Marching Forward with Kidney Disease Advocacy

By Troy Zimmerman, Vice President of Government Relations

With the end of March, National Kidney Month, I am writing this blog to celebrate the astonishing accomplishments of kidney patient advocates across the country.  It truly was an incredible month for us all!

March began with an amazing 5th Annual Kidney Patient Summit in Washington, DC, hosted by the National Kidney Foundation.  Nearly 100 patients and family members from 41 states, and five organizations, met with 145 legislators’ offices.  They advocated for the Living Donor Protection Act (H.R. 1270) to protect living kidney donors, for improved early detection and treatment of chronic kidney disease (CKD) under H.R. 3867, and increased funding for federal CKD research, awareness and assistance programs.  This effort began to bear fruit almost immediately as additional Representatives signed on to co-sponsor our legislation after the Summit concluded.

Group Photo

On March 21st, we achieved a victory as Congress passed agency funding legislation for FY2018.  The CDC’s National Center for Chronic Disease Control and Prevention and Health Promotion received $2.5 million, a nearly 20% increase.  The National Institute of Diabetes and Digestive and Kidney Diseases’ (NIDDK) funding was increased by $100 million, to $1.97 billion.  Health Resources and Services Administration’s (HRSA) Division of Transplantation received a $2 million increase to $25.5 million.  Its’ Bureau of Primary Care received $1.625 billion, an increase of $135 million.

To top it all off, eight-year-old Fore Putnam made his mark by bringing CKD to the President’s desk while advocating for his father, who is seeking a kidney transplant.  Having written President Trump, he received a reply from the White House which led to an interview on Fox and Friends where he made a personal plea for a living kidney donor.

Not all our accomplishments were at the national level.  Advocates in numerous states – including in Pennsylvania, Maryland and Arizona – worked with their governors and state legislators to improve awareness of CKD by issuing proclamations to celebrate kidney patients and living kidney donors.

On March 27th, Maryland’s state legislature passed significant legislation (HB 96) to help living organ donors.  This legislation, supported by the National Kidney Foundation, will provide living organ donors a state tax credit up to $7,500 for the unreimbursed cost of travel, lodging, and lost wages because of donation.  Are you interested in what your state’s benefits are for living donors?

The crown jewel of our advocates’ state activities was in Idaho.  With the support of the National Kidney Foundation, two patient advocates worked with their state legislature to pass legislation (S.1302) protecting living organ donors from insurance discrimination based upon their status as an organ donor.  This legislation, based on the Living Donor Protection Act (H.R. 1270), is the first of its kind in the country.

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Marty Durand, transplant recipient, Sen. Cherie Buckner Webb, sponsor (D, Dist. 19, Boise), Idaho Gov. Butch Otter, Alex Fox, Kidney Advocacy Committee Member, NKF, Rep. Sally Toone, House floor sponsor (D, Dist. 26, Gooding)

April is Donate Life month.  What accomplishments will kidney patients achieve this month?  Are you willing to make your mark on CKD policies?  Contact us if you would like to join us in our mission!

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The Doctor-Patient Relationship: How it Impacts Care

Bradley A. Warady, MD, Director, Division of Pediatric Nephrology, Children’s Mercy Kansas City

Dr. Warady and patient .pdfWhen I started practicing medicine more than three decades ago, it wasn’t uncommon for a doctor to tell his patient – this is what you need to do to get better- and assume that the directive would be carried out. There wasn’t a two-way conversation or feedback from the patient and family that was taken into consideration when devising the treatment plan. But times have changed. Now, with an increased emphasis on family engagement and the doctor (healthcare team) – patient relationship, and acknowledgement of the importance patient and family input has on medical decision making, a new and better treatment paradigm is taking shape.

Practical Management Recommendations

Families can play a critical role in determining optimal treatment recommendations by sharing aspects of their everyday lives with healthcare team members and prompting management decisions that have the best possible chance of being successful. The information to be shared can address a variety of issues. Does the child live in a one or two -parent household? Do the parents work at night or during the day? What is the school and after school schedule of the child? All of these factors and more often come into play. If this information is not shared with providers, patients and parents may leave their physician’s office with the best intentions, but in reality they can’t carry out the recommendations. The medical process, especially as it pertains to complex pediatric care, needs to incorporate recognition of the demands that families encounter each and every day. Patients and families should be encouraged to share those demands.

