I decided to keep a diary of my stem cell transplant experience so it might help others in preparing for their stem cell transplants.
I thought you might be interested in a typical day in the life of a stem cell transplant patient on floors G17 and G18 at MD Anderson. I spent several days in the hospital following my stem cell transplant, a part of my chronic lymphocyctic leukemia (CLL) treatment. After a while, I developed a routine.
Mornings on G18
The patient day begins at 4 a.m. Yes, you read that correctly. Every morning at that horrible time, the night nurse comes in to draw several vials of blood. They do this for a very good reason. The complete blood count (CBC) numbers are a vital part of diagnosis and treatment. By drawing blood that early, our blood is first on the list for the lab to process. The results are back in time for the doctor in charge to read, analyze and make decisions when he or she visits later that morning.
The patient may then return to sleep ... until 6 a.m. At this time the nursing assistant comes in to take the morning vital signs. There were a few times I came really close to sleeping through this one.
The handoff from the night nurse to the day nurse takes place at 7 a.m. Both nurses come in to get acquainted if the day nurse is new to me. Now is the time to schedule a shower. The central venous catheter (CVC)must be covered and protected from water contamination. It is a process. I may order breakfast just before the shower.
After I've eaten breakfast, it is time to wait for the doctor and his entourage. This can be as few as two or as many as five or six people. The larger the number, the smaller the room feels. It does get crowded.
Afternoon on G18
Next comes lunch. The dietitian recommends that we eat five or six small meals a day because nutrition is important and a transplant patient's appetite is seriously affected. I often eat a few bites of a meal before I felt full Other times what looked good or even loved before became nauseating to me. I could never quite get into that mode. At 68 years old, my patterns are pretty much set, but give it a try.
Various activities are scheduled throughout the day to encourage the patient to get up and move about. Three times a week the physical therapists offer an exercise class. Don't worry about it. It is chair exercises, not jumping jacks. This class lasts one hour. Though the exercises are done sitting down, don't think they are all easy. I managed to complete all but one exercise, and I was plumb tuckered out once we departed. (The one exercise I didn't do was for modesty sake. I was wearing two hospital gowns, but they did not want to stay in place!),
Once a week, a music therapy class is offered. I wish I could tell you about it, but I can't. It was rare that I could leave the room. The one time I did make the class, I walked to the door and found a note saying music therapy was cancelled for the week. I didn't feel too bad. I had soothing music playing in my room all the time. I guess you could say I had my own 16-hour-a-day music therapy.
We are also encouraged to walk the floor at least three times a day. Each time we leave the room and walk at least to the front desk, we receive a slip of paper with a superhero on it to tape to our doors. (This was good for me since my oldest granddaughter is big into superheroes. I had to collect them all for her, which I did and started a second collection before I was released.) It's a part of the Motivated and Moving Program, an incentive-based program to get stem cell transplant patients up and moving.
After my first bad night, things evened out for me. My transplant engrafted early, maybe day +7. Confirmed by the doctor on day +9. This was very early, but not unheard of.
Because of the early engraftment, I was released on day +13 -- more than a week before my target release date. My doctor and nurses attributed it to my obedient nature. I think it had more to do with the excellent medical care I receive at MD Anderson, and the hundreds of prayers spoken by my family, friends and friends of friends.
Chronic lymphocytic leukemia (CLL) is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths.