Monday, February 25, 2019

WALKING FOR KIDNEY TRANSPLANTS


WALKING FOR KIDNEY TRANSPLANTS

By Jim Myers, AAKP Board Member, Ambassador

Posted: February 5, 2019



I have often been asked why I take such long walks. I was in my transplant doctor’s office a few months back. He gave me that look. You know the look. Like that look your Dad used too give you before the stern lecture was coming. The serious discussion lecture. He told me I was not getting enough exercise, and I should try to get out more. He suggested walking. I’ve never been an athlete. I have avoided exercise in the past. I’ve always been an academic. I hated gym class. But I knew he was right. I spend a lot of time on my computer or phone. I’m known for my dedication (some have called it an addiction) to social media. As the proud recipient of AAKP’s inaugural National Social Media Education & Advocacy Award and as developer of 60 Kidney Pages and 50 Kidney Group pages, as well as nine electronic newspapers and 10+ blog sites, I knew my time online wasn’t going to slow down – but  I also knew I had to get out and move more. But in my mind, it had to mean something more than just exercise for me to commit to long-term.

At the same time, I belonged to a group (and still do), Get Loud for Kidneys. Our leader, Ashley Somics, suggested we do something with movement, wearing our t-shirts to indicate that this movement was kidney related. I accepted that challenge. Also, about that same time, I lost a dear friend, a great kidney advocate, fellow AAKP Ambassador and a man waiting on the list for a kidney transplant, Bill Murray.

In my opinion, Bill was the greatest kidney advocate in America. He frequently travelled to kidney events, or schools to speak. He was constantly advocating for kidney patients. He had a heart attack, but that did not stop him. His advocacy took him to walks for children with kidney disease and eventually to the White House with the leadership of AAKP - an invitee to the Rose Garden as President Trump spoke on the issue of prescription medication costs with HHS Secretary Alex Azar.

Bill and I would talk a couple of times a week and these were great discussions. He was once at a kidney summit on Capitol Hill where he went from walking to a scooter, but that did not stop him from making his Congressional visits. Injuring his thumb and rolling that scooter over did not stop him. He was determined to make a difference. He called me after his last heart attack. Typical Bill, he wanted to start “scheming” about a number of kidney issues, and how we’d get others involved. He told me he’d have to take it easy for a while, but he’d be back out there very soon. Two days later he was gone.




I wanted to remember him on my walks. I wanted to set an example for others and I wanted my walks to be meaningful to the kidney community at-large. Bill had been on the waiting list for five years. I have dozens of other friends on that list. I’ve been lucky. I was transplanted after a four year wait. Bill was not so lucky. I have other friends and family members I have lost while waiting. I wanted to encourage other people to act. I wanted to encourage them to share on social media and to advocate for the transplants of those in need. I wanted my walks to help those who are seeking a kidney. I could combine all my activities into those walks. I could help myself and others by dedicating those walks to those seeking a kidney, waiting on that list - like AAKP member Melissa Tuff from Mel Needs a Kidney on Facebook – she is an example of someone who is still waiting and someone I dedicate my walks to.

(Data at left from https://optn.transplant.hrsa.gov/data/)

I feel that only a 20% conversion rate for people that wish to receive a kidney transplant is too low. We need more donors for kidney failure patients. I hope my personal walks, in some small way, help motivate people to donate life to many of our needy kidney friends and family. If you see posts on social media requesting a kidney transplant, please share and retweet. If you are healthy and desire to help, please call your nearest transplant center and offer to test for someone in need. If you have a friend or neighbor, work buddy, church member or other acquaintance in need of a kidney, please consider sharing your spare. Kidney disease affects 40 million Americans, so there is a very good chance you do/will know someone. You can do as well with one as you can with two. Please give serious consideration to donating a kidney. I’ll keep walking until there is no waiting list.

AAKP Celebrates 50th Anniversary with Walk for Kidney Disease Awareness!

AAKP will host its inaugural kidney disease awareness walk in December 2019. The walk will raise awareness of kidney disease among communities and Americans across the U.S. and raise funds to support AAKP’s patient educational programs and advocacy efforts. There are three easy ways to participate! So build a team, get involved and help AAKP raise the true, independent voice of kidney patients!

In-person: Join us in Tampa, FL to participate in the live event (date to be announced).

