Getting a Little Too High

You know those blood and urine tests you take periodically?  Have you ever looked at your uric acid levels? It might be worth the effort. This is from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Uric Acid levels in the blood can indicate that you’re at risk for gout, kidney stones, or kidney failure.  It’s the kidney’s job to filter uric acid from the body.  A buildup means the kidneys are not doing their job well.”

For the first time ever – and I’ve had Chronic Kidney Disease for nine years – my uric acid levels were high. Why now? What could this mean? I already know I have Chronic Kidney Disease. I haven’t had a kidney stone in nine years and was unaware of having that one until my nephrologist told me I did. Is it gout?

Time to back track. What is uric acid anyway?

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 (Hang on; I’m working on simplifying that title.), I used the Merriam Webster Dictionary at https://www.merriam-webster.com/dictionary/uric%20acid for this 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.”

Back to gout, in SlowItDownCKD 2016, I wrote a little bit about one of the causes of gout: purines in our diet.

“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.’

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”

This doesn’t work for me. Except for shrimp which I’ll have two or three times a year, I don’t eat or drink any of this food.

Grrrrrr. Back to the drawing board. Let me see if I can find other causes of high uric acid levels. The Mayo Clinic at http://www.mayoclinic.org/symptoms/high-uric-acid-level/basics/causes/sym-20050607 had some other suggestions:

“Factors that may cause a high uric acid level in your blood include:

  • Diuretic medications (water pills)
  • Drinking too much alcohol
  • Genetics (inherited tendencies)
  • Hypothyroidism(underactive thyroid)
  • Immune-suppressing drugs
  • Niacin, or vitamin B-3
  • Obesity
  • Psoriasis
  • Purine-rich diet — liver, game meat, anchovies, sardines, gravy, dried beans and peas, mushrooms, and other foods
  • Renal insufficiency — inability of the kidneys to filter waste
  • Tumor lysis syndrome — a rapid release of cells into the blood caused by certain cancers or by chemotherapy for those cancers

Also, you may be monitored for high uric acid levels when undergoing chemotherapy or radiation treatment for cancer.”

As far as I know, I don’t have an inherited tendency toward high uric acid levels. Nor do I have hypothyroidism, take immune-suppressing drugs, niacin, or vitamin B-3. We already know that I don’t drink alcohol or eat purine rich foods, and have CKD. I’ve never been treated for cancer, so what’s left?

Hmmm, I do take a diuretic, am obese, and have psoriasis. Wait a minute. I thought diuretics helped you reduce the amount of water and salt in your body. Now they may cause high uric acid? How? Drugs.com at https://www.drugs.com/health-guide/gout.html helped me out here:

“The kidneys do not excrete enough uric acid. This can be caused by kidney disease, starvation and alcohol use, especially binge drinking. This also can occur in people taking medications called diuretics (such as hydrochlorothiazide or furosemide).” Time to speak with my doctor about this prescription, I think.

My psoriasis is so latent that I often forget I have it. However, Arthritis.org at http://www.arthritis.org/about-arthritis/types/psoriatic-arthritis/articles/psoriatic-arthritis-increases-gout-risk.php tells us:

“In gout, uric acid builds up in the joints and tissue around the joints – often the big toe – and forms needle-like crystals, which can cause sudden episodes of intense pain and swelling. If left untreated, gout can become chronic and lead to joint damage. In psoriasis and psoriatic arthritis, uric acid is thought to be a byproduct of rapid skin cell turnover and systemic inflammation.”

That also explains what gout is, which I’d neglected to do. Something kept nagging at my memory (oh, to have a clear memory without the nagging for a change.) Got it. It was in SlowItDown 2016:

“Ah, we know Chronic Kidney Disease is an inflammatory disease. Now we know that arthritis is, too. Being a purist over here, I wanted to check on psoriasis to see if falls into this category, too. Oh my! According to a Position Statement from the American Academy of Dermatologists and AAD Association:

‘Psoriasis is a chronic inflammatory, multi-system disease associated with considerable morbidity and co-morbid conditions.’

Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease.”

I’m beginning to see the pattern here. Well, what about the weight? I discovered this quote on The Arthritis Foundation’s Gout Blog at http://blog.arthritis.org/gout/weight-gout-risk/ :

“’Higher weight is associated with higher uric acid levels in the blood, which therefore increases gout risk,’ says Tuhina Neogi, MD, PhD, associate professor of medicine at Boston University School of Medicine.”

That strong connection between inflammation and weight leaves me speechless. It seems so transparent, yet I somehow manage to forget it repeatedly. Ugh!

Book news: In honor of my first born’s birthday, my miracle (I was considered a really old first time mother back then), my sun-up-in-the-sky (That’s the translation of her Tibetan name), all my kidney books will be reduced in price by 20%. as of May 6th. Go to Amazon.com and/or B&N.com and then thank Nima for the present.

Until next week,

Keep living your life.

How Sweet She Is

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

FullSizeRender (2)

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

Until next week,

Keep living your life!

We, the People Who Have CKD…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

* IC means interstitial cystitis; PBS is painful bladder syndrome

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

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

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

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

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

What is itUntil next week,

Keep living your life!

Bridging the Gap…

Which gap? The anion. What’s that, you say.

“The anion gap deals with the body’s acidity. A high reading for the anion gap could indicate renal failure.”

Book CoverThat’s what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. But you know what? It’s just not enough information any more. Why? I’m glad you asked.  Oh, by the way, if you want to check your own reading look in the Comprehensive Metabolic Panel part of your blood tests, but only if your doctor requested it be tested.

I mentioned a few blogs back that I returned to a rheumatologist I hadn’t seen in years and she chose to treat me as a new patient. Considering how much had happened medically since I’d last seen her, that made sense to me and I agreed to blood tests, an MRI, and a bone density test.

The only reading that surprised me was an abnormally high one for anion gap. The acceptable range is 4 – 18. My reading was 19.  While I have Chronic Kidney Disease, my kidneys have not failed (Thank goodness and my hard work.) In addition, I’ve become quite aware of just how important acidity and alkaline states are and have been dealing with this, although apparently not effectively.

MedFriendly at http://www.medfriendly.com/anion-gap.html – a new site for me written by Dr. Dominic Carone for the express purpose of simplifying complex medical terms for the lay person – explains it this way:diabetes equipment

“…. Too high of an anion gap level can mean that there is acidosis (too much acid in the blood) due to diabetes mellitus. The high anion gap level can also be due to lactic acidosis, in which the high level of acid is due a buildup of a substance called lactic acid. … A high anion gap can also be due to drug poisoning or kidney failure. …When the anion gap is high, further tests are usually needed to diagnose the cause of the problem.”

Ah, I remember writing a bit about acidosis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. It had to do with DIGITAL_BOOK_THUMBNAILfruits and vegetables.

“’After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. Our findings suggest that an apple a day keeps the nephrologist away,’ study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.

Apparently, some CKD suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

Okay, I like fruit and I like vegetables. Ummm, will my limitation of three servings of each within the kidney friendly fruit and vegetable lists do the trick, I wonder. Looks like I’ll be questioning both the rheumatologist and the renal dietician about that.

Recently I’ve written about alkaline being the preferred state of a CKD patient’s body. That is the antithesis of an acid body state. Years ago, Dr. Richard Synder was a guest blogger here and also interviewed me on his radio show. He is the author of What You Must Know about Kidney Disease and a huge proponent of alkaline water.  Here’s what he had to say about that (also from Part 1):

“I have taken alkaline water myself and I notice a difference in how I feel. Our bodies are sixty percent water. Why would I not want to put the best517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_ type of water into it? Mineralized water helps with bone health.  In alkalinized water, the hydroxyl ions produced from the reaction of the bicarbonate and the gastric acid with a low pH produce more hydroxyl ions which help buffer the acidity we produce on a daily basis. (Me interrupting here: During our visit last Monday, I noticed that my extremely health conscious, non-CKD, Florida friend drinks this.)

Where are these buffers? In the bones and in the cells, as well as some extracellular  buffers. You  are  helping lower  the  total  body  acidity  and decreasing the inflammation brought on by it. You do this early on so that you don’t have a problem with advanced acidosis later. Why wait until you are acidotic before doing something?”

Notice his comment about lowering body acidity and decreasing inflammation.  We already know CKD is an inflammatory disease.  There was Digital Cover Part 2 redone - Copysomething to this. I went back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 to tease it out.

