2/28/2020 Out of the hospital but not out of the medical time-suck
Haven’t been able to write until today because today is my first afternoon off since I got out of the hospital. I have been going to the clinic (regular SCCA appts in South Lake Union) every morning--including weekends--around 10 am, receiving a blood draw and then waiting for counts to come back to see what blood products I need that day. I see the Blue team once a week, but many days I wait for the triage nurse to tell me my counts. If I need platelets or red blood cells, they then set up an appointment, usually around 2-3pm. This gives me an awkward 2-3 hours. Not really enough time to come home, but a lot of time to sit around the clinic. Once I went out to eat nearby, but usually I just eat in the clinic and then wait it out. Once I reach my appt time, I go to a room and the platelet bag (i usually just need platelets) is called to the floor. Then brought in and hooked up to my Hickman. From there it’s two more hours before the bag is done and then a flush, and then a 20 min wait for a post count. And then I am free and ready to be driven home in rush-hour traffic. Somedays I need two bags of platelets and then I get home closer to 7pm.
Once home the fun doesn’t end, I need to immediately hook-up to my magnesium IV bag in order to finish before bedtime (It had been running over 3 hours, but now it’s down to two).. Then after dinner I have 11 pills to take and I give myself a shot of GCSF in the abdomen to stimulate my bone marrow. Now I sit on the couch and wait for the magnesium to be done. When I hear the final beeping, I remove the tubing, flush my line, and clean up all the trash I created. Before bed, I rassle my ted hose off to let my feet breathe and put in my eye gel that makes it hard to see. Then the normal brushing routine and I can get in bed! It’s a lot to remember and makes me a little wistful of the hospital where they took care of what pills you were taking and when. It’s an onus to be in charge of it, that’s for sure. Meanwhile my feet have been so swollen I hobble around the house, and can’t be very helpful for tidying or chores or cooking. Luckily, between Bree, Peggy, and my mom, they are helping out with food and care. Hopefully as my counts get better I won’t need to spend as much time in the clinic. I can’t wait for that first day off. Wow. What am I going to do?
In other news, the red-flowering currant is starting to flower in my native pollinator garden! It didn’t flower last year, so I’m really excited that it is this year. One Douglas Iris has also bloomed, another beautiful plant.
Once home the fun doesn’t end, I need to immediately hook-up to my magnesium IV bag in order to finish before bedtime (It had been running over 3 hours, but now it’s down to two).. Then after dinner I have 11 pills to take and I give myself a shot of GCSF in the abdomen to stimulate my bone marrow. Now I sit on the couch and wait for the magnesium to be done. When I hear the final beeping, I remove the tubing, flush my line, and clean up all the trash I created. Before bed, I rassle my ted hose off to let my feet breathe and put in my eye gel that makes it hard to see. Then the normal brushing routine and I can get in bed! It’s a lot to remember and makes me a little wistful of the hospital where they took care of what pills you were taking and when. It’s an onus to be in charge of it, that’s for sure. Meanwhile my feet have been so swollen I hobble around the house, and can’t be very helpful for tidying or chores or cooking. Luckily, between Bree, Peggy, and my mom, they are helping out with food and care. Hopefully as my counts get better I won’t need to spend as much time in the clinic. I can’t wait for that first day off. Wow. What am I going to do?
In other news, the red-flowering currant is starting to flower in my native pollinator garden! It didn’t flower last year, so I’m really excited that it is this year. One Douglas Iris has also bloomed, another beautiful plant.
First flowers on the red flowering currant
an old flower on a Douglas iris
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| Red elderberry planted this fall has leaf buds! |
Wow. I find myself grateful for the umpteenth time that you are immensely capable and can take on being both the patient and the doctor in these outpatient times. (And right behind that thought is always wtf do more “normal” people do?? Obviously the medical field is at once amazing and one that has soooo much room for improvement.) Anyway...glad things are plugging along and really really glad to see those spring flowers!! Thanks for the update.
ReplyDeleteOpening this post to the beautiful latticed-backed red current photo and juxtaposing it to the description of your task-filled, yet boring days speaks to your ability to find spots of color midst these days of physical pain and mental stress. Come spring, your investment in the recovery of your health and your garden will PAY OFF big time.
ReplyDeleteOy. That all sounds too familiar, Derek - but also so long ago and far away. My wish for you and your family is that 10 years from now these long days will all be just a distant memory for you, too. Please keep Alan and me on your list for mid-day company at or near SCCA and for rides home from SCCA - we'd welcome the opportunity to sit in rush hour traffic with you. Love to you and Bree.
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