How a routine ultrasound led to a woman’s kidney transplant

Everything came together perfectly. I was a career-driven 27-year-old celebrating one year of marriage with my husband when we found out we were having our first child. Eager to bring a healthy baby into our world, I kept up with my routine check-ups with my obstetrician. I had no trouble conceiving and felt happy and healthy. Back then, unbeknownst to me, it was on one of those appointments that I discovered I had an underlying medical condition that would completely turn my world upside down.

An unwelcome surprise

When my doctor did my first ultrasound during my pregnancy, she found extra growth in my organs. From the exam table, my heart sank as the monitor showed a mass-like object filled with what appeared to be black liquid. I was told that fluid filled cysts were growing in both of my kidneys and that there was nothing that could be done medically other than requiring a transplant later. But in my case, since my cysts were still small, they wouldn’t affect my pregnancy – which was my biggest concern.

“My heart sank when the monitor showed a mass-like object.”

As the room fell silent as my doctor gave my husband and I a chance to digest the news, my thoughts raced with questions filling every corner of my mind. Remember, I was only 27 at the time – newly married and feeling healthy. I was only concerned with having the best possible birth, taking care of my family and growing professionally.

The diagnosis

I was officially diagnosed with Autosomal Dominant Polycystic Kidney Disease (ADPKD). This rare genetic condition causes cysts in the kidneys to gradually grow, which can lead to dialysis or a kidney transplant. In fact, it is the fourth leading cause of kidney failure, according to the PKD Foundation, and more than 50% of people with the condition will develop kidney failure by the age of 50.

But I had no symptoms. I did not choose to seek a second opinion and continue researching this new disease. Instead, I ignored my ADPKD diagnosis and hoped never to look back—until I got sick.

A family affair

The news of my ADPKD diagnosis was unexpected and I was unaware that I could potentially pass this gene on to my daughter and future children. In fact, according to the PKD Foundation, it’s one of the most life-threatening genetic disorders. And research shows that there is a 50% chance that a child will inherit ADPKD from a parent.

This disease, which had essentially been dormant in my body for years, was not only interfering with my life but affecting my growing family as well. If only I had known earlier about the risk of disease progression and taken action, such as routine appointments with my care team, maybe things would be different.

Instead, I felt like I was being hit with a ton of bricks with information overload and had no real guidance to manage my condition. I was still asymptomatic so I decided to use this time to focus on my family and career and put my health on the side. Like many mothers, my priority was my family and my job. I was very centered on others and didn’t focus on this diagnosis.

When deadlines became difficult to meet, I attempted to postpone them until they became too difficult to meet or make. My doctors at the time didn’t tell me my options, so I continued to prioritize my health until I started getting sick.

A little bit too late

Over the years, my kidney function continued to deteriorate. Healthcare professionals refer to an estimated glomerular filtration rate (eGFR), a test that measures kidney function (how well the kidneys filter waste in the body). A “normal” eGFR number is above 90, and any number below that can indicate rapidly progressing kidney disease. I was only referred to a kidney specialist when my eGFR reached 29.

This delay in proper care prevented my chances of developing a real plan of action to maintain my kidney function. In fact, assessing your kidney size early can help predict disease progression to make more informed decisions for the future.

A few years later I was a mother of three and working full time. Through my job in the pharmaceutical industry, I met a nephrologist that I trusted. However, I kept my kidney health on the back burner and never prioritized appointments with him.

During that time I endured three hospital visits as the cysts grew and enlarged both of my kidneys. In 2017, I was admitted with anemia and end-stage kidney disease or renal failure and had to weigh my options. This included starting dialysis and finding a living donor for a kidney transplant.

Waiting for the call

Under the guidance of my nephrologist, I opted for peritoneal dialysis (PD). PD is a treatment method that removes excess fluids and toxins, corrects electrolyte imbalances, and is the ideal type of renal replacement therapy for patients considering a transplant. My abdominal catheter was inserted on April 29, 2019 to drain the excess fluid and about a month later I started Parkinson’s disease.

In November 2020, over a year later, my phone rang at 2am with the message that a transplant was available. At 8:30 am, through the blessing of an angel, I received a new, healthy kidney – a second chance at life.

“I got a new, healthy kidney – a second chance at life.”

Now post transplant I am closely monitored by my transplant team and have to take multiple medications to make sure my kidney chart doesn’t shed and vitamins to make sure my body has what it needs to stay healthy. This is a chronic genetic condition and both of my kidneys – along with my children’s kidneys due to their genetic nature – will continue to be monitored for life.

I also now live with type 2 diabetes and work closely with an endocrinologist and a nutritionist to manage my blood sugar levels. This is especially important as maintaining high blood sugar levels can damage my new kidney and lead to kidney failure. It’s a full-time job that requires consultation with a team of experienced doctors and nurses, and I’m fortunate to have an incredible team behind me.

To pay in advance

While accepting an ADPKD diagnosis can be an overwhelming concept, there are a variety of helpful resources patients can use to navigate their journey. ADPKDQuestions.com is a website that provides facts about ADPKD, tips for conversation starters when discussing ADPKD with a doctor or family member, and links to other organizations.

Now, 35 years after being first diagnosed and endowed with a healthy kidney, I am passionate about educating others, especially knowing that this disease will bring many challenges. My family and I are also deeply committed to removing the barriers that allow us to care for people of color with kidney disease.

I would encourage anyone who is in a similar situation – especially if there is a history of kidney disease in your family – to take action early. Simply asking your doctor to evaluate your kidneys can be a life-saving decision for you or a loved one.

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