From Yahoo News
Advocates Across U.S. to Bring "My Kidneys, My Life" Mantra to Washington DC for 4th Annual Kidney Patient Summit
Nearly 150 advocates from six kidney organizations around the country will converge on Capitol Hill, March 6-7, 2017, to meet personally with lawmakers and put a human face on kidney disease during the 4thAnnual Kidney Patient Summit organized and led by the National Kidney Foundation (NKF). This largest event to date brings together, in a unified voice, NKF's Kidney Advocacy Committee members and advocates from Alport Syndrome Foundation, Polycystic Kidney Disease Foundation, NephCure Kidney International, Home Dialyzors United and American Association of Kidney Patients.
Among the attendees, 70 advocates selected by NKF to represent nearly all 50 states – learn who they are– will share their stories and urge Members of Congress to support a pilot program which seeks to improve early detection, care and outcomes for people with chronic kidney disease (CKD); support H.R. 1270, The Living Donor Protection Act 2017, which was just introduced by Representatives Jerrold Nadler (D-NY) and Jaime Herrera Beutler (R-WA) and would prohibit discrimination in life, disability or long-term care insurance for living organ donors and add living donation to the Family Medical Leave Act; and support funding for CKD programs run by the Centers for Disease Control and Prevention, National Institute of Diabetes and Digestive and Kidney Diseases, and Health Resources and Services Administration.
At the Summit, individuals who have kidney disease, dialysis patients, living donors, family members and caregivers will be united by the affirmation and hashtag "My Kidneys, My Life" (#MyKidneysMyLife) to underscore the direct relationship between having at least one healthy kidney and living at all.
"Coming together for the Kidney Patient Summit is personal for me and the many people traveling from throughout the country who seek to be heard and affect real change for those suffering from kidney disease," said National Kidney Foundation CEO Kevin Longino, who received a kidney transplant 12 years ago. "'My Kidneys, My Life' is not just a slogan. It's a mantra based on facts and a plea for more public awareness," he added.
More than 26 million Americans are affected by kidney disease but 90 percent don't even know they have it. Once kidneys fail, dialysis or a transplant is needed just to stay alive.
In addition to advocates' visits with lawmakers scheduled on Tuesday, March 7, this year, a special Summit press conference focused on living donation will be held the same day from 1 -2 p.m. EST, on Capitol Hill in 902 Hart Senate Office Building. Living organ donors and kidney recipients will share their stories, demonstrate the urgent need to increase living donation, and provide hope to more than 100,000 Americans waiting for a kidney transplant right now.
Press conference speakers will include: Kevin Longino, CEO, NKF; Representative Brett Guthrie, (R-KY); Kent Bressler, recipient, Kerrville, TX; Kelly Cline, mother of recipient Hannah Shelton, Glen Allen, VA; Alex Fox, donor, Star, ID; Ewo, Harrell, recipient, Providence, RI; Christopher Melz, donor, Huntington Station, NY; Luis and Noelia Rodriguez, recipient and donor, Sioux Falls, SD; Matthew Scroggy, recipient, Columbus, OH; and Joe Vohs, donor, Half Moon Bay, CA. See snapshots of their stories .
The Summit kicks off Monday, March 6, at the Holiday Inn Washington Capitol with a morning meeting of the Kidney Advocacy Committee, comprised of the advocates along with their family members and care partners, to use their collective experiences to champion NKF's priorities. This meeting will be followed by the annual Advocacy Awards Presentation luncheon, the Summit training to prepare advocates for their Tuesday visits on Capitol Hill, then dinner and organization presentations.
Whether traveling from far away or locally; or by air, rails, bus or car, the Summit has become a must-attend event – especially for patients despite constant health challenges, medical appointments, and reliance on dialysis. Event organizers work personally with patients well in advance to help accommodate any special needs they will have while staying in Washington, DC. This includes setting up on-site or local dialysis treatments, shipping dialysis supplies to the hotel, providing refrigerators in rooms for medications, allowing wheelchair or scooter access, and addressing dietary requests or restrictions.
