PKD Life Finds a Way: Need Kidneys: Facebook in Stratford CT, Train Ads in Portland, OR

PKD Life

From Stratford Daily Voice, CT, by Donna Christopher and Karen Tensa

Retired Counselor From Bunnell High Needs Life-Saving Kidney Donation

FAIRFIELD, Conn. -- A former high school guidance counselor from Fairfield needs a kidney soon to replace her failing two.

Margaret Karbovanec has an inherited condition known as polycystic kidney disease.

She recently started a Facebook page and website to appeal to the public for help finding a live donor.

Meanwhile, Karbovanec continues to be on two deceased donor lists, one at Yale-New Haven Hospital and one at New York Presbyterian.

Between the two, she could potentially receive a kidney in as little as five years or up to 15 years.

"That might be too long," said Karbovanec who though not on dialysis yet, has only 13 percent of her own kidney function left.

"I have Stage 4 kidney disease. My doctors say it's better to receive a live donor kidney. I follow a very strict diet and try to stay healthy with walking and other ways."

Retired from Bunnell High School in Stratford Karbovanec was also an elementary school teacher in her career.

Today she enjoys bridge, travel, reading, cooking and has a full life, she said.

"I loved my career and love my life now. I want to get a kidney and continue with it," she said.

Turning to social media was a big step for this "very private person."

For a long time I didn't tell anyone I have kidney disease," she said. "I didn't use Facebook. I want people to know they can live with one kidney. If I get one they won't take the other two out, just add the third."

Karbovanec's mother had the same inherited kidney disease, but the relatives on "the other side" of her family had longevity.

"Since retiring I helped my elderly aunts, 102 and 104. I'm hoping to get rid of this problem and get on with my life."

Click here for Margaret Karbovanec's Facebook page and here for her website.

From KCBY, CBS Affiliate Coos Bay, Oregon, by Katherine Kisiel, KATU (Portland)

Man's family buys ad space on train: 'My brother needs a kidney'

PORTLAND, Ore. (KATU) — It's not a typical ad plastered on the side of the Max train. The headline: "My brother needs a kidney."

"It was the most effective thing we could imagine," said Barry Maynard. His adult son Jim suffers from polycystic kidney disease. Something that runs in the family.

Seventeen years ago Maynard donated his kidney to his wife. Now, his son is in need.

Maynard said they took a chance with the ad and it was promising at first.

"We had a flurry of responses," said Maynard.

He said nearly 25 people inquired. Ultimately, the donors fell through for one reason or another.

Then the family got another setback. Jim came down with pneumonia this winter.

"And that really took him down, and it failed rather rapidly after that," said Maynard.

Jim's scheduled for surgery next month to remove his kidney that's now the size of a football. If he doesn't get a healthy kidney by then, he'll continue with dialysis.

"Dialysis keeps you alive, but it's a hard life and there are a lot of limitations with it," said Laura Ellsworth, with Donate Life NW.

Ellsworth said there are many families who can identify with the Maynards. She said there are 800 people in Oregon and Southwest Washington on the waiting list for a new kidney. And the wait time is between three and five years.

She said many people are now turning to ads and social media to get their loved ones help.

"Their health is on hold. They're getting by day to day, and they're looking at that second chance at life and health any way they can find it," said Ellsworth.

PKD Life: Enid, OK; PKD Research: Symposium at Harvard, PKD Gene Detection, Epidemiology Forecast

PKD Life

From Enid News, OK, By James Neal

New group improving education, support for kidney disease patients

Patients diagnosed with kidney disease are faced with new challenges in their lives, and many see the diagnosis as the end of life as they know it. A new support group met Wednesday in hopes of dispelling those fears, and giving patients the education and support they need.

The Polycystic Kidney Disease Support Group had its inaugural meeting in a basement classroom at St. Mary's Regional Medical Center, with almost 40 new members in attendance. They gathered to gain education on their disease and to support each other.

Dr. Rashmi Vijayvargiya, attending nephrologist and medical director of the dialysis unit at St. Mary's, said the purpose of the group is to provide kidney disease patients with support, education on disease prevention and treatment, and to "improve the quality of care for patients with chronic kidney disease."

Vijayvargiya said mutual support is essential for kidney disease patients.

"They feel their life is falling apart," Vijayvargiya said, "but when they see other patients who have been there, they see they can continue their life and it gives them faith and hope to continue their life.

"They feel this is the end of life, and their feeling is, 'Am I going to live?' I explain 'This is just a phase of life, we're going to get through this and we're going to have a good quality of life.'"

Vijayvargiya said the support group is not associated with any particular hospital, and is open to any kidney disease patient in the community.

In addition to mutual support, Vijayvargiya told the assembled patients she hoped the group would facilitate education on their disease and its treatment.

