NKF Serving Maryland and Delaware - Mission Stories

My love for kidney disease started in May 2000, when I was hired as a patient care technician in Milford, DE. I had no idea what kidney disease was or how many it affected, but it did not take long for me to realize that it was where I was supposed to be in life. Fast forward to August 2004, when my now husband started at the clinic, I worked at as a dialysis patient. We started dating in January 2005, married in September and in March of 2007, I became his living kidney donor. April of 2009 marked the first Southern Delaware Kidney Walk, which is where our volunteering started. It was a family affair, where my husband Michael, son RJ, and my mother Ginny and her husband also volunteered. As the years passed, we have been able to enjoy family vacations, life without dialysis, concerts, and many other good times. In September 2022, things changed when my mother was hospitalized and found out she had CKD and required dialysis. No one knows what challenges this life will bring. Kidney disease is a “silent killer” sometimes with no warning. Kidney disease has come full circle to me and my family. Unfortunately, my mother is not eligible for a kidney transplant due to other health reasons but with my knowledge and experience I have been able to help her, and hundreds of patients navigate life with kidney disease. May of this year will mark 24 years of working in the kidney disease/ dialysis world. Kidney disease not only affects the person but the whole family, with a complete lifestyle change. Even my son, RJ knows the right questions to ask at his job as an Optometric Technician when he is checking in patients for the physicians. My role as a Community Outreach Assistant with the NKF has been rewarding because I can use my knowledge of working in the dialysis clinic. I will continue to tell my story and to educate people whose lives I touch.

In May 2006, I was 40, living my best life, newly married and enjoying watching ball games and concerts with friends. I also loved my job, a pharmaceutical rep for Abbott Labs. I loved interacting with physicians and medical staff. Plenty of evening and weekend events, and I was eating (and drinking) quite well. One day I was driving to work and suddenly felt a sharp, intense pain in my left side. I literally had to stop the car and try and breathe. After a few minutes, the pain subsided enough to move and get help. I went to a primary care office, where the doctor ran some tests. After waiting the weekend, the doctor told us I had a kidney stone, but it turned out to be renal cell carcinoma, (kidney cancer).

To say I was surprised would is an understatement. I felt really healthy, I was exercising regularly and eating well. No one in my family had ever had kidney issues. We did our research and decided to have a laparoscopic partial nephrectomy at Johns Hopkins Medical Center. The surgery was set for June 2006, only a month later.

The surgery went well and after several days in the hospital I went home to rest for a few months. During my follow up, my doctor had yet another surprise for me. He told me that the pathology report came back with a rare form of kidney disease called Focal Segmental Glomerular Sclerosis (FSGS). I was shocked to have two kidney issues in a matter of months. Through some diet restrictions, close monitoring of my symptoms, lifestyle changes, and medication, I have been able to maintain decent kidney function.

Today, I’m doing well. I feel good and I enjoy speaking to others about my story. I started my own healthcare consulting firm a few years ago and many of my clients work with kidney disease patients. It was these business connections and experiences that led me to be on the advisory board for the National Kidney Foundation serving Maryland and Delaware. I really enjoy fundraising and educating others about kidney disease. The NKF is a strong advocate and educator for patients who have challenges with the disease. I’m really proud to be able to help the organization grow while also helping patients and the community understand kidney disease.

Rachel Cessna is a married mother of four; she has a daughter at Penn State and 11^th, 10^th, and 5^th graders. One day she saw a post on Facebook about a girl who needed a kidney. Rachel thought “Why not me?”. This thought kept nagging at her and prompted her to get tested.

Meredith was the girl in need of that kidney.  It turned out that not only was Meredith’s father the teacher of Rachel’s oldest daughter, but Meredith’s aunt, an assistant teacher at Rachel’s younger child's school, overheard a conversation about a student’s mother who was going to donate a kidney to a 13-year-old. As it turned out, that 13-year-old was Meredith, her niece! Talk about 6 degrees of separation! Rachel donated her kidney in October of 2019. On Christmas Eve that same year, just a couple of months after the transplant, Meredith’s mother left a letter for Rachel, and they connected on Christmas Day!

Rachel is an avid athlete and since surgery has participated in several events through an organization called Kidney Donor Athletes. She has done a ½ Iron Man which is a 1.2-mile swim, 56-mile bike ride, and a ½ mile run. She has also participated in an 8-mile relay swim in Florida, which included kidney donors from all states!

Rachel says there has been no change in her active lifestyle since her kidney donation. She continues to keep fit, participate in races, drinks a lot of water, and gets annual checkups. Rachel spends her time doing the things she loves and connecting with others in the kidney community. 

