peritoneal dialysis – My Kintsugi Life

A moment I will never forget was looking out the window while the Baxter courier delivered my first two weeks of PD supplies. When he left, I was surrounded by a mountain of cardboard boxes. I could have built an epic fort, had I been so inclined. Sadly for the cat, I wasn’t.

About half the supplies I use in a two week period. The boxes mostly contain fluid or packages of plastic tubing.

I remember a lot of my friends saying that this was when they really realised this was their life for the foreseeable future. That was why I was surprised I wasn’t more affected by it. It was crap, obviously, but somehow, it was ok.

After about five weeks on PD, and thanks to the encouragement of my PD nurse, I felt brave enough to take the first steps to grabbing my life back.

As I wrote on Instagram the day before I left…

“The whole reason I’m doing dialysis is so I can have a life! Yes, I hope I will eventually get a transplant, but until I do, nocturnal PD is the next best thing. I don’t know how long my wait will be, so I don’t want to waste the life I do have.”

In September 2015, I had attended a Young NKF event in the Peak District, essentially a youth retreat for younger renal patients. This was an amazing experience and I was determined to go again, PD or no PD. Fortunately this was pretty much an ideal first outing, because it was staffed by renal nurses, including one whose specialist area was peritoneal dialysis! Perfect! The weekend went really well, I got to spend time with friends who live too far away to see frequently, and spoke to several other current and former PD patients, and it was amazing to be in an environment where I was surrounded by others who really “got it”.

The case for my cycler is officially bigger than my suitcase!

Where there’s a will, there’s a way! PD setup in the YHA youth hostel at Ravenstor.

In fact this trip went so well that it boosted my confidence to try going away again, and at the beginning of October 2016 I went to Blackpool to the NKF Conference.

What happened there was something you couldn’t make up if you tried.

dialysis, peritoneal dialysis, The Story of Holly & Billy the Kid

Chapter V: A paper tiger?

May 23, 2017June 10, 2017 Holly

On the 4th of August 2016, I went to have some routine bloods before a scheduled clinic appointment a couple of days later. I felt fine and went and wandered around the supermarket afterwards. But that evening, our landline rang. On the other end was a registrar from the hospital. He explained that my bloods had shown a huge deterioration in my remaining renal function. My eGFR was down to 8, and my potassium was through the roof. I was asked to attend the rapid review clinic at 8:00am the next morning, to be urgently reviewed by the consultant on call. My kidneys were, to put it mildly, decidedly unhappy.

I remember phoning a friend who, uncharacteristically, didn’t know what to say, other than “This is really shit”. She wasn’t wrong. Neither of us said it, but we knew this was it.

When I went to clinic the next morning, my eGFR had declined even further, and was now 3. I think the staff who saw me were surprised I was not only feeling ok, but still standing at all! Emma and I sat in the hospital cafe, drank tea and waited.

Several months prior to all of this, after discussions with the pre-dialysis nurses and a psychologist, I had made the decision to have (automated) peritoneal dialysis (APD), but because my disease had been relatively stable up ’til now, I didn’t have a PD access (Tenckhoff catheter) or any supplies set up at home. We thought we’d have more time to arrange that. No such luck.

This meant that Thursday and Friday were rather frantic. It seemed like everybody rushed around trying to check that I was coping organise to admit me to hospital, schedule the Tenckhoff placement surgery and arrange for me to start dialysis as soon as possible!

As a side note, I’m so grateful that several hospital staff I know quite well were also there that day; D. and R. and A. and especially other D. (you know who you are!), thank you so much, I got through that day because of the four of you – I will never forget that. ❤️

I had surgery on Friday morning (shortly after flooding the shower in the bathroom, much to the amusement of an elderly man visiting his wife on the ward opposite!) and had my first PD session that evening. All I’ll say for now is that it was rough. By the time I was released from hospital on Monday morning I’d had three treatments, and was stable enough to go a further week without it until I could attend a satellite unit to be trained to treat myself at home.

In all honesty I don’t remember a lot about the week in between. I felt much sicker then than I did before I went to hospital and I think I spent most of the time either sleeping or responding to the huge number of social media messages I was inundated by!

I remember being worried about the training. What if it was too hard? What if I couldn’t learn it and had to do hemodialysis instead? What if it didn’t work? I knew from the very beginning that the sooner I learned how to manage PD at home, the sooner I could go back to work, and find some semblance of normality again, so I really wanted to be able to do this.

I will write about the training in more detail in a separate post, but it turns out, I needn’t have worried about it. After the first of four training days, I remember leaving the hospital thinking “Ok. So this is what I have to do. There’s absolutely no reason why I can’t do this. I actually might be ok.”