what it’s like to be the grown child of a Chronic Kidney Disease patient.  I think she’s outdone herself (of course, I might just be a smidgen prejudiced, but I don’t think so.)nima kidney

Several years ago my mom, Gail Rae-Garwood, came to us all and told us she’d been diagnosed with Chronic Kidney Disease. At the time none of us had the first clue what that meant (Actually, at the time I might have thought it was a distant cousin of an EKG.) and couldn’t quite put two and two together.

I’m caring by nature and want to help, almost to the point where it can become overbearing. From my uneducated fear came wanting to make sure my mother was getting enough rest if we were out when I was visiting and asking all the time, “Have you had enough? Do you need a rest?”

laIf you’re an adult child with parents who have kidney disease…DON’T DO THIS!!! What I learned along the way is that while your parents and loved ones truly appreciate your care and concern, they don’t want you babying, coddling, or suffocating them.

Here’s what you CAN do instead. Ask questions and educate yourself. Get involved in the kidney community when you can. Show your support that way.

I got involved because my mother wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I helped out by acting as a reader for her, and then helping her approach the somewhat awkward (for her) task of Social Media.

The more I went back and read her blog, or helped out with Facebook, or Twitter, or read chapters of the book, the more educated about Chronic Kidney Disease I became.

I know that too much information thrown at you once can be like “Whoa?! What?!” Honestly, I still refer to the blood test I get to check for kidney disease as a BUN (the kind you eat) as opposed to a B.U.N., and am still not in the least bit fluent in medicalese.Book Cover

Last October, I took a big step—actually about eight miles worth of them. It was important to me to not just be an activist for the kidney community online but in person as well.

I made my way to Foley Square in New York City near where I live (close to my Mom’s hometown), donned an orange tee-shirt, and spent my morning volunteering for the GNYKF (Greater New York Kidney Foundation).

I helped others who were there to walk sign the banner that would be carried in front of the walkers. I’d ask each person, “Why are you here?” “Who are you walking for today?” So many faces, and so many stories and there isn’t one that didn’t touch my heart.ny pix

A lot of people were there for there for their family members, some who sadly didn’t make it. One was a dad whose 12 year old son was waiting for his second transplant, as the first one didn’t take. He was so proud of his son, but you could see the fear and hurt for his son in his eyes.

Another woman looked at me, and said, “I’m here because I’m waiting for a kidney. Is that a good enough reason?” I quickly walked around to the other side of the table to give her a big hug. I told her, just like, I’ll telling all of you. “I want you to know you are my hero. I know how hard you fight everyday, and I know it’s not always easy. I see you.” She said her husband told her that all the time, and she never believed him.

Another little girl was there because a girl in her class “…was sick with kidney disease” and she wanted to help her. I asked her if she knew where her kidneys were… (Sort of…). I showed her, and told her, “You are doing an awesome thing for your friend and should be so proud of yourself.” Then I made her give herself a pat on the back (and may have whispered to her mom that there was a face painting table in the corner 😉 )GNY

Lastly, I walked with so many people all wearing orange all the way over the Brooklyn Bridge and back – all in support of the same cause, all hoping for a cure. On the way back, I managed to snap a picture of a man taking his orange bandana from his head, and tying it at the halfway point of the Brooklyn Bridge for people fighting kidney disease everywhere.

There really are no words for moments like that. I’d worn the bracelet my mom bought for me not long after she’d moved to Glendale so she’d be with me. As I got to the finish line, the song “New York State of Mind” by Alicia Keys was playing, which was just so perfect, since I was walking for my mom in her home state. I crossed under the balloons, and called my mom.

She couldn’t pick up because she was having a bad day. Severe bronchitis from a weakened immune system. I left a voicemail, “I want you to know, this is for you. I see everything you do. I know how hard you work, even on days when it isn’t always easy, because you don’t feel well. I know how much you help people. You are and forever will be my hero. I love you.” I’ll let her tell you what she said in response…I still have it saved on my phone.sad

Here’s my last piece of advice, and it’s a biggie. Get yourself tested. Every time you go to a doctor, it’s up to you to mention to your doctor, ”Oh by the way…I have a family member that has kidney disease,” and request both your B.U.N and creatinine levels. This is simple blood work that takes two seconds but, in the end, could save you a lot of heartache.

Actually, I want to take that back a second, EVEN IF YOU DON’T have a family member with kidney disease, you should be getting checked regularly and educating yourself.

kidney-month-2014-v1More than half the population in this country is at risk for kidney disease and many of them don’t know it. That’s an awfully big number, and it doesn’t need to be. A smart lady who you may know raised me to believe that knowledge is power.  Educate yourselves, educate your friends, and get tested…Happy National Kidney Month!!

Well done, honey.

Until next week,

Keep living your  life!

And Now for Something a Little Different

Have you ever taken one of those silly little Facebook quizzes?  I usually don’t, but I did yesterday… and discovered that my mental age is 28.  Well, that explains a lot. The truth of the matter is that I will be 67 on Sunday.

As a younger woman, I lost my birthday to the beginning of the new term in whatever high school I was teaching: five new classes for my birthday. Now I lose it to Super Bowl Sunday.  Although this year, I find I’m losing it to something else too, and I don’t mind that at all.

wsjAfter last week’s Wall Street Journal article (Oh, you haven’t read it yet?  It’s included in last week’s blog), I received a bunch of requests to include information in the blog.  Some were for profit.  Those I immediately discarded.

Some were for public relationships coverage.  I replied I would consider a trade if they would publicize SlowItDown, my project to bring free CKD education by trained educators to any community that needs it. Never heard from them again.

And then there was this one from Cameron Von St. James about LungLeavin’ Day. I thought and thought about it since the .com threw me, but finally decided that there was a reason LungLeavin’ Day is the same day as my birthday and I just happen to write a medically associated blog.  Thank you, Cameron, for sharing this:

http://www.mesothelioma.com/heather/lungleavindaylung

Unfortunately, it was beyond my computer capabilities to reproduce or even copy the contents of the site to the blog.  Do click on it.  It is worth your while.

Of course, you’re probably wondering what this has to do with Chronic Kidney Disease.  Let me explain.

Just as with CKD, early detection of mesothelioma certainly helps in treating it.  Screening the at risk population- those who have been exposed to asbestos – is an important part of detecting the disease, just as with CKD. However, there are reasons to be extra careful about diagnosing mesothelioma in kidney patients.Book Cover

According to PubMed, part of the US National Library of Medicine of The National Institutes of Health,

“Serum mesothelin concentration is elevated in individuals with renal impairment. Renal function should therefore be taken into account during interpretation of this assay.”

You can read more about the September, 2011 study which resulted in this conclusion at: http://www.ncbi.nlm.nih.gov/pubmed/21333373

I wasn’t clear about serum mesothelin so I researched it. MedicineNet.com tells us that mesothelin is “A protein attached to the cell surface that is thought to have a role in cell-adhesion and possibly in cell-to-cell recognition and signalling. Mesothelin is so named because it is made by mesothelial cells. A monoclonal antibody, which recognises mesothelin, binds to the surface of cells from mesotheliomas and some other tumors but not to healthy tissues except for mesothelium.” You can find more, but it is definitely written in medicalese, at: http://www.medterms.com/script/main/art.asp?articlekey=25335.

So serum mesothelin is measured during a blood test.  This tells your physician if you have mesothelioma and, if you do, how far it has progressed.  BUT, if you have kidney disease, your readings for serum mesothelin may be elevated.  What a Catch 22!

A little more on this.  Serum means “The clear yellowish fluid obtained upon separating whole blood into its solid and liquid components after it has been allowed to clot.”  This definition is from The Free Dictionary, which you can find at: http://www.thefreedictionary.com/serum.

mesoYou probably didn’t need that defined, but I wanted you to see where in the blood you would find this indicator of mesothelioma.  Notice that your creatinine measurement is also taken from the serum.

Years ago, seemingly in another lifetime – when I worked in McKee Vocational – Technical High School in Staten Island – one of my colleagues died of kidney failure.  Rumor had it that the asbestos in the building was the cause.  I hadn’t been diagnosed yet and didn’t really understand any of this.  Now I can understand the possible origin of the rumor, but the result is the same:  we lost a wonderful person, Ms. Alice Schmedes.

Let’s get a bit more on the positive side here.  Here’s a blog by Dr. Robert Provenzano from Accountable Kidney Care Collaborative that resulted from the Wall Street Journal Article.

Educating Patients Means Empowering Patients

The Wall Street Journal recently published an article about patients doing more to control chronic conditions. After finishing the article, my immediate thought was I’d like to see more patients like author Gail Rae-Garwood, who is profiled in the article, feel empowered to take charge of their health. Undoubtedly, patients need to muster a great deal of courage to step up and take the lead in managing their chronic kidney disease. And education is the best way for physicians to facilitate that kind of courage.

Educated patients make better clinical choices and are better prepared when treatment is necessary. This is a well-known fact, yet many patients need reinforcement to better understand how to live a longer, healthier, happier life—and that reinforcement can come from you, one of their most trusted resources.

DaVita’s Kidney Smart® program is a great resource for your patients. Through instructor-led classes, Kidney Smart gives people with chronic kidney disease (CKD) who have not yet started dialysis the information they need to make healthy choices and slow the progression of their disease—all at no cost to them. Encourage your patients to enroll in a no-cost Kidney Smart class today.

