Kidney failure: a partner’s perspective

Depending on their age, people tend to remember where they were when Kennedy was shot; when Neil Armstrong walked on the moon; when the Berlin Wall came down; and when aircraft flew into the Twin Towers. I remember the morning of Monday 14 March 2016, in a dingy corner of St George’s hospital in Tooting.

We knew that Stacy’s kidneys were functioning at only 2% – A&E had told us nearly 10 hours earlier. Now, in the renal ward, the consultant is saying “Now, you’re probably wondering if there’s anything we can do about it…”

I’m suddenly aware that I’m holding my breath. Basic rules of speech dictate that the pause can have lasted no more than a second but in my head it went on for several minutes. “… and unfortunately there probably isn’t.”

And that was that: through the night I’d glibly told Stacy that it couldn’t be anything to worry about – she’d walked in there ok – and she’d prayed that, if only this could be all right then she’d be good, eat healthily, take care of herself … now we knew that no one had been listening. At the time, I didn’t know what it all meant; but I was pretty sure nothing was going to be the same again.

Hello everyone, my name’s Andy and I’m Stacy’s partner of 4 years, 11 months and counting. Stacy’s temporarily given over her blog to me so that I can do my best describing life as a relative of someone with renal failure.

I’m not actually sure that I’m the best person to give this insight as I doubt that my experience is typical. Truth be told, Stacy makes it easy for me. She does much better with this than I would have done in her place. The main thing is that she has never wavered from the belief that she will come back from this better and stronger. I have met people (not necessarily kidney patients) who never seem to truly believe that they will recover from their ailments – but that is not a thought that we entertain. Stacy is totally focussed on getting well enough to travel.

Perhaps this is best exemplified by the fact that my 32nd birthday fell the day after Stacy was discharged from hospital: and a whole load of presents showed up in Amazon boxes. Apparently you can still shop from a hospital bed.

So I was lucky to have someone as strong as Stacy. And I was lucky to have a supportive employer: take a bow Hymans Robertson LLP. I read a stat somewhere that the vast majority of people with chronic health conditions live in poverty: thank heaven that was not something we had to contend with. I was allowed to work from home every Tuesday and Thursday so that I could drive Stacy to and from dialysis. In addition, I had countless ad-hoc working from home requests approved at short notice so we could attend any number of tests of consultations. My bosses’ unwavering attitude was “just go – and make up the time when you can” – superb. Had I still been working for some of the FTSE100 companies – or even some of the large public sector organisations – who I have worked for in the past I do not think I would have got anything like the level of support and I completely appreciate that 95% of people in my position are not as lucky. I will forever be in Hymans’ debt.

And, despite all this, it still got to me. The most memorable occasion occurred when Stacy was in hospital following the initial diagnosis. It followed one of several NHS mess-ups, the details of which I won’t bore you with. Shortly afterwards I was coming back from getting my lunch at Tooting Broadway station. As I pressed the button on a pedestrian crossing I saw a cyclist look around and assess the situation and I knew what was about to happen.

“It’s a red light, mate.” I shouted incredulously. He sailed on through. I screamed expletives after him and collapsed in tears by the side of the A24. This must have looked pretty bloody odd to the cyclist: a grown man in tears over a minor, not-at-all-dangerous infraction of the Highway Code. I’m not sure that I can fully explain it now, but at least it happened well away from the ward so that I could at least maintain the pretence of being strong in front of Stacy.

Of course, the initial period following diagnosis is by far the most stressful, and things settled down into a routine fairly quickly. And together we got through it. It’s only now when I look back on it that I realise how tired I actually was. I guess there might be practical reasons for this: trying as I had been to frantically finish some piece of work and race over to the dialysis clinic, whilst wondering when I was going to make up the time taken to attend a meeting with the consultant in the morning. But then again, why am I complaining? – it’s much worse for the people having dialysis! I think actually that the most tiring thing is just the worry: from the immediate worries such as when Stacy’s throwing up during dialysis and you want it to stop, through to the long-term nag at the back of your mind that you can never quite get rid of: what if this is a battle that we ultimately end up losing?

