It’s been a very slow and uncomfortable couple of weeks. I didn’t blog last week as I really didn’t have a lot to say. I discovered that at this stage of recovery, it doesn’t take much discomfort to for it to become a constant and all-consuming distraction. It took me to a place I wasn’t overly happy in and the best thing I could do was sit quietly and wait patiently. Thanks to everyone who messaged with treatment tips, particularly the mums who have been through childbirth… I’m happy to say that, after three weeks, the piles are much improved and I seem to have a bit of my joire de vivre back.
Aside from this literal pain-in-the-arse I am now at 12 weeks post-op which, from the transplant teams perspective, is a landmark in my treatment. Up to this point the nature of the immune suppression has been to use a sledgehammer to crack a nut. This is why I have been having to isolate. The world is a scary place for us all at the moment, but with zero immune system it’s positively terrifying. From this point on, the doctors will start the delicate art of reducing my medications to the point where I get some protection from external infection, while still protecting my precious kidney from rejection. I’ll always be at a heightened risk of catching things, but will be much better armed than I am at present.
I will also, hopefully, see a reduction in these annoying side effects. I still have the slight tremor (although this is much improved) so can’t do anything that requires a steady hand, like writing with an actual pen. I still have acne from the steroids and neither am I sleeping consistently well, so I am looking forward to the next phase. I do, however, have more general energy and week-by-week I can feel my strength slowly returning. And the fact that I have made it to twelve weeks post-op with only one kidney-related hiccup I am told is a genuine success. Not all recovery pathways are smoothly paved, so smiles all round. I still haven’t been for a run but that is on the cards for this week.
I also learnt that when I am not feeling good I forget to drink, so I have been having to focus on drinking more water. A couple of weeks ago one of my test results was a little abnormal and my nurse said that my blood seemed thick as she was taking it from my arm. I was clearly dehydrated and this was reflected in my EGFR and cratinine readings (being low and high respectively). Thankfully, after drinking three liters of water in 24 hours, a re-test revealed entirely normal levels. My diet also went out of the window. Being tired and generally disinterested I defaulted to black coffee and convenience foods. I am now back on my fiber-rich 5+ a day, although if you try and take my coffee away from me, I may have to kill you.
Laters…
#R24TRC 