What The Greatest Generation Taught Me

Admin

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.”

View Article

AMERICAN ASSOCIATION OF KIDNEY PATIENTS LEADS NATIONAL “ARE YOU O-K+?” CAMPAIGN

The American Association of Kidney Patients (AAKP), the oldest and largest, fully independent kidney patient organization in the U.S. is pleased to initiate a national educational “Are You O-K+” campaign aimed at increasing awareness of the devastating effects high potassium (known as hyperkalemia) can have on individuals with advanced chronic kidney disease (CKD).

Admin
The American Association of Kidney Patients (AAKP), the oldest and largest, fully independent kidney patient organization in the U.S. is pleased to initiate a national educational “Are You O-K+” campaign aimed at increasing awareness of the devastating effects high potassium (known as hyperkalemia) can have on individuals with advanced chronic kidney disease (CKD).
Read More

National High Potassium Awareness Day: Patient Story, Dale Rogers


Admin

Patient Story: Dale Rogers, AAKP Board of Director/Ambassador

Dale Rogers is a two-time kidney transplant recipient.  Like many other kidney patients Dale has struggled with high potassium (also known as hyperkalemia).  Dale shares that high potassium became a huge problem for him when he was fasting and dieting, while on dialysis, in order to get to a health weight for receiving a kidney transplant.  Although Dale was very knowledgeable and strict about eating a kidney friendly diet, fasting would cause his potassium storage to dump into his system.  He had trouble walking and getting around when his potassium levels became too high.  He remembers one scary episode where his potassium level reached 6.9%! The normal, safe range for potassium level is 3.5-5.0.

Luckily, Dale was able to get his potassium in check by watching his diet very closely and keeping his labs at the proper level without medication.  Dale wants his fellow kidney patients to know that they need to be careful, “some foods and drinks that dialysis patients consume can kill them.”  Dale recalls eating a big bowl of granola and felling sick for days after – until his next dialysis appointment – with no kidney function, his body could not handle the amount of potassium he had consumed.  Dale says kidney patients should also think about the drinks that they consume.  He says after a dialysis treatment, patients often get cramps.  Someone not knowledgeable about a kidney friendly diet might recommend a sports drink for the cramps, but sports drinks are commonly high in potassium.  Dale wants patients to know that “education and knowledge about potassium can save your life.”

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

View Article


KIDNEY PATIENTS DEMAND CONGRESS PASS BIPARTISAN CORONAVIRUS BILL ASAP!

The American Association of Kidney Patients (AAKP) deployed a sophisticated, virtual campaign today aimed at pushing the U.S. Congress to act immediately on pending Coronavirus emergency response legislation to protect the health of all citizens; provide urgent assistance to workers and employers; and to inject a strategic stimulus into the national economy.

Admin
The American Association of Kidney Patients (AAKP) deployed a sophisticated, virtual campaign today aimed at pushing the U.S. Congress to act immediately on pending Coronavirus emergency response legislation to protect the health of all citizens; provide urgent assistance to workers and employers; and to inject a strategic stimulus into the national economy.
Read More

CELEBRATING NATIONAL KIDNEY MONTH

Admin

By Jim Myers, AAKP Board of Director, AAKP Ambassador (Indiana)

National Kidney Month 2020

March is National Kidney Month. It is a time where we raise awareness across the country about kidney diseases and the importance of kidney health. This March is drastically different as we are not only raising awareness of kidneys, but across the globe, united we are working to manage the implications of the Coronavirus (COVID-19). Individuals with kidney diseases are at an increased risk for contracting virus such as the flu and COVID-19 due to our suppressed immune systems. So, this year, it’s not only important to raise awareness of kidney disease in general, but to also understand the unique needs of this population. Read on to learn more about your kidney health and for the latest information on COVID-19 from reliable sources such as the Centers for Disease Control and Prevention (CDC) and the National Institute of Health (NIH) visit https://aakp.org/center-for-patient-research-and-education/coronavirus-resources/.  

Each year for National Kidney Month there is a new theme to help raise awareness. This year, in conjunction with the National Heart, Lung and Blood Institute (NHLBI), the theme is the link between high blood pressure (HBP) and kidney disease.

What Is High Blood Pressure (HBP)?
Blood pressure is the force of blood pushing against your bloody vessel walls as your heart pumps blood throughout your body. High Blood Pressure (hypertension) is an increase in the force that blood places on the vessels as blood moves through your body.

What Do Your Kidneys Do?
Kidneys that are functioning normally filter a half cup of blood a minute to remove waste & extra water to make urine. The urine goes from your kidneys to your bladder, and eventually out of your body.

