Published on March 16, 2020
This is Part 2 of my stem cell transplant blog. I am 130 days post-allogeneic transplant, still 44 years old and skinny but now sporting a peach-fuzzy head. My personal MPN journey is set out in past Patient Power blogs and videos. In short, I was diagnosed with ET at 26, PV at 29 and MF at 43. I chose to undergo a Matched Unrelated Donor (MUD) transplant after careful deliberation with my medical team, particularly after learning that I developed genetic mutations (SRSF2, EZH2, TET2) that indicated an aggressive disease state. Part 1 of my blog covered preparing for the stem cell transplant. This Part 2 covers the hospital stay. Part 3 will focus on at-home recovery.
Part 2: The Hospital Stay
I spent approximately three weeks in the hospital for my MUD transplant. The first week was spent undergoing fully ablative chemotherapy (busulfan + fludarabine [Busulfex + Fludara]).
I then received my transplant donor cells, followed by two more days of chemotherapy (cyclophosphamide [Cytoxan]) to help prevent graft-versus-host disease. The next two weeks were a waiting game while my body accepted the new stem cells and began replicating healthy blood cells.
My hospital summary notes reference something innocuous sounding, such as: patient tolerated treatment well. And at the most basic level, that is true. I did not suffer any catastrophic events during my hospital stay, nor did I encounter anything that my medical team considered unusual. That doesn’t mean it was easy.
The daily schedule is full of visits from medical staff. This occurs at all hours, day and night. Their primary goal is to lay eyes on the patient on a regular basis to make sure the medical team is prepared to handle any problems before they take root. The nurses also administer medication or blood products while the PCT/CNA records vital signs.
Here’s a snapshot of my daily schedule after chemo ended.
7 AM – nurse shift change where they introduce the new staff for continuity of care
8 AM – vital signs with weigh-in [might as well get up, shower, get dressed and order breakfast]
10 AM – morning medicine and nurse check-in, doctor rounds [time to go for a walk]
Noon – vital signs [try to eat again]
2 PM – nurse check-in [take a nap]
4 PM – vital signs
5 PM – afternoon medicine and nurse check-in [walk again and order more food; enjoy visitors]
8 PM – vital signs
10 PM – night medicines and nurse check-in [go to sleep wearing an eye mask]
Midnight – vital signs
2 AM – lab draw from CVC
3 AM – start IV replacements of fluids and blood products
4 AM – vital signs
Add to that, there are drop-in visits from housekeeping, occupational therapy, physical therapy, volunteer services, the chaplain’s office and room service coming in with food and then coming back to take the tray. The IV machines chime alerts at all hours when the bags need to be replaced, when there’s air in the line, when the line becomes pinched, etc. The hospital stay is a non-stop cacophony of people, light and sound.
I went into the transplant process full of confidence. After all, I am young, healthy, prepared and a prime candidate for transplant. Yet at several points during the course of treatment, I told my family that I was so tired, this was much harder than I expected, and I just didn’t want to do it anymore. I struggled too with the loss of control over my own life. I reflected in my journal that I missed doing the little daily things that were mine. “Shower? Now I need to find someone to help me with my CVC bandage. Quiet time? Now it’s all: how do you feel, no really, how do you feel?” I missed myself and my regular life. My family stuck by my side, encouraged me to eat, sleep as well as I could, and get up for some daily exercise. The power of being positive and focusing on the next milestone cannot be overstated. When you experience those low moments, rely on your caretakers and nursing team to get you through it.
With some basic safety precautions in place, you can have hospital visitors. Many hospitals allow one overnight visitor to enjoy the room’s ever-so-comfortable pullout couch. Healthy visitors (that you approve) are welcome so long as they wash their hands before entering your room and they wear gloves and a face mask (both provided by the hospital). It’s nice to have a visitor in the afternoon to break up the day with a new face. But if they or someone they’ve been around has a cold, the flu, a fever or any other potentially communicable sickness, then they cannot be at the hospital at all. Rely instead on Skype or FaceTime for those face-to-face interactions.
