How Will They Know?

Let’s start this month with a guest blog by American Medical Alert IDs. Why? Although I am not endorsing this particular brand, because I clearly remember being give Sulphur drugs in the Emergency Room when I was by myself and unable to let the medical staff there know I have Chronic Kidney Disease. Why? Because I remember that my husband fell when I was out of town. His grown children took him to the emergency room but didn’t know about his latex allergy and he was in no condition to explain.

 

Everything You Need To Know About Medical Alert IDs for Chronic Kidney Disease


Are you debating on getting a medical alert ID for chronic kidney disease? It’s time to take the confusion out of choosing and engraving a medical ID. This post will show you everything you need to know so you can enjoy the benefits of wearing one.

Why Kidney Patients Should Wear a Medical Alert ID

A medical ID serves as an effective tool to alert emergency staff of a patient’s special care needs, even when a person can’t speak for themselves. When every second counts, wearing a medical ID can help protect the kidney and safeguard its remaining function.

In emergencies, anyone diagnosed with chronic kidney disease or kidney failure may require special medical attention and monitoring. It is important that patients are able to communicate and identify their medical condition at all times. This includes individuals who are:

  • Undergoing in-center hemodialysis
  • Undergoing home hemodialysis
  • On Continuous Ambulatory Peritoneal Dialysis (CAPD)
  • On Continuous Cycling Peritoneal Dialysis (CCPD)
  • Transplant recipients
  • Diagnosed with diabetes

Delays in getting the proper treatment needed for chronic kidney disease may lead to the following complications:

  • Fatal levels of potassium or hyperkalemia. This condition can lead to dangerous, and possibly deadly, changes in the heart rhythm.
  • Increased risk of peritonitis or inflammation of the membranes of the abdominal wall and organs. Peritonitis is a life-threatening emergency that needs prompt medical treatment.
  • Anemia or decreased supply in red blood cells. Anemia can make a patient tired, weak, and short of breath.
  • Heart disease, heart attack, congestive heart failure, and stroke
  • High blood pressure which can cause further damage to the kidneys and negatively impact blood vessels, heart, and other organs in the body.
  • Fluid buildup in the body that can cause problems with the heart and lungs.

According to Medscape, the most common cause of sudden death in patients with ESRD is hyperkalemia, which often follows missed dialysis or dietary indiscretion. The most common cause of death overall in the dialysis population is cardiovascular disease; cardiovascular mortality is 10-20 times higher in dialysis patients than in the general population.

Kidney Patients Who Wear a Medical ID Have 62% Lower Risk of Renal Failure

In a study of 350 patients, primarily in CKD stages 2 through 5, those who wore a medical ID bracelet or necklace had a 62% lower risk of developing kidney failure, based on eGFR. Wearing a medical-alert bracelet or necklace was associated with a lower risk of developing kidney failure compared with usual care.

Wearing a medical ID can serve as a reminder to look after your health and make the right choices such as taking medication on time and sticking to proper diet.

6 Things to Engrave on Kidney Disease Medical ID

A custom engraved medical alert jewelry can hold precise information that is specific to the wearer’s health condition. Here are some of the most important items to put on a chronic kidney disease or kidney failure medical ID:

  • Name
  • Medical information – including if you have other medical conditions such as diabetes or high blood pressure
  • Stage of CKD or kidney function
  • Transplant information
  • Current list of medicines
  • Contact person

Some patients have a long list of medications that may not fit on the engraved part of an ID. An emergency wallet card is recommended to use for listing down your medicines and other information or medical history.

 

Click here to enlarge chronic kidney disease infographic

Do you wear or carry a form of medical identification with you? Please share your experience or tips with us by posting a comment.

Ready for a new topic? All right then. Ever have a problem drinking your coffee? I know I have… until I followed these tips from the Cleveland Clinic at https://health.clevelandclinic.org/coffee-giving-you-tummy-trouble-try-these-low-acid-options/:

Here’s hoping that next cup of coffee treats you well.

Until next week,

Keep living your life!

 

More Time to Learn

I don’t think I’ve ever felt this tired in my life. Cancer does that… and it leaves me a lot of time in bed to explore whatever I’d like to on the internet. So now I’m discovering all these – what’s the word? – possibly peripheral? diseases that affect the kidneys. For example, while I don’t have the energy to post a new Chronic Kidney Disease picture on Instagram every day, I do check the site daily and like what appeals to me and learn from what’s new to me.

