Dedicated and passionate volunteer and PKD advocate Luisa first shared her story with us in 2020, and again in 2022. Her latest update to her PKD journey tells the moving story of her quest for a double kidney and liver transplant.

My name is Luisa Miniaci-Di Leo, and I have polycystic kidney disease (PKD). I am deeply grateful to my organ donor, whose selfless gift allows me to share my story. As a resident of Dollard-des-Ormeaux, I’m fortunate to have the support of Mayor Alex Bottausci, as well as the mayors of 11 other boroughs who recognize September 4 as PKD Awareness Day and support the PKD Foundation.

A Daughter's Promise

Currently, I serve as the Montreal Chapter and Walk Coordinator for the PKD Foundation of Canada. I took on this role in spring 2014 after losing my father in December 2013. I promised him I would take action against PKD, and thanks to my hero donor, I continue to be an open book about the realities of living with this disease.

People often used to say, “But you look great,” because they had no idea what was happening inside my body. I use every social media platform to speak about this disease - how it’s taken loved ones from me, and how it affects me and my family every single day. Our first fundraiser, held on August 10, 2014 - the day after my dad’s birthday - was called “A Shoot for The End.”

I'm lucky to have a devoted husband (my cheerleader, rock, and knight in shining armour), who supports all my decisions - often before I’ve even made them. We have two sons who have stood by me through everything. Sadly, our youngest son has PKD. Without the constant support of my family, extended relatives, and amazing friends, I couldn’t do what I do. They’re always there at my conferences, they volunteer their time and talents at the “La Musique Guérit / Music Heals” benefit concert, and they invite friends and coworkers to join us at our annual Walk to END PKD.

The name “La Musique Guérit / Music Heals” came from my kids. Why? Because they’ve seen me crank up the stereo whenever I had a UTI or a cyst rupture. They know music is my therapy - it helps drown out the pain and takes my mind off living with PKD.

Unexpected Diagnosis

After two miscarriages, I was ten weeks pregnant in December 1986 when I was told I needed complete bed rest. Every morning, my husband packed a cooler full of snacks and drinks before heading to work - and it was all worth it. In July 1987, our son Andrew was born and made me a mom. We were over the moon.

I later experienced two more miscarriages and was close to giving up having more children. My OB/GYN, a high-risk specialist, recommended we undergo every possible test - MRI, CT scan, ultrasounds, infectious disease screenings, genetic testing, and countless blood tests. Before we received the results, I discovered I was pregnant again. That sixth pregnancy led to the birth of our son Christopher - he’s the one who has PKD.

After his birth, I was tired of being poked and prodded. I told the doctor, “That’s it - no more tests!” But now, I’m thankful she was persistent. Both Peter and I had to undergo many tests, and some people questioned why Peter needed testing too.

Medical testing can be long and stressful - you’re always wondering what the results will show. It took almost 16 months from the first blood draw to finally getting the diagnosis. Like many others, I was diagnosed with PKD while trying to find answers for something else - in my case, the cause of my miscarriages.

When it was time to hear all the results, we met with the team of specialists my OB/GYN had consulted. The geneticist asked which of my parents had polycystic kidney disease. I replied, “What’s that?”

We listened as they explained the disease, my symptoms (recurring UTIs, kidney infections, ruptured cysts, blood in my urine, and pain), what causes PKD, and what the future might look like.

The Family Connection

When they said the disease was “genetic” and “hereditary,” my world stopped. I was crushed. I had finally become a mother, only to discover I may have passed this illness on to my children. Genetics is rarely wrong, and I broke down.

We sat in the car crying for an hour, stunned by the news that our children had a 50% chance of inheriting PKD. Then we gathered the courage to tell my parents, who were babysitting. Holding our kids close, we tearfully told my dad the news and suggested he and my mom get ultrasounds.

Not long after, we learned that my dad did have PKD. I was shocked he hadn’t been diagnosed earlier, given his history of medical tests and being on blood pressure medication for a decade. He felt guilty for passing it on to me. When our son was diagnosed at 19, Dad felt even worse. I later discovered my aunt, cousin, and grandmother had PKD too.

Dad told me that in 1965, his mother was described as being “full of tumours” on her liver and kidneys. That’s when I realized she had PKD - it just wasn’t well understood back then.

A nephrologist once said, “If your grandmother lived to 61, then you’ll live to 61 too.” Dad got sick in the fall of 2013 at 84, and quickly fell into total organ failure, beginning with his kidneys.

My Advocacy Begins

While caring for him, I looked up the medications he was prescribed and came across the PKD Foundation of Canada online. I was thrilled - there was a whole foundation dedicated to our disease! But Dad, being the protective parent he was, told me to prioritize my health and my son’s. He said, “You’ve always been stubborn. Once you set your mind to something, nothing can stop you.”

