MY MOTIVATION FOR THE AAKP PEDIATRIC PALS NEWSLETTER
By Jim Myers, AAKP Ambassador and BOD member
I have been asked to write about my motivation for the AAKP Pediatric Kidney Pals Newsletter. It’s a good question. I was not a pediatric patient, diagnosed at the age of 30, however I do love children and have an affinity with them. But that’s not the answer either. I met someone when I first went on dialysis in 2012. She changed my life forever. This is her story. A Kidney Pioneer and A Heroine My first day of dialysis was August 3rd, 2012. I remember the date because that is my birthday. I was none too pleased to be in-center. I had gotten ill at work and home several times. I passed out at home and struggled to reach my phone to call for help. I live alone. When I was finally able to call for help, I was taken to the hospital. Two surgeries and a tsunami of information later, I was in no mood to have a catheter in my neck and start dialysis. Anger doesn’t describe the feeling; I felt rage. I felt I would die soon like my Dad did (he too had been diagnosed with kidney disease). After a few weeks I made a new friend - short, vibrant grey-haired lady, with glasses, a moon face and a brilliant smile. I think she reached out to me, because I was such a miserable patient. She had been around. She had experience. She was kind and sweet, motherly to me. Little did I realize she was a piece of history. I didn’t know this at first. I didn’t know she was a hero. I didn’t know that she was a pioneer. Maureen O’Brien was a piece of history. A mentor to a crabby old man. Rarely do you run into a story of a person who was first; a person who was among the first more than once; a person whose kidney story spans decades and not just years, from childhood through adulthood and through middle age. It is even more rare to find that this same person has stared death in the face, and despite incredible odds, walked away from it. Maureen O’Brien is a dialysis pioneer in the State of Indiana. She is a transplant pioneer in my home state. She has had multiple transplants over the years. She has contracted what for most would have been fatal. Her story holds valuable lessons for all of us that assume we will be given dialysis, assume we will be put on a transplant list, listed at a transplant center, and given a fair shot at a transplant. Without Maureen and people like her, our experiences at dialysis and in transplantation would not be as simple or routine. Every one of us owes her. She is the one who taught me what it’s like to be a dialysis patient as a child. She is the one who taught me what it means to face multiple surgeries in your life. Her Kidney Story Starts at the Age of 11 Maureen’s story began when she was just 11 years old. Up to this point, she had a normal childhood, going to school at St. Mary’s in Crown Point, Indiana, (a catholic school preparing you for high school), being a small pixie of a girl with pigtails, wearing the school uniform, acting as a cheerleader for her school, having friends and studying like children do. Before 1968, she had led a normal, idyllic childhood in sleepy Crown Point. After ’68 it was anything but. She caught what appeared to her parents to be the flu. She had all of the normal symptoms, nausea, lethargic, and sleepy. She had some that did not fit the pattern: her skin color was off, and her urine was discolored. She seemed unable to shake the virus. When she failed to respond to medications, she was admitted to Gary Methodist Hospital and almost immediately transferred to Riley’s Children Hospital in Indianapolis, Indiana. The news was jarring. Maureen’s kidneys had failed. She would die without dialysis. Now, dialysis is taken for granted in kidney failures. The only question seems to be do you want to do dialysis in a clinic or would you rather do it at home? Hemo or peritoneal dialysis? Most of us receive our first dialysis treatments in this hospital before we are discharged. It is routine; old hat now. You have a quick surgery to insert a catheter in your chest and that is your dialysis connection. All in all, from surgery to my first session, it took 24 hours.