I think I might actually have been cracking up by the end of 2016. I went through a phase of being able to find deep meaning in the lyrics to pretty much any song, as if the writers of pop songs were actually ancient philosophers. To demonstrate how absurd this was, consider the lyrics to “Sit down” by James:

“Now I’ve swung back again

It’s worse than it was before.

If I hadn’t seen such riches

I could live with being poor.”

When I heard this song on the radio one December morning I actually interpreted it as meaning that if I’d never known what a vibrant, vivacious, confident and fun person Stacy was when we met in 2012 then it would be easier to cope with seeing her on dialysis. I suspect that this probably isn’t the meaning that James were going for when they wrote “Sit down”.

You have to work really hard not to let the kidney failure take over everything. In some respects this is inevitable: it’s difficult to go away on holiday when there’s a maximum of 3 days between dialysis sessions (you can get dialysis whilst on holiday but we could never face the admin involved). But we definitely were guilty of having too many days where we let our conversations drift back on to medical stuff. It would probably have been better for both of us if we’d had a few more days where we just completely blocked it out. I think I’ll always feel slightly guilty that I went to work as much as I did and never switched to part-time. Of course I justified this to myself by saying that we needed to pay the mortgage, and needed to save so that we can travel when Stacy eventually gets better. But deep down I know that there’s part of me that was grateful for those 8 hour periods where I could distract myself by thinking about the merits of using commercial mortgage loans to support annuity liabilities, or whether a proposed course of action was in accordance with the Solvency II rules. I feel guilty because Stacy (although, amazingly still working full-time) was never able to get this level of distraction: on the contrary, she struggled to concentrate on work because kidney-related thoughts would refuse to be displaced.

On a slightly lighter note: the whole episode really brought out my inner geek. Not only was it fascinating listening to the doctors explain the science behind what was happening (kudos to the medical profession – they really are good at explaining technical stuff to the layman), but I also developed a bizarre interest in how the hospital worked. I really wanted to know things like how an SHO differed from a registrar, how was a sister different to a matron, what was the demarcation between the responsibilities of the consultant and those of the specialist anaemia nurse? I guess everyone needs a hobby!

Chronic kidney failure definitely affected our relationship, but the overall effect was actually very positive. After 4 years I reckon many couples start going on fewer dates, developing their own interests and generally spending less time together. We obviously ramped up the amount of time we had together by ourselves: 5 hours 3 times a week at dialysis for a start. When I start writing this down it looks as though this could have made us or broken us, but that is a thought that never occurred to us at the time. I loved those times maybe 2 or 3 hours into a dialysis session when Stacy would say to me something like “I was reading this article in the Guardian about XYZ, what do you think of this issue?” and before we knew where we were the machine was pinging to signal that the session was over. We probably had more in-depth discussions about society, politics, science and religion at the dialysis clinic than anywhere else.

The nurses normally refer to Stacy has my wife, and I’ve long since stopped bothering to correct them. It’s tempting to say that we’ve already fulfilled one-third of the marriage vows without ever saying the words. But I do not want to appear triumphalist here for a second: we have been immensely fortunate in so many ways to get through this – particularly with Stacy being a fundamentally strong person. I will not be issuing the challenge of “bring it on” to “for better or worse” or “for richer or poorer” – I just hope that fate can leave us alone for a bit!

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mykidneyfailurejourney

Thanks so much for reading. I never know what to write in these things. I am 30, Scottish, living in London and going through a rollercoaster time of sudden kidney failure, dialysis - and hopefully a transplant some day. I set up this blog to share experiences of all things kidney. I hope this blog will continue to have a glimmer of positivity through the darker moments and that such positivity can help others too. It has helped me so much to write this blog and I thank you immensely for taking the time to read it. . Please join me on Twitter: https://twitter.com/mydarnkidneys

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