In honor of National Kidney Month, AAKP is sharing stories from AAKP Ambassadors on their unique outlook on life and kidney disease awareness. You can help spread the word about kidney disease this month by sharing your personal story with friends, family, and the kidney community. Kidney disease is a silent killer-let’s end the silence.
AAKP National Ambassador – Georgia
Carlos Copeland is an Atlanta native, husband, and father of two children. In 2013, Carlos became very ill. What he thought was simply a severe case of the flu turned out to be end stage renal failure. On a birthday trip for his daughter to the Mall of America in Minnesota, he received a call from his primary care doctor urging him to immediately return home to Atlanta and be prepared to discuss starting dialysis treatments. He was shocked to learn that both his kidneys were functioning at less than ten percent.
Carlos did dialysis treatments for a total of four years. Kidney patients are sometimes given the option to choose what type of dialysis best fits their lifestyle. Carlos chose peritoneal dialysis, a procedure where the patient hooks up to a home cycler through a catheter which is attached to the patient’s lower abdomen area. Peritoneal dialysis, or PD, worked best for Carlos and his family because it could be done at home. He was on the dialysis machine for an average of 6 to 8 hours daily and was luckily still able to work both a full-time and part-time job. Carlos was on the kidney donor list for approximately two years before finding a donor and going on to have a kidney transplant procedure.
Friends, family members, fraternity brothers, and teachers of his kids attempted to donate to him. His wife even tried but was unable as well. After many failed attempts, his wife and children posted a cry for help on Instagram stating that her husband/their dad desperately needed a kidney. After seeing the post, a complete stranger living in Texas was moved to donate one of her kidneys to him. On September 28, 2017, he received a lifesaving kidney transplant from Staci Erickson, his amazing kidney donor.
While on dialysis, Carlos found it very difficult to rest or sleep, so he would do various things to keep himself entertained. He did everything from binge watching TV shows and movies, playing video games, reading, and blog writing. He even applied to be on game shows. He was chosen to be on the television game show called “Beat Shazam” with actor Jamie Foxx. He and his donor were able to further share their story on the show with millions of viewers.
In September of 2020, Carlos celebrated 3 years with the “super kidney” as his donor calls it. Carlos has found great pleasure in helping other “kidney Warriors” who have experienced kidney disease and are waiting on a transplant. He is presently using his platform to speak at various kidney disease awareness events and functions. He also serves as a mentor and ambassador with The American Association for Kidney Patients (AAKP) in his home state of Georgia. His ultimate goal is to finish and publish a book that he has been working on so that it might serve as an inspiration for others.
One of the many beautiful things about his story is that his donor and her family reside many miles away in Perryton, Texas. He encourages other kidney warriors to use social media as an outlet to get the word out about organ transplants. You never know where or how your “kidney angel” will find you.
Victoria Schmalstig and Tony Schmalstig
AAKP National Ambassador – Ohio
Tony was born with a kidney that was mostly destroyed and the other one was heavily damaged due to a birth defect. After many surgeries and procedures before his first birthday, he was left with 1 functioning kidney. In spite of getting sick easily, he lived a fairly normal life throughout his childhood and teen years. However, he went into renal failure in 1983 and was placed on peritoneal dialysis. It was suggested to his family that they be tested to be possible living donors. His brother, Dennis, was a perfect match and the transplant took place on March 16, 1984.
Since then, Tony became a Corrections Officer for the Montgomery County Sheriff’s Office, where he retired in 2006 due to injuries. He also volunteered for Life Connection of Ohio, the organ procurement organization in Dayton, Ohio. Victoria was born with a disease called Reflux Nephropathy but was not diagnosed until she was three years old. With diet and a medical regimen, her kidney function was maintained until around her high school graduation, when it began to decline. A year later, her father donated a kidney to her and it worked well for the first six months. However, there was an undetected infection in her native kidneys that passed down to her father’s, and by the time the cause was discovered, it was too late to save the kidney. She married in 1994 and her husband volunteered to donate a kidney to her. This took place in 1996, but, unfortunately, the surgery was not successful. Not wanting another living donor, Victoria started peritoneal dialysis and was placed on the transplant list. After six years on peritoneal dialysis, she developed an infection and started hemodialysis in its place. Things didn’t go well after this and her health declined rapidly. When it was determined that she had but a few months to live, her brother, Michael, volunteered to be tested and Victoria consented. He was a perfect match and the transplant took place on March 4, 2003.
Tony and Victoria first met in 2006 at the Transplant Games in Louisville, Kentucky while competing for Team Ohio. The Transplant Games are Olympic style events held every two years where transplant recipients compete against each other according to age. While they were going through divorces, they began dating in 2010 and were married in 2015 with their brothers standing by their side. They compete together at the Transplant Games in bowling and have been dubbed “The Kidney Couple” by their friends in the transplant community. Together, they volunteer for Lifeline of Ohio, Team Ohio NKF of Ohio, AAKP, and the YNOTT Foundation. “March, National Kidney Month, is especially important to us since we both celebrate our transplant anniversaries this month. We never forget the sacrifice our brothers made to donate to us. They are our heroes and we’re forever grateful to them. We have made many memories that might not have been because of them. We are truly blessed!”
