Merry Christmas, have some dialysis

I’ve written this as if I was making notes at the time but I’m actually writing it on January 1st a week after these events. If I mess up my tenses, that’s why.

2pm, Christmas Eve, 2019. I’m sitting with my mother in my father’s car in the driveway of my uncle’s house. We’re in Northampton for Christmas but I have to return home to Reading for a few hours because today is the day I start dialysis.

Home is Reading so it’s at least a 90-minute journey, and assuming I’m feeling ok after my first treatment we’ll be driving back so we can be back with the rest of the family on Christmas morning. I’m trying to focus on the fact that I’m being allowed to drive my Father’s car so my mother doesn’t have to drive so far in such a short amount of time. This is a very rare treat.

I don’t really know what to expect when we get there. I’ve read all about hemodialysis. Ever since they created my fistula around five months ago I’ve made sure I know what to expect since knowing helps me cope with my anxiety. I know what goes where, what then happens to my blood while I sit/lie there, likely side-effects, unlikely side-effects, and any other information I could find.

But I don’t feel prepared.

So, I focus on the drive to avoid thinking about what’s coming. That, combined with a chatty mother and minimal traffic results in a relatively quick journey. We’ve arrived.

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I’ve been in this ward before. I had to pick up an anti-bacterial wash to use before this first session so I know where I’m going. Tentatively approaching what appears to be the nurses station a nurse takes my name and he directs me to the other side of the ward and points at the scales. Fantastic!

I get on, wait for the number to settle, and enjoy a small moment of joy when it settles lower than I’ve seen it be for years. He then directs me to a basket full of small pieces of paper and a pen. I make a note of the joyous number and follow his instructions to take a seat with mother in tow.

And now we wait.

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This first session will only be two hours long. The next one will be three, and every one after that should be four unless I have “issues” with the process.

I look around the waiting area at the other patients. These are people I will probably get to know pretty well. We’ll be here three times a week at the same times every week for the foreseeable future. They seem like a friendly, eclectic bunch; there’s some cordial chat going on and the atmosphere does a good job of not matching my inner turmoil.

And we’re still waiting.

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About forty minutes later after nearly everyone in the waiting area has been called through it’s finally my turn. I follow a nurse to one of the articulated bed/chair things and sink into it. Damn, that’s a squishy mattress!

“Yes, it is my first time.”

“Yes, my fistula is on my left arm.”

“Yes, this is my mother, can she have a chair?”

We sit watching a flurry of activity. Three nurses take turns to examine my fistula and they all comment on how good it looks. This has been a common opinion from every health professional who has had the pleasure of poking it. I guess they do exceptional work up in Oxford!

A fairly ridiculous number of packages are being opened next to me. Much of it gets attached to the dialysis machine, and then I spot a needle. The needle.

Dialysis usually involves two connections to your arm: one for out, the other for in. My fistula is apparently not yet mature enough to handle two needles so they’re only doing one today. I think “yay” should be my reaction to this. Utilising another coping mechanism I ask them to explain how it works with just one needle. Pretty obvious really: it pulls some out, cleans it, then pushes it back in.

The needle concerns me. As with anything medical Google is a mixed bag, and I came away from my research with anecdotes at both ends of a spectrum: no pain at all to all the pain at once. The median opinion was that it’s a slightly more aggressive blood draw prick so that’s what I’m hoping for.

The nurse tells me they’re not taking anything off me today as my weight is below the goal they have for me. I take this as good news as that process triggers some of the potential side-effects.

They put a blood pressure cuff on my right arm and arrange the cable so it’s out of the way. It would appear that’s a permanent fixture during this process. Some antiseptic spray and a couple of minutes later it’s time to get hooked up.

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I don’t look. It’s taken me decades to be able to watch a blood draw needle go in and what with not knowing what to expect with this one I decide against getting the full effect on the first try. I’ll have plenty of opportunity to get that comfortable with this process.

“Try to relax. Sharp scratch coming now….”

Hoorah, I’m distinctly average! After a two very long and pretty intense seconds of scratchiness I can no longer feel any pain. I thank the nurse for her expertise and relax. I’ve always felt any mild pain through strange tingles in my feet and that was a doozy, but it’s over now. The ants crawling all over my soles gradually leave to bother someone else. Much surgical tape is now attached to my very hairy arm to hold the tubes in place. I silently tell the ants to not go too far as they’ll be needed again soon!