That’s where I noticed posts about Bartter syndrome. If you’re like me, you want to know about something you’ve never heard of before. Let’s explore this together.

I went directly to my old friend, MedlinePlus, which is part of the U.S. National Library of Medicine at https://medlineplus.gov/ency/article/000308.htm for a definition and the causes:

“Bartter syndrome is a group of rare conditions that affect the kidneys.

Causes

There are five gene defects known to be associated with Bartter syndrome. The condition is present at birth (congenital). The condition is caused by a defect in the kidneys’ ability to reabsorb sodium. People affected by Bartter syndrome lose too much sodium through the urine. This causes a rise in the level of the hormone aldosterone, and makes the kidneys remove too much potassium from the body. This is known as potassium wasting. The condition also results in an abnormal acid balance in the blood called hypokalemic alkalosis, which causes too much calcium in the urine.”

It looks like there are a few terms here we may now be familiar with. Let’s take a look at aldosterone. The Hormone Health Network from the Endocrine Society at https://www.hormone.org/hormones-and-health/hormones/aldosterone tells us:

“Aldosterone is produced in the cortex of the adrenal glands, which are located above the kidneys…. Aldosterone affects the body’s ability to regulate blood pressure. It sends the signal to organs, like the kidney and colon, that can increase the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine. The hormone also causes the bloodstream to re-absorb water with the sodium to increase blood volume. All of these actions are integral to increasing and lowering blood vessels. Indirectly, the hormone also helps maintain the blood’s pH and electrolyte levels.”

And hypokalemic alkalosis? What is that? Healthline at https://www.healthline.com/health/alkalosis#types  gave me the answer: “Hypokalemic alkalosis Hypokalemic alkalosis occurs when your body lacks the normal amount of the mineral potassium. You normally get potassium from your food, but not eating enough of it is rarely the cause of a potassium deficiency. Kidney disease, excessive sweating, and diarrhea are just a few ways you can lose too much potassium. Potassium is essential to the proper functioning of the:

  • heart
  • kidneys
  • muscles
  • nervous system
  • digestive system”

Hmmm, so kidney disease can cause you to lose too much potassium, which can then interfere with the proper functioning of your kidneys. Doesn’t sound good to me. But, remember that the condition is congenital and will show up at birth.

Let’s say it does. Then what? According to Verywellhealth at https://www.verywellhealth.com/bartter-syndrome-2860757:

“Treatment of Bartter syndrome focuses on keeping the blood potassium at a normal level. This is done by having a diet rich in potassium and taking potassium supplements if needed. There are also drugs that reduce the loss of potassium in the urine, such as spironolactone, triamterene, or amiloride. Other medications used to treat Bartter syndrome may include indomethacin, captopril, and in children, growth hormone.”

Food rich in potassium? I’m sure bananas came directly into your mind but there are others. I chose to use the National Kidney Foundation’s list of high potassium foods at https://www.kidney.org/atoz/content/potassium since this is a blog about CKD.What foods are high in potassium (greater than 200 milligrams per portion)? The following table lists foods that are high in potassium. The portion size is ½ cup unless otherwise stated. Please be sure to check portion sizes. While all the foods on this list are high in potassium, some are higher than others.

High-Potassium Foods
Fruits Vegetables Other Foods
Apricot, raw (2 medium) dried (5 halves) Acorn Squash Bran/Bran products
Avocado (¼ whole) Artichoke Chocolate (1.5-2 ounces)
Banana (½ whole) Bamboo Shoots Granola
Cantaloupe Baked Beans Milk, all types (1 cup)
Dates (5 whole) Butternut Squash Molasses (1 Tablespoon)
Dried fruits Refried Beans Nutritional Supplements: Use only under the direction of your doctor or dietitian.
Figs, dried Beets, fresh then boiled
Grapefruit Juice Black Beans
Honeydew Broccoli, cooked Nuts and Seeds (1 ounce)
Kiwi (1 medium) Brussels Sprouts Peanut Butter (2 tbs.)
Mango(1 medium) Chinese Cabbage Salt Substitutes/Lite Salt
Nectarine(1 medium) Carrots, raw Salt Free Broth
Orange(1 medium) Dried Beans and Peas Yogurt
Orange Juice Greens, except Kale Snuff/Chewing Tobacco
Papaya (½ whole) Hubbard Squash
Pomegranate (1 whole) Kohlrabi
Pomegranate Juice Lentils
Prunes Legumes
Prune Juice White Mushrooms, cooked (½ cup)
Raisins Okra
Parsnips
Potatoes, white and sweet
Pumpkin
Rutabagas
Spinach, cooked
Tomatoes/Tomato products
Vegetable Juices”

I also have a list of food sensitivities, so I avoid those foods. If you do, too, you might want to cross those foods off your high potassium foods list if you just happen to have Bartter syndrome.

