dialysisperitoneal dialysisThe Story of Holly & Billy the Kid

Chapter V: A paper tiger?

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. It almost never rings. 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; D. and R. and A. and especially other D. (Hooray! I love that you read this far!), 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. Doing a full session of overnight PD with a line inserted hours beforehand is far less than ideal. 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 asleep.

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.”

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I don’t look nearly as ill as I was. I also wished I had longer arms for optimal selfie taking!

ADDENDUM (2.4.2018)
I didn’t initially include this when I wrote this post, because I didn’t think of it, but now, almost a year later, I want to go back and add in something else that really helped me during this period of my life. This Youtube video. Perspective is an amazing thing, and mine certainly changed when I watched Maddy, even if she didn’t know it yet.

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