Leaving the hospital after a stem cell transplant is a blessing. However, it is a little like a game of Russian roulette.
As a result, stem cell transplant patients have to take precautions that make sense but are sometimes not too much fun. Doctors and nurses advise us to wash our hands a lot, avoid buffets, wear hospital masks, not to eat fresh fruit or vegetables, be careful at restaurants and avoid crowds.
I had just one experience with an incident regarding my compromised immune system. It happened during my acutemyeloid leukemia (AML) treatment after my second round of chemotherapy and before my stem cell transplant. It resulted in a ride to the MD Anderson emergency room in an ambulance.
My temperature rose to 106 degrees, and doctors quickly administered antibiotics intravenously. My blood pressure dropped, and next thing I knew, I was spending the night in the critical care unit. I recovered in the leukemia ward for two days and was released.
Wearing a hospital mask: taking chances
I did not wish to repeat that scenario, so one would think I would have diligently worn my hospital mask everywhere. However, I took my chances on a few occasions.
I remember going to the park with my grandchildren shortly after my transplant. I had taken my mask off and then spotted a child wearing one. "If this little one can do it, so can I," I thought. I wore my mask religiously from that moment forward.
Preventing infection after a stem cell transplant
My doctor also told me to avoid eating fresh fruits and vegetables. For months, I ate nothing fresh.
Then another transplant patient told me she was eating bananas and that we could eat thick-skinned fruit as long as we peeled it. A whole new world opened for me. That first banana in months tasted wonderful.
As a regular churchgoer, I also had to devise a strategy to avoid crowded services. Strategy one was to go early. Strategy two involved surrounding myself with loved ones.
Going to a restaurant is challenging, too. It's tough to get a glass of water without the lemon wedge, and sending it back is no assurance that the waiter doesn't just take it off. Not being able to eat off of common serving stations meant no pizza buffets or free samples at the local warehouse store.
One morning after returning home, I brushed my teeth with my daughter's toothbrush and proceeded to freak out. I look back now and have to laugh.
Another morning, I was walking out back in flip-flops, and I stepped on a nail. It barely punctured the skin, but when my doctor's office opened that day, I was there for a tetanus booster.
Traveling by air presented its own challenges. On one trip, I had boarded my flight and found what I thought would be a safe seat, an aisle seat with no one in the two other seats. The plane was nearly full when a passenger boarded at the last minute with two children in tow.
It was my worst nightmare. She chose my two empty seats for her two children. When I told the flight attendant my predicament, she arranged for me to trade seats with the mom. It was a solution that made us both happy.
Better to be safe than sorry
We cancer patients live in a dangerous world where a common infection can be very serious. But as I've learned, following your care team's advice can be the difference between staying healthy and a trip to the ER and an unwanted inpatient stay.
I tried to follow all the guidelines, but I still got an infection even though I took the precautions seriously. Knowing what to do when the high fever struck meant getting medical care as quickly as possible. It might've even saved my life.
AML is one of the cancers MD Anderson is focusing on as part of our Moon Shots Program to dramatically reduce cancer deaths. Learn more about our AML/MDS Moon Shot.