LITTLE MAUREEN HAD TO QUALIFY FOR DIALYSIS
Not for little Maureen. She and her parents would have to go before Methodist’s medical board and argue that she was mature enough; that she had both the physical and mental ability to handle dialysis. They had to raise money and come up with $40,000 before she would be seriously considered. Just imagine how brave this little 11-year-old girl and her folks had to be. Knowing the alternatives, they would have to argue that this little girl could handle the 1968 version of dialysis. Dialysis was new at this time. If they accepted Maureen, she would be one of the first children in Indiana to be placed on dialysis. The machine was not even called a dialysis machine at the time, but a contraption called an “artificial kidney device.” It was complicated difficult to operate. It relied on a 3ft long by1 ½ ft wide cellophane kidney with cellophane layers as the substitute kidney. This cellophane kidney would easily rip and tear, and basically failed frequently. It was very touchy. She and her mother would be expected to operate this device. This is a far cry from the smooth running, computer operated machines that practically run error-free that I used three times a week. She and her mom were expected to operate this device every day. At home. Alone. I took dialysis at a Fresenius Medical Center. Except for showing up and weighing myself before and after my run, I was really expected to do nothing except sit there. I was closely supervised by trained nurses and dialysis techs who respond to alarms from the machine indicating that the smallest thing is wrong. If my blood pressure is a little low, they’d come, answer the alarm and check it out. They knew what to do. I was not alone with some machine I know next to nothing about. Back then, Maureen and her mom were expected to run the artificial kidney machine, at home, alone. No nurses. No trained medical personnel. No center. My typical run on dialysis was four hours long. I was constantly checked on, given meds, my blood pressure is automatically taken. Except for the time, there really is no issue with pain and most of my runs were silky smooth. This young 11-year- girl and her mother faced daily runs of 9-12 hours. And they had to be trained to use it. This was not the go-to class for a 4-hour period and graduate with honors type of deal. If accepted into the program, Maureen and her mom would have to take an apartment in Indy and stay there for three months. Methodist had expressed to the family that they had their doubts about little 11year-old Maureen. A “no” decision would have brought the little girl from Crown Point to the edge of life. Fortunately, the Board said “yes”.
LIFE FOR MAUREEN AFTER STARTING CHILDHOOD DIALYSIS
After 3 months of training, Maureen and her mother came home. The family set up a room in the basement designated as the dialysis room. They did not have a highly trained dialysis staff; they had a phone number. The incredible amount of time dialysis took meant Maureen could not go to school as often. She wasn’t a cheerleader any more. She did not have a real classroom experience. She missed her friends. Her life now revolved around dialysis. And dialysis only. For a 2-year period she was on dialysis at home. She missed a great deal of school in both her Junior High and High School years. Why did little Maureen’s kidneys fail? Even this is not answered completely. There are two theories. Either it was congenital, or she lost her kidney function due to strep throat. As there was no evidence of a genetic disease, the doctors concluded that it must have been the strep throat she had with her flu. This is still an issue today, where many people suffer kidney failure due to some type of infection.
CAN A JUNIOR HIGH STUDENT GET A KIDNEY TRANSPLANT
Maureen now faced a second hurdle where she was once again a pioneer. In 1972, at the age of 15, she was considered for a transplant. She was still in Junior High School at Taft Jr High. The same issues were present. Was she mature enough? Would she be able to handle the potential of rejection? The average life expectancy of a patient on dialysis now in the 21st Century is between 3-5 years. Some people tolerate it much longer, but that is the average. Maureen had spent her 3-5. To protect her life, her mother was willing to donate a kidney. Would the now young junior high school student be given a chance? What we commonly call now a second chance at life? Once again, presentations had to be made. Once again, she would be blazing a trial. Once again, the young woman from Crown Point would be at or near the front of the line.
The verdicr was in her favor. She would now become one of the youngest kidney transplants in Indiana. One of the very first for her age. The first transplant took place in 1972 at Methodist Hospital in Indianapolis. Maureen was 15 at the time; just a freshman in the 9th grade. She was now not only one of the youngest to start dialysis in Indiana, but also one of the youngest to be transplanted. One complication that occurred with the transplant, was the after-transplant meds. Anti-rejection medication was not in use then. Steroids were given to prevent rejection. This lasted for almost 30 years. They had a side effect of causing Maureen to balloon up in both weight & appearance from her normal small frame of 4’ 9” & 80 lbs. Children & some adults teased the ex-cheerleader. This left some emotional scars that would last the rest of her life. I heard it in her voice when she tells you it was “hurtful.” On the plus-side, the change after the first transplant was remarkable. She had much more energy and freedom.
