Fighting Fluid Retention on Peritoneal Dialysis Vol 4: The Downward Spiral

Fighting Fluid Retention on Peritoneal Dialysis Vol 4: The Downward Spiral
The Downward Spiral of Emotions when facing uncertainty

Hello Again!

The final instalment of this saga of me struggling through another change in my Peritoneal Dialysis prescription from my classic 2 Big Baxter Yellows and a half purple day fill to what feels like a whopping 1 Big Green, 1 Big Yellow, a mini yellow and more than half of a purple day fill.

In the summer of 2023, I experienced excessive fluid retention for the first time that impacted my weight, appearance and blood pressure.

In Volume 1: I describe and identify the tell tale signs of fluid retention which I wilfully ignored much longer than I care to admit.
In Volume 2: I exalt the physical upsides of having my prescription change on my body.
In Volume 3: I detail the tedious nature of having a heavier prescription in practical terms.

and finally we have come to Volume 4, which I have dubbed the "The Downward Spiral".

Where we had left off in Volume 3, I was already pretty down about the increased time to set up and clear the machine but over time even that became second nature and I was beginning to set up as fast as I had done when I was on my previous prescription.

However what stubbornly remained for the remaining months of summer was the downward spiral in my mental health.

For this reason, I have delayed writing this post to avoid unnecessary aggravation to my then very negative mood. However, we are coming to the close of 2023 and it's about time I put an end to this Saga.

For everyone's sanity, I will try to keep this as succinct as I can without too much embellishment and romanticising of the woes that I so inextricably felt at the time.

The Ugly
You could say that as soon as my physical needs were being met i.e I was no longer overloaded with fluid and my blood pressure was within an acceptable-ish range.

What remained were my never ceasing thoughts.

  1. Increased Cognitive Load - Anxiety and Rumination
    The change in my dialysis prescription was something I was keenly aware of as being a sign that my dialysis was no longer as effective as it once was. This drove a lot of anxious thoughts around my head as to why had my old prescription stopped working. I would dialyse every night ruminating all the small changes in diet, exercise, and exposure to other people I had done in the past months that could have led to the decline. It's fair to say that I would not get a good night's sleep. I would be awake at 3am to check the Drain and UF figures throughout the night.
  2. The Feeling of Impending Doom - Depressive Moments
    The feeling that if my prescription is getting stronger and stronger because it is becoming less effective...then one day, my PD will stop working entirely. I knew that PD had an expiration date and I was closing in on three years, which is definitely on the lower end of the estimate but not entirely impossible for it to become ineffective. This led me down a rabbit hole of "ifs" and "thens": starting HD in-centre, potentially learning how to do home HD, needles, another break from work and just generally moving further and further away from the life that I had already built up on PD.

    It's that sense of having to start from square one all over again.

    Moreover, I had honestly planned on getting my transplant from the NHS list before starting HD. I desperately wanted to preserve my veins as a young person with IGAN, namely it is a likely occurrence that my kidneys will fail again even post transplant! I very much hoped that not only would I get a kidney transplanted before my PD time had expired but also that perhaps I could go back on PD in the wait for my second kidney. Once again it raised a lot of uncertainty about the future of not only my health plan but what I could expect from life in the future.
  3. Placing Blame on Myself - Low Self-Esteem and Loss of Identity
    On realising the gravity of what would happen to my life if I had to switch from PD to HD, I really turned inwards in blaming myself for any excuse that I could find that would have impacted my dialysis.

    And there was one bleedingly obvious case. I contracted peritonitis in January 2023. I hadn't thought much of it because it was so mild and I had seen the signs incredibly early! I really felt no pain other than a bit of nausea from the antibiotics I received and the infection went away without much issue and I didn't think much of it.

    All the tales of peritonitis that led to the end of PD were always harrowing and lengthy in recovery. Mine was not. I had seen the signs of a cloudy bag and called the nurse that morning. It was gone in a matter in a matter of weeks.

    But I had pieced it together that it had to be that. I had changed nothing else in my daily life. My nephrologist had briefly mentioned it could have contributed but equally said that what I had was incredibly mild and in effect perhaps it could have just been the natural progression of the body and dialysis.

    It's funny how we can disregard completely sound advice and let our minds drift to the darkest places of self loathing.

The Ultimate Test of My Character: Perseverance, Resilience and Self Compassion

This dark period lasted until the end of the summer. I was physically weaker from the change in prescription and was more confined to my house than usual.

Everything in my life at that time took a hit.

I was in social isolation, struggling at work with increased appointment days and reduced energy. The uncertainty of the future dominated my mind and the ability to make plans for the future had once again vanished into a black emptiness like it had done when I first went into kidney failure.

The worst of it was that I was beginning to falter in the consistency of my dialysis set up and clean up. I would set up and connect later and later, which meant that I was starting work whilst on dialysis and leaving my room less and less. I was also becoming lazier in my clean up and emptying drain bags every other day rather than everyday. My Epo injections schedule became erratic.

It was all these small breaks in my routine that just led to an overall drop in my wellbeing and led to a great sense of loss in identity and self esteem.

I say this became a test of character because despite connecting later and not performing well at work as much I had hoped.

As tempting as it was to skip as the hours moved closer to midnight.

I always performed dialysis every night and that was enough.

In the end, I compromised every other aspect of my life (work, social, hobbies) to focus on getting my dialysis right and that was the only way I was able to overcome this dark period because it gave me the space to breathe.

Yes, perhaps 80% of the time I am still dwelling on dialysis but I was no longer competing with the stress of working extra hours to fulfil my task list.

For me that was a lot. To once again prioritise health above all else.

The self compassion to let go of the self blame and the unnecessary expectations that I had put on myself. This took time and therapy but I got there in the end.

Where Am I Now?
Despite publishing this post in December as part of my 12 days of blogging challenge. I first drafted this at the end of September, I was already beginning to feel a lot more settled on dialysis and had made my peace with the prescription change. I wasn't fighting the nephrologist anymore to put me back on my old prescription and was moving towards acceptance.

One thing he did say to alleviate my anxiety greatly was that he noticed that I was desperate to go back on the lower prescription for the wrong reasons.

He emphasised that if the dialysis prescription is not clearing the toxins from the body, then the dialysis is not doing its job. The side effects of having poor dialysis will inhibit you from living your life and the impact on your body is not healthy!

My Nephrologist

You are on dialysis for one reason and that is to remove the things that your kidney used to do. If the dialysis is not performing that role then there is no point in the exercise, regardless of how long the peritoneum lining will last.

From then on, I was more determined to continue on the stronger prescription without fear and impending doom. I suppose I was just in denial all Summer but by Autumn I had come round to the truth of the matter.

I was just another step along my kidney journey.

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IGA Nephropathy confirmed at 21. Crashed into End Stage Renal Failure at 23. Now, I share with the world my 3 years lived experience on Home Peritoneal Dialysis and Post Transplant Living 10/10/2023