By Deborah Pelaez, AAKP Marketing and Communications Manager
In honor of National Kidney Month, AAKP is sharing stories from patients,
a caregiver and a healthcare professional 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 and perspective with friends, family and the kidney community – kidney disease is a silent killer – let’s end the silence.
David was at the peak of his career as a legal assistant investigator in Austin, Texas when his life took a drastic turn. At the young age of 36, David was diagnosed with kidney failure. The contributing factor leading to his diagnosis was high blood pressure; an ailment David mentioned is hereditary in his family. David knew his next steps would be difficult but necessary. He moved back home with family in Brownsville, Texas to begin dialysis treatment.
David was not aware at the time that high blood pressure could cause devastating effects. He took every opportunity during each of his treatments to learn about the disease. His eagerness and newly developed knowledge led him to become an advocate for others experiencing kidney failure, such as his father, who also underwent dialysis treatment at the same time as his youngest son.
David frequently drove 300 miles to University Transplant Center (UTC) in San Antonio, Texas to attend support groups. He also sat in the clinic lobby building relationships with patients and caregivers going through the same emotionally challenging journey. His visits to the hospital proved beneficial as he followed all requirements and was added to the transplant wait list. David knew the importance of compliance and continued to go above and beyond for nearly three years before another life-changing moment.
David received a call in 2011 informing him an altruistic living donor had come forward. Thanks to the Living Donor Exchange Program at UTC, David was an identical match to receive a kidney from a gentleman involved in a donor chain started by this Good Samaritan. The chain was made up of three people he never met. David’s transplant was made possible by a generous stranger. As excited as David was to hear there was a donor for him, he was humbly intrigued to learn about the multiple lives saved through the living donor exchange, something he had never heard of before.
David is currently the Patient Relationship Specialist at UTC. He dedicates all his work in his career and advocacy role in memory of his late father. This year, for National Kidney Month, David wants to focus on raising awareness about kidney disease, diabetes and high blood pressure. Early detection is key in the prevention of kidney disease. David will also continue to educate families on living donation. Kidney disease is a silent killer, and David hopes to help save lives by not being silent about the disease
Caregiver to her son Kellan, pediatric CKD patient with Atypical Hemolytic Uremic Syndrome (non-genetic)
Katie’s son Kellan was just seven months old when he contracted a virus that would change his life forever. He was in and out of the hospital for an entire summer. Then in August 2016, at just 10 months old, Kellan had a kidney biopsy and was diagnosed with stage 4 Chronic Kidney Disease. A rare viral induced disorder, called Atypical Hemolytic Uremic Syndrome, had caused kidney damage.
Katie says that Kellan’s diagnosis was life changing. She has now adapted to having kidney disease as part of her world and this life is her new norm. Even though she is a nurse by trade, she had no idea how much the kidney controls – Kellan’s feeding, blood pressure, heart, growth, speech, etc. have all been affected. Katie says she can’t just leave the house for a few hours – every aspect of any small outing needs to be planned out. Kellan has a port that is used for medication infusions, he takes multiple blood pressure medications and he also uses a feeding tube. The Bain Family recently took a vacation to Clearwater Beach. Katie says that she was amazed by the amount of planning that was involved into just getting permission to have medical supplies on an airplane.
Katie is also wife and a mother to Logan and her step-daughter Hannah, Kellan’s older siblings. She says that older brother Logan, who is eight years old now, was just five years old when Kellan was in the hospital a lot and it was difficult being away for extended periods. As Katie has adapted, so has the entire Bain family. Logan is a caring brother and will often offer to help with Kellan’s G tube feeds.
In honor of National Kidney Month, Katie wants other caregivers to know that it will get better. She encourages other caregivers to find out all the resources that are available, and to not be afraid to reach out and use them. She also says that it is ok, not to be ok. You will have down times – Katie says she certainly does, but the important part is to remember to pick yourself up because life will get easier. Katie says she speaks to many groups in Iowa where she lives and offers to be a resource for other caregivers because she knows how tough it can be.
Katie’s favorite quote that she often shares is: You never know how strong you are until being strong is the only choice you have.
DO, FACP, FASN Physician
Dr. Rebecca Schmidt takes care of kidney patients throughout the care continuum from those with early chronic kidney disease to those with kidney failure, such as patients on dialysis and in need of a kidney transplant. She works in multiple clinics across North-Central West Virginia, including hemodialysis clinics, and she also does telemedicine. She has worked with kidney patients for over 25 years. She chose Nephrology as a career because it was an area where she thought she could make an impact. She wanted a career that would allow her to care for patients with chronic illness, with whom she could build a relationship. She loves that her job allows her to be sensitive and show kindness to patients – she says that “sometimes kindness is all one can give to be helpful to patients.”
