Nina Young first shared her story with us in November 2023. She was diagnosed with PKD at age 11, and at the time of her first Voices of PKD story, she was hoping and praying for a kidney transplant, after having been on dialysis for several years. We're thrilled to share this update to her PKD journey.

The Long Road

I was less than a month away from being on dialysis for eight years. The same number of years that my mom was on dialysis, before she passed away in 2006. She was only 45; I am now 43. Watching six out of nine of my family members succumb to this disease has been very difficult. Having a daughter who was diagnosed with PKD at age eight watch me go through this journey has hurt the most. I have witnessed her fear - not only the fear of losing me, but also her fears for her own future. I've intimately known her thoughts, for they were once mine.

For the last eight years, I have coped in different ways. I involved myself in my church, learned as much as I could about PKD, and joined the work of the PKD Foundation of Canada as a volunteer and fundraiser. There were many hardships physically, emotionally, and mentally. My faith in God is what pulled me through: this whisper deep within me that constantly reassured me that "this too shall pass, and is only for a little while." Through the support of all the wonderful people in my life, including those at the PKD Foundation of Canada, I just kept moving forward.

And I continued to remind myself, that each day I kept on fighting was another day I got to be with my daughter, and do the Good Lord's work.

Focusing on Life

A year-and-a-half ago, the vascular surgeon and several radiologists confirmed that I had exhausted all but one dialysis access sites on my body. The only one left was the right femoral line, and these sites often don't tend to last more than a year. This time last year, I was getting my affairs in order and planning what songs I wanted at my funeral. I had made my amends, and prepared to soon be with my Lord. I wasn't giving up though - just accepting the truth. However, I also continued doing the intense transplant workup with my Transplant Coordinator in Orillia, and at Toronto General Hospital.

Although my body was broken, I figured I might as well keep trying. Battling several mental health issues during the workup, as well as seizures, halted the progress. Several months later, with things finally somewhat under control, and the support of the doctors and nurses at the renal centre, I made my way down to Toronto General Hospital to discuss what was next.

The Transplant Coordinator told me that I had the perfect blood type for finding an easy donor match, and because I had been so long on dialysis, it gave me extra points on the transplant list. It also helped that I had wonderful letters from my nephrology team and other specialists, expressing their concerns about my dialysis access-site availability. They predicted that it wouldn't be long before I was matched with a deceased donor, because of the urgency.

The doctor also explained the risks that come with such a big surgery, such as blood clots (because of my mechanical heart valve), stroke, heart attacks, or more seizures. And they explained that the recovery would be long, there would be pain, and the possibility of still needing dialysis for a period of time while the transplanted kidney started working. And of course there was always the risk of transplant rejection.

Although this was all very scary, I didn't have to think hard to know my answer. I wanted to live, so I would keep fighting and focus on the best possible outcome, which was a transplant. Life is really too short to worry about the "what-ifs."

Finally Listed!

I was finally listed for a deceased donor kidney on March 14th 2024 - World Kidney Day. That day I left the office in shock. I couldn't believe that a transplant might actually happen. I went home, packed my bags, and was ready if the call came. Almost two weeks later I got that call. However, on my way to the hospital I received another call, explaining that, due to complications with the diseased donor's kidney, it was no longer viable for transplant.

I was torn up and sad, but then said to myself, "Wait a minute, I got a call!" I had waited and dreamed of that call for so long; I had wondered what it would be like. How would I react? Would I be scared, or in shock? How would I feel about receiving a deceased person's kidney? I now knew what to expect, and how I would cope.

I also realized I needed to be even more prepared. I thought of that first call as a "test run," to see just how fast my daughter and I could be ready.

I packed loose-fitting p.j.'s, a water bottle, head phones, phone charger, a book to read, anti-slip slippers, toothbrush and toothpaste, body wash, shampoo, a change of clothing, important telephone numbers, my list of meds, undergarments, etc.

Another Chance

Two-and-a-half weeks later, I received the second call. They told me I was the "backup," which meant that there was someone ahead of me for that kidney. But if something happened and the kidney wasn't suitable for the primary recipient, then it would go to me. I went to Toronto and began the testing, and then the next morning the nephrology team told me that I was not the backup anymore; I was now the primary!

I felt sadness for the person who wouldn't receive the kidney after all, and I prayed that their time would come soon. I also went through a period of grief for the donor and their family. I was humbled that they chose to save lives through donating their loved one's organs - to save my life without even knowing me.

The operation began just after midnight, and the kidney was successfully transplanted into me, and began working immediately. Do you know what they call urine at the transplant centre? "Liquid Gold!" I was so overwhelmed to see it after so long on dialysis.

Things felt surreal; not only did I get put on the transplant list on National Kidney Day, March 14th, but I received my new in kidney in April, when Organ and Tissue Donation Week is recognized. I felt like all the stars had finally aligned, and felt so proud to have been given the gift of life at such a time.

It's now been almost four months since my transplant. I still wake up every day feeling that I'm supposed to be going to dialysis. I actually had separation anxiety from not needing dialysis anymore!

The recovery has been hard, but worth every minute, and the Transplant Centre has been so amazing and supportive. The first month was hard, with midline staples and a stent, and multiple infections, but I wouldn't trade it for anything.

Giving Back

With this newfound life, I plan on serving my God - dedicating my future to raising even more awareness for PKD and organ and tissue donation, participating in the Walk to END PKD, joining the Transplant Ambassador Program (TAP), and living life to the fullest.

This part of my journey has been won, for now. However there is still so much work to be done. I will continue to push through the barriers, and do what I can to make even a little bit of a difference, and race toward the finish line - which is a cure!

Together We Can, Together We Will, Together We Will Conquer!

I will be participating in the Walk to END PKD in Toronto on Sept 29th 2024, to raise awareness and funds to support critical research to find a cure! Please visit my page at endPKD.ca/NinaWalks and make a donation toward the finish line!

Shining a Light

The PKD Foundation of Canada is so appreciative of Nina's service as a volunteer over the years, from founding the Corner Brook Chapter and spearheading PKD awareness and fundraising efforts in Newfoundland, to continuing, along with her family, to spread awareness about polycystic kidney disease and organ transplant in her current home in the Orillia, Ontario area.

If you're interested in volunteering as a PKD ambassador too, click here to start the process!

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