Kidneys are the coolest! Healthy kidneys clean out toxins, keep blood pressure under control and make strong bones. They also make pee. And who better to sing about the importance of having a pee test than these lovable kidneys? Watch the video and share it with everyone you care about.
Alex is just like any other 6-year-old: He attends kindergarten, plays soccer and baseball, enjoys riding his bike, and often can be found outside running around with his triplet brothers and older sister.
But Alex isn’t like other 6-year-olds. He suffers from chronic kidney disease.
Alex was born with one kidney, his left. As identical twins, he and brother Matthew split a pair of kidneys — Matthew has only the right kidney — a rare occurrence that doctors term a mirror anomaly.
Almost immediately after birth, Alex was diagnosed with a valve that blocked his ureter, which was damaging his solitary kidney. Because he and his brothers were born seven weeks premature, he was too little to have corrective surgery. So at 8 days old, he had surgery to circumvent the problem, then had surgery at 9 months old to remove the valve. Still, doctors informed us his kidney likely would never operate at full function and that, if his condition worsened, he could face the possibility of dialysis or transplantation later in life.
His chronic kidney disease is magnified by an issue with his bladder, discovered last year. While we have faith in his doctors and are encouraged by his treatments, we pray every day that his condition improves. At stage 3 kidney disease, he has no symptoms yet, and he’s the toughest person in the house.
Shortly after the boys’ birth, we had hoped to get involved with the National Kidney Foundation. We felt powerless to improve Alex’s condition, so we wanted to do anything we could to contribute to the search for a cure. But like most parents, we quickly became overwhelmed — times three!
Finally, last year, we signed up for the Pittsburgh Kidney Walk. We were taken aback by the outpouring of support Alex received. That, coupled with the incredible people at the NKF Greater Alleghenies chapter such as Erin, Melissa and Jade, only strengthened our resolved to remain deeply committed to the cause. Since then, we have been fortunate enough to be invited to the Pittsburgh gala fundraiser and address the local board. In such a short period, we have met incredible people and have renewed hope for Alex.
Alex just recently had his check-ups with his nephrologist and urologist, and doctors remain optimistic about his progress.
Just in time, too. Alex’s soccer and baseball teams start play this week.
— Rob and Keightley, Alex’s parents
In total, 100 advocates had meetings with 150 representatives and their staff members. Advocates shared their stories with Congressmen and pushed for legislation protecting kidney patients and donors. Advocates also talked about kidney disease awareness, immuno drug coverage, research, organ donation & more.
Among the 100 kidney patients, donors, and family members participating in the 2015 Kidney Patient Summit, many of the advocates have also been involved with the Kidney Walk. These walkers/advocates include Madi, an 18 year old kidney recipient who has been invited to speak at the upcoming Denver Walk; Jim, who has been involved with the Indiana Kidney Walk; Cody and Maggie, top fundraisers for the 2014 Iowa Walk; Dwayne aka Rusty, a CKD patient and top fundraiser at the South Carolina Kidney walk for the past 5 years; Shannon & Robert, from the NKF Florida office; and Jennifer, a living donor in New Mexico who is working on setting up a Kidney Walk in her area.
Thanks to all our advocates for making the 2015 Kidney Patient Summit a huge success!
The National Kidney Foundation had a staff member on site during the two day Summit to live-blog the event. Here’s a great recap of Day 1 & 2 on Capitol Hill:
We’re live blogging for the 2015 Kidney Patient Summit in Washington D.C. Check back for regular updates!
8:20pm – That’s a Wrap for Day 1
The advocates have finished up day 1 of the 2015 Kidney Patient Summit and are now getting rest for a long day of congressional meetings. Stay tuned for tomorrow’s live blogging from Capitol Hill. Patients will be meeting with their representatives and taking action for all the nation’s kidney patients and organ donors. Read the day’s news and find out how you can get involved in kidney advocacy below, or sign up to take action at https://www.kidney.org/takeaction
6:30pm – Meet the Advocate
Sarah K. Finlayson – Kidney Recipient
Sarah Finlayson, from Peabody, MA, has dealt with kidney disease for 45 years. After being diagnosed at two years old, she was one of the first people in the United States to undergo peritoneal dialysis. She has since had two kidney transplants and continues to share her story with other patients as a peer mentor for the National Kidney Foundation.