For Dr. Schmidt, National Kidney Month provides a special opportunity to highlight the growing prevalence of kidney disease. She says that kidney disease can often get overlooked because it does not have the “glamor” of cancer or heart diseases – people don’t really understand kidney disease. This is the month to really highlight how much this disease impacts the daily lives and aspirations of patients and their families. She hopes that increased awareness will in turn lead to better opportunities for patients as well as funding for research and innovation.
CKD patient, non-dialysis with primary idiopathic FSGS
Tessa found out she had a high amount of protein in her urine during a routine exam when she was 18 years old and pregnant with her son. What should have been a joyous time turned into a worryfilled, rough nine months with weekly doctor visits, monthly ultrasounds, two hospitalizations and new medications to help control protein, blood pressure, contractions and more. Her world was shaken and she had to quickly learn how to become her own advocate, researching her disease and learning how to live as healthy as possible.
Tessa gave birth to a healthy baby boy! Soon after recovering from pregnancy, she had a kidney biopsy and started aggressive treatment including high dose steroids and more potent medication for blood pressure and cholesterol.
She feels lucky that her kidney disease was caught before she reached kidney failure. Over the years, her disease has stabilized. Tessa wants to share this to others in honor of National Kidney Month:
• You have to have faith that it will work out.
• Count your blessings- you are still here and so am I.
• Know your body and what’s going on with it and your treatment. People make mistakes…and you know your body better than anyone. If you feel something is off, it probably is. Get second opinions if needed…educate yourself.
• Do your part in maintaining a healthy life.
• Connect with doctors that are knowledgeable in the treatment of your disease.
• Connect with other people going through (or who have gone through) similar situations. Share your story as you may be the person to provide hope for others.
Most importantly: Don’t Give Up! This may be a bad chapter, but it’s not the entire book.
Peritoneal Dialysis (1996- 1999), Deceased Donor Transplant (1999-2003), In-Center Hemodialysis (2003- 2018), Currently on Home Hemodialysis
Having battled kidney disease since birth, I think the biggest thing that I would like people to know, is everything. For something that affects such a broad and diverse demographic, with so many comorbidities that go along with kidney disease, I feel that the general public is at a disservice, not having more light shed on kidney disease, especially with high blood pressure and diabetes both becoming growing epidemics in America, and the two leading causes of kidney disease. We as a society are in a perfect place to slow the progression by raising awareness and educating the masses.
Kidney disease hasn’t so much changed my life, as it just “is” my life, being born with posterior urethral valve blockage and not expected to make it two days, it has just been a part of life. I always knew I would end up on dialysis and needing a transplant, it was never if, just when, and even with my kidneys lasting 10 years longer than expected, it was looming over me for as long as I can recall. So, I would say it’s changed my life, but it has added to how I see the world around me and I have developed an appreciation for every single moment. I learned so early the reality of mortality, and with that understanding. I realized the importance of the impact you leave behind on the world and I strive to live each day better than the previous. It developed me into an open book, wearing my heart on my sleeve and letting it bleed out daily in my poetry and art. I became fascinated with the world and the people around me, and their stories and became a quiet observer, as I took everything in. This also made me realize my own dreams and passions, and the value of finding that which truly makes you feel alive, and chasing it, even when the cards are stacked against you and you’re constantly told what you “can’t do” or is “impossible.” With this, I have set out on paths that do, in some way, seem impossible and are discouraging at times but, I am unable to give up, or back down. And thus, the journey continues, as I remain with a million dreams in my head, some, seemingly impossible… but are they really, though?”
Currently In–center Hemodialysis Patient, 24 years (3 years, transplant patient)
Diagnosed in 1994 with endstage renal disease, Maile’s family came together to support her immediately. Both her father, and her sister, donated a kidney to her. Unfortunately, at the time, no one knew that the Atypical Hemolytic Uremic Syndrome would come back and destroy the transplants. Luckily today, there is a new medication being used to keep patients with this rare disease in remission. In fact, Maile’s sister, with the same disease, will celebrate her 5 year transplant anniversary next month.
For Maile, kidney disease is about being grateful. She is grateful for all the people in her life. She is grateful for the last 24 years and all the love, generosity and hope that she has received.
She feels it is both her honor, and obligation to give back to the kidney community, especially during National Kidney Month.
This article was originally published in aakpRENALIFE, March 2019.