CEW Photos

My daughter Jadyn was a healthy active 17 month old when she suddenly was diagnosed with a pneumonia that turned into sepsis, Pneumococcal HUS(Hemolytic Uremic oSyndrome). She spent a month fighting for her life in the Pediatric Intensive Care at Levine Children’s Hospital, in Charlotte NC, followed by another month inpatient as she regained strength and we learned to navigate our new world of kidney disease. As a NICU RN I was familiar with PD but it’s a whole lot different when you bring it home. She left the hospital on 10 hour a day peritoneal dialysis, high blood pressure and with a feeding tube. After almost two years on dialysis, at 3 years old, she received a living donor kidney from her Dad, Michael. Overall she has done well, she does have hypertension that is managed with two medications (labetalol and amlodipine).

Jadyn is now a thriving 12 year old in 7th grade.

Jenny Flores is mom to Max, who is 4 years old and 2 ½ years post transplant. Jenny worked full-time until just recently. She and her husband, David found out that Max had PUV when she was 19 weeks pregnant. She had two surgeries in Columbus while still pregnant to give Max the best chance possible. Although their home is in Columbus, Max was born in Cincinnati and is treated at Cincinnati Children's where he received his new kidney from his dad. The great news is that Max has exceeded expectations from the get-go, and currently attends preschool several days a week. Jenny is thrilled that we have the opportunity through IROC to help to improve kidney care, and ultimately the outcome of how renal disease affects the lives of so many! Jenny also gave birth last year to daughter, Francesa. Her husband, David, and she are thrilled to have such a happy family.

Cassie Glotta is mother to Gavin, a kidney transplant recipient. Gavin has been hypertensive since his kidney transplant 9 years. ago. Gavin currently takes 3 different medications to manage his blood pressure (amlodipine, enalapril, and a clonidine patch). Over the years, we have been prescribed various blood pressure medications and gone through several dosage changes to get to this point where it seems pretty manageable. Yearly ABPM’s have also been a great tool in managing Gavin’s hypertension. We found that Gavin’s blood pressures spike at night while he sleeps. We have a blood pressure machine at home and I also have a manual cuff. I am not sure we are using the correct size of cuff since we have had the same size for 9 years. I currently use both methods to check Gavin’s blood pressure. I will normally go for the machine method first and if that pressure is slightly elevated then I will take a manual to compare. Unfortunately, I do not take Gavin’s blood pressure probably as often as I should. Currently I check Gavin’s blood pressure mostly when he is experiencing headaches, body pains, or nausea. I am very thankful for the re-education I have gotten from this group. It helps me as a parent re-prioritize how important blood pressure management is for Gavin’s long-term health.

Our daughter Lily had a kidney transplant in July 2016 due to a rare condition called Branchio-Oto-Renal syndrome. Lily was diagnosed at 10 months old and although we were told that she would most likely need a transplant before she was 10 years old, she was almost 12 when she received her kidney from Amanda's sister. We have lived in Potomac, Maryland since late 2009 and receive care at Johns Hopkins in Baltimore. Lily’s dad, Mark, is an oncologist/hematologist, Amanda is a marketing and communications consultant, Lily's younger brother Grady is in 4th grade and Lily is in 8th grade. Lily enjoys cooking, baking, dancing, and basketball.

Maria Hoffman has served as a Co-Chair of the Community Engagement Workgroup. She was diagnosed with renal dysplasia and neurogenic bladder at birth. In 1991, Maria underwent her first (and only) kidney transplant after her mom was approved to be a donor. Maria had her transplant at Cincinnati Children’s Hospital and was followed by them through her college years. Today, Maria receives her nephrology care at an adult center in Cincinnati, OH. Maria enjoys helping others going through the pre- and post-transplant journey. So much so that she currently works within the Division of Nephrology & Hypertension at Cincinnati Children’s where she received her transplant. Maria is also an active member of the National Kidney Foundation where she serves as a junior board member. She mentors families within the specialties of both Nephrology and Urology and serves as a co-chair on IROC’s Community Engagement Workgroup. In Maria’s spare time, she enjoys visiting and spending time with her two nieces, Emma Grace (7) and Olivia (5).

