Lessons from my Stem Cell Transplant

I was lucky in that I avoided many of the complications of a stem cell transplant that many patients suffer. Beyond luck, I think there are things my caregiver and I did before and during the process that contributed to my success. I share some of the lessons I learned in the process.

I received an autologous stem cell trans­plant in July 2016. I chronicled the day-to-day progress of my trans­plant so I won’t repeat that account here. Instead, I’ll share some of my general thoughts and feel­ings about the process.

My stem cell transplant was performed outpatient, but because we live over an hour away from the clinic, we relocated to apartments reserved for transplant patients. While I didn’t like being away from home, this arrange­ment was a nice balance. It was better than being confined to a hospital room, but we were in a controlled environment conveniently located for my daily blood draws and consultations with the medical team.

Before the actual treatment, I completed three weeks of tests and meet­ings. The tests were to make sure I was ready to endure the transplant, and the meetings were to prepare me to do the things necessary to recover. This schedule was physically and mentally exhausting because of the number of appointments crammed into a short period.

Once I was cleared to move forward, I received Neupogen (filgrastim) injections twice a day for a week to mobilize stem cells so they could be harvested from my peripheral blood. As expected, the drug caused aches and bone pain, mostly in my hips. I took daily doses of Claritin (loratadine) to deal with the pain, but I only found true relief after the stem cells had been harvested from my body.

Eight days after my stem cell harvest, I started the actual stem cell transplant process. First, I received a high dose of the chemotherapy drug melphalan (Alkeran). The drug infusion was uneventful, but the preventative measures practiced were torturous.

One of the known, and significant, side effects of melphalan is that it can cause sores in the mouth and the rest of one’s digestive tract. These sores can be painful enough to prevent eating. To avoid this, I was in­structed to hold ice chips in my mouth for six hours (the infusion took about four hours). By the end of the day, the accumulation of IV hydration and melted ice made me feel bloated and sick. I still don’t want to see an ice chip today. I didn’t, however, suffer a single mouth sour. So, as horrible as it was, I recommend the process to all transplant patients.

After taking a day’s break, my previously harvested stem cells were reintroduced to my body. Despite re­ceiving several preventative medications, the preservatives the cells are stored in caused nausea and vomiting. Happy (second) birthday to me.

I consider myself very lucky in that my recovery from the transplant was relatively easy and uneventful. During the first 30 days, I slept a lot. Other than that, I experienced rather mild gastrointestinal issues, and I only received one transfusion of platelets. I was never hospitalized, I never ran a fever, and I never experienced any emergent problems. Going in, my “best case” expectation was for something like a two-week flu. It wasn’t even close to that bad.

I know my experience may not be the norm, and I don’t want to diminish the difficulty others endured. I can only share my story, and it simply wasn’t that difficult. I’ve said I was “lucky,” but I believe I learned some lessons that may help others avoid some of the negative effects of a transplant.

I had a great caregiver. I owe a huge debt to my wife. She is my caregiver and spends extraordinary energy keeping me healthy. Following the transplant, she continually and thoroughly cleaned and sanitized every­thing I could contact. Bathroom and bedroom linens were changed daily. Food was prepared and served with the utmost care. The information we received in the classes seemed somewhat overboard, but we followed the instructions carefully and I remained in good health. It could be coincidence, but I doubt it.

My medical team was proactive. Instead of reacting to conditions as they appeared, they acted to prevent those conditions from ever developing. I was given supplements and hydration not because my numbers reached alarming levels, but because the doctors know from experience it is easier to keep the numbers safe than it is to recover from them after they fall.

I listened to my body, but pushed as hard as I could. I rested – frequently. I also walked every day, even if I didn’t really feel like it. The most surprising thing to me after getting home was how weak I had become. I can’t imagine the condition I’d be in if I didn’t stay active during the transplant.

I ate. When I didn’t feel like eating, I grazed through the day to make sure I got some nutrition. I drank when I really didn’t want to drink, but I carefully tracked my hydration and made sure I reached my daily goals.

I considered my recovery my summer job, and I worked hard to make sure I was successful.

I continued to follow the rules, even when I thought I was outside the window of risk. I was sent home on Day 28 after my transplant, and I couldn’t have been happier, but going to familiar surroundings created temp­ta­tion to ease up on the cleaning and diet restrictions. I did my best to resist that temp­ta­tion.

During the months leading up to my transplant, I felt scared of the procedure that loomed ominously on the horizon. Nearly six months post transplant, the details of the treatment are becoming vague memories, and the transplant is in the rearview mirror of what I hope is a very, very long journey.

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Photo Credit: (c) 2016 Mark Pouley

Before my wife and I started the hard work of the transplant, we were able to spend a couple days at our favorite lake to relax and prepare. I spent a quiet morning on the lake in my kayak and captured this photo.

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