Across America: Build a team of friends and family members and get out and walk in your local community. Take team pictures, selfies and send to AAKP the day of the event! AAKP will be LIVE on social media during walk hours posting pictures of our friends across the U.S. that are participating remotely!

Virtually: Unable to join us live or walk in your local community – no worries! You can still build a “virtual” team and help increase awareness of kidney disease and share all the pictures from the event and across the U.S.!

AAKP’s Walk registration and fundraising opportunities will open in the spring – continue to visit www.aakp.org/50thanniversary for additional details.

Jim Myers

Membership in AAKP is Free

https://aakp.org/advocacy/walking-for-kidney-transplants/

KIDNEY PATIENTS SHED LIGHT ON DEADLY DISEASE DURING KIDNEY MONTH


KIDNEY PATIENTS SHED LIGHT ON DEADLY DISEASE DURING KIDNEY MONTH

Kidney Patients Alert Public to a Silent Killer - Kidney Disease

Tampa, FL - As the nation recognizes National Kidney Month throughout March, the American Association of Kidney Patients (AAKP) is encouraging everyone to take steps to protect their kidneys. AAKP is the oldest and largest kidney patient non-profit organization in the United States. We exist to provide education to patients and their care partners, helping them achieve their best outcomes possible. The numbers are telling:

13 people die each day waiting for a life-saving kidney

Kidney care, including dialysis, costs the American taxpayer over $99 billion per year.

An estimated 26 million Americans suffer from chronic kidney disease (CKD), including more than 600,000 individuals who suffer from complete renal failure which includes those on dialysis or have a functioning kidney transplant.

Today, there are more than 100,000 people on the kidney transplant waiting list.

Kidney disease is often referred to as the silent killer because it often presents no symptoms in its earliest, most treatable phase.   Education, awareness, lifestyle choices and knowing what can cause your kidneys to fail can make a significant difference in preventing kidney disease or slowing its progression.

Paul T. Conway, president of the American Association of Kidney Patients stated, “Kidney disease is a brutal and devastating illness that is often detected too late, increasing the need for life-saving dialysis treatments and kidney transplantation. During National Kidney Month, we encourage Americans to talk to their doctors about their risk for the disease. We also give thanks to every American, especially living kidney donors and those who have signed up to be organ donors, for their generosity and compassion for those whose faith and courage helps them endure the pain and suffering of kidney disease.”

During National Kidney Month, AAKP is taking the opportunity to educate the public about its risks factors for kidney disease. Here’s a look ahead:

On March 8, AAKP is participating in the 3rd Annual Patient Advocacy Day in Washington, DC. AAKP with its partners, the National Kidney Foundation, Alport Syndrome Foundation, Polycyctis Kidney Disease Foundation, IGA Nephropathy Foundation of Americaand NephCure Kidney International to brief elected leaders and their staffs on the need to protect living organ donors and increase funding for kidney disease research.

March 10th is World Kidney Day. AAKP, the American Society of Pediatric Nephrology, the American Society of Nephrology, Polycystic Kidney Foundation,National Renal Administrators Association, Renal Physicians Association, in collaboration with the Congressional Kidney Caucus and Representative Jaime Herrara Beutler is hosting a Congressional Briefing on the impact kidney disease has on children. This event is open to the public. To attend, RSVP atCRDFellow@dc-crd.com.

On March 10th join AAKP for the AAKP HealthLine webinar, Mastering Social Media as a Patient Advocate with social media expert James Myers. Mr. Myers was the first recipient of the AAKP National Social Media Award. He will discuss how people with kidney disease, sharing their story, can increase awareness of the disease. Mr. Myers will share how to get started, how to tap into your networks and how to become your own best advocate. The webinar is 1:00pm – 2:00pm ET. Register online at .