Kristin Sheffield Hunt was transplanted at Johns Hopkins University Pediatrics in 1994. I am 22 years post-transplant. I am currently the administrator for the Center of Public Health and Human Rights at the Johns Hopkins Bloomberg School of Public Health. I previously worked on clinical trials in Infectious Diseases on several Native American reservations. My passion is being a mentor to transplant recipients. I have coordinated the leadership program for Johns Hopkins Children’s Center’s Camp All Stars for the past 10 years. I am also an active member of Team Maryland of the Living Legacy Foundation, and our local TRIO chapter. For my commitment to volunteer work in the Baltimore community, I received the Martin Luther King Jr Community Service Award in 2013. I was invited speaker for the National Kidney Foundation’s annual gala in 2012, and was a nominee for the American Kidney Fund’s Hero of Hope Award in 2014. I have an amazing husband and beautiful daughter, yes I carried her myself! I want every transplant recipient to not just survive but THRIVE~

Nick Jones’ son Matty has a very rare condition called Dense Deposit Disease which affects less than 1 in a million. Diagnosed at 12 years old, Matty eventually went into Renal failure five years later in October 2017. Matt did not initially want to rush to transplant because of the chance of recurrence of his underlying condition. However, he was not doing well on dialysis and with a number of trials starting on new treatments for his condition we took the decision to go active on the list around August 2018 and were lucky enough to get a transplant November 2018. Matt is now 9 months post-transplant and doing so much better than he was - and as yet has no disease recurrence. He started at local community college this fall and plans to do a 2+2 course transferring to the University of Iowa. He has been in college 2 weeks and already has plans to go on to become a lawyer! Time will tell, but it’s fantastic that he is able to plan his life again.

Elizabeth Joshi is the mother to Recipient, Shaan. He received his kidney on August 31, 2016. His father, my husband, donated a kidney to him. In Shaan's 12 years, my husband has always been able to address his medical issues with Shaan's physicians, as he is also a physician. I have learned a lot from caring for Shaan as to his diagnosis and medical needs, but with my husband recovering post-transplant, as well, it was my responsibility to take the lead on checking Shaan's vitals when we arrived home from the hospital. The biggest issue I had with taking his blood pressure related to the size of his arms. The child cuff seemed a little too small, while the adult cuff was way too big. Listening with the stethoscope to get the readings was challenging, as Shaan would breathe heavily or make noises while I was trying to listen. He also would fight the cuff and try to take it off. I finally started using an electronic blood pressure machine but again, Shaan hated the cuff and my readings sometimes seemed off. Since Shaan has special needs on top of his kidney issues, taking blood pressure was always a challenge and I always wondered if there was a better and simpler electronic machine out there. Are there such devices?

Melinda Johnson’s youngest son, Cameron, was 11 when he unexpectedly and very suddenly went into kidney failure. It was later determined that Cameron had developed a rare form of vasculitis, called Microscopic polyangiitis (MPA), which had silently damaged his kidneys and lungs. His lungs quickly improved with treatment, but his kidneys could not be saved, and he needed to go on dialysis. He did hemodialysis for about a month in the clinic at Phoenix Children’s Hospital before he could transition to peritonial dialysis, which he then did every night at home for the next 19 months. Cameron received a kidney transplant at Phoenix Children’s from a deceased angel in February, 2018. He is now 13 years old and is doing great! He enjoys playing volleyball, playing with his pug, and just being a normal kid. Cameron lives in Chandler, Arizona, with his family, including his dad Phillip and older brother PJ, and the two family dogs – Naja and Kipper the pug (Cameron’s dog!) Melinda works as a professor of nutrition at Arizona State University, and is excited to get involved with IROC’s Community Engagement Workgroup.

Traci Kozak-Krist is a living donor. Her husband Matt is also a living donor. Their son, Tanner, who was born with malformed kidneys, is the recipient. Traci and her family support kidney patients thru advocacy and outreach opportunity with IROC, the National Kidney Foundation, Kidney Foundation of Western New York, the Transplant Games of America and Connect Life Blood and Organ Donor Network. Traci currently teaches 3rd grade at Letchworth Central School District in Gainesville, NY.

