National High Potassium Awareness Day: Patient Story, Chardae “Prima” Sanders

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Patient Story: Chardae "Prima" Sanders, AAKP Ambassador

AAKP Ambassador, Chardae “Prima” Sanders knows the devastating effects of having high potassium.  While on dialysis, Prima says that she did not watch her diet.  She admits, “I was a chip eater!  I would over-eat on chips.  I also ate bananas as a comfort food.  I never thought about the impact; I just thought that the machine would remove all the extra nutrients out of me.” 

Unfortunately, Prima started having an irregular heartbeat and went to the hospital multiple times.  At the hospital, they would give her Kayexalate, a medication to clean the potassium out of her system through diarrhea.  Her unhealthy eating habits had affected her heart.  In 2016 at the age of 27 years, while on dialysis, she had open heart surgery. 

The surgery was a wakeup call for Prima.  She realized she needed to change her eating habits and start exercising.  She was on dialysis another year and a half before she received a kidney transplant.  During that time, she stuck to a kidney-friendly diet.

Today, Prima says that even with her transplant, she continues to monitor her potassium levels closely at her monthly lab tests.  She continues to watch her diet and exercise.  She says she still eats chips and bananas, but in small portions.  She wants patients to know; “Be cognitive of your diet choices, exercise based on your mobility, and know your lab numbers and what they mean.”

Learn more about National High Potassium Awareness Day at www.areyouok.org 

Follow us on Twitter at @areyouok5point1 and Facebook at @areyouok5point1

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What The Greatest Generation Taught Me

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By Suzanne Ruff, AAKP Board of Director, author The Reluctant Donor

Every morning when we awaken, our first thoughts are about how the Coronavirus is ravaging across America and the world. Each hour, more and more innocent people and their families are impacted. We see COVID-19 devastation every moment on our televisions, smart phones and Ipads. We also learn of the heroism of our brave first responders and selfless medical personnel. To gain strength, I think of my family and the lessons they learned from other dark chapters in our shared American history.

The year was 1934 and the country was in the midst of what is called The Great Depression. My Dad was ten years old. His father became sick and entered the hospital, never to return or recover.

In 1941, my Mom was twelve years old when the Japanese bombed Pearl Harbor – the event that triggered America’s involvement in World War II.

I wonder today what the younger generation knows about those times. Do they know what the ‘Great Depression’ was? Is it taught in school? Do they know that 2,403 people died at Pearl Harbor? Mom described the worried faces of her parents that day as they gathered around the radio to listen to what happened in Hawaii. Does the younger generation understand there was no TV back then?

Suzanne Ruff, with her late father, John Gill, who served in the 86th Division of the United States Army.  He also served as an AAKP Board member.

Dad told us how his older siblings (five and eight years older) found jobs and gave their paychecks to my grandmother to keep the family afloat. His sister (my aunt) walked a mile to the store where she worked. It saved streetcar fare. Dad, too, at ten years old, did his part. He had a paper route delivering newspapers, giving his pay and tips to his mother. Note, though, that Dad never owned a bicycle. He walked the paper route. Nowadays, most of my neighbors don’t subscribe to a newspaper. News is delivered by the internet, television or (gasp) Facebook and Twitter. Years later, Dad switched to a different high school to save a nickel – 5 measly cents. It was the streetcar fare to the high school he had really wanted to attend. But, because his mother was still struggling and his brother and sister were married, Dad changed high schools. Family first.

Mom always said her carefree childhood changed on December 7, 1941. War was declared after the events of Pearl Harbor. She was the youngest of my grandparents six children, three boys and three girls. Mom’s brothers went off to fight in the war. Americans at home were asked to support the armed forces. Mom told of how she went with her Mother to volunteer at the Red Cross where she remembered “making bandages.” Mom loved meeting soldiers who were processed though Chicago; she helped as the Red Cross provided coffee and donuts. Mom often talked about contributing and working to help The War Fund. Patriotism was robust. People bonded together. The country united to raise funds so the country could protect itself after the terror and the crisis of being attacked on American soil. Americans were asked to donate and reach a goal that was surpassed by everyone uniting together. President Roosevelt called the War Fund efforts of the American people the “greatest single crusade of mercy in all of history.”

Sigh. I show my age now as I tsk, tsk, tsk about the younger generation. I fret about how they are handling the COVID-19 Pandemic. It will be the defining moment in many of their lives. I see the American spirit coming through, though, as so many Americans stay home to stop the spread of the virus. People are making sacrifices.