With over 40 years of experience with event planning, catering, retail, and culinary entrepreneurship and while running Maryland’s beloved Mamma Mish’s Homemade Dishes. Michele Love has an extensive love and passion for bringing people together. As NKF Serving Maryland & Delaware’s Event Director this year for Sante’- Giving Back for Kidney Disease, she has a special connection to our organization. This year, she celebrates 10 years of being a living kidney donor!

"We met through God who connected a friend of mine and Sal’s daughter Lauren who went to college with her. On New Year’s Day, a post was shared, and I saw it for a B-positive donor for a kidney. I answered the post after being in church on New Year’s Eve praying for God’s plans for the new year! Which included blessing someone with life! I had known for a few years that the Lord was putting on my heart to donate a kidney. 2014 was the year. I saw the post and within a few hours, I was speaking to the family of Sal. His daughter Lauren was his advocate for a kidney donor. This was in January 2014. I met Sal, his daughter, and his wife in March 2014- ironically, National Kidney Month. We began the process of physical, mental, and spiritual planning, praying, meetings and appointments. I was given the go-ahead May 2014 and the surgery was set for July 1, 2014. The first picture is the day before surgery, second is our first anniversary celebrating our kidneyversary and the last is our last time celebrating together given I was super busy with Mamma Mish’s and could not get to NY visit. This year marks our 10-year miracle anniversary, and we are looking forward to gathering together to celebrate this huge milestone."

As told by her mom, Brittany Merritt:

From the day Alexis aka “Lexi” was born, she has inevitably lit up the lives of anyone who she encounters. Her determination to progress through the odds has been not only an inspiration to her community, but also to her brilliant team of health care professionals who support her journey. Throughout the countless surgeries, extended hospital stays, lab draws and doctor visits, Lexi has continued to find the joy of living life in the best possible ways along with the advocacy and support of her loving mother.

Her journey began when she was diagnosed with Hypo-plastic Left Heart Syndrome at 26 weeks gestation. One of her first surgeries was an attempt to save her heart through a hybrid procedure. Her ventricular function was still very poor after the procedure and doctors quickly realized that the only options were to either transplant or do nothing. Receiving her first heart transplant at just 30 days old, Alexis defied the odds all while not missing a beat developmentally. She quickly became accustomed to the medical routine that her diagnosis and treatment required. By Christmas Eve of 2018, it seemed all of her luck had run out. She was admitted into Johns Hopkins Pediatric ICU with acute heart failure. The heart that she received as a newborn lasted her seven years and was now rapidly slipping into 2R rejection.

Although hope seemed to be lost, her medical team rolled their sleeves up to come up with the best plan of care. The wait seemed endless but in May of 2019 the call of a lifetime was received, and her heart was successfully transplanted for the second time in her life, all before the age of 9. Recovery had a more twists and turns this go round with the involvement of Lexi receiving a Tracheotomy placement to support a method of breathing that gave her the ability to participate in PT and OT.

Recovery in total lasted 14 months including the nine months spent at Mt Washington Pediatric Rehabilitation Hospital. The waiting period for a new heart was full of terrifying moments that inevitably caused damage to other functioning organs. Her renal function took a huge hit, but the complexity of the damage did show itself until recently, causing her to be dialysis dependent since January of 2023. Initially begins her dialysis journey on hemodialysis, she is currently receiving nightly peritoneal dialysis at home facilitated by her caring mother.

Hemodialysis was a bit more stressful because she didn’t enjoy being tethered to a machine for hours at a time. Peritoneal provides a bit more freedom since the cycles run while she sleeps. There are still a few drawbacks, like having to be precise about timing the start of the cycles so that she may be unhooked in time to participate in any plans the following morning. Sleepovers are restricted to those trained in the proper set up of the cycler.

Lexi currently attends Pikesville Middle School’s virtual program. She loves cooking, anime, creating art of various forms and spending time with family and friends. Her current goals are discovering her passions and finding what motivates her outside of hospital related things.

She is currently on the transplant list. We got a call two months ago, but it ended up not being the best fit for her. We are currently navigating the thoughts and feelings surrounding the raw and unapologetic emotion that comes with disappointments like this. We’re also taking time to find moments of joy during the waiting period.

Through the triumphs, the scares and everything in between, her mother, Brittany, has been at her side (often times at her literal hospital bedside) every step of the way. From that frightening Christmas Eve in 2018, Brittany dropped everything not knowing what tomorrow would bring. But through it all she has saw to it that Lexi was never alone during the unimaginable trials that simply can’t be summed up in this small synopsis.

Brittany has made it her mission to see that Lexi has the best options available to her through endless research, sacrifice, and constant collaboration with her team of esteemed health professionals. Lexi and Brittany’s lives exude the saying that “no man is an island.” Their community has help to bring light during the darkest of days and they wish for their lives to be a beacon of hope, a reminder that you are never alone.