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title: "How long have I got, doc?"
layout: post
image: 
    feature: header_ambulance.png
---
"End-stage renal disease is a terminal illness with a glomerular filtration rate of less than 15 mL/min." - [Hashmi et al.](https://www.ncbi.nlm.nih.gov/books/NBK499861/)

My current state is an estimated GFR of 7 with dialysis 5 days per week to replace my destroyed kidney function. But the basic fact remains that this condition is terminal; it's just the question of how long it takes to finish me off. Speaking with doctors is a difficult business on this. They don't like conveying bad news and prefer to give the optimistic estimates.

Nonetheless, the average life expectancy on dialysis is 5-10 years, but, [according to the National Kidney Foundation](https://www.kidney.org/newsletter/demystifying-dialysis-understanding-treatment-options-and-life-changes), "many patients have lived well on dialysis for 20 or even 30 years". It's also the case that the life expectancy statistics are skewed by the fact that many dialysis patients are much older when their kidney condition kicked in. Doctors have also stressed these upper bound figures to me, while cautioning that I am at severe risk from infections and that these pose the gravest risk to my life.

So, a reasonable life expectancy seems to be 5 to 20 years; quite a range! I am still adjusting to the limitations in my life, now, too. I must admit that I find it very painful to have to turn down speaking invitations worldwide because travel on dialysis requires months of planning and may not even be possible (and it's very expensive). I was very upset the other week to think that I could not go to see Moby's greatest hits concert in London, because I simply can't take the infection risk. In many ways, the life you get on dialysis feels somewhat like a half life. For instance, there are strict fluid restrictions and I can barely fit in my much-loved cups of tea. I constantly crave a (non-alcoholic) drink. It's a massively constrained life. But as the sinister Gentleman puts it in Susanna Clarke's _Jonathan Strange and Mr Norrell_: "better to have half a life than no life at all" (that may be only from the TV adaptation; I forget).

I also find myself extremely tired/fatigued these days. My stamina is much reduced and I find that I use my weekends predominantly for recovery, rather than writing and music-making, as I used to. This might improve once they get my hemoglobin levels under control. I am currently still very anemic.

In any case, I continue to adjust to having a terminal condition, although it seems that I may still be here for some time.