55 and still alive

Theresa Gray-Gunn is a polycystic kidney disease patient from Ontario, Canada. She shares her experiences as a kidney disease patient and how she has managed to stay positive with her kidney disease and her kidney transplant.

In 1968 my father passed away from a brain aneurysm. He was 28 and I was 2. My mother was brave enough to carry out his wishes and asked that his organs be donated. It was then that she learned he had Polycystic Kidney Disease. Since then, four of his five children have been diagnosed with PKD. I was diagnosed at age 11 after having several infections.

Life with PKD has not been easy.

From the pain of infections and ruptured cysts to the feeling of being alone with this disease, some days are a challenge. However, I have decided that raising awareness is the best way to cope and stay positive.

 

Ultrasound or genetic testing is the only way to diagnose PKD. My son has been given the preliminary all clear by ultrasound, but he will have to have another one in his late thirties or have genetic testing to confirm this diagnosis. My daughter has not been tested yet. I regret that I did not have them tested when they were younger. Perhaps if I had them tested, it would have relieved some of the burden for them. With more awareness, families will be able to make better decisions in this regard. Knowledge can guide the way we live with this disease.

I tried to live a healthy lifestyle, stayed active, did not smoke, and controlled my blood pressure. By my late twenties, I started blood pressure medications. The disease had a mind of its own and by age 46 my kidneys were failing. My younger sister did not have PKD and always said whoever needed a kidney first could have one. As my kidney failure progressed, my husband and sister started testing to be my donor.

At this point, the goal was a living donor transplant without starting dialysis. I was attending the Chronic Kidney Disease centre monthly, then bi-weekly and then weekly to ensure I would make it to transplant. I saw the nurse, dietician, social worker and nephrologist at these appointments. The number of times I had blood work done is countless. I also worked full time during this process which I believe helped me through it. By working and helping others, I was able to keep a positive mind set. I had some “poor me” days but ensured I did not stay there. I stayed active, walking 5km most days. I got up in the morning and told myself that I will continue to live, and I hoped for grandchildren to spoil one day.

My transplant team determined that my sister’s kidney was a great match, and we had our surgery on October 7, 2013. I will never underestimate what she did for me. It truly is the most selfless gift. I try every day to honour her gift. I was able to see my daughter get married on the beach in Mexico one year after transplant. I was able to run a 5km charity run, then a 10km run. At my 4-year post transplant mark, I ran a half marathon with my husband by my side – my constant cheerleader. 5 years post-transplant, we did the CN Tower Edge Walk. Our son is also married and gave us 4 beautiful grandchildren. I do love spoiling them and am so grateful for this opportunity.

This past year has been challenging. Living through a pandemic with suppressed immunity is scary to say the least. I am secluded at home with my husband. I continue to check experiences off my “to do list” when possible. In 2020 I jumped out of an airplane to celebrate a dear friend’s five-year cancer free anniversary.

I just turned 55 and I like to say “55 and STILL ALIVE.” I am enjoying life and am hopeful that my grandchildren will be spared from this disease but I do know they can still live a full and wonderful life. I try to raise as much awareness as possible so they will never feel alone.

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