You can also refer your patients to communities like myDaVita.com. This 133,000-member online community helps CKD patients understand and manage their kidney disease, featuring more than 1,000 kidney-friendly recipes, forum discussions, group support and more.Provenazo

Together, we can be a valuable front-line resource for people living with CKD.

Take a moment to read more of the Wall Street Journal article on patients’ role in managing chronic conditions, and figure out the best way you can support your patients.

An open message to Dr. Provenzano, the Accountable Kidney Care Collaborative, my readers, any member of the medical field, and those who know and love people with CKD:

I invite you to contact me at ckded@cox.net to bring SlowItDown to any and all communities that need it.Kidney Book Cover

Until next week (when I’ll be 67!),

Keep living your life!

Book It!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Keep living your life!

‘Twas The Night Before The Night Before Christmas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next year,

Keep living your life!

Bronchitis and Bone Fusions on Veterans’ Day

July 4thIt’s Veterans’ Day.  I’ve been perusing Facebook all day and seeing all the Happy Veterans’ Day posts.  I seem to be having trouble with the happy part.  Why just on Veterans’ Day?  I couldn’t quite figure this one out.

Then I saw how veterans could be happy every day.  Our lovely friend and neighbor Amy (she who brings the milk and cookies when a feverish Bear wants them and a recuperating Gail can’t go to the store) Vlasity wished Bear a Happy Veterans’ Day.  This was his response:GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBk

“I always get a warm glow in my heart when family, friends, and total strangers acknowledge my 25+ years of combined reserve and active duty military service. Knowing that my service assured Olivia’s, Willie’s, Adam’s, and their generation’s opportunities for schooling, choice of worship, and pursuit of happiness gives me great satisfaction of my career’s journey from stateside, Panama, Vietnam, Korea, Europe, and elsewhere. The next generations carry on our American Traditions and I proudly salute these young people for their commitment, time, and hard work!”

Any questions about why I married the man?

The bone fusion part of the title is Bear’s.  The stitches from the three of those and the tendon repair come out tomorrow.  Meanwhile, he is still in a non-weight bearing cast from toes to knee that permits him very little mobility.  He has a wonderful little knee scooter, but is hampered using that due to the leg bone injuries he sustained in a fall we suspect was caused by the eroded joints in his foot about six weeks ago.  He even tried a wheelchair, but cannot elevate his leg high enough in one of those.Bear's foot

The result?  An already over-extended Gail with her Chronic Kidney Disease impaired immune system developed bronchitis… again.  I noticed I’ve not blogged about this.  It’s time.  By the way, I’ve also irrationally wondered if I keep getting sick so I’ll have something to blog about.  That’s ridiculous.  (Isn’t it?)

I went directly to the Mayo Clinic at http://www.mayoclinic.com/health/bronchitis/DS00031 for a definition of bronchitis.

“Bronchitis is an inflammation of the lining of your bronchial tubes, which carry air to and from your lungs. Bronchitis may be either acute or chronic.

Often developing from a cold or other respiratory infection, acute bronchitis is very common. Chronic bronchitis, a more serious condition, is a constant irritation or inflammation of the lining of the bronchial tubes, often due to smoking.

Acute bronchitis usually improves within a few days without lasting effects, although you may continue to cough for weeks. However, if you have repeated bouts of bronchitis, you may have chronic bronchitis, which requires medical attention. Chronic bronchitis is one of the conditions included in chronic obstructive pulmonary disease (COPD).

Treatment for bronchitis focuses on relieving your symptoms and easing your breathing. “

That scared me.  I did have bronchitis about six months ago, too, and both this time and last it hit hard.  Yet I know that chronic is considered constant for at least three months and means “long lasting, the opposite of acute.”  Maybe this is just a case of two unrelated bouts of acute bronchitis.  I did have a head cold just before the bronchitis. In lieu of an image, I’m including a link to MedicineNet.com’s slide show on bronchitis: http://www.medicinenet.com/bronchitis_pictures_slideshow/article.htm. I found it more informative than a single picture could be.

Alright then, if this is acute, or “extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic,” why am I still having trouble breathing after three days?  By the way, both of these definitions are from the glossary in What Is It and How Did I Get It? Chronic Kidney Disease. I’m glad I have a follow up appointment with my family doctor on Wednesday, although I would have preferred one today.

WebMD at http://www.webmd.com/lung/understanding-bronchitis-symptoms tells us:

The symptoms of acute bronchitis may include:

  • Hacking cough that persists for 5 days or more
  • Clear, yellow, white, or green phlegmflu
  • Absence of fever, although a low grade fever may occasionally be present
  • Soreness in the chest

Okay, the disgusting green phlegm thing was there and the sore chest, but basically, I was having so much trouble breathing that I couldn’t speak.  This was not the scary asthmatic kind of couldn’t catch my breath, but rather a having to work very hard to breathe.

So what brought me to the emergency room? My PCP (Primary Care Physician) is not in on the weekends and the Urgent Care Centers out here in Arizona made it clear they couldn’t treat me because, as a CKD patient, I would need blood tests before any work could be done one me.

Although, they ignored the blood tests at the emergency room long enough to give me a breathing treatment for which I am eternally grateful.  I was still feeling miserable after it, but I could breathe a bit more easily. Ms.-I-Don’t-Want-Medication did not even fight the need to use a nebulizer while I recovered.  Let’s just say I saw the value of breathing.

I’m also on an antibiotic since the cause (in my case) was deemed most likely bacterial and I do have CKD.  Although the attending doctor said something odd, “Your creatinine is 1.2.  We don’t even consider that CKD.”  Why not?  It’s stage three.

I’ve heard this before.  Apparently it goes back to that controversy about not diagnosing patients until they’re end stage so they aren’t living a label. Just in case you’re interested, I think that’s nonsense.  If I’d been diagnosed earlier, maybe I could have maintained at stage 1 or 2, as I am at stage 3.

Whoops!  Almost forgot.  I also had a lung x-ray to rule out pneumonia… which it did.

Book CoverMore news about this Kindle Match book deal: if you EVER bought a print copy of the book from Amazon.com, you are eligible to order the digital copy for $2.99.  Many, many thanks to Amazon for their zest in finding new ways to make sure the information about Chronic Kidney Disease you need or want to share with others is more and more available to  you.

While I’m thanking, I don’t know where to start with our children so I’ll just jump in.  Yesterday, Nima walked in The NYC Kidney Walk in my honor.  This weekend, Abby was in the emergency room with me and picked up both Bear and my medications, as well as did our marketing.  Lara and her love are very often here doing whatever needs to be done and lifting our spirits.  Sean runs, takes, does making sure there’s time for what we need between his jobs. Now I ask you, can any mother, step-mother, almost mother-in-law be luckier?

Until next week,

Keep living your life!

Father’s Day Equality Questions

Here’s hoping your Father’s Day was as much fun as ours was. By the way, Bear  – being the manly man he is – started the day by vacuuming.  I was impressed.

We were lucky enough to have almost all our children here except for Nima, who lives in New York.  We missed you, sweetie.  As it was, Abby had to leave early since she teaches blues dancing on Sunday nights and Sean had to come late due to work.  blues

I’d suggested we make this a day for all the foods Bear doesn’t eat anymore because they’re not on my renal diet.  He is wonderfully supportive of me, you know.

His requests: beer brats (I got to soak them!), potato salad (thank you, Kelly) , beer to drink (we’re such big drinkers that almost the entire case of beer bought for the wedding guests and left over is still sitting in the pantry), a dessert from Bear’s family called (I am not making this up) You’re-lucky-if-there’s-any-left made by Lara and root beer floats. Thanks for the makings for that and the tortilla chips I forget to get, Abby.

I just had to stick my two cents in by adding guacamole and chips, and fresh cherries. Since I couldn’t eat most of this food and Abby doesn’t like most of this, I also made turkey spaghetti sauce and angel hair spaghetti for us.

To our delight, everyone still here after dinner agreed they wanted to watch the movie Bear chose, “Red,” despite the fact that it was targeted to the over 50s.  I would not change my combined family of adult children for any other family in the world.

grillOne step-daughter’s boyfriend did the grilling for us while the other changed our air conditioner filter. Why would anyone build a house with these filters on a ten foot ceiling? That’s when I started to notice the differences between the men and the women.

We women did not do any of the outside or maintenance jobs, although the men jumped right in to help with the cooking and clean up. Our guys are good ones and have accepted that there is no such thing as women’s work and men’s work, but have we women? And what does that have to do with Chronic Kidney Disease anyway?

Funny you should ask because I actually have an answer.  In an abortive attempt to clean off my desk this morning, I came across the March issue of Neprology News & Issues that I’d picked up at the last renal conference I attended. Being a firm believer in multi-tasking – after all, I was doing the laundry and overseeing the yard maintenance at the same time I was cleaning my desk – I decided to flip through it while I waited for a call from The National Institute of Health.

Right there on page 20, I found the following sentence, “However, both sexes experienced increased risks of all-cause mortality, cardiovascular mortality and ESRD with  lower estimated glomerular filtration rate and higher albuminuria.”

Let’s backtrack a little. Mortality deals with death, cardiovascular mortality with death from diseases of the heart and blood vessels including those in the kidneys, ESRD is End Stage Renal Disease, glomerular filtration rate and albuminuria are used to judge the degree of kidney function decrease.

