Voices of PKD Blog
November 23, 2023

Nina Young, Orillia ON | Voices of PKD

Nina_1.pngMy name is Nina Young. I’m currently living in Orillia, Ontario, but was born in Corner Brook, Newfoundland. If I could describe myself in 3 words, they would be “motivated, a fighter and loving.”

I was diagnosed with PKD at age 11, and I’m now 42. I've lost 6 out of 9 of my family members to this disease, including my mom at age 45. My reaction to my diagnosis was fear, uncertainty, and determination.

I was afraid of a disease that at that time very little was known about. There were no support groups for children my age, so I didn't know how I should feel. My mom couldn't tell me much either, because she herself did not have the answers, and was terrified of an unknown future. But she comforted me, and taught me that no matter what happened, I should just keep fighting.

So that's what I did. I kept fighting through an uncertain future right beside her, until she passed in 2006. She went through eight years of dialysis, and so much trauma I can't even begin to express. But I remember her love for life, her faith in God, and her will to live another day.

I would like to think that she passed on her passion to me, as I continue fighting into my eighth year of dialysis, too. I was determined not to let PKD define who I was as a person, and that is what I have always tried to lead with, on my journey.

Nina_6.pngMy kidneys started to decline when I was about 21. Each doctor's appointment that I attended reminded me of the ever-increasing slope I was on, and how I felt my life slowly disappearing.

I started dialysis at the age of 34, and began to prepare for the transplant list while I was still living in Newfoundland. I was on the list for three years, but then tragically found myself in the ICU for nine days, holding on for dear life due to five major bleeds in my lower bowels, the cause of which was unknown.

Then, one month later, I ended up in Halifax, NS, to undergo a double nephrectomy [the removal of both kidneys]. My kidneys had caused me such pain, and I had constant infections because of the cysts bursting. They called it the domino effect. One cyst would burst, and then many more would follow. 

My kidneys were huge. One was 12 pounds, and the other was 14 pounds. Even to this day, I do not regret the decision to have them removed.

Unfortunately, because of the many illnesses that I battled with over the years, such as heart valve issues, digestive, and stomach problems, I am only now almost ready to go on the transplant list in Ontario.

Nina_5.pngWhile I was waiting for things to improve, I really wanted to help other patients who were struggling with PKD. So when I was still living in Corner Brook, I contacted the PKD Foundation of Canada, which I was already involved with, and together we set up the first chapter in Newfoundland.

We held monthly meetings, and did fundraisers at the hospital such as bake sales, barbecues, auctions, and raffles. We also distributed information about PKD.

The City of Corner Brook declared September 4th as PKD Awareness Day, and they now do a yearly flag-raising there to commemorate it. Being part of this chapter helped me feel like I was fighting back, and I would recommend to other people that they get involved with the work of the PKD Foundation of Canada, and consider the possibility of opening up a chapter in their area. The satisfaction that you receive from helping others in similar situations is priceless. It helped me through my journey, and it can help you through yours as well.

Nina_3.pngIn 2019, I moved up here to Orillia, Ontario. Last year I was a part of the flag-raising ceremonies in nearby Barrie, and this year I wanted to continue my journey with the PKD Foundation of Canada, so I helped coordinate the City of Orillia’s recognition of PKD Awareness Day. The mayor signed a formal proclamation, and for a week starting on September 5th, the PKD Foundation of Canada’s flag flew proudly at the Opera House in downtown Orillia.

I was lucky enough to do a couple interviews for the media about PKD Awareness Day, and the importance of spreading the word about PKD. To be part of something so important has helped me in my journey. One day there will be a cure for PKD, but until then I will keep fighting.

(You can read Nina’s two interviews here, and here.)

The most challenging thing about my PKD diagnosis has been dialysis. It’s been seven years of many battles, stays in intensive care units, and almost dying.

Nina_2.pngI am currently doing hemodialysis three days a week, four hours each time. I'm lucky to live five minutes from the dialysis centre, so I don't have to travel far for treatments. I’m not currently employed because I'm on dialysis.

I’m usually able to sleep while I'm undergoing my dialysis treatment, and sometimes I'll read a good book. It helps to pass the time away.

I’m working towards getting on the transplant list with Toronto General Hospital. After about a year, the transplant coordinator at the hospital here in Orillia, and the transplant team at Toronto General Hospital have helped me with the testing needed to get on the transplant list for a cadaver kidney. I'm almost there.

Unfortunately, I am down to my last access site for dialysis, which is a femoral line in my left leg. The need for a new kidney is even greater now, so with faith in my heart, fingers crossed, perhaps in just a few months I will receive the gift of life.

My greatest hope for the future would be a cure for PKD, so that no more people will have to suffer like my daughter, mom, and the rest of my family. If not a cure, then I hope that they will find more treatments so that people like my daughter don’t have to suffer like I have.

Nina_4.pngOn days like PKD Awareness Day, or on the Walk to END PKD, I think about all my family, and other PKD warriors that didn't make it. I also think about the communities that have signed the proclamations to declare National PKD Awareness Day in their communities, including Orillia.

I look forward to the chance of being around to see new treatments available. I give thanks to the people who have sponsored the Walk to END PKD. They are the ones who are helping make a true difference.

I wish more people would be educated about this disease. It’s more common than they think. A lot of times, PKD sweeps through generations of families without remorse. However, there’s help out there, support groups, and so many research trials going on.

My faith in God is what has gotten me through all these years. If I hadn't experienced all these challenges, I would never have met some of the most amazing people. We’ve shared stories, laughed, cried, and given each other the strength to continue on.

God helped me realize just how precious life is, and I’m thankful for not just the good, but the bad as well. Having PKD has made me the person I am today. Here I am: still standing, still breathing, and still marching on.

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