“So, the doctor has told you that you’ll need a kidney transplant.”
The young resident was so nonchalant in her statement, her smile so kind, that I simply didn’t know how to react.
“Uh, no. He didn’t. You’re the first person to mention this.”
Her smile faded. She looked at me, looked back at the computer screen, and said, “I’ll go get the doctor.”
The resident stood up, walked past me, and left the examining room.
As I sat there staring at the computer, trying to make sense of the graphs in front of me, I tried to absorb the words I had just heard. “You’ll need a kidney transplant.”
It all seemed surreal.
In 1993, when I was pregnant with my first child, while undergoing a routine ultrasound, the technician said, “Oh my, you have cysts in your kidneys!” There were about 10 tiny cysts in total.
No one seemed too concerned about it.
In 1998, when my daughter had a urinary tract infection (rather rare for a child of four), I happened to mention to the doctor that I had cysts in my kidneys. Suddenly there was interest. My daughter was sent for an ultrasound and — lo and behold — they found cysts in her kidneys. She then became a patient of the Nephrology Clinic at the Children’s Hospital. I was then referred to a nephrologist at the Royal Victoria Hospital and was followed by her until her retirement.
In 2001, I was sent for genetic counselling and it was determined that my daughter and I both had PKD — polycystic kidney disease. In our case, it is Autosomal Dominant PKD, which means that I, as the parent, have passed it on to my daughter. There are two major peaks when symptoms are usually diagnosed; age 30 and age 60. I was 30 when they found those cysts.
In 2001, my youngest daughter, then only seventeen months old, was not tested. We were told to keep an eye on her as she aged and to be certain that she too would need to have an abdominal ultrasound. Thankfully, her recent abdominal ultrasound has not shown any cysts.
As it was explained to us in 2001, we had the “good kind” of PKD. It was not the kind that affected infants at birth, and we would be able to live a long life, and to basically, “carry on”. So we did.
Fast forward twenty plus years. There have been several operations over the decades, with a series of abdominal ultrasounds as part of the process. Each report from a radiologist had a comment that said, “…patient presents with numerous cysts in the kidneys consistent with polycystic kidney disease”.
No one seemed too concerned about it.
My GP announced his retirement in the spring of 2021 and I asked him for a series of tests so that I would have a baseline of results to bring with me to a new doctor.
June 2021: “The liver contains multiple cysts measuring up to 4 mm in size….Both kidneys are enlarged, the right measures 18 cm and the left measures 15 cm. Both contain multiple cortical cysts measuring up to 5 cm….Enlarged kidneys containing multiple cysts consistent in appearance with polycystic kidney disease.”
Suddenly, someone seemed concerned.
September 2021: I was sitting in my Nephrologist’s office. A brain MRI was needed (PKD can cause blood clots in the brain), another CT scan of my kidneys was needed. My doctor was calm, reassuring, and very thorough in explaining how the disease could progress. My high blood pressure (despite having lost forty pounds) was not due to stress but due to my kidney disease. I was put on medication. He told me that we would meet again after the tests were complete. I went home concerned, but relieved that I was now “in the system.”
The resident returned to the examining room with the doctor.
The good news was that the brain MRI showed no sign of any clots. The not so great news was that my kidneys were enlarged by 80%. That would explain the back pain that I had been experiencing. My kidneys were functioning at 40%. The growth of the cysts would never stop. And, yes, within eight to ten years, I would need a kidney transplant. Sure, dialysis might work for a while, but, ultimately, my kidneys would be a mass of cysts and would simply fail. Stop working.
We discussed a new drug that I could take that would slow down the production of the hormone that makes the cysts. Everything from that point on really seemed a blur. I filled in reams of paperwork, left his office with a booklet about the drug, and walked out of the hospital. I don’t remember driving home but I do recall collapsing on the kitchen floor when I gave my husband the news. I just sat there, leaning against the fridge and sobbed. I was scared, and I felt helpless. That was November 30, 2021.
The drug, I had been told, if not covered by our insurance, would need to be approved by the Quebec government’s medicare system or else we would have to pay $36,000 a year for it. Six months of back and forth with our group insurance, the drug company, and the RAMQ, and it was finally approved by the government. I started taking Jinarc in May 2022.
If you’ve ever wondered what it feels like to be thirsty all the time, just ask me. This medication has changed my lifestyle. It causes the patient to FEEL thirsty and causes one to drink copious amounts of water. I average 5 to 6 litres of water a day. I carry my water bottle everywhere. I measure what I consume. Ice water, tap water, hot water. And, yes, what goes in, must come out. I plan my outings very carefully.
Has my diet changed? Not really. There is a diet that is recommended by the Kidney Foundation of Canada but fortunately, I was already following it when given the seriousness of my condition in November. I eat a mostly vegetarian diet, I haven’t had alcohol in over twenty years, I don’t smoke, I don’t cook with salt, and I exercise regularly.
What has changed? My vision for the next stage of my life. I never imagined that at the young age of 68 or so, I would be looking for a kidney donor. I never imagined that I would be on dialysis. I never thought that I would be hooked up to a machine that would be filtering my blood. I thought that I had the “good kind” of kidney disease.
Here’s the thing. There is no good kind of kidney disease. “Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common life-threatening genetic diseases, affecting approximately 1 in 400 to 1 in 1,000 people.”
September 4 is #PKDAwarenessday.
Sign your donor card. Investigate living donor programs. Take the time to learn more about a disease that affects 66,000 Canadians. I am one of them. #endPKD