This type of individualized care isn’t easy. It takes work and commitment from both sides. But once families and providers agree upon a treatment plan which can realistically be implemented, the benefits of the time spent become apparent and families soon recognize the healthcare team’s commitment to work with them as partners and not merely as patients or even “customers”.

Surveying Patients: Why Feedback is Important

One of the ways we obtain feedback from our patients and families in our Division of Pediatric Nephrology, is by regularly evaluating their satisfaction with the care we provide every time they leave our clinic. We ask if we have met or exceeded their expectations. Patients and families should feel free to share their opinions when given the opportunity as the information they provide not only helps us learn what we’re doing right, but it also can highlight issues that require attention to improve the care that we provide.

Embracing The Patient’s Perspective in Health Care

The goal to continually improve the provider-patient relationship isn’t exclusive to Nephrology. Appreciation of the challenges that patients and families are confronted with and the need to actively partner and communicate with one another to achieve the best possible outcomes is a practice philosophy that should be embraced in all of areas of health care. Providers need to make every effort to actively engage children and their families, since they so often can contribute to the solution for problems that exist. At the same time, families need to recognize how much the healthcare team values and depends on their input. Tackling challenges and generating answers together helps overcome obstacles and positively impacts care.

It takes a multidisciplinary team of doctors, nurses, psychologists, dietitians, pharmacists, Child Life specialists, social workers and others working together to provide the best possible care to kids with complex disorders. Patients and families may not be used to being asked by their providers to be members of that team and to help determine strategies that work. Thankfully, that paradigm is changing.

Learn more from the National Kidney Foundation about Advocacy in Action. Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.
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Saving a Child’s Life

By Alex Fox, NKF Kidney Advocacy Committee Advocate

I am a living kidney donor. On May 31, 2016, I was blessed with the opportunity to give one of my kidneys to the sweetest, special needs 15-year-old I have ever met. How did that happen? How is she doing today? Let me answer those questions.

alexdarienneIn October 2015, I saw a post on Facebook from the sister of a woman with whom I went to school. It was a plea for a kidney donor. I was moved enough to reach out to that mom and say I was willing to be tested for her daughter. At that time, two of her family members were in the process of being tested. During January 2016, she messaged me and let me know that the two candidates didn’t work out.

That’s where my journey began. 

I was tested, prodded, poked and honored to find out that I was a perfect match for her. Darienne calls me Uncle Alex now. We have a bond that is just plain amazing. I visit her often when I travel back to Utah where the transplant took place. In the Summer 2016, I reached out to the NKF to see what I could do, and I went to go to Washington D.C. last March to speak about living organ donation.

It is so important that we make sure that living donors are protected in their jobs when they are recovering from giving the gift of life. Luckily, I had an employer that not only allowed me the time off, but they even paid me while I was down. Not everyone is so fortunate, which is why I advocate on behalf of legislation like the Living Donor Protection Act. Please help me support this bill by writing your legislators. I’m very grateful for the opportunity that I have of spreading this message. heroes park

As a follow up, I was notified last summer that I was selected to be included in a local  park as a Hero. The park is called, “Heroes Park.” I was chosen by a local high school to have my face be one of five included around the perimeter of the park. On March 15, 2018, there was an official ceremony at the park where I shared my message about living organ donation.

May you all be blessed in your time of need and may find your “hero” should you ever need it.  In the meantime, consider being someone else’s!

Learn more from the National Kidney Foundation about Advocacy in Action. Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.
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Putting Patients at the Center of Kidney Disease Research

by Kelli Collins, MSW, Vice President of Patient Engagement, National Kidney Foundation

One in three American adults is at risk for kidney disease. The problem already affects 30 million American adults, 90 percent of whom don’t know they have it. The National Kidney Foundation’s sole focus is to address those daunting statistics.

