My name is Karen, and this story is about my journey with polycystic kidney disease (PKD). I was diagnosed at the age of 18. I knew it was a condition that not only threatened my own health, but also had the potential to be passed on to my children. This disease has been in my family for generations. My father had a kidney transplant at 55 years old, so I knew more-or-less what to expect down the road. Despite this, I embraced life and experienced the joy of motherhood twice without any complications. One of my children inherited PKD, a stark reminder of the disease's relentless nature.

Over the years, my journey with PKD was marked by numerous challenges. I was hospitalized twice due to infected cysts—a painful and dangerous complication of the disease. These hospitalizations and health issues I faced, as well as countless other infections and battles with diverticulitis (another gift from PKD). 

The turning point in my journey came in 2019 when my nephrologist plotted the course of my renal decline. The prognosis was stark; kidney failure was predicted for April or May of 2020. This news brought the reality of my condition into sharp focus, I needed to start considering my options. My nephrologist suggested an appointment with a vascular surgeon to discuss creating a fistula in my arm, as PD (peritoneal dialysis) was not an option for me because of the size of my kidneys.

2020: Kidney failure, dialysis

In 2020, I faced the stark reality of kidney failure. I was exhausted all the time, struggling to walk upstairs and in a total brain fog. In early January, I underwent surgery to create a fistula in preparation for dialysis—a procedure essential for my survival in the face of impending kidney failure. This fistula, a crucial lifeline, required months to mature, setting the stage for the challenges that lay ahead.

This phase of my journey was marked by the stark reality of my condition, the rigorous preparation for what lay ahead, and the unwavering support of my family and my dialysis team.

In the months that followed, my family and I embarked on a training course for home hemodialysis at the Oakville Trafalgar Hospital dialysis center. This three-month course was not just a learning journey, but a testament to our collective strength and determination to maintain a semblance of normalcy amidst the upheaval. I thank this wonderful team of dedicated nurses who supported my decision to self-cannulate—a process both daunting and empowering. They understood my desire to take control of my treatment. It was terrifying at first… but I learned to feel my way towards setting the needles in that sweet spot. My husband Dario's unwavering support during each session was a source of comfort and strength. He has been my rock through all of this, and was there for almost every session.

By June, the dialysis machine, humorously christened "Eric" after a vampire character from the "True Blood" series, became a fixture in my home. It served as a constant reminder of my new reality, but also of my resilience and capacity to find humour in the face of hardship. This was a very stressful time.

It was only upon starting dialysis that I was officially added to the transplant list, a significant milestone that brought me one step closer to the possibility of a life beyond the constraints of dialysis. The discussions around transplant options—choosing between a deceased or living donor—opened up a new chapter of both hope and anxiety. The rigorous testing process followed, from blood tests that confirmed my O+ blood type, making the donor search more challenging, to scans and heart tests.

The conclusion of these tests brought a mix of news; while I was deemed a candidate for a transplant, the necessity of removing one kidney and concerns around diverticulitis added another layer of complexity to my situation. This phase of my journey was marked by the stark reality of my condition, the rigorous preparation for what lay ahead, and the unwavering support of my family and my dialysis team. 

2021: Nephrectomy and heart attack

My journey took an unexpected and harrowing turn in March. The surgery I underwent wasn't just a standard procedure; it involved two surgeons, and was far more complex than I had anticipated. One surgeon was tasked with the nephrectomy (removing one of my kidneys—a massive organ that weighed 8 pounds, a representation of the toll PKD had taken on my body). The other surgeon removed 12 inches of my sigmoid colon, a procedure necessitated by the complications of diverticulitis, another challenging aspect of my medical journey.

The emotional toll of this development was immense. I had braced myself for the challenges of surgery and the subsequent recovery, but the heart attack and its consequences were a blow I hadn't anticipated. 

[Content warning: graphic image of PKD kidney]

Recovery from such extensive surgery was expected to be long and hard, but what I didn't anticipate was the additional challenge that lay ahead. Just two months into my recovery, I suffered a heart attack. This was a shocking and frightening setback, not only because of the immediate health implications, but also because of its impact on my journey toward a kidney transplant. The heart attack meant I was removed from the transplant list, and everything was put on hold for one year. This news was devastating; it felt like all the progress I had made was erased in an instant, and the glimmer of hope I had been clinging to dimmed significantly.