"I believe knowledge is power," Vijayvargiya said. "To educate patients is the highest form of care we can give. The more we educate patients the more they will be able to take care of themselves."

Vijayvargiya told the group members early detection and intervention is essential to improving outcomes in treating kidney disease.

She said patients can take steps like quitting smoking, exercising and managing their diets, and control kidney disease risk factors like obesity, high cholesterol and high blood pressure.

Melissa Thomas, who worked with Vijayvargiya to found the support group, said she hopes education and support will help fellow patients to take control of their care.

"I wanted there to be some education to it," Thomas said in an earlier News & Eagle interview. "Even through we cannot control the progression of the disease there are things we can do to help control it. We want the support group to be some education on how we can help ourselves, what we should and should not be doing."

Thomas was diagnosed six years ago with PKD and currently is on a transplant list for a new kidney.

She stressed to her fellow patients that kidney disease, even to the point of being placed on the transplant list, does not have to stop your daily activities. She still works full-time and volunteers with Habitat for Humanity.

Major Rowe rose to speak to the group, and said it's not uncommon to be scared when first diagnosed with kidney disease — especially without a support group.

"I had nothing to start with," Rowe said, "so you're scared every time you turn around."

Rowe underwent dialysis care for three years, and received a kidney transplant last year. He said the key to success in that process is to keep looking to the future, and have a positive attitude.

"You should enter this with looking forward," Rowe said. "Don't put yourself down or others down, and be congenial with those helping with your care."

Barbara Cink, who manages her dialysis with an in-home machine, said her diagnosis came as a shock.

"I was in a very dark place," Cink said. "If it had not been for my husband and family at home it would have been really terrible."

"I know it sounds scary," Cink said. But, she added, patients can overcome that fear "with the trust you have in your physician, with your ability to learn what's best for you, and by really taking your training seriously."

Dallas Winter sought to encourage his fellow patients, especially those early in the process. Winter takes an all-night dialysis treatment each night in his home. And, at age 90, he still enjoys fishing and looks forward to resuming bowling.

"It's no big deal," Winter told his fellow patients of dialysis. "You can still handle it. It's going to be fine."

For more information on the support group call Vijayvargiya at (580) 233-4444. The group will meet from 5:30-7 p.m. the third Friday of every month in basement classroom C at St. Mary's Regional Medical Center.



PKD Research

From EventBrite.com

10th Annual Symposium on Polycystic Kidney Disease

Free Symposium: 

This symposium is organized by the Harvard Center for Polycystic Kidney Disease Research (Director Dr. Jing Zhou). We will update you with the most recent advances in the cilia-PKD field and progresses made by members of the PKD Center at several Harvard Institutions in the past year and other distinguished investigators of the field.

All undergraduate, graduate students, medical students, residents, clinical and research fellows, physicians and basic science faculty members who are interested in kidney disease, cilia or epithelial biology would benefit from attending this conference. See more information at the Center website: http://pkdcenter.bwh.harvard.edu.


DATE AND TIME


Mon, May 8, 2017

8:00 AM – 5:00 PM EDT

Add to Calendar

LOCATION


The Joseph B. Martin Conference Center at Harvard Medical School

Boston, MA | The Joseph B. Martin Conference Center at Harvard Medical School (Bray Room)

77 Avenue Louis Pasteur

Boston, Massachusetts 02115

View Map

From MedGadget

Latest News on Polycystic kidney disease (PKD)-Epidemiology Forecast To 2023 Analysis

Summary
Orbis Research Present’s Polycystic kidney disease (PKD)-Epidemiology Forecast To 2023 And has been prepared based on an in-depth market analysis with inputs from industry experts.

Description

“Polycystic kidney disease (PKD) – Epidemiology Forecast To 2023” provides an overview of the epidemiology trends of Polycystic kidney disease (PKD) in seven major markets (US, France, Germany, Italy, Spain, UK and Japan). It includes 10 years epidemiology historical and forecasted data of Polycystic kidney disease (PKD) prevalent or incident cases segmented by age, sex and subpopulations. The Report also discusses the prevailing risk factors, disease burden with special emphasis on the unmet medical need associated with the Polycystic kidney disease (PKD). The report is built using data and information sourced from proprietary databases, primary and secondary research and in-house Forecast model analysis by team of industry experts.

Request a sample of this report @ http://www.orbisresearch.com/contacts/request-sample/220950

Scope of the Report
The Report includes the prevalent population and how will it change over the next eight years.
Prevalent or incident cases segmented by age and sex.
Coverage of key Polycystic kidney disease (PKD) subpopulations and its prevalent or incident cases
The key differences in epidemiology patterns across the seven market segments

Purchase a copy of this report @ http://www.orbisresearch.com/contact/purchase/220950 .