NKF leads the charge in increasing awareness about kidney disease through action, education, and accelerating change. A key piece of that mission is advocating for research that answers the questions most important to patients with kidney disease and those who care for them. As we mark National Kidney Month, we reflect on our commitment to this critical patient-driven research, including our growing and meaningful relationship with the Patient-Centered Outcomes Research Institute (PCORI).

Doctor explaining urological problems

PCORI, a private, nonprofit organization authorized by Congress to fund research that helps patients and their caregivers make better-informed decisions about the healthcare choices, has funded 17 patient-centered comparative clinical effectiveness research studies about kidney disease to date.

What Is Patient-Centered Kidney Disease Research?

Patient-centered research involves patients as true partners throughout the entire process, from developing the research question to disseminating findings. Several years ago, we conducted a review of existing patient-centered outcomes research focused on kidney disease. We found that unless a project was funded by PCORI, most research didn’t actively engage patients in the process. At the same time, we were building our kidney patient-advocacy committee, which brings together patients, care partners, and family members to develop programs that support our mission. We wanted to find ways to involve them and others impacted by kidney disease in research.

Because NKF is a voice for patients and professionals, a source for education, and a connection for all stakeholder groups, it made sense for us—and our members—to form partnerships with PCORI.

Patient-Centered Outcomes Research Stakeholders’ Conference

Our review of existing patient-centered research culminated in the first Patient-Centered Outcomes Research Stakeholders’ Conference on kidney disease, in April 2017. Patients, caregivers, clinicians, academics, and other stakeholder groups came together to identify kidney disease-related research topics, brainstorm how to alleviate barriers to including patients in research, and make connections to work together on future research projects.

“The conference truly embodied how patients and researchers can work collaboratively to address questions most important to kidney patients. Over the course of a year, patients and stakeholders were true partners throughout all phases of this conference project: working together in the planning of the activities, shaping the agenda, and leading the conference activities, as well as disseminating the findings,” says Derek Forfang, a kidney diseases patient and cochair of the stakeholders’ conference.

To maximize participation, we held the stakeholders’ conference—which included 100 participants from 17 states—in conjunction with our Spring Clinical Meetings, NKF’s premier conference for kidney health professionals. In a striking change from most research discussions, patients really drove the conversation. Researchers sat back, listened, and asked follow-up questions. Patients shared their perspectives and helped shape research questions. The group came to a consensus on top kidney disease research priorities, the main barriers to completing kidney disease patient-centered outcome research, and the best solutions to remove those barriers. More details are in the conference summary.

“This is the beginning, turning discussions into action to change the landscape,” Forfang says.

More NKF Initiatives to Promote Kidney-Related PCOR

Since the conference, NKF has already applied many learnings and insights to engaging patients in all aspects of research. For example, NKF is providing at least $40,000 to fund a Patient-Centered Outcomes Research Grant. The grant, which we’ll announce in June 2018, will focus on top kidney disease priorities identified by the patients attending the conference.

Another PCORI-funded NKF project already is under way. The Home Dialysis Controversies Conference Series is bringing together patients, caregivers, clinicians, researchers, and others in the healthcare industry to produce proposals to develop interventions to address the barriers to maintaining dialysis treatment at home. It will also explore ways to measure home dialysis quality. The project aims to establish an initiative to improve home dialysis quality and to connect patients to home-dialysis research projects.

We are also contributing to PCORI-funded research on other kidney-related topics, including shared decision making between patients with advanced kidney disease and their doctors, and a project to reduce disparities in kidney care for underserved minority populations.

At NKF, we serve not only to improve the lives of the millions of Americans with kidney disease, but also to reduce the burden on future patients. Partnering in patient-centered research is a key prong in our strategy as we move forward.

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PCORI’s Kidney Disease Focus

PCORI has funded 17 patient-centered comparative clinical effectiveness research studies to help patients and those who care for them make better-informed decisions about treating kidney disease.

Studies include comparing treatment options for kidney failure, testing whether patients with kidney disease should take blood-thinning drugs, and determining whether involving community health workers in underserved populations can improve outcomes, and many others.

For more information, see PCORI’s fact sheet, Research Topic page, and a list of kidney disease projects.