The emotional toll of this development was immense. I had braced myself for the challenges of surgery and the subsequent recovery, but the heart attack and its consequences were a blow I hadn't anticipated. Being removed from the transplant list felt like being told to pause my life, to put my hopes and plans on hold. The uncertainty of what lay ahead was daunting. 

Searching for a donor

In the face of my escalating health challenges, I found myself at a crossroads that demanded a departure from my inherent nature. Being a private person, I had always kept personal struggles close to my chest, sharing them with only a few. Yet, the dire need for a kidney donor compelled me to step outside my comfort zone, to reach out and share my story far and wide—a prospect that filled me with dread.

My advice to others in a similar situation now is clear: be open with your friends and acquaintances early on. Discuss your disease openly. It's a step I wish I had taken sooner, for it not only enlightens others about your condition, but also opens the door to unexpected support and understanding.

The task ahead was daunting. My family and I spent countless hours brainstorming, strategizing on how best to appeal for the help I so desperately needed. The decision was made to start with the most immediate circle of influence: contacting everyone we knew. This meant friends, family, acquaintances, and even casual connections, all of whom would be brought into the most personal aspects of my life.

The very thought of this was overwhelming. I dreaded the vulnerability, the exposure of my frailties and fears to the world. Yet, this was a necessary step, a pivotal moment in my journey where the private struggle with my health became a public appeal for assistance. It was a challenging time.

In an effort to cast a wider net, my husband took a creative step and had decals made for our cars. These were not just any decals; they were a public declaration of our search, a call to action for those who saw them. It symbolized our determination and our willingness to try every possible avenue to find a donor. Again, we tried to add a bit of humour to our dire situation.

My daughter set up a website, kidney4karen.ca, a central hub where we could share my story, provide information on kidney donation, and offer a way for potential donors to get in touch. This website became a beacon of hope. Once the website was live, we took the significant step of sending an email to everyone we knew, providing them with a link to the site. This email was more than just a request for help; it was an invitation to be part of a life-saving journey. Then, we waited. The waiting was perhaps the hardest part—a period of intense vulnerability, as we hoped that, among the recipients of our message, a hero would emerge—someone willing to give the gift of life.

The journey, filled with so much initial optimism, was becoming a testament to resilience in the face of continuous setbacks. It was a stark reminder of the complexities and challenges in finding a compatible donor, a journey marked by highs and lows, and a test of patience and perseverance.

As I embarked on this public journey, the reactions I received were a mixture of surprise and support. Many people were taken aback to learn about the struggles I had been facing with PKD, mainly because I had never spoken about it openly before. This experience taught me a valuable lesson about the power of vulnerability and the importance of sharing one's journey. My advice to others in a similar situation now is clear: be open with your friends and acquaintances early on. Discuss your disease openly. It's a step I wish I had taken sooner, for it not only enlightens others about your condition, but also opens the door to unexpected support and understanding.

The responses I received were heartening, with many people expressing their willingness to help by saying, “We've signed our donor cards, we’re here for you.” However, this process also revealed a significant gap in understanding regarding the concept of living donors. Many were unaware that it was even a possibility to donate a kidney while still alive—a misunderstanding that highlighted the need for more education on the topic.

My family, ever willing to help, found themselves barred from donating due to various health concerns, ranging from melanomas to blood pressure and heart issues. About ten volunteers came forward, each one eager to give me a second chance at life, but tragically, all ten were ruled out. Each call that came in saying “I tried but I’m not a compatible donor,” or “I’ve discovered I have a health issue,” was heart-wrenching for both them and me. I hope they know how grateful I am that they even tried. With each rejection, my hope dwindled, replaced by a growing despair.

The journey, filled with so much initial optimism, was becoming a testament to resilience in the face of continuous setbacks. It was a stark reminder of the complexities and challenges in finding a compatible donor, a journey marked by highs and lows, and a test of patience and perseverance.

The search goes international

Then, a new possibility emerged from an unexpected quarter. My sister-in-law Dunia, living in Croatia, repeatedly inquired if we had found a local donor. Her willingness to help had been evident, but the feasibility of an international donor was unknown to us. When we learned that international donors were indeed accepted, Dunia didn't hesitate. She underwent the necessary tests in Croatia, had all the documents translated, and sent them over. The fact that she was an O+ increased my hopes, which had been dimming. They began to soar once again.