Will they know my Dad’s motto? God, Faith and Family? Or his way of prodding us in life to ‘dig in, work together, make do with what we have, don’t waste, be frugal, and save for a rainy day’. More serious than mom, Dad was always reminding us life is hard and life isn’t fair, stay off the ‘pity pot’, do your part and God will get you through it. His energy was impressive; work hard and never give up, (a ‘keep your nose to the grindstone’ kind of guy).

Mom was always full of sunshine and good humor (a ‘count your blessings’ kind of gal), along with a great deal of grit and determination, too. Mom’s family suffered with a genetic disease that later wreaked havoc on their lives causing great heartache and pain. Her motto was similar: Faith in God can get you through anything even when you don’t understand why it is so hard. Life goes on and you must go on, too. Be strong. Hold your head up high. Do the right thing and you can never go wrong.

I once wrote a newspaper story about a visit I made with Dad to a park dedicated to War veterans, dating from the Civil War to the Iraq War. As a WWII vet, Dad choked up reading the plaques in memory of the soldiers and said, “I’ve gotten through my life . . . by the grace of God.” When we left the park, Dad commented, “World War II saved the world from evil! And, now we are still fighting evil. Evil exists.” 

Evil? Whether in the form of a highly contagious virus called COVID-19, an economic collapse, an attack by an enemy that results in war, life isn’t for the timid.

My parents’ nuggets of wisdom sift through my mind. Americans have united to solve the Pandemic. Lessons of courage amid the heroes helping those of us sequestered in our homes. The exhausted, worried and blessed doctors, nurses and health care workers, the police, fire and medics, the essential businesses that are open, the truck drivers, the scientists, the grocery and delivery people, and the unseen number of exhausted people giving their all to help us through this Pandemic.

Faith, strength, kindness, good humor, discipline, and examples of greatness taught by those who went before us. The country will come through this “by the grace of God.”

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Rare Disease Day

As per the NORD (National Organization of Rare Disease) website: The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients’ lives.

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As per the NORD (National Organization of Rare Disease) website: The main objective of Rare Disease Day is to raise awareness among the general public and decision-makers about rare diseases and their impact on patients' lives.
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Medication Management for People with Kidney Disease

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By Tricia Patterson, BSN, RN

Hello AAKP members. My name is Tricia Patterson, BSN, RN. I had the pleasure of attending  the AAKP National Patient Meeting in Washington, DC in September and met many of you and heard some great lectures. I am a nephrology nurse and a member of the American Nephrology Nurses Association (ANNA). In recognition of “Talk about Your Medication Month”, I’m partnering with AAKP to blog about the importance of medication management. Since I donated a kidney three years ago, I am also a person with CKD who needs to carefully manage my labs and medications.

Please skip down to read the section for each type of kidney patient - CKD, dialysis or transplant:

Medication Management for People with CKD (Chronic Kidney Disease)

 

We all know that the kidneys are responsible for clearing toxins and fluids in the urine. But many people do not understand that the kidneys are also responsible for keeping the body in chemical balance. This is called homeostasis. For example, acid and base, potassium, calcium, and sodium are balanced by the kidneys. The kidneys have a hormone that helps with the blood levels for anemia.  In addition, the kidneys have a hormonal system for blood pressure control. When the kidneys are working well, they keep all of these things in balance every day, every hour, every minute. When the kidneys are not working well, the nephrologist (kidney doctor) works to manage homeostasis (your body’s chemical balance) by doing frequent lab checks to determine the right dose of all the medicines you need to get the values to the proper level and feel your best.

 

As people with CKD, we have a crucial role in keeping our bodies in balance. We should make sure that we schedule regular visits with our doctor(s) and make sure that the labs are drawn a few days before the visit to get the most accurate and timely results. It is important to fill new prescriptions right away and update your medication list, which should always be tucked inside your wallet. Many patients even find it convenient to store this information on their smart device or an app.  We all see multiple doctors, and each one should have an accurate updated list of your current medication, dosage and frequency. Over the counter medications (OTC) should be included on this list and should also be approved by your nephrologist before use.

 

For blood pressure management, it is helpful to your doctor if you keep a record of blood pressures every day so that the doctor can see trends and how you are responding to your BP meds. Record the morning BP 30 to 60 minutes after taking the BP medications, and take another reading before bed. Blood pressure that is too low is dangerous too, so call the doctor if you see pressures below 110/70.