Jack Lennon was diagnosed with posterior urethral valves (PUV), an obstruction that caused damage to his bladder and kidneys, immediately at birth. He had a very complicated first few months of life, including a nephrectomy, but was able to sustain on his remaining native kidney until the age of seven.

Jack received his first pre-emptive kidney transplant at Cincinnati Children’s Hospital in 1995 from his dad, Chip. Through a journey of smooth sailing and some rocky passages, Jack would go on to receive a second kidney transplant in 2008 from his mom, Jill, and a third perfectly-matched kidney in 2014 from his older brother, Joe.

Jack is 4 years post his most recent transplant and followed by an adult nephrologist. He is a normal, active 30 year old, living in Cincinnati. He has been employed at Cincinnati Children’s Hospital for over 6 years, having had positions in the Division of Nephrology, including the Kidney Transplantation Program Manager, and is now in Organizational Strategy & Growth.

Jack spends his time with his wife, Anna, his dog, Layla, friends and his two other siblings still in Cincinnati, Nick and Annie. He enjoys traveling, golf, sketching, and camping and fishing. He also is a fan of Xavier University basketball and Ohio State football. He is also active in Greater Cincinnati’s chapter of the National Kidney Foundation, and has served on national advisory bodies such as the FDA and CMS. Jack is excited for the endless potential of IROC, and specifically the work of the Community Engagement Workgroup!

Marsha Perez’s youngest child is a son who received hemodialysis (HD) treatment and a kidney transplant at Lucile Packard’s Children’s Hospital. Her son did HD for eight months and he received his new kidney when he was 16 years old. He is now 20. He is going to college, working and loves playing soccer in his spare time. Since he is a young adult now, he has been transitioned to an adult renal team. Marsha is married and also has a daughter. She works full time but also does parent mentoring in English and Spanish for the dialysis/renal patients at Lucile Packard’s Children’s Hospital.

Ansara Piebenga’s younger daughter, Lauren, was diagnosed with primary hyperoxaluria at four months of age. She received a year of daily hemodialysis and nightly peritoneal dialysis at Children’s Mercy Hospital in Kansas City. Once large enough for transplant (10 kilograms as the magic number, and fed only through a gastric-tube), Lauren received a combined kidney and liver transplant at 16 months of age at Stanford’s Lucile Packard Children’s Hospital. Lauren is now 11 years post-transplant and is a happy and active 12 year old who loves running track, playing basketball, and hanging out with her older sister, Ava, and her dad, Jon. Lauren and her family live in Charleston, SC, but her nephrology care continues to be provided by Children’s Mercy Hospital in Kansas City, MO in collaboration with Stanford in Palo Alto, CA. Ansara volunteers for the Medical University of South Carolina, has served as a mentor to other families facing chronic kidney disease for 11 years, and is currently Co-Chairing IROC’s Community Engagement Workgroup.

Brittany Regan is a patient at Children's Hospital of Philadelphia. Brittany says, "I am two years post-transplant. Ever since I had my transplant my body responded well to it. That also includes me taking my medicine how I am supposed to. I really love meeting new kidney patients because the kidney stuff is my passion now. When I am older I want to become a Nephrology Nurse. I am in college right now trying to accomplish that goal."

Sarah Reid's youngest son Teddy, now 6, was born with renal failure caused by dysplastic kidneys. His renal failure was managed medically for a while, then he received peritoneal dialysis for a time. After a rough few years, he received his transplant in July 2013 at the age of 20 months. He is still primarily tube fed and has developmental delays and neurocognitive deficits. The family lives in Des Moines IA and Teddy receives care at the University of Iowa in Iowa City. Teddy has two older siblings: Wally is 13 and Genna is 9. They are a homeschooling family and Sarah also works from home. She is the owner of Wallypop and Boulevard Designs, making primarily baby carriers and special needs items like feeding tube accessories, hospital gowns, and weighted blankets.

