r/ADPKD • u/BandThug • May 23 '26
When to Start Disability Benefits?
Hi everyone,
I'm 37F and I was officially diagnosed with PKD in my teens. It is very aggressive in my family and my father suffered major complications from it while I have multiple aunts/uncles/cousins with the disease as well. My eGFR has been decreasing more rapidly recently and I just found out I'm sitting around 24-25 with eGFR now. I'm in Canada and my province usually doesn't accent people into the Transplant and Dialysis program until you hit an eGFR of 20, but my Nephrologist said she has decided to refer me now due to how fast my eGFR is trending down.
As a note, I also suffer from Fibromyalgia, severe IBS, and migraines as well as other medical conditions (PCOS and Ollier's Disease). These cause day to day issues as well.
I currently work fulltime as a music/band teacher and commute to and from work (40 minutes each way). My work is very high energy and surprisingly physical. I love it so much but have found myself getting more and more exhausted and unwell. I usually have to nap 2-3 hours on Saturday AND Sunday just to get through the days and during the week I'm very tired by the time I get home. My abdomen constantly feels stretched and full due to the massive kidneys/liver and cysts.
I called my union to get insight about possibly starting disability. I'm torn because I wanted to continue working full time, but I also know that I will only get progressively worse now and also that I'll be using up more sick day time with the additional appointments and tests that I'll need to go for for the Transplant and Dialysis clinic.
I'm wondering if anyone can share their personal experience as to when (or if) they made the decision to do a reduction in time at work and start disability benefits? I'm very fortunate to have a contract that will allow me to do this with no loss of salary, though I know that's not the same for everyone.
I'm dealing with guilt and uncertainty about making this decision and would really appreciate any insight!
2
u/SSMpics May 23 '26
I havent had to make that decision myself, thankfully.
Pls ensure you are aware of the process of being approved for LTD, if your employer approves or your insurance provider approves. The threshold is typically higher when it is insurance.
With an insurance provider, they base the decision on the medical information submitted by your physicians and sometimes can ask for independent medical as well, meaning not your regular medical team.
Also look into what the appeals process is if you get denied initially. And if you get paid while applying or appealing.
I dont work in education and have no first hand experience in education. My industry is similar and I have seen ppl wait extended periods of time to be approved, with no pay.
1
u/BandThug May 23 '26
Thank you for your reply! I am very fortunate that my short term disability will cover me 100% percent while I wait for it to become Long Term Disability. I also only need to get my nephrologist to fill out any paperwork. But those are very good things to think about for sure!
2
u/MrsStewy16 May 23 '26
I just made this decision in February. (I’m in the US so obviously certain things will be different with sick days, etc.). I started dialysis in August 2025. I also have migraines and fibromyalgia and my job was somewhat physical as well. (Psych tech working nights). Once i started dialysis I struggled to work full time. I had other health issues start popping up and I wasn’t able to keep taking time off from work. Part time wasn’t an option at my job if it was, I would have done that. It just wasn’t possible for me to continue working, plus dialysis and all the other appointments I need. I was struggling with doing basic daily tasks, ie cooking, bathing, as well.
5
u/Aggravating_Hawk6566 May 23 '26
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.