Kidney Disease Facts
1 in 3 American adults is at risk for kidney disease. 26 million American adults have kidney disease—and most aren't aware of it. Risk factors for kidney disease include diabetes, high blood pressure, family history, and age 60+. People of African American; Hispanic; Native American; Asian; or Pacific Islander descent are at increased risk for developing the disease. African Americans are 3 ½ times more likely, and Hispanics 1 ½ times more likely, to experience kidney failure.
The National Kidney Foundation (NKF) is the largest, most comprehensive and longstanding organization dedicated to the awareness, prevention and treatment of kidney disease. For more information about the NKF visit www.kidney.org.
To view the original version on PR Newswire, visit:http://www.prnewswire.com/news-releases/advocates-across-us-to-bring-my-kidneys-my-life-mantra-to-washington-dc-for-4th-annual-kidney-patient-summit-300416773.html
PKD Life
From The Daily Non Pareil, Council Bluffs, Iowa, By Kristan Gray
A southwest Iowa man is one of 174 patients from Nebraska Medicine who are awaiting a new kidney.
Chris Hitt, a 1988 Clarinda High School graduate, now lives in Bennington, Nebraska, near Nebraska Medicine where he visits once a month for blood testing.
As he faces his 47th birthday on March 16, he’s praying to be matched with a donor.
“My kidneys are both the size of footballs,” Hitt said. “I just got out of the hospital this past week. I’m blessed that I haven’t had too many issues until now, but I have had some cysts burst the past few years.
“I’m at what they call stage 5, so I should be on dialysis. But, they’re functioning just enough to get by – at 10 percent between the two of them.”
Chris was diagnosed 21 years ago but only qualified to be on the transplant waiting list last year.
While polycystic kidney disease can affect cognitive ability, Hitt said his concentration has been only mildly affected. He continues to work full time as an engineer for Phillips Manufacturing in Omaha.
The disease runs in his family. Although Chris’s brother Jesse does not have the disease, his brother Ben received a kidney from their father, Steve Hitt, in 2008. His mother, Ann Hitt, has the disease as well.
His grandfather was a research doctor at the University of Kansas and studied the disease aggressively in the 1960s and ‘70s, even performed home dialysis for Chris’ grandmother in the 1970s and ‘80s.
For several years, Chris and his mother participated in the study his grandfather started at KU, he added.
Chris’ wife, Amy Hitt, said high blood pressure prevents her and her extended family members from becoming donors.
“But there’s definitely someone out there who will be a match,” she said. “Chris has been really lucky to be able to play normally with our son, Caleb, who’s 8. The wonderful thing is that he’s adopted, so we don’t have to worry about him having this genetic disease.”
The living donor program at Nebraska Medicine makes it possible for a donor who is not a match for Chris to possibly match with any of the 120,000 on the national waiting list.
Vicki Hunter, kidney and pancreas transplant manager at Nebraska Medicine, said those who wish to donate can first complete a brief online questionnaire. Then, the review process can take up to eight weeks.
“We do vigorous testing first, and the entire process is free of cost for donors in every way — the recipient’s insurance pays for everything,” Hunter said. “We want to ensure our patients that donors can live with just one kidney. Even those who do not have a gall bladder donate.”
Dr. Arika Hoffman, a transplant surgeon at Nebraska Medicine, said there are no dietary restrictions. Patients who donate can live normal lives with a normal lifespan. That includes pregnancy after donation, returning to work and being as active as they were before donating a kidney.
Because the screening process is stringent, Hoffman said only the healthiest people may donate.
“We do anywhere from 115 to 170 transplants every year. There’s always a small risk for patients who don’t take care of themselves afterward, but it’s just the same as anyone who doesn’t stay healthy,” Hoffman said.