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Funding for Kidney Health in the Omnibus Bill

Summit+Select06284_s_sm cropWe are very excited to announce that funding levels for kidney disease priorities supported by the National Kidney Foundation were increased or maintained in relation to Fiscal Year 2017, despite proposed cuts by the Administration.

On March 21, House and Senate leadership finalized a bipartisan agreement to fund discretionary programs through the end of Fiscal Year 2018 (September 30, 2018).

The Centers for Disease Control and Prevention’s (CDC) National Center for Chronic Disease Control and Prevention and Health Promotion (NCCDPHP) is at the forefront of our nation’s efforts to prevent and control chronic diseases. Within the NCCDPHP, the Chronic Kidney Disease Program addresses the social and economic impacts of kidney disease. For FY 18, the kidney disease program will receive $2.5 million, a very significant increase from the $2.1 million for FY 17 and the highest level of funding in the program’s 12-year history. In addition, Million Hearts, which aims to prevent 1 million heart attacks and strokes by 2022, received continued funding at $4 million despite the President’s proposal to eliminate its funding. Million Hearts work is crucial to preventing kidney disease, through its hypertension initiatives, and to reducing cardiovascular complications which are the number 1 killer in people with kidney disease.

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which provides funding for research efforts to improve the prevention and treatment of CKD, will receive $1.97 billion, representing a $100 million increase.  NIDDK is part of the National Institutes of Health which received a $3 billion increase.

The Health Resources and Services Administration’s (HRSA) Division of Transplantation (HRSA-DoT), responsible for implementation of national policies and oversight governing the distribution of organs to those awaiting an organ transplant, will receive a $2 million increase to $25.5 million. HRSA’s Bureau of Primary Care will receive $ 1.625 billion, an increase of $135 million to support a national network of more than 10,000 health clinics in underserved communities. Community health centers serve 1 in 13 Americans, of whom many would otherwise have little or no access to care and are at disproportionate risk for chronic kidney disease due to the high prevalence of hypertension and diabetes.

The House of Representatives is scheduled to vote on the bill this morning, followed by the Senate, after which it will go to President Trump for his signature.

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4 Lessons on Dealing with Teenage Kidney Disease

By Haley Newkirk, National Kidney Foundation Kidney Advocacy Committee Advocate

3-21_Kidney_Month_-_Haley_Newkirk1I made it through my freshman year of high school before things went sideways. I grew up a healthy kid, with the usual slew of ear infections, strep throat, and the occasional flu. I’d been battling what seemed like a drawn-out cold for a few weeks before heading into urgent care with abdominal pain. My first blood pressure reading of 200/130 stunned the nurses, who, after two machines and a manual reading to confirm, rushed me to Children’s Hospital of Colorado with acute kidney failure.

I immediately went on dialysis, meekly swallowing dozens of pills and choking down a bland kidney-friendly diet of Pop Tarts and plain hamburger patties. I did my best to keep playing soccer, spending time with friends, and attending as much school as I could, supported by my incredible family, medical team, and caring community.

Even though we never figured out what caused my kidneys to fail, six months later, I received a life-giving kidney transplant, affectionately known as “Stan”. In the nearly 10 years since that day, I’ve made the transition from dependent, sick kid to confident, reasonably competent adult, just like my peers – with a few more doctors and medications.

Today, kidney disease is just another part of who I am. A few years ago, I attended the Kidney Summit in Washington, D.C., with the National Kidney Foundation (NKF). For the first time, I interacted with patients and people affected by chronic kidney disease, and I got the chance to tell my story to policy makers and help bring about positive change. I learned that as a patient, I am uniquely able to support efforts to improve early detection, support living donation, and conduct life-saving research.

When you’re facing kidney disease as a child or their parent, it can be hard to see how it will all play out. While everyone’s situation is different, here are a few things I’ve learned between then and now that helped me along the way:

1. Take charge of your care. Ask a LOT of questions! My dad kept a notebook with long lists of questions that he would tick off each time a doctor came in the room. If you’re a parent, model this for your child and help them take over as they get older. I went appointments alone, coordinated my care with multiple doctors, and handled billing and insurance myself early on, which made the transition to independence much easier.

