February 04, 2020

Montreal PKD Patients Visit Federal and Provincial Officials

"The Montreal Chapter is physically located in Dollard-Des-Ormeaux and started its 2020 awareness campaign early with a visit to DDO federal MP Sameer Zuberi and provincial national assembly representative Carlos J Leitao. Also participating in both meetings were several PKD patients from the Greater Montreal Area. Everyone was given time to talk about how PKD has changed their life and the emotional weight they bear. Mr. Leitao requested a meeting with Dr. Alam, Director of PKD Clinic at the MUHC Glen and Montreal General Hospital.  We each felt that these officials have a genuine concern for patients living with PKD and are confident we will have their continued support in our endeavors. We each felt renewed hope that things are going in the right direction.

Mr Iacono told both officials that his son was diagnosed during the last month of his wife’s pregnancy. His son is now 23 and is on blood pressure meds since birth. His son plays sports, but needs to keep in mind that any strong contact can rupture certain cysts, which has happened in the past. He thanked both officials for their continued support and creating awareness of PKD.

Laura Marra spoke about how her daughter took the news at 11 years old, how her daughter might have to curb her sports life, and being a girl might bring on the same complications as her. She wonders if the progression of PKD will be the same for her 22 year old and her 11 year old. She also spoke about how getting a specialist is long in the province and the lack of communication between GP and specialist. She spoke quite a bit about the mental health challenges faced by PKD patients because it is always the first thing on our minds. From the moment we get up and see our bodies in the mirror, the moment we try to pick something up we dropped, choose what to eat and how to prepare it, make adjustments to meds for other health issues because of PKD,  to the moment we go to bed and try to sleep- PKD is on our minds. She also said that for those who have children with PKD, the worries are tenfold. 

Yona Drori is a patient at the Montreal General. She talked about how she was shocked to hear she has “a kidney disease”. Her family doctor basically told her that he couldn’t talk much about it because he didn’t know much about PKD and suggested she see a nephrologist. Once she saw a nephrologist (6 months later) she was told, “well your kidneys are still ok now but you’ll get worse in your 50’s”. All the while not explaining fully the symptoms and not explaining it can be passed on to her kids. She mentioned that doctors need more education on this because some doctors just have the “clueless" look on their face when PKD is mentioned.

Denyse Bilodeau said she is at 11% kidney function and talked about how she is doing tests prior to starting dialysis. She also talked about the recent passing of her relative due to PKD. Denyse also mentioned that for those she lost a long time ago, doctors didn’t know what PKD was. She too emphasized the importance of awareness from doctors and the importance of keeping the lines of communication open.

I shared how PKD has changed my life and how this disease is affecting so many other organs/parts of my body. 

The nurse who joined us shared the perspective of patients who go through her office and are devastated when they learn they have PKD. These patients are only told something like "you have a kidney disease and you’ll be referred to a nephrologist once it gets worse”.  They then get to nephrologist when they are at stage 3 or 4 and are upset because they could have better managed the disease progression. She talked about PKD within family members and how they can have different symptoms. 

Both were very satisfying meetings which left each of us with great hopes that we are moving forward.

This is what I said at the end of meeting with Mr. Leitao: "Thanks to everyone’s help and support, we will move forward, we will move upward, and yes we will move onwards”!"

- Luisa Miniaci-Di Leo, Montreal Chapter & Walk Coordinator