"Urosepsis/nephrostomy"

I have had both good and bad experiences with urology/nephrology. In November 2019, I had to come in via ambulance with serious kidney infection. All staff I encountered were fantastic. The following morning I developed sepsis. I don't remember massive amounts of information, but the doctors and nurses on A9 were fantastic and I spent a few days in Critial Care. Special mention to nurse Elaine, wonderful lady, who looked after me and kept me sane and calm!

A year on, the same thing happened. Got brought up by ambulance, treated like I was a time waster. I kept begging for help to go to the toilet and even my bell was ignored. Yes there is/was the Covid crisis, I waited hours to have any pain relief. Was finally put on A9. Due to the same issue flaring up again, was told nephrostomy was the only option. I really out up resistance to this, as I detested it last time and still do! Was told I would have exploratory surgery, to see if scar tissue could be removed to insert stent instead. So I begrudgingly agreed to nephrostomy, on the understanding that I might be able to ditch the nephrostomy in January.

When January came, got called to the clinic, my surgeries have all been out on hold for 12 to 18 months. I have now also waited for right kidney removal for over two years. And apart from tube changes, I have had no appointments, apart from to untighten a tube that had been screwed in too tightly from tube change, I have heard nothing! ! I have had nothing but constant infections and pain since having the nephrostomy, I've lost my job, I have had to self refer to Healthy Minds, from the impact on my mental health, I feel like I have been forgotten about.

I know unless I get kidney failure of sepsis again, that it is unlikely I will be remembered, seen or treated. Fair enough patients with cancer and more serious issues need to take presidence, but apart from 3 monthly tube changes, nothing is done.

When you are lucky enough to see anyone from urology/nephrology, they are really good, over worked and wonderful staff. The staff who look after you in RI for tube changes are also very good. But for the record, the tube changes do hurt, no gas and air doesn't cut it, I do find every tube change traumatic and yes I do want sedation please!

I know I'm not the only one waiting. I know other departments across the board are struggling too. But we are people not just hospital numbers and statistics. How do I feel? I hope I've made this clear. Will writing this make an iota of difference? Probably not.