March 18, AAKP will honor the 2016 Medal of Excellence Award Winners.
All 2016 award recipients will be recognized during AAKP's Medal of Excellence Award Dinner, held in conjunction with the Renal Physicians Associations Annual Meeting at the Sheraton Wild Horse Pass Resort & Spa (Chandler, AZ). The AAKP Medal of Excellence is the Association’s highest honor for healthcare professionals. The award recognizes visionaries whose insight and perseverance have led to dramatic advances that improve patient care. The 2016 award winners include:

Physician Category
•         Richard Gibney, MD of Waco, TX
•         Edward Jones, MD, MBA of Philadelphia, PA
Nursing Category
•         Katrina Russell, RN, CCN of Seattle, WA
•         Karen Walton-Brown, RN, BSN, CNN of Dallas, TX
Social Work Category
•         Wendy Funk Schrag, LMSW, ACSW of Newton, KS
Dietitian Category
•         Linda McCann, RN, CSR, LD of Eagle, ID
•         Rita Dimmitt-Solomon, RD, CSR, LDN of Nashville, TN

https://aakp.org/press-release/kidney-patients-shed-light-deadly-disease-kidney-month/

KIDNEY PATIENTS TRAIN TO FLEX SOCIAL MEDIA MUSCLE

KIDNEY PATIENTS TRAIN TO FLEX SOCIAL MEDIA MUSCLE

Over 200 Patients Prepped for Action in Past Six Months


Washington, DC - The American Association of Kidney Patients hosted a special Social Media Training Heathline Webinar in honor of World Kidney Day and National Kidney Month, featuring James Myers, a dialysis patient from Crown Point, Indiana. Mr. Myers is a nationally-known social media activist and was the inaugural individual winner of the AAKP Social Media and Advocacy Award in 2015 (click here to see his 2015 award acceptance speech).  The special Social Media Training Healthline Webinar was recorded and is available along with the full AAKP Healthline archives on the AAKP website www.aakp.org/media-files/aakp-healthline.html.

More than 30 patients were trained in the recent special Media Training Heathline Webinar, joining more than 170 other kidney patients who were similarly trained by AAKP last year at the AAKP National Patient Meeting in Nashville, Tennessee. For the past two years, AAKP has prioritized social media as a key part of its national strategy to elevate the patient voice to the front end of national public policy, legislative and healthcare discussions. AAKP has been highly aggressive at inserting the patient voice throughout the development and full lifecycle of medical devices, diagnostics and pharmaceuticals related to the battle against kidney disease.

Mr. Myers discussed how to use social media to effectively tell the patient story and experience and how best to educate and advocate for better care for kidney patients. He uses social media to engage elected leaders, healthcare professionals and the personal and professional networks of patients

"I've done everything from kidney walks, to knocking on doors to ask for contributions, to manning tables at events, but there is nothing quite like the reach of social media for honest raising of awareness for kidney issues.  It gives every kidney patient the ability to get involved and to make real changes in public policy, unlike any other method on earth” stated James Myers.  “If you want to change public policy and make yourself heard, social media offers an inexpensive and effective medium that is unsurpassed.  Normal kidney patients with no voice now have the means to make their concerns heard!"

Mr. Myers has also been actively involved with petition drives through multiple national social media platforms aimed at increasing national awareness of kidney disease, including Change.org

Paul T. Conway, President of AAKP and an architect of multiple national grassroots and social media campaigns said, “James Myers is an incredible asset to kidney patient community and we are pleased to count such a talented activist among our cadre. His self-less service on behalf of those in need is highly honorable and he is an expert at blending personal narratives with cutting edge technology to increase the impact of everyone who cares about the devastating impacts of kidney disease.”

The AAKP Social Media and Advocacy Award was launched in 2015 to recognize individuals and organizations successfully deploying social media to increase patient engagement and patient advocacy within public policy and healthcare policy.  The award is an initiative under the AAKP Center for Patient Engagement and Advocacy, a newly formed center dedicated to providing online advocacy tools, social media training, certification for patient advocates and links to federal agency patient engagement opportunities. The National Kidney Foundation won the first organizational award for its video entitled “Everyone Pees (https://www.youtube.com/watch?v=y165Gv_SBd4) which garnered over 1 million social media views.

Information, applications and nomination information for the 2016 AAKP Social Media and Advocacy Award can be found by visiting the AAKP website at www.aakp.org and click on Programs and Events.

AAKP engages in a number of multi-supported programs and activities that educate, advocate for and empower patients to understand their condition, take control of their illness, and make informed choices on the best course of treatment for them. AAKP firmly believes that an informed patient is a healthy patient. Research shows that an informed patient, provided with the tools and resources to: understand their condition, determine the best treatment option for them and be empowered to be the leader of their healthcare team, is an overall healthier patient – physically, emotionally and socially.

