Laura, Niagara Falls, ON
1. Tell us a little about yourself.
I am a 54 year old woman who was diagnosed with PKD at the age of 26. Since that time, I have led a full life with my husband and son. I work full-time as an associate professor at Brock University. I am active in sports that including horseback riding, skiing, cycling and tennis.
2. Can you talk about your diagnosis?
I was initially diagnosed when I visited the Health Center at the University of Ottawa. I was told that I had very high blood pressure and was asked if others in my family had kidney disease. My father had PKD, as did 3 of his four siblings, and thus I was not surprised by the diagnosis. I was given medication to manage my blood pressure and, aside from some complications when I was pregnant, I experienced few symptoms of the disease until the age of about 50. Knowing that my father and uncle died as a result of complications of PKD and that another uncle underwent two kidney transplants, I was aware of the seriousness of the disease. Knowing this, I adopted a healthy lifestyle that included exercise and healthy eating.
3. How long have you been receiving (treatment/in the PKD program) for?
I’ve been receiving treatment for PKD for 28 years. Until about 5 years ago, the treatment was primarily to manage my blood pressure. Over the last four years, however, I’ve experienced increased back/kidney discomfort, digestive issues, and increasing fatigue.
4. What do you think about the care that you received from Dr. Pei & his team?
The care I receive from Dr. Pei and his team is unparalleled. Dr. Pei cares about understanding and addressing the symptoms of PKD to help his patients, as is evidenced by his keen interest in my health each time I see him. His team are warm, caring, concerned and, at times, fun! Undergoing treatment can be daunting; however, Dr. Pei and his team’s professionalism and knowledge bring comfort. The appointments with Dr. Pei are always informative as I am made aware of new treatments. This leaves one feeling uplifted about the progress being made and the potential for new therapies that will benefit patients.
5. What has your experience in the research program been like?
I’ve been honoured to participate in the research studies provided by Dr. York Pei to his patients with PKD. Knowing the risks associated with PKD, being part of research studies that help to improve the diagnosis or treatment for PKD has meant a great deal to me. I am not the only member of my family to have PKD and thus my thoughts are with loved ones as I participate in research projects seeking to advance diagnosis and treatment of PKD.
6. What advice would you like to tell anyone who is thinking about joining the PKD program?
I have already recommended Dr. Pei and his team to others I meet who have PKD. The program enables one to receive treatment from leading edge researchers, to receive the best treatment possible, and to remain knowledgeable about new treatments or clinical trials. As a patient of Dr. Pei, one feels they are receiving the best possible ongoing care and they have access to the best diagnostic equipment available.
7. How do you feel now?
I’m optimistic about my future as a result of the treatment I receive from Dr. Pei and his team. While having PKD may seem daunting, I know I am receiving the best care possible to manage the disease.
8. Is there a personal story that you would like to share about any of the physicians or staff in the program?
Dr. Pei’s team maintains a positive atmosphere for patients. One feels that the team genuinely cares! The sincerity with which Dr. Pei and his team ask questions about our health, engage patients with kindness and, at times, humour brings creates a positive atmosphere one does not typically expect when visiting a hospital! Appointments are always on time, the team is highly organized, and one feels that all questions are welcome and will be answered.
9. What would be your expectation to the team which is taking care of your condition?
Keep doing exactly what you are doing! As a patient, I know I am getting the best care possible by a compassionate team of highly knowledgeable and skilled individuals. While Dr. Pei may have new research assistants, residents, or hospital staff on his team, they all demonstrate the same level of professionalism and kindness.
10. Any other feedback and comment?
I truly appreciate everything Dr. Pei and his team has done for me and for other family members who also benefit from his program. Thank you!