For nearly two decades, AAKP Ambassador Fiona McKinney has lived with dialysis while remaining determined to stay as healthy and informed as possible. Her story reflects the resilience of patients managing kidney disease—and the importance of phosphorus awareness in protecting long-term health.
Fiona’s kidney disease journey began long before she was formally diagnosed. Growing up in Ireland, she experienced severe pain and other symptoms starting at just six years old. At the time, doctors struggled to identify the cause.
“When I was young, our family doctor told my parents I was a hypochondriac and just looking for attention,” Fiona recalls. “It wasn’t until I was sixteen that I was finally diagnosed with glomerulonephritis.”
Despite the seriousness of the condition, the diagnosis brought a sense of relief. “I thought I would finally be believed and get the help I needed,” she says.
At the time, there was limited information available about glomerulonephritis in young patients in Ireland. Determined to find better care options, Fiona moved to New York in her early twenties. There, she was able to stabilize her condition and lived without signs of kidney disease for nearly 20 years.
But in 2008, her health suddenly changed and she began dialysis treatments. Today, nearly 18 years later, she remains diligent about managing her condition while staying hopeful about the future.
“I am compliant with my treatments and doing as well as possible,” she says. “Right now, I am being considered for a sibling stem cell transplant program in Boston. If successful, it could allow me to receive a living donor transplant from a sibling and avoid a lifetime of immunosuppressant medication. I’m hopeful this will work for me.”
Working and Living with Dialysis
Fiona continued working for many years while receiving dialysis, demonstrating the determination many kidney patients show in maintaining independence and pursing their aspirations.
“Most of the time I was given flexibility to accommodate my treatments,” she explains. “My boss allowed me to work from home the morning after dialysis, which really helped because treatments often left me nauseous, with low blood pressure, and intense pressure in my head.”
However, when management changed at her company, so did those accommodations. She found it more difficult to maintain the same work arrangement.
“Kidney disease and dialysis can be a ‘not-so-visible’ disability,” she says. “People often don’t understand what patients are dealing with. Finding the right employer who understands that can be challenging.”
Today, she works independently, which allows her greater flexibility to manage her health.
Understanding the Importance of Phosphorus Management
From the beginning of her kidney failure diagnosis, Fiona understood the importance of managing phosphorus levels.
“The renal nutritionists in my dialysis clinic are wonderful,” she says. “They always explained clearly how kidney failure impacts phosphorus levels and gave me charts showing which foods are higher in phosphorus.”
For people with kidney disease, excess phosphorus can build up in the bloodstream, leading to serious complications.
“High phosphorus levels can cause calcium deposits in the blood, which can affect the heart and lungs among other organs,” Fiona explains. “It can increase the risk of cardiovascular disease, vascular calcification, and weak or brittle bones. It can also cause severe itching, known as chronic kidney disease associated pruritus (CKD-aP) and skin problems.”
To manage these risks, she carefully monitors her diet, reviews her monthly blood test results, and takes a phosphate lowering treatment with every meal.
“My phosphorus levels are almost always within the proper range,” she says. “But even with good control, there can still be long-term effects after many years on dialysis and managing phosphorus.”
She has experienced some of those complications firsthand. In one instance, a routine mammogram detected what doctors initially feared might be cancer. After a biopsy, it was determined to be a calcium deposit—likely related to long-term dialysis and the ongoing need for phosphate binders.
The Role of Phosphate-Lowering Therapies
Phosphate-lowering therapies (PLTs), such as phosphate binders, have been a critical part of Fiona’s treatment plan from the beginning.
“They help keep my phosphorus levels stable,” she explains. “Fortunately, I tolerate the medication well, though I know some patients experience stomach irritation that can make taking them more difficult.”
For Fiona, the combination of medication, diet, and regular monitoring has helped her maintain healthy phosphorus levels throughout her dialysis journey.
Policy Changes Create New Challenges
In January 2025, the Centers for Medicare & Medicaid Services (CMS) implemented a 2024 policy change that placed oral-only medications—including PLTs—into the End-Stage Renal Disease (ESRD) payment system – known as the “Bundle.”
For patients like Fiona, this change created new challenges in accessing much needed medications.
“For 17 years, I received my medication from the same pharmacy” she says. “They were reliable and always sent reminders when my prescription was running low.”
After the policy change, she had to obtain her medication through her dialysis clinic instead.
“I didn’t even know my clinic had a pharmacy,” she says. “I had a lot of questions—about reliability, safety, and whether they could deliver the medication on time.”
Although clinic staff helped manage the process, delays occasionally occurred.
“There were times when my prescription didn’t arrive on time, and I was left without this important medication to take with meals,” she explains.
The new system also reduced the supply patients can receive at once.
“Previously, I received a three-month supply. Now, I can only receive one month at a time,” Fiona says. “It adds another layer of stress because I now have to monitor my supplies constantly and follow up to make sure refills are ordered.”
A Message to Policymakers
Fiona hopes that policymakers understand the real-life impact of policy decisions on patients.
“I would like CMS and Congress to remember that they are dealing with real people—real lives—not statistics,” she says. “Changes like this can create unnecessary chaos and concern for patients with serious medical needs.”
She also worries that expanding the bundling policy to Medicaid patients in 2026 could increase challenges for even more individuals living with kidney disease.
“I hope patient advocacy will help return the system to being more patient-centered,” she says.
Staying Focused on the Future
Despite the challenges, Fiona remains focused on maintaining her health and staying transplant ready.
Through careful phosphorus management, ongoing education, and patient advocacy, she continues to demonstrate the determination and resilience shared by many people living with kidney disease.
Her message to fellow patients is clear: stay informed, stay engaged in your care, and never stop advocating for your health.
“I remain as healthy as I can on dialysis,” she says. “And I’m hopeful about what the future holds.”