2. Treat your child like an active participant. Do your best not to talk down to your child and encourage their care team to do the same. Involve them in decision making whenever possible. As a teenager, I was so frustrated when people talked about me as if I were not there or called me “kiddo”. Kids of all ages are very perceptive; they know something is wrong, and they want to know something about what’s happening to them.

3. Document the highs and lows – especially the lows. My mom’s friend helped me start a blog during my first week at the hospital. It was a great way to keep track of what was happening and to share that with others. Today, it helps me remember everything I’ve been through. Whenever you’re facing a new challenge, health-related or not, you can look back and realize how strong you are and how far you’ve come.

4. Connect with others. You can learn so much from people who’ve dealt with similar challenges, and they can relate to your experiences in ways your loved ones and friends may not be able to, as hard as they try. In that vein, kids—talk to your friends about what’s going on with you, if you can. They don’t have any idea what to say or do, either!

Most importantly, remember that kidney disease is just another event in life. You’re on this road for the long haul, and you will always find ways to keep going, even when you think you can’t.

Learn more from the National Kidney Foundation about Advocacy in Action.  Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.
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Making America See Kidney Disease

By Andrew Fullerton, Government Relations Manager

On Thursday, March 8th, towns, cities, and the airwaves across the country turned orange in celebration of World Kidney Day.

DC BABG event

Patients presenting at the NKF Big Ask: Big Give Workshop

During the weekend leading up to World Kidney Day, in Washington, DC, the National Kidney Foundation (NKF) launched the first of many THE BIG ASK: THE BIG GIVE workshops designed to increase kidney transplantation by providing training tools that will help patients and families find a living donor.  The education gained prompted one attendee to announce that she would be tested to potentially donate a kidney to her husband.

Then on March 5th and 6th, nearly 100 advocates and

Group Photo
Advocates on the Capitol steps 

 family members joined five organizations at the 5th Annual Kidney Patient Summit, hosted by the National Kidney Foundation.  Participants educated Congress about chronic kidney disease (CKD) and asked their legislators to sponsor the Living Donor Protection Act (HR 1270), early detection and treatment legislation (HR 3867), and appropriations funding for CKD research and other programs. Our advocates made a significant impact.  Already, new legislators have become sponsors of our legislation and joined the Congressional Kidney Caucus at their request!

Mullin Award at Reception

Kevin Longino, Rep. Mullin (R-OK), Angelica Hale, Gov. Tommy Thompson (R-WI) at the World Kidney Day Congressional Reception

The Summit also hosted its first Facebook Live interview in Congress, with child singing star Angelica Hale, a kidney transplant recipient and the first-ever NKF Kid Ambassador, interviewing Congressman Bill Posey (R-FL) and Congresswoman Jaime Herrera Beutler (R-WA). We also hosted advocates, Washington, DC area supporters of NKF, congressional staff and legislators at a World Kidney Day Congressional Reception.  There, NKF awarded four Representatives who have stalwartly championed early detection and treatment of CKD in Congress, and listened to Angelica sing a stirring rendition of “The Greatest Love of All”.

Finally, during the Summit, NKF awarded one of our Kidney Advocacy Committee

Haley Newkirk Salick Award
Haley Newkirk with the Richard K. Salick Advocacy Award

advocates the Richard K. Salick Advocacy Award. This prestigious honor is presented an individual who embodies the spirit of NKF’s dear friend and staff member, Rich Salick, a former pro surfer who underwent three kidney transplants, faced cancer, but still put the needs of other kidney patients ahead of his own.  Haley Newkirk from Colorado, a leader among NKF’s Kidney Advocacy Committee, is a tenacious advocate for kidney patients and works to educate lawmakers about kidney disease, legislative priorities, and to help empower fellow kidney patients to make a difference in their lives.

On the floor of the Maryland State Senate, State Senator Thomas M. Middleton rose to

MD State Senate

A Facebook post from the NKF of Maryland on the state Senate

speak to Marylanders about World Kidney Day, CKD, the necessity of raising awareness, and increasing education about CKD.  There to watch were kidney patients and staff from the National Kidney Foundation of Maryland office.