Here is a letter Sarah wrote to newspapers in her community before she came to D.C. for the 2015 Kidney Patient Summit:
A few months past my second birthday, I was diagnosed with Focal Glomerulosclerosis a rare kidney disease with no cure. This was over 45 years ago, in a time when child kidney transplants and peritoneal dialysis were merely theoretical.
While most kids are riding bikes, I began a daily regimen of hemodialysis. For over 45 years, I’ve battled kidney disease and cancer. I’ve been on hemodialysis, peritoneal dialysis and have received and lost a transplant.
My story has a great ending. I received a second, successful kidney transplant from my younger sister in 2005 and I have been healthy since that day.
I have been through a lot, but I want to let your readers know that there is hope and there are actions they can take to support those with kidney disease and organ transplants.
On March 2-3 I will be traveling to Washington D.C. to speak to representatives as part of the National Kidney Foundation’s Kidney Patient Summit. I will be urging legislators to fund research, protect kidney patients and raise awareness of kidney disease. I hope your readers will support my trip by signing a petition at www.kidney.org/takeaction.
Through the research, education, hard work and most importantly – community – we can ensure a better future for kidney patients and organ recipients. By spreading this message we can also let others know, they don’t have to go through this journey alone.
4pm EST – What You Can Do, Today!
- Improve early diagnosis and management of kidney disease. Ask your representatives to include a provision in the draft 21st Century Cures Bill to address 21st Century Chronic Diseases that specifically directs the Secretary of Health and Human Services to conduct a study on diagnosis, progression and outcomes in Chronic Kidney Disease (CKD). This will help our nation’s healthcare professionals identify, monitor and treat kidney disease.
- Ask for an increase in funding for the National Institute for Diabetes and Digestive and Kidney Diseases(NIDDK). Contact your representative on the House and Senate Appropriations Committees and ensure funding for kidney disease research at the NIDDK is increased by 6% over the President’s proposed budget.
- Strengthen the Medicare ESRD program for kidney patients! Ask your representative to support: a) The Chronic Kidney Disease Improvement in Research and Treatment Act (S. 538/HR 1130) to allow dialysis patients the choice to enroll in Medicare Advantage, which has caps on the amount we can be required to pay out of our own pockets for medical care. b) Extend Medicare coverage of immunosuppressive drugs for the life of the kidney transplant. Currently, Medicare coverage ends 36 months post transplant for those under age 65.
- Help protect living donors by asking your representative to cosponsor the Living Donor Protection Act when it is reintroduced by Representative Nadler (D-NY) this year. This bill will prohibit insurance companies from discrimination against living donors and will extend employment protection to living donors under the Family Medical Leave Act.
3pm EST – Why We’re in D.C.
Why is this important? According to new research, reported in this Washington Post story today, experts are predicting that half of U.S. adults could get kidney disease in their lifetime. Kidney disease is an urgent problem our leaders need to address!
You can be part of the solution by signing up to join our advocacy network.
2pm EST – Meet the Advocate
Ted Garding – Organ Donor
Ted Garding of Eagan, MN woke up on Easter morning in 2010 and read an article about living organ donation in his local paper. The thought suddenly struck him:
“This is something I am healthy enough to do.”
Garding registered to be an undirected altruistic donor, and gave a kidney to a 28-year-old man from Wisconsin.
“It was the most rewarding and educational experience I have ever had,” he said.
The man who received the kidney told Garding after the donation that he had been sick his whole life, and finally knew what it was like to feel well.
“That was the best gift I’ve ever received,” Garding said. “I’ve gained a new friend, and I’ve never felt better mentally and physically in my life.”
