Well that was an unplanned break in writing ive had a rough 4 weeks? It all started with a chesty feeling and temp …. I visited the doctor who said it was most probably viral – but within 12 hours my temp got worse and I had lung pain. I called 111 and we visited the out of hours doctors – my oxygen was 87 pulse over 100 and temp was 38.5. Oh and my lungs sounded bad.
So he actually escorted me yo accident and emergency and I was seen fairly quickly – for accident and emergency standards. I got a canula on attempt 9 and was on o2. I was moved to short stay and had a chest xray.
I thought I had aspirated abut of sausage I had choked one in he week before – but nope.
Side note – I have been on ranitidine has been recalled worlds wide and my reflux had been really bad and at time I had had to drain the acid through my peg because it was burning my throat …
So I saw a doc and she said the I had aspirated the stomach acid which had caused and infection Aspiration Pneumonia which caused pulminitus (I don’t know spelling of that one ) so I was put on IV antibiotics and as per usual my cannulas kept failing and tissuing.
I was sent to ward 17 where I saw Dr **** minds gone bland and Liz Anderson who is a feeing specialist nurse. It was decided my PEG needed changing to a JPEG which is where the PEG has a tail which sits in your small bowel therefore avoiding the stomach so that there would be less volume in the stomach.
So off I went to interventanal Radiography where there put the JPEG and the PICC line in, they knocked me out which was awesome, we ran some water through the JPEG it and it worked great then inte morning we were putting my meds through and BANG it stopped working 100% blocked…. we later found out it had flipped back into my stomach and coiled round my peg! Not good.
This is when I started getting super sick, and hubby posted this on my Facebook because I simply hadn’t even looked at my mobile in days.
Things just got worse every day it was confirmed I had an infection in my blood they started really strong IV antibiotics and a 10% dextrose drip because I was also having hypos.
My temp was 38.5 and I was having severe rigors my whole body was shaking as my temp went up to 39, then 40 ….then 40 and finally 41.2…. and this was on IV Paracetamol…. once my temp was that high I dont remember much at all, other than rocking in pain the shaking had hurt my muscles or so I thought, turns out it was the sepsis attacking them.
At one point I think they called G in and he must have called mum in I don’t really remember much just being scared…so scared that I was going to die… I tried to say to mum that G wasn’t great at the softer emotional side and she needed to look after D in that respect…I’m unsure if that was understandable. I remember her hands being cold and my little sis G was in bits love her.
During this time I had the ICU outreach nurses seeing me often aswell as 1/2 hourly or hourly Ob’s (blood pressure, pulse rate, O2 sats and temp) The staff were and are awesome. Like I say I dont remember much at all.
We discovered the bacterial infection was resistant to almost all antibiotics there was only one that should work …so I was pumped full of it and I started getting a little better. I was also put on TPN (Total parenteral nutrition, will explain more later) because at this point I hadn’t eaten or peg fed in 10 or more days..
We then discovered a heart murmur caused by my heart working so hard because of the infection, I had to have a special ultrasound of my heart to make sure the sepsis hadn’t caused a heart infection or abscess in the heart…thankfully hadn’t. My liver and kidneys were also being effected and I needed a potassium infusion. I was in a very bad way.
Another hurdle….the picc line was found to be filled with the infection and then it blocked…. I had no access… they called the anesthetic docs who came down with an ultrasound machine they could not find any veins, they tried my ankle but it lasted a few hours and bloody hurt so much. By this time I had missed 2 doses of antibiotics and paracetamol and my temp was sky high again.
They still needed access desperately so I was wheeled down to theatre to get a central line which is one in my jugular vein but as the anatomy of my neck is different post radiotherapy they had to do one via my groin. They gave me lots of numbing but as it was 4cm deep the numbing only worked on the top but it was so bad I was crying out in pain…but knew I needed it. Heres a pic excuse the knickers on show. It had 5 FIVE lumins it was HUGE. But what it meant is they could run lots of things at the same time. I had 3 pumps going at various times… but these are a short term measure.
