Now that I’m out of the hospital and home, at Day +85, I’m going back over my notes from my 27 days of inpatient stay. I thought some 'lessons learned' from both my transplants might be helpful to people heading into their hospital stays. Some of these are pretty important, and some are more my personal preference — take them as you will.
First, find out ahead of time what you can and can’t bring. For example, I wanted to bring my own pillow, but it wasn’t washable. So I endured plastic-covered, 1-inch thick hospital pillows. Had I been thinking, I’d have bought a new washable pillow for $10 and taken it with me. My comfort level would have been 1,000 percent higher had I done that.
Take plenty of clothes. I made it my goal, both times, to NEVER wear one of those awful gowns. One, they just aren’t comfortable to lie and sit in, and two, they make you seem sick. My goal was to approach this like I was well all along, and just treat it like a very expensive (and not too luxurious) hotel. I ran out of clothes the first time. My caregivers had to take them home several hours away, wash them, and bring them back. The second time, I took 10 days worth of shorts, T shirts (long- and short-sleeved) and pajama pants. Since the air conditioning in my room and the thermostat in my body cycled constantly from Sahara Desert to North Pole, I was glad for a wide variety of layers and lengths.
In the same vein, I made it a policy to treat my hospital bed like my home bed — I was only in it at night. During the day, no matter how sick I felt, I sat in the recliner with my head higher than my lungs. Sitting up is much healthier than lying in bed when it comes to avoiding pneumonia and for your general well-being. I might take a nap in the bed, but then I got back into the chair.
In an attempt at having some small control over my life, (see Well That Wasn't the Way This Day Was Planned
), I took the 'bed at home' idea a lot further — I had a nighttime and daytime arrangement of my room’s furniture. I had table with wheels, a round table with two chairs, certain medicines, my phone and charger, my computer, etc. that I set up for 'day use' and 'night use.' Each night, I put away my computer, straightened up papers and clutter, moved a table to my beside, re-routed phone charger cords, and most importantly, assured a clear path for me and my IV pole, from the bed to the bathroom while leaving the pump plugged in. Avoiding falls is job no. 1, and navigating a small room full of furniture while dragging a pole, two tubes and a power cord, was a clear danger.
Despite what I said about treating this like a hotel stay, I also was dead serious (literally) about adhering to the nurses' protocols. The key was to avoid getting sicker than I had to and maximize my chances of surviving. I was meticulous in wiping down my table with antiseptic wipes before I ate. That hated little plastic doodad you are supposed to breath into 10 times a day? Did it. When the physical therapy tech came in, I did everything they told me to do — daily, even on weekends when they were off. These were gentle exercises that kept me somewhat flexible and got my circulation going. The biggest was walking. During my first transplant in 2006, they encouraged me to walk once a day, out around the nurse’s station and back — about 50 feet. This time, they pushed us to walk at least a mile a day. That was 11 full laps, back and forth, of the entire ward. It was tedious and time-consuming, but what else did I have to do? I put on running shoes, gym shorts and a T shirt, and played music off my phone. Often I had my IV stand with me, and later on, a couple of times, a walker. But most days I did two to three miles, in three separate trips. Later, when I was at my sickest, I still did a mile a day, maybe in three or four sets of three laps each. I credit a lot of my fast recovery to that exercise. If you can’t walk the halls, or do a mile, at least lap your room a bunch of times every day. Keep score on yourself, on the room’s white board, and tell people you’re doing it to hold yourself accountable. Walk, walk, walk.
I had a lot of trouble working in time for a morning shower. Every time I headed to the bathroom to do it, someone would come in the room with an essential task. I finally worked with the nurses to give me the first 15 minutes of their shift (7:30-7:45 am) to shower, while they saw other patients. I liked to start each day with a clean body and clean clothes, and it helped me feel both in control of my life and healthier than wearing clothes I’d slept in. Once they knew what I was doing, the staff was great at giving me that time.
The same held for nighttimes. Hospitals are famous, as the old joke goes, for "waking you up to give you your sleeping pill." I understand the need to check vital signs regularly and I had IVs that needed to be changed in the middle of the night. It was usually three or four wakeups between 10 p.m. and 6:30 a.m., but one night it was eight! That evening, when the nurse came on shift, we had a talk. She and the tech and I mapped out a way for me to only be woken up twice that night, and it was wonderful! From that night on, I had the same talk with each shift (which were never the same combination of nurse and tech). Shower in the morning, sleep at night. Everyone was very understanding and worked with me.
The last item is a major safety check. Nurses should rigorously identify each medicine, every time you take it, even if you have the same one several times a day. Sometimes the same type of medicine may come in pills of different colors, shapes or sizes. As a proactive patient, you should ask every time you see something different, whether it's a pill, an IV, or a procedure. Even the best of hospitals make occasional mistakes and your job is to make sure it doesn’t happen to you.
This collection of odds and ends shows my split personality about transplants. First, to let it impact me as little as possible, while second, overdoing every aspect of treatment and protocol. It worked for me, and hopefully it will work for you, too!
Besides the other wonderful blogs on CURE
, I hope you'll also visit my Taking Vienna
site. I also recommend a new blog I have recently become acquainted with by T.J. and Jen Sharpe: Patient #1
. For cancer patients and caregivers, and melanoma patients in particular, it’s a great resource.