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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Early Detection and Treatment Saved My Life

Advocacy in Action

Early Detection and Treatment Saved My Life


 nkf _advocacy

1 year ago

By Jim Myers, Transplant Recipient and Kidney Advocacy Committee advocate

My name is James Myers and I’m a polycystic kidney disease (PKD) patient.  PKD is an inherited form of chronic kidney disease where liquid filled cysts form on one’s kidneys.  Most often it leads to high blood pressure, abdominal pain, and then kidney failure.




I was diagnosed at the age of 25, almost 40 years ago.  PKD runs in my family.  I’ve lost five members of my family to PKD, including my Dad.  When he passed away in 1983, I was tested.  On a simple x-ray, they were able to detect the large cysts on both of my kidneys.  This came as a blow to me, then a young practicing attorney. I was referred to Indiana University Health in Indianapolis.  They put me on high blood pressure medication, on a renal diet, and took blood and urine from me every six months.

Because I was tested and treated early in my life, I was able to postpone having to be on dialysis for 23 years, until the age of 58.  My dialysis was also easier on me than many of my clinic-mates and I was transplanted in four years – shorter than the average time in Indiana.

The fact that I was diagnosed and treated early on in my life has made a huge difference! The fact that my family doctor knew to make a quick referral to a nephrologist made a huge difference.  Their team approach to my case saved my life.  This is what H.R. 3867 is all about. This legislation would help doctors detect kidney disease earlier, when something can be done to slow the progression of the disease and improve the lives of patients.

My case shows that the early detection and treatment of kidney disease can prolong and improve a kidney patient’s life.  I’m living proof of that.  Please support the early detection and treatment legislation proposed by the National Kidney Foundation by sending your legislators a letter asking that they become a co-sponsor. By getting Congress to pass this law, we can save many more lives!


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Voices of PKD: Jim Myers, kidney advocate

ADVOCACY, VOICES OF PKD

Voices of PKD: Jim Myers, kidney advocate




Jim Myers

My name is Jim Myers. I have been fighting PKD/kidney disease for nearly 40 years. I currently live in Hammond, Ind. My mother and father ran a couple of grocery stores in my hometown, Cedar Lake, Ind. My dad was afflicted with polycystic kidney disease. On his side of the family, four other people died from PKD. I’ve lost five members of my family to PKD.

I was diagnosed with PKD when I was 25 years old. I went into my local hospital with what I thought were chest pains. From a simple x-ray, my family doctor was able to diagnose that I had multiple, visible cysts on my kidneys. He immediately referred me to nephrologists at Indiana University in Indianapolis for care and treatment. Under the guidance of Dr. Hellman, I learned that PKD was hereditary and had no cure, but the growth of the cysts could be slowed and controlled by high blood pressuremedication and a renal diet. As a practicing lawyer and later a college professor, this frightened me at the time, so I tried very hard to follow the protocol and make all my follow up visits. I was able to stay off dialysis until the age of 58. Then I was on dialysis for four years before receiving a transplant in 2016. I nicknamed my kidney Woody, after my dad. Woodrow is a family name, and it has been every Jim’s middle name since my grandfather and continues today through my son.




Jim on the day of his transplant, with his son Jim and daughter-in-law Monica

Like all PKD, patients, I have had my ups and downs. I had days where I passed kidney stones uncontrollably, I have had anemia, cysts burst and back pain so bad I could not move. Until 2018, I had been hospitalized at a minimum twice a year with PKD-related complications. I was no longer able to continue in my profession. I lost my marriage and my home. Initially, I was very angry, bordering on rage. I watched my father die, and I was certain that this was my fate.

While I was on dialysis, I noticed that although I drove myself to and from treatments, most of my other clinic mates came to the center by ambulance and were moved to their chairs by gurney, wheelchairs, walkers or canes. At almost the same time, Central Management Services for Medicare began to send out notices of cuts to funds for dialysis centers. Cuts could mean some devastating things for myself and my clinic friends: loss of nurses, technicians, social workers and a close place to dialyze. I thought someone should do something. These people were too sick to fight back. I was one of the healthier guys, and with my background as trial lawyer, I slowly came to the conclusion that at least in our clinic, it would have to be me. This is how my kidney advocacy began.




Jim speaking with Todd Young, U.S. Senator of Indiana, in Washington, D.C.

I started a petition on change.org. I became very active on social media. I wrote over 100 letters to the editor on the subject and I joined as many major local and national kidney advocacy groups as I could, including the PKD Foundation. I wrote articles and blogs. I contacted my local and national politicians. I spoke to any group that would have me. I worked with other organizations and people to learn how to fight against political challenges leveled against the kidney community, which I continue to do to this very day. I have been very fortunate to have won awards for my advocacy.