Coming out the other side
I was starting to come out the other side I was physically and mentally exhausted. My favourite doc and nurse Liz came to see me to discuss what were the next steps… due to the omeprazole and lanzoprazol not working I’d been on IV ranitidine and it was doing its job but how would I ever get home? We discussed that once my bloods were clear I was going to get my messed up JPEG out and a normal peg put back and a single lumen (thin one port) picc put in on the other side, and that me and hubby could be trained to administer renitadine and cyclazine as I’ve been extremely nauseous. Perfect….
Later that day my medical PTSD which I manage to keep a lid on boiled over and i had a panic attack. Then when I went for my picc another but I kept my arm still adjust kept saying I need this its nearly Christmas….. and I managed it with help of the absolutely amazing team at interventional Radiology. It was in so they took out this bad boy…… I could put trousers on!
Around the 22rd I was feeling do much better and having a little snooze and a Dr came to tell me something….as I woke I thought omg I’ve wet the bed I was drenched….I quickly realised it wasn’t pee, I’d been sweating…..HYPO we quickly did my blood sugar it was 2.8 ish so I had to have some gel to rub on my gums and around my mouth as it absorbs qui9thst way… within 10 to 15 mins I started feeling more with it. The doctor said it’s not safe for you to go home and listed the dangers of hypoglycemia especially if I was sleeping.. I understood so mentally prepared for g to collect me Christmas morning before gifts and for me to return later in day for antibiotics etc.
I cant recall what changed but I was released on the 24th December and hot home in the west evening… we had 8 bags of medication….the pharmacy covered me for Christmas and new year closures and cause most are liquid it looked like we had robbed the place…. lol . I was told it could take up to a year to fully recover so a long road ahead.
Saying goodbye to ward 17 lots of hugs and a special mention for Christine, Justine, Amanda, Petra, Liz and inis…. and the agency nurse who’s name I’ve totally forgotten but she had beautiful purple plaited hair. I’ve probably missed someone apologies you are all awesome. I will just add Liz Anderson is simply the best nurse I’ve ever known and a beautiful person inside and out.
My hubby and son moved the Christmas tree into the main bedroom so I could stay in bed for Christmas morning but still be part of it…. and it was awesome…really awesome.
This also happened on my Facebook
I’m extremely weak and knackered I had a shower yesterday and couldn’t hold my arms up enough to wash my hair, so Gary had to help and I wasn’t strong enough to stand so ended up sitting on the floor (it’s a wet room). I hate that he has to help but he always say it’s no problem and reminds me when I’m well I look after everyone, it’s just my turn.
We had a great Christmas day thank you to everyone who messaged me or commented it really lifts my spirits, this past 4 1/2 weeks has been mentally exhausting I even experienced 2 panic attacks. And I’m now completely petrified of getting a temperature (I have to test 3 times a day and if over 37.5 I must contact the pic line nurses ..if 37.7 or above go to AnE immediately… if I cannot get there call an ambulance)
Thinking you might die, like theres a real possibility is life changing I’ve decided to try and get an electric wheelchair (the scooter is hard to use on my arms and isnt designed to fit in cars) and to use it….I mean get out more …no more excuses of too far for me to walk or bad pain day… I want to walk my girl to school so she can ride her scooter or bike which she asks for all the time.. not sure how we will manage it but I know we will some how, the NHS wont fund as I can walk with crutches which is fair enough. I’m looking around for ex display and reconditioned ones which halves the price….. from £5000 down to just over £2000… I know it’s a lot but we will get there and to be honest I cannot wait…
Any who I hope everyone had a great Christmas and a very happy and healthy new year to you and your loved ones. Feel free to pm me any time I love your messages and helping if I’m able, alternatively I’m pretty good at signposting.
Still smiling xxx
My awesome friend Laura has set up GoFundMe to help me but a wheelchair