 

For high phosphorus there are several medications called “binders” that are to be taken with the first bite of food at each meal to bind the excess phosphorus from the foods we eat that your body will not be able to get rid of, due to your kidney disease. The phosphorus is then excreted in the stool. Some of these pills should be kept in a small pill bottle that travels with you everywhere so you don’t forget to take it with your meals.

 

For high potassium (also known as hyperkalemia) there are medications that are mixed with water and should be taken every day as a maintenance medication. Lab results that show potassium at normal level means that the medicine is working, it does not mean it is time to stop taking the potassium binder. The level would creep back up. Your doctor will stop the medication only if your levels drop below normal.

 

For anemia some people with CKD will need to take a synthetic version of a kidney hormone that signals the bone marrow to make new red blood cells. This medicine is given as a small injection under the skin once every two weeks. Frequent lab draws are required to keep the dose at the correct level. 

 

 

Medication Management for People with ESRD (End Stage Renal Disease) on Dialysis

We all know that the kidneys are responsible for clearing toxins and fluids in the urine. But many people do not understand that the kidneys are responsible for keeping the body in chemical balance. This is called homeostasis. For example, acid and base, potassium, calcium, and sodium are balanced by the kidneys. The kidneys have a hormone that helps with the blood levels for anemia.  In addition, the kidneys have a hormonal system for blood pressure control. When the kidneys are working well, they keep all of these things in balance every day, every hour, every minute. When the kidneys are not working well, the nephrologist (your kidney doctor) works to manage homeostasis (your body’s chemical balance) by doing frequent lab checks to determine the right dose of all the medicines needed to get the values to the proper level and feel your best.

As people with ESRD, you have a crucial role in keeping your bodies in balance. Dialysis will remove some fluids, but it is less stressful to your body when less fluid is removed during dialysis. That is why the staff at dialysis is frequently reminding you to limit fluid intake and sodium in foods. In the same way, managing your blood pressure with medications is better than the high and low peaks of pre and post dialysis blood pressures.  The nephrologist reviews the labs that are drawn at dialysis monthly and  will tweak your medications based on these results. It is important to fill new prescriptions right away and update your medication list, which should always be tucked inside your wallet. We all see multiple doctors, and each one should have an accurate updated list. Over the counter medications (OTC) should be included on the list and should also be approved by your nephrologist before use.

For blood pressure management, it is helpful to your doctor if you keep a record of blood pressures every day so that he can see trends and how you are responding to the BP meds. Record the morning BP 30 to 60 minutes after taking the BP medications, and take another reading before bed. Blood pressure that is too low is dangerous too, so call the doctor if you see pressures below 110/70.

For high phosphorus there are several medications called “binders” that are to be taken with the first bite of food at each meal to bind the phosphorus from the foods we eat. The phosphorus is then excreted in the stool. Some of these pills should be kept in a small pill bottle that travels with you everywhere.  When phosphorus levels get too high in the blood, the phosphorus binds with calcium in the blood to form little “pebbles” of a material that is hard like your teeth. These phosphorus-calcium pebbles lodge in every little fork in the blood stream. The pebbles can build up and cause a blockage in crucial places like the heart muscle. Phosphorus binders work to prevent that buildup, but the medicine is not able to remove the old plaque buildup. I tell my patients that taking your binders every day is serious. Serious as a heart attack.

For high potassium there are medications that are mixed with water and should be taken every day as a maintenance medication. Lab results that show potassium in normal level means that the medicine is working, it does not mean it is time to stop taking the potassium binder. The level would creep back up. The doctor will stop the medication only if your levels drop below normal.

 

Medication Management for People with Kidney Transplants

We all know that the kidneys are responsible for clearing toxins and fluids in the urine. But many people do not understand that the kidneys are responsible for keeping the body in chemical balance. This is called homeostasis. For example, acid and base, potassium, calcium, and sodium are balanced by the kidneys. The kidneys have a hormone that helps with the blood levels for anemia.  In addition, the kidneys have a hormonal system for blood pressure control. When the kidneys are working well, they keep all of these things in balance every day, every hour, every minute. When the kidneys are not working well, the nephrologist (kidney doctor)works to manage homeostasis(your body’s chemical balance) by doing frequent lab checks to determine the right dose of all the medicines needed to get the values to the proper level and feel your best.

As people with CKD, we have a crucial role in keeping our bodies in homeostasis. We should make sure that we schedule regular visits with the nephrologist and make sure that the labs are drawn a few days before the visit. It is important to fill new prescriptions right away and update your medication list, which should always be tucked inside your wallet.