In Arizona, the state celebrated World Kidney Day by issuing a proclamation declaring it also Living Kidney Donor Appreciation Day.

Harrisburg 2
Pennsylvania’s World Kidney Day Proclamation

In Pennsylvania, the governor presented a proclamation to our Philadelphia office for World Kidney Day and the office held a health fair at the state capitol building.

In numerous cities, news stations made their mark on the consciousness of American

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A tweet from Chanel 2 in Denver, CO

viewers by educating them during news broadcasts. Stations such as Denver, Channel 2 wore orange.  In Pittsburgh, WTAE Channel 4 and New York City’s WABC7 did the same.

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Participants in the Little Heroes, Big Voices event in Akron, OH

In Philadelphia, Temple University’s Men’s Basketball team wore orange while playing Tulane University in the first round of the NCAA American Athletic Conference Tournament.

In Akron, OH, NKF’s local office partnered with Akron Children’s Hospital to raise awareness about pediatric kidney disease.  Titled “Little Heroes, Big Voices,” this event was aimed at bringing pediatric CKD to the forefront of health care discussions.  In the last two decades, the incidence of CKD in children has steadily increased in all ethnic groups.  With so many Ohioans at-risk, the National Kidney Foundation and Akron Children’s Hospital decided that an awareness day was crucial to changing the statistics in Ohio.  In support of this event, the Deputy Mayor Marco Sommerville attended, and U.S. Senator Rob Portman taped a public service announcement.

As in previous years, dozens of landmarks across the U.S. turned orange for World Kidney Day:  Niagara Falls, the top of New York’s Empire State Building, the Gulf Tower in Pittsburgh, the Peace Bridge in Rochester; plus Tower280, Legacy Tower, Xerox Tower and numerous other buildings.  In Philadelphia, locations such as the Franklin Institute and Ben Franklin Bridge also joined in. In Sioux Falls, not only did the Falls turn orange, but advocates launched 30 lanterns to commemorate the 30 million Americans with CKD.

What did you do on World Kidney Day? Tell us by commenting below.

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A Teenage Son’s Perspective on Kidney Disease

Previously Traci shared her perspective as a mother to a child with pediatric kidney disease. Her teenage son, Tanner, offers below how his life is both different from and similar to others his age because of his condition.

This is my life. I don’t know any other way. My parents have always tried to make my life just like everyone else’s life. But, I have different things that I have to do besides being a teenager. I have to wake up at 7:35 a.m. every day to take medicine. I never get a day off.

Now that I’m a teenager, I set my own alarms and take medicine on my own. If I remember to take the medicine into my bedroom at night, I don’t have to get out of bed to take it. Otherwise I need to go get it, and then return to bed. I also text mom and dad to let them know I took it. If I don’t, they will get up to check.

3-15_Kidney_Month_-_Tanner_Krist2.jpgI can eat breakfast an hour before or after my morning medicine. On vacation and during the summer, it’s not a big deal. But during the school year, I have to get up and eat before 6:30 a.m. to avoid waiting to eat until second period. I also take medicine three other times throughout the day. It’s just part of my routine. I have alarms set to remind me of those, too. We have medicine containers filled, so that we never have to wonder whether or not I’ve taken my medicine.

Probably the biggest thing that sets me apart from other kids my age is what I drink. Soda and sports drinks are not really good for anyone but, medically, they are not beverages which I’m supposed to drink. I also limit the juices that I drink. Having orange juice or apple juice is an occasional treat for me.

The best beverage I can drink for my body is water – and a lot of it. My kidney functions best when I drink at least 3 liter of water per day. Try it. Three liters per day is twice what is recommended for the typical person. But my body is accustomed to so much water, so I can usually manage to drink that much each day.

If I don’t consistently drink that much every day, I risk a kidney rejection. Rejection is when the body recognizes the foreign organ and amps up my immune system to fight it. Rejection doesn’t mean that I’m going to lose my kidney; it just means that the cells need to be reorganized and put back in their place.

