Omar's Story | Voices of PKD
My name is Omar*, and I was diagnosed with PKD almost two years ago. I'm currently 22 years old, and I knew nothing about PKD before I was diagnosed.
For three or four years prior to my diagnosis, I was experiencing severe headaches, and after I changed my family doctor, I did some bloodwork and discovered that I had increased creatinine in my blood.
The doctor ordered an ultrasound and a follow-up MRI, and found that my kidneys had cysts on them. I also had liver duct dilation, and some cysts and scarring on my liver.
When we looked into my family's medical history, I learned that my maternal grandfather had died of kidney failure, although my mother doesn't have PKD. She's likely a carrier, and I am likely to have ARPKD.
In addition to PKD, I also have liver disease and heart disease. The condition is called Caroli's syndrome, which is even more rare than ARPKD, affecting around one in 1,000,000 people.
When I was first diagnosed, it hit me really hard, and I recall sitting in the parking lot trying to take in the news. It was also difficult because my parents were out of the country at the time, and I didn't have their immediate presence and support.
I felt a lot of anxiety and stress. Thankfully, I had friends who really comforted me, and told me to stay strong. It was really helpful to be able to turn to my friends during this time, and then eventually to my parents, when they returned to Canada.
My doctors have been extremely helpful and cooperative throughout my diagnosis and treatment, and I am now on three medications that aid both the kidney and heart. Taking these medications has definitely given me a different perspective, and kind of put me into a position that I didn't expect to be in at 22 years of age, but I am entirely accepting of it, and staying positive.
My kidney function has declined slightly since I was diagnosed, although my health is still relatively stable. I often get headaches, which is a symptom that still needs to be improved. I sometimes experience pain in my bladder, back, and stomach.
My blood pressure was very high when I was diagnosed, but it's well-managed now. And another piece of good news is that my liver function is great.
I've recently graduated from an undergraduate program in Science, and am looking to pursue medical school and become a doctor. Being diagnosed with this condition has shown me the importance of raising awareness of such conditions, and advocating for the development of cures and further research. I want to contribute to this in any way I can, as I continue to volunteer and try to become a nephrologist, to hopefully bring a cure to all kidney diseases.
Out of all the specialities in medicine, I'd definitely choose to be a nephrologist. My interest in nephrology developed when I started going to my nephrology appointments. I felt really out-of-place in the nephrologist's waiting room, as most of the patients were much older than I was.
I also didn't really feel any comfort coming from the nephrologist themselves (my nephrology appointments are usually really brief: "Okay, bye!"), and so I want to be more understanding as a doctor myself, and apply my own understanding to empathize with patients. It needs a more personal touch.
I've already spoken with some prominent nephrologists who've given me an idea of what I have to look forward to in my studies and residencies. It's a long journey, but it's worth it.
If I had any advice for other young adults going through a new PKD diagnosis, I would definitely recommend trying to find support groups, and to share your stories with others. Try to alleviate your burden - it's not a good idea to keep everything inside, and that's coming from personal experience.
Right now it's a mental battle for me. There's a lot that's unknown. I can't get a grip on what my future's going to be. I don't know how PKD will affect my life in the long run.
I know that the disease will likely lead to kidney failure, and having to stay on dialysis until I find a donor. I think about whether I'll be able to find a kidney donor or not, when I need one. It's great that there are more and more living donors out there, and that people are willing to take on such an ask. But it also goes to show the kindness of humanity, and how we can all help each other in times of need.
As of now, I want to keep myself in the best shape possible, so that I am prepared for the challenges to come. I actively exercise, go to the gym and participate in sports, and have a strict control on my diet. While living with the disease is out of my hands, doing my best to slow it down is not. I aim to stay as healthy as possible and give the disease a heck of a time progressing!
*Name has been changed to preserve this patient's privacy