There was only one thing wrong with this statement of equality as I saw it.  What did that “However” deal with?  I looked further back in the paragraph and found that a study had been preformed at the Johns Hopkins Bloomberg School of Public Health and the Chronic kidney Disease Prognosis Consortium which found that “… the overall risks of all-cause mortality were higher in men at all levels of kidney function.” Oh, I was confused!

I finally figured out that men were at higher risk of any medical cause of death whether they had kidney disease or not, while women had heightened mortality only if they had kidney disease. So, men and women aren’t equal?cardiovascular

My research sensors started tingling. What else was different about men and women with Chronic Kidney Disease?

According to a study published in US National Library of MedicineNational Institutes of Health at http://www.ncbi.nlm.nih.gov/pubmed/9641172, “This exploratory analysis of the MDRD study indicates a slower mean GFR decline in women as compared with men. The slower mean GFR decline and suggestive evidence of a lesser beneficial effect of the low protein diet and low blood pressure interventions in women suggest that gender differences should be considered in trials of the effects of these interventions on the progression of renal disease.” This is an older study (1998) and deals with gender differences in trials.  MDRD means modification of diet in renal disease. So, the study deals with whatever gender differences are associated with adhering to the renal diet.

The 2007 article Prevalence of chronic kidney disease in population-based studies: Systematic review by Qiu-Li Zhang* and Dietrich Rothenbacher which appears at http://www.biomedcentral.com/1471-2458/8/117, concludes with the following sentence: “Accurately detecting CKD in special groups remains inadequate, particularly among elderly persons, females or other ethnic groups such as Asians.”bmp

So first, it is suggested that women be included in CKD trials; then we’re told it’s difficult to get information about women with CKD.

Aha!  An article about a current study from the same Johns Hopkins Bloomberg School of Public Health and the Chronic Kidney Disease Prognosis Consortium (CKD-PC) mentioned above is posted at http://www.sciencedaily.com/releases/2013/01/130130132417.htm. It establishes that men and women are equal as far as Chronic Kidney Disease, ” ‘Our results contrast with some previous studies suggesting that the association of estimated glomerular filtration rate with mortality is weaker in women. We found the association between chronic kidney disease and mortality risk to be as strong in women as in men. Low estimated glomerular filtration rate or albuminuria should be considered at least as potent a risk factor in women as it is in men,’ said Josef Coresh, MD, PhD, MHS, the Consortium’s principal investigator and professor in the Bloomberg School’s Department of Epidemiology. ”

On another note, Dr. A. Narva of the National Institutes of Health gave me some really good news today.  Although they’re not necessarily advertised off the reservations, most reservations have CKD education programs included in their diabetes programs. I know I’m not responsible for getting CKD education on the reservations, but I definitely felt a sense of relief knowing that the information is available there.  I will continue to hunt for the few reservations without the information available and thank Dr. Narva for the referrals he offered me.Book Cover

As for the book, I think I’ve lost track of sales.  They seem to be constant and holding their own.  Do I urge you to buy a copy for someone who is newly diagnosed? Absolutely.  Remember: digital and print versions are available at Amazon.com and B&N.com.  If you’d like a signed copy, contact me at myckdexperience@gmail.com. Should you know someone who needs it but can’t afford it, please forward his/her information to me.  The same for practices that need a copy.

Until next week,

Keep living your life!

Guilty Pleasures

I read this phrase somewhere and that’s what today blog is: my guilty pleasure.  It’s my pleasure because my mission is to keep informing about Chronic Kidney Disease and it’s my guilt because I indulge myself in using my own life experiences to ease into this information.

downloadI did promise to write about our wedding reception today.  The first thing that comes to mind is music, lots of it.  Abby Wegerski, Nima Rosensfit (my biological daughters) and Michelle Davis (Cheryl’s daughter and my daughters’ cousin) – all professional singers at one time or another – regaled us with “Going To The Chapel of Love.”  My Arizona buddy, Karla Lodge (another professional singer) blew us away with her own solo.

I don’t know how it happened, but I sang “Hava Nagila,” in a full, clear voice.  That’s odd because I gave up singing since I could no longer stay on key and my voice had become thin and reedy.  It certainly wasn’t that way at our wedding.

One of our guests was Robert Arthur who I met when he was a student in one of the writing classes I taught at Phoenix College almost a decade ago.  We played his original album during the reception when no one was singing.GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBk

People who didn’t know each other started to interact and I loved it.  At one point, I noticed our best man – Michael Payne – in a tuxedo having a discussion with an unshaven young man wearing worn jeans and an ill-fitting shirt.  The dichotomy tickled me.

Karla, my Staten Island buddy Janet Le, and Michelle, who I still think of as my niece (despite no blood relationship) handled all the kitchen duties so I could just “be the bride.”  Michael made a beautiful toast. So much happened, but it reminds me of child birth; I don’t remember very much of it!download (1)

So let’s get to the heart of today’s blog: pregnancy when you have Chronic Kidney Disease (like the way I slid into that?).  According to the physicians’ journal BMJ,

“Pregnant women with chronic renal [kidney] disease adapt poorly to a gestational [pregnancy] increase in renal blood flow. This may accelerate their decline in renal function and lead to a poor pregnancy outcome.”

That blatantly gives you the bad news first, but it’s not the end of any thought of pregnancy with CKD. You can read the fairly technical, yet highly informative article at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2213870

The following is a 1980 view of pregnancy’s effect on kidney disease.  Keep that date in mind since it is 33 years ago:

  • Increase in proteinuria [protein in the urine]
  • risk of preeclampsia [hypertension (a sharp rise in blood pressure), albuminuria (leakage of large amounts of the protein albumin into the urine) and edema (swelling) of the hands, feet, and face]
  • worsening of anemia [low red blood cell level]
  • lessening of renal function.

While I’ve paraphrased, it’s clear pregnancy with ckd was frowned upon all those years ago.  The study I found the information in can be located at this address: http://webdoc.nyumc.org/nyumc/files/med_nephrology/attachments/Pregnancy%20and%20CKD.pdf

Okay, lots of definition in the above outdated article.  Let’s see what thoughts about the subject are fairly current.

Pregnancy and Chronic Kidney Disease: A Challenge in All CKD Stages. That’s the title of an article I found at: http://cjasn.asnjournals.org/content/5/5/844.full.  The word ‘challenge’ caught my eye, so I did my best to understand the article which summarized information garnered between 2000 and 2009 about the subject.  According to the article, more cases of CKD were discovered during pregnancy than had been expected.  Of course, I immediately wondered if this were a new way of diagnosing CKD.  Of course, I knew I could not be tested this way.  Of course, you know I’m kidding.

baby-shots-5“Chronic kidney disease complicates an increasing number of pregnancies, and at least 4% of childbearing-aged women are afflicted by this condition. Although diabetic nephropathy [kidney disease from long term diabetes] is the most common type of chronic kidney disease found in pregnant women, a variety of other primary and systemic kidney diseases also commonly occur. In the setting of mild maternal primary chronic kidney disease (serum creatinine <1.3 mg/dL) without poorly controlled hypertension, most pregnancies result in live births and maternal kidney function is unaffected. In cases of more moderate and severe maternal primary chronic kidney disease, the incidence of fetal prematurity, low birth weight, and death increase substantially, and the risk of accelerated irreversible decline in maternal kidney function, proteinuria, and hypertensive complications rise dramatically. In addition to kidney function, maternal hypertension and proteinuria portend negative outcomes and are important factors to consider when risk stratifying for fetal and maternal complications. In the setting of diabetic nephropathy and lupus nephropathy [kidney inflammation caused by lupus], other systemic disease features such as disease activity, the presence of antiphospholipid antibodies [antibodies that might be in your blood and might increase the incidence of blood clotting and pregnancy termination], and glycemic control [eating low carbohydrate foods to help manage diabetes] play important roles in determining pregnancy outcomes. Concomitant with advances in obstetrical management and kidney disease treatments, it appears that the historically dismal maternal and fetal outcomes have greatly improved.”

The above is taken from Chronic Kidney Disease and Pregnancy: Maternal and Fetal Outcomes by Michael J. Fischer at: http://www.sciencedirect.com/science/article/pii/S1548559507000055, which is dated April 2007.  I included the entire paragraph since it makes so clear that pregnancy outcomes “have greatly improved.” And that was six years ago! By the way, I added the definitions in brackets.

I seem to be having trouble finding anything more recent, so I’ll summarize what I have found:

  1. Speak with your nephrologist about a high risk team before you become pregnant, if possible.
  2. Pregnancy in early stages of CKD has better outcomes.
  3. CKD may be discovered during pregnancy.
  4. Pregnancy is not an impossibility if you have CKD.kidneys5
  5. Treatment in pregnancy in CKD is continually improving.
  6. The risks are caused by increased renal blood flow along with other factors.

Considering my age, I’ll take my mother’s advice: “Better you than me.”  Don’t let CKD cause you to miss out on one of the wonders of life, but don’t be foolish.  Take care of that baby you intend to bring into the world by taking care of its mother.  Reminder:  giving birth to a baby is not the only way to become a mother.

Until next week,

Keep living your life!

None of This Matters

Household tips I have learned via prepping the house for the wedding:                                                                 IMAG0208

1. Contact paper works well on bathroom windows for privacy.
2. Adhesive white board paper makes a good privacy screen on the shower door.
3. Trees and bushes cut back due to frost damage do grow back quickly.
4. Things break at the absolutely worst time: dishwasher, solar water heating panel, a/c.
5. None of this matters.

The most important one is #5.  We are preparing for one of the most special days for us – our wedding – and we’ll be married whether we discovered these things or not.