I continue to be very active on social media. I post kidney-related matters almost every day on Facebook, Twitter, Instagram and Tumblr. I reach approximately 100,000 people every month. I run 60 Kidney Pages and 50 Kidney Group pages, as well as nine electronic newspapers and 10+ blog sites. I have lectured on the subject of using social media to advocate for our fellow kidney patients to many large groups and kidney organizations.




Jim speaking at the 2018 AAKP Annual Convention in St. Petersburg about using Facebook to advocate for kidney disease

The advice that I would give to other PKD advocates is to play to your strengths. Use what you do best to raise awareness for PKD/kidney disease. If you speak well, write well, are musically inclined, research well, run a kidney related business well or any other talent you do well, that is your best avenue to produce great results for your advocacy. Use your gifts to help others. I’m a full time kidney advocate now. It is a decision that I do not regret. I highly recommend it. Questions? Don’t hesitate to contact me. My friends call me Uncle Jim.

https://pkdcure.org/blog/voices-pkd-jim-myers-kidney-advocate/

Q&A with CDC Ambassador James Myers

Q&A with CDC Ambassador James Myers

9.27.18




Nearly 40 years ago James Myers was diagnosed with polycystic kidney disease (PKD), which is an inherited form of kidney disease. Because Myers was tested early, he was able to postpone dialysis for 23 years and received a kidney transplant only four years after that.

An Indiana native and attorney, Myers has spent his life engaging in advocacy work on behalf of kidney patients and others living with chronic diseases. Read more about Myers’ passion for advocacy in our interview.

Q: Why did you first become involved in advocacy work?

A: I was in my first year of dialysis in 2012 when the Centers for Medicare and Medicaid Services had threatened to cut services to dialysis centers. This meant that we could lose support staff, nurses, dialysis techs, social workers and dieticians. The people I took dialysis with were very ill, often coming to the center by ambulance, on a gurney or crutches, in walkers and wheelchairs. For all practical purposes they were helpless.

I was an old trial lawyer, a plaintiff’s lawyer, and I did not look over injured people – I helped them. At that moment, I decided I was the only one in that room that could really help them and I accepted my responsibility. I put a petition up on Change.org, l wrote to newspapers, I did interviews, I wrote articles, I joined many kidney organizations and I became active on social media. I learned that I am a kidney advocate and I love fighting for others when they can’t.

Q: When did you first begin experiencing chronic disease symptoms and how did you feel after receiving your initial diagnosis?

A: I’ve lost five members of my family to PKD, including my father. I began experiencing issues after he passed in 1983. I was diagnosed at the age of 25 by a simple X-ray, and at the time, I was a practicing attorney with a wife and a child. Because of my experience with my dad, this news came as a horrible blow to me. My dad died after having battled congestive heart failure, uremic poisoning and dementia, which were all secondary to PKD. I felt that I would die soon.

Q: What inspires you?

A: I’m inspired by my fellow advocates, who lift my spirits every single day. I’m inspired by my fellow kidney patients who fight and never give up. Joy comes to me every time someone receives a transplant. My friends on social media inspire me with their continued efforts to raise awareness. The organizations and their members that I belong to bring me renewed vigor and positive reinforcement. I am learning so much from my fellow advocates within the Chronic Disease Coalition – their perseverance is an inspiration to me.

Q: What is one piece of advice you would offer to others who are battling a chronic disease?

A: Never ever give up, and advocate for others. Next to raising my son, this is the most fulfilling and meaningful thing I’ve ever done. If you are able, help your fellow patients. I live by this motto I have seen on a Facebook meme: “I’m a Kidney Patient the rest of my life, but I still have brain and I still have my voice. Therefore, it is my DUTY to advocate for those who cannot advocate for themselves the rest of my life.”

Q: What is the importance of support groups, both in-person and online? How can newly diagnosed patients find a support group near them?

A: It is very, very important! When I was first diagnosed, I felt very alone, and I think other people feel that way as well. The support groups made me recognize that there were others like me who had battled the disease longer. This gave me hope and others as well. Additionally, support groups can teach you how to more effectively manage your disease and what you can do to make life better. If you need advice or a resource for information, members in support groups can help.

Finding them is easy – Google it, check on social media or ask an experienced friend for help. You will be surprised just how many people and sources can help and how many groups are available to you by simply making a phone call or pushing a button. Groups like this may be in your neighborhood, or as close as your smartphone.

https://chronicdiseasecoalition.org/qa-with-cdc-ambassador-james-myers/3