My Story

Diagnosis

When I was 15, I urinated blood at school. I went to the walk-in clinic because I didn’t have any associated pain.

By pure chance, the doctor on site had just returned from a conference on PKD and immediately recognized the possibility that I had this disease, and that the blood came from the rupture of one of the cysts. This was followed by an ultrasound that was without appeal: I had the disease. I was the first in my family to receive this diagnosis, but with ultrasounds to other members of my family, we determined that it came from my father’s side.

At the time, all it meant to me was that I now knew the cause of my occasional side pain, and that one day I might have a kidney transplant. My kidney function was normal at the time. The consequences were very distant for me.

At 19, I had infection in the cysts in my kidneys and had to be hospitalized for two months, but I never had any other consequences. My follow-up was done by a nephrologist at first (kidney doctor), then by my family doctor when my nephrologist retired. I had annual blood tests, but until I was 33, my doctor didn’t see a problem with them.

2019: 18 years after the first blood

In 2019, everything started to unravel. In the winter of 2019, I moved to another region to change jobs. In the summer of 2019, I started to be more and more nauseus. I saw a doctor in July, because I had started going home during the day to rest when I didn’t have an obligation with clients. October 2019, I received a call in the car: I was told that my kidney function was at 30%.

Initially, I honestly didn’t believe it. A year earlier my former doctor had told me that I was starting mild kidney failure, which starts around 90% and up to 60%.

In my car, when I told the doctor at the end of the phone that a year ago my kidney function was at 70%, you can imagine that she started to panic a little bit more! A 40% drop in kidney function in one year was way too much!

In my first follow-up with my new nephrologist, we realized that my kidney function figures had been falling by 7% per year since 2015, and that I was well on stage 4 out of 5 of renal failure (to learn more about the stages of renal failure, click here).

2020: the collapse

For everyone, 2020 is the year of the beginning of the pandemic. For me, it was also the year I started to really see my overall condition go down. By the spring of 2020, I was fit, even on fire, and was super performing at work. Big projects rested on my shoulders, I was happy and fulfilled. In the summer of 2020, however, the nausea that had inhabited me for a year now was almost always present and I was always tired. Worse than that, I had trouble concentrating and I didn’t operate with the same efficiency at all.

Exhausted, I went to see my doctor who took me off work. This was followed by a psychological follow-up where we checked if I was “just” having a burnout or if it was something else. After months of testing, all we found was my illness. There was nothing to do except rest while waiting for a transplant. At 34, I had to stop working until I received a kidney transplant.

Preparing for a future pregnancy

But in the meantime, I could still work on the baby project! Almost at the same time as the beginning of the sick leave, the fertility clinic called me to make an appointment. The plan was to do what wecould at that time to facilitate a pregnancy after the transplant.

To do this, we had to overstimulate my ovaries in order to collect as many healthy eggs as possible. Then we had to freeze them until after the kidney transplant.

After the kidney transplant, we will have to fertilize the eggs, and send them to a laboratory in the United States to remove those who have my disease – so that I do not pass it on to our future children. I can’t protect them from everything, but I can prevent PKD from continuing to spread in my family. Since PKD is hereditary, we would naturally have a 50% chance of producing a child without PKD, and a 50% chance that our child would inherit it.

In 2020, this whole process was not free, and the government refused to make an exception for me, as they do with people who will have chemotherapy and cannot be sure they can have children later. Yet, let’s agree that at the age when I will finally receive a kidney, the chances of me becoming a mother naturally are very slim. In addition, by wishing to prevent PKD for our children, we will save significant costs to the health system, by reducing the chances that this child will need care early in life.

Facebook blog: A Kidney for Judith

In October 2020, when we started the fertility process and people wanted to contribute to the project, I decided that I had to find a way to keep them informed about the process. This is how the facebook blog A Kidney for Judith was born. Initially, it was called Healthy Test Tube Baby, in reference to the fertility process, but when the egg retrieval was complete, the next step in starting a family was to find me a kidney.

In Quebec, we expect about two and a half years of wait for a transplant with a cadaveric donor (someone who dies and has signed his health insurance card). For a living donor, we are talking about around 7 to 13 months. I decided to be proactive and transform the focus of the blog to become the basis of my search for a living donor. By sharing my story, maybe I could find someone who would be willing to give me a kidney! My story was shared hundreds of times, I even went on the radio, and I received 8 offers to give me a kidney. Unfortunately, none of these offers were successful.

My Facebook page A kidney for Judith has been hacked and I can no longer change its name. So I created a new one, Judith Bélair-Kyle – PKD Warrior.

PKD Warrior

I want to inform people about my illness through my experience, but on a platform that is more accessible to people who have the disease and their loved ones. I also want to inform about diseases and symptoms related to PKD, through my experience and information from reliable sources.

I have a bachelor’s degree in psychology and a master’s degree in business administration, so I’m not a specialist in the disease. On the other hand, I comit to use reliable sources, check the information I publish and correct myself if I make mistakes.

If what I live can be useful for others, why not share!