3-15_Kidney_Month_-_Tanner_Krist1.jpgI’ve had rejection a few times, and luckily it’s never been severe. But each time a rejection occurs, I must go to the Children’s Hospital of Pittsburgh of UPMC for a few days of treatments. I don’t ever want to be in the hospital. Who does? At least the Children’s Hospital of Pittsburgh knows us well, and everyone there is super nice.

After I’m treated for rejection, I can’t play sports for almost two weeks. That’s because a future biopsy is required, and with its chance of bleeding, all of my activity needs to be restricted during that time-frame. I don’t like this, but there is nothing I can do about it. So I deal with it.

In many ways, I’m a regular teenager. I play on my high school soccer and golf teams. I love to race go-karts, snowboard and have become a snowboard instructor at the local ski resort. But in other ways, I am not. To play these sports, I have specialized equipment that I have to wear that protects my kidney from injury. It’s just part of who I am.

Today I am a teenager who strives to get my driver’s license, go to college, and live the rest of my life.

Learn more about chronic kidney disease.  Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.
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A Mom’s Perspective

By Traci Krist, NKF Kidney Advocacy Committee advocate

Today, Traci shares her perspective as a mother to a son with pediatric kidney disease. In our next blog post, her son, Tanner, will share his perspective on living with pediatric kidney disease. Tanner receives nephrology care at the Children’s Hospital of Pittsburgh of UPMC.

My husband and I never stop worrying. We worry about everything. Did he drink enough today? Is his diet balanced? Do any classmates have a contagious infection? Did he take a nap? Is he getting sick? Is he moody? Do you think this is a sign of rejection? These questions and concerns never end. They are always in the back of our minds waiting for an opportunity to become our reality.

3-14_Kidney_Month_-_Traci_Krist2

Our family has been living with chronic kidney disease (CKD) since July 1, 2001: the day our first and only child, Tanner, was born. He was born 7 weeks premature with underdeveloped kidneys. His chronic kidney disease is not affiliated with any disease or syndrome. By the time Tanner was 5 years old, his kidney function had decreased to a point that he needed a transplant. Over the next nine months, we prepared for Tanner’s transplant. And on April 11, 2007, Tanner’s father donated a kidney to his son.

Adjusting to life on the other side of transplant was interesting. For the first time ever, Tanner could eat almost anything he wanted. Every meal was a treat. So many new foods to try. We relished each meal as if it were a reason to rejoice and celebrate.

It was also during this time we developed the daily habits and routines to earn a gold star every time we visited the doctor’s office. These habits and routines included recording fluid intake and output, setting alarms when it was time for Tanner to take medications, making sure hands were washed or sanitized randomly throughout the day, and covering Tanner in sunscreen whenever he was going to be outside.

As the days and weeks went by after the transplant, we never wavered with our daily routine: Set alarms and take meds at 8:00 a.m. and 9:00 a.m., then again at 8:00 p.m. and 9:00 p.m. This schedule never ended and never wavered. If Tanner was with family, friends, or sitters we would call or send a text to make sure the medicines were taken. This was a challenging time because my husband and I had to believe that when Tanner was with other people, he would get meds on-time, drink enough fluid, not be exposed to contagious infections and most importantly wear his kidney shield all of the time.

We’ve always been tentative about Tanner spending the night at friends’ houses. We recognized that many families care about Tanner and have compassion for him but have no idea how many little details are part of our daily routine. For instance, many mothers can still be seen licking their thumb to get dirt off a child’s face or allowing a piece of candy to be eaten…

“Five second rule!”

How many times do children share cups, utensils and food? We’ve made it our goal to not freak out in any of these situations. We simply say “No, thank you.” or “Thank you for helping,” then go about sanitizing, cleaning, fixing, or replacing whatever is needed from the situation.

As Tanner is getting older, our daily routines are not changing. We still record fluid input and monitor what he eats. It is important that he gets his minimal fluid input each day. Because some of the medications he takes have changed, we are able to be more lenient about the times that he takes them each day. In turn, that offers much needed flexibility for his teenage lifestyle.

