Voices of PKD : Christina Meyer
My name is Christina Meyer and I was diagnosed with autosomal dominant polycystic kidney disease (ADPKD) when I was 18 years old. It was an accidental finding during an ultrasound, and it was then that it came to light that I had cysts on my kidneys. Realizing that it is a genetic disease, both my parents were tested and it was confirmed that my mother was already in the early stages of kidney decline. Neither my father nor my sister have the disease.
Today when I think back, I feel that it was really divine timing that they discovered I had PKD when they did, so that my mother was able to get the treatment she required.
I watched my mother for years, struggle with the disease as her kidneys slowly declined. When it came time to begin dialysis, my mother kept working full time, while having to be hooked up to a machine in the evenings three days a week. She was only able to do this for a year before she was forced to retire, as the dialysis was beginning to takes its toll. My mother was on dialysis for approximately twelve years. She had many complications and even lost a limb. Sadly, this disease took her life a week before her sixty-seventh birthday.
Chronic illness is very taxing on a family and for me it was a double whammy. Watching my mother go through all the trials of this disease, and then for it to finally take her life far too early, was a wakeup call for me to do all that I can to make sure that my own outcome is better.
At the age of forty, shortly after my mother’s passing, my own kidneys began to decline more rapidly. My nephrologist recommended a new drug, Jinarc, which is supposed to slow the progression of the disease. It came with a very long list of potential side effects, but I decided that if it had the possibility of slowing my kidney decline down, even a little bit, it was worth the try.
Although I am still on Jinarc, my kidney function has now dropped to the point where we have to begin looking at treatment options. Today, at the age of fifty years old, I am now at the beginning stages of that process. The treatment options consist of dialysis or transplantation from either a deceased or a living donor. I am pursuing a living donor, as I would like to avoid dialysis all together. There may be a possibility to avoid dialysis with a living kidney donation.
There is no cure for polycystic kidney disease, but an organ transplant may prolong and enhance a person’s quality of life. There is no limit to how many donors can be tested. The more options available for a new kidney, the better chance there is of finding the best possible match.
The thing about living organ donations is that you need donors. My husband and my sister have come forward as potential donors. However, there is always that possibility that neither my sister nor my husband are a match for me. In addition, they may discover some health problems of their own. Therefore, it is a good idea to, “not put all your eggs in one basket”, so to speak.
After listening to a webinar from the PKD Foundation of Canada titled, “Having Your Kidney Donor Find You”, I decided to take my story to social media. For me this was a huge step, as I was currently not on social media and wasn't sure anyone would actually hear my story.
I was amazed to say the least. The day after putting my story on Facebook, someone from the CBC London Morning Radio show contacted me, as she had come across my Facebook page and wanted to share my story. It didn’t end there. Good Morning Hamilton and Global News have both also shared my story. In addition to this great publicity, four more people have come forward as potential donors. I am truly in awe. Friends, family and people I have just met online have also come forward with prayers and support. Furthermore, people who have been donors and recipients alike have been contacting me and providing their stories and well wishes.
I felt it was important that I share my story not only for myself, but also for all the many families dealing with PKD and chronic kidney disease. I wanted to get the word out there that this disease doesn’t have to end with dialysis or a long wait for a kidney from a deceased individual. I also wanted to be an inspiration for my sixteen-year-old daughter, who will have to be tested herself in the near future, due to the genetic nature of this disease. I want her to know that if it turns out that she does carry the genetic disorder, that there is hope and possibilities.
As I begin down this path towards a kidney transplant, I do not walk with fear in my heart, but rather full of hope and possibility. I look to the future where I can hopefully give back and become a Transplant Ambassador myself through the Transplant Ambassador Program. I would love to share my experiences and help someone else who may be right where I am today. The future looks bright!
Thank you for reading my story. I would like to thank family and friends for their continued support, thoughts and prayers. I am so very thankful to those who have come forward and have begun the screening process for potential living donation.
For more information please visit https://www.lhsc.on.ca/multi-organ-transplant-program/living-donation, share my story and help me spread the word about kidney disease and living donor transplants. If you feel you may be a compatible donor and are considering a life-saving transplant process, please feel free to reach out to me at [email protected].