How Does High Blood Pressure Affect Your Kidneys?
As a result of the increased pressure on the walls of your blood vessels, HBP can cause the blood vessels to narrow. This in turn causes damages the blood vessels throughout the body, including those in the kidney. The constriction reduces your blood flow to the kidney.

This in turn causes damage to your kidneys. Damaged kidneys that aren’t working well, cannot remove all the waste products from your body. This causes toxins to build up in your body and can eventually lead to total kidney failure.

High Blood Pressure Leading to Kidney Disease is Very Common

HBP is the second leading cause of kidney disease. According to National Institutes of Health (NIH), almost 1 of 2 Adults in America (108 Million People) have high blood pressure. More than 1 in 7 American Adults (37 Million People) have chronic kidney disease and most don't know it. This is why during the month of March, we urge you to get tested for Kidney Disease.

Who Is More Likely to Have High Blood Pressure and/or Kidney Disease?

You are more likely to have high blood pressure if:

1. You're Older- Blood Pressure usually increases as we get older. Our blood vessels thicken and stiffen over time;
2. Family History- HBP runs in the family;
3. You Have an Unhealthy Lifestyle- Bad habits like eating too much salt, drinking too much alcohol, not being physically active can increase your risk of HBP;
4. You Are African American, Hispanic or Asian - These populations are more likely to have high blood pressure than Caucasians;
5. You Are Male- Sorry, guys but men are more likely to have high blood pressure than females before the age of 55. Women are more likely to develop HBP after 55.

Kidney Disease Factors

Factors that increase your risk of Kidney Disease are:

1. Diabetes;
2. HBP- can be both a cause and as a result of Kidney Disease;
3. Family History- a family history of Kidney Disease or heredity can cause it, for example polycystic kidney disease;
4. Race/Ethnicity- African Americans, Hispanics & American Indians are at greater risk of Kidney Disease.

The Good News

The good news is that you can take steps to protect your kidneys from HBP. These steps include:

1. Take Your HBP Medication: If your doctor prescribes meds for HBP, make sure you take it as directed. This will lower your blood pressure which in turn will slow the development of Kidney Disease;
2. Maintain A Healthy Weight- You can improve your BP by maintaining a healthy weight as recommended by your doctor;
3. Eat Healthy Foods and Beverages- Fruits and vegetables, lean meat, whole grains & heart-healthy foods should be on your shopping list;
4. Quit Smoking!!;
5. Get Plenty of Sleep- Try for 7-8 hours of sleep every night;
6. Exercise- Try to get at least 30 minutes or more of physical activity every day.

Conclusion

High Blood Pressure is one of the leading causes of chronic kidney disease. In National Kidney Month, please consider taking steps to avoid HBP. Also, please consider testing for Kidney Disease. Talk to your doctor about urinalysis and a blood test for Kidney Disease. Early detection and early treatment could save your life!

REFERENCES

March is National Kidney Month,
https://www.davita.com/education/kidney-disease/risk-factors/march-is-national-kidney-month

National Kidney Month 2020,
https://www.niddk.nih.gov/health-information/community-health-outreach/national-kidney-month?utm_source=facebook&utm_medium=social+media&utm_campaign=nkm+2020&fbclid=IwAR2PIH4_hg8B7BT4-tUQw26o5poFTf63tYKmcvJMUHKKf9lDI5rQIho2KxU

How High Blood Pressure Can Lead to Kidney Disease,
https://www.heart.org/en/health-topics/high-blood-pressure/health-threats-from-high-blood-pressure/how-high-blood-pressure-can-lead-to-kidney-damage-or-failure

High Blood Pressure & Kidney Disease,
https://www.niddk.nih.gov/health-information/kidney-disease/high-blood-pressure

High Blood Pressure,
https://www.kidneyfund.org/prevention/are-you-at-risk/high-blood-pressure.html

AAKP Resources

AAKP Pocket Guide to Managing Kidney Disease

AAKP Educational Brochures and Resources

AAKP Coronavirus Resources

View Article

March 13, 2020 – Joint letter for $3 billion request for NIH over FY 2020, including increase for NIDDK

Admin

March 13, 2020

Dear Chairman DeLauro, Chairman Blunt, Representative Cole, and Senator Murray:

On behalf of the undersigned organizations, representing kidney patient advocates and health professionals dedicated to improving patient care, thank you for your steadfast commitment to the National Institutes of Health (NIH) and leadership, including the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). As you draft the Labor, Health and Human Services, Education and Related Agencies appropriations legislation for FY 2021, we respectfully request $3 billion for NIH over FY 2020 levels, including a robust funding increase for NIDDK that is at least proportional. In addition, we urge you to consider a Special Statutory Funding Program for Kidney Research at $150 million per year over 10 years.