I am Noel Resor and I am a transplant recipient at Riley Children's Hospital. I am 18 years old and two years post-transplant. I am finishing my freshman year of college at Indiana University Purdue University of Indianapolis (IUPUI) and have been working with IROC for a little over a year now. I personally want to help find a concrete way to not only measure quality of life for patients but also improve it.

Victoria Reyno is mom to son Hudson, who is 2 ½ years post-transplant! Victoria was 27 weeks pregnant with Hudson and his twin sister Harper when she found out Hudson had posterior urethral valves (PUV) which had already caused damage to his bladder and kidneys. Victoria had many small procedures to relieve the fluid on Hudson’s bladder and kidneys throughout the end of her pregnancy to provide the best possible outcome for Hudson once he was born. Hudson and his sister were born at 35 weeks and Hudson had surgery at 18 days old to ablate the obstruction. Hudson was followed by the pediatric nephrology team at University of Maryland where he received his new kidney when he was 3 years old from his mom on May 4, 2016! Since transplant, Hudson is now being cared for and followed by Johns Hopkins pediatric nephrology. Victoria is an elementary school teacher and her husband, Hudson’s father, works for the Navy. Hudson loves to play soccer, spend time at the beach with his family, and this year has started Kindergarten with his twin sister!

Rene Shumate, RN, MSN - I am a pediatric kidney transplant nurse. I graduated from Johns Hopkins School of nursing in 1991 and have been working at Hopkins ever since. I worked inpatient for 13 years and transitioned to the outpatient setting where I have been working with the department of Nephrology for the past 17 years. The best part of my role is working with patients and families. The most difficult part of my role, yet extremely important, is transitioning pediatric patients to adult providers. I am excited to be a part of the IROC Community Engagement Team; to meet new people, hear different perspectives and work collaboratively towards improving patient outcomes.

Deb Sternhagen’s son Chase was diagnosed with Focal Segmental Glomerulosclerosis (FSGS) at the age of seven. When he was 12 he had a pre-emptive kidney transplant (he never did dialysis) at the University of Iowa Children’s Hospital and Clinics. We just celebrated his 4 year “kidneyversary.” Chase is now 16 years old and is enjoying high school and all that it has to offer, including participating in drama, basketball and speech. Chase & Deb live in Monticello, Iowa with Chase’s dad, Ron, and his younger brother, Caden. Chase also has two older siblings, Carter & Corey and a niece, Aria. Chase continues to be treated at the University of Iowa Children’s Hospital. Deb works full-time as a product manager at a tax preparation software company and is passionate about helping to educate people about the impact of kidney disease and transplant.

Diana Streat’s daughter, Addie's kidneys started to fail unexpectedly at 18-months old. By 2-years old, her kidneys were kaput and she was on hemodialysis and later, peritoneal dialysis. At age 3, Addie received a living donor kidney transplant. Now at age 12, Addie is a healthy, active kid.

Addie and her family live in Seattle, WA, where her nephrology care continues to be provided by Seattle Children's Hospital. Diana and Derek are active in IROC as co-chair of the CEW (Diana) and a board member (Derek).

Heidi Unruh's son, Jack, had his kidney transplant 2 days shy of his second birthday in 2011 at Lucille Packard Children's Hospital. Heidi was the donor. During Heidi's 20 week prenatal ultrasound, they discovered that Jack had a keyhole shaped bladder and dilated ureters, and they suspected posterior urethral valves (PUV), although this was never confirmed. He was born at 35 weeks with renal failure, but managed to avoid dialysis for his first year of life with fluid and electrolyte management. He started peritoneal dialysis at age one until his transplant. Jack is now 9 and doing well. He lives in Seattle with his big sister and parents and is treated at Seattle Children's.

I received my renal transplant in December of 2008 and since then have seen my share of ups and downs. With the love and support of my Nephrology team though no task seemed too daunting. To be involved with an entire community who share the same goals and attitude as the doctors and nurses I have had the privilege to work with is truly exciting. I am ecstatic to work towards better health and better lives for all transplant recipients, donors, and caretakers as a member of IROC.