The journey, marked by ups and downs, had taken yet another turn, this time towards a hopeful horizon. Dunia's readiness to go through the process, despite the geographical distance and the logistical challenges, was a testament to the power of family bonds and the lengths to which they would go to support one another. Her action not only reignited my hope, but also underscored the global community's potential to come together in times of need.

2022: Back on the list, and a false start

In April, just when I thought my journey couldn't get any more challenging, I faced another setback: painful hernia surgery. This unexpected turn of events meant that all further testing was put on hold and I was again removed from the list—a blow that felt particularly harsh, given the recent surge of hope I had experienced. The surgery was a stark reminder of the fragility of my situation, and the complexity of managing my health while awaiting a transplant.

Thankfully, by May I was able to be placed back on the transplant list, and the cycle of tests began anew. The rollercoaster of emotions continued, marked by moments of hope followed by daunting obstacles. Dunia, my sister-in-law from Croatia, once again became a central figure in this phase of my journey. She underwent another series of tests in Croatia, and just like before, all her documents and test results needed to be translated, adding layers of bureaucracy to an already tense situation.

June brought with it a wave of excitement as Dunia arrived, signaling a step forward in my quest for a transplant. The anticipation of moving closer to a potentially life-changing surgery was palpable. However, this feeling of optimism was short-lived. During the final antibodies test, we encountered a major hurdle, derailing our hopes. The results meant that despite Dunia's willingness to donate, her kidney was not a match for me.

This phase of my journey was characterized by a whirlwind of emotions, from the lows of surgical complications to the highs of family support and the potential for a donor match, only to be met with the stark reality of biological incompatibility.

The donor team, recognizing the emotional toll this news took on us both, introduced the concept of the Kidney Paired Donation (KPD) program as an alternative. This program offered a glimmer of hope, but also required a significant decision from Dunia. Faced with this new information, and the need for time to process the implications, Dunia declined to proceed immediately. After much thought and emotional deliberation, she decided to return home to Croatia in July to consider her options.

This phase of my journey was characterized by a whirlwind of emotions, from the lows of surgical complications to the highs of family support and the potential for a donor match, only to be met with the stark reality of biological incompatibility. The concept of the paired exchange program lingered in my mind as a possible path forward.

Kidney Paired Donation (KPD) program

After months of soul-searching and discussions with her family, Dunia made the courageous decision to move forward with the KPD program. It was a monumental step, one that rekindled hope. Our data was input into the paired-exchange database, and the waiting game began anew. Then, in October, a match was found for both of us. Dunia was contacted first to confirm her willingness to proceed. This moment was pivotal, marking a turning point in our journey.

The  process was shrouded in secrecy to protect the privacy of all donors involved, leaving me with very little information. This lack of insight was challenging, adding an element of mystery to an already emotionally charged process. Despite the uncertainties, the knowledge that a match had been found offered a thread of hope to cling to.

As the months ticked by, the wait felt endless. There was the constant possibility of delays or cancellations, a reminder of the many factors beyond our control. This period of waiting was a test of patience, hope, and resilience.

The transplants were scheduled for March 2023, introducing a new waiting period filled with its own set of anxieties and what-ifs. Time seemed to stretch indefinitely, each day laden with the possibility of change. With COVID still a prevalent threat in the community, the risk of illness affecting anyone in the donor chain was a constant concern. The fragility of our plans was palpable; any sickness or unforeseen complication could unravel the entire chain, derailing the transplants.

As the months ticked by, the wait felt endless. There was the constant possibility of delays or cancellations, a reminder of the many factors beyond our control. This period of waiting was a test of patience, hope, and resilience. The anticipation of the transplants, coupled with the fear of potential setbacks, underscored the complexity of navigating the transplant process, especially within the context of a global pandemic. Yet, through it all, the prospect of a successful transplant provided a focal point for my hopes.

2023: The paired exchange 

Dunia's second journey to Canada two weeks before the scheduled transplant marked the final countdown to a series of events we had long anticipated. Her arrival kicked off another round of tests, a necessary but nerve-wracking part of the process. The plan was for my surgery to take place first, with Dunia's surgery scheduled for two days later. My heart was heavy with concern for her. The thought of not being there to support Dunia post-surgery weighed on me deeply.

Then, an unexpected and frantic call from Dunia brought a jolt of anxiety: there was a problem with my donor.

The morning of my admission to the hospital is a blur in my memory. I felt numb, overwhelmed by a mix of emotions. The selflessness of Dunia and the anonymous individual donating to me was almost beyond my comprehension. Their willingness to undergo surgery for my sake was a testament to the extraordinary kindness and generosity that exists in the world. 