A January 2017 Government Accountability Office (GAO) report highlighted the pressing need for investment in kidney research; GAO found that the annual cost for care of the approximately 650,000 patients in the Medicare End-Stage Renal Disease (ESRD) program exceeded the budget allocation for the entire NIH. While NIH’s budget allocation has grown since that time, we still dedicate equivalent of approximately just 5 percent of the annual total cost of care for kidney failure to kidney research at the NIH.

Since the GAO study was published, the number of patients with kidney diseases and associated costs to the taxpayer have also risen. There are now more than 720,000 Americans living with kidney failure, and Medicare spends $35 billion managing kidney failure and $116 billion managing kidney diseases, 15% of all Medicare spending. Greater investment in kidney research should be an urgent priority to deliver better outcomes for patients and bring greater value to the Medicare program.

As the GAO highlighted, Congress made a commitment to treat all Americans with kidney failure through the Medicare End-Stage Renal Disease (ESRD) Program—the only health condition for which Medicare automatically provides coverage regardless of age. This unique commitment underscores the imperative for Congress to foster innovation and discovery in kidney care.

Our organizations believe the Special Statutory Funding Program for Type 1 Diabetes Research provides an ideal model to foster breakthroughs in kidney therapies and cures. This Special Diabetes Program has generated remarkable progress for diabetes patients, including the development of the Artificial Pancreas. We urge your support for an additional $150 million per year over 10 years to establish a similar program NIDDK focused kidney research—a Special Statutory Funding Program for Kidney Research—supplementing regularly appropriated funds that the NIDDK receives.

NIDDK funds the vast majority of federal research in kidney diseases, and despite the immense gap between the federal government’s expenditures on kidney care and its investment in kidney research, NIDDK-funded scientists have produced several major breakthroughs in the past several years that require further investment to stimulate therapeutic advancements. For example, geneticists focused on the kidney have made advances in understanding the genes that cause kidney failure, and other kidney scientists have developed an innovative method to determine if new drugs cause kidney injury before giving them to patients in clinical trials.

NIDDK launched the Kidney Precision Medicine Project that will pinpoint targets for novel therapies—setting the stage for personalized medicine in kidney care. Additional, sustained funding is needed to accelerate these and other novel opportunities to improve the care of patients with kidney disease and bring better value to the Medicare ESRD program.

Thank you again for your leadership, and for your consideration of our request. Should you have any questions or wish to discuss NIDDK or kidney research in more detail, please contact Erika Miller with the American Society of Pediatric Nephrology at (202) 484-1100 or emiller@dc- crd.com or Rachel Meyer with the American Society of Nephrology at (202) 640-4659 or rmeyer@asn-online.org.

Signed,

Alliance for Home Dialysis

American Association of Kidney Patients

American Kidney Fund

American Nephrology Nurses Association

American Society of Nephrology

American Society of Pediatric Nephrology

American Society of Transplantation

American Society of Transplant Surgeons

Atlantic Dialysis Management Services

Children’s Organ Transplant Association

DaVita

Dialysis Patient Citizens

Fresenius Medical Care

Halpin Foundation

Home Dialyzors United

IGA Nephropathy Foundation of America

Kidney Care Council

Kidney Care Partners

National Kidney Foundation

NephCure Kidney International

Nephrology Nurses Certification Commission

Northwest Kidney Centers

Oxalosis and Hyperoxaluria Foundation

PKD Foundation

Rare Disease Kidney Foundation

Renal Pathology Society

Renal Physicians Association

Renal Support Network

Rogosin Institute

Satellite Healthcare

Transplant Recipients International Organization

Vasculitis Foundation

Veterans Transplantation Association

Download the official letter

View Article

World Kidney Day: March 12, 2020

Admin

By Suzanne Ruff, Living Donor, AAKP BOD and author of The Reluctant Donor

Wikipedia describes World Kidney Day as follows: “World Kidney Day (WKD) is a global health awareness campaign focusing on the importance of the kidneys and reducing the frequency and impact of kidney disease and its associated health problems worldwide.

World Kidney Day is observed annually on the 2nd Thursday in March. At the start of this holiday, 66 countries observed this date in 2006. Within two years, this number rose to 88. WKD is a joint initiative of the International Society of Nephrology and the International Federation of Kidney Foundations (IFKF).  This holiday was intended to raise awareness about conditions of the kidney; although many are treatable, they are a secondary medical concern of the greater population.

