Now a curve ball

I only seem to come on here when there’s something bad going on, unfortunately here we are again. I think writing it down helps me process things.

The first thing I say is as far as I know it’s not cancer let me start at the beginning.

As you know I’ve had constant problems with infections in my PEG site, so we’ve been essentially fighting to get a new peg site for best part of the year. Finally it was on the books, thanks to Liz (specialist nurse). Who is honestly one of the kindest people I’ve met on this crazy medical journey, she’s truly on the side of the patient and really really knows her stuff, like no one else!

The plan was getting it placed in September so we were all systems go. Just waiting for a date. I visited my GP with back pain causing chest tightness thinking I had asperation pneumonia again but I wasn’t overly concerned, as my chest sounded clear but my o2 sats were down she spoke to a doc at the hospital for advice. Unfortunately she called me at 4.30 saying that she needed to rule out a blood clot or a missed pneumonia, so sent me to hospital to get some bloods work and x-ray.

That in itself was a nightmare as G had to work the Junior ranks bar and there was literally no-one else who could and there was a function. We ended up asking a friends daughter, unfortunately they assumed G was coming to hospital with me and when they heard where he was they understandably thought very badly of us, thinking G was out drinking whilst they went out of their way to help. Made worse by G being delayed back. So that was pretty shit all round especially as they ended up keeping me in, mainly because my O2 SATs weren’t brilliant. So I stay in for a few days, I start to improve wasn’t needing oxygen at any point so things where good I was going home the next day all being well.

I then get a phone call to say “can you come in on the 16th to interventional radiography to get your PEG re-sited” I say ok no problem I’m I’ll be discharged by then. Then they say, as you already have a bed they can actually will do it the next day which was the 11th or 12th so we go ahead we do the Peg change not the nicest procedure but as far as I know it was ok. The next morning I woke up with a massive fever and my oxygen is like 87%. I’m immediately treated with oxygen and antibiotics. I start improving slowly but surely.

As part of the diagnosing of the infection I had a CT abdomen they found I had free fluid and air in the tummy which is where the infection was they suspected.

But here’s the clanger…. there was a incidental finding of Hydronephrosis of the right kidney with some *Can’t recall name/word* but it meant dead or diseased areas….my hydro thingi isn’t caused by a kidney stone or infection or even a narrowing of the tube from kidney to the bladder, it’s apparently on the inside which is only fixable with surgery.


I mean really are you kidding me…. have i not already had THE worst health and history.

I sware I’m being punished but I wish I knew what for.

I’m feeling incredibly scared right now, they’ve just done bloods and I have to stay in over the weekend due to oxygen plus I have to see surgeons. But I was told today that I would need 2 surgeries one to drain the kidney then to fix the issue.

Now I’ve had bladder problems for years caused by spinal cyst (subarachnoid spinal cyst t4 t5 compressing cord it was removed 2012). It’s caused me to need urethral dilation every 4 to 6 months and needing to self catherterise anywhere from 2 to 6 times a day. I’ve been looked after by the same lady consultant Mrs NC … she’s such a fantastic doctor and person (Sneek peek into how fab she is, when I told her of my cancer diagnosis we just hugged then cried together). Unfortunately with this new diagnosis means the end of seeing Mrs Nethercliffe as my urologist as I need someone close to home now. Think I may email her when I know more! But I’m gutted.

Well that’s me up to date, I’ll post more when I know more.

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