Ann Wiesman - Is the mother of Logan, a 7 year old boy with PKD (Polycystic Kidney Disease). He is a patient at Cincinnati Children's Hospital. Logan has had issues with his blood pressure for 5 years and for the first 3 years his blood pressure was managed successfully with various medications. Eventually, however, his kidney function started to decline. This was the catalyst that pushed us into an 18 month long myriad of mix and match blood pressure medicines to attempt to regulate his now uncontrollable blood pressure. Eight different medicines were tried over this timeframe with minimum positive results. We adjusted his dosage 11 times. Finally, Logan was transplanted in June 2017 and our family is starting to adjust to post-transplant life. My husband and I joined IROC in 2017 and are hoping to help others experiencing similar challenges related to kidney disease. Logan recently wrote a book called "My Bumpy Kids" and he, along with his brother, Ethan, have joined together to raise awareness about PKD.

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My name is Dave Wiesman. I am the father of a seven-year-old who has PKD (Polycystic Kidney Disease). Logan was diagnosed when he was two years old. His kidney function was on a slow decline until late 2016 when he entered stage four renal failure. We started his donor search in January of 2017. Between April and June Logan had a left and right nephrectomy with a kidney transplant. After his first surgery, Logan’s blood pressure was so unmanageable we were in the ICU for weeks and had to be put on five very potent medicines to keep it in a ‘non-scary’ range. After transplant, Logan is still on impressive medications for blood pressure; however, we are weaning him down slowly. We are a Cincinnati Children’s Hospital family and still somewhat new to transplant but are excited to get this opportunity to share with this group our experiences through the eyes of a newbie. I had the rare experience of quitting my job and being a stay at home parent over the summer to help both Logan and my other son Ethan navigate what this means for our family. As of last Monday, I am back to work. It was a short lived but great experience

Dr. Amy Wilson - I am a pediatric nephrologist at Riley Children's Hospital, in Indianapolis, where I have been in practice since early 2010. I earned my MD at Johns Hopkins, and completed both Peds residency and pediatric nephrology fellowship at Cincinnati Children's Hospital. The rest of my life is defined by my roles as wife & mom (see photos). I also have the honor of serving as camp doctor for the NKF of Indiana's annual Kidney Camp. I joined the CEW to further my learning from patients and families, and to (hopefully) serve as a sounding board and "medical reference" for the group.

Leslie Wyers, married to husband, Curtis, for almost 20 years and has three beautiful children. twin boys- Drew and Logan- who are 17, and daughter Kylie who is turning15 . Our family also consists of Rodeo, our 14 year old Border Collie, and new puppy, Rosie, along with mini horse, Flash. We reside in Columbus, NJ- about 20 minutes south of Princeton- closer to Philly than NYC- so we follow all Philly sports teams and that pretty much sums up how NJ is split.:)

I am a lifelong educator, starting out as a special education teacher 29 years ago, leading to being on the child study team as an educational consultant and most recently a supervisor of special education. I had a love of horses along with a calling to work with special needs children so I combined the two into a therapeutic riding program called Saddle Up- which I eventually had to give up when my children got sick- but I hope to one day return to riding.

My kidney journey started a little over 9 years ago, when Logan was diagnosed with Nephronophthisis- a recessive gene NPHP mutation that led to end stage kidney failure and transplantation by living donor on November 15, 2011. My daughter also was diagnosed with Nephronphthisis and received a living donor kidney from a VERY good family friend on March 4, 2014. Our family started The NephHope Foundation to support families with the same diagnosis. We invested in a researcher and were published in two articles as a funding source. We also support families at CHOP ( Children's Hospital of Philadelphia) who come in for kidney transplants with BIG care packages to make the hospital stay manageable. I also served on the Patient Affairs Committee of UNOS for three years, helping author "What Every Parent Needs to Know about Transplants". I also worked with the American Society of Transplantation ( AST) and filmed a PSA for living donation under their Power2Save outreach.

I am excited for the opportunity to meet others who have walked in my shoes as that is something I have been personally longing for. Two areas that are important to me is the need for continuity among centers and transition to adult services. I love to be able to help others to know they are not alone and also challenge the status quo in the field.