Not everyone handles sickness well. Some family members and friends may send you their thoughts and prayers once, and then you may not hear from them again. Others will like nothing better than to see you in person. Don’t worry about looking sick or being seen bare-faced and bald. If someone in your tight circle of family and friends is willing to brave the hospital garage, wind their way through the maze to your floor, and then don gloves and a mask all just to see you—then let them in. It will do you all some good. Be sure to ask them to bring something for your caregiver to eat or drink. You may not want anything, but your caregiver will get bored with Styrofoam cups of coffee and dry sandwiches.
I suffered from the same set of problems that many cancer patients experience. The chemo made me intensely nauseous. I vomited often and faced rotating bouts of diarrhea and constipation. I also suffered from a mild case of mucositis—"mild" meaning that it only lasted about a week, but still caused intense pain like a sword of fire shoved down my throat. Eating became not only physically repellant because of the mucositis and nausea, but emotionally, I simply did not want to eat anymore.
Everything tasted awful from the chemo, and I was nervous because I never knew when I was going to vomit it right back up. This is when patients often turn to liquid supplements instead of solid food in order to stem the weight loss.
More seriously, but still common, I ran a fever for several days post-transplant. This required an initial treatment of ice packs settled in under my arms, at my groin and around my feet as well as a cooling blanket on my bed. The chemo resulted in chemical burns to my groin and perineum areas. For men, this effect can show up on their scrotum. It is as intensely unpleasant as it sounds. Be honest about it with the nurses, and they’ll keep ordering different ointments for the patient to apply to help manage the pain.
I also lost all of my hair (yes, all of my hair) over the course of 2 months. The hair on my head fell out about 2 weeks after chemo ended, followed by the rest of my body hair over the next month. Oddly enough, I kept my eyebrows and eyelashes until about the third month, then they fell out too. What I didn’t know is that hair falls out in patches, like mange on a dog. I thought my hair would just slowly thin out over a couple of days. My family and I were quite surprised at the actual process. Once the bulk of it was out, my caretaker sister used an electric razor to trim up the little bits that still clung to my scalp.
Listen to Your Nurses
Perhaps the best advice I have to offer is this—listen to your nurses. The nursing staff has years of experience with stem cell transplant patients. Some of my nurses had been working the transplant floor for over a decade. When they ask how you’re doing or whether you need something in particular, they’re asking for a reason. Whatever problem you’re having, they’ve seen it before and know how to handle it before you even know that it is a problem.
Here are some of my examples. Just after my fever started, my nurses asked me if I wanted to move the portable toilet close to my bedside. I was horrified and said of course not! Within 24 hours, I was so weak that I couldn’t make it all the way to the bathroom and needed the bedside toilet.
Just when my mouth began to get thick with spit and my throat was a little sore from mucositis, my nurses asked if I wanted to convert my medication to all IV form instead of pills. I said, "Of course not." I could handle this! Within 24 hours, I couldn’t swallow anything, and the nurses had to push the pharmacy to quickly convert all of my pill medications to IV liquids.
When I found tablets too hard to swallow from the mucositis, my nurses asked if I wanted IV morphine. Again, I said, “Of course not!” In my mind, IV morphine was for “serious” problems, and I didn’t need anything like that. My nurses explained that the dosage was tiny and would help me tremendously if I took it now to get in front of the pain. Within 24 hours, I welcomed their suggestion and the little IV injections of pain relief.
I say all this, because it became evident with each episode that my nurses were a full step ahead of me. By the time I was preparing the leave the hospital, I took my cues from the nurses’ questions and commentary before making any decisions.
Overall, the hospital stay is manageable albeit not pleasant. This is the time period when you’ll need the most help to get through the days. During a rest period, I reflected in my journal on the rough days. “In those down moments, I despaired. In these now moments, I have greater perspective and can see the ups and downs that are coming. These rest days are critical. And for these days, I am thankful.”
Stay positive, be thankful for each day of rest, and listen to your nurses.
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
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