The nurse puts two hours on the clock and I watch as the clear liquid in the two tubes chameleons through progressively darker shades of pink and eventually settles on red.

It’s started.

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The nurse asks me if I’m diabetic. Slightly concerned that they don’t already know that I respond affirmatively and she says she needs to check my blood sugar level. Great, another needle prick. But no, wait, this is great: she sticks a needle into the tube that’s already attached and takes what she needs from there. One prick, much blood. Apparently they will do all my blood tests the same way from now on. Result!

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For a little while I can’t really feel anything. It doesn’t look like the liquid in the tubes is moving but I know it is. I can’t feel anything pulling or pushing when the tubes attach to my arm, I can just feel that something is attached.

This ain’t so bad.

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We all knew that wasn’t going to last. About 10 minutes in and I’m feeling extremely nauseated and light-headed. I’m pretty sure my blood pressure is dropping. I make a passing nurse aware of this and she hits the screen of the dialysis machine a few times to start a BP check.

I was right. My BP has dropped to 114/54 which is pretty low for me. The nurse recommend tipping the chair back so my feet are raised up compared to my head. It’s a miracle cure; within a minute I’m feeling a bit better and my mother remarks that my colour has come back. Still feel quite nauseated but it’s bearable. I close my eyes and try to not think about it.

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Free tea. So thankful for the NHS in so many ways today! Biscuits are also offered but there’s no way I’m going to be able to keep anything down right now. Shame.

The dialysis machine displays the countdown timer. Time seems to pass very slowly and the nausea doesn’t really get any better until near the end of the two hours. I spend most of the time with my eyes closed or chatting with my mother. The connection point is a bit itchy at times but other than that and the awareness that something is attached I can’t really feel anything. On a couple of occasions I forget what’s happening and start to move my left arm to grab something on the table. Thankfully I remember before I go too far and I don’t cause myself any “issues”.

My blood pressure cuff goes off every half an hour and displays the result on the screen. It’s come back up with reflects how I’m feeling. If every session is like this I decide I’m going to be fine. If I knew then what I know now… but I’m getting ahead of myself.

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The machine finishes with a very musical tone. The nurse reappears and fiddles with the machine for a bit while asking me how I’m feeling. After a little while she starts dismantling my connection to it and asks if I’m ok to apply pressure to my arm. I say sure and she fits me with a lovely blue latex glove.

The various pieces of tape come off and I silently welcome my ant friends back when they revisit for a few seconds. Finally she pulls the needle out which feels remarkably similar to when it went in. I wonder if it’s in there long enough for the wound to start healing around the needle so pulling it out has a similar effect to putting it in. I ponder this for a minute which is a welcome distraction until the nurse tells me to apply pressure to the cotton (?) pad on the wound. She demonstrates a two-finger technique and shows me the right amount of pressure to apply. I get a vision of potentially spurting blood if I don’t do it right so I do my best to imitate her actions perfectly.

A few minutes later she gently lifts the pad to check I’ve stopped bleeding and then secures a very tight pad with a lot of surgical tape. It feels like someone is gripping my arm with excessive force. I listen to instructions to remove it first thing in the morning otherwise I’ll be left with a dent. A small chuckle later and I’m told to go and weight myself again.

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Standing after two hours not moving is a newborn-fawn-like experience. It’s not normally, but I’ve been pretty paranoid about doing something wrong so I’ve been pretty motionless for the whole time. I’ve since learned that it’s far less uncomfortable and not particularly dangerous to shift around in the chair periodically. As the two hours has gone to three and four that’s been even more important.

I gingerly put my sweater back on - it’s important that both weighings are with exactly the same clothes and pocket contents. Unsurprisingly it’s gone up a little bit thanks to two hours just sitting there doing nothing.

After telling the nurse that number I’m told I can go.

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On the way out I overhear another patient talking to one of the transport paramedics about their next treatment. I was told it’s Tuesday, Thursday, and Saturday this week, but it’s Christmas. For the two weeks over Christmas and New Year some days are shifted to avoid Christmas Day and New Year’s Day, and they do sessions on Sunday to make up for it.

So, my next treatment is on Friday. This suits us much better as the original plan was to be in Northampton until then before I was expecting to be back in Reading for Thursday night. This makes Mother very happy.

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In summary: not as bad as feared, not as good as it might have been. I think I’m going to be okay.