Published on February 21, 2020
As I write this today, I am 44 years old and 104 days post-allogeneic transplant. I’m skinny, bald and still in recovery mode. I am also extremely thankful to my medical team and anonymous donor for this second chance at life. 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.
Before I started this journey, I scoured the Internet looking for transplant information. I found plenty of booklets from medical institutions and journal articles with technical details. What surprised me was the lack of written information from patients themselves. I found that a lot of information was passed among patients in an informal peer-to-peer fashion. I decided that if I made it through my transplant, then I would take my journal notes and create a more detailed blog to help other patients via a wider platform. It took me 104 days to sit down and just get started. My focus and drive has been to start afresh in this new life giving no more thought to the transplant process. After putting off this project long enough, I’m finally ready to set my ideas down on paper.
Part 1: Pre-Transplant Preparation
There is more to preparing for a transplant than packing a hospital bag. I wish it were that easy. I had to get my mind around the fact that my medical team was going to bring me to the brink of death with high-dose chemotherapy. I needed to strengthen my body for the ravages of the stem cell process so that I was as prepared physically as I was mentally. I had dozens of household, employment, and legal decisions to make. This first blog post delves into my personal experiences before ever moving into the hospital.
This is a mental game above all else. The best analogy I’ve found is to liken the process to a roller coaster ride. Once you’ve committed to the process, you are strapped into the carriage and there is no jumping out. You’re in it with no escape until the ride comes to an end with no control over the ride’s ups and downs.
I wrote in my journal that making the phone call to my MUD coordinator felt like Day 0, even though traditionally Day 0 is transplant day, when donor cells are transfused into the recipient. It felt like Day 0 to me because that phone call was the moment when I said I was all in. “Today marked for me the turn from theoretical to real. To Yes.” I committed to a schedule, which included extensive testing, out-patient chemotherapy, hospital admission, in-patient high-dose chemotherapy and a transplant date. Those dates were no longer possible future events; they were now non-negotiable set-in-stone dates worked backwards from my donor’s availability.
A transplant patient’s closest family members and friends also need time to process what’s happening, both for themselves and so they can help you. They may have questions for you or need help finding accurate information on-line. I found that the more open I was about the process, the more comfortable everyone was with my decision. Each personal visit, phone call and carefully crafted message was difficult but helped all of us get comfortable with the idea of my needing a stem cell transplant. It also helped me come to terms with what I would be missing—after all, the transplant process is isolating. Not only did I miss family and work events, I missed my son’s high school graduation and college move-in. Talking it through with those closest to me made everyone certain that now was the right time to tackle the transplant.
Give a lot of thought to who is going to take care of you. It’s a serious commitment both time-wise and emotionally. Your caregiver(s)/care partner(s) need to be available to attend pre-transplant office visits and diagnostic testing appointments, to act as a conduit of information to family and friends, to ensure you have everything you need in your hospital room during the transplant, to stay with you as needed at the hospital, and to then live with you after the transplant for the 100 days that you need a 24/7 caregiver. It’s a lot to ask of one person. I was lucky in that my sister was willing to take on the role of primary caregiver with my spouse rolling in and out as work allowed. This left two households in disarray (mine and my sister’s) but shifted the burden off of just one person.
I approached the transplant process relatively young and healthy. Still, I had read about patients experiencing muscle weakness, fatigue and weight loss. Now on the other side of the transplant, I can say that it is critical to get as much exercise, fresh air and good food as possible before entering the hospital. I focused on: 1) gaining 10 pounds. I was already at a normal weight, so I needed a buffer before starting chemo. I lost that 10 pounds and then another 20. 2) