Peritoneal dialysis training: Enabling me to live,travel,and thrive

Trudi's story

Polycystic kidney disease (PKD) has shaped my life in profound ways. Diagnosed at age 25, after losing both my mother and grandfather to this inherited illness, I have spent decades adapting to the challenges of chronic kidney disease. My journey has included severe fluid retention leading to morbid obesity, failed attempts at hemodialysis access, the transition to peritoneal dialysis (PD), and the unique experience of managing my treatment while living in a caravan and traveling around Australia. In September 2022, I received a life-changing kidney transplant. I share my story to highlight the importance of personalized care, resilience, and adaptability for those living with chronic kidney disease.

Early management and fluid retention

For the first two decades after my diagnosis, I focused on maintaining my kidney function. I managed my blood pressure, followed my doctor’s advice, and underwent regular monitoring. Despite my best efforts, my kidney function gradually declined. As my kidneys failed, I began to retain massive amounts of fluid. At my heaviest, I weighed 136 kg. Much of this weight was due to severe fluid retention, which made daily life extremely difficult and contributed to my classification as morbidly obese. Simple activities became exhausting, and the swelling was a constant reminder of my declining health.

Facing kidney failure

By 2011, my kidney function had dropped to the point where I needed kidney replacement therapy. Although I expected to have dialysis in my future, I only knew of hemodialysis, and hadn’t done any research on this, as I didn’t want to know or think about dialysis, as I was contemplating not having any treatment. I wanted to stick my head in the sand and hoped it would all go away. My mum's illness was cruel and horrible, and she passed away at the age of 36. In my mind, I was convinced I was going to die at the same age. Although I had good nephrology care, my mindset was very poor. I met a female patient one day while waiting to go to my nephrology clinic appointment, and we chatted. She had far more medical issues to deal with, and made me change my mindset to a more positive one. I had such good care from my nephrology team that I was working full-time, was a mum to one child, and was doing okay, all things considered.

My doctors and I initially tried to prepare for hemodialysis by creating an arteriovenous fistula. Unfortunately, the fistula failed due to poor vessel quality and thrombosis. After a failed revision, it became clear that hemodialysis would not be an option for me.

Transitioning to PD

With hemodialysis off the table, the nephrologist made a decision to put a catheter in my tummy for PD. A Tenckhoff catheter was placed, and I underwent thorough training to learn how to perform PD safely at home. I started training for PD at the renal unit, and although I was still very anxious and fearful, the team took me by the hand and led me through the training day after day, and welcomed my husband and son as my support team. Training included a meet and greet the week before the training commenced, and was for five consecutive days with the same nurse trainer each day. I was tested on my ability to connect myself to the machine by day 3, still with the watchful eye and encouragement from my trainer. By the last day, it seemed informal as I was chatting to my nurse and one of the other nurses, but they tested me, such as treading on the lines to make sure I was prepared for any obstacles, and to be able to navigate my way through problems. Having an in-depth manual and an on-call phone number for one of the renal nurses rostered on in case I had any problems was also very helpful. I found the training to be very clear, easy to understand, and felt supported all around.

My experience of being trained in PD was a positive one. I look back with fondness on the support of my family and how lucky I was to have had my nurse trainer and the renal unit support. I wouldn’t change anything about the experience. Even when we returned to our home city after some time of doing PD in our caravan and traveling, I felt that when I reconnected with the nephrologist and renal team, it was flawless and again a very supportive environment.

Living and dialyzing on the road

At the time I began PD, my home was a caravan, and I was traveling around Australia. This presented unique challenges. I had to learn how to maintain a sterile environment in a small, moving space. I worked closely with my healthcare team to develop protocols for storage, waste disposal, and infection prevention. Dialysis supplies were delivered to various locations along my route, and I stayed in touch with my care team through telehealth.

Despite the challenges, I experienced only minor issues, such as occasional exit-site irritation. I never had peritonitis, thanks to careful technique and vigilance. The PD also helped me manage my fluid retention, though my weight and swelling remained a significant challenge until my transplant. Overall, I was determined to maintain as much independence as possible, and PD offered me that flexibility.

Reflections and lessons learned

Adapting to life with PKD

Living with PKD has required constant adaptation. Losing my mother and grandfather to this disease was heartbreaking, but it also motivated me to take control of my own health journey. I have learned the importance of self-advocacy, education, and partnership with my healthcare providers.

Overcoming medical and logistical barriers

The failure of my fistula was a setback, but it forced me to consider alternatives that ultimately suited my lifestyle better. PD allowed me to travel, live independently, and maintain a sense of normalcy.

The importance of personalized care

Every patient's journey is unique. For me, the ability to tailor my treatment to fit my lifestyle has made all the difference. I encourage others facing chronic illness to work with their healthcare teams to find solutions that support not just survival, but quality of life.