Jen Wyman’s youngest child, Kacy, was diagnosed with a rare disease called Cystinosis when she was 4 years old. She was born with the disease, but because of the rarity was a late diagnosis. She spent 2 weeks in Beaumont Hospital in Royal Oak, Michigan. While there she was stabilized, received a g-tube placement, and was sent home with multiple medications and a whole new life. Kidney disease is/was a secondary problem that affects all Cystinosis patients at some time in their life...typically the later the diagnosis the younger the transplant age. Kacy was transplanted in May, 2015 at 12 years old at the University of Michigan in Ann Arbor, MI, where she continues her transplant care. She is now 15.5 years old and a freshman at Bloomfield Hills High School. She is on the school swim team, a summer swim team, works out regularly, babysits, has a boyfriend, is driving with a permit and lives a very normal teen life. Our family lives in Bloomfield Hills, MI. We also have 2 sons, Matt (24), who graduated and played football at the University of Kansas and now lives and works in Troy, MI and Jack (22), who is a senior at Albion College. He plays baseball and is part of the Army ROTC program. He will graduate in May and will be an officer in the Army. My husband (their dad) is a Financial Advisor/Attorney. I was a teacher for a few years before I had my children and have my Masters Degree in Educational Psychology. I am very active in the Cystinosis Research Network. I have served in many different capacities, and am now the VP of Family Support. I also volunteer for an organization called CareHouse, which serves abused children in our county. I am looking forward to working with IROC.’s youngest child, Kacy, was diagnosed with a rare disease called Cystinosis when she was 4 years old. She was born with the disease, but because of the rarity was a late diagnosis. She spent 2 weeks in Beaumont Hospital in Royal Oak, Michigan. While there she was stabilized, received a g-tube placement, and was sent home with multiple medications and a whole new life. Kidney disease is/was a secondary problem that affects all Cystinosis patients at some time in their life...typically the later the diagnosis the younger the transplant age. Kacy was transplanted in May, 2015 at 12 years old at the University of Michigan in Ann Arbor, MI, where she continues her transplant care. She is now 15.5 years old and a freshman at Bloomfield Hills High School. She is on the school swim team, a summer swim team, works out regularly, babysits, has a boyfriend, is driving with a permit and lives a very normal teen life. Our family lives in Bloomfield Hills, MI. We also have 2 sons, Matt (24), who graduated and played football at the University of Kansas and now lives and works in Troy, MI and Jack (22), who is a senior at Albion College. He plays baseball and is part of the Army ROTC program. He will graduate in May and will be an officer in the Army. My husband (their dad) is a Financial Advisor/Attorney. I was a teacher for a few years before I had my children and have my Masters Degree in Educational Psychology. I am very active in the Cystinosis Research Network. I have served in many different capacities, and am now the VP of Family Support. I also volunteer for an organization called CareHouse, which serves abused children in our county. I am looking forward to working with IROC.

Gerilyn is the mother of twin boys, Kaleb and Adon, who are 17 years old (their birthday is actually next Sat March 9), and the wife of Nigel who has been active duty Navy for 23 years. Her boys were born six weeks early when doctors discovered that Kaleb was born with PUV and only one kidney. At 20 weeks gestation Gerilyn had an ultrasound where they diagnosed Kaleb with having a key hole bladder, but the family never thought it would lead to Kaleb being born with CKD. Shortly after her boys' 16th birthday Gerilyn and her family moved to Orange County, CA to be closer to Ronald Regan UCLA Childrens Hospital for Kaleb's kidney transplant. Due to the transplant still being new, Kaleb struggles with ups and downs in his lab tests and the family is praying it will stabilize by his one year mark, allowing Kaleb the opportunity to start his Senior year of high school healthy and happy.

Kaleb was also diagnosed at a very young age with ADHD, and ever since the transplant his ADHD specific meds provide difficult side effects. Kaleb is currently on his third, different, ADHD medication post transplant and, again, the family is praying things stabilize by his one year transplant anniversary.

Being apart of IROC has allowed Gerilyn to learn alot about the renal community and has given her the feeling of not being alone. "I am very grateful for IROC and all they do for renal patients and their families.