For more information about AAKP and its programs, visit www.aakp.orgor call 1-800-749-2257.

###

AAKP is a voluntary non-profit organization founded by kidney patients, which for more than 45 years, has been dedicated to improving the quality of life of kidney patients through education, advocacy and the fostering of patient communities. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances, and assume more normal, productive lives in their communities.



Membership in AAKP is Free



https://aakp.org/press-release/kidney-patients-train-flex-social-media-muscle/

BOARD OF DIRECTORS

BOARD OF DIRECTORS

JAMES W. MYERS III - CHAIR OF STRATEGIC COMMUNICATIONS COMMITTEE, AAKP FIELD AMBASSADOR

Polycystic Kidney Disease (PKD) runs in Jim’s family. He has lost 5 family members to PKD, including his father. Because of my family’s history, he was diagnosed at the age of 25, and was able to put off dialysis until the age of 58. He was on dialysis for 4 years and received a kidney transplant on April 27th, 2016.



Jim is currently employed by the Crown Point Community School Corporation as a substitute teacher. He enjoys working with children, especially those with special needs. Jim is a very active kidney advocate with many organizations. His specialty is the ability to utilize social media to help fellow kidney patients and to raise awareness of the plights of the kidney patient. He is a very experienced advocate both at home and on Capitol Hill with his Members of Congress.

https://aakp.org/board-of-directors/

SOCIAL MEDIA AWARDS


American Association of Kidney Patients

The Independent Voice of Kidney Patients Since 1969™

SOCIAL MEDIA AWARDS

AAKP has a national award program designed to recognize the expanded power and impact social media, patient engagement and patient advocacy are having on public policy and health care delivery. Through these awards, AAKP plans to recognize and expand the number of key influencers working to inform all Americans about kidney disease, individuals and institutions advancing the health interests of kidney patients and patient leaders who mobilize fellow kidney patients to make an impact on future health outcomes. The awards are an initiative under the AAKP Center for Patient Engagement and Advocacy, a new center dedicated to providing online advocacy tools, social media training, certification for patient advocates and links to federal agency patient engagement opportunities.


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The 2015 Award Winners:

NATIONAL SOCIAL MEDIA EDUCATION & ADVOCACY AWARD

James Myers,(www.facebook.com/jamesmyers3) is an AAKP Member and polycystic kidney disease (PKD) patient who was the very first person to be chosen for any of the new AAKP awards. He was awarded the Social Media Education and Advocacy Award in the category of patient advocate. Mr. Myers has been a blogger for 10 years, sharing his story and using social media to digitally engage audiences by sharing insights and experiences he hopes will help foster a digital community which supports kidney patients, families and the healthcare professionals who care for them. He has been actively involved with petition drives through Change.org aimed at increasing national awareness of kidney disease. Although Mr. Meyers could not attend the AAKP National Patient Conference, his remarks can be found at https://vimeo.com/140550061.

https://aakp.org/social-media-awards/

Crown Point kidney recipient dedicated to helping others get transplants




Crown Point kidney recipient dedicated to helping others get transplants




Jim Myers, of Crown Point, runs several social media pages dedicated to connecting organ donors with recipients. He got his own kidney transplant in 2016. John J. Watkins, Times file photo▲

Chas Reilly

Dec 8, 2018

It was in 1983 when Jim Myers started experiencing chest pains.

It was just months after his father died from polycystic kidney disease, or PKD, an inherited chronic condition in which liquid-filled cysts form on the kidneys.

Myers, 25 at the time, went to the hospital, where an X-ray showed large cysts on his kidneys.

“That's how I was diagnosed” with PKD, said the Crown Point man.

The news came as a blow to Myers, who has lost five family members to the disease. But he found support, including assistance from a family doctor who referred him to Indiana University Health for treatment.

That's where Myers met Dr. Richard Hellman, who put Myers on a renal diet and high blood pressure medication. Medical personnel at IU Health monitored him by taking blood and urine samples every six months.

“They kept a close eye on me,” Myers said.

Through early treatments, physicians can help forestall the growth of cysts on kidneys and protect patients from other complications, including cardiac conditions that could arise from high blood pressure.

