Day +19 - Getting Used to Being Home Again

Good Morning,
Today is Day +19 since my transplant.  I have now finished my first weekend at home (3 nights).  It has been so nice to be home.  There is a certain peace you feel in your own home that truly can't be appreciated until you are forced to stay away for an extended period of time.  There is a quiet and solitude that just can't be duplicated any other place.  During both hospital stays I always thought that PMH was a very quiet and peaceful hospital, especially the last stay being in a single room.  There was fairly loud fan always running in my room which filtered all that air that actually got to me and kept a constant positive pressure of air against my door so when it as opened any air bourne germs would be shot back into the hallway. This fan never bothered me until my first night laying in my bed at home when I realized how quiet the room was compared to the hospital. 

The first couple weeks of being home is always an adjustment. First you have to relearn to balance your energy levels.  It is very easy to overdo it at home because everything is so much more familar.  So I have to be constantly cognisant of my energy levels.  I need to push myself each day so I continue to get stronger but not to the point of exhaustion.  So far I have had a little more energy than when I got out of induction but I am sure my energy will be a yo-yo from day to day just like before.  There has been a small thing to get used to which has been wearing jewerlley again.  Both times in the hospital I took everything off and kept it off until discharge.  It starts because when you go through the heavy chemo you can swell and jewellery is dangerous and this time around in radiation you can't wear anything in treatment.  Since I have been discharged I have put back on my medic-alert, engineering ring, livestrong bracelet, and added another bracelet to the mix.  Leukemia and Lymphoma society has a Relentess Red rubber bracelet that I wear now.

The truly largest thing to get used to being home is medicine regime. My pill schedule is actually very complicated, especially in the morning.  I pretty much am swallowing different pills or medicine from 6am to 2pm at 2 hours intervals.  Yes that is right I have to set an alarm at 6am to get up and take my pills.  Some days I can back to sleep, others I can't.  The main reason for this is I am prednisone (a steroid) to help control some GVHD I developed in the hospital.  I developed a skin rash which is completely expected but they use steroids with the immunosuppresants so the GVHD doesn't get to out of hand and start attacking my organs. The main side effects of steroids is they make you a little more peppy so sleeping can be hard, hungry (although this go around isn't as bad in this department). In addition, in induction the prednisone caused me to become diabetic so now that I am back on it I have to check my blood sugars twice a day.  This dose isn't as high as induction and I seem to be being able to control my sugars through diet so far but it is still extremely annoying to prick your finger twice a day. Hopefuly they will taper back the prednisone soon as the rash is going down. Over the 6 months to a year the doctors will continue to play with my immunosuppressant doses to get me off of them and the new cells happy in my body but wih GVHD flare ups they will have to increase doses until they are controlled.  Should be an interesting year of keeping track of my medications.  Thank god for blackberry's calendar and reminders it really helps keeps everything organized.

Tomorrow is my first outpatient appointement so not sure if I will be able to post tomorrow but I will update how it goes. Hope you all have a wonderful week this week.


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