“‘Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would).’

You can read the entire article at http://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

Inflammatory?  Isn’t CKD an inflammatory disease? I went to The National Center for Biotechnology Information, which took me to the National Library of Medicine and finally to a National Institute of Health study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3332073/   for the answer.

‘The persistent inflammatory state is common in diabetes and Chronic Kidney Disease (CKD).

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.’”

Phosphorous? Once we have CKD, we do have phosphorous restrictions. But I have never had high phosphorous readings.  Maybe I should be exploring an abundance of lactic acid as a cause of the high anion gap reading instead.

According to Heathline.com,

adam_liver_8850_jpg“Lactic acidosis occurs when there’s too much lactic acid in your body. Many things can cause a buildup of lactic acid. These include chronic alcohol use, heart failure, cancer, seizures, liver failure, prolonged lack of oxygen, and low blood sugar. Even prolonged exercise can lead to lactic acid buildup.”

I’m definitely barking up the wrong tree here.

Wait a minute. I recently started using a BiPAP since I have sleep apnea and wasn’t exhaling enough CO2. That could cause acidosis, but it would be respiratory acidosis. Say, a basic metabolic panel would expose that. Nope, that’s not it either since my CO2 levels were normal.

It looks like this is going to be one of those blogs that asks more questions than it answers. I do have an appointment with the rheumatologist on the 20th and will ask for answers then.

Until next week,

Keep living your life!SlowItDownCKD 2015 Book Cover (76x113)

Connected

dictionaryFull Definition of connected from the Merriam-Webster Dictionary

 1:  joined or linked together

2:  having the parts or elements logically linked together <presented a thoroughly connected view of the problem>

3:  related by blood or marriage

4:  having social, professional, or commercial relationships <a well-connected lawyer>

5: of a set:  having the property that any two of its points can be joined by a line completely contained in the set; also:  incapable of being separated into two or more closed disjoint subsets

Growing up in New York, I often heard the word used to suggest someone was associated with the Mafia.  You know, like you see in gangster movies. But, that’s not what today’s blog is about. It’s about the connection among all the chronic ailments you have. That would be the second definition.

Before we start, I need to remind you that I’m not a doctor and have never claimed to be one. This is my thinking from my research. This blog was sparked by a conversation on the Facebook page Stage 3 ‘n 4 CKD Kidneybeaners Gathering Place and Robin Rose who got me to thinking about the connection between CKD and inflammation. Maybe it will give you something to think about, too.

PubMed, part of the U.S. National Library of Medicine, National Institutes of Health at http://www.ncbi.nlm.nih.gov/pubmed/19083024 tells us:banner-nihlogo

“Inflammation is the response of the vasculature or tissues to various stimuli. An acute and chronic pro-inflammatory state exists in patients with chronic kidney disease (CKD), contributing substantially to morbidity and mortality. … Inflammation contributes to the progression of CKD by inducing the release of cytokines and the increased production and activity of adhesion molecules, which together contribute to T cell adhesion and migration into the interstitium, subsequently attracting pro-fibrotic factors. Inflammation in CKD also causes mortality from cardiovascular disease by contributing to the development of vascular calcifications and endothelial dysfunction. … “

In that one quotation, you have the definition of inflammation and its causes. I thought I’d try easing into this difficult explanation.

DIGITAL_BOOK_THUMBNAILIn The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I accepted the connection, but without thought:

“And to answer your question about what colon cancer has to do with Chronic Kidney Disease, you have to remember you are medically compromised already. Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.”

That’s two chronic diseases caused by inflammation: CKD and colon cancer. There are more, many more.

By the time I wrote The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I was aware that sinusitis is another inflammatory disease.

“According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842:Digital Cover Part 2 redone - Copy

‘The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.’”

That’s three chronic diseases caused by inflammation: CKD, colon cancer, and sinusitis. But there are more, many more.

Last year, I wrote SlowItDownCKD 2015 and included this information:

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

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

SlowItDownCKD 2015 Book Cover (76x113)That’s four diseases caused by inflammation: CKD, colon cancer, sinusitis, and cystitis. But there are more, many more.

According to MedicineNet at http://www.medicinenet.com/psoriasis/article.htm :

“Psoriasis is a noncontagious skin condition that produces plaques of thickened, scaling skin. The dry flakes of skin scales are thought to result from the excessively rapid proliferation of skin cells triggered by inflammatory chemicals produced by specialized white blood cells called lymphocytes. Psoriasis commonly affects the skin of the elbows, knees, and scalp.”

That’s five diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, and psoriasis. But there are more, many more.

Let’s not forget rheumatoid arthritis. Arthritis.com at http://arthritis.com/rheumatoid_arthritis_symptoms tells us:

“Rheumatoid arthritis (RA) is an autoimmune disease where the body’s immune system attacks normal joint tissues, causing inflammation of the joint lining.

rheumThis inflammation of the joint lining (called the synovium) can cause pain, stiffness, swelling, warmth, and redness. The affected joint may also lose its shape, resulting in loss of normal movement. RA is an ongoing disease, with active periods of pain and inflammation, known as flares, alternating with periods of remission, when pain and inflammation disappear.”

That’s six diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, psoriasis, and rheumatoid arthritis. But there are more, many more.

I wouldn’t lose hope even though inflammation seems to be the common thread in chronic disease, though. According to an article in last year’s Blood Purification Journal at https://www.karger.com/Article/FullText/368940 , simple lifestyle modifications can help with inflammation:

“Chronic inflammation should be regarded as a common comorbid condition in CKD and especially in dialysis patients. A number of interventions have been proven to be safe and effective in well-designed clinical studies. This includes such inexpensive approaches as modification of physical activity and dietary supplementation. “

For example:  Dr. Richard Synder, O.D.,  suggested an alkaline/anti-inflammatory based diet when he guest blogged.

If you know an expert in the field of Chronic Kidney Disease and inflammation, let me know who that is so I can contact them to ask if they’d like to guest blog for us.

I know you each have a great deal more to say about Chronic Kidney Disease and inflammation… and so do I, so before you protest that this isn’t all there is to the topic: you’re right, but one weekly blog can only go so far. Please feel free to comment about other inflammatory diseases and how they’re affecting your CKD. I only mentioned six of them.

Until next week,Book Cover

Keep living your life!

Apple Cider Vinegar?

I woke up thinking, ‘apple cider vinegar.” Granted, that’s an odd thought for the first thing in the morning… or is it? Last week, I blogged about the Apple-Cider-Vinegarbenefits of drinking lemon juice in a glass of water first thing in the morning. Okay, you’ve read the blog; you know that.

What you may not know is that the blog is posted on a multitude of Facebook chronic illness sites. A reader on one of these sites commented on the blog. I don’t remember exactly what she said, but it had something to do with her taking apple cider vinegar every day to help keep her body in alkaline balance.

Ah, now that first thought of the day today is starting to make sense. Monday is blog day for me. It looks like my mind was providing me with a topic for today’s blog.SlowItDownCKD 2015 Book Cover (76x113)

I’ll bet the first question you have is why she would want to help keep her body in alkaline balance. Let’s do a little back tracking to answer that question. As per last week’s blog, Dr. Jonny Bowden, a nutritionist and health author, tells us, “Having a healthy alkaline balance helps fight germs.” No contest, I’m sure we all want to do that.

I know, I know, now you’d like to know why alkaline balance – as opposed to acidic body chemistry – does that.  I do, too.  An article on MedIndia, a respected medical site, at http://www.medindia.net/patients/lifestyleandwellness/alkaline-diet.htm explains this:

“A pH of less than 7 is acidic and a pH of more than 7 is alkaline, water being neutral with pH=7. Since one of the most important measurements of health is the pH of the body fluids, it is very important to have an acid-base balance. Any imbalance, especially those leaning towards acidic, could be associated with health disorders including obesity, tiredness, premature aging, heart disease, diabetes and cancer.”

Reminder: “The pH of a solution is a measure of the molar concentration of hydrogen ions in the solution and as such is a measure of the acidity or basicity of the solution.” Thank you, Hyperphysics at http://hyperphysics.phy-astr.gsu.edu/hbase/chemical/ph.html for the definition.

