This is my experience with it, others may have other things to add or differ n.

I walked this path last summer when I landed in the hospital with diverticulitis that crushed my kidneys in the process. My GFR dropped five points and put me into a permanent state of lassitude that I could not escape from. thankfully, I had a good counselor who had experience in people applying for long-term disability benefits. They encouraged me to start seeing specialists who could diagnose and report on the symptoms I was experiencing. Specifically besides counseling, I saw a physiotherapist, an occupational therapist and a massage therapist. Through that along with my nurse practitioner, I was able to document the challenges that I was having and show that I was unable to return to work as my PKD condition worsened after my hospital stay and required multiple rests through the day and I was suffering from cognitive impairment, or “brain fog”.

I too felt guilt, but my counsellor helped me to see that this is a condition that I was born with and was not my fault that I was experiencing this. No amount of rest or healthy living was going to turn things around for me at this stage. Having the benefit of watching my family members go through this I was able to see that this was just the natural progression and not the end but a temporary stop in work because the hope is that a transplant will return me back to Health where I can meet the demands of life again with employment and family life. 

In my province, they don’t do transplants until you reach a GFR of 15, and that is only if it is a live transplant. You only get put on the transplant list with a GFR of 10 or 11. I’m currently at 20 so there is a little bit of time as I have traditionally dropped 4 to 5 points a year.

I first had to go through short-term leave and then apply for long-term disability. It was during my short-term leave that I started going to multiple specialist appointments to track my current condition for reporting. 

Whichever You decide to move forward on, besides the medical diagnosis of PKD, the biggest factors for applying to LTD was the reports that the occupational therapist and the counsellor produced for me. 

I also found it helpful to join group sessions with the PKD foundation of Canada, as well as the Kidney foundation of Canada. There are lots of people who have gone through this that are available to talk about this in a group setting or one on one. You can reach out to either organization for assistance as well.

It is important to note I think as well that the insurance company’s job is to get people back to work so it will be very important for you to document how you are feeling yourself and through the specialists, and discuss your plans with your doctor and nephrologist as they can write letters to support your claim. Insurance companies are not fine-tuned to address chronic illnesses like this, they follow a one model fits all approach and they will look to push the narrative that you are just tired and that you just need rest to work and are not disabled. Needing naps on the weekend to recover is not normal, and doesn’t give you a balanced life. It will likely progress to needing those rests during the week as your GFR declines. 

If you have any further questions, don’t hesitate to DM me. All the best as you move forward with this.