Dad was laid to rest on December 21, 2013. Afterward, I started speaking publicly about PKD. On March 15, 2014, I met with Jeff Robertson, and later that year we hosted our first fundraiser, “A Shoot for The End.” I missed my dad terribly that day - I kept thinking about how we were always the first ones on the dance floor. He was the life of every party, always cracking jokes. I also felt his absence when I surpassed the age my grandmother lived to.

Physical Changes

PKD caused many changes in my body. I joked that the disease gave me an excuse to go shopping when my clothes no longer fit. Bra extenders saved me from feeling suffocated around the diaphragm and liver. Like many patients, I struggled with my reflection. My once-long, slender legs became swollen and veiny due to water retention.

I developed osteoarthritis, endured frequent UTIs and ruptured cysts, and even had pneumonia caused by my enlarged liver compressing my diaphragm. I was also diagnosed with hyperparathyroidism (HPT), which is common with chronic kidney disease. My bone specialist prescribed high-dose vitamin D, since my kidneys couldn’t produce the hormone needed to metabolize it.

My right kidney measured 29 cm by 20 cm. Thankfully, the left was smaller - 17 cm by 14 cm.

Polycystic Liver

PKD affected not only my kidneys but also my liver and gallbladder. My liver was abnormally large and had several cysts - the biggest the size of an orange. These cysts near the gallbladder’s portal vein caused acid reflux and digestive issues. In 2006, I underwent a liver cyst de-roofing procedure that drained seven kiwi-sized cysts.

When surgeons eventually removed my liver, they said it was stuck to my diaphragm and had to be taken out in pieces. I lived with constant pain. Even the simplest tasks - cutting my toenails, tying my shoes, crossing my legs - felt like my ribs were crushing my liver. I became a contortionist just to get dressed. Pain meds helped me sleep - but naps? This Italian-Canadian girl doesn’t nap!

Those days are behind me now, but I think constantly of other patients - especially my son - still living with PKD.

As I write this, I’m looking out at the beautiful garden oasis my husband built. It once made me sad because I couldn’t tend to it - but now, thanks to my donor, I can.

Keep Fighting

I gave up salt, vinegar chips, and cut back on protein, while increasing fruits and veggies. To stay mentally strong, I reach out to diverse communities in Montreal. Through friends’ connections, I’ve spoken with Argentinian, Chinese, Greek, Hindu, Italian, Portuguese, and Muslim community members. Many have joined our fundraisers after learning about PKD.

Even though I know I shouldn’t feel guilty, I still do. If I had stopped trying to have more children after Andrew - who doesn’t have PKD - I might not be here raising awareness today. We had Chris so Andy wouldn’t be alone. And now, Chris keeps me going. I fight for him and for a better future. I try to show him that having PKD doesn’t mean giving up on life. Yes, there are hard days - but there are also days when life is beautiful. The stigma and shame of having a disease? That’s long gone.

When people ask why I stay so busy, I tell them, “My clock ticks faster than yours.” In a strange way, PKD brought wonderful people into my life - people facing their own health battles who have supported me every step of the way. As Helen Keller said, “Alone we can do so little; together we can do so much.”

Health Crisis

In October 2022, two large cysts ruptured on my left kidney. Fellow PKD patients encouraged me to write down my story. They had been through similar experiences and wanted me to help others understand what we endure.

Every time this disease sends you to the hospital, it tries to take control. But the key is not letting it. The pain from those two orange-sized ruptured cysts was beyond anything I’ve ever felt. On October 23, I bent down to grab laundry, and suddenly it felt like someone stabbed me in the side and twisted the knife. I collapsed in agony.

My husband and son Chris carried me to the car. At the hospital, my blood pressure was high and I was crying uncontrollably. The triage nurse didn’t know what PKD was, but once my husband explained, she alerted the doctor immediately.

My temperature started climbing. Blood work showed a dangerously high creatinine level (250). I couldn’t sit upright and was leaning to one side in pain. They gave me opioids - first Supeudol, which I couldn’t keep down, then Dilaudid. I needed 1g every four hours by day, and 0.5g every two hours overnight.

My already overcrowded organs were now dealing with bleeding cysts and clots. It was brutal. But the hospital staff were incredibly thorough - CT scans, ultrasounds, X-rays confirmed it wasn’t kidney stones.

Soon after, I became hyper and anxious. My trusted nephrologist, Dr. Alam, saw a new side of me. I kept begging to have both kidneys removed. My husband told Dr. Alam, who was attending a pain management conference, that he should have brought the entire group to witness what cyst rupture pain looks like in real life.

I wasn’t myself. I couldn’t sleep. When the meds wore off - it was torture. I begged, “What do I have to do to get them out?” The nurses’ calming voices kept me sane.