As I changed into the hospital gown and underwent the final pre-surgery tests, my mind was a whirlwind of thoughts and emotions. Then, an unexpected and frantic call from Dunia brought a jolt of anxiety: there was a problem with my donor. Despite this setback, the KPD team was adamant that Dunia should still proceed with her donation into the chain. This development was startling, adding another layer of complexity and uncertainty to an already tense situation.

The notion that the chain might continue despite issues with my direct donor was a source of new concerns. It underscored the intricate balance of the KPD system, where each donor and recipient is a crucial link in a chain of life-saving surgeries. 

Minutes after receiving the frantic call from Dunia, my hospital room suddenly filled with a team of about five doctors. The urgency in their demeanor prepared me for news I knew would be less than favourable. They quickly got to the point, explaining that a "technical problem" had arisen, making it impossible for my donor to proceed with the donation the next day as planned. While they assured me that the donor was still committed to donating at a later date, the immediate impact of this news was devastating.

The emotional toll of this announcement was profound. I remember a visceral, almost primal reaction to the news—a howl of despair that seemed to echo the turmoil inside me. In those moments, and the hours that followed, my family and I were enveloped in a sense of profound loss and frustration. The journey, already fraught with ups and downs, had taken another sharp turn into uncertainty, leaving us feeling utterly broken.

This moment marked another challenging chapter in my story, a reminder of the fragility of our plans and the myriad external factors beyond our control. Despite the assurances of future resolution, the pain of this delay was acute, a stark illustration of the emotional rollercoaster that defines the transplant journey.

As we struggled to process this setback, further details emerged that shed light on the cause of the cancellation. Contamination in the operating rooms in London/Kitchener had led to a widespread cancellation of surgeries, including that of my donor. This wasn't just a minor hiccup; it was a significant issue that impacted not just us but many others awaiting life-changing procedures. The doctors assured us that this was merely a postponement, a temporary delay in our journey toward transplantation. Yet, in the wake of such news, their assurances felt distant, a faint promise in the midst of our immediate despair.

This moment marked another challenging chapter in my story, a reminder of the fragility of our plans and the myriad external factors beyond our control. Despite the assurances of future resolution, the pain of this delay was acute, a stark illustration of the emotional rollercoaster that defines the transplant journey.

2023: Dunia donates into the void

 In the aftermath of the devastating news about my donor, the focus shifted to Dunia. The transplant team urgently appealed to her, emphasizing the importance of her decision not just for me but for the integrity of the entire donor chain. They needed to reassure her that despite the setback, I would eventually receive a kidney. Dunia was faced with a heart-wrenching dilemma: proceed with her donation, with no guarantee that I would receive a kidney in return, or hold back, and potentially disrupt the chain that could save multiple lives. That night was one of the longest and most difficult we had ever endured, filled with uncertainty and fear.

Dunia's selfless act and the emotional rollercoaster it induced were symbolic of the highs and lows that define the transplant journey.

By morning, after much contemplation and emotional turmoil, Dunia made a decision that can only be described as incredibly brave. She chose to donate her kidney "into the void," trusting in the process and the promise that the chain would eventually benefit me. This act of selflessness ensured the chain remained intact, and she went ahead with her surgery the next day, donating her kidney to a stranger. Her courage in the face of such uncertainty was a profound testament to her character and the depth of her commitment to helping others.

While Dunia was in surgery, I received unexpected and exhilarating news: my transplant had been rescheduled for the following week. This call was a glimmer of hope in what had been an overwhelmingly dark period. However, the tension did not ease immediately. Dunia's surgery, lasting about seven agonizing hours, was longer than expected, adding to the stress and worry. The calls with family during this time were fraught with emotion, as we all grappled with the complexity of our feelings—hope, fear, gratitude, and anxiety intermingling.

Dunia's selfless act and the emotional rollercoaster it induced were symbolic of the highs and lows that define the transplant journey. Her willingness to proceed, even in the face of immense personal and emotional risk, kept the chain intact, and opened the door for my surgery to be rescheduled. This period underscored the incredible sacrifices made by donors, and the intricate balance of hope and fear that recipients navigate in their wait for a lifesaving transplant.

Dunia's strength was remarkable. By the next day, she was up and walking, embodying an incredible spirit of recovery and resilience. Her three-day hospital stay was a testament to her fortitude, and once home, her recovery continued with remarkable speed.