Maureen When She Graduates From High School, Already Stating She Wishes To Be A Nurse
MAUREEN THE HEALER
In 1975, she went back to school at Gateway Community College in Phoenix. She completed work on her LPN at St. Anthony’s Ivy Tech in Michigan City in 1977. She also worked in a Phoenix Hospital until 1989. Unfortunately, her transplanted kidney was rejected by 1983, after 11 years. To gain some support, she moved back to Crown Point to be closer to her mother. Between 1983 and1986, she was again on dialysis. She was back on the transplant list in 1986, and she received a new kidney for her second transplant within six months at Good Samaritan Hospital in Phoenix. This kidney came from a cadaver, a 15-year-old boy who died from self-inflicted gunshot wounds. This second transplant was complicated by the fact that she was pregnant three months after the transplant. She came through the procedure without a hitch. In that same year, 1986, she gave birth to her first child, Matthew. She married and her second child, Lisa was born on Thanksgiving Day in 1989. She moved back to Arizona and worked at Scottsdale Health Care from 1990 to 1999. She was divorced in 1993. At this same time, she completed work on her Associate’s Degree and worked as a as a float nurse and as an RN in cardiac, critical care nursing.
A SECOND REJECTION
By 1998, her second kidney went through rejection. It was her 25th year as a nurse. She then sold her home in Mesa and moved back to Crown Point. She purchased a house there with her brother. This was particularly tough because she went back on dialysis with two little kids.
HER THIRD TRANSPLANT
Subsequently, her sister was tested and found to be a perfect match. In 2006, a third transplant was performed at Northwestern Hospital in Chicago. Unfortunately, she rejected her third kidney within four months. They placed her on chemotherapy due to the rejection. They were unable to save the kidney and it was a very fine line to save her life. While she was hospitalized in Northwestern for five days, she slipped into a coma. At that time, they felt she would pass and sent her to hospice. Maureen miraculously, woke up from the coma hearing her daughter talking and she laughed at her daughter’s joke. She went home, was very independent and happy. Every day before I took dialysis, we’d speak. I often visited her at her home. She taught me more than I can express. I took a vow when I learned she had passed. Pediatric Kidney Patients need advocates, too.
LEGEND
She was an invaluable friend and reference. I lost my friend after I was transplanted in 2016. She will always be my hero. Kidney Advocate and pioneer, Maureen O’Brien is the reason I am passionate about representing children with kidney disease and my motivation to work with the AAKP on the Pediatric Kidney Pals Newsletter. To the oldest, largest and most patient-oriented kidney group in America, I thank you!
https://aakp.org/blog/motivation-aakp-pediatric-pals-newsletter-posted-june-25-2018/
Monday, February 25, 2019
BACK TO SCHOOL: PROBLEMS FACED BY PEDIATRIC KIDNEY PATIENTS AND THEIR CAREGIVERS (POSTED SEPT. 4, 2018)
BACK TO SCHOOL: PROBLEMS FACED BY PEDIATRIC KIDNEY PATIENTS AND THEIR CAREGIVERS (POSTED SEPT. 4, 2018)
By Jim Myers, AAKP BOD and Ambassador
Introduction
Have you seen children’s faces when they go back to school? They are all happy and smiling, with their new clothes, shoes, backpacks and school supplies. It’s a chance to see all their friends again. But for some students, it may not be a joyous occasion. For some pediatric kidney patients, it may be an endless conflict between other students and the administrators/teachers of their school. Children with kidney disease frequently miss school, for dialysis, doctor appointments and illness. The main issue becomes, has the child attended enough days during to school year to continue to the next grade? Is the pediatric kidney patient under constant attack due to his/her incurable illness?
According to National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), these children do face complex and difficult issues at school:
“Serious and long-lasting conditions like kidney failure affect many parts of a child's life. Having kidney failure influences a child's self-image and relationships with peers and family. It can lead to behavior problems and make achieving goals more difficult. Being aware of these problems can help you recognize that your child may need some additional guidance or understanding at times.[i]”
Pediatric Kidney Patients May Have Trouble Learning
Because of the nature of kidney disease and the unique issues it causes, children with kidney disease may have issues at school. These disease related issues may cause them medical issues that interfere with learning. The kidneys’ job is to create a chemical balance in the body, riding it of waste products, while maintaining a balance leading to growth and good overall health. In pediatric kidney patients, there is a failure to balance the chemistry properly, resulting in issues that could impair learning. In many children with kidney disease, this results in a slowing of growth and a diminished size in appearance. The buildup of toxins in the body can result in poor brain and nerve function. Concentration and the ability to learn, comprehend and state back what you have learned are inevitably affected. Language and motor skills are also affected. If kidney disease occurs early in an infant child, more severe problems can occur. Many of these children are on a feeding tube to try to make up for the loss of nutrients. Only transplantation and/or dialysis can improve this situation. The very treatment that enables the child with kidney disease to be successful in school, may be the greatest source of friction between school and child’s parent/caregiver.