Now Garding is actively involved with the National Kidney Foundation, spreading awareness of kidneys and kidney disease by giving Your Kidneys and You presentations, and becoming an advocate at the 2015 Kidney Patient Summit.
“If I had never seen that article, my donation would never have happened,” Garding said. “That’s why I think awareness is so important. People should be aware of organ donation and aware of the disease itself. That’s why it’s a pleasure to be part of the NKF’s advocacy summit.”
Welcome back to the live blog for the 2015 Kidney Patient Summit in Washington D.C. Read all about Day 1 here and check back for regular updates!
8:30pm – That’s a Wrap, Here are our Highlights!
The 2015 Kidney Patient Summit was a huge success! Scroll down to read the day’s activities (day one activities can be read here), and join our advocacy network to build the momentum around kidney issues. Check back tomorrow for a roundup of our advocates’ social media posts. And finally, here are the highlights from NKF’s government relations experts:
Tonya Saffer, Senior Health Policy Director, NKF
“My highlight was our very last meeting with Sen. Chuck Grassley of Iowa. He actually came in and spoke face-to-face with our advocates. Afterward, Grassley’s health policy advisor told the advocates how important their work was and encouraged them to keep talking about the issues they believed in. It meant so much to hear that our advocates were inspiring their representatives.
It’s important for everyone to know this is not a one-time thing. Everyone should follow-up with their representatives, let them know your issues and keep following up throughout the year. Join our advocacy network for more information on how you can advance kidney causes.”
Troy Zimmerman, Vice President, Government Relations, NKF
“We had a few minutes with congresswomen Susan Brooks of Indiana’s 5th District. She spent about five minutes with us and asked informed questions about kidney disease. She also spoke with one of our young advocates about being a pediatric kidney patient. She seemed really interested in the issues. The Congresswoman is on a health committee with the House of Representatives, so there are exciting opportunities to work with her going forward.
The advocates were thrilled to connect with other people who share their same passion for the cause, and it was empowering to have them visit with their representatives and make their case on Capitol Hill.”
6:30pm – Director of NIDDK speaks at Kidney Summit
“We’re not only slowing the progress of kidney disease, but we’re looking at ways to reverse it, even with limited budgets,” he said. “If we don’t do it now, when are we going to do it? We’re making progress toward a cure, an eventual cure for this devastating disease.”
You can view his PowerPoint presentation about kidney disease in the United States and the work of the NIDDK by clicking this link.
6pm – The Kidney Patient Summit Congressional Reception
After a long day of congressional meetings, the 2015 advocates are settling in for the 2015 Kidney Patient Summit Congressional Reception. Bruce Skyer, CEO of the National Kidney Foundation, kicked off the reception with a warm welcome to the advocates and government representatives in attendance.
Jummy Olabanji, an anchor at ABC7 in D.C., is the master of ceremonies. She found out she had a genetic kidney disease after going to the doctor for high blood pressure. She’s also doing something about it — she changed her diet and has started running to keep her kidney disease in check.
“My kidney disease it is genetic, but for so many Americans it can be prevented,” she said. “Collectively, we can all get something done to change to course of kidney disease.”
Kevin Longino, who chairs the National Kidney Foundation’s advocacy committee, has a family history of kidney disease. Even knowing this, he was living a life with “too much coffee, too much protein and 60-80 hours of work a week”.
“Basically, I was doing everything wrong. The doctor said with the path I was on, I would need a transplant within 6 months,” Longino said. “I changed my lifestyle and I was able to postpone the need for dialysis for four years. I am a big believer in awareness of kidney disease and I am impressed with all the other organizations here that are supporting research and awareness of kidney disease.”
4:15pm – Meet the Advocate
Q and A with Drew Taylor of Indianapolis, Indiana
Q: Tell everyone a little about your story
Drew: “I’m a kidney patient. I was diagnosed with Alport Syndrome at the age of 6. I was getting medication and feeling better, but I went into kidney failure. Now I’m 11, almost 12, and I am on PD dialysis.
Q: How is it being young and on dialysis?