AAKP National Ambassador – Texas
My story starts on the night of July 8, 2019. Imagine your favorite episode of a popular medical drama on TV. Well, come with me because I experienced a real-life and death traumatic event and lived to tell the story. On July 8, 2019, I went into emergency kidney failure. You see, for days the symptoms were there but I didn’t realize what I was fighting. I thought I was battling the flu. My feet were swollen and I couldn’t put my shoes on, I was chronically fatigued and sleeping for days, food was tasting strange, like metal, I had a very unusual rash on my tongue (white bumps all over), my mind would race and I couldn’t really process or remember things at all, and my heart was having crazy palpitations. Overall, I was a mess! Finally, after my wife had continuously begged me to get to the ER, I attempted to get out of bed, but I fell completely to the floor. After being helped to my bed by my wife Melissa and son Jett, I attempted to urinate but could not! I knew then I was in trouble! It was time for 911! The ambulance came and got me quickly to the ER. On the way, I began to struggle to breathe. My lungs were filled with fluid, but I struggled with every breath as if I was running a marathon! At the ER, they began to do lab work and came rushing in saying that I was in complete kidney failure (stage 5 ESRD)! At the time, the hospital did not have dialysis available, so I had to be flown by helicopter to San Antonio, Texas (20-minute flight to receive emergency dialysis treatment. After we landed, I was rushed in and I remember the ER physician saying, “You better grab the crash cart,” (my potassium was 9). I then blacked out and didn’t wake for three days! When I came to the ICU, the process had already begun. I had been on dialysis for three days. I had hoses, tubes, and lines everywhere. Shockingly, they had already taken off 30 pounds of fluid. I was now on hemodialysis, not by choice, but it was lifesaving for me. I still remember the sounds of the machines, the smell of the room, the rumble of the helicopter, but most of all, I remember who was there: my family. If it had not been for the prayers and support of my family, I wouldn’t be writing this story for you to read. My family was the rock that I had to lean on in this time of trouble. I spent two weeks at Methodist hospital. During that time, I had a lot of time to think and reflect on what got me there. I had to do some soul searching and come to acceptance so that I could live because I definitely wanted to live. “If only I had taken care of myself, managed my type 2 diabetes and hypertension, exercised more, and ate right.” These are the thoughts that I had racing through my mind. I eventually left with a permcath in my chest and left to do dialysis in the center, I completely conformed to the renal diet, I started exercising more, and making better life choices. Ten months later, I graduated to home hemodialysis with the help of my wife as my caretaker. It wasn’t easy, but home dialysis was the better option for me.
It liberated my schedule and I could do it on my time. I took control of my life while having to dialysis and dealing with kidney failure (stage 5 ESRD). I did home hemodialysis for three to four months until August 11, 2020, the day I received my miracle gift of a transplant, by way of direct donation from a well-known family in my home state of Kentucky. I will forever be grateful for this gift of life. During my recovery, I really had time to think about what happened and what could have happened. I came to the conclusion that God spared me for a reason. I felt it was appropriate for me to become involved with organizations such as the AAKP, so I became an ambassador and am very proud to be a part of it. I also felt the need to help advocate for others in need of a living donor and share their personal stories with battling kidney disease, so I started an online show and podcast called “Hope with Jonathan.” It has been an honor to share so many patients’ incredible journeys! I’m currently volunteering with Kidney Solutions.org as the Social Media Director, and I’m also seven months transplanted and doing great! I’m blessed to be here, and purposely here to help others in need by sharing my story Support the AAKP, become an Ambassador today! Hang on to HOPE!
AAKP National Ambassador – Texas
Eusebio, known as “E.J.,” and his brother Luis Tamez grew up in Monterrey, Mexico, and eventually moved to San Antonio when E.J. was in high school. His mother became homesick, and his family moved back to Mexico while E.J. stayed in San Antonio to finish his education, graduating from St. Mary’s University with a degree in International Business in 1992. Luis moved back to San Antonio while E.J. was in college, working at the same restaurant and leaning on each other financially. Luis even helped pay for E.J.’s college textbooks. The brothers maintained their relationship through it all. Luis was diagnosed with end-stage kidney disease in 2016, starting dialysis shortly after, and although he and his brother had a close relationship, they did not discuss Luis’ kidney disease until it worsened to the point that he could no longer pick up his 5-year-old son.
