With great “power” comes great “responsibility”

The day that I left Auckland hospital things began to immediately feel very different. I was given strict instructions:

  1. Drink roughly 3 litres of fluid (mostly water) everyday
  2. Be at Auckland Hospital everyday at 7am for daily visits to the kidney outpatient clinic
  3. Complete daily blood tests (roughly 10 tubes at the start)
  4. Become familiar with the smorgasbord of immunosuppressant tablets- that are to be taken at specific times (never missed)

The day that I was discharged came at a shock to me. Like this entire process my body has been working one step ahead of my mind and it was healthy and ready to leave in ONLY 4 days post transplant (I’ve usually stayed in hospital with headaches for 2 weeks). So you can imagine my horror when the doctors said I would be safer at home in isolation than in a hospital and my bloods were perfect.

There were a number of factors that I was balancing at this time that to most people wouldn’t be influencial. For example my mother was very sick at home and was asked to move to my sisters place to avoid me catching anything. Secondly, my dad was the only person around to take care of me and he was juggling work in the middle of this, thirdly no one was going to be there to hold my hand and make sure I took care of this kidney correctly- and previous moments of my life have shown I can handle responsibility but never when it comes to myself.

I’ve messed up a lot and there are countless times I could have prevented being ill just if I had taken better care. I have no regrets about how I choose to actively live my life, pushing my boundaries every day, but stepping out of the ward with the weight of several peoples expectations and standards on your back (or in my case my stomach) is daunting.

I knew there are so many ways that I could completely fuck this up, multitude of manners in which my general ‘being’ could ruin the best thing that has ever happened to me- add this pressure to my denial that a transplant even successfully worked and you wind up with a very distorted and confused young adult.

So there I was leaving, 4 days later with this massive bulge in my stomach and about a thousand new responsibilties. Like most things I doubted myself but it was almost like being thrown in the deepest of deep ends I had no choice but to do what was needed and worry about what could go wrong much later.

I developed a routine, I will explain to you at a later stage the effects of all the drugs I was on which left me awake at night running around in circles -but there were a few things I quickly learn’t to do which stopped me from having a mental breakdown.

  1. WALKS- I began to walk everyday at least 12,000 – 15,000 steps as painful as it was to move I held my little kidney and we walked at home and outside. I’m putting together a list of my favourite Auckland walks so you can try these yourself
  2. EXERCISE- as soon as my two month mark hit I was back doing every single workout I could find that doesn’t exert your lower abs (where my kidney is), and by three months I was back into a full workout.
  3. WATER- I drank water like a war was coming and it was about to be scarce. Chug Chug Chug, I challenge you to 3 litres a day, its not easy.
  4. CONTROL- try not peeing properly for 5 years, I had to teach myself how all you other folk go to the bathroom and my oh my peeing sucks. I have no clue how you people do this and how you manage public restrooms..
  5. SLEEP – as a dialysis patient and as ‘Denny’ I never used to sleep, night time as James Franco says is the time for creativity and work those who sleep achieve less. So for years, I gave myself insomnia and 4 hours of sleep a night was my average. BUT I’ve come to appreciate that sleep is vital so even if my drugs won’t let me sleep at night… I exert myself during the day so that exhaustion lands me asleep on the couch, the car, the waiting room I take what sleep I can get… I’m now a sloth.
  6. MOVIES (Netflix) – you name it, I have either tried to watch it or finished it. There’s not much else you can do when you are NOT allowed visitors and your dog partly hates you.
  7. BOOKS- this is a lie, I bought a thousand and with al my energy I couldnt even sit for 20 min long enough to find out what the book was about. My goal is to get through something … eventually.
  8. STUDY- YES, that’s right, as mental as I already seem I couldn’t let go of being at uni… so post discharge I began two papers at uni for that semester which were recorded for me. I studied at home cause I couldn’t handle not doing something productive… no joke though best grades I’ve gotten at law school (should isolate myself more).

 

This routine had to last me a decent 3-4 months while my body was slowly adapting to this new kidney and to prevent me catching any bugs from anyone else. It was not fun being away from everyone and living in the shadows of my drawn curtains planning all the things I would do when it’s over.

But now looking back there are some days I wish I could go back to isolation – recoup and figure out what I want to do and what is important. I suggest even though I’m no good at this- that anyone who reads this should try this for a day or two… shut down and isolate yourself to get some perspective BUT also to rest your body. I don’t think only people who have had major surgery could use some rest.

 

Next Week Wednesday- Life post-transplant

Denny