Once approved, the surgery is most often scheduled within a month’s time. The donor has no restrictions after about six weeks. During that time, they cannot lift more than 10 pounds. Most donors go back to work after about two weeks. Those who are concerned about unpaid time off of work can put their minds at ease: The National Living Kidney Donor Fund can replace the donor’s loss of time from work.
The success rate of a living donor kidney regaining function in a new body is more than 99 percent, Hoffman said.
“I want to be a part of something that helps bring joy to patients — that gives them their life back so they can spend time with family and friends and do all they want to do,” she said. “The day we call patients and tell them they’re going to get a transplant is the best day of their lives. It’s a surreal job we work in every day.”
Hunter added that she and Hoffman are both passionate about transplantation and are vested in every patient.
“I encourage everyone out there to look at the numbers — there are over 120,000 people in America waiting for an organ transplant,” Hunter said. “There are 174 patients on the active waiting list in Nebraska who need a kidney. We only need one for each patient. If you’re medically and psychologically stable, please think about giving them back a chance at life.”
To register for donation, visit secure.nebraskamed.com/livingdonor. To specify an attempt to match with Christopher Hitt, his date of birth is March 16, 1970.
This is a tale of two local survivors, Collin Berg, a 13-year-old Holy Cross High School seventh grader who recently received a new kidney, and Agnieszka Nance, a 43-year-old Executive Director of the Center for Public Service at Tulane University, who is waiting for a kidney.
Both had similar dire health needs, but different personal experiences with kidney disease. Berg, who lives in Metairie, was born with a rare genetic disorder called Autosomal Recessive Polycystic Kidney disease (ARPKD), and his family knew that at some point, he would need a transplant.
"At 6 months old, we knew Collin was born with ARPKD," said Chris Berg, Collin's father. "We were trying to get the surgery done before Collin would need dialysis.
"Both my wife and I took the test to see if we could donate a kidney and, surprisingly, we were both compatible. But, we both felt my wife was a better donor. We both knew the day would come when Collin would need surgery."
On Jan. 31, 2017, Berg and his mother, Karen, underwent surgery. Doctors removed one of Karen's kidneys and transplanted it into her son.
Notably, Karen was the first living donor of a kidney at Tulane Lakeside Hospital, and Berg was the first recipient of a kidney from a living donor at this hospital in Metairie. After a total of five surgeries, 32 staples and more than three weeks in the hospital, Berg is home now but, still waiting for his new kidney to fully "wake up."
"We are waiting to hear from the kidney doctor," said Chris, who was at his son's bedside throughout the ordeal. "We were excited when they put the kidney in Collin because everything was going good."
It hasn't been smooth sailing, however. Right after the transplant surgery, Berg took a turn for the worse.
"Then, the ultrasound showed that the kidney was not receiving good blood flow, and hours later, Collin had a massive arterial bleed-out on the table. His blood pressure plummeted. I stood there in shock, while everyone tried to stop the bleeding," Chris said.
The words no father ever wants to hear were uttered next.
"We're losing him," Chris overheard the doctor say about his son.
"The doctors said that the kidney had no color, so they were talking about taking the kidney out to save (Berg's) life," Chris said.
By the next morning, Chris was awakened by good news.
"It's a miracle. ...The kidney is pink and it has blood in it," he was told.
The future is still uncertain.
"We are now waiting for the nuclear test to tell us how viable this kidney can be," Chris said. "This test results will indicate if the kidney is functioning properly, because there is still a chance he could lose this kidney."
Nance is also dealing with uncertainty.
Nance lives Uptown with her husband David and four dogs. To all around her, she's the picture of health and she's in the business of making others healthier.
Nance is an exercise instructor in her spare time, teaching eight classes a week at Franco's Athletic Club on Magazine Street. Two years ago, however, she noticed a strange allergic skin rash and some weird swelling that prompted a doctor's visit.