Dunia is unequivocally “My Hero”. Words fall short of expressing the depth of my gratitude for her willingness to donate her kidney to a stranger, thereby enabling me to receive a kidney from another stranger a week later. The person who donated to me also became a hero in this intricate tapestry of lives, interconnected by generosity and a shared hope for health and healing. Their decision to do the right thing, even when they could have easily walked away after their loved one received a transplant, speaks volumes about the human capacity for kindness and altruism.

This experience has taught me that the system of kidney donation, particularly the paired exchange program, is indeed fragile, with each link in the chain vital to the success of the entire process. The willingness of individuals like Dunia and my anonymous donor to participate in this system, despite the risks and uncertainties, is a powerful reminder of the impact of selfless acts on the lives of others. It's a network sustained by the bravery and generosity of ordinary people who do extraordinary things, a testament to the strength of the human spirit and the bonds that connect us all.

2023: I get another chance

However, the moment I awoke in the recovery room, the news I received was nothing short of miraculous. My new kidney was functioning; it was already producing urine.

In the closing chapters of my harrowing journey, the long-awaited moment finally arrived at the end of March. After countless setbacks, moments of despair, and the overwhelming rollercoaster of emotions, I found myself in the operating room, poised to receive a kidney from a stranger. My emotions were a complex tapestry of hope and skepticism. The journey had taken its toll, and a part of me struggled to believe that this day would ever come. I was calm, perhaps unnervingly so, as if bracing for another disappointment.

However, the moment I awoke in the recovery room, the news I received was nothing short of miraculous. My new kidney was functioning; it was already producing urine. The medical team's assurances that everything was going well ignited a spark of hope that had dimmed in the long months of waiting and setbacks.

The very next morning, I took my first steps post-surgery. It was more than a physical act; it was a symbolic beginning of a new chapter in my life. This walk was a testament to the resilience of the human spirit, the incredible advances in medical science, and the profound impact of generosity. 

Many people asked me if I was pleased not to be doing dialysis anymore. It’s a strange thing… I never felt any animosity towards my dialysis machine. I saw it as a lifeline, and I cried the day they removed “Eric” from my home. Dialysis was three long years, but without it I wouldn’t be where I am today: a proud grandmother of 3 gorgeous little boys!

As Dunia and I approach the first anniversary of our surgeries, our gratitude towards the donors, the medical teams, and the KPD program is boundless. We are not only surviving but thriving, a testament to the strength found in unity and the incredible gift of organ donation. Our journey underscores the fragility of life, the complexity of the transplant system, and the unmatched value of human kindness.

Lessons learnt

To those embarking on a similar journey, I extend my deepest empathy, and sincerest wishes for strength and success. The road may be fraught with challenges, and there may be moments when all seems lost. Remember, though, that within the fragile system of paired exchange lies a profound strength—the strength of human connection and the transformative power of giving.

First and foremost among these lessons is the power of maintaining a positive attitude. This isn't to say that optimism can shield you from hardship, or magically alter the course of events. Rather, it's about the strength that comes from facing each day with hope. The path was incredibly challenging, marked by moments when maintaining any semblance of positivity felt like an insurmountable task. Yet, it was this very challenge that underscored the importance of hope. 

Reflecting on the journey, the role of the selfless donors stands out as the cornerstone of my story. Through the paired exchange program, a network of strangers connected by their willingness to give a part of themselves for others, I was granted a second chance at life. Dunia, my sister-in-law, emerged as the epitome of selflessness and courage, her decision to donate her kidney through the KPD program setting into motion the events that would ultimately lead to my transplant.

To those embarking on a similar journey, I extend my deepest empathy, and sincerest wishes for strength and success. The road may be fraught with challenges, and there may be moments when all seems lost. Remember, though, that within the fragile system of paired exchange lies a profound strength—the strength of human connection and the transformative power of giving.

Good luck on your journey! May it bring you to shores of health and happiness, buoyed by the kindness of strangers and the unwavering spirit of those who walk with you.

Please consider donating to the PKD Foundation of Canada. They provide an invaluable resource for information. Our family has utilized the option to donate used cars (via Donate a Car) to the foundation. We need to support our research professionals to help find a cure. 

Karen

March 2023

Karen was recently featured in our webinar on the topic of the Kidney Paired Donation program, where she shared her transplant story. You can watch the video of this event on YouTube, here.

 

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