Did you catch diabetes in the MedIndia quote? That is the number one cause of Chronic Kidney Disease. This is what I wrote about that in my first What is itCKD book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease,

“In fact, the U.S. has the highest rate of CKD with 210 people per million having it, and two thirds of those cases caused by diabetes or HBP.”

And that was back in 2011. Two thirds of 210 people per million. .. and we don’t know how many of them developed CKD from HBP – or diabetes. Taking no chances, I’ll opt for alkaline balance in my body, even though I already have Chronic Kidney Disease.

Next question: how does apple cider vinegar help keep a body in alkaline balance? Let’s go back to last week’s blog again.

“Body Ecology at http://bodyecology.com/articles/acidic-foods-and-acid-forming-foods-do-you-know-the-difference had exactly what I needed:

‘To clear up some of the confusion:

  • Acidic and alkaline describe the nature of food before it is eaten.
  • Acidifying foods and acid-forming foods are the same, making the body more acidic.
  • Alkalizing foods and alkaline-forming foods are the same, making the body more alkaline. ‘”

All right then, we get it that something acidic – like vinegar – could actually be alkaline once it’s ingested. And we understand that an alkaline balance can keep us healthier. But we have CKD. Is apple cider vinegar something we can take?

Kidney Hospital China at http://www.kidneyhospitalchina.org/ckd-healthy-living/961.html was helpful here, although I am still leery of websites that offer online doctor advice. They maintain that it can lower your blood pressure – a good thing since high blood pressure is not only a cause of CKD, but also can make it worse. They also consider it an anti-inflammatory, although I’m beginning to wonder if all alkaline foods are. Then they mention it helps prevent colds and removes toxins in the blood. Both will help relieve some of the kidney’s burden.

This warning was the first I’d seen in all the blogs and natural eating sites I perused for information about today’s topic… and it comes from Kidney Hospital China:

“Apple cider vinegar is high in potassium and phosphorus, so kidney disease patients who have high potassium and high phosphorus levels in blood need to avoid the intake of the drinks.”

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I referred to an article entitled Vegetarian diet helps kidney disease patients stay healthy in order to point out why we need to keep our phosphorous levels low:

“Individuals with kidney disease cannot adequately rid the body of phosphorus, which is found in dietary proteins and is a common food additive. Kidney disease patients must limit their phosphorous intake, as high levels of the mineral can lead to heart disease and death.”

IMG_1398

 

In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I succinctly reminded us why we want to watch our potassium intake:

“But isn’t potassium good for you?  After all, it does help the heart, muscles, and our beloved kidneys function normally as well as dumping wastes from our cells. Here’s the kicker, an excess of potassium can cause irregular heartbeat and even heart attack.”

All in all, I think this might be a go. Do talk it over with your nephrologist or renal dietician before you start on a regiment of apple cider vinegar. I only research; they’ve been to medical school. By the way, many of these sites talked about the pleasing taste of this drink. I may have to try it just to see if any drink containing vinegar tastes good.

I have not forgotten that I promised to give you the link to the most recent podcast. I had thought the topic was going to be my Chronic Kidney Disease Awareness Advocacy, but the skillful interviewer – Mike G. – managed to cover every aspect of my life.

Until next week,

Keep living your life!

If Only It Had Been an April’s Fools Joke

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Part 2

DIGITAL_BOOK_THUMBNAIL

 

Until next week,

Keep living your life!

Tempus Fugit Iterum or Time Flies When You’re Having Fun, Part 2

Who would have thought there was so much information to share about colonoscopies? And who thought it would actually be interesting? Not me. But acting like a grown up and taking care of my health is both informative (We all know I research everything. It seems to be a compulsion.) and interesting. One site brings me to another.

colonoscopySince last week, I’ve gotten a few questions about the topic. One is how often should this be done? As we learned last week, most people – those without any risk factors – start at the age of 50. I started a bit later than that and had normal results, so was told I wouldn’t need one for another ten years. Yay!

That’s when things changed: sometime during the second decade after the first colonoscopy. This was almost five years ago.  The change was that several colon polyps were removed this time; some because they were bleeding, some because they were the larger kind that could become cancerous (adenoma).

Apparently, bleeding colon polyps are troublesome because they can be the source of your fatigue if you already have low levels of iron as most CKDers do. At least, that’s what my former nephrologist said. Although they were bleeding, removing them did not stop the fatigue.  Maybe it was the sleep apnea…or maybe it was just plain being a Chronic Kidney Disease patient.Bleeding

Now, about that adenoma. AboutHealth at http://coloncancer.about.com/od/glossary/g/Adenoma.htm defines an adenoma in the following way.

An adenoma is a pre-cancerous (benign) growth that may occur in the colon. Adenomas arise from or resemble glands and can lead to colon cancer. This means that if left untreated, some adenomas eventually will develop into colon cancer. If an adenoma becomes cancerous, it is called an adenocarcinoma. Fortunately, adenomas typically are easy to find and to remove before they become cancerous, during routine colon cancer screening tests, such as adenomaa colonoscopy or a flexible sigmoidoscopy.

The American Cancer Society at http://www.cancer.org/cancer/news/specialcoverage/7thingstoknow has an easily understood, easy to read explanation of the whole process of colonoscopy and explains more than I have here.

While it sounds like an awful procedure, more often than not, you’re anesthetized first, both to make sure you don’t move (which might cause a perforation) and for your own comfort.

You are a medically comprised patient.  I’ll repeat that – you are a medically comprised patient.  As such, you need to be treated differently as far as anesthesia. Two things are very clear about anesthesia for us.

  1. The dosage of the anesthesia may have to be modified and
  2. You must let your doctor know on your first visit that you have Chronic Kidney Disease.

I was both disgusted and fascinated by the photos my gastroenterologist sent me after the procedure.  I saw the colon polyps.  I saw the inside of my colon. I simultaneously wanted to get as far away from those revolting pictures as I could AND examine them carefully to see just what was going on inside me.

I keep using the term colon polyp, but haven’t explained it yet. MedicineNet at http://www.medicinenet.com/colon_polyps/article.htm#what_are_colon_polyps will help us out here.

Colon polyps are growths that occur on the inner lining of the large intestine (colon) and usually protrude into the colon. Polyps form when the genetic material within the cells lining the colon changes and becomes abnormal (mutates). Normally, the immature cells lining the colon are programmed to divide (multiply), mature, and then die in a very consistent and timely fashion. However, the genetic changes that occur in the lining cells prevents (sic) the cells from maturing, and the cells do not die. This leads to an accumulation of immature, genetically abnormal cells, which eventually results in the formation of polyps. The mutations may occur as a sporadic event after birth or they may be present from before birth.

I’ve got to be honest. I don’t care how I got mine. I.simply.want.them.gone. It’s come home to me lately that I am closer to 70 than 60. It’s also come home to me lately that I love my life and want to keep it as long as I can.IMG_2867

Last week, I touched on the prep having to be tailored for your CKD, too. Here’s a warning from The National Kidney Foundation at https://www.kidney.org/atoz/content/oralsodium

Patients with chronic kidney disease (CKD) who use bowel cleansing products should be aware of a recent warning issued by the FDA for a type of sudden loss of kidney function or acute kidney injury, as well as, blood mineral disturbances. Phosphate crystal deposition in the kidneys causes the loss of kidney function, which can lead to kidney failure. The medical term for this condition is acute phosphate nephropathy.

The warning relates to the use of bowel cleansing agents, called sodium phosphate (OSP) products as laxatives or in preparation for colonoscopy. OSPs are available both with and without a prescription and are taken by mouth. These products can cause phosphate nephropathy.

On the other hand, The National Institutes of Health at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3678056/  has suggestions, although the parentheses are mine.Miralax

For early chronic kidney disease, PEG (4 L polyethylene glycol) or SPMC (2 L sodium picosulphate plus magnesium citrate) are acceptable. Cases with late chronic kidney disease without dialysis should be prescribed with PEG or PEGA (2 L PEG plus ascorbic acid). SPMC have a risk of hypermagnesemia in patients with kidney disease without dialysis.

Obviously, that’s something to discuss with your nephrologist. By the way, one polyethylene glycol product is Miralax, an over the counter medication. The picture above does not indicate an endorsement of the product.

What is itHere I am in NYC, not spending all that much time thinking about CKD except for the sleep, diet, exercise, and lack of stress (nothing else, though) and having a grand old time with my daughter. In other words, I haven’t paid any attention to the GiveAway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. That’s the book Geo was reading in last week’s blog. Do let me know if you’re one of the winners so we can celebrate you.