Time for a few personal notes here. Thank you all for your well wishes and good cheer. Via a clinical trial, I have been able to shrink the pancreatic cancer tumor by two thirds and bring my blood tumor marker down to BELOW normal. This raises my chances for a successful Whipple surgery from 50% to 70% and that’s before another round of chemotherapy with radiation added. Hopeful? You bet! I also wanted to remind you that the SlowItDownCKD series makes a wonderful graduation, wedding, and Father’s Day gift for those new to Chronic Kidney Disease, those not new to Chronic Kidney Disease, and those who would like to share CKD with others in their lives.

Until next week,

Keep living your life!

A Different Kind of Fatigue

Busy with the holidays? Chanukah has passed, but we still have Christmas, Kwanzaa, and the New Year coming up. Feeling like you’re just too tired to deal with them? Maybe even fatigued? What’s the difference, you ask. Let’s go to Reuters at https://www.reuters.com/article/us-fatigued-tired-s-idUSCOL75594120070207 for the answer:

“’People who are tired,’ Olson [Dr. Karin Olson, with the faculty of nursing at the University of Alberta] explained, ‘still have a fair bit of energy but are apt to feel forgetful and impatient and experience muscle weakness following work, which is often alleviated by rest.

People who are fatigued, on the other hand, experience difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, and increased sensitivity to light. They also may skip social engagements once viewed as important to them.’”

Got it. When I was describing how tired I was to another caretaker, her suggestion was to have my adrenals checked. Hmmm, what does that have to do with Chronic Kidney Disease I wondered. Let’s find out.

First of all, what and where are the adrenals? As I reported in SlowItDownCKD 2016,

“According to Reference.com, a new site for me at https://www.reference.com/science/function-adrenal-gland-72cba864e66d8278:

“Adrenal glands are triangular-shaped, measure approximately 1.5 inches high and 3 inches long and are composed of two parts, according to Johns Hopkins Medicine. The outer part is the adrenal cortex, which creates cortisol, aldosterone and androgen hormones. The second part is the adrenal medulla, which creates noradrenaline and adrenaline.

Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body. Aldosterone helps regulate sodium and potassium levels, blood volume and blood pressure. Androgen hormones are steroid hormones that are converted to female or male hormones in other parts of the body.

Noradrenaline helps regulate blood pressure, increasing it during times of stress, notes Endocrineweb. Adrenaline is often associated with the adrenal glands, and it increases the heart rate and blood flow to the muscles and the brain.”

Okay then, is adrenal fatigue exactly what it sounds like? According to Dr. James L. Wilson at http://adrenalfatigue.org/what-is-adrenal-fatigue/:

“Adrenal fatigue is a collection of signs and symptoms, known as a syndrome, that results when the adrenal glands function below the necessary level. Most commonly associated with intense or prolonged stress, it can also arise during or after acute or chronic infections, especially respiratory infections such as influenza, bronchitis or pneumonia. As the name suggests, its paramount symptom is fatigue that is not relieved by sleep but it is not a readily identifiable entity like measles or a growth on the end of your finger.

You may look and act relatively normal with adrenal fatigue and may not have any obvious signs of physical illness, yet you live with a general sense of unwellness, tiredness or ‘gray’ feelings. People experiencing adrenal fatigue often have to use coffee, colas and other stimulants to get going in the morning and to prop themselves up during the day.”

I still wanted to know what the connection to CKD was. LiveStrong at https://www.livestrong.com/article/139350-adrenal-glands-kidneys/ had the following to say about the connection:

“Blood Pressure

The adrenals and kidneys also work together to regulate blood pressure. The kidneys make renin, which is a chemical messenger to the adrenals. The renin put out by the kidneys signals the adrenals to make three hormones: angiotensin I, angiotensin II and aldosterone. These hormones regulate fluid volumes, vascular tension and sodium levels, all of which affect blood pressure.

Prednisone

Many kidney patients take prednisone to minimize the amount of protein spilled into the urine by the kidneys. Prednisone also has a powerful effect on the adrenal glands.