This year World Kidney Day continues to raise awareness of the increasing burden of kidney diseases worldwide and to strive for kidney health for everyone, everywhere. Specifically, the 2020 campaign highlights the importance of preventive interventions to avert the onset and progression of kidney disease.”

Those are the facts about World Kidney Day. My personal note about World Kidney Day is to say: I love kidneys!  Don’t you? Kidneys are so wonderful that I would like to make a suggestion to readers of this blog. On World Kidney Day, please take a moment to stop and whisper a thank you to your kidneys. 

I am not only referring to people who are battling kidney disease –I mean everyone! Focus and be grateful for what the mighty kidney does even if and especially if you are in any of the stages of kidney disease. Kidneys are small but powerful organs. Your kidney does so much work within your body – critically important work for the health of your body. Just as your heart beats to keep you alive, your kidneys filter our blood to cleanse toxins and filter waste from your body.  About 52 gallons of blood are filtered through your kidneys each day. Kidneys help regulate our blood pressure and release the hormones that help make red blood cells and keep our bones healthy. 

The top two reasons for kidney failure are high blood pressure and diabetes. The best way to take care of your kidneys is to ask your doctor at your annual physical (and you ARE getting an annual physical, right?) is “Doc, how are my kidneys doing?” Take responsibility for your health. Know your creatinine level, your blood pressure and glucose level Keep your eyes open about how your kidney function is doing.  Kidney disease is a silent disease.  We can prevent it by monitoring our blood pressure and your glucose level for any signs of diabetes. 

This is great advice for anyone with or without kidney disease.

You might wonder why I am so passionate about kidneys?

My family suffers from a genetic kidney disease called polycystic kidney disease (PKD). If your parent carries the gene for PKD, you have a 50% chance of inheriting the disease.  We can trace the disease back over seventy years, a timeline that shows much of the progress made in the treatment of kidney disease. Back in the 1940’s my grandmother was told there was nothing that the doctors could do for her failing kidneys. No dialysis, no transplantation, nothing!  I shudder to think of how sad it must’ve been. My mother was a teenager when her mother died of kidney failure. 

Years later, my mother battled the same disease, as do both of my sisters. I am a living kidney donor to one of my sisters. My other sister received a kidney from a deceased donor.  Mom, too, was given fifteen more years of life, after ten years on dialysis, by a deceased donor.  That is why I am passionate about kidneys. 

I like to remind people to ask their doctors how their kidneys are doing. Because if you take care of your kidneys, they will take care of you.  

 

Visit AAKP’s World Kidney Day webpage

 Download and Share AAKP's Pocket Guide Managing Kidney Disease

 

 

View Article

CORONAVIRUS EXPANDS KIDNEY PATIENT VIRTUAL ENGAGEMENT WITH WHITE HOUSE AND CONGRESS

The American Association of Kidney Patients (AAKP), the nation’s largest fully independent kidney patient organization, today announced that given the serious threat posed by the Coronavirus to the kidney patient community, they are encouraging all patients and their families to avoid unnecessary travel, including all planned travel to Washington, D.C. during National Kidney Month in March and for the immediate future. Historically, hundreds of kidney patients and their families travel to the nation’s capital to discuss policies related to patient care choice and medical innovation with White House and Congressional officials.

Admin
The American Association of Kidney Patients (AAKP), the nation’s largest fully independent kidney patient organization, today announced that given the serious threat posed by the Coronavirus to the kidney patient community, they are encouraging all patients and their families to avoid unnecessary travel, including all planned travel to Washington, D.C. during National Kidney Month in March and for the immediate future.
Read More

THE AMERICAN ASSOCIATION OF KIDNEY PATIENTS ENGAGES AMERICA AND CONGRESS DURING NATIONAL KIDNEY MONTH

March is the month when Americans and the U.S. Congress are asked to focus on kidney disease, a condition that impacts 40 million people, with an additional 700,000 suffering from kidney failure. The American Association of Kidney Patients (AAKP) is raising its voice against a silent killer throughout March. Founded in 1969, AAKP is the oldest and largest, fully independent patient-led, kidney patient organization in the U.S. This March marks the first National Kidney Month in AAKP’s Decade of the Kidney™ Initiative.

Admin
March is the month when Americans and the U.S. Congress are asked to focus on kidney disease, a condition that impacts 40 million people, with an additional 700,000 suffering from kidney failure. The American Association of Kidney Patients (AAKP) is raising its voice against a silent killer throughout March. Founded in 1969, AAKP is the oldest and largest, fully independent patient-led, kidney patient organization in the U.S. This March marks the first National Kidney Month in AAKP’s Decade of...
Read More

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.

Admin
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.
Read More