A few things before we begin: while I chronicled everything that happened in one 24 hr period, some entries are daily occurrences These entries are noted with a double asterisk. Also, I broke it up into three separate posts, so it's a bit shorter! Just start reading with this post, and move on to the next two!
Things you'll need to know:
Vitals-Blood pressure, temperature, and pulse-ox measurements. Scheduled to be taken every 3 hours; when you are receiving transfusions, taken every 15 minutes.
Pole- there are three different units on Pole, which works out to nine different infusion pumps. They beep for many reasons...
a) Syringe empty
b) Infusion complete
c) Pain medication nearly empty (2 hours left)
d) Air-in-line (extremely temperamental, can go off in 2 minute intervals)
e) Occluded line
f) Low battery on one of the 3 units
Except for the last one, a nurse has to come and fix it. The beeps are loud and sharp, and sometimes can be a real nuisance to both patient and nurse. Nurses should get an award for dealing with beeping IV pumps. Go Nurses!!
Emesis-I haven't recorded every single bout of diarrhea or vomitting, just the major ones. Something comes out one way or the other usually every 45 minutes. I know it's kinda gross, and I didn't want to include it, but my sister said that then I wouldn't be presenting an accurate picture. She's right, I guess.
A Day in the Life of an Autologous Bone Marrow Transplant Patient
The high doses of steroids I received on chemo have made me temporarily diabetic. I'm on a constant insulin drip, so I test my blood sugar every 4 hours.
|Half-asleep with a temperature probe under my tongue|
The chemo has coated my mouth, so that my taste is greatly altered. For instance, apple juice and yogurt taste spoiled to me, and fish crackers tasted like cardboard. It's really difficult to eat when everything tastes so weird.
|Checking my sugar- by now I can do while mostly asleep|
|Even the tastiest of treats can taste bad with chemo|
**5AM-Wake up to find I had a bout of diarrhea. Wash/clean up. Nurse comes and gets vitals, along with weight. Exhausted collapse back into bed. Two minutes later, say hello to the juice from 4AM.
The past few days I've only been puking about 4-5 times a day! Which is an improvement from earlier this week, when I was puking every other hour. My throat is really raw, which makes throwing up really painful. Also, because I don't eat anything, there is practically nothing to bring up, which triggers painful stomach cramps.
6AM- Wake up to find nurse accessing my Mediport, because I have a fever. Start two new antibiotics for the fever.
So far, they've only been using my tri-fusion catheter. Protocol demands that the Mediport be accessed when you have a fever. Blood cultures are drawn, to make sure the fever is not the result of an infection, but broad-spectrum antibiotics are started as a precaution. You are confined to your room until you have been fever free for 24 hours.
**7AM-Wake up to find Doc Brown making his daily visit. Answer his questions and show him my mouth, all while still half-asleep.
Dr. James Brown is the pediatric resident assigned to me, and he is a very caring doctor. He finds out about what went on in the night, and if there are any new issues or complaints that I have. On rounds, he will present my case to the oncologist.
|Doc Brown, Mr. Smiley, and me|
I brought a suitcase full of my own clothes, including shirts, skirts, hoodies and cardigans, scarves and socks, and night clothes. I didn't bring any t-shirts, only button-down tops, because it makes accessing my tri-fusion catheter and Mediport so much easier. I find that being in 'normal' clothes (versus hospital gowns) makes me feel much better, not to mention hospital gowns are usually too small for me :) It's important to me to change each day, to feel fresh and ready to face the day. There are laundry facilities in the ward, and my family washes my clothes periodically. I also brought some of my own blankets and pillows, to make it feel like my own.
**9:45- Join my medical team for rounds.
"Rounds" happen every day, including weekends, and each patient is visited. The attending oncologist and fellow, nurse practitioner, resident, social worker, and various other medical professionals are all present. The assigned resident presents the patient's current physical condition. Any issues, complaints, or concerns are addressed; blood work and medications are reviewed. It is a chance to present everything to everyone at once, and generally make sure everything is in order.
|On Rounds...notice how packed the hallway is!|
|Dr. Brown presenting my case to Dr. Petrosiute|
10AM- Come back from the bathroom, and collapse on the bed with a racing heart while feeling dizzy. Within minutes, I'm surrounded by 2 nurses, 3 doctors, a physician assistant, nurse practitioner and my mother, all extremely worried. My blood pressure is dangerously low, my limbs are swollen, and my hands are tingling. After several minutes, my heart rate begins to slow, and I fall into a deep sleep, surrounded by my amazing medical team.
10:45- Because of what happened earlier, the doctor has ordered an EKG. The tech arrives and I get one done, while still in my bed.
**11:30- The cleaning lady arrives. She comes every day, and cleans the whole room. I love a clean room!