Oh, and don’t forget about that book’s twin younger siblings.IMG_1398

Until next week,

Keep living your life!

Time Flies When You’re Having Fun

IMG_1625Last week, Bear and I were in Las Vegas for a mini-family reunion. It was my mother’s nephew’s… let’s just say it was a combination of blood relatives and those we consider relatives without the blood connection.

What with the complimentary hotel room at the absolutely gorgeous SLS (which we understand was formerly the Sahara) and the gift of tickets to the outrageous show ‘Diva’ (male impersonators of female celebrities), an edifying tour of The Neon Boneyard, a family Las Vegas style buffet at Red Rock Casino, and a leisurely stroll down the overly-stimulating Fremont Street, we had a wonderful time.

I even got in my usual 20 minutes of gambling. I don’t really have tolerance or a liking for it, but it seemed the right thing to do since that was why the hotel gave us the two nights gratis. I won.IMG_1638

But in another way, I lost. My cousin Amy wasn’t there. She was part of this family. Her husband was there. Her uncle was there. Her mother and brothers were, but she wasn’t.  Three years ago she died of cancer.

She died within one week of my dearest, closest buddy on earth who also died of cancer. My buddy died of colorectal cancer. She’d refused any contact with the medical community for the last decade of her life and she paid the ultimate price for it.  A colonoscopy could have saved her life.

Almost five years ago, I had a colonoscopy… and now it’s time to have one again.  While this is not my favorite activity, I am willing to do so since cancer runs in my family and I’ve already had a bleeding polyp. These are not issues I usually share and, yes, it’s a bit awkward for me but if I can convince even one person who’s presently nauseated just thinking about colonoscopy to have one, it’s worth my personal discomfort.

While the term is becoming common, not everyone knows what a colonoscopy is. WebMd at http://www.webmd.com/colorectal-cancer/colonoscopy-16695 explains.

colonoscopy Colonoscopy is a test that allows your doctor to look at the inner lining of yoularge intestine (rectum and colon). He or she uses a thin, flexible tube called a colonoscope to look at the colon. A colonoscopy helps find ulcerscolon polyps, tumors, and areas of inflammation or bleeding. During a colonoscopy, tissue samples can be collected (biopsy) and abnormal growths can be taken out. Colonoscopy can also be used as a screening test to check for cancer or precancerous growths in the colon or rectum (polyps).

The colonoscope is a thin, flexible tube that ranges from 48 in. (122 cm) to 72 in. (183 cm) long. A small video camera is attached to the colonoscope so that your doctor can take pictures or video of the large intestine (colon). The colonoscope can be used to look at the whole colon and the lower part of the small intestine. A test called sigmoidoscopy shows only the rectum and the lower part of the colon.

Before this test, you will need to clean out your colon (colon prep). Colon prep takes 1 to 2 days, depending on which type of prep your doctor recommends. Some preps may be taken the evening before the test. For many people, the prep for a colonoscopy is more trying than the actual test. Plan to stay home during your prep time since you will need to use the bathroom often. The colon prep causes loose, frequent stools and diarrhea so that your colon will be empty for the test. The colon Normalprep may be uncomfortable and you may feel hungry on the clear liquid diet. If you need to drink a special solution as part of your prep, be sure to have clear fruit juices or soft drinks to drink after the prep because the solution tastes salty.

You have CKD; this is not the prep you will be using.

The National Institute of Health at https://www.nlm.nih.gov/medlineplus/colonoscopy.html suggests you have a colonoscopy for the following reasons.

  • To look for early signs of cancer in the colon and rectum. It may be part of a routine screening, which usually starts at age 50.
  • To look for causes of unexplained changes in bowel habits
  • To evaluate symptoms like abdominal pain, rectal bleeding, and weight loss

Let’s talk about prep a bit more. You cannot take the usually prescribed Fleet enemas or anything with oral sodium phosphate. Get it?  Sodium?  Phosphate?  Both bad news for CKDers.  One possible alternative is a polyethylene glycol (PEG) solution such as Miralax.  As usual, check with your nephrologist.

DucolaxDucolax is also often prescribed as prep for the procedure, but everydayhealth.com at http://www.everydayhealth.com/drugs/dulcolax-laxative makes clear it’s not automatically safe for CKD patients. (Bisacodyl is the compound name; Ducolax is the brand name.)  Take note of the first item on the list.

If you have any of these other conditions, you may need a dose adjustment or special tests to safely use bisacodyl:

  • kidney disease;
  • trouble swallowing;
  • a history of bowel obstruction, diverticulitis, ulcerative colitis, or other intestinal disorder; or
  • if you are taking a diuretic (“water pill”).

This is decidedly turning into a two part blog.  More on the curiously challenging concept of colonoscopy next week.

We’re not the only ones who took a vacation. Here’s a picture of the man behind the title of Loyal Reader, Geo De Angelo, on his vacation:

003

Meanwhile, back at the ranch (better known as my office), I wonder if you’re one of the winners in the GiveAway for What Is It and How Did I Get It? Early Stage Chronic Kidney DiseaseWhat is it. You know, the GiveAway in which I paid for ten of each eighth book bought. If you are, please announce yourself either here in the comments section, on the Facebook page – https://www.facebook.com/WhatHowearlyCKD – or on Twitter @SlowItDownCKD so we can publicly congratulate you. If you haven’t seen the GiveAway yet, you can at http://www.amazon.com/What-How-Did-Get-Chronic/dp/1457502143/ref=sr_1_1?ie=UTF8&qid=1445197041&sr=8-1&keywords=What+Is+It+and+How+Did+i+gET+IT%3F+Early+stage+chronic+kidney+disease.

If you missed it, no worries.  I’m presently working on a different sort of GiveAway with a certain Facebook Kidney Disease Support Group.  More on that next week when I have all the details. Oh, and let’s not forget about the twins (presently being indexed) …IMG_1398

Until next week,

Keep living your life!

Sunshine and Superwoman

sad womanToday is just one of those days: Bear’s car is in the shop so I got up early to take him to work, I turned on the dishwasher and nothing happened, I posted what I thought was a non-political message and got a political rant in return, answered a text only to find that my childhood friend thought I was ignoring her.  I’ve got a pretty happy life, so this was a disconcerting start of the day to say the least.

And then I opened the lab results for yet another blood test.  The one I wrote about two weeks ago was from August; this one is from last week. Should have saved it for tomorrow.

While the out of range results weren’t that much out of range, they were out of range.  Since this is one of those days, all of a sudden this became of great concern to me.

The Vitamin D, 25-Hydroxy, Total was 28.6 instead of within the 30.1 -100 normal range.  It would probably help you understand my mystification if I let you know that I’ve been taking 2000 mg. of vitamin D daily for several years.

I went running right back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to find out why this is important.  Thank goodness, I have my office copy!  How could anyone memorize everything they need to know about their health, I wonder.Book Cover

This is what I wrote about vitamin D (page 48):

  • The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use.
  • Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy.
  • Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together.
  • Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.
  • Phosphate levels can rise since this is stored in the blood and the bones as is calcium.  With CKD, it’s hard to keep the phosphate levels normal, so you may develop itchiness since the concentration of urea builds up and begins to crystallize through the skin. This is called pruritus.

I have been itchy lately, but since my phosphate levels have never been out of range, I concluded it was just dry skin due to our low to nil humidity here in Arizona.  Maybe it’s not.  We’d been keeping my calcium levels low – but in range – since a bout with kidney stones several years ago. I also definitely stay out of the sun, another source of vitamin D, since a

sun-graphic1pre-cancerous face lesion. I’d had a bone density test recently and that was just fine, but had I been doing all the wrong things for my kidney health in protecting myself from kidney stones and melanoma?

Something was nagging at me about vitamin D, so I turned to the glossary of my book (page 136) and that’s where I found it:

“Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.”

Affects the immune system.  But how?  Science Daily at http://www.sciencedaily.com/releases/2010/03/100307215534.htm provided the answer I sought:

“Scientists have found that vitamin D is crucial to activating our immune defenses and that without sufficient intake of the vitamin – the killer cells of the immune system — T cells — will not be able to react to and fight off serious infections in the body. The research team found that T cells first search for vitamin D in order to activate and if they cannot find enough of it will not complete the activation process.”