But I may not have been here for my wedding day if my Chronic Kidney Disease had not been discovered.  Once it was, I was given the tools to retard its progression and seemingly reverse it at times.

An even earlier discovery of my ckd would probably have been better. Okay, so I was seeing a Physician’s Assistant who wasn’t all that astute.  The readings were right there in my blood tests almost a year before I changed to a primary care doctor who actually cared.  I really liked the P.A. who had been taking care of me, but learned that liking a person doesn’t necessarily mean she is a good medical practitioner.

There are so many ifs here: If I had known earlier, could I have made sure my eGFR (estimated Glomerular Filtration Rate) didn’t dip as low as it was when I was finally diagnosed? If I had been seeing a doctor rather than a P.A. would she have caught the ckd earlier?  If the blood tests had been read carefully, would I have had the opportunity to get to work on preventing rapid progression in the decline of my kidneys?glomerulus

I will never know the answers to those questions, so – as #5 says – none of this matters … for me.  For you?  That’s another story.

Have you ever heard of KEEP?  That’s the Kidney Early Evaluation Program.  Notice the word ‘Early’ in the title. With ckd, the earlier you can detect the disease, the better. According to the National Kidney Foundation:

                            The goals of KEEP are to:

  • Raise awareness about kidney disease especially among “high risk” individuals
  • Provide free testing for people at increased risk for kidney disease
  • Encourage people “at risk” to visit a clinician and follow the treatment plan recommended
  • Provide educational information so that “at risk” individuals can prevent or delay kidney damage
  • Provide  clinician referrals for follow-up care, if needed
  • Provide ongoing information and support

You can read more about the program at: http://www.kidney.org/news/keep/KEEPabout.cfm

The KEEP Program is for all people, but the ‘high risk’ ones are the ones that may need to take immediate action.  What is ‘high risk’ you ask?

According to The National Kidney Center at: http://www.nationalkidneycenter.org/chronic-kidney-disease/risk-factors/  these are the high risk people:

“High risk groups for chronic kidney disease (CKD) include those with diabetes, hypertension and a family history of kidney disease. African Americans, Hispanics, Pacific Islanders, Native Americans and Seniors are also at increased risk.”

That definition covers quite a bit of ground.  For example, I have hypertension (high blood pressure) and am a Senior (Thank you for the capital letter, National Kidney Center!).  I don’t know if there’s any history of kidney disease in my family since the cousins my age don’t know of any, but our parents would never discuss their health with us.

Alright, so we need early detection.  Now, where can you find that?  On the home page of The National Kidney Foundation, there is an orange bar running across the page.  It has different pages on it. Hit the one that reads “Events.” Once you get to that page, scroll down and you’ll see the words, “Find a KEEP Screening Near You.”  Hit it. Voila!  You’ve found your local KEEP Screening.

The logical question here is, “What if there isn’t one near me?”  You don’t have to travel across state lines to find out if you have CKD.  Speak with your pcp (primary care doctor) and ask him or her to run a blood test and a urine test. While the results may not be crystal clear to a doctor who is not a nephrologist (kidney and hypertension specialist), high or low readings will be marked.  They will let your pcp know there may be a kidney function problem.bmp

The National Kidney Disease Education Program at The U.S. Department of Health and Human Services at http://www.nkdep.nih.gov/resources/kidney-disease-mean-for-me.shtml#results provides the following information and a really nifty diagram of reduced function kidneys for you:

1. A blood test checks your GFR, which tells how well your kidneys are filtering. GFR stands for glomerular filtration rate.

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

kidney function

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

Blood:

BUN –

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.

Creatinine

Creatinine is a breakdown product of creatine, which is an important part of muscle

Urine:

Creatinine clearance

The creatinine clearance test compares the level of creatinine in urine with the creatinine level in the blood. Creatinine is a breakdown product of creatine, which is an important part of muscle.

Thank you to MedLine Plus, part of the U.S. National Library of Medicine,  National Institutes of Health at http://www.nlm.nih.gov/medlineplus/ency/article/003475.htm for the above information about the blood and urine tests.

Well if this blog isn’t enough to get you to check your kidney function, I just don’t know what is.The Table

Before I leave, European sales of the book are surpassing those of U.S. sales.  I don’t know if that means we have more access to specialists and information here or that Europeans are reading more. Do let me know if there is a practice that needs a book donated to it or needs books to use as prizes or give-aways at patient education sessions.

I’m forgetting the world outside of wedding prep and CKD!  Guten Pesach to those who celebrate Passover, which started last night, and a Happy Easter to those who will be celebrating that on Sunday.

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!

Better And Better

Here I am in beautiful downtown Portland,Oregon.   All I’ve seen of it so far is the highway since  I’ve been attending the Landmark Advanced Course downtown and I’m staying near the airport way out of town, but the trees lining the highway are beautiful… and green.  Not so green as to hurt the eyes, but green where I’m used to brown.  I live in a desert and I love it. It’s become the way it is for me, my norm.            

(Diagram courtesy of The National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health)

Just as the estimated glomerular filtration rate has become the norm for evaluating the presence of – and stage of – Chronic Kidney Disease.  You take a blood test and you catch your urine for 24 hours, right?  Then it’s tested. Here’s where the change may happen.  Currently, only the creatinine is evaluated -not the creatinine and cystatin-c.

The what, you say?  Good question and one I had to research myself. According to medterms.com, “It is a serum protein that is filtered out of the blood by the kidneys and that serves as a measure of kidney function.” A National Institute of Health study found that testing both creatinine and cystatin-c is more accurate which could prevent over diagnosing CKD and, more importantly to me, missing the CKD.

The article can be found at: http://www.nih.gov/news/health/jul2012/niddk-05.htm

By the way, I found some interesting articles about this dated as far back as five years ago.  I’m wondering why our nephrologists have not yet changed the tests they request to test for CKD.

If you haven’t heard yet, Kidneysteps.com ran a piece on me which mentions both the book and this blog. Thanks to Vicki Hulett for that. You’ll notice that the site has been added to the blogroll.

What’s that sound? Of course, it’s Portland’s Pink Trolley calling my name. *sigh* And just as my trusty old laptop seems to be breathing its last, too.

Until next week,

Keep living your life!

Just When We Thought We Understood

I don’t want to have Chronic Kidney Disease.  I have no emotional need to be a patient. But when I read the following blog by England’s Dr. Dan Brett yesterday, all I kept thinking is, “I don’t want to be that part of that 1%.” If only there were a way to predict who would be, I’d have to agree with him.  BUT there isn’t, so I don’t (although I did find his thoughts comforting).

                Offal treatment

                                           Primary Care Blues
                   Dan Brett

21 July 2011

DanBrettblog21july2011.jpgPrior  to 2006, a gentle upward drift in creatinine, as patients grew older,
was considered to be a part of natural ageing. It wasn’t as if my
patients were regularly popping their clogs due to end stage renal
failure, leaving me berating myself for not checking their eGFR or urine
protein / creatinine ratio. Notes might have been annotated with a
‘mild renal impairment’ code by the most diligent of us, but kidneys, on
the whole, were strictly foodstuff or organs for connoisseurs and
specialists.

Then ‘chronic kidney disease’, with all it’s [sic] stages, was invented – and added to QoF [e.g. I had to look that one up: Quality and Outcomes Framework]. With money attached, it immediately became ‘important’. Literally hundreds of unsuspecting, asymptomatic patients – mainly elderly, have been dragged in to be given their bad news – cluttering up my waiting room, having umpteen blood tests and urine tests.

Doctor: “You’ve got stage 3 Chronic Kidney Disease, Mrs Miggins, requiring that we mount an immediate renin-angiotensin blockade, get you on a statin…”

Mrs Miggins: “Oh dear – stage 3 already you say! How long have I got…?”

Patients have been scared witless – terrified that a transplant / dialysis /
imminent death awaits them. [Me again. This is exactly why I wrote the book.] Renal referrals have rocketed and what exactly has been achieved? After four years of industrious GP QoFing, where is the evidence that managing chronic kidney disease is of benefit? According to published studies, only 1% of patients with the stage 3 chronic kidney disease label will progress to end stage renal failure in the next eight years. With these small percentages we need to treat thousands of patients each year to potentially make any difference at all! But doesn’t managing chronic kidney disease reduce deaths from ischaemic heart disease, I hear you say? Nope – kidding
yourself again – evidence is distinctly lacking.

Hoerr’s Law rightly asserts that – ‘It is difficult to make an asymptomatic patient feel better.’

Or put another way, in the words of our godfather – Hippocrates – ‘To do nothing is also a good remedy’.

Here’s the URL for the blog: http://www.onmedica.com/BlogView.aspx?blogid=a9b19411-c226-42aa-bec3-6304dfa3616c&postid=d3de890d-dcd8-4bbc-b681-90c149300609

I have no intention of stopping my treatment, but whenever that panic starts to creep into my heart, I’ll have this blog to quell it immediately.  I’m pretty good about being rational concerning my Chronic Kidney Disease but I’m also human and those what-ifs can make the teeniest little bit of headway when I’m feeling low. Maybe you can use it, too.

Have a terrific weekend and

keep living your life! P.S. Please like our What Is It And How Did I Get It? Early Stage Chronic Kidney Disease page on Facebook, so we can keep spreading the word.