Because PKD is an inherited disease, Hellman recommends people get examined if they have a history of it in their family.

Tests can includes ultrasounds to analyze kidneys.

Such early diagnosis and comprehensive treatment helped Myers put off dialysis for more than 20 years.

“I was very fortunate,” he said.

Dialysis, and his wait for a new kidney, started in 2012.

He said he had two or three “false alarm” calls in which he was told a transplant would take place, but the situations didn't turn out — and his condition worsened.

Though he was told in April 2016 that it might be another year or two for a transplant, he was called that month because a kidney was available.

Myers headed to Indianapolis and came home with a new kidney.

His follow-up monitoring included weekly blood draws. That has increased to every three months, Myers said, adding that his numbers “have been great” since the transplant. “I've been very, very fortunate,” said Myers, who is now 64.

Though Hellman is no longer treating Myers, the two stay in contact. “I’m glad he’s doing well,” Hellman said, after seeing Myers recently.

For his part, Myers works to spread that good fortune as an advocate for others who need a kidney.

About six months after starting dialysis, Myers learned of potential funding cuts that would have reduced services to dialysis centers, putting staffing from nurses, dialysis technicians, dietitians and social workers at risk.

“They are all very important to people taking dialysis,” Myers said.

Many of the people taking dialysis with Myers at the time didn't have such an early diagnosis, so some “were not in good shape,” he said. Many came in to the center in wheelchairs, walkers and canes. He stepped up to fight for them.

His early efforts included a petition on change.org. Myers said he also contacted newspapers, reached out to kidney organizations and met with lawmakers to oppose the cuts. His efforts succeeded.

That was just the beginning.

There are about 100,000 people awaiting kidney transplants in the United States, but about 20,000 transplants took place last year, Myers said.

So Myers helps those searching for kidneys and advocates for a variety of causes, including organ donation, early detection and treatment legislation and live donor legislation.

Myers is active on social media, running 60 Facebook pages and Twitter and Instagram accounts.

He serves on the board of the American Association of Kidney Patients.

Myers said he is proud of the work he has been able to accomplish, including helping four recipients locate kidneys, and he has no plans of slowing down.

“This is what I want to do for the rest of my life,” he said.

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Living with dialysis, fighting kidney disease



Living with dialysis, fighting kidney disease




Paul Thurston, of Gary, watches television as he gets dialysis at Davita Dialysis Clinic in Merrillville. Jonathan Miano, The Times▲




Nephrology specialists Dr. Sanjeev Rastogi, right, and Dr. Raied Abdullah. Jonathan Miano, The Times▲

Carmen McCollum carmen.mccollum@nwi.com, (219) 662-5337

Feb 3, 2015

The goal of dialysis is to make sure patients get the proper amount to clean the blood.

Dialysis replaces normal kidney function. When a patient is connected to the machine, the blood is cleaned, filtered and returned to the body while excess fluids are removed.

Some dialysis patients produce little or no urine, and that can lead to bloating, which is why removing fluid is so important, doctors said.

Justin Forbis, spokesman for Davita Kidney Care, which, with Fresenius Medical Care North America, is one of the two major dialysis companies in the United States, said, "Every patient's treatment time varies based on the time their physician prescribes for them."

Forbis said 1 in 10 adults in the U.S. has some stage of kidney disease, yet many don't recognize general symptoms such as being tired and fatigued.

"Those at greatest risk include people with diabetes and hypertension," Forbis said.

"In addition, minority populations are at a disproportionately higher rate of developing kidney disease, with African-Americans 3.5 times more likely, and Hispanics 1.5 times more likely than whites."

Nephrologists Sanjeev Rastogi and Raied Abdullah said the primary goal when they begin seeing patients with renal failure is to reverse or slow the process.

Merrillville's Abdullah said most patients go to dialysis three times a week for three to four hours at a time.

"The rest of that time, the body continues to make toxins," he said. "We take advantage of the time they are there to get the best cleaning for adequacy."

"To remove 48 hours worth of salt and fluid intake over a three- or four-hour period is challenging for the body," said Munster's Rastogi. "That's one of the main sources of discomfort on dialysis -- the cramping, headaches, passing out, light-headedness, feeling bad, fatigue and lethargy."

Because of these "metabolic corrections," Rastogi said patients are urged to follow the proper diet.