How did I miss that?  And how many others knew that vitamin D didn’t just build strong bones as we’d been taught in primary school?

nsaidsI imagine my nephrologist will up my vitamin d dosage when I see him next week, but I still can’t handle the sun or take calcium supplements.  Maybe there’s some food that can provide vast quantities of this vitamin.

But no, according to the National Institutes of Health at http://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/:

“Vitamin D is a fat-soluble vitamin that is naturally present in very few foods, added to others, and available as a dietary supplement.”

Well, I wanted to know what those foods were even if they could only provide 20% of the needed vitamin d at most.  I clearly remembered salmon, tuna, and egg yolks, but what else?  Mushrooms, of course.  And???

I had to turn to the internet for more suggestions. Fit Day at http://www.fitday.com/fitness-articles/nutrition/vitamins-minerals/5-foods-rich-in-vitamin-d.html informs us that milk, cereal, and even orange juice are vitamin d fortified. For me, that’s a joke.  I’m lactose intolerant, don’t like cereal, and o.j. has too much calcium in it.

I like fish, but two to three times a week?  I’m not sure I want to spend my five ounces of protein that way so often during a week.  I don’t care for eggs much, but am willing to eat them once a week just to eat something healthy. Mushrooms are really tasty, but my ¼ cup doesn’t go very far.

You know, just from moving myself to write, it doesn’t seem like such a bad day after all.IMG_0058

Which leads me to a thought I want to share: action is the road out of unhappiness.  I’m sure someone has thought of that before, but I own it now.  To that end, I’m working on The Book of Blogs and two other long time writing projects as well as having committed myself to Landmark Worldwide’s Wisdom Course.

Of course I still take the time to exercise (ugh!), sleep, and rest, but these projects are fun… and they make me happy.  We are capable of so much more than we think we are.

Until next week,

Keep living your life!

How Sweet It Is… Not

bluesYesterday was one of those low energy days for me, but I really wanted to go to Sustainable Blues.  So I did.  I need the socializing and that soulful blues music at least once a week. I lasted for the lesson and one dance past.

But then I got stupid.  You know those cravings for sweets when you’re tired?  CKDers get them, too.  Once in a very great while, this CKDer gives in to those cravings.  (I’m still human, you know.)

And then I pay for it.  My stomach hurts and I need to stay close to what is euphemistically called a restroom in Arizona.

That got me to thinking: what was I doing to my kidneys by giving in to these cravings, even if it were once in a great while?  So I researched it, but first I gathered all the information I already had at my fingertips.

My starting place? What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, of course.  It’s not just a reference for readers, but for me too.sweets

Bingo! On page 32 (Digital readers, the page numbers will not be helpful to you.  Search for the terms, instead), I found an explanation of the A1C:

“This measures how well your blood sugar has been regulated for the two or three months before the test.  That’s possible because the glucose adheres to the red blood cells.”

So what is glucose and why am I including it in a discussion of sugar and the kidneys, you ask?  Turn to page 132 which is part of the glossary.  Here, glucose is defined as:

“The main sugar found in the blood.  In diabetes, the body doesn’t adequately control natural and ingested sugar.”

Aha!  So glucose IS a sugar and it has something to do with diabetes.

Diabetes?  Back to the A1C. You’ve heard me be concerned about my A1C for years.  That’s because below 5.7 is a normal reading.  Above 6.5 is diabetes.  Anything in-between is pre-diabetes.  Guess what my results have been since I’ve been tested for this. Oh, pre-diabetes, you follow me around like a puppy.

Location of KidneysSo why should I be so concerned?  What was happening to my kidneys?

I do remember reading that too much sugar can damage the linings of your blood vessels. This is something you want to avoid when you’re already having problems with your kidneys.  The blood vessels carry your blood throughout your body, even if your impaired kidneys have not properly cleaned the blood.

The National Institutes of Health are really good about keeping information reader friendly and allowing the reproduction of their material.  This simple explanation of what diabetes can do to your kidneys clarified the issue for me and, hopefully, will do the same for you:

“High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.

Healthy%20KidneyUnhealthy%20KidneyNo albumin, a protein, is leaking from the healthy kidney in the top drawing.

Albumin, a protein, is leaking from the unhealthy kidney in the bottom drawing.

You can find even more information at: http://diabetes.niddk.nih.gov/dm/pubs/complications_kidneys/#hurt

In case you’ve forgotten what albumin is, see page 129 in the glossary of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease:

“Albumin: Water soluble protein in the blood.”

This blog is turning into an ode to the book rather than a discussion of the effects of too much sugar on the kidneys of a CKDer! I’ll stop that right now, folks.Book Cover

While too much blood glucose can cause the diabetes which may cause Chronic Kidney Disease, the reverse is true, too.  CKD can have an effect on your diabetes.  If the kidneys are already compromised as far as the part of their job that deals with filtering the blood and now your blood vessel linings are damaged, your body is simply not functioning as it was meant to.

What else can too much sugar do to your body?  According to The Salt at NPR (http://www.npr.org/blogs/thesalt/2013/10/25/240784956/aging-well-keeping-blood-sugar-low-may-protect-memory) it may be affecting your memory more as you age. Agnes Floel of Charite University Medicine in Berlin, the author of a study published in the New England Journal of Medicine last year says,

“It’s possible that blood vessel effects can damage memory. Elevated blood sugar levels damage small and large vessels in the brain, leading to decreased blood and nutrient flow to brain cells….”

And then there’s sleep apnea. According to a recent EurekAlert at http://www.eurekalert.org/pub_releases/2014-04/elf-sal040214.php,

brain“Sleep apnoea has been linked with elevated blood sugar levels, suggesting people with the condition could be at an increased risk of cardiovascular illness and mortality.

The findings of a new study, published online today (3 April 2014) in the European Respiratory Journal, add to a growing body of evidence that suggests that sleep apnoea is linked with diabetes.”

And heart disease!  Let’s not forget heart disease! According to MedpageToday at http://www.medpagetoday.com/Cardiology/Prevention/44114?xid=nl_mpt_DHE_2014-02-04&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g596983d0r&userid=596983&email=myckdexperience@gmail.com&mu_id=5721543,

“People who had excessive amounts of added sugar in their diet carried greater risks of dying from cardiovascular disease (CVD), researchers found.”

The researchers in this case are Quanhe Yang, PhD, of the CDC’s Division for Heart Disease and Stroke Prevention in Atlanta, and her colleagues.

This one’s for women in my age group:

“The most common type of endometrial cancer occurred almost 80% more often in postmenopausal women who regularly consumed sugar-sweetened drinks as compared with women who consumed none, a study found.”

This is another Medpage article that you can find at: http://www.medpagetoday.com/HematologyOncology/OtherCancers/43086?xid=nl_mpt_DHE_2013-11-23&utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&eun=g596983d0r&userid=596983&email=myckdexperience@gmail.com&mu_id=5721543.

I think I just may have frightened myself enough not to succumb to those sweet cravings.  But wait!  Carbohydrates also play a part in diabetes. Oh, but that’s a blog for another day.

New information: Not only is SlowItDown in Washington, D.C. (Georgetown and K St. NW), but also in southern Maryland… Lanham, Beltsville, Clinton, White Plains.  You know classes can be scheduled in other areas, too.  Call us!  We’re starting to feel like the Maytag repairman!!!!SlowItDown business card

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!

Easy, Peasy Cryosurgery

This is the feel good blog, the one to reassure you about a medical procedure.  I have a friend who worries that my blogs scare people… and maybe they do, but they’re meant to be informational – just informational.  Except this one.  This one is definitely meant to be reassuring.happy-woman

With all the medical messes, we’ve had lately (she writes as her chest burns and a headache creeps in) the solution to this one was the safest and quickest. The procedure to correct it is non-invasive, doesn’t enter the body in any way, and – therefore – is totally safe for Chronic Kidney Disease patients.

I know, I know, slow down.  Okay, from the beginning:

Skin cancer is responsible for almost half the cancer cases. According to the American Cancer Society’s “Skin Cancer Facts,” it is expected there will be 76,600 cases of melanoma this year alone. Melanoma, the most dangerous of the skin cancers, has made its unwelcome appearance in my family, so every year – well, it’ll be every six months after this episode – I submit to a full body scan by Dr. Christle J. Layton of Affiliated Dermatology right here in Glendale, Arizona. I say submit because I’m an old fashioned prude these days.  However, she does manage to put me at ease each time.

