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Sharon’s Story

"We can learn so much from each other."

I have polycystic kidney disease (PKD), which is an inherited kidney disease. As a result, I knew what to expect as other family members also have PKD. Even still, the diagnosis in my early 30’s was a shock. I will never forget the day I found out. One is never fully prepared. It is always someone else’s story until it becomes your story.

I guess I was lucky in the sense that for many years after being diagnosed I had no symptoms and just lived a very normal life. That was until my mid 40’s when I was diagnosed with high blood pressure. From there my health started to fail and my kidney function declined rapidly to the point that I had to start dialysis in my early 50’s. It’s now 2020 and I have been on dialysis for three years.

It was a shocking transition at first, but then I adjusted. I was fortunate to start on peritoneal dialysis (PD) which is not as well-known as hemodialysis. Peritoneal dialysis is different in that I had a catheter in my belly through which dialysis solutions were emptied and returned. The solutions in turn absorbed wastes and extra fluid from my body. I could easily hook up to my machine at night, at home, which freed up my days. I could also quickly pack up and head out to visit family in Alberta or BC. With PD you can pre-arrange to send some of your supplies ahead to your destination which was handy. But recently, after two and a half years on PD, I developed an infection. I had to switch to the hemodialysis clinic at the hospital for my dialysis treatments three days a week.

With both types of dialysis, I need to follow a schedule. This includes taking meds, keeping to a restricted diet and generally being aware of my body so I can keep on top of any symptoms, such as leg cramps, that need to be reported to my care team. Dialysis requires a lot of planning. If you let it, being sick can interfere with your quality of life. It can also play havoc with your mental health and depression can easily creep in. I am often tired, out of breath when I climb a flight of stairs, weak, not at all happy with ports and catheters on my body. I am constantly fighting many frustrations. I know I cannot live without my kidneys and at this point of end stage kidney failure, the struggle with the unknown and worry about my future is real. However, dialysis does not mean the end of life to me. I stay active and I have supports in place.

When I think of my support system, I really have to give a huge shout-out to the renal staff in Prince George. They are always so understanding, nonjudgemental and patient with me. When I see how much the staff care, how can I not put my best foot forward! Their guidance has made this process bearable.

This journey can feel very lonely at times but I am very close to my favourite sister (my only sister!). We can easily chit- chat as sisters do. Plus, I usually have at least one of my three children check in with me daily either through FaceTime or a phone call. I have some super-duper friends who check in with me or drop by. And, of course, husbands can be handy!

I have high antibodies, over 95%. That means I am a highly sensitized patient and could more easily reject a transplant and need a very specific match. Given this, I have been placed on the national transplant list. I could get a kidney next week or in the next 10 years, it is all about finding the right match.

Whenever this happens, I must be ready to pack up and leave my home, have a plan for my animals and my work, as I will need to travel to Vancouver for my transplant surgery and stay there for up to three months for post transplant care. I hope to be eligible to stay in one of the Kidney Foundation’s Kidney Suites because I need to pay for my stay in Vancouver while maintaining my living quarters here in Prince George.

Because I have an inherited kidney disease and a very small family, it makes the possibility of finding a match within my own family unlikely. So, I need to look outside my family, to my broader network. I have advertised on Facebook and my employer even put up a poster at the restaurant where I work to help me find a donor.

When COVID-19 hit, it was very scary. At the beginning, I worried a lot. I was paranoid because I knew I was at a higher risk and I surely did not want to get sick. I sanitized everything, stocked up on my emergency dialysis supplies and had an emergency plan in place. The isolation was hard and I could not see the people I was accustomed to seeing as much as I would have liked. It was hard to accept that some people just didn’t care and continued to do as they pleased. I felt very trapped and had lost a sense of control over my life. Now that things are opening up a bit and I can return to work, I am feeling better.

I am so grateful for the COVID-related information that BC Renal, the Prince George Renal Clinic and the Kidney Foundation have made available to patients through mail, phone, video and webinars. The information was critical to me and helped me put things into perspective and feel more in control. I found listening to the media reports difficult so having information that was customized for kidney patients was both beneficial and reassuring. I knew I needed to be cautious but not live my life with paranoia.

Staying active in and connected to the kidney community has been hugely important to me. It gives me energy and really helps me to stay positive.

I truly feel honoured to part of the BC Renal Patient Engagement network. Specifically, I am involved in the BC Renal PD Committee, where I am asked for my opinion on a number of different issues, participate in meetings and answer questionnaires. I have learned so much including the importance of taking an interest in my own care.

We are so lucky to have such committed and dedicated renal staff here in BC. They give truly excellent care for kidney patients across the province.

I strongly believe one should reach out to their local kidney care team, the Kidney Foundation or local Chapter for support. We can learn so much from each other. In addition, I would stress the importance of taking ownership over our own care. Help those who are taking care of you. And for families, please participate and be involved in this new lifestyle. The Kidney Foundation is here for all!