Even 11 days later, I couldn’t sleep on my sides. Doctors said it could take 4–6 weeks to feel somewhat normal again. I was stunned by how much pain a ruptured cyst could cause.

Further Developments

In March 2023, after enjoying some time in the sun, I developed severe itchiness. I ended up in the emergency room due to something called biliary cholangitis caused by a blockage.

Guess what caused the blockage? Liver cysts. It felt like pins and needles - and fire - between each finger and toe. I wanted to cut out the webbing between them because the sensation was unbearable. Everything was bright red, and I couldn’t find relief from the burning and itching that took over my whole body.

A biliary drain and a bile bag had to be inserted by an interventional radiologist and changed every four weeks instead of six, for fear of further infection and liver scarring.

On October 2, 2023 - my birthday - I was back in the emergency room. Three doctors came into my room and told me I needed a liver transplant. I refused to believe it, but they explained that only half of my liver was still functioning, and it was getting worse every day.

Listed

I was officially placed on the transplant list in January 2024. Things deteriorated quickly. I kept losing weight because I could barely eat; there was no space inside for food. I survived on Boost, Ensure, creamy foods (basically baby food), while dealing with severe acid reflux, vomiting, a metallic taste in my mouth, dizziness, lightheadedness, anemia, declining kidney function, and eventually, no urine output.

Then, on August 29 at 2:00 PM, I got THE MIRACLE CALL! I screamed to my husband and my son Chris that I needed to pack a bag - we had to get to the hospital because a donor had been found. I called my son Andrew in Barcelona and told both boys to continue being good and to take care of their dad. Deep down, I thought I might not survive. I told them that if I didn’t make it, any healthy organs or tissues not affected by PKD should be donated.

We arrived at the hospital at 9:30 PM, and they wheeled me into the operating room at 11:30 PM. Surgery began at midnight and lasted until 8:30 AM. There were several complications.

I lost five litres of blood, and at one point, they left me open in case the doctors needed to return for a fifth intervention. I was placed in an induced coma in the ICU for five days, then spent another 28 days in a hospital room. When I finally woke up, my husband, Christopher, and some of my husband’s family members were there - although to this day, I still have no memory of seeing them.

I had the best doctors and the most compassionate nurses! When my husband showed me the pictures of all the machines I was hooked up to - the breathing tube, my arms black and blue from blood draws - I completely freaked out.

Before everything went downhill, I weighed 77 kilos. Just one week after the transplant, I weighed 49 kilos. I’ll let you do the math on how much weight I lost - and how large my liver must have been. At my first post-transplant check-up, they told me my “ugly” liver had been so stuck to my diaphragm that they had to remove it in pieces.

Angel Donor

All I can say is that I had an angel watching over me - and that angel welcomed my donor with open arms. Although I’m no longer suffering from the effects of PKD, I constantly think about the future for my son and my cousin.

I am so grateful to my donor’s family for honouring their loved one’s wishes. I’m grateful to be able to cook my family’s favourite meals again, to see them smile when I put the food on the table, to smell the flowers I’ve been given, to watch my tulips, hyacinths, crocuses, and daffodils bloom, to drive a car, to do the groceries, to see my family and friends - and to continue raising awareness for PKD and organ donation.

24 April 2025

Today, I participated in an Organ Donation Awareness Day event and shared my story of how PKD led to organ failure in both my liver and kidneys. I answered all kinds of questions, met live donors, and spoke with many transplant recipients. This event was held at the MUHC Glen Site, Royal Victoria Hospital. It was truly wonderful to see many of the doctors and nurses who took care of me.

As I continue to heal from the liver and kidney transplant that took place on August 30, 2024, I am forever grateful to my selfless hero donor. Thanks to them, I get to hug my children, watch many more sunrises and sunsets, see the flowers in my garden, share my story with you, and live this life with my knight in shining armour - my husband - who always told me, "You must believe."

Every day, I think about my grandmother, who was diagnosed in the 1960s and passed away because no one knew about PKD back then.

I dedicate this to her.
Baci nonna. Luisa 💚

Advocacy

Photos taken April 24, 2025 at the MUHC Transplant Recipient Meet & Greet.

Fundraising

Photos taken April 25, 2025 at the Texas Hold'Em poker tournament, a third-party fundraising event for the PKD Foundation of Canada, hosted by the St. Brendan's Knights of Columbus, Montreal.

Delicious desserts sponsored by Délices Lafrenaie, who continue to stand alongside PKD patients because their family members live with the disease.

More

• Read Luisa's Voices of PKD Stories from 2020 and 2022.
• Get involved with Luisa in the 2025 Montreal Walk to END PKD!

Read All Stories