During this last exam, Dr. Layton found something on my forehead… but it wasn’t cancerous, just precancerous.  That, of course, was enough to get me researching.  Here’s where I insert the usual disclaimer: I am not a doctor, folks, just someone with CKD who doesn’t want to make her kidneys function even less effectively because she unwittingly had some medical procedure she shouldn’t have.

IMG_4813What Dr. Layton found is called actinic keratosis.  This is also called solar keratosis and senile keratosis.  I immediately latched on to the last name for this kind of precancer.  According to http://www.healthy-skincare.com/senile-keratosis.html, “Senile keratosis is essentially a form of solar or actinic keratosis. However, the difference is that the senile form of this skin condition specifically refers to the elderly. Generally, this form of keratoses appears in individuals who are older than 50.”  That’s the second time in one week this 66 year old has been referred to as elderly.  Oh right, don’t get side tracked.

Then I checked solar keratosis and found the following at http://solar-keratosis.com/, an Australian site. “Solar Keratosis (Actinic keratosis) is a common premalignant skin lesion seen on areas of the body that have been exposed to sun. Premalignant means that the lesions have the potential to become skin cancer.”

So, solar, senile and actinic keratosis are the same precancerous condition.  One thing that disturbed me about the information is that while I am light skinned-  and so – prone to this type of precancer, it was on my forehead.  Those of you who know me also know that I always have curls tumbling down across my forehead, including the affected area.  This means it wasn’t exposed to the sun and I avoid the sun at all costs anyway.  This IS Arizona.

I was puzzled and dug further. MedicineNet at http://www.medicinenet.com/actinic_keratosis/page2.htm must have been listening to me.  This is what I found there: new headshot

When patients are diagnosed with this condition, they often say, “But I never go out in the sun!” The explanation is that it takes many years or even decades for these keratoses to develop. Typically, the predisposing sun exposure may have occurred many years ago. Short periods of sun exposure do not generally either produce AKs or transform them into skin cancers.

I do remember being talked into (I didn’t develop this strong personality until later in life) using aluminum foil to make a sun reflector so I could tan as a teen ager.  I was so fair that it never worked.  Come to think of it, no one really knew about the ultraviolet rays of the sun/skin cancer connection at that time.  Did they?

Ready to find out about this painless, quick, non-kidney threatening treatment?  It was cryosurgery, which I’ve discussed before.  The simplest definition is the one I found at WebMD: “Cryosurgery is the process of destroying a skin cancer (lesion) by freezing it with liquid nitrogen. Liquid nitrogen is applied to the lesion using a cotton applicator stick or an aerosol spray.” You can find more information about this at http://www.webmd.com/cancer/cryosurgery-for-nonmelanoma-skin-cancer.

When Dr. Layton was done spraying the area, I asked her what was next.  She started telling me I need to clean the area with soap and water, then pat it dry.  I thought that was an odd answer and asked again.  We both realized at the same time that there was no ‘next’ for this procedure.  It was done.cryosurgery

Sometimes, there’s a blister after the procedure.  If so, I was to use an antibiotic ointment and perhaps a band-aid over the area until the blister dries. I may have a scar.  Good, maybe it’ll balance out all the scars on my arms (carpal tunnel surgery, a crazy very big dog we had, bad attempts at food prep and ironing, etc.).  It may also remain white.  Who cares?  It is under my curls, as I’ve mentioned.

I never experienced the burning sensation or pain that others might in the first 24 hours.  It, well, spidey tingled. Whoops!  I think I’m aging myself again.

I am relieved and gratified that this was so simple.  I’m also gratified that European sales of the book are doing so well.  Please spread the word that if you have EVER bought a print copy of the book on Amazon, you can now buy the digital edition for only $2.99 instead of the regular $9.95.Book Cover

I have been sick for ever, or maybe it’s more like 10 days, and have had to cancel attending numerous events (like SlowItDown’s kidney education class on the Salt River Pima – Maricopa Indian Community,  some Landmark events and classes,  appointments with friends).  The world didn’t end.  Lesson learned: rest when you need to; the world will be waiting when you get back.  Thank you to our children and neighbors for coming to our rescue when we just couldn’t do for ourselves, to the EMTs when Bear’s fever was out of control, and to those who kept my spirit up via texts and Facebook posts.  It got us through!

Has anyone ever read an advice column called Dear Annie?

Until next week,

Keep living your life!

Just What The Devil Does Precancerous Mean?

I had this week’s topic all picked out, half my research done, and was chomping at the bit to start writing when the phone rang. I’d already been interrupted several times by Bear who just had foot surgery and couldn’t get around much.  I’d expected those interruptions, and was more than glad to help my sweet Bear with whatever he needed.Bear's foot

But the phone?  What made me pick it up?  I know how to let calls go right to voice mail if I need the time to finish whatever I’m working on.

It was the office of my dermatologist, Dr. Crystal Layton of Affiliated Dermatology here in Phoenix, a soothing, easy to talk to doctor. They had the results of the two shave biopsies on suspicious lesions I’d recently had during my annual full body scan.  (The second definition of lesion at The Free Online Dictionary at http://www.thefreedictionary.com/lesion is “A localized pathological change in a bodily organ or tissue.”)

The Mayo Clinic at http://www.mayoclinic.com/health/biopsy/CA00083/NSECTIONGROUP=2 explains a shave biopsy, the kind I’d had:  “During a shave biopsy, the doctor uses a tool similar to a razor to scrape the surface of your skin.”

shaveDr. Layton wanted me to know the as yet still unhealed biopsy site on my right forearm was benign.  Yay!  But wait.  The one on my forehead, the one I’d laughingly referred to as the hole in my head, was precancerous.

Just in case you need to know what happens to the biopsy material once it’s been collected, according to http://www.webmd.com/cancer/what-is-a-biopsy?page=2

“After the tissue is collected and preserved, it’s delivered to a pathologist. Pathologists are doctors who specialize in diagnosing conditions based on tissue samples and other tests. (In some cases, the doctor collecting the sample can diagnose the condition.)

pathologistA pathologist examines the biopsy tissue under a microscope. By noting the tissue cells’ type, shape, and internal activity, in most cases a pathologist can diagnose the problem.”

I knew that and I knew what a shave biopsy was and I knew what a lesion was and I still felt my stomach drop.  I also knew ‘pre’ didn’t mean cancerous, but there was cancer in the word.  We probably all know that ‘pre’ means before (from the Latin for prior).  Did that mean cancer was my inevitable future? Or my probable future if I didn’t do something about it?

Split second decision on my part.  “So, what do we do about that?” I asked, although I think I already knew the answer. The procedure is called cryosurgery (I can’t resist: cryo comes from the Greek for cold or frost.  Perfect!) which Dr. Layton’s medical group defines as “the treatment of lesions with the application of a cold substance.  In most case, liquid nitrogen is used to destroy the lesion.”cryosurgery

I made my appointment, ran to tell Bear of yet another one of those medical problems that seem to be ganging up on us lately, and came right back to my office to blog… and research.

How did this happen?  I’d had biopsies before but they were based on suspicious looking moles and were always benign.  I needed a source I trusted, so I went to Johns Hopkins Medical Library at: http://www.hopkinsmedicine.org/healthlibrary/conditions/skin_cancer/actinic_keratosis_a_precancerous_condition_85,P01335/ so, it was actinic keratosis we were dealing with this time.

What was that?  This is their definition:

“Actinic keratosis can be the first step in the development of squamous cell skin cancer, and, therefore, is considered a precancerous skin condition. The presence of actinic keratoses indicates that sun damage has occurred and that skin cancer can develop.”

I’m an optimist.  Notice the CAN in the definition?  That’s what I’m banking on.  That and the hope that my dermatologist can burn it all out so that it doesn’t get the chance to develop.

As for squamous cell, I needed help with that, too. I found it at http://www.skincancer.org/skin-cancer-information/squamous-cell-carcinoma.

