Post submitted by Suzanne Ruff, a Patient Co-Investigator on our study.
Over 70 years ago, my mother stood next to her mother on her deathbed. My mother was a teenager at the time. My grandmother’s kidneys had failed and there was nothing the doctors could do for her. There was no dialysis, no transplants, no magic pill to save my grandmother.
Over 50 years ago, my mother stood next to her sister on her deathbed. Her kidneys had failed, too. Dialysis was new and exciting, but there were not enough dialysis machines for everyone who needed one. My aunt gave up her place on the waiting list for a dialysis machine so someone else with a family could live. My aunt was a Roman Catholic nun and felt God wanted her to do that. She died at age 45.
Two years later, my mom’s two brothers had kidneys that were failing. That’s when the family learned a genetic disease called polycystic kidney disease (PKD) caused all the heartache.
My mother and father decided to find out (with the antiquated genetic testing of 50 years ago) whether mom and their three children had the disease. The results almost destroyed my father. Three out of four of us tested had inherited polycystic kidney disease. A disease without a cure. Dad stumbled into the gloom of depression. Alcohol was his solace.
When Mom’s kidneys began to fail and she started dialysis, she often said how blessed and lucky she was because Medicare covered her dialysis. Dad was still a problem, though, and mom gave him an ultimatum: I need you.
Do you know what Dad did? He stepped up, sobered up, and stood up to kidney disease with the kind of courage Dad said was given ‘by the grace of God’.
He dedicated his life to being Mom’s caregiver and he did it with amazing grace. His compassion was genuine as he learned to cook and make the house sparkle. He tirelessly worked to educate himself about kidney disease, find a cure and fundraise. He wrote letters to Congress, knew his legislatures, and went to Capitol Hill. His claim to fame is that he made a telephone call that resulted in the first federal funding for research on polycystic kidney disease. Explaining why he stepped up, “It’s better than having a pity-party if you get involved.”
Two months ago, I stood next to my Dad on his deathbed. Despite my tears, at 95 years of age, it was his time. I am blessed ‘by the grace of God’ to have had such a wonderful man for my father.
PREPARE NOW Principal Investigator, L. Ebony Boulware, MD, was the lead author on an Editorial published today in the Journal of American Medical Association (JAMA).
The publication states: "Kidney transplantation saves lives, improves patients’ quality of life, and it is less costly in the long run compared with dialysis treatments. Despite this, kidney transplantation remains underused in the United States. Fewer than 15% of patients who initiate hemodialysis are placed on the deceased donor kidney transplantation waiting list or receive a kidney transplant within 1 year of dialysis initiation."
Read the full article on the JAMA website here! Let us know in the comments below ways that you think can improve the kidney transplantation process.
This post was submitted by Hanna, a 29 year old Medical Assistant that lives in Ohio. This is her live kidney donation story.
In October 2018, my co-worker's son, Brandon, came to the doctor's office not feeling well. He thought he just had a nasty cold and complained of fatigue. I was his medical assistant coincidentally that day, so the doctor saw him and ordered bloodwork that I had to draw on him. Later that day we got the test results back and I informed my coworker that he needed to take his son to the ER as soon as possible. He was in stage 5 kidney failure at the young age of 20!
Everything happened so fast. They started him on dialysis immediately and he was in the hospital for a week. They finally sent him home and set him up with at-home dialysis as he was put on a waiting list for a cadaver kidney. My coworker eventually returned to work a week later. I remember talking to him in the break room asking him how his son was doing and if they knew when people could start getting tested to see if they are matches. He said that information would be coming soon. I smiled at him as I wrote my number on a post-it note and said call me when you get the information. He’s going to be okay, I’m going to be his match.
My coworker, Don, had a tear running down the left cheek, I had a tear running down my right cheek. We hugged and I walked away. A few weeks passed and Don finally received the information for testing. I called and set up my appointment immediately. The end of January I had my testing. Early February I got the call stating that I was a perfect match for Brandon! I was ecstatic, but I knew I would be his match in my heart. The nurse told me that we had the same blood type and that our tissues and antibodies reacted negatively, so there was less of a chance for rejection.... AMAZING!