Low Self-Esteem and Socialization
Because of a diminished size, a feeding tube, brain fog and frequent incontinence, it is a small wonder that the child afflicted with kidney disease can suffer from low-self-esteem. As a result, they frequently have difficulty with their peers. These children feel depressed, powerless and excluded, simply because of the effects of kidney disease. It is no surprise that not only children, but many adults, teachers and administrators do not understand the plight of the pediatric kidney patient.
Poor Attendance at School
The challenge then, is to try to help children with kidney disease feel as normal as the “other kids.” The first step is to inform teachers and administrators of your child’s illness and limitations.
Recently, I attended a seminar in Kansas City for PKD patients. A parent of a child with kidney disease spoke about meeting with a teacher to discuss the frequency of bathroom breaks. The teacher had a hard and fast rule that a student could only go to the bathroom once every four hours. The mom had to explain to the teacher that with a diminished size, comes a smaller bladder, and an exception had to be made for her special needs child. An exception was indeed granted.
The real issue here is how do we deal with children that do in-center hemodialysis or have medical appointments or frequent medical issues? After every effort has been made to schedule kidney activities around the school’s schedule, how is the pediatric kidney patient protected?
Under The Individuals with Disabilities Education Act (IDEA, Public Law 94-142):
“… every child is entitled to an appropriate education and directs school districts to provide special services to ensure that children with disabilities are able to participate in regular classrooms to the fullest possible extent. Your child may need tutoring or vocational rehabilitation. Work with school counselors to find the best arrangement for letting your child work at a comfortable pace while also spending time with other children.[ii]”
Even in School Pediatric Kidney Patients Must Take Their Meds
Another problem that children with kidney disease who attend school face is dealing with their regimen of taking their medications. This is a particular problem with adolescents. According to the NIH, only half of adolescent kidney patients take their medication as prescribed, including kidney transplant patients[iii]. What is the solution?
“Health professionals use the terms "noncompliance" or "nonadherence" to describe a patient's failure or refusal to take prescribed medicines or follow a doctor's directions. Teenagers with transplanted organs may be noncompliant because the immunosuppressive drugs they must take change their appearance in unflattering ways. A child psychologist may be able to suggest techniques that reinforce desired behaviors. But communicating clearly about the reasons for treatment and the importance of following the regimen is an important part of helping all patients, including children. Children who understand that their decisions can affect their health are more likely to take responsibility for their actions.[iv]”
Pediatric Kidney Patients are not Likely Allowed to Participate in Sports and Many Extra-Curricular Activities
Another problem leading to isolation is that many pediatric kidney patients are not allowed to participate in sports or many extra-curricular activities. In many cases, the pediatric nephrologist may restrict their patient from sports and require long periods of rest. This also results in further isolation from the child’s peers at school. Fortunately, exercise and some light exertion can be good for the overall health of the pediatric kidney patient. Follow the advice of your physician on this issue.
Issues Making Friends
Pediatric kidney patients frequently have difficulty making friends. They have trouble fitting in because of their height, cognitive difficulties, incontinence, absences and learning disabilities. Kidney transplant patients may suffer some physical side-effects due to anti-rejection medication, like prednisone. This makes relating to peers very difficult. A child psychologist or the social worker at your dialysis center may be helpful to suggest methods to help integrate the child into school society. Active participation in the classroom, extra-curricular activities and special needs summer camps may be helpful with socialization at school.
People Who Can Help, May Be Costly
There are people who can help with these issues. These people would include:
Social Worker from Your Dialysis Center
Psychologist
Psychiatrist
Counselor
Accountant/Bookkeeper to help manage medical bills
Non-Medical Emergency Transportation
While many of these services are free, many come with potentially high costs that may be difficult to pay for households already over-burdened by the cost, expense, time and mental pressure of caring for a child with a chronic disease.
Conclusion
The life of a pediatric kidney patient at school may be very difficult for the patient and his/her parents or caregiver. School is supposed to prepare students for a work life in adulthood. Just imagine the difficulties an adult would have in the workplace after school is over if they are of diminished size, with cognitive difficulties and medical, hospital and dialysis appointments that require a reasonable accommodation under the Americans With Disabilities Act from day one of employment. Success at school could mean success at the workplace. Every effort should be made to insure these children get their best shot at succeeding in school. Pediatric kidney patients deserve nothing less than our very best efforts to advocate on their behalf.