Drew: It’s hard, but as long as you do what the doctors tell you you’ll be fine! I can’t swim in rivers, lakes or oceans, but I can do pretty much everything else.
Q: What are you advocating for?
Drew: Kidney disease is very important issue and it affects many people. We want more funding for kidney disease research. Many doctors don’t know about Alport Syndrome, there is a lot of research that needs to be done still.
Q: How is it participating in the 2015 Kidney Patient Summit?
Drew: It’s pretty fun! I’m here with the Alport Syndrome Foundation. We went around and got to talk with a bunch of different people and after lunch we got a tour of the Capitol! I think it’s really cool, because not only was I able to come here and see sites, but I am able to be heard by very important people who represent my state.
3:30pm – Rescheduling Dialysis to Participate in D.C.
Curtis has been on in-center dialysis since his kidneys failed due to high blood pressure in 2001. Today he is supposed to be on dialysis, but he is missing his regular treatment schedule to participate in Capitol Hill meetings with his local representatives.
“I’m missing my treatment today,” he said. “I will be back on dialysis tomorrow, but to me this is important and we need to recognize and participate.”
The 2015 Kidney Patient Summit has exposed Curtis to a world of new ideas and people. He has met his first living kidney donor, and countless other who have different kidney diseases and causes.
“It’s been good to see some of the other faces of kidney disease,” he said. “Kidney patients need to be more active and find out what’s going on in the kidney community and how they can help. There’s no excuse for not getting involved!”
2pm – Colorado is for Kidney Advocates
Shar Carlyle of California and Haley Newkirk, Madison Ferner, Stacy Ferner and Sally Reif of Colorado met with Curtis Swager, Legislative Director for Cory Gardner of Colorado.
“I am going to major in political science at Colorado University next year, so this has been amazing for me,” she said. “I’ve learned so much about other diseases and perspectives from patients too. I’m honored to be here on Capitol Hill making a difference for kidney patients.”
12pm – Advocating for Immunosuppressive Coverage
JoAnn Villanueva, Bill Ruff and Suzanne Ruff on Capitol Hill
Suzanne donated a kidney to her sister JoAnn. They met with Katie Talento, Legislative Director for Senator Thom Tillis of North Carolina. They discussed immunosuppressive medication coverage under Medicare.
“Katie agreed with us that 36-month coverage for immunosuppressant medications under Medicare was archaic, and didn’t make financial sense when you realize the cost of having to put someone back on dialysis if they lose their transplant” said Bill Ruff.
For JoAnn, it was an emotional moment asking for Senator Tillis’ support.
“I was crying with Katie, because I am so passionate about extending coverage of immunosuppressive drugs,” she said. “If I stopped taking these medications, I would undo what Suzanne did, and she saved my life.
10:30am – First Meetings
Wanda Pierson, East Point, GA, NKF, has glomerulonephritis
Walt Hunt, Acworth, GA, is a patient with polycystic kidney disease (PKD)
Three advocates are speaking with John Eunice, General Counsel for Senator David Perdue of Georgia. They are presenting their case for their specific issues:
Alice is pushing the Living Organ Donor Protection Act. “I’m here because my brother, he has two five-year old twin boys, and he is subject to potential discrimination for long-term care and disability insurance because he was a living donor. I would like to see him protected.”
Wanda wants everyone to learn more about kidney disease and the issues around kidney disease. She was diagnosed two years ago, and didn’t know about kidney disease. “Both my parents passed away from cancer, everyone knows about cancer, but people don’t know about kidney disease.”
Walt Hunt, is pushing for an increase in basic research and trial work around kidney disease. His pitch is for an additional $2.1 billion for kidney disease studies through the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). He would also like Senator Perdue to support Medicare coverage for transplant recipients, “That would provide medications under Medicare for kidney recipients to keep their organs.”
9am – 10-Year Kidney-versary on Capitol Hill!