E.J. took regular trips from Del Rio to McAllen to visit Luis, where he realized how rapidly his brother’s health was declining. He realized he wasn’t helping in the way he should have been. E.J. decided it was time to sit down with Luis and discuss what they had been avoiding for so long kidney disease. E.J. told Luis that he hadn’t heard about whether Luis was on the waitlist to receive a kidney transplant at the hospital in McAllen. Luis then made an appointment with a transplant advisor at the Methodist Hospital in San Antonio.
While Luis began testing and took preparations to be put on the kidney donation waiting list, a nurse asked E.J. if he had considered being a donor for Luis. Without a second thought, he agreed and without his brother knowing, was screened to see if he was a match. E.J. put it all in God’s hands, and he was a 100-percent match. Not yet telling his brother, E.J. researched living organ donations, learning that many patients have died while on the waiting list and that live organ donation was much rarer than deceased organ donation, although live donations have better outcomes. He met with a living donor and transplant advocate from Michigan who donated to a stranger and had encouraged two others to do the same. He became E.J’s mentor and calmed the nerves about the process. This inspired E.J. to become an advocate himself for living organ donation. The transplant took place on March 1, 2017, Ash Wednesday, three months after E.J. was screened. He received his ashes in recovery soon after waking from surgery. “You get used to being sick, and you don’t know what it is to be healthy anymore until you are,” Luis said after the surgery. E.J. says this touched him deeply. E.J. was a half-marathon and half-Iron Man athlete prior to surgery and regained his strength to finish and win a relay race with his family. Luis now goes to the beach with his family and cycles up to eight miles per day. Post-surgery, Luis told E.J., “Thank you for giving my kids their father back.”
Both Luis and E.J. now serve as spokesmen for live donor transplants, and E.J. serves as an ambassador for AAKP E.J., an avid motorcycle rider, and cyclist, created a motorcycle and cyclist FB page for kidney donors and those screened to become donors, HTTPS:// facebook.com/ShareLifeRideOn. He says that if he and his brother can help even one person, that makes a huge difference. There is nothing like knowing you helped someone regain their life, and no money can pay for that.
AAKP National Ambassador – Hawaii
My name is Noreen Baldwin, and I am, to the best of my knowledge, a second-generation Polycystic Kidney Disease patient. I was diagnosed at 16 after my mother discovered she had the illness. I always thought that of the two of us, I was the “lucky” one since my symptoms did not ever seem to be as bad as hers. That said, I always saw my mom and her journey as my possible “what-if’ and was always cognizant that at any point it could become my reality as well. Mom ended up on peritoneal dialysis in 2012, but you would never have known that she was not 100 percent just by meeting her. She still worked her full-time job as a gate agent at Hawaiian Airlines and figured out how to travel extensively, even with her PD machine. In January 2015, on my dad’s birthday no less, my mother was given the gift of a transplant. It was a new lease on life for her, and she was determined not to squander it. Sadly, we lost mom in 2017 to a fungal infection in her lungs, something she was extra vulnerable to because of her transplant medications. She was only 63. Since her passing. I feel as though the universe has conspired to help me not only honor her memory but to help me deal with my PKD. and help other kidney disease patients in the process. To help me process losing her, I chose to complete one of her bucket list items and visited every major league baseball stadium during the 2018 season.
I traveled with a sign that explained my journey, and I met hundreds of amazing people along the way. More than once, I happened to be at a game where there was either a kidney disease awareness or donate life event happening at the ballpark. I got to tell my mom’s story and talk about PKD and kidney disease along the way. That summer I also attended the PKD Conference in Kansas City (yes, I ticked off my Kansas City Royals game during the conference!) and got to revisit with so many inspirational people in the community who are doing amazing work, like Jeff Robertson, who is the Executive Director of the PKD Foundation of Canada. I also got to meet new heroes, like Jim Myers and Kevin Fowler, who are tireless advocates for patients with kidney disease. National Kidney Month is important because it is an opportunity for us to share information with others who may not know or understand what kidney disease is, or how they can help those of us who have it. Awareness is the key. Putting yourself and your diagnosis out there may be the key to helping someone else find the information they need for themselves or a loved one. You never know what connection may be the one to steer you in the direction you should be going. I know this because I have experienced it firsthand. I live in Hawaii but work for an airline and am based in San Francisco. UCSF has an amazing PKD Center for Excellence, and I worked on becoming a patient there for a while. While on that journey, my mother got her transplant at, you guessed it, UCSF. After she passed, I pursued my application even more intensely and included that my mother had gotten her transplant there. I was accepted as a patient! When I met my nephrologist there, I learned that she was also a “Jersey girl” and grew up about 15 minutes away from where I had grown up. It was like I was meant to be there. Then, in 2019, my husband happened to be playing in his band at one of our local spots and was wearing his PKD shirt. He wears it a lot at gigs and almost ALWAYS gets comments and questions about PKD. This particular time, the woman that he ended up speaking to because of the shirt turned out to be one of the founders of the PKD clinic at UCSF that I was now a patient of!