Prednisone acts as a corticosteroid, just like the ones produced by the adrenals. When patients take prednisone, the adrenals cease producing corticosteroids. When patients stop taking prednisone, they gradually taper the dosage down to give the adrenal glands the opportunity to ‘wake up’ and start producing corticosteroids again”.

I don’t take prednisone and my blood pressure is under control via medication. Where does this leave me… or you if you’re in the same situation?

I went to WebMD at https://www.webmd.com/a-to-z-guides/adrenal-fatigue-is-it-real#1 for more information.

“Your body’s immune system responds by slowing down when you’re under stress. Your adrenal glands, which are small organs above your kidneys, respond to stress by releasing hormones like cortisol. They regulate your blood pressure and how your heart works.

According to the theory, if you have long-term stress (like the death of a family member or a serious illness), your adrenal glands can’t continuously produce the extra cortisol you need to feel good. So adrenal fatigue sets in.”

This makes sense to me, although adrenal fatigue is not accepted by the Endocrine Society as a diagnose and there are warnings that accepting it as one may mask another problem (read disease) with the same symptoms. I am a caretaker as well as a CKD patient. I am under constant stress even when I’m sleeping. You’ve heard of sleeping with one eye open? I sleep with one ear open, but I do sleep so I can rule out tiredness.

While writing this blog has helped me understand what adrenal fatigue is and how it might affect me, I’m still going to keep my cardiology appointment to explore why my blood pressure is often ten points higher in one arm than another. That’s also a possible heart problem. Maybe adrenal fatigue is affecting how my heart is working … or maybe it’s a blockage somewhere. Why take a chance?

In the meantime, I intend to partake of as many of those holiday party invitations as I can. I can always come home early if I have to or I can rest before they start. Here’s hoping you do the same whether or not you think you have adrenal fatigue.

Oh, there’s still plenty of time to order any of my books on Amazon.com or B&N.com in time for the remaining holidays. There are links to the right of the blog for the kidney books. Click on these links for the fiction: Portal in Time and Sort of Dark Places.

Until next week,

Keep living your life!

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

Until next week,

Keep living your life!

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Something Else I Didn’t Know

One of the members of a Facebook Chronic Kidney Disease support group and I got into a bit of give and take about last week’s blog. It started with one topic and, as conversations are wont to do, ended up being about something entirely different: mgus. This is what I ended up responding:

“I don’t know mgus, either. I think the only way I can be of any help to you is to suggest you speak with your renal nutritionist and make sure she knows you also have mgus. Sorry! Hmmm, maybe I should learn about mgus and blog about it.”

As the week went on, I realized there was no “maybe” about it. So let’s learn about mgus together.

According to my old time favorite The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362, mgus is:

“Monoclonal gammopathy of undetermined significance (MGUS) is a condition in which an abnormal protein — known as monoclonal protein or M protein — is in your blood. The protein is produced in a type of white blood cell (plasma cells) in your bone marrow.

MGUS usually causes no problems. But sometimes it can progress over years to other disorders, including some forms of blood cancer.

It’s important to have regular checkups to closely monitor monoclonal gammopathy so that if it does progress, you get earlier treatment. If there’s no disease progression, MGUS doesn’t require treatment.”

Whoa! Looks like we need a lot of backtracking here. Let’s start with monoclonal. We know ‘mono’ means one and the ‘al’ at the end of the word means of or about. Now let’s deal with the unknown: ‘clon’. Dictionary.com at http://www.dictionary.com/browse/clone tells us it’s really clone (which you’ve probably already guessed) and means:

  1. a cell, cell product, or organism that is genetically identical to the unit or individual from which it was derived.
  2. a population of identical units, cells, or individuals that derive from the same ancestral line.

Oh, clone… as in Dolly, the sheep back in Scotland in 1995. Got it.

And gammopathy? That ‘o’ in the middle is just a connective so we’re really dealing with ‘gamm’ and ‘pathy’. You probably already know ‘pathy’. The Free Dictionary at https://www.thefreedictionary.com/-pathy offers a few definitions.

  1. indicating feeling, sensitivity, or perception: telepathy.
  2. (Pathology) indicating disease or a morbid condition: psychopathy.
  3. (Pathology) indicating a method of treating disease: osteopathy.

Number two is what we need for our purposes.

That leaves us with ‘gamm’, which I thought was part of gamma considering the definition of the disease. The first medical definition in The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/gamma was helpful here.