Sally Reif, Centennial, CO, living donor
Shar Carlyle San Rafael, CA, PKD patient and kidney recipient
On March 2, 2005, Shar Carlyle received a kidney from Sally Reif. At the 2015 Kidney Patient Summit, they are celebrating the tenth anniversary of their transplant procedure.
The pair met in a way that was new and unusual ten years ago — online. Shar had originally posted her profile on the newly created website Matching Donors, which attracted Sally’s attention for a school project.
“I was doing a paper for school on internet ethics, and thought the topic of organ donation would be interesting to pursue. That’s how I found Shar,” she said. “Initially, I called to ask about the process and found out her father and brother had both died from PKD… I decided to get tested and was a match.”
At the time, finding donors over the internet was rare, and many hospitals had policies against performing transplants on people who had met online. Nevertheless, the pair proceeded with the transplant. Both are healthy and well today. You can read more about Shar’s journey in this Mercury News article, and you can read about Sally’s decision to be a living donor in this Summit Daily article.
Shar describes herself as a “crunchy liberal”, while Sally would do just about anything to “get a Republican vote”. They are a testament that kidney issues transcend political lines and are living proof that friendships are stronger than politics.
“It’s something we can come together on. We are united to help kidney patients and improve quality of care and access to medications,” Shar said.
Both have done their part to advance the kidney cause. Sally has helped convince others to be living donors, while Shar volunteers for the PKD Foundation and NKF. She also conducts an educational program about kidneys and organ donation in under-served communities.
“She’s really using my kidney well,” Sally said.
8am – Coffee and Excitement
Darla donated a kidney to her son, Tyler. Both will walk to raise kidney disease awareness at the Dallas Kidney Walk.
Giving life to your child is an opportunity that comes once for most mothers; for Fort Worth resident Darla, it’s a calling that came twice.
As a teenager, her son Tyler was an active student into fitness and football. Despite being a vigilant mother, Darla never realized that Tyler was affected by kidney disease.
“He had blood pressure problems as a teenager,” said Darla. “But I never knew that high blood pressure is an indication of kidney disease.”
Tyler started getting seriously sick in 2010, with headaches and skyrocketing blood pressure. When he went to the emergency room, doctors said they didn’t know how he was still walking — Tyler’s kidneys had failed. He was placed on dialysis for survival.
“It sucked having to get my blood filtered three times a week,” Tyler said. “You were always tired and didn’t have time to do anything you wanted to do, or eat anything you wanted to eat.”
They began the process of putting Tyler on the organ wait list, a system that can take years to fulfill a person’s need for an organ. But Darla trumped the system by offering up one of her own kidneys to save her son.
“When they found out I was a match, I was so happy that I could give him my kidney,” said Darla. “I just wanted them to hurry up. I was afraid he wasn’t going to make it.”
Now, both fully recovered, Darla and Tyler have been profoundly changed by the organ donation experience.
“I have a second chance at life,” said Tyler. “I don’t take anything for granted now — everything is special, my wife, my kids, everything I have is a blessing.”
Throughout the ordeal, the family used information provided by the National Kidney Foundation to learn more about kidney disease, kidney failure, and dialysis. Now they are looking to give back.
“I am a kidney patient and a transplant patient and I want to help spread the word about organ donation,” said Tyler. “I still go back and visit the people at the dialysis clinic. There is a lot of fear and worry surrounding transplants. People just don’t know how awesome it is.”
Tyler and his mother also participate in the Dallas Kidney Walk to show their support.
“Kidney disease and organ donation is such a big part of our lives now,” Darla said. “By walking we can support research and prevention, which will help others like us in the future.”
In 2010, a routine physical exam revealed that Melanie A’s kidney were failing, she had no symptoms.
The 19-year-old, developmentally delayed Irvine resident was diagnosed with a kidney disease known as FSGS. She only had 27% kidney function and time was running out.
“Over the course of the next two years, we watched her kidney function slowly deteriorate down to 12%,” said Carol, Melanie’s mother.
Hoping to find a donor before Melanie needed dialysis, Carol and several family members all stepped forward to donate. However, none were suitable matches.