The American Association of Kidney Patients has recently started an initiative to bring to light the plight of the child kidney patient. Please join us! Visit https://aakp.org/pediatric-kidney-pals/ to sign-up for the newsletter and stay up-to-date on AAKP’s initiatives for pediatric kidney patients and their families.
References:
[i] School & Family Problems of Children with Kidney Failure, www.kidneyurology.org/Library/Pediatric/School_Family_Problems_Children_With_Kidney_Failure.php NIH Publication No. 06–5165, June 2006.
[ii] Id.
[iii] NBC News, Doctor’s text nagging prods teens to take meds, http://www.nbcnews.com/id/24581894/ns/health-health_care/t/doctors-text-nagging-prods-teens-take-meds(2008)
[iv] School & Family Problems of Children with Kidney Failure, www.kidneyurology.org/Library/Pediatric/School_Family_Problems_Children_With_Kidney_Failure.php NIH Publication No. 06–5165, June 2006.
https://aakp.org/blog/back-to-school/
By Jim Myers, AAKP BOD and Ambassador
Introduction
Have you seen children’s faces when they go back to school? They are all happy and smiling, with their new clothes, shoes, backpacks and school supplies. It’s a chance to see all their friends again. But for some students, it may not be a joyous occasion. For some pediatric kidney patients, it may be an endless conflict between other students and the administrators/teachers of their school. Children with kidney disease frequently miss school, for dialysis, doctor appointments and illness. The main issue becomes, has the child attended enough days during to school year to continue to the next grade? Is the pediatric kidney patient under constant attack due to his/her incurable illness?
According to National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), these children do face complex and difficult issues at school:
“Serious and long-lasting conditions like kidney failure affect many parts of a child's life. Having kidney failure influences a child's self-image and relationships with peers and family. It can lead to behavior problems and make achieving goals more difficult. Being aware of these problems can help you recognize that your child may need some additional guidance or understanding at times.[i]”
Pediatric Kidney Patients May Have Trouble Learning
Because of the nature of kidney disease and the unique issues it causes, children with kidney disease may have issues at school. These disease related issues may cause them medical issues that interfere with learning. The kidneys’ job is to create a chemical balance in the body, riding it of waste products, while maintaining a balance leading to growth and good overall health. In pediatric kidney patients, there is a failure to balance the chemistry properly, resulting in issues that could impair learning. In many children with kidney disease, this results in a slowing of growth and a diminished size in appearance. The buildup of toxins in the body can result in poor brain and nerve function. Concentration and the ability to learn, comprehend and state back what you have learned are inevitably affected. Language and motor skills are also affected. If kidney disease occurs early in an infant child, more severe problems can occur. Many of these children are on a feeding tube to try to make up for the loss of nutrients. Only transplantation and/or dialysis can improve this situation. The very treatment that enables the child with kidney disease to be successful in school, may be the greatest source of friction between school and child’s parent/caregiver.
Low Self-Esteem and Socialization
Because of a diminished size, a feeding tube, brain fog and frequent incontinence, it is a small wonder that the child afflicted with kidney disease can suffer from low-self-esteem. As a result, they frequently have difficulty with their peers. These children feel depressed, powerless and excluded, simply because of the effects of kidney disease. It is no surprise that not only children, but many adults, teachers and administrators do not understand the plight of the pediatric kidney patient.
Poor Attendance at School
The challenge then, is to try to help children with kidney disease feel as normal as the “other kids.” The first step is to inform teachers and administrators of your child’s illness and limitations.
Recently, I attended a seminar in Kansas City for PKD patients. A parent of a child with kidney disease spoke about meeting with a teacher to discuss the frequency of bathroom breaks. The teacher had a hard and fast rule that a student could only go to the bathroom once every four hours. The mom had to explain to the teacher that with a diminished size, comes a smaller bladder, and an exception had to be made for her special needs child. An exception was indeed granted.
The real issue here is how do we deal with children that do in-center hemodialysis or have medical appointments or frequent medical issues? After every effort has been made to schedule kidney activities around the school’s schedule, how is the pediatric kidney patient protected?