“of or relating to one of three or more closely related chemical substances

  • the gamma chain of hemoglobin
  • γ-yohimbine

—used somewhat arbitrarily to specify ordinal relationship or a particular physical form and especially one that is allotropic, isomeric, or stereoisomeric (as in gamma benzene hexachloride)”

I’d have to agree if you’re thinking this is getting a bit too technical to continue down this particular road. Let’s go back to the disease itself and see what it may have to do with CKD. Hmmm, protein is mentioned in the definition and proteinuria can be a problem in CKD. Is that the connection?

We Are Macmillan, a cancer support group from England at https://www.macmillan.org.uk/information-and-support/diagnosing/causes-and-risk-factors/pre-cancerous-conditions/mgus.html, tells us:

“People with MGUS make an abnormal protein, called a paraprotein or M-protein, which is found in the urine or blood.”

I see. This M-protein does show up in the urine.

That did it. I jumped right back to the Mayo Clinic and learned that Chronic Kidney Disease may be a complication of MSUG. But, then again, so may blood clots and bone fractures.

Feeling a bit frustrated, I thought maybe symptoms would be helpful. The University of Rochester Medical Center at https://www.urmc.rochester.edu/encyclopedia/content.aspx?ContentTypeID=134&ContentID=121 offers this list.

Symptoms of monoclonal gammopathies vary among these conditions, but can include:

  • Anemia or low red blood cells counts
  • Lack of energy (fatigue) or tiredness
  • Weakness
  • Pain in the bones or soft tissues
  • Tingling or numbness in the feet or hands
  • Infection that keeps coming back
  • Increased bruising
  • Bleeding
  • Weight loss
  • Headache
  • Vision problems
  • Swelling
  • Mental changes

Anemia and fatigue may also be symptoms of CKD. Yet, both MSUG and CKD are often symptomless.

To complicate matters, there’s also a disease called monoclonal gammopathy of renal significance. That’s when the monoclonal gammopathy causes the CKD. It sounds like this was not the case with the reader. She just happens to have both monoclonal gammopathy and CKD.

I’m going to switch gears here. I received an email from the American Kidney Fund (AKF) asking me if I would write about their upcoming webinar on Depression. Who could say no to that request?

“Each month, AKF hosts an educational webinar for kidney patients and their loved ones about living well with kidney disease…. Experts cover important topics and there is always a live Q&A session afterwards where viewers can send in their questions. You can find more information about the upcoming webinar here: http://www.kidneyfund.org/training/webinars/

Our next webinar for May 23rd is Depression: the overlooked complication of kidney disease.”

I’ve watched some of the webinars and found them helpful. I think you will, too.

You know that promise I made about separating my unwieldy The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books – SlowItDownCKD 2013 & SlowItDownCKD 2104 – with larger print and a more comprehensive index? You know, just as I did when I separated The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 (now ‘retired’ as a book no longer in print is called) into SlowItDownCKD 2011 & SlowItDownCKD 2102. I am proud to announce that I’ve actually started that process.

For a retired person, my calendar sure is full and busy seems to be my middle name. I vow to have the SlowItDownCKD series completed (until it’s time to publish SlowItDownCKD 2018, that is) by the end of the summer.

Happy Mother’s Day this coming weekend. I’m going to enjoy the fact that it’s my step-daughter’s first…. and hope we get to meet The Little Prince sooner rather than later. Living in two different states was never this hard before his birth.

Until next week,

Keep living your life!

And the Beat Goes On

Happy New Year! After a night of thinking about my life and where it’s gone in the last almost 71 years, I remembered some events from a long, long time ago. For example, when I was a young woman in my late teens, I used to go to the clubs in New York City and dance the night away. I had a drink or two – never more – but I was there to dance… and that’s I did. I danced until I felt my whole body pulsing. Pulsing. That’s the word we used, but it has a very different meaning for me today over 50 years later.

High blood pressure can damage your kidneys. Maybe, like me, you’ve been ordered to take your blood pressure daily even if you are taking medication for hypertension. But what is this pulse/min reading I see at the bottom of the blood pressure monitor face?

Back to the beginning. According to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/pulse, this is the way we used the word in relation to our dancing:

“rhythmical beating, vibrating, or sounding”

The same dictionary tells us that this is the way my blood pressure monitor uses the word:

“a: the regular expansion of an artery caused by the ejection of blood into the arterial system by the contractions of the heart

b: the palpable beat resulting from such pulse as detected in a superficial artery; also: the number of individual beats in a specified time period (such as one minute)

I knew that. I’ll bet that you did, too; but I keep forgetting why that’s important.