As the search ground on, Carol started a Facebook page called “Kidney for Melanie” and asked friends and family to “like” and “share” it with everyone they knew. The A’s also got involved with the National Kidney Foundation, speaking at events about their story and the need for organ donors.
Then, last year, Heather B., the niece in-law of Melanie’s Godfather, Mark J., stepped forward to be tested. She was a match. Heather, who is married and has three children, drove from Arizona to LA for the July 18, 2012 surgery. Heather’s kidney started working immediately after being placed in Melanie. The nurses in the hospital called it a “best-case scenario” for Melanie.
“My doctor’s goal was to go straight to transplant with no dialysis, so it felt great to be able to do that,” Melanie said. “I can eat all kinds of favorite foods now; before I was very limited and not happy about it.”
It’s been almost a year since Melanie received the kidney transplant that changed her life. The young woman is now thriving in an adult transition program, working in a department store and continuing to go to school.
The A’s are eager to share their story to help others who have to go through the organ donation process. The As, their friends and family members will be walking at this year’s Orange County Kidney Walk held on Sunday, June 2, at Aldrich Park at UC Irvine. Melanie will be cutting the ribbon to start off the event.
The Kidney Walk is a non-competitive stroll that raises funds to fight kidney disease through awareness, prevention and treatment programs. Walkers participate as individuals or form teams with family, friends or colleagues. Those interested in getting involved or supporting a walker can visit http://www.kidneywalk.org.
“We’re coming up on one year and we want to spread the message of organ donation,” said Carol. “We know there is so much more to be done and we are blessed to be a part of it.”
(Huntington Station, NY) – Receiving a kidney transplant gives those with kidney failure a second chance at life, but you rarely hear how those that donate their kidneys also have their lives forever changed.
Chris M., 38, from Huntington Station, NY, knew his life would go on a different path the moment he heard that his best friend’s kidneys were starting to fail.
“The day he told me he was going to start dialysis, I picked up the phone and called the hospital to see if I could be a donor,” Chris said.
Chris, who has worked as a Hip Hop DJ and On-Air Personality for Sirus XM and groups such as Naughty by Nature, was suddenly thrust into a new world of tests, physicals, nurses and medical jargon. Eventually, it was determined that Chris was a perfect match for his friend. Nine months after his first call to the hospital, Chris donated his kidney.
“I was the only person to get tested and I was a match,” Chris said. “The thing I remember most happened just before the surgery; I met a man who had been waiting four years for a kidney. He had tested with six family members and 20 other people and no one was ever a match. That made me realize how lucky we were. “
The ability to give his friend a new life profoundly changed Chris’ own outlook. He started volunteering with the National Kidney Foundation to talk with potential donors and recipients about living donation. He also started school again hoping to become a nurse.
“It has made me see things differently. I feel like I can do more,” Chris said. “I feel I have a type of compassion that I can share in a meaningful way with people.”
As part of his outreach efforts, Chris shares his story with hundreds who attend the Long Island Kidney Walk.
“I enjoy walks because it’s important to let people know about living donation,” Chris said. “It’s a beautiful thing, you just have to find the courage to do it.”
Written by Alli, a 2014 National Kidney Walk Ambassador
Hi everyone! I hope your summer is going just as well as mine. As kidney walk season approaches, I want to remind you to sign up for your local kidney walk! As your National Ambassador, I will be participating and talking at the 2014 NYC Kidney Walk on November 9th. If you would like to join my team visit http://www.KidneyWalk.org and search for ALLI’S ARMY.
Moreover, as summer is already half way over and we are approaching the hottest month of the year, don’t forget to drink tons of water and keep up with your diet! I have been feeling great and have kept up with my diet and exercise, so remember follow your doctor’s orders because they truly are life savors in the situation we are all in. Next time, I will be talking about back to school de-stressors (as I will finally be a SENIOR) that you can do to help your children with their chronic medical conditions. If you would like to contact me please post here and have a great rest of your summer!