“Squamous cell carcinoma (SCC) is an uncontrolled growth of abnormal cells arising in the squamous cells, which compose most of the skin’s upper layers (the epidermis). SCCs often look like scaly red patches, open sores, elevated growths with a central depression, or warts; they may crust or bleed. SCC is mainly caused by cumulative UV exposure over the course of a lifetime. It can become disfiguring and sometimes deadly if allowed to grow. An estimated 700,000 cases of SCC are diagnosed each year in the US, resulting in approximately 2,500 deaths.”Squamous-Cell-Carcinoma-in-Situ

The only risk factors I’d had were that I’d been fair skinned (I did notice my skin tone had darkened in the past decade since my move to Arizona) and I didn’t wear a hat.  I hadn’t thought I needed one since my curly dark hair always tumbled over my forehead thereby – or so I thought – protecting it from the sun’s rays.

I figured I’d better check this out to see if cryosurgery could have any effect on my kidneys.  I doubted it, but then I hadn’t known how dangerous the fluoride in toothpaste was either. I used the search term ‘liquid nitrogen’ since that’s what will be used for the cryosurgery I’ll be having.

While I may have scarring, there seem to be no indications that this substance enters the skin or blood stream much less that it exits the body via the kidneys.  Can’t exit if it never enters, right?

As for the scars, who cares?  I already have a scar on my forehead from a previous shave biopsy in this exact spot about eight years ago. That one came back benign.  Things change; be vigilant!

1395242_10202162033990289_511259525_nSince we’ve been absorbed with Bear’s surgery for the last week, there’s nothing to report on either book sales or SlowItDown.  The big news is that Nima, my daughter and computer guru, is in the process of adding a media and press page to this blog.  Thank you, Nima, for doing your best to keep me current.  I know I don’t make it easy.

Until next week,

Keep living your life!

Deodorant Doubts

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Statins: No Easy Decision Here

A reader asked me to write about this topic.  Like me, she is a woman in her middle sixties who takes statins.  Unlike me, she has had adverse side effects.  Who even remembered about these?

Of course, I read the information handout the pharmacy attaches to the bag containing your prescription.  Of course, I researched this drug on the internet when it was first prescribed for me. But that was years ago and, while I periodically re-read the pharmacy’s handout, the dangers of this drug never quite resonated with me.

Dangers?  With statins?  That’s most people’s reaction.statins

Let’s go back to the beginning with an explanation of what statins are and what they do. According to MedicineNet.com at http://www.medicinenet.com/statins/article.htm,

“’Statins’ is a class of drugs that lowers the level of cholesterol in the blood by reducing the production of cholesterol by the liver. (The other source of cholesterol in the blood is dietary cholesterol.) Statins block the enzyme in the liver that is responsible for making cholesterol.”

Makes sense.  But what’s cholesterol? Medical News Today at http://www.medicalnewstoday.com/articles/9152.php tells us,

“Cholesterol is a lipid (fat) which is produced by the liver. Cholesterol is vital for normal body function. Every cell in our body has cholesterol in its outer layer.”

Okay, so we need this particular lipid but sometimes – between the foods we eat and our body’s functioning – we produce too much of it. Then it may stick to our arteries as plaque, possibly narrowing or even blocking them.  This could lead to CAD or coronary artery disease (heart problems).

liverHere’s the important part for Chronic Kidney Disease sufferers: it’s the liver – the organ that produces cholesterol – that is affected by the statins. That’s the only other filtering system your body has and your kidneys are already compromised.  TWO compromised filtering systems seems like a really poor idea to me.  Yet, sometimes, we need to take statins.

I went to my favorite, The Mayo Clinic, at http://www.mayoclinic.com/health/statins/CL00010 for information about when you need to be on a statin:

“If you have high cholesterol, meaning your total cholesterol level is 240 milligrams per deciliter (mg/dL) (6.22 millimoles per liter, or mmol/L) or higher, or your low-density lipoprotein cholesterol (LDL, or “bad” cholesterol) level is 130 mg/dL (3.37 mmol/L) or higher, your doctor may recommend you begin to take a statin. But the numbers alone won’t tell you or your doctor the whole story.

If the only risk factor you have is high cholesterol, you may not need medication because your risk of heart attack and stroke could otherwise be low. High cholesterol is only one of a number of risk factors for heart attack and stroke. “

As CKD patients, we already have another risk factor.  If, like me, those numbers mystify you, you can find them on your quarterly blood test reports which will usually have an “H” to indicate high or “L” to indicate low (You won’t find that if you’re on statins.) next to the numbers for your total cholesterol and your low-density lipoprotein levels.

As for how hyperlipidemia (high cholesterol) can affect your body and why statins are prescribed, I took a look at a non-technical explanation at  http://heartdisease.about.com/cs/cholesterol/a/statins.htm:

“Clinical studies have shown that statins significantly reduce the risk of heart attack and death in patients with proven coronary artery disease (CAD), and can also reduce cardiac events in patients with high cholesterol levels who are at increased risk for heart disease. While best known as drugs that lower cholesterol, statins have several other beneficial effects that may also improve cardiac risk, and that may turn out to be even more important than their cholesterol-reducing properties.”

Well, that all sounds good so what’s the problem?  It’s the side effects, ladies and gentlemen.  It’s all the ‘may cause’ that you find on the websites and in your pharmacy handout information.confused

I went to a new site for me, http://statinseffects.org/, and was staggered by the side effects:

“The risk of liver & kidney damage, muscle damage, increased risk of cancer & other side effects of cholesterol lowering drugs are good reason why exercise & diet should be patient’s first resort for controlling cholesterol levels. For people who must take cholesterol lowering medications, the dose needs to be reduced to minimum by again exercise & diet. The main concern seems to be the overuse or underuse of the medication, despite of the evidence that high cholesterol level itself is not the most important factor of heart disease. It is, however, the ratio between total & HDL cholesterol levels.”

You KNOW what popped out at me: kidney damage.  We already have kidney damage.  Each of these side effects deserves a blog of its own.  But, it is important to remember that these are possible, not definite, side effects.

Am I endorsing statin use for hyperlipidemia? No, I’m not.  I’m not a doctor.  You need to discuss this with your doctor. Mine at the time of my diagnose with hyperlipidemia was amenable to my desire not to take the drugs for a while.

Dr. Susan Bennett, agreed to this in an attempt to demonstrate to me that I needed the medication.  This was about six years before I was diagnosed with CKD.  For three months – the acknowledged honeymoon period – my numbers were great.  And then they started to climb… and climb, despite the dietary changes and exercise.  I am just one of those unlucky ones with naturally high cholesterol. Try this for yourself if your doctor agrees, but keep your health foremost in your mind.exercising silhouette

Talking about that, SlowItDown held our first of ten monthly Chronic Kidney Disease education classes on The Salt River Pima – Maricopa Indian Community last Thursday. Talk about a gratifying experience!  In addition, the book is now being used by a spiritual healing and medical care group in the community.

Many thanks to Annette Folmer of DaVita for the ever higher quality of her teaching and to MaryAnn Bennett, the brand new Clinical Services Manager at Salt River Pima-Maricopa Indian Community. Our classroom was even more electronically modern than the ones I’ve taught in here in Arizona’s community colleges!

Until next week,

Keep living your life!Book Cover

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,The Table

Keep living your life!

Let The Sun Shine…

Here we are in lovely, warm, sunny Florida.  But you just left lovely, warm, sunny Arizona, you may say and you’d be right.  We’re here to see family and friends, one of whom is over 65 and has dropped over 60 pounds via exercise and diet.  Jo is my inspiration!

I’ve wanted Bear to meet my brothers for a bunch of years now. This is an opportunity for him to meet one of them, Paul Peck, and his gracious wife, Judy.  Come to think of it, I haven’t seen them since Abby’s college graduation.

Then there’s my New York cousin, Nina Peck and her partner, Sandra, who just happened (ha ha) to move five minutes away from my brother.  That’s another one I haven’t seen in a bunch of years.

Of course, I get to bring the book to Florida, too.  Some of the medical departments of the colleges there are following me on Twitter, but I don’t think any clinics or private sector doctors are.  Good, another way for me to spread the word. The Table

Oh, right, hot weather and CKD. The rules for CKD patients in potentially hot weather are the same anywhere in the world.

According to Dr. Leslie Spry, a National Kidney Foundation spokesperson, “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

We don’t worry about humidity in Arizona, but this is Florida.  No disrespect meant, but I clearly remembering telling my mother, Belle Peckolick, that Florida felt like taking a shower and not drying off.  She was living there at the time and just laughed.  She’d been a New Yorker, so the humidity was a higher dose of what she was used to.