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My husband and I knew that having a child with a transplanted kidney would take a lot of time, energy and communication. What we weren’t prepared for were some of the dips and bumps in the rollercoaster of transplant life. Just when we thought things were going well, Tanner would have a case of rejection and we’d have to spend 5-10 days in the hospital getting treatments.

Then there were the post-rejection consequences —such as no physical activities for two weeks, more medicines and their side effects, more frequent labs— that seemed to simply interfere with Tanner’s otherwise typical activities.

Over the years, no matter how many rejection episodes for which Tanner was treated, my husband and I always have the same fears and emotions. The fears shall remain unspoken because I am superstitious and believe if I say it, it may become a reality. Therefore, it is much better to keep those fears wrapped up and tucked inside. These emotions aren’t so easily concealed. No longer can I get away with happy tears. Today, it is not unusual for us to cry as a family. If one of us starts crying, the other will be soon thereafter.

Another aspect of post-transplant life for which we weren’t truly prepared is all the other health related issues that can develop or cause concern. At the forefront are long-lasting side-effects because of the steroid treatments given to stop rejection. For the past three years, Tanner has had to test his blood glucose levels and take insulin for varying lengths of time after he is treated for rejection. This has likely been the biggest challenge we’ve had as a family.

Tanner is considered to be diabetic. And this angers him. Tanner flat-out denies that he has a diabetes problem. He is adamant that it’s a short-term problem and will go away. Unfortunately, that may not be the case. Long-term care may be required to aid his pancreas in production of insulin. Only time will tell.

During these teenage years, we try to continue to be a typical family. But it’s hard when the concerns, issues, or routines are too real. They keep us vigilant, we remain hopeful for Tanner’s future.

Learn more about chronic kidney disease.  Also, see our series on pediatric kidney disease on the Children’s Hospital Association’s Speak Now for Kids Blog.
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NKF Honors Members of Congress, Angelica Hale, at Congressional Reception

Last evening, at NKF’s 2018 World Kidney Day Congressional Reception, the National Kidney Foundation, kidney patients, and our Summit partners honored Rep. Markwayne Mullin (R-OK), Rep. George Holding (R-NC), Rep. G.K. Butterfield (D-NC), and Rep. Linda Sanchez (D-CA) for their efforts to promote early detection and treatment of chronic kidney disease.

The World Kidney Day Congressional Reception was chaired by former United States Health and Human Services Secretary and Governor of Wisconsin Tommy Thompson who also received an award for his five years of outstanding service and dedication to the NKF and his longstanding commitment to organ donation awareness. He gave out the evening’s other awards with the help of the NKF Kid Ambassador Angelica Hale whose beautiful performance of The Greatest Love of All brought joy and inspiration to many kidney patients and staff in the audience. “Helping kids and people with kidney disease is my mission,” said Angelica. “I really hope I can help as many people as possible.” You can watch Angelica’s entire performance on her Facebook page.

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From left: NKF CEO Kevin Longino, Rep. Markwayne Mullin, Angelica Hale, and Gov. Tommy Thompson

The evening was marked with the words of encouragement and praise for the efforts of our kidney advocates, as well as support for the Living Donor Protection Act (H.R. 1270) and the CKD Early Detection and Treatment bill (H.R. 3867). “Personal stories really make a difference. I want to thank you for coming here and sharing yours,” said Rep. Mullin. “You sometimes come to the Hill and you leave thinking, ‘What did I really do except waste time?’ But you didn’t because you touched a lot of people’s hearts. You make my job much easier.”

As advocates begin to depart from the 5th Annual Kidney Patient Summit in Washington, D.C., we asked them to reflect on their meetings and the impact they had on their legislators.

Rahmeka

“It was so amazing to be able to visit the Senate Office buildings to share my personal connection to kidney disease while following up with Senator Kristen Gillibrand and Senator Chuck Schumer regarding the Living Donor Protection Act. What a perfect way to get an early start to the World Kidney Day! I want to thank the National Kidney Foundation for their continued support,” said Rahmeka Cox, a Kidney Advocacy Committee member from New York.

Visit the Summit website to learn more about the event, to see some of the materials being given to your legislators, check out photos from last year, or write your legislators.

 

 

 

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