From NIH, National Institutes of Health

Pkd mutations and evaluation of same (U.S. Patent Number 20100047785 A1)

The present invention relates to methods of detecting novel mutations in a PKD1 and/or PKD2 gene that have been determined to be associated with autosomal dominant polycystic kidney disease (ADPKD) in order to detect or predict the occurrence of ADPKD in an individual. For more information please contact Johns Hopkins University's Technology Ventures office.

PKD Screening Kidney Donors, PKD Research: Targeting MicroRNA-17, Gift of Life: Kerrville, TX

Kidney Donors

From MedScape.com, American Journal of Transplantation

Screening of Living Kidney Donors for Genetic Diseases Using a Comprehensive Genetic Testing Strategy


Abstract

Related living kidney donors (LKDs) are at higher risk of end-stage renal disease (ESRD) compared with unrelated LKDs. A genetic panel was developed to screen 115 genes associated with renal diseases. We used this panel to screen six negative controls, four transplant candidates with presumed genetic renal disease and six related LKDs. After removing common variants, pathogenicity was predicted using six algorithms to score genetic variants based on conservation and function. All variants were evaluated in the context of patient phenotype and clinical data. We identified causal variants in three of the four transplant candidates. Two patients with a family history of autosomal dominant polycystic kidney disease segregated variants in PKD1. These findings excluded genetic risk in three of four relatives accepted as potential LKDs. A third patient with an atypical history for Alport syndrome had a splice site mutation in COL4A5. This pathogenic variant was excluded in a sibling accepted as an LKD. In another patient with a strong family history of ESRD, a negative genetic screen combined with negative comparative genomic hybridization in the recipient facilitated counseling of the related donor. This genetic renal disease panel will allow rapid, efficient and cost-effective evaluation of related LKDs.

Introduction

Kidney transplantation is superior to long-term dialysis for the management of end-stage renal disease (ESRD) because it provides greater long-term survival and better quality of life. Nevertheless, there is an ever-increasing gap between the need for transplantation and the availability of donor kidneys, with >120 000 patients currently on the deceased donor waitlist in the United States alone. This has resulted in an increasing push to encourage living donation, and today there are almost as many living donors as deceased donors annually in the United States.[1] Living kidney donor (LKD) transplants, for those fortunate to receive one, bypass the long waiting time, reduce the likelihood of death while waiting and provide better long-term allograft and recipient survival compared with deceased donor kidneys.[2,3] In some parts of the world, LKDs are the principal or only source of transplanted organs, and where long-term dialysis is prohibitively expensive or unavailable, LKD transplants provide the only available therapy for ESRD.

Living donor nephrectomy is generally considered acceptable medical practice, even though there are real risks for the donor, including death, serious injury and failure of the remaining kidney. Recent retrospective studies examining long-term outcomes of living donation compared with matched nondonor cohorts reported an increased 15-year and lifetime risk of ESRD for LKDs.[4,5] Although the absolute risk is arguably small, the relative risk is 30 per 10 000 over 15 years and 90 per 10 000 over a lifetime compared with four per 10 000 and 14 per 10 000 in matched controls. Within subpopulations, black men have a 15-year risk of 90 per 10 000 compared with just nine per 10 000 for white women.[4]Although not statistically significant, there is a twofold increased risk of ESRD among biologically related LKDs compared with unrelated LKDs.[4] The increased risk may reflect shared inheritance of genetic variants that are deleterious or a common environmental exposure that increases susceptibility to kidney disease.

In the United States, 40% of all LKDs are biologically related to their recipients.[1] Many are siblings or adult children of patients with ESRD and are in their third and fourth decades of life, making it difficult to predict future risk of kidney disease. In addition, to guide focused genetic testing of related family members for a specific inherited disease, the transplant recipient's cause of ESRD must be known. Together, diabetes and hypertension are the two most important reported causes of ESRD and account for 60% of the waitlist.[1,6] Most patients with diabetes and/or hypertension and chronic kidney disease (CKD) do not receive a kidney biopsy to verify the diagnosis, and recent studies estimated that as many as 35% of patients with presumed diabetic or hypertensive nephropathy may actually have an alternative diagnosis.[7–9]

Traditionally, establishing and/or confirming the diagnosis of a presumed genetic disease has required Sanger sequencing of the suspected gene for pathogenic variants.[10] When candidate genes are large, like COL4A5, sequencing is costly and time consuming. When the disease is heterogeneous, like focal segmental glomerulosclerosis (FSGS), serial gene-by-gene screening approaches are inefficient and impractical. These constraints can be largely overcome by using high-throughput approaches to DNA sequencing (i.e. next-generation sequencing [NGS] or massively parallel sequencing [MPS]) to sequence a large number of genes simultaneously. Targeted NGS panels have been developed to evaluate patients with a single phenotype, such as steroid-resistant nephrotic syndrome, FSGS and some ciliopathies.[11–14]

