Day 5, all is still going well (well enough that a discharge on Friday is more and more realistic) but now I’m getting cranky from lack of sleep and fatigue (not the same).
Some people question the decision to discharge me 7 days post transplant. You need to realize that the symptoms of GVHD might appear anytime from now until a year from now. Since I am currently doing quite well, no side-effects other than slight nausea and no fever, they are not going to keep me in if I have nothing going on just on the off-chance that I might get sick. (It’s the same as calling in sick at work before you catch a cold – makes no sense.) Might as well be home, in my stuff, then come back every other day for tests, check-ups and transfusions. If I need to be re-admitted so be it. I feel the same now as I felt before the transplant, just taking a lot more pills, I’ll be fine. And think of all the sleep I’ll get once I get home. That’s my most immediate goal – sleep.
So not only am I sleep deprived (I don’t know how parents do it, chapeau to you or you’re just plain crazy!) but my blood counts are going down (again, as expected) which means my lowering hemoglobin is causing me to be fatigued. I’m just about 10 points from needing a blood transfusion which I suspect will happen in the next few days. It’s all part of the journey. I’m sure I’m the envy of all vampires – free blood!
Ok so here is a typical night. I’m tired in the evening but try to stay up until about 11pm so I can time my visits to the washroom. I take my sleeping pill at 11pm but come 11:15 I’m wide awake. Toss and turn for a bit, and fall asleep around midnight. A few minutes later the nurse comes in to check up on me which wakes me up. I fall back asleep and get woken up again (I know she doesn’t do it on purpose but I wake up nonetheless) around 1am to check on me and my hydration bags or whatever else needs checking up on. Come 2am I wake up to go to the bathroom. Fall back asleep then the nurse comes to check on me around 4am (which as you’ve guessed by now, wakes me up). Fall back asleep then up at 5am for a bathroom break. By now, I know she’ll be coming soon for blood work (anytime between 5am & 6am).
Often I ring to let them know I’m awake and can they please do the blood work now. Sometimes they are too busy when I wake up and I have to wait my turn. If I’m lucky I’ll get the blood work done when I’m awake. If not, I’ll fall back asleep only to be woken up again 30 mins later. The nurse last night was very sweet however, if she sees I’m awake she tends to say hello. I don’t want to say hello because I don’t want to fully wake up.
Naturally, since blood work takes longer, she proceeds to have a full conversation which fully wakes me up. I get back to sleep around 6am or 6:30 but only until about 7am when the new shift comes on. I’m close to the nurses’ station so I hear them come in. It’s the beginning of their shift, they chat amongst themselves (as we all do with our co-workers when we get to work), say goodbye to the night shift nurses and begin their day. Ok, I’m awake now. I lay in bed for a bit, not too long since I’m due for a bathroom visit. By then, might as well wake up fully and get on with my day.
I put the kettle on, prepare my coffee in my French press, go to the kitchen for milk, grab towels, come back to my room and have my coffee. The nurse will come in between 8am & 8:30 for vitals, weight, see how the night went, etc., and give me my counts. Cleaning staff usually come around that time as well. Around 9am breakfast arrives. Food here is always a crapshoot. We select our menu at breakfast for the next day. Sometimes we get what we ask, often we don’t, and sometimes we get the generic meals. So every meal is basically a surprise.
Between 9:30 and 10:30, the Resident will do his rounds. Same questions the nurse asked an hour before will be asked again, along with a quick exam. Later in the morning the Attending physician pops by and asks all the same questions again, but no exams. He tells me what the overall picture is regarding how I’m doing and what’s to come. He’s the one who gives good or bad news and answers all the tough questions.
Ok so now I have some time to write or take a walk. If I take a shower I need to coordinate with the nurse as she’ll have to cover up my line dressing, disconnect me and reconnect me once I’m done. Between 11am and 11:30 she comes by for vitals. Come 1pm, lunch is served. I get free time in the afternoon should I wish (or be able) to take a nap if there are no visitors or a few laps around the unit. Around 4pm vitals are done again. Dinner at 6pm, then evening visits and a few laps (if I feel like it). Night shift starts at 7pm so by 8pm I see my night nurse and we go through how the day went and do vitals again.
This my friends is a typical day at the hospital if I’m feeling well and nothing out of the ordinary happens. For those that are sick, it’s a whole different picture with lots more tests, more vitals and more docs and nurses visiting on top of feeling like hell.
My nausea is a little worse now, so we’ll catch up tomorrow.
Ciao!
Marie-Chantal
