Month: January 2010

Progress

Just got back from the doctor. It looks like the drop in cyclosporin has helped my kidneys and the creatinine levels are going in the right direction. No GVHD problems so far either which is good. My steroid level is being reduced from 25mg to 20mg. Next week the cyclosporin dose will also be reduced if there are no problems. My blood levels are ‘good’ – whatever that is. I don’t want the gory details so I didn’t ask what the actual numbers were. Too much information gets me all stressed.

My Routine (updated)

I forgot to mention in the post on my daily routine that most of my time is spent telling the kids to behave!@#@^#

Once the little devils are back at school I can get back to some guitar and drum practice…and maybe some work from home for my employer :-)

Potassium

Saw the doctor today. My kidneys are having a little trouble with the drugs so they have dropped the dose of cyclosporin a bit to see if that helps. I also had 1 litre of potassium solution via IV – took 4 hours to get that into me. This extra IV fluid is also supposed to help the kidneys. I am drinking 3 litres of water a day but that does not seem to be helping.

My eyes are also having trouble with the steroid so it off the the eye doctor to see what is up with them.

My Routine

If anyone is wondering what my day to day treatment involves it typically consists of:

  1. Get out of bed.
  2. Check my blood sugar level and inject my morning insulin.
  3. Eat breakfast.
  4. Take some drugs: prednisolone (a steroid to prevent graft vs host disease), famciclovir (prevent viral infections), pantoprazole (prevent stomach irritation), magnesium.
  5. A couple of hours after breakfast I take some more drugs: voriconazole (to prevent fungal infections in the lungs) and cyclosporin (to prevent graft vs host disease).
  6. At lunch another insulin injection.
  7. At dinner another insulin injection and some more drugs: famciclovir and magnesium.
  8. Before bed some more drugs: voriconazole and cyclosporin.

Doing OK

Everything is OK at the moment. I now have blood tests once a week rather than twice a week. I visit the doctor once a fortnight rather than than once a week. My steroid levels are being decreased and there appears to be no GVHD.

Guitar practice is a little slow – my hands often shake quite a bit due to some of the drugs. It makes picking the strings a little hard as I can miss the string due to the shaking.