We developed a targeted renal panel that includes 115 genes implicated in a variety of kidney diseases to facilitate a diagnosis in patients with suspected genetic renal disease. We validated this panel for the evaluation of selected LKDs in whom the related transplant recipient's phenotype raised suspicion of or clearly indicated an inherited renal disease. We reported our findings from a pilot study of six controls, four transplant candidates and their six related donors. [Read more]

PKD Research

From Nature.com

MicroRNA-17: a new drug target for ADPKD

New data suggest that the microRNA-17 (miR-17) family promotes the progression of autosomal dominant polycystic kidney disease (ADPKD) and is a promising target for therapy. “Anti-miRs work best in the liver and kidney and have a long duration of action,” explains researcher Vishal Patel. “These attributes make them ideal therapeutic…

Gift of Life

From Hill Country Community Journal, by Tammy Prout

When KPD officer needs kidney, locals, girlfriend respond

Misty Cass (left) has no doubts about donating a kidney to save the life of her boyfriend, Kerrville Police Department Investigator Darin Trahan (right). Both of Trahan’s kidneys are failing due to Polycystic Kidney Disease.

The remarkable chain of events and community support have been overwhelming to a local police officer, who will be receiving a new kidney and a new chance at life and in the process save the lives of many others.

Kerrville Police Department Investigator Darin Trahan thought he had some sort of infection when he made a doctor’s appointment in 2005.

He expected to receive the usual prescription for antibiotics and then he would go on with his life. Instead, Trahan discovered his illness could someday take his life.

“I thought I had a kidney infection or something,” Trahan said. “But they came back and said I had Polycystic Kidney Disease.”

Trahan said he was told there was no cure for the disease and that he would eventually need a kidney transplant, as the disease is affecting both of his kidneys.

“They said to go on with my life and try to eat healthy and be active,” Trahan said. “They said, eventually my kidneys would begin to fail and then we would look at getting on a kidney transplant list.”

Trahan said doctors told him that his kidneys would have to be functioning at less than 20 percent capacity before being accepted on the national organ donor list.

So Trahan went about his daily routine, never missed a day of work, and quietly dealt with the reality of his illness.

“I didn’t really tell anyone,” Trahan said. “I didn’t even tell my children. I felt there was no reason to worry anyone at that time. I decided to wait and tell them when it was absolutely necessary.”

It became necessary nearly 11 years later, when Trahan’s kidney function began to drastically decrease.

“My kidney function is now at 17 percent,” Trahan said.

Trahan began the process of being accepted into the organ donation program. He made an appointment at the Methodist Specialty and Transplant Hospital to begin testing, so that a match could be identified. He was accompanied by his girlfriend of nearly two years, Misty Cass.

Cass chose to also be tested to see if she was a match, however, she was not.

The remarkable chain of events that were alluded to earlier begin here.

While Cass was not a blood match for Trahan, she was told she could become an “Altruistic Donor,” which means that she and Trahan would be paired in a donor pool. Cass’ kidney would go to someone who was paired with an altruistic donor that matched Trahan.

“The process is very complicated,” Trahan said. “In total, there will be 16 people involved, providing kidney transplants for eight people.”

Trahan said the surgeries will take two days to complete and will begin this week on Wednesday, March 8.

“Misty and I will go for our pre-op on Monday and Tuesday,” Trahan said.

When speaking of Cass’ willingness to donate a kidney on his behalf, Trahan gets a little emotional.

“She’s my hero,” Trahan said. “I’ve told her she didn’t have to do it. I’ve tried to talk her out of it.”

Cass said she did not hesitate when presented with the opportunity.

“He is a good man. He has served his community well and I love him,” Cass said. “This (surgery) will save his life. To be honest, I would do it for anyone I care about.”

Cass is not the only person who stepped up to help Trahan. In fact, the community support for Trahan, a public servant, has been phenomenal.

“After I told my family about my disease, my brother posted something on Facebook, asking for prayers,” Trahan said. “Just from that post, I have received offers from at least 40-50 people, who said they would be willing to get to tested to donate as well. I told them ‘thank you,’ and explained how much I appreciated their offer, but I have a donor.”

One donor, however, would not relent.

Trahan said Caitlin Eubank, the wife of a former KPD officer, was insistent that she help. Knowing that she was not a blood-match, but could assist in being an altruistic donor fueled Eubank’s cause. [Read more]

PKD Kidney Patient Summit: Washington DC, PKD Families Needs Kidney:Council Bluffs, New Orleans

PKD Community

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

Clarinda native seeks transplant to overcome hereditary kidney disease

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.

From The Times-Picayune, By Celeste Turner

Two New Orleans area residents battle kidney disease, lean on hope through transplants

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.