More older patients on dialysis

Abdullah said in the last 10 years, he has seen more elderly patients on dialysis.

"I have seen more patients 90 years-plus who were relatively healthy, but needed dialysis," he said. "It's surprising that a majority of them want to do dialysis."

He said he has a dozen patients older than 90, and one older than 100. She began, but then quit, dialysis.

"She tried dialysis for a month and decided she didn't want to do it. ... It's nine months later and she's still around. She's sick, but she made a conscious decision against it. It's her decision. We leave that up to the patient and their family."

Rastogi said it's quality-of-life issue.

"When you see that your quality of life is going to be severely impacted, there may be some people who are comfortable with not initiating dialysis or withdrawing from it," he said. "For most people, there is a decline in the quality of life but they are prepared to put up with it to prolong life."

Rastogi said most physicians salute all dialysis patients, noting what they deal with can be astounding.

"If we were to put ourselves in their shoes and think about how we would react in their place, I think we would be just like any other patient," he said.

"We would sometimes fail with our diets. We would sometimes fail with our fluid intake. Sometimes we would not be compliant with our medication, but those are the very things you have to do to succeed."

He said what pushes patients is often different.

"The drive to succeed and do everything you can and get the most out of life is different in everyone," Rastogi said.

"Sometimes, you can be on dialysis and live a lifestyle that's not too different from where you were before."

A spokesman at Fresnius said as of late 2014, Fresenius had 9,955 patients in its Illinois facilities and 5,132 patients in its Indiana facilities. The average age of a dialysis patient is 62.5.

There are also several hospital-based clinics. A spokeswoman at Porter Regional Hospital in Liberty Township said the hospital provides dialysis for inpatients on an as-needed basis. She said they do the dialysis at the patient’s bedside.

Kidney transplant next step for some

Mark Reid, of Hebron, and Jim Myers, of Hammond, are among many local kidney patients who work with the National Kidney Foundation of Indiana.

Reid, 53, who now works in the credit recovery program at Griffith Public Schools and coaches there, received a kidney transplant in January 2013. He retired as a paramedic after 30 years before he got into education. The mother of one of his former football players at Merrillville High School donated a kidney to him. Patty Cowser said in March 2013 she was so grateful to Reid for being not only a great coach but also a great role model to her son, Joey, she decided to donate one of her kidneys to him.

Myers, 60, is on the list and looking forward to a transplant. His kidney problems were caused by polycystic kidney disease, an inherited disease he was diagnosed with at age 25.

Dr. John Friedewald, a transplant nephrologist and director of clinical research at Northwestern Medicine’s Comprehensive Transplant Center, said the Northwestern center is one of the largest providers of organ transplantation in the country.

“We transplant more than 350 organs a year and have six satellite transplant clinics to help patients outside the immediate Chicago area, including one in Portage that supports both kidney and liver transplantation,” he said.

Doctors there have researched ways to induce tolerance and eliminate anti-rejection medication using engineered stem cells in transplant, and artificially increasing a patient’s number of Regulatory T-cells, also a factor in transplantation.

Other doctors there are working on clinical trials using islet cell transplantation to treat diabetes and researching methods of growing new organs using rodent models.

Dr. Tim Taber, director of transplant nephrology at IU Health in Indianapolis, oversees another leading transplant center in the country. IU Health does about 500 organ transplants each year, and more than 200 are kidney transplants.

Taber said there are many things doctors look at when a person applies to be on the kidney transplant list.

"We want to make sure the person is healthy enough for a transplant, because the biggest issue is an increased risk of cardiovascular disease," Taber said. "We do stress testing and more aggressive tests if needed. We look at the blood vessels. We do a CAT scan and look at the cardiovascular system. As long as that is OK, we can move forward ... as long as the patient doesn't have anything like cancer and heart disease, no counter-indications to receiving a kidney transplant."

Taber said those who receive kidney transplants will be on medication for the remainder of their life, and need to understand the importance of taking that medication regularly.

"The most common cause of kidney failure in adults who have had a transplant is old age. Most of the transplanted kidneys last until the patient dies," Taber said.

"The second cause of death is that the patient doesn't follow up and loses the kidney because of non-compliance, so we need to make sure that's not going to be an issue. A kidney is a gift of life."

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