Under The Individuals with Disabilities Education Act (IDEA, Public Law 94-142):
“… every child is entitled to an appropriate education and directs school districts to provide special services to ensure that children with disabilities are able to participate in regular classrooms to the fullest possible extent. Your child may need tutoring or vocational rehabilitation. Work with school counselors to find the best arrangement for letting your child work at a comfortable pace while also spending time with other children.[ii]”
Even in School Pediatric Kidney Patients Must Take Their Meds
Another problem that children with kidney disease who attend school face is dealing with their regimen of taking their medications. This is a particular problem with adolescents. According to the NIH, only half of adolescent kidney patients take their medication as prescribed, including kidney transplant patients[iii]. What is the solution?
“Health professionals use the terms "noncompliance" or "nonadherence" to describe a patient's failure or refusal to take prescribed medicines or follow a doctor's directions. Teenagers with transplanted organs may be noncompliant because the immunosuppressive drugs they must take change their appearance in unflattering ways. A child psychologist may be able to suggest techniques that reinforce desired behaviors. But communicating clearly about the reasons for treatment and the importance of following the regimen is an important part of helping all patients, including children. Children who understand that their decisions can affect their health are more likely to take responsibility for their actions.[iv]”
Pediatric Kidney Patients are not Likely Allowed to Participate in Sports and Many Extra-Curricular Activities
Another problem leading to isolation is that many pediatric kidney patients are not allowed to participate in sports or many extra-curricular activities. In many cases, the pediatric nephrologist may restrict their patient from sports and require long periods of rest. This also results in further isolation from the child’s peers at school. Fortunately, exercise and some light exertion can be good for the overall health of the pediatric kidney patient. Follow the advice of your physician on this issue.
Issues Making Friends
Pediatric kidney patients frequently have difficulty making friends. They have trouble fitting in because of their height, cognitive difficulties, incontinence, absences and learning disabilities. Kidney transplant patients may suffer some physical side-effects due to anti-rejection medication, like prednisone. This makes relating to peers very difficult. A child psychologist or the social worker at your dialysis center may be helpful to suggest methods to help integrate the child into school society. Active participation in the classroom, extra-curricular activities and special needs summer camps may be helpful with socialization at school.
People Who Can Help, May Be Costly
There are people who can help with these issues. These people would include:
Social Worker from Your Dialysis Center
Psychologist
Psychiatrist
Counselor
Accountant/Bookkeeper to help manage medical bills
Non-Medical Emergency Transportation
While many of these services are free, many come with potentially high costs that may be difficult to pay for households already over-burdened by the cost, expense, time and mental pressure of caring for a child with a chronic disease.
Conclusion
The life of a pediatric kidney patient at school may be very difficult for the patient and his/her parents or caregiver. School is supposed to prepare students for a work life in adulthood. Just imagine the difficulties an adult would have in the workplace after school is over if they are of diminished size, with cognitive difficulties and medical, hospital and dialysis appointments that require a reasonable accommodation under the Americans With Disabilities Act from day one of employment. Success at school could mean success at the workplace. Every effort should be made to insure these children get their best shot at succeeding in school. Pediatric kidney patients deserve nothing less than our very best efforts to advocate on their behalf.
The American Association of Kidney Patients has recently started an initiative to bring to light the plight of the child kidney patient. Please join us! Visit https://aakp.org/pediatric-kidney-pals/ to sign-up for the newsletter and stay up-to-date on AAKP’s initiatives for pediatric kidney patients and their families.
References:
[i] School & Family Problems of Children with Kidney Failure, www.kidneyurology.org/Library/Pediatric/School_Family_Problems_Children_With_Kidney_Failure.php NIH Publication No. 06–5165, June 2006.
[ii] Id.
[iii] NBC News, Doctor’s text nagging prods teens to take meds, http://www.nbcnews.com/id/24581894/ns/health-health_care/t/doctors-text-nagging-prods-teens-take-meds(2008)
[iv] School & Family Problems of Children with Kidney Failure, www.kidneyurology.org/Library/Pediatric/School_Family_Problems_Children_With_Kidney_Failure.php NIH Publication No. 06–5165, June 2006.
https://aakp.org/blog/back-to-school/
JIM MYERS: WHY I’M A PEDIATRIC KIDNEY PATIENT ADVOCATE
JIM MYERS: WHY I’M A PEDIATRIC KIDNEY PATIENT ADVOCATE
From April 2018, AAKP Pediatric Kidney Pals e-newsletter article
You don’t have to be a parent of a child who has kidney disease or have been someone with pediatric kidney disease to be an advocate for this population. AAKP Board of Director's member, Ambassador for the state of Indiana and contributing editor of AAKP's Pediatric Kidney Pals e-newsletter, Jim Myers, has a heart for kidney kids. He was diagnosed with kidney disease in 1983, he was 25 years old. Jim was told at the time that he was young to have that diagnosis. Now, having lived with kidney disease for more than 35 years, he advocates for those suffering from this condition, and he especially advocates for kids.
