"My miraculous parent"

My elderly parent started ongoing dialysis at Westmead Hospital late last year via a central line in his chest, which the renal doctor said was only short term. They have had two fistula surgeries since but is still getting dialysis via the central chest line for the past nine months. My parent said their appointments with the fistula surgeon have often been postponed by the surgeon so they continue to get dialysis via the central line. I am very concerned the surgeon has forgotten my parent.

My parent has had a rough but miraculous past year. They were unexpectedly taken to Westmead Hospital ICU after preparing for a colonoscopy. The ICU doctor told me that my parent would not survive the admission due to multiple critical issues including kidney failure. However, they did survive but was very frail and they were discharged with no support except a multitude of meds and follow-up appointments, which they and their non-English-speaking partner struggled to manage. They had repeat readmissions & despite support from me and my partner, ended up back in ICU a few months later with end stage kidney failure. My partner and I also struggled to support my parent because, not only do we live far from them, we are not trained or equipped to manage my parent's multiple serious health conditions.

Fortunately, doctors started dialysis then and my parent's health amazingly improved. I was able to get some post-discharge support organised for my parent but it was very difficult especially trying to liaise between my parent, their partner and a multitude of busy clinicians and service providers. My parent & their partner have been managing reasonably well since dialysis started and they are both very independent and intelligent. However they are elderly and will need increased support as they age & I just hope they are not forgotten by health services & left to struggle with serious medical conditions on their own, particularly because I do not live near my parent. 

They actually just saw the doctors recently about their arm fistula and was advised it is not viable for dialysis, so they are organising for my parent to do a home procedure through their stomach every 8 hours per day, instead of the current haemodialysis every third day at hospital. I really hope they provide my parent with ongoing nursing support at home to manage this ongoing procedure because they said the doctor emphasised the risk of infection.

While I have serious concerns, I also want to express my deepest gratitude for the many incredible staff who have cared & continue to care for my precious parent. THANK YOU.