The next step was going through an extensive head to toe physical to make sure I was healthy enough for surgery. A few weeks later, I found out that I was cleared for surgery and scheduled for my pre-op testing, more blood-work and meeting with a few people.
The only way I can describe this whole experience is that GOD put this on my heart and lead me to this opportunity. My faith has brought me to giving this young man a second chance at life! Brandon and I will forever share a bond and I am blessed beyond words to share a part of myself with such an amazing young man! Before his diagnosis he was working two jobs, going to school full time, saving for a car, and enjoyed roller coasters! My wish is for him to return to all of the things he loves and is passionate about. We will get through this together. Kidney buddies for life!
Hanna and Brandon underwent a successful live kidney donation surgery on June 19, 2019.
Meet Lana, a Patient Co-Investigator on our study. Learn about her and her struggles with kidney care in the spotlight below.
I am passionate about raising kidney awareness throughout our nation and want to improve the quality of care and services for kidney patients, making a difference in their quality of life. I have had my own marketing consulting business for years and I use those skills to promote kidney awareness in my local community and nationwide.
I was on dialysis for 13.5 years before receiving a kidney transplant using an experimental drug, which suppressed my high antibodies. I have been on all the modalities and did home hemodialysis on my own, putting in my own needles, 7 days/week for 2 hours each treatment. I have been a national patient advocate for many years and strongly believe that kidney patients talking to kidney patients is very important to improve their quality of life. Also, I want to be involved in empowering and equipping kidney patients to be fully educated in making medical decisions for their life. It is very important that kidney patients receive information about their disease and possible options as early on as possible.
Why is this project important? I want to bring positive change for kidney patients, helping them to be more informed and knowledgeable about the disease and how to make the best decisions for themselves.
With kidney failure, there are three treatment options to help filter your blood and take over part of the work your damaged kidneys can no longer do. Those options are:
Living with kidney failure can be a huge challenge. It works best if you stick to your treatment schedule, review your medicines with your health care provider at every visit, follow a special eating plan, and are active most days of the week.
Post submitted by Kelli Collins, MSW, a Stakeholder Research Partner on our study. Kelli is the Vice President for Patient Engagement at the National Kidney Foundation (NKF).
Many people are curious about clinical trials and medical research. They may wonder – What are clinical trials? How do I find one? Do I qualify? Is it safe? Others are confused about or even fearful of clinical trials. In addition, it can be hard to find clinical trials and enroll in them if eligible.
To help overcome these challenges and dispel myths, the National Kidney Foundation (NKF) launched a website to help connect people with kidney disease to clinical trials. Visitors to the new site will find information about how clinical trials work, including how researchers find patients to enroll and what patients joining a trial are expected to do. Personal stories from people who have participated in a clinical trial along with general information about medical research can help patients decide if they would like to become involved in medical research. And, if so, the site can help them find clinical trials in their local area by answering a few questions about their health.
Additional topics include:
So whether you are just curious to learn more about clinical trials or are ready to find one to join visit the NKF Clinical Trials website here.
Want to get this information in the mail? A brochure by mail? Contact our NKF Cares Helpline to request your free copy (available in English and Spanish) today: 1-855-653-2273 or firstname.lastname@example.org.
Post submitted by patient co-investigators, Katina Lang-Lindsey, PhD, LMSW.
On Oct 31- November 2, 2019, I and another PREPARE NOW team member attended the Fourth Annual PCORI Conference at the Wardman Park Marriott, Washington, DC. The conference included well over 1,000 patients, caregivers, researchers, clinicians, and other healthcare stakeholders.
The theme this year included, "From Evidence to Impact: Putting What Works into Action". This year featured several workshops and plenaries on what patient-centered outcomes research look like in the field? How do patients and other stakeholders engage in studies? These stories provided insight into the workings of projects funded by PCORI. I heard from researchers describing their partnerships with patients as stakeholders. I learned how innovative research impact and make a difference for patients, caregivers, clinicians, researchers and the healthcare community as a whole.