Published in: on July 22, 2011 at 9:43 am  Leave a Comment  

The 24 Hour Urine Collection Revisited

I’ve just realized I’m a tweaker.  Let me explain:  I’m not a druggie, but rather someone who tries to finesse instructions in the way that best suits her.  I know, I know.  You’re asking yourself, “What is she talking about?”  You see the title of today’s blog and already know it’s 24 hour urine collection day for me. I woke up at 6:30 today after desperately trying to stay asleep and out of the bathroom until a more reasonable hour – say 7:30 – because I know I’ll have to get up a little bit earlier than I did today to complete the 24 hour urine collection tomorrow.  It IS a 24 hour test, after all.  I just wanted to sleep a little later and didn’t realize I could just start the collection period a little later until I read the 9/5/09 blog of Carolyn Cooper, MPH, RN at: http://promotinghealthandpatienteducation.blogspot.com/2009/09/24-hour-urine-collection-how-to-do-it.html

This is the most complete explanation and set of instructions I’ve uncovered since I first began exploring this test and how to do it.  If you remember (and even if you don’t), I’ve mentioned that sometimes the instructions your lab or doctor’s office give you are simply not clear or thorough. I think we can thank Ms. Cooper for taking care of that problem for us.

24 Hour Urine Collection: How to do it and Why it’s done

What’s the Purpose of Urine Testing?
An incredible amount of information can be obtained from examining a urine sample. In fact, over 100 different tests can be performed on a single specimen.Most of the time a simple “quick catch” specimen of urine (voided into a cup) is sufficient for a basic urine test. Urinalysis results may reveal problems with the body’s electrolytes or hormones, the presence of infection, dehydration, evidence of microscopic blood (that can’t be seen with the naked eye), drug levels, or problems with kidney function.Why a 24-Hour Urine Collection?
A small sample of urine isn’t always sufficient. In addition to blood tests, physicians will order a 24-hour urine collection if they have reason to be concerned about overall kidney function. This test typically focuses on creatinine clearance, sodium, protein, and urine osmolality. Other substances may be examined in a 24-hour collection; for example, hormone levels, urea nitrogen, or copper. The volume of urine that is voided during the 24-hour period also yields important information.  The laboratory will make calculations based on your 24-hour (or 12-hour) urine collection that will help determine how well your body is clearing waste products via the urine.  This finding will be compared to a blood test that measures how much of the waste products are circulating in your blood.

If your physician hasn’t explained WHY he or she is requesting the 24-hour urine collection, ask for details. As a patient, being informed is one of your fundamental rights

 
Tips for Collecting Your 24-Hour Urine Specimen
A 24-hour urine collection is easy to mess up, and that can be very frustrating. Just one moment of accidentally forgetting to collect and save the urine during the 24-hours ruins the test, and the collection might have to start all over again . . .

Before the test: Your doctor’s office will provide you with one or two brown plastic collection jugs and written instructions. Certain tests may require that urine be placed in a “double container” or that a preservative be added to the collected urine; you’ll be given the supplies and containers appropriate for your test.What you need from your lab or doctor’s office:

  • Special instructions for the test and a lab sticker with your patient information to attach to the collection container(s).
  • Collection container(s)–depending on the size of container the lab stocks–you may receive one or two of these jugs. They are made of heavy brown plastic, not just any container will do for this collection, so be sure to use the container(s) provided.
  • Nice to have items–I’d ask for these if they don’t offer them to you. For men: A plastic urinal to void into. For women: a plastic “nun’s hat” to set in the toilet to collect the voided urine. If you don’t have these items, it’s okay to void into a bedpan, large plastic cup or bowl, etc. You will pour the collected urine into the brown collection container after each void, so it’s nice to have something that pours easily.
  • You’ll also need:a way to keep the collected urine cool during the collection period. One of the most common ways to do this is to set the brown urine collection jug in larger container filled with icy water (an ice bath). An ice chest (cooler) is another option. It’s also possible to place the collection jug in the refrigerator, although there are many reasons to make this impractical.
When to begin?
 Find out in advance when and where to return your 24-hour urine collection. This information will help you decide when to begin, because if the lab or physician’s office isn’t going to be open when you finish the collection, you’ll have to keep the sample in a refrigerator, cooler, or in an ice bath until you can turn in your specimen. It’s often suggested that you begin a 24-hour collection first thing in the morning–but that is certainly not required. However, it is essentialthat you make note of the date and time that the specimen collection was started and stopped. This information will need to be recorded on the specimen container (and/or label).Ready to start?

Completely empty your bladder by voiding into the toilet and flushing–DO NOT save this first urine sample. The first time you empty your bladder you are flushing away urine that has been building up in your bladder for several hours or more.  That hours-old urine will yield incorrect results if we collect it for our 24-hour specimen.  We want to start with an empty bladder to collect only the urine our body makes during the 24-hour-period. Record the start time and determine your stop time. 

All other urine during the 24-hours will need to be saved and poured into the collection jug. It’s helpful to use the same bathroom all day long and post a note with the start/stop time to help remind you to collect all of your samples. Replenish the ice in the basin surrounding your collection jug from time-to-time in order to keep the specimen cool.Ending the collection:

  • When the 24-hour-collection period is ending, make a last effort to urinate–even if you don’t have the urge to “go,” you will still be able to produce an ounce or two of urine. Make sure your collecton jugs are tightly capped and labelled with your name, date of birth, collection date and start/stop times.   (Note: If you weren’t given a label for your specimen jug, make oneand tape it securely to your jug.) Keep the specimen in the ice bath, cooler, or refrigerator until you are ready to return it to the lab or doctor’s office. Place your specimen jug(s) in a sturdy plastic bag for easy carrying. (Your specimen will be just fine without being on ice while you return it to the lab or doctor’s office—as long as you are not exposing it to heat for a prolonged period of time.)What If . . . ? Special circumstances .                                                                                                                 
    You filled up the container the lab provided, but your 24-hour-collection is not yet complete.Use a very clean glass or plastic container to continue collecting your urine.  Your brown jug protects the collected urine from light–so if you have to use a transparent collection bottle, be sure to guard it from the light along with keeping it chilled. Using an ice chest would be a good strategy for you in this case–if that’s not possible, cover the transparent container with a brown paper bag to protect it from the light.  When you return your sample to the lab, keep the transparent container in a brown paper bag, or some similar technique to keep it protected from the light.
  • You have started the 24-hour-collection, but find you need to leave the house for several hours.  Take a backpack with you, a plastic bottle with a secure lid, and a large ziplock bag full of ice.  This will allow you to carry your collection items discreetly.  For ladies, a wide mouthed plastic container will allow you to urinate and pour the sample into your capped bottle.  Your ziplock bag of ice will help keep your sample cool while you are on the go. I know this is a rather bulky idea, but the best I can come up with at the moment.
  • For patients with urinary catheters. It would be preferable to start your collection with a fresh catheter bag in place–if that’s not possible, it would be nice to clean the existing bag–at least remove the bag from the catheter and give it a good rinse out.. Begin your collection by completely emptying the current catheter bag and flushing the accumulated urine.Record this as your start time. During the remainder of the 24-hour-collection period, empty the foley bag into the brown collection jugs at regular intervals and keep the collection jugs in the refrigerator on in an ice bath just as anyone else would do. At the designated stop time, empty your collection bag for the last time.
  • Urine becomes mixed with feces or blood. Do not empty any urine that has been contaminated by feces or menstrual blood into your collection jug. Make note of the time and stop the collection. Contact your lab or physician’s office to inform them. In some cases, if enough time has elapsed (12 hours or more), your physician may give the go-ahead to stop the test early. Possibly, you may be asked to start all over again.
  • Patients who are incontinent (cannot hold their urine).  Certainly your physician may not realize (or remember) that a particular patient struggles with complete or partial incontinence.  Do let your doctor know about incontinence issues.  Perhaps the 24-hour-test will be impossible because of complete incontinence; perhaps they might recommend a bladder catheter for the test, or perhaps they might allow a shorter period of time (12-hours or thereabouts) for the urine collection. 
  • “Oops! I didn’t collect every void during the 24 hours!” If you forget to collect all of your urine, the test results may be inaccurate. Talk to your lab or doctor’s office before disposing of all that you’ve collected. If you have already completed at least 12 hours of the urine collection, mark down the time of the last urination and keep your container on ice or in the refrigerator as discussed later in this article.  Talk to your physcian’s office or lab to let them know what you have been able to collect.  They should be able to use your sample and calculate the important information based on the number of hours you have collected–but it’s important that they know the correct number of hours when you turn in the sample.  It’s possible that you’ll be asked to start all over again, but there’s a good chance that they can use what you’ve collected and make adjustments to correctly calculate the results.
  • Why keep the urine specimen on ice?  The ice bath is just a technique for keeping the urine cool enough so that bacterial growth doesn’t overwhelm your specimen.  The ice bath should keep your specimen in the 40-45 degree Farenheit range as would your refrigerator.  Keeping a 24-hour-specimen in the refrigerator is really awkward and inconvenient.  Having your specimen container right there in the bathroom “on ice” is so much easier.
  • Other questions? Call your physician’s office or lab.

I realize I’d also forgotten the purpose of not collecting that first void of the morning until I read this blog.  There’s something about being reminded of what you know that’s almost as satisfying as learning something new – which is what I hope you’ve done today.

Until Friday,

Keep living your life.

Me Pretending To Be A Dictionary

I’ve used quite a few terms that pop up in the discussion of Chronic Kidney Disease and/or doctor’s reviews or reports in this blog without defining them.  It’s about time that I did just that, so here it goes:

Acanthosis nigricans: A disease that causes velvety, light-brown-to-black markings usually on the neck, under the arms or in the groin.

