Richard's Dialysis Diary
Richard is 34, husband to Lindsey and dad to two boys aged 10 and 5. His journey with Polycystic Kidney Disease (PKD) began when he tried to join a local gym at 26 and was told his blood pressure was unexpectedly high.
Following a prompt visit to the GP, blood tests and an ultrasound scan revealed that his kidneys were covered in cysts. Richard had inherited PKD, a condition he knew very little about.
It was a lot to take in. He had already lost more than half of his kidney function before he even knew something was wrong, and he learned he would one day need a transplant. What was supposed to be a life in full swing – family, work, plans for the future – suddenly felt fragile and uncertain.
That day came sooner than expected, and Richard has recently started dialysis. The routine can feel overwhelming at first, so he has begun keeping a dialysis diary to help him make sense of everything.
From finding ways to stay comfy and navigating loo breaks to beating the boredom and handling the discomfort, he shares his experiences with honesty and a healthy dose of humour as he comes to terms with this life-saving commitment.
Dialysis Diary - First Session.
13/11/2025. Duration: 2 hours
Arrived a little early, to make sure everything would be smooth. Unit was a lot busier than when I visited for my iron infusion. Nobody at reception, which was a bit concerning!
6pm, a mass “come on in everybody” from the main ward, and they were expecting me.
Quick tour and a form to sign that I understood what the treatment is for and consented.
Shown to a bay with a recliner chair, then given a tour of the unit and pointed out nurses (blue tops) and healthcare assistants (mint green tops). Told I can get up to use the toilet if I need to. Went for a tactical wee anyway just in case! Weight and blood pressure checked.
Machine had some sort of cleaning process to run before senior nurse (Chris) hooked me up around 6:30. Took the opportunity to eat my packed tea (gammon and pasta) while fully mobile.
Finally got plugged in just after 7pm (new fistula meant it needed 3 goes to get blood flow 😭🩸). Single needle for now, which is apparently normal for first timers. They’ll get to 2 needles (1 in, 1 out) as they build up the time.
Tea and biscuits not long after 7pm! Not sure if there would be another round if I was there for 4 hours, we shall see.
I don’t need to regulate my fluid intake yet, as I’m still weeing regularly (sorry if that’s TMI, but I’m writing down everything I can think of!).
Dialysis through my left arm, stayed hooked up to a blood pressure monitor on my right. Lesson for next time, put books and anything else I want on the table before I start!
Once I was all set up, the 2 hours went by pretty quickly with no drama. It’s a little uncomfortable keeping my arm still for so long, but no actual pain. Did a bit of social scrolling then put "Inside The Factory" on TV.
Next time will be 2.5 hours, still with one needle.
Dialysis Diary - Second Session
15/11/2025. Duration: 2.5 hours
Remembered to pre-download a few shows on Netflix and BBC iPlayer. I’m sure there is a WiFi code, but I forgot to ask for it last time.
Recognised another patient from St Helier when I arrived, had a catch up and got the WiFi code from him. He’s been coming for 3 months, drives himself a similar distance to me with no problems so I’m feeling ok about that.
Finally hooked up around 6:40. Different nurse in charge tonight, Joao. He got a blood flow first time so I’m straight onto 2 needles. Joao explained that it’s much more efficient if in and out don’t have to share a tube. He considered adding a blood thinner as I’m on a slightly longer time but decided there was no need.
Picky tea tonight: mini sausages, cherry tomatoes, cheddar slices, crackers and grapes.
Blood tests for iron level, haemoglobin and hepatitis immunity. Blood was taken out of the line rather than an extra needle, very civilised!
Tried reading a paperback book - remembered to get it from my bag in advance! I have to keep my fistula arm pretty still but it’s manageable. (The Secret Barrister: Stories of the Law and How It’s Broken).
Tea and biscuits again at about 7:15, roughly the same time as session 1. Custard creams for me!
Got asked if I want to do my own machine setup and needle inserting in future 😳 Apparently pretty common, but I think I need a bit more time to get settled first.
Blood pressure cuff set to take a measurement every 45 minutes; I was told this, but it still took me by surprise. No beep or any warning from the machine, just suddenly felt the pressure in the cuff. A little higher than when I measure at home but looks ok.
Feels a little colder in here than last time, glad I thought to get my blanket out! Unclear if being double needled makes a difference to how I feel temperature…
Finished my book with 49 minutes still to wait. A hardback might be trickier to manage with one hand immobile, one to try next time.
Told to bring my erythropoietin (EPO) with me next time, then they can feed it into the machine rather than me self-injecting.
After unplugging from the machine, I have to stay 10 minutes with pressure on the dressing in case the needle holes bleed 😳 . This didn’t come up last time, so I guess they need to be more careful with 2 needles.
I actually feel quite energised after these sessions. I suppose it’s 2 factors: first off, I’m sitting in a comfy seat for several hours, rather than being up and busy, and secondly my kidneys no longer have to struggle to do their job, which was presumably taking up a lot of energy that my body can now put to other uses.
P.S. When I was weighing myself at the beginning, I spotted a poster about patient transport. I’m booked to use them next week, but the poster said the time slot was 11pm to midnight for the Twilight session (please note any sparkly vampire references WILL see you blocked!). That would mean waiting up to an hour after a full 4-hour session, and I’m expecting next week to be 3, 3.5 and 4 hours respectively, so that’s even more waiting.
Add to that the fact that they’ll presumably have to weave around dropping people off all over the place, and that adds up to a long night! I feel fine to drive myself, and the roads will be quiet in any case.
Dialysis Diary - Third Session
19/11/2025. 3 hours
Catch up on Richard’s third session and stay with him as he navigates the early days of dialysis, one entry at a time. Follow him on Substack.
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ADPKD, Dialysis, Organ Donation, PKD, blood pressure, hypertension