I was privileged to attend a meeting about how telehealth can improve patient care outcomes. The session spot lighted two different projects with positive findings relevant to mental illness and skin disease. Among other workshops, I attended a workshop about prevention to risk mitigation and treatment for opioid use disorders, which I believe to be a timely discussion regarding the opioid epidemic in America to date.
Finally, I became an Ambassador while attending the conference and was able to meet with other Ambassadors. I was able to network and exchange contact information for further discussions about patient engagement. In fact, a few Ambassadors and I founded a patient engagement group referred to as “Engagement Buddies for CER & PCOR” where patients and caregivers can network. I met and became friends with people from different parts of the United States. Everyone sitting around the table were Ambassadors and I was honored to meet them at this conference.
Care for patients transitioning from chronic kidney disease to kidney failure often falls short of meeting patients' needs. The PREPARE NOW study is a cluster randomized controlled trial studying the effectiveness of a pragmatic health system intervention, ‘Patient Centered Kidney Transition Care,’ a multi-component health system intervention designed to improve patients' preparation for kidney failure treatment. Patient-Centered Kidney Transition Care provides a suite of new electronic health information tools (including a disease registry and risk prediction tools) to help providers recognize patients in need of Kidney Transitions Care and focus their attention on patients' values and treatment preferences. Patient-Centered Kidney Transition Care also adds a ‘Kidney Transitions Specialist’ to the nephrology health care team to facilitate patients' self-management empowerment, shared-decision making, psychosocial support, care navigation, and health care team communication.
The PREPARE NOW study is conducted among eight  outpatient nephrology clinics at Geisinger, a large integrated health system in rural Pennsylvania. Four randomly selected nephrology clinics employ the Patient Centered Kidney Transitions Care intervention while four clinics employ usual nephrology care. To assess intervention effectiveness, patient reported, biomedical, and health system outcomes are collected annually over a period of 36 months via telephone questionnaires and electronic health records. The PREPARE NOW Study may provide needed evidence on the effectiveness of patient-centered health system interventions to improve nephrology patients' experiences, capabilities, and clinical outcomes, and it will guide the implementation of similar interventions elsewhere.
Click here to read the full article.
Meet Peter Woods, a patient co-investigator on our study who was a NYPD cop during September 11, 2001.
This post was originally published by American Heart Association:
Peter Woods hardly called in sick back when he worked for the New York Police Department. Then terrorists attacked the World Trade Center, creating a noxious cloud of finite glass, cancer-causing chemicals and other pollutants that hovered for months around ground zero.
“I was healthy before 9/11,” said Woods, a retired police sergeant whose simple statement echoes thousands of others expressed by first responders and volunteers who helped with rescue and cleanup efforts. “I was healthy as a horse.”
But within a few years of Sept. 11, Woods was diagnosed with sarcoidosis, an inflammatory disease that often affects the lungs and lymph nodes in the chest, as well as sinusitis and sleep apnea. All are conditions recognized and covered by the federally funded World Trade Center Health Program.
But Woods, 57, also developed kidney disease, and then heart disease, two serious conditions that aren’t. He fears what other ailments might eventually emerge for him and others in his position.
Researchers so far have linked respiratory illnesses, certain types of cancer, acid reflux, sleep apnea, post-traumatic stress disorder to the collapse of the World Trade Center on Sept. 11, 2001.
Many of the problems centered around the enormous dust cloud created by the fall of the twin towers. Fires on the ground scorched for days, adding burnt carcinogenic particles to air already filled with asbestos, fiberglass and other deadly chemicals.
More recently, studies have found some 9/11 survivors who have post-traumatic stress disorder are more likely than survivors without PTSD to have strokes and heart attacks.
Heart disease, however, is not recognized as a World Trade Center-related condition.
Neither is the autoimmune disease that ultimately destroyed Woods’ kidneys, leading him to years of dialysis before he finally received a transplant. As with many kidney disease patients, Woods suddenly found himself with heart problems. His previously healthy cholesterol level skyrocketed.
In 2005, at age 44, he had the first of two heart stents inserted to open up blocked arteries. In January 2008, he underwent triple bypass surgery.