ACE Inhibitor: A blood pressure medication that lowers protein in the urine if you have CKD.

Acute: Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic. 

Acyanosis:  No blue skin from lack of oxygen.

Albumin:   Water soluble protein in the blood.

Anemia: A blood disease in which the number of healthy red blood cells decreases.

Anicteric sclera: The white of the eye is not jaundiced or yellowed.

Antibiotic:  Medication used to treat infection.

Arteries: Vessels that carry blood from the heart.

Asymptomatic: Without indications of a disease.

Auscultation: Listening to the sounds within your body, usually with a stethoscope.

Benign: Harmless – as in benign rather than malignant [life threatening] tumor.

Bid: From the Latin bis in die meaning twice a day, usually found in the directions for a script.

Bounding: Used to describe your pulse as strong and forceful.

Calcium: The electrolyte responsible for bone and teeth formation and growth, although that is only one of its jobs.

Carbohydrate: Asubstance in food that the body reduces to simple sugars and uses as a major energy source.

CAT scan: multiple x-rays taken by computerized axial tomography which are then combined into one picture of the inside of the body, has the advantage over an x-ray of also being able to show soft tissue damage

CBC:  A complete blood count, a comprehensive blood test.

Certification: Your doctor has taken training in his/her specialty and passed the final exam – the board in board certification – for the course in order to become certified in the particular specialty.

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

Chronic: Long term, the opposite of acute.

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

Circulatory Diseases: Those affecting the circulatory system, basically the heart, blood and blood vessels.

CKD: See Chronic Kidney Disease.

Conjunctiva: The mucous membrane that lines the inner eyelid and the exposed surface of the eyeball.

Claudication: Leg weakness associated with circulatory problems.

Creatinine clearance: Compares the creatinine level in your urine with that in your blood to provide information about your kidney function.

Cyst: An abnormal sac in the body which contains air, fluid or a semi-solid substance.

Dyslipidemia: Abnormal levels of cholesterol, triglyceride or both.

Diuretic:  Usually a drug ingested to increase the output of urine.

Dyspnea: Difficulty breathing.

Dysuria: Difficult or painful urination.

Edema: Swelling caused by fluid retention in the tissues of the body.

Effusion: leaking.

Erythropoietin: Produced by the kidneys to spur red blood cell production.

Fasting: No food or drink for a specified time, usually from after midnight for blood tests.

Fatigue: Lack of energy and motivation, possibly caused by low iron levels.

Gallop: Different sounds in the heart.

Genitourinary:  Dealing with the genital and urinary systems of the body.

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

Glucose: The main sugar found in the blood, in diabetes, the body doesn’t adequately control  natural and ingested sugar.

HBP: The abbreviation for high blood pressure, see hypertension.

Hematuria: Blood in the urine.

Hemoglobin: Transports oxygen in the blood via red blood cells and gives the red blood cells their color.

Hemoptysis: Coughing up blood.

High Blood Pressure:  See hypertension.

This was so much fun (well, I am a writer) that we’ll do it again on Tuesday.  Hang in there, you just might find the one or two terms you need defined in these lists.

Until then,

Keep living your life.

The Stages et al

Here’s hoping everyone had a wonderful Thanksgiving and so much to be thankful for – so much, in fact, that you realized some lower income people in Arizona need their transplants so they can be just as thankful.  And that you’ve contacted Jan Brewer’s office to let her know that transplant is NOT elective surgery. It’s the oppposite of the death sentence she’s imposing on these people by refusing their transplants.

I’m going to jump back to early stage Chronic Kidney Disease now. DaVita has an estimated GFR calculator on its website at: http://www.davita.com/tools/gfr-calculator/#.  However, you will need your serum creatinine reading to use it. There is more information here that I cannot explain than I can since I’m not a medical professional. Basically, you enter your information and then a CKD stage comes up.  Try it if you’re willing to forego understanding the medical terminology.

I decided to trust that my doctor would understand the necessary formula, especially when I saw that mathematical formula, but decided to give the DaVita site calculator a try, too. Sure enough, using the information from my blood test for the creatinine, my information placed me at Stage 3 CKD.  When I lost weight, I was placed at Stage 2. It’s apparent that this may be the calibration system my doctor uses since it takes body weight into account.  There are many other systems that do the same thing. Just looking on the internet will give you an idea of how many and how they differ slightly from each other.

Notice the radio buttons asking if you are Afro-American. Not only are Afro-Americans at higher risk of CKD, but they have higher muscle mass, so the calculation result has to be multiplied by 1.2 for a true reading.  That struck me as odd, not the need to re-calculate, but that you can find a true reading for an estimated value.

In 2002, which is not all that long ago, CKD was divided into five stages by the National Kidney Foundation, dependent upon your GFR results. Serum creatinine is used in this formula as well as age, race and gender.  One of the jobs of the kidneys is to remove this muscle activity waste product from your blood.  The higher the levels of this in your blood, the lower the kidney function.

 Stage 1             90 ml/min or higher            normal or higher
 Stage 2             60-89 ml/min                        mild
 Stage 3            30-59 ml/min                        moderate
                       Stage 4            15-29 ml/min                         severe
                       Stage 5          less than 15 ml/min               end stage

CKD progresses slowly.  Using these divisions, your nephrologist knows how to treat your illness.  Each stage requires different treatment.  I’ll use Stage 2, the stage my tests show, as an example.  Usually, at this stage, there are no symptoms.  I found out I had CKD when I was being tested for liver function.  That’s how most people at this stage will be diagnosed: being tested for some other ailment.  The blood test I took included GFR estimated routinely.  It had never mattered before.  Such a test might show up more urea in the blood or, when the urine is tested, protein or blood in the urine.  Sometimes, a CAT scan, ultrasound, MRI or contrast X-ray may catch kidney damage.

Once diagnosed, you’ve got to continue monitoring the progress of this disease.  I take a blood test and give a random urine sample [that’s the pee in a cup kind] once a year and six months later, another blood test accompanied by a 24 hour urine test and give another random urine sample.  Other than that, at this early stage, I follow the renal diet, try (desperately in my case) to watch my weight including counting calories and exercising daily, whether I want to or not.  I should be trying to ingest the Dietary Reference Intake or DRI for vitamins and minerals, but find I often rely on my daily vitamin to do that.  If I were a smoker, I would have had to stop.  Come to think of it, I was a social smoker, but I think it wouldn’t be fair to tell you how easy it was to quit since I only smoked maybe a pack a month.

I am careful about my blood pressure.  Right now, my nephrologist and I, working as a team, are checking it twice a day.   That means he tells me to take a reading at 10 a.m. and before dinner at 6 p.m. daily with my home blood pressure equipment and I do it.  I found my equipment right in the pharmacy and was surprised that it was both a good brand and not too expensive.  I’ve noticed when I’m ill [UTI, flu, etc.], my blood pressure is higher.  When I’m not, it’s usually within range, which is about 130/85 for me since I have neither diabetes nor proteinuria.  The nephrologist and I are actually watching for low blood pressure since it was too low before my HBP medication was cut in half.

My nephrologist is treating me for one aspect of Stage 3.  It seems I’m not producing enough Vitamin D, so I now take more Vitamin D supplements.  I need this to insure that my bones and teeth remain strong.  But, then again, every time I take a blood test, something in my regime is changed because I’m either overloaded with whatever it is or not producing enough of whatever it is.  My nephew-in-law calls this my balancing act.  He’s right.  It is all about keeping in balance.

I know there’s no cure for CKD, but I’m becoming more and more confidant that I will be able to slow its progress for a long, long time.  Brag time: for the first time since I was diagnosed, all my blood tests came back normal.  The only downside to that is the test was for an infection which did show up in the urinalysis. I’m still in my positive mode, so I’m sure I’ll conquer that, too.

I’ll explain more about the renal diet in a later blog.

I’ll meet you back here on Tuesday once the manic Black Friday, which has now been extended to the whole weekend, is over.

Until then, keep loving your life!

Published in: on November 26, 2010 at 7:02 pm  Leave a Comment  

The Estimated GFR

There’s something I need to tell you: the state of Arizona has decided that transplants (not just kidney transplants) are elective surgery.  There we have our first death panel.  The state health insurance for lower income families has been instructed to deny claims for transplants, even reverse those claims already approved.  This is very, very scarey. I urge you to contact Jan Brewer, Arizona’s state governor, to protest BEFORE this kind of insanity spreads to other states.

Arizona is setting a precedent, one it would behoove us to insist she reverse.  The following link will give you a bit more information: http://ktar.com/?sid=1341224&nid=6.  Brewer’s contact information is at http://azgovernor.gov/Contact.asp.  There’s an e-mail form, a telephone number, a fax number and a snail mail address on that page. As Chronic Kidney Disease – Early Stage patients, we are far away from transplants, but we will need them whether it’s months, years or decades from now.

That’s the other end of our disase.  Now back to the beginning. The symptoms of kidney disease don’t show up until you’ve lost most of your kidney function.  That’s when you’ll experience the fatigue that’s not always a result of anemia, the muscle cramps that usually – but not always – present themselves in your calves, nausea, vomiting, appetite loss, easy bruising, itching and the shortness of breath when you exert yourself.  If you’re like me, you started feeling them as soon as you read about them, but they weren’t really there.  It was a classic case of medical student syndrome. That’s when you are convinced you have the disease (or, in my case, the symptoms) as soon as you learn about it.  Actually, according to my nephrologist, I’m probably at least 20 years away from such symptoms.  So how do the doctors know I have CKD?