Jim recalls seeing a video a few years back that kicked it off for him. It was a video of a mother of a small child with kidney disease, holding the child in a sink of cold water to cool off on a hot day. The child looked about 4 or 5 years old but he was really quite older. The child was very upset, he was crying, his face was red, and he had his little fists balled up. Jim recalls that when he saw that video he wondered what was wrong. Why was the child so upset? Then, he realized. The child was thirsty. He was on fluid restriction. He wanted a drink of water, not to sit in cold water! The child probably did not understand why everyone else could drink water and not him. Jim, then wondered, how do parents of kidney kids do it? How do you explain things like fluid restriction to kids? How do you explain all the other lifestyle modifications that come along with having kidney disease? How do you explain to them that everything being done, although difficult at times, is going to help them? His heart went out to kids who had to deal with these “grown-up issues”.
This is just one reason why, as an AAKP Board Member, Jim is leading AAKP’s Caring for Kidney Kids Initiative. AAKP has developed this initiative to unite this community of parents, families, kids and adolescents to help them:
Better understand chronic kidney disease
Be informed of all the available treatment options for their child
Have access to tools on how to manage issues that may come with kidney disease such as dietary modifications and fluid restrictions
Have access to supportive resources that show how kidney disease can impact the family dynamic and ways to cope
Have access to educational material designed specifically for this young population that will inform, inspire and help them understand what is going on in their body and the transition into adulthood – helping them to live a fulfilling life and achieve their aspirations regardless of what they may face.
From Jim and the entire AAKP team, please enjoy this first issue of AAKP’s Pediatric Kidney Pals!
https://aakp.org/uncategorized/jim-myers-im-pediatric-kidney-patient-advocate/
From April 2018, AAKP Pediatric Kidney Pals e-newsletter article
You don’t have to be a parent of a child who has kidney disease or have been someone with pediatric kidney disease to be an advocate for this population. AAKP Board of Director's member, Ambassador for the state of Indiana and contributing editor of AAKP's Pediatric Kidney Pals e-newsletter, Jim Myers, has a heart for kidney kids. He was diagnosed with kidney disease in 1983, he was 25 years old. Jim was told at the time that he was young to have that diagnosis. Now, having lived with kidney disease for more than 35 years, he advocates for those suffering from this condition, and he especially advocates for kids.
Jim recalls seeing a video a few years back that kicked it off for him. It was a video of a mother of a small child with kidney disease, holding the child in a sink of cold water to cool off on a hot day. The child looked about 4 or 5 years old but he was really quite older. The child was very upset, he was crying, his face was red, and he had his little fists balled up. Jim recalls that when he saw that video he wondered what was wrong. Why was the child so upset? Then, he realized. The child was thirsty. He was on fluid restriction. He wanted a drink of water, not to sit in cold water! The child probably did not understand why everyone else could drink water and not him. Jim, then wondered, how do parents of kidney kids do it? How do you explain things like fluid restriction to kids? How do you explain all the other lifestyle modifications that come along with having kidney disease? How do you explain to them that everything being done, although difficult at times, is going to help them? His heart went out to kids who had to deal with these “grown-up issues”.
This is just one reason why, as an AAKP Board Member, Jim is leading AAKP’s Caring for Kidney Kids Initiative. AAKP has developed this initiative to unite this community of parents, families, kids and adolescents to help them:
Better understand chronic kidney disease
Be informed of all the available treatment options for their child
Have access to tools on how to manage issues that may come with kidney disease such as dietary modifications and fluid restrictions
Have access to supportive resources that show how kidney disease can impact the family dynamic and ways to cope
Have access to educational material designed specifically for this young population that will inform, inspire and help them understand what is going on in their body and the transition into adulthood – helping them to live a fulfilling life and achieve their aspirations regardless of what they may face.
From Jim and the entire AAKP team, please enjoy this first issue of AAKP’s Pediatric Kidney Pals!
https://aakp.org/uncategorized/jim-myers-im-pediatric-kidney-patient-advocate/
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/
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/
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/
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