Verywell, a conglomeration of information from doctors, dieticians, and personal trainers, at https://www.verywell.com/pulse-pressure-1763964 answers that question for us:

“Sometimes pulse pressure does provide important information. There’s research showing that pulse pressure can be valuable when looking at a patient’s overall risk profile. Several studies have identified that high pulse pressure:

• Causes more artery damage compared to high blood pressure with normal pulse pressure

• Indicates elevated stress on a part of the heart called the left ventricle

• Is affected differently by different high blood pressure medicines

So if you’re diagnosed with high blood pressure, your doctor may consider it when designing your overall treatment plan.”

Now I understand why my physician’s nurse gets that look on her face after taking my pulse sometimes. Since I have no heart problems, although Chronic Kidney Disease can easily lead to them, my hypertension medication may have to be adjusted or the ones I’m taking replaced with others that won’t raise my pulse level.

But what about the possibility of “elevated stress on a part of the heart called the left ventricle?” And why only the left ventricle? Wait a minute; what is a ventricle anyway?

I have definitely forgotten more than I ever knew to begin with! Enough grousing.

Let’s see how precise a definition of ventricle we can get. The Oxford Dictionary at https://en.oxforddictionaries.com/definition/ventricle offers the following definitions:

“A hollow part or cavity in an organ…..

Each of the two main chambers of the heart, left and right….

Each of the four connected fluid-filled cavities in the centre of the brain.”

It’s pretty obvious we need the second definition.

But why is the left ventricle the only one that may experience “elevated stress”? Healthline (The same organization that included SlowItDownCKD in the top six nephrology blogs of 2016 & 2017.) at https://www.healthline.com/human-body-maps/left-ventricle explains:

“The left ventricle is the thickest of the heart’s chambers and is responsible for pumping oxygenated blood to tissues all over the body….. Various conditions may affect the left ventricle and interfere with its proper functioning. The most common is left ventricular hypertrophy, which causes enlargement and hardening of the muscle tissue that makes up the wall of the left ventricle, usually as a result of uncontrolled high blood pressure.”

So here I am, taking three blood pressure medications, and it’s possible to still have uncontrolled high blood pressure?

Apparently so, the American Heart Association at https://www.heart.org/HEARTORG/Conditions/HighBloodPressure/MakeChangesThatMatter/Managing-High-Blood-Pressure-Medications_UCM_303246_Article.jsp has some interesting information about this.

“Because different drugs do different things in the body, you may need more than one medication to properly manage your blood pressure…. Different people can respond very differently to medications. Everyone has to go through a trial period to find out which medications work best with the fewest side effects. Give yourself a chance to adjust to a drug. It may take several weeks, but the results will usually be worth it. If you don’t feel well after taking a medication, let your doctor know so he/she can adjust your treatment.”

Considering that Chronic Kidney Disease causes high blood pressure as well as high blood pressure causing CKD, I intend to keep doing just that.

We’re not finished with the pulse just yet. I wanted to know the basic connection between blood pressure and pulse and I wanted a simple explanation of it.

But first we’ll need a definition of artery. No problem, that’s what the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is for.

“Arteries: Vessels that carry blood from the heart.”

Let’s get to the heart (That’s funny. Get it? Heart) of the matter now.

HealthCentral at https://www.healthcentral.com/article/pulse-rate-and-high-blood-pressure-defining-the-connection had exactly what I asked for.

“Because high blood pressure causes tension and complicates cardiovascular normal activity, it may cause stress with your pulse activity. Meaning, the arteries experience resistance against the flow of the blood. The pulse rate calculates the number of times the heart beats per minute. The rate measurements indicate the heart rate, heart rhythm and the strength of your pulse. Therefore, high blood pressure slows down normal blood flow causing the arteries to demonstrate difficulty with expanding.”

Got it! Now, if I can only remember it….

Here’s hoping this New Year is your best year yet – as I say to my grown children every year. Wishing you health first of all, then love from your friends and family, and finally kindness to share with others.

Thank you for being my readers and thank you for helping to make this an award winning blog not once or twice, but three times.

Until next week,
Keep living your life!

This Former Hippy Wannabe Likes HIPAA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Shocked

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!