For post-transplant medications, it is required to have frequent lab tests to monitor the medication levels in your blood. Levels that are too low cause a risk of organ rejection, and levels that are too high are a risk of poisoning. Be sure to have your labs drawn on the dates ordered. You should have access to your lab results online and be educated on what levels are normal for you.  

For blood pressure management, it is helpful to your doctor if you keep a record of blood pressures every day so that the doctor can see trends and how you are responding to the BP meds. Record the morning BP 30 to 60 minutes after taking the BP medications, and take another reading before bed. Blood pressure that is too low is dangerous too, so call the doctor if you see pressures below 110/70.

For high phosphorus there are several medications called “binders” that are to be taken with the first bite of food at each meal to bind the phosphorus from the foods we eat. The phosphorus is then excreted in the stool. Some of these pills should be kept in a small pill bottle that travels with you everywhere. When phosphorus levels get too high in the blood, the phosphorus binds with calcium in the blood to form little “pebbles” of a material that is hard like your teeth. These phosphorus-calcium pebbles lodge in every little fork in the blood stream. The pebbles can build up and cause a blockage in crucial places like the heart muscle. Phosphorus binders work to prevent that buildup, but the medicine is not able to remove the old plaque buildup. I tell my patients that taking your binders every day is serious. Serious as a heart attack.

For anemia some people with CKD will need to take a synthetic version of a kidney hormone that signals the bone marrow to make new red blood cells. This medicine is given as a small injection under the skin once every two weeks. Frequent lab draws are required to keep the dose at the correct level. 

I hope these few tips were helpful. Stay healthy! 

 

 

 

 

 

Tricia Patterson, BSN, RN is a CKD Nephrology Nurse, Annapolis Nephrology Associates, Annapolis Maryland.  She spent seven years as Peritoneal Dialysis Nurse.  She is a Home Therapies Specialty Practice Network Lead for American Nephrology Nurses Association (ANNA).  She has published two articles in Nephrology Nursing Journal and was a presenter at national ANNA conference in 2018, 2019.

 

 

 

 

 

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AAKP 2019 National Patient Meeting – Meet The Planning Committee: Daronta Briggs

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By Melinda Starling, AAKP Communications Intern Daronta Briggs (Hampton, VA) was diagnosed with kidney disease in early 2008 and began hemodialysis that summer. He continued treatment until 2012, when he received a kidney transplant on October 24th. His journey didn’t end there. Being a veteran himself (Gulf War of 1990-91), Daronta finds it very important to spread awareness about kidney disease, especially to veterans.
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Walking For Kidney Transplants

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By Jim Myers, AAKP Board Member, Ambassador Posted: February 5, 2019 I have often been asked why I take such long walks. I was in my transplant doctor’s office a few months back. He gave me that look. You know the look. Like that look your Dad used too give you before the stern lecture was coming. The serious discussion lecture. He told me I was not getting enough exercise, and I should try to get out more. He suggested walking. I’ve never been an athlete. I have avoided exercise in the pas...
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AAKP Ambassador Mary Baliker shares her story


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AAKP Ambassador Mary Baliker shares her story with AAKP Pediatric Kidney Pals readers…. Written By: Deborah Pelaez, AAKP Marketing and Communications Manager Originally published in the August 2018 AAKP Pediatric Kidney Pals E-Newsletter At age nine, Mary was diagnosed with chronic kidney disease and doctors told her parents that she only had six months to live. This was in the early 1970s in Wisconsin when children did not receive dialysis; dialysis was a daylong treatment. At this time, chil...

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Meet Pediatric Nephrologist, Dr. Ken Sutha and Learn about New Pediatric Hypertension Guidelines


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Meet Pediatric Nephrologist, Dr. Ken Sutha and Learn about New Pediatric Hypertension Guidelines Written for AAKP by Dr. Ken Sutha Originally published in the June 2018, AAKP Pediatric Kidney Pals E-newsletter As a pediatric nephrologist with personal experience growing up myself with kidney disease, pediatric kidney health is a topic near and dear to my heart. . . and kidneys! First, a little about my background.

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June is PTSD Awareness Month (posted June 4, 2018)

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Written by: Kent Bressler, AAKP BOD and Ambassador, served in the United States Army June as PTSD Awareness Month and June 27 as National PTSD Awareness Day. I want you to meet Sarge, he has the answer to questions about military service and PTSD. Regardless of age or service time, if you feel you are experiencing symptoms of PTSD take advantage of Sarge’s sage advice and get help, it is never too late. WATCH SARGE’S VIDEO: https://www.facebook.
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