It’s all in the numbers, the numbers of your estimated GRF that is. But what is the GRF, and why is it estimated?  Isn’t medicine an exact science? It seems not.

GRF means the Glomerular Filtration Rate.  Big help, isn’t it? Filtration Rate sounds easy enough, but what are (is?) a Glomerular?  The dictionary tells us that filtrate is the part of a liquid that passed through a filter. So, glomerular filtration measures the filtrate from the glomerular.

According to The Gale Encyclopedia of Medicine, a glomerular is a small tuft of blood capillaries in the kidney responsible for filtering out waste products. So far, so good.  Now, how does this relate to CKD?

It is considered the best indication of measuring kidney function when used as part of a formula that includes age, gender, body size, race and serum creatinine level. Creatinine is a waste product of muscle activity. What actually happens is that our bodies use protein to build muscles and repair themselves. This used protein becomes an amino acid which enters the blood and ends up in the liver where it is once again changed.  This time it’s changed into urea which goes through the kidneys into the urine.

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

In Kathryn Seidick’s Or You Can Let Him Go, she quotes her son’s doctor, “The word you will come to love or dread, Mr. and Mrs. Seidick, is creatinine.  This is a substance constantly secreted by muscles, and its presence in the blood shows better than anything how well the kidney is doing.  If the creatinine is low, 0.5 to 1.5, the kidney is doing well; if it is high, the kidney is in trouble.”  This book was published in 1984, but Dr. Gruskin’s words are still apt, although he was referring to a child’s creatinine levels. A mature man’s can be between 0.6 to 1.2, and a mature woman’s between 0.5 and 1.0. It can be even lower for children and, as you age, it lowers even more.  The more websites I visited, the more variable [albeit very slight] I noticed in acceptable ranges for non-CKD creatinine levels.

Once again, I urge you to contact Jan Brewer’s office before our kidneys give out on us.  Thanksgiving is Thursday.  One of the things we can be thankful for is that we don’t need transplants yet, but what about those lower income people in Arizona who do need an organ transplant?  Think about how to phrase your letter to Brewer as you eat your turkey and just keep loving your life – the way these people being denied their transplants love theirs.

Published in: on November 23, 2010 at 4:33 pm  Leave a Comment  

Getting a Little Too Technical

Ah ha!  I’m not totally off the mark.  I have successfully remembered today is Tuesday.  Oh, heck, I might as well tell the truth.  I teach on Tuesdays so it’s easy to remember it’s Tuesday, and only one step from remembering it’s Tuesday to remembering that’s a blog day.  Friday is my challenge, but I’m working on it.

There are many different sections to the nephrologist’s report so I’m going to keep on explaining some more of them for this blog.  We’ll pick up with a list of allergies that didn’t relate to CKD. Perfectly ordinary allergies that anyone could have. It seemed absurd they were even on the same page with the preceding, life changing  information that I now had Chronic Kidney Disease.

Below that, the nephrologist listed Current Medications. The only thing of note here is that I take both Lovastatin 20 mg. p.o. (by mouth) b.i.d.(twice a day) for high cholesterol and Quinaretic 12.5/20 for HBP. These two disorders added to the CKD made my health picture pretty bleak, and I couldn’t pretend it didn’t anymore.

Patient Vitals were the next item in the report and include blood pressure, pulse and weight (can’t get away from that in medical issues). They actually looked pretty good: well within range and appropriate (except for the weight, of course). So how could I have CKD? I kept coming back to that same thought. Now that I look at it in retrospect, I must have been a tough nut to crack: perfectly compliant, but alienated from the disease.

Following is the complete entry for Physical Examination: General. Although a great deal of it is redundant, there is some new information that I’ll explain in a later blog.

GENERAL: Appears as stated age. (I was insulted and decided that my youngish nephrologist just didn’t appreciate older women who didn’t look their age.)  Well nourished. (I was on a roll here and decided he meant I was fat. This is actually a referral to general wellness.)

HEENT [Head, Eyes, Ear, Nose, Throat]: No oral thrush or ulcers. Anicteric sclera. Pink conjunctiva.

NECK: No Lymphadenopathy . No acanthosis nigricans.

CARDIOVASCULAR: Regular rate and rhythm, S1, S2. No murmurs or rubs. No S3 or S4 gallop.

PULMONARY: Lungs are clear to auscultation bilaterally.  No wheezing, rales or rhonchi.

ABDOMEN: Nondistended. Soft.

EXTREMITIES: No lower extremity edema. Acyanosis.

VASCULAR: Good bounding radial pulses, equal and bilateral.

MUSCULOSKELETAL: No flank pain on palpation to the kidney. No paraspinal tenderness.

JOINTS: No effusion or stiffness of the   hands.

SKIN: No rash or unusual discoloration.

NERUO: Able to stand without evidence of orthostatis. Steady gait.

PSYCH: Alert and oriented.  Good insight.

There is nothing in the General Physical Examination that indicates I have CKD, but I do. Just as there is nothing in the Review of Systems that indicates I have CKD, but I do.  I realize many of the terms the nephrologist used are too technical and may need an explanation.  That will be coming when I offer you the glossary, later on.  For right now, they were all negative, so we don’t need to deal with them here and now.

The LABORATORY DATA section of the doctor’s report told a different story. It started with the date of my latest 24 hour urine creatinine clearance followed by a repeat of the readings.

The only ones that caught my eye were the BUN and creatinine. BUN means Blood Urea Nitrogen and may indicate a lowering of kidney function.  While my reading of 20 was not the outside limit for someone in her 60s, it was close enough to the 23 that was outside of normal limits to make me nervous. As for creatinine, the more in your blood, the less the kidneys are filtering via your urine. My 1.2 reading was out of range completely.

I already knew there was a problem, and I was doing my best to understand what it meant. My physician was a peculiar mix of cautionary and reassuring, but I couldn’t seem to get my mind around this information and what it did and did not mean to me.

The next report was IMAGING STUDIES, in this case, an ultrasound. In addition to what was noted in my chart, an ultrasound was also used to determine the number of kidneys you have as well as any blockage, stones or abnormalities. It noted the size and appearance of my kidneys, then described the location and size of several benign cysts.

Now I had cysts on top of kidney disease?  I was afraid to ask any questions for fear of more bad news except this turned out not to be such bad news.  According to the nephrologist, cysts this small were of no consequence and ordinary. I’ve never felt more grateful to have some part of my body described as ordinary.

There’s still more, but not now.  I find that when the information gets technical, less is best.

So, until Friday,

Keep loving your life.

Employers are Not the Only Ones Who Ask You to “Pee in the Cup.”

We’re not quite done with the urine tests.  Chances are, while you might not have gotten to NYC’s Broadway to see “Urinetown,” you’ve been asked to “pee in the cup” by more than one prospective employer. That’s also part of the urine test for CKD patients.

The Random Urine Tests

When you read random urine test, think, “pee in the cup.” You’ll be asked to do this, as well as give blood, when you bring your 24 hour urine collection to your lab. Oddly enough, in this case random refers to a special time of the day, namely the time of day you’re producing a urine sample. While these are not as accurate as the 24 hour urine collection tests we discussed on Friday, they do allow your doctor to see how much of each element is being secreted when you urinate.

To illustrate the importance of this test, one summer I’d suffered infection after infection for a total of five.  This necessitated quite a few random urine tests to watch the white blood count.  When that count was elevated, an infection was present.  When it wasn’t, the antibiotics had accomplished their task and I was finally infection free.  Here are explanations of some of the specific tests.

2498 deals with the creatinine that is voided in the urine at one specific time. In other words, this test measures the creatinine in one urine sample rather than during the entire 24 hour collection period.

209245 Immunofixation, Urine, Random is used to assess the state of your immune system. (Notice this was also tested in the blood.)

9929 Microalbumin, Ur, Random, Normal 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.

209198 Protein, Electrophoresis, Urine serves the same purpose as the blood test for this. It separates the different components of protein in your urine, rather than in the blood.

209245 Immunofixation, Urine, Random identifies the proteins found in the test explained above.

2482 Protein, Urine Random, Normalized is similar to 2043 (Protein, Urine Timed). The difference is that this measures the protein in one sample of your urine, rather than the entire 24 hour collection period’s urine.

And then, there’s 203405 Urinalysis, Complete which can’t be part of the 24 hour collection due to the additives used to preserve the specimen.  It is complete in another way. The urine is visually examined for color, transparency and odor.  This is what you usually hear about as the urine test for drugs, but this also may catch signs of different diseases.

Food and drugs can change the color of urine, but so can concentration or dilution of the urine. CKD patients are instructed to drink 64 ounces of liquid a day.  Too much will make the color of your urine very light. Not enough will cause your urine to become a deep yellow.

Cloudiness, rather than transparency, could mean kidney stones or the beginning of a phosphate or urate which may indicate a  problem. Urate is a salt of the uric acid whose presence could indicate gout. The presence of either element could also mean that the sample has been unrefrigerated for too long or that a bacterial growth is present. Either way, it’s an indication that more testing is needed.

While unusual urine odor could be due to a plain, old, ordinary urinary tract infection, it might also be caused by ketone bodies in the urine. When the kidneys or liver break down fatty acids for energy, these are the by products which are used by the heart and brain for energy. There could be any number of causes for their presence, but the important part is that diabetes may be one of them.

