So, I was finally home- hoo flippin ray! At last a decent cuppa, which is exactly what I wanted when I got through the door (Yorkshire Tea- I love you!)
Now what though...? I was still recovering & getting used to my new"attachments" so I needed to take it easy, which meant no work for the foreseeable future &...no cooking.🥺
The first time I took a proper look in the mirror since getting the nephrostomies, I decided that I resembled one of the "Borg" from Star Trek (don't worry I haven't tried to assimilate anyone...yet!)
I needed help daily with pretty much everything- washing, dressing etc. Thank goodness for Mr W! He also had to take over the cooking & said that he'd found this really good website with loads of easy, money saving recipes....I wonder what it's called....🤷♀️(rubs chin thoughtfully..)
My life mainly consisted of resting & hospital appointments- many, many hospital appointments!
I also started receiving regular deliveries of medical supplies- drainage bags, dressing etc. It was like Christmas, with Santa delivering mildly disappointing brown cardboard boxes full of "joy"!!
The bags & dressings need changing weekly, & as everything is stuck to my back &/or slightly out of reach for me I need another pair of hands to do this job for me- enter Mr W (again!). One of the lovely Urology dept nurses gave him a crash course & he's become a dab hand I'm happy to say (who says romance is dead eh?).
Over the coming months I learned a lot more about my condition & all the other issues & complications living with stage 4 Chronic Kidney Disease can bring. One of these things was anaemia. Now, I have been slightly anaemic in the dim & distant past but this was much more serious & came with some alarming symptoms. Mainly dizziness, racing heart &...hair loss. When I say it was coming out in handfuls I'm not exaggerating. I would wash it watch as it slithered down the plug hole...
I remember one particular day a couple of weeks before Christmas. I sat & sobbed as I stared at a pile of my hair on the dressing table, I know it might sound a bit melodramatic but I was gutted. I've always had long hair but it's never been very thick & now it was getting thinner. I was convinced I would be bald by Christmas Day.
Then, I looked in the mirror, gave my head a wobble & had a little word with myself.
Ok, worst case scenario, I need a wig- that means I can have any colour right?! I decided I would get a purple wig & maybe a neon pink one too! Suddenly, it didn't seem so bad & in the grand scheme of things losing my hair was nothing when I considered what could have happened just over a month before...
On 17th December I got an early Christmas pressie! Off I went to hospital again- this time for an iron infusion. An ordinary supplement wasn't going to cut it for me so an IV shot was needed! I was kind of hoping to develop some sort of mutant superpower but sadly it didn't happen..
It would take a few weeks to notice any change but eventually about a month later I noticed a significant change in my symptoms & my hair had stopped falling out- YAY!!
Christmas was quiet but nice & a chance to catch up with family, then all of a sudden, it was January & I had a full diary of hospital appointments. At one point I realised that, the only time I left the house was to go to the hospital! Not quite the jet-set lifestyle but on the plus side our local hospital has a cracking bakery so to sweeten the deal I would treat us to something yummy on the way out!
Fast forward to now...
Life is certainly different. I still need daily help with various things, I usually end up needing a nanna nap by the afternoons & any kind of outing needs to be carefully planned to allow me plenty of time to get ready etc beforehand & to recover afterwards.
I know I've been lucky though.
At my last review my Renal consultant told me that my kidney function had gone up to about 21%. Not ideal but at least it hadn't gone down! Looking to the future, I may need more dialysis & possibly even a transplant. However these are just "maybes" at the mo & hopefully waaay into the future.
For now I take each day as it comes & try to keep a positive attitude. I like to try & have a sense of humour about my situation too & having Mr W around certainly helps with that- I honestly don't know what I would do without him...
Obviously standing in the kitchen recipe testing is out of the question right now & I do miss it a great deal. I'm very fortunate to have lots of lovely, loyal followers (yes, you lot!) & I've missed engaging with you. It's taking me a while to think of other ways to connect & this (hopefully) weekly diary seems like the perfect way to do it. There may even be the odd video now & then!
That's about it for now If you've stuck with it & managed to read this epic tale, thank you from the bottom of my heart. Writing everything down has actually been incredibly therapeutic & to be perfectly honest has made me quite emotional.
So again, thank you for taking the time to read this, you're all bloody fabulous!
Love Sarah .🥰❤️❤️xxx