“There is no coincidence in any of this,” he said.
Woods recently participated in a study conducted by Dr. Mary Ann McLaughlin, cardiovascular health and wellness director of Mount Sinai Heart at New York’s Mount Sinai Medical Center. McLaughlin’s research is examining “a critical knowledge gap” – the extent of kidney disease among 9/11 survivors.
“This far out from 9/11, it's amazing that there are disorders we're still finding, especially with cancer rates that may be starting to climb, since it takes many years from initial exposure to a carcinogen to have the actual impact,” she said.
Autoimmune disorders such as lupus also have become increasingly diagnosed among survivors.
“Many patients complain of increase in allergies and dermatitis since 9/11, leading doctors and researchers to suspect that the symptoms are due to hyperactive immune reactions from being inundated with so much pulverized material,” she said. “These are part of the things you start to see years and years after a disaster.”
More than 71,800 first responders and 16,600 survivors currently receive treatment through the World Trade Center Health Program. And the numbers grow each month by the hundreds.
Woods hopes to raise awareness about heart diseases and other conditions not yet recognized by the health program, which provides free treatment to those with certified 9/11-related illnesses.
“There are so many diseases that took too long – it took 14 years to recognize some cancers. People died prior to getting that recognition,” he said.
Woods said the most difficult impact has been the reverberations on his family.
His daughters, who were 4 and 6 when he underwent bypass surgery, often feared they wouldn’t come home to their dad after school. And Woods missed years of their basketball and softball games because of dialysis.
“My kidneys were destroyed by 9/11, but it’s not a problem recognized officially,” he said. “I can only talk for me, but recognition would give me validation.”
Sun! Many of us know to protect our skin, but if you’re a kidney transplant recipient, it is especially critical!
Dr. Steven F. Wolfe is a fellow of the American Academy of Dermatology and Board Certified with a practice in Mooresville, North Carolina. He received his MD from UC San Francisco and trained at UCLA and Harbor-UCLA Medical Center. Dr. Wolfe tells transplant recipients why they must be aware, “The immune suppression required to protect you from rejecting your kidney transplant substantially increases your risk of developing skin cancer. Unfortunately you can't change your exposure from the past, (growing up and prior to your kidney transplant) but you can protect rigorously once you've had a transplant. Remember, you already have one strike against you--the medicines that prevent rejection. Don't add another preventable strike--unprotected sun exposure.”
Kidney transplant recipient and AAKP Board of Director, Kent Bressler received a kidney transplant from his brother thirty-one years ago. “My Nephrologist Transplant specialist advised me to cover up. I have used sunscreen SPF 50. Most damage to the skin usually occurs in your much younger years. I burned a lot as a kid in the corn and bean fields of Nebraska. As soon as I started Cyclosporine, it just accelerated the process. I have gone to a dermatologist every three months. My advice to all pre and post-transplant patients is to go in before transplant for a top to bottom exam to document your skins condition.”
It’s not just Cyclosporine that adds the risk. Dr. Wolfe adds, “You have a dramatically increased risk of developing skin cancer after a transplant so you want to do everything you can to mitigate against that risk. And remember this, skin cancers in transplant patients can be far more serious than those in patients without a transplant. These skin cancers can be more aggressive, grow deeper, penetrate vital structures, spread to lymph nodes, metastasize, and recur more commonly. They are often harder to treat and can require more deforming surgeries or additional treatments such as radiation.”
In 2006 when AAKP Vice President and Board of Director, Richard Knight received his kidney transplant, he was not formally told then of the risk of skin cancer. It was the nurse who mentioned it to him on his follow up visits. One time while in the waiting room to see his doctor, another patient pointed out to Richard, ‘Despite the fact that you are an African American man, you still need to wear sunscreen and be aware of the higher risk skin cancer is to kidney transplant recipients.’ Knight said, “That was when I really thought about it!”
This post is submitted by one of our patient co-investigators, Suzanne Ruff. Suzanne is one of the only people in her family without kidney disease, though she is a proud living kidney donor!