Just a little bit more of this. The second part of the Complete Urinalysis deals with specific gravity of the urine which has been tested since abnormally diluted urine may indicate kidney disease. High specific gravity may indicate diabetes, which is one of the primary causes of CKD. My reaction to this was a big question mark about just what gravity was in the first place. It turned out to be the concentration of particles in the urine. Evaluating this helps evaluate your body’s water balance and urine concentration.

The biochemical part of the urinalysis tests leukocytes, nitrates, Ph, proteins, ketones, urobilinogen, glucose, bilirubin, blood, and hemoglobin. To be as succinct as possible: leukocytes are one of the white blood cells that fights bacterial infection; nitrates present in the urine indicate bacteria and possibly diabetes; high Ph may point to an over consumption of protein (I’m limited to five ounces a day) or CKD while low Ph may point to diabetes or dehydration.

Protein in the urine, or proteinuria, is one of the signs of kidney disease. Ketone presence might be caused by uncontrolled diabetes. High urogilinogen levels could be an indication of anemia. High glucose levels might be the result of diabetes. Bilirubin in the urine could be the result of liver failure. Blood in the urine may indicate some kind of kidney disorder.

Hemoglobin in the blood may be a result of the breakdown of red cells. Hemoglobin in the red blood cells is what carries the oxygen through your body. These are not the only causes for finding these elements in the urine. Should you decide you’d like to know more, try one of the online medical dictionaries.

The final part of the urinalysis is microscopy and sediment. The sediment part refers to the particles that settle to the bottom when urine is allowed to stand for several hours and then examined under a microscope.

Albumin, stagnant urine, cellular debris and low urine filtration rate can cause a protein cast in the urinary sediment. Proteinuria can indicate kidney disease – as you probably remember.

Urinary sediment doesn’t usually contain crystals unless alkalization is present. As mentioned before, high Ph – or alkalization – may indicate kidney disease. But, then again, it may indicate not enough water intake or high water elimination.

There should be no micro-organisms in the urine sediment, but their presence may indicate a urinary tract infection – which is bacteria based – or kidney infection – which is yeast based. Other micro-organisms that may be detected are parasites, spermatozoa and mucus.

Now that the explanations of the tests are complete, you’re probably aware of how many times I wrote may indicate and can cause. Understanding your blood and urine results is a more precise science than can be explained with a boiler plate list of what causes which problem or what each test may mean.  Your doctor will be able to understand how the results of one test – or even one part of one test – implicate the other tests. The tests produce the pieces of your evaluation.

It’s almost like a thousand piece jigsaw puzzle; some people are good at putting those together, others aren’t.  Your doctor is the one who’s good at it, although it doesn’t hurt to have a passing knowledge of just what is happening in what flows through your body.

That’s enough for now.  All those numbers are making my head hurt.

Until Friday,

Keep loving your life!

Published in: on November 9, 2010 at 7:40 pm  Leave a Comment  

Not “Urinetown,” but Urine Test.

You’ve heard of the very successful musical, “Urinetown”?  Surprisingly, it’s not really about urine, but this blog is.  By the way, the play is running at Paradise Valley Community College in Arizona from the 12th to the 21st of November.

 

The 24 Hour Urine Collection Tests

There’s a 24 hour urine collection analysis requested on my yearly script and probably on yours, too . The written instructions about cleaning your genitals may not be clear.  If not, ask.  It’s better to take a few extra minutes of the P.A. or M.A.’s time for an explanation than having to collect the urine all over again due to contamination.  Your nephrologist will have already given you the container for collection and, if you are female, a collection seat (for lack of a better term).  This is something you place over your open toilet seat to insure you don’t waste any of the urine.

Well, that is, after the first urination of the day.  That one goes directly down the toilet and is not part of the collection. You’ll also be instructed to do what should be obvious: wash your hands both before and after you urinate and be sure not to allow any foreign substance like menstrual blood, toilet paper, or fecal matter to get into your urine collection.

You’ll need to refrigerate the specimens as you collect them during the 24 hour urine collection. It’s important to catch all the urine you produce during this time period since the amount of urine you produce [the volume] is used in the equation that determines your stage of CKD.  That means you’re going to have a large opaque container that is highly reminiscent of a milk container in your refrigerator for 24 hours.  Surely, the need to label the container is clear.

You’ve got to make certain the lab understands your doctor’s orders and your doctor has really ordered the tests you’re taking.  I recently had the unhappy experience of having my 24 hour urine collection tossed by the lab.  It wasn’t on the script I brought them from my nephrologist, and when they called his office at my insistence, they were told it wasn’t time for that and not to accept the specimen.  At my next doctor’s appointment when I told him what had happened, he said nothing – just pantomimed banging his head against the wall.

One of the tests ordered is 1100 Creatinine Clearance. When compared to the amount of creatinine in your blood, this is the most accurate test to assess how well the kidneys are filtering the creatinine from your blood. Remember, creatinine is the waste product from muscle metabolism. The less creatinine in your urine, the more in your blood, which means the kidneys are not working as well as they should be.

You need to be aware that creatinine clearance values go down as you age.  One source suggested 6.5 mL/min for every 10 years past age 20. You’ll see your mL/min on your test results. The decrease in clearance values as you age meant quite a bit of figuring for me since I’m in my mid sixties. It only reaffirmed that you just can’t get away from math with this disease.

Another test, 1101, also deals with creatinine, but this is slightly different in that the urine is timed. Since creatinine is not recycled in the blood, it is produced at a constant rate and only the kidneys filter it out of the blood. This test is a more exact determination of how well or poorly the kidneys are doing their job.

Then there’s 2043, Protein, Urine Timed which checks for protein in the urine during a specific time period, 24 hours in this case.  Since one of the jobs of the kidneys is to filter the protein from your blood and then reabsorb it, there should be very little to no protein in your urine if your kidneys are functioning well.

I read these test explanations again and again as I blog, monitor Kidney Matters on the OTC Facebook page, and finish editing the book and I am amazed at what your blood and urine can say about the condition of your health.  I don’t think I’d be at all surprised if one day soon someone invented an at home CKD urine test, sort of like the at home pregnancy tests that are now available.

I doubt that will happen before Tuesday, so until then,

Keep loving your life (“keep living” didn’t quite say what I meant)!

Published in: on November 5, 2010 at 7:01 pm  Leave a Comment  

The Doctor’s Appointment That Led to a Nephrologist

Let me think!  The doctor is talking about kidney disease and the triglyceride test result is out of range. I was given a pamphlet on triglycerides and told to lower that number within the next month.  This was getting so complicated.  I thought we were looking for kidney disease. The booklet told me that triglyceride was a bad fat, just like LDL cholesterol, which could affect my heart and blood vessel health, and that cardiovascular disease (read heart and arteries) is the number one killer of Americans. Great, now it’s not only the liver and the kidneys I need to worry about, but also the heart and arteries. I mean MY liver, kidneys, heart and arteries.

It was made clear that lifestyle changes just might do the trick as far as the triglyceride number. Other than a little dancing here and there, I no longer did much exercising by now. Okay, I resolved, I would again dance vigorously several times a week.  My doctor agreed, but gently suggested I add some kind of movement every day.  I had unwittingly become a sedentary person – a couch potato.  What could I do? I’d figure it out later. I was not to smoke, drink, or do drugs. That wasn’t going to make any difference because I didn’t do any of that anyway.

Dietary changes were necessary, too.  I was to eat at least five servings of fruit and vegetables daily (You’ll see later that this is not in accordance with the renal diet). Grain products were to be added.  I had no argument with that: my grandfather had been a miller in The Ukraine so my love of bread must have been in the genes. There were other restrictions that didn’t seem to be problematic until I received the renal diet a short time later. Many of the restricted foods on that diet were suggested to help control the triglyceride number.

My head was spinning.  I’d thought it was enough to eat fresh, organic food and rarely ate meat.  It just didn’t taste that good to me. I needed to know about BMI (Body Mass Index) which involved all those numbers – the nemesis of my life – and now they were to be a daily part of my life.

 Come to think of it, it’s a good thing I didn’t know about the weighing and measuring involved with the renal diet at this point. I was already swimming in that foreign sea of numbers.

 Ummm, I may have neglected to mention that according to my BMI at this time, I was obese.  I don’t know which was more of a shock – that I had such serious medical issues or that I was obese.

Trans-fatty acids would have to go, too. I readily agreed thinking it might be nice to know what I just agreed to. The doctor took a look at my eyes wandering around the office and realized I had no clue.  She explained, with the pamphlet’s help, that these are found in fast foods (Damn!  No more McDonald’s drive through breakfasts), cookies and doughnuts (I naively thought it wouldn’t be a problem to cut these out) and deep-fried food (no more calamari or onion rings?) among other things. It’s a good thing that I started cutting these foods out right away because it made adhering to the renal diet a little bit easier later on.

For those of you on the edge of your seat, between the food and exercise changes, I was able to lower the triglyceride number to within the acceptable range within the month. Unfortunately, at the same re-test my GFR was even lower, and my BUN higher – not good – yet my creatinine was within range.  It was time for a nephrologist. I also noticed I’d lost a pound without making any changes yet.  Was I that worried? It doesn’t sound like a lot, but I’d been the same exact obese weight for over two years.

Published in: on September 29, 2010 at 3:34 pm  Leave a Comment