She was stunned to get a diagnosis of end stage kidney disease in April 2015.
"My team of doctors (allergy specialist and my nephrologists) ran all kinds of blood and urine tests and determined that I was in a dire need of dialysis. I was 41 at that time," stated Nance, who moved to New Orleans with David a week before Hurricane Katrina. "I feel like we talk about other problems like heart disease, or lung disease and do not address the kidneys. Kidney disease is a silent killer."
For patients like Nance, end-stage kidney or renal disease (ESRD) is the final stage of chronic kidney disease in which the kidneys no longer function well enough to meet the needs of daily life. The treatments for ESRD are dialysis or kidney transplant.
"There is no known solution to kidney failure," Nance explained. "Kidneys don't regenerate themselves so patients with that disease have to dialyze either daily or multiple times per week. I opted to do hemodialysis, which means that I go to a clinic three times a week for five-hours-long treatment. The treatment is not painful - however, it can be draining. During hemodialysis, a machine is pumping my blood out, cleaning it and sending it back to my veins."
The treatments are layered into an already high-octane life for Nance. But hemodialysis isn't the final solution. She yearns for a kidney transplant so her life can return to normal.
"Transplant is a wonderful way of ending dialysis and live a free life," she said.
In the meantime, Nance does everything she can to remain healthy and active while waiting for a kidney. But it's hard to do "normal" activities. Even going to lunch with friends is hard because her diet is severely limited while on hemodialysis. She can't eat bananas, potatoes, tomatoes, cheese or beans as well as foods with sodium. Even water is restricted.
"For me, the most difficult is the fluid restriction. We are allowed 30 oz. a day but I personally had to go lower to 15 oz. (about one bottle) per day," Nance said. "Since your kidneys filter all the liquids, you want to eliminate the pressure on the organs particularly the heart and limit your fluid intake."
Under the supervision of the staff at Tulane Hospital, Nance is presently waiting for a kidney transplant, and urges everyone to sign up as an organ donor when you apply for driver's license.
"Right now, I'm still waiting to receive a transplant. The average waiting time for a kidney transplant in the U.S. is 3.6 years," Nance said. "I am very fortunate to have family members and friends offering to get tested to be a donor. I am also listed on the UNOS list (https://www.unos.org/) for a transplant from a deceased donor. I'd really like to encourage anyone to put the little heart on your driver's license showing the willingness to donate your organs. One donor can save up to eight lives."
Since kidneys for transplantation can come from two sources, a living donor or a deceased donor, MatchingDonors.com, a nonprofit and the nation's largest living organ donor organization, can help facilitate the process by finding and registering living organ donors for people needing organ transplants in the United States.
Statistics show that on average approximately 22 people die every day while waiting on the government's deceased donor list. And those that live and get a transplant from that list wait seven to 12 years for their organ. In an effort to combat that waiting period, MatchingDonors has provided a forum for all people in need of lifesaving transplants to match with living, altruistic donors. Many patients may receive their kidney transplant within six months of registering on MatchingDonors.com.
Luckily for Berg, the wait for a kidney transplant is over and he has left the hospital with his new working kidney.
"Doctor said that Collin's reaction was rare in the hospital," Chris said. "Collin still has a drain and a pick line but they don't see a rejection. His blood work is good. But, every week, we will go for blood work and continue to tweak all his medication."
Nance is still waiting, thriving on hope despite some recent disappointments. Twice, she has had living donors volunteer only to get medically disqualified before transplant.
"I feel like my disability is special because it is not visible. I am thankful because I am physically able to do things that some healthy people cannot do. And yes, I'm there to support people on their journey to health and fitness, showing that it is possible to be healthy and strong, and overcome any obstacles," Nance said.
Celeste Turner is a fitness guru who writes news about East Jefferson and around the New Orleans metro area. Please send any health and fitness news, special events or East Jefferson news items to: cmturner10966@gmail.com.
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