Now’s the time to wear the hat you (meaning I) bought for just that purpose, but forgot was in the trunk of the car.  Otherwise, melanoma just might be a possible drawback of a day in the sun.  Melanoma.com tells us,

“Melanoma is the most serious type of skin cancer. It begins in skin cells called melanocytes. Though melanoma is predominantly found on the skin, it can even occur in the eye (uveal melanoma).

Melanocytes are the cells that make melanin, which gives skin its color. Melanin also protects the deeper layers of the skin from the sun’s harmful ultraviolet (UV) rays.

melanomaWhen people spend time in the sunlight, the melanocytes make more melanin and cause the skin to tan. This also happens when skin is exposed to other forms of ultraviolet light (such as in a tanning booth). If the skin receives too much ultraviolet light, the melanocytes may begin to grow abnormally and become cancerous.”

You are not only heating up your body by being out in hot weather, but exposing yourself to the sun’s ultraviolet light. Use that hat to shade some of your body.

DaVita reminds us to use sunscreen with at least 15 spf.  Don’t forget if you’re swimming – which this aqua-phobe won’t be although I’m looking forward to walking on the beach – you need to slather more on after each dip. You can read more of their hot weather tips, some for dialysis patients, at http://www.davita.com/kidney-disease/overview/living-with-ckd/seven-summertime-precautions-for-people-with-kidney-disease/e/4894

You know you need to drink water during hot weather, but is there a difference among waters?  Yes, there is.  As a CKD patient, your fluid intake is probably restricted (mine is 64 oz. which includes coffee, tea, juice, ice cream, sherbet, and Jell-O.  You get the picture: anything liquid or liquid in a frozen or jelled form.)

Mary Ellen Herndon, a renal nutritionist warns us, “Many drinks labeled as water are loaded with sugar and empty calories. Even though these drinks have ‘water’ in their name, drinking them regularly may cause weight gain and may increase your risk of obesity.”  For the rest of the article, go to http://www.kevinmd.com/blog/2012/08/6-tips-choosing-water-drink.html?utm_medium=twitter&utm_source=twitterfeed

According to WebMD at http://www.webmd.com/a-to-z-guides/chronic-kidney-disease-home-treatment, we also need to be careful about exercising during the hot weather.  I don’t mean stop, simply make certain you are not becoming dehydrated.  Stay away from energy drinks!  As an older adult, I’ve become aware that I can dehydrate more easily when I exercise – especially since my kidneys are not working at top capacity.

Don’t be intimidated by the sun.  We can benefit from the sun if we’re cautious about it. Fifteen minutes or so a day of sunshine can elevate your vitamin D naturally.  Wearing a shirt to cover some of your body can help you protect yourself from the ultraviolet rays while you’re indulging in some free vitamin D production.

Be sure to protect your eyes, too.  This is a direct quote from the DaVita site mentioned above: “Sunglasses protect your eyes in the same way that sunscreen protects your skin from harmful sun damage. Your sunglasses should block at least 99% of UVB rays and 50% of UVA rays. Wraparound sunglasses and other styles that completely cover the eyes are best.” This information is good for anyone, chronic kidney disease sufferer or not.wraparound sunglasses

Excuse me while I see if I can interest any of my friends or family into visiting Epcot with  me.

Until next week,

Keep living your life!

Read, Read, Read

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

                                    

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

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

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

 

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

                                     physician  agree with me.

                                  

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

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

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

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

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

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

                                 see them immediately.

 

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

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

Opening MDs’ Notes to Patients Wins Support

By David Pittman, Washington Correspondent

Published: October 13, 2012

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

You can read the rest of this one at:

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

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

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

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

The other article that caught my eye was this one:

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

My Turn For A Biopsy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

It is exhausting writing about your own health issues!

Until next week,

Keep living your life!

This One’s For Cheryl… And Amy… And…

It’s true, the world is a sadder place these days.  Two dynamic women have lost their lives to cancer this week, and both of them touched me.  One fought valiantly until there was nothing more to fight with. One didn’t. The end result is they’re both gone.  The cause of their deaths? Cancer.

I simply accepted that Cheryl Cook Vincent and I would grow to be outrageous old ladies together.  Now my partner in crime is no more and I am so sad. I cannot think of a single purpose her death served.

Or maybe I can. Let’s take a little detour from the usual ckd related material and talk about cancer.  It’s my way of honoring both Cheryl and my cousin, Amy Bernard-Herman.

Cancer is defined by the World English Dictionary as, “any type of malignant growth or tumour, caused by abnormal and uncontrolled cell division: it may spread through the lymphatic system or blood stream to other parts of the body.”

One of these women went to her doctors regularly; the other hadn’t been in decades. Had she gone, she would have been told pretty much the same as the one who did.  Cancer is treatable in the early stages, sometimes even curable as with skin cancer, the most common form of cancer.  Sometimes, it is not as with some breast cancer which is the second leading cause of cancer deaths in women. For men, the second leading cause of cancer is prostate cancer.

It seems that cancer really covers over one hundred different diseases rather than just being a disease all by itself according to medterms (http://www.medterms.com/script/main/art.asp?articlekey=2580). Even though it may appear in different parts of the body once it’s metastasized (spread), it’s referred to by the site where the tumors first appeared.  For example, back in 1988, my father died of pancreatic cancer.  The cancer had metastasized throughout his body by the time he died, but it was still referred to as pancreatic cancer.

Being an English teacher and a writer, I wanted to know why it’s called cancer. I found the most informative answer to my question at: http://wiki.answers.com/Q/Why_is_the_disease_cancer_called_cancer. Basically, the tumors themselves have a crab like appearance.  In the zodiac, the crab is called cancer. I enjoyed the etymology more than I should have, but that’s my ‘thing’ so I won’t bore you with it here.

Colon cancer caused Cheryl’s death, directly or not. How could she have known she had this disease? According to the Mayo Clinic, these are the symptoms (although the disease may be asymptomatic in the early stages in which case a colonoscopy would have detected it):

  • A change in your bowel habits, including diarrhea or constipation or a change in the consistency of your stool
  • Unexplained weight loss
  • Rectal bleeding or blood in your stool
  • Persistent abdominal discomfort, such as cramps, gas or pain
  • A feeling that your bowel doesn’t empty completely
  • Weakness or fatigue

Their address for more colon cancer information is: http://www.mayoclinic.com/health/colon-cancer/DS00035.

You may need a reminder as to just what these parts of the body are.  According to WebMD, who also provided the picture, the colon is the last part of the digestive system.  This is where fluid, salt, and some nutrients are removed from your body’s wastes as the digestive process occurs.  Peristalsis, or the movement of the muscles lining the colon, helps with this.  You can read more about this at: http://www.webmd.com/colorectal-cancer/default.htm.  The rectum is the last four inches of the colon, ending with the anus.

Cancer has stages just as CKD does. MedicineNet has a better explanation of just what this is and why it’s done than I could have come up with: “The stage of a cancer is a measure of the extent to which a cancer has spread in the body. Staging involves evaluation of a cancer’s size and its penetration into surrounding tissue as well as the presence or absence of metastases in the lymph nodes or other organs. Staging is important for determining how a particular cancer should be treated… cancer therapies are geared toward specific stages. Staging of a cancer also is critical in estimating the prognosis of a given patient, with higher-stage cancers generally having a worse prognosis than lower-stage cancers.”  They are on the internet at: www.MedicineNet.com.  You’d have to know which type of cancer you are dealing with since there is no general cancer site at this address.

Cheryl told me she could never do what I did.  She was talking about researching my diagnosis, writing a book about it, and urging all others with chronic kidney disease to pay attention to their condition.

After having to research each sentence of this blog, I see what she meant. It was heart wrenching.

And I never got to tell my most excellent buddy that I was able to raise my eGFR from 50 to 60 in just three months. She would get so excited about good medical news for me whether she understood it or not.

Rest in peace Cheryl… and Amy… and every other person who has died of cancer.

To those of you who remain behind, I offer you every bit of good energy I can find. After all, if we’re not here to help each other, why are we here?

No book news today, folks.

Until next week,

Keep living your life – for yourself and those around you.

Published in: on October 15, 2012 at 11:13 am  Comments (5)  
Tags: , , , , , , , ,