Thriving in My Third Year of Home Peritoneal Dialysis - Winter 2022/2023
Hello Hello!
Welcome to my 5 part series on the highlights of my third year on Home Peritoneal Dialysis.
Today’s post and subsequent posts in this series will be a look back on the highlights of 2023, which honestly has been one of incredible highs and manageable lows, which is already a great improvement on previous years.
For context, I received emergency haemodialysis in November 2020 and then was swiftly moved onto my choice of peritoneal dialysis at my hospital in the height of the pandemic. However, due to complications during kidney failure, I did not return to home peritoneal dialysis until a month later in December 2020.
Hence 2023 was, in effect, my third year on home peritoneal dialysis.
I have so much gratitude for my third year on peritoneal dialysis and truly believe it was the year that I thrived and began to move forward in every aspect of my life.
In all honesty, I don't think I recognised this until the end of summer but in every month of the year, I took positive actions in my life and concerted efforts to make life on dialysis more than just "living" on dialysis including starting mykidneyandlai.com in May 2023!
When it comes to the end of a year, it can be difficult to stretch our minds back to Summer let alone January, particularly when you are on dialysis. As someone who works and dialyses at home, the seasons seemingly merge into light months and dark months in the UK.
However, on recounting the year, I enjoyed looking at it through the lens of the corresponding seasonal months to not discredit the fact that unlike previous years, there was not one particular month which stood out but each month contributed to a wonderful memory, a lesson learnt or a new experience. It truly brings together this idea that life is a tapestry and that every month does not need to be the bright thread to contribute to something that is beautiful.
In the best pieces of art, there is light and shade as there was for me in 2023.
Let's start off with a bang...
December 2022
📞 False Call
The start of my third year on home peritoneal dialysis was with an unknown number calling at 3am. To cut the long story short, I went into hospital the next morning to be worked up for a transplant to find out at 1am the next day the kidney was not viable.
At the time there was a lot of measured hope from myself, I had spoken to many kidney patients who relayed that the first call rarely leads to an actual surgery. However, as you can imagine there was a lot of excited hope within the family and perhaps a small light in my heart started to glow...but this was quickly snuffed out at my hospital bedside by the transplant team.
Nevertheless, my hopes weren’t completely destroyed as Christmas was just round the corner! Furthermore, I was reassured by my medical team that receiving one call is the sign of many more calls to come in 2023!
January 2023
🦠 Peritonitis
I leapt into 2023 with great optimism, only to be hit with my first ever bout of peritonitis and it was on the day that my parents left for a month long holiday no less! I’m not joking, it was literally the next morning. 🫠
I immediately noticed on the initial drain the night that they left, my fluid was not as transparent as usual. Once confirmed, I was on antibiotics for 2 weeks. This is what I call a manageable low because I came out of this experience feeling okay with myself! 😅
I gave myself a lot of credit that I had noticed the early warning signs and suffered minimally during the treatment other than nausea, all whilst I was living and dialysing alone for the first time.
During this period, I became closer with my neighbours and nearby relatives, who helped me to bring in the bins on those early mornings where I was too sick to disconnect as well as driving me to pick up antibiotics from the hospital, respectively.
Another random upside of having peritonitis was that I felt like a big anxiety had been lifted. The fear of contracting peritonitis has always been there since my PD catheter insertion but having survived the ordeal both practically and emotionally, I became a little bit lighter in my approach to life but of course not my peritoneal dialysis set up!
Well I do have to say that there were potentially some consequence from having peritonitis, even with the very mild case and early identification that I had. I wrote about the emotional weight of contracting peritonitis that led to declining dialysis efficacy and a significant increase in prescription concentration in the final instalment of Fighting Fluid Retention.
Lai
February 2023
🏡 Living Alone on Home Peritoneal Dialysis
This was my first time living alone on dialysis for such an extended period of time and was something that I could never have thought I was capable of in my first year on dialysis, maybe even in my second year, I was too anxious still!
In my first year, the fear was the practicalities of doing dialysis, work, groceries and all other household jobs. Starting home peritoneal dialysis is understandably a massive ordeal to take on and I have been fortunate enough to share the daily household tasks with my parents, which allowed me to focus on my dialysis routine, general health, work and study.
By the end of my first year on dialysis, I had become very familiar with dialysis and all the troubleshooting issues that could occurring at night and during set up.
In my second year, the fear of living alone was entirely emotionally and mentally driven. Perhaps, I had become too comfortable living with my parents always being in the house but it was likely because I had stopped socialising significantly in that past year. This was largely driven by the pandemic, but I consciously decided to disconnect from social media and generally started pulling away from a lot of my friends as I was adjusting to dialysis life.
Thus, in my second year, when left alone to work and dialyse at home, I often struggled with the quiet and loneliness of an empty house.
I can happily report that in my third year on home peritoneal dialysis, albeit with the support of my neighbours and close by family, I had an enjoyable experience living alone! I invested time in my hobbies during my evenings on dialysis and learnt to batch cook during the weekends and expand my renal diet friendly baking repertoire. I made a significant effort to reconnect with friends and hosted board game evenings and dinners. All of which helped to fill the house with noise and keep my mental space full and occupied.
For those who like reading deep cuts, here is one of the earliest posts I made regarding my experience on the first two years of dialysis. It was expanded diary entry I made during dark winters of 2022 and for those who have poked around the website, know this is the inspiration behind magic mirror magazine!
Lai
Concluding Remarks
There has been light and shade throughout my year of 2023, but this year I have learnt that life is much more complex than the filtered beauty we see on social media, and fictional books and films we watch whilst on dialysis. It can be hard to remember this, when you are spending so much time on dialysis trying to escape the world we live in through these mediums.
My first three months during my third year on dialysis doesn't scream "the best times of my life" but what I see is the way I reacted and dealt with each obstacle that stood in my way.
My resilience to bounce back and find the silver linings in each setback, shows to me, my personal growth from previous years on dialysis. Perhaps even before then.
Tackling this unmistakably challenging life and chaotic world we live in with the energy and motivation to problem solve and an optimism for happiness in the now rather than later was a game changing start to my year.
Please stay tuned for Spring 2023 (March, April, May)!
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