I am a 67-year-old male with complex health problems including: Stage 5 ADPKD; cerebrovascular fibromuscular dysplasia, with a 9×6 mm aneurysm at the base of my brain and cardiovascular disease. I attempted dialysis earlier this year, but had to stop due to as yet unexplained autonomic dysregulation that let to blood pressure crashes and frequent dialyzer circuit clotting. After assessing various symptoms, including syncope, visual disturbances, cognitive problems and hypokinesia, my neurologist made a referral for possible Lewy Body Dementia to Dr. Clark Funnell at UBC Hospital’s CARD centre. That referral was faxed on March 24 and I was warned the wait time would be long. In June, I called CARD to check on the waitlist and the receptionist insisted there was no record of the March 24 referral. My original neurologist’s receptionist kindly checked on my behalf, assured me the referral had been made and that she had got me added to Dr. Funnel’s cancellation list. Since the normal wait time is six to nine months, I checked again in early September. This time, my neurologist’s receptionist said the referral was made in June so I might have to wait until next March. I emailed my neurologist to ensure she was aware of the situation and, despite what the CARD center receptionist told me, the referral fax was confirmed in March 2026. I can’t do dialysis and my unresolved neurological issues rule out a transplant. With an eGFR of 15, conservative care might get me three more years. So every month if delay in diagnosing my neurological problems, which are getting worse, is a month closer to my death. Losing faith in our medical system to handle basic referral paperwork efficiently, and without confusion, only makes a difficult situation worse. I am a regular user of BC’s Access My Health patient portal. It has a message function which my various doctors never use. It would seem simple solution to have all medical professionals use that portal to keep patients apprised of all referrals, confirmations and progress through waiting lists. That simple knowledge of where a referral stands would provide peace of mind. At the moment, I’m not certain my Lewy Body Dementia referral is active or was lost in the shuffle. Living in the dark, counting the days and wondering how much worse things will get, is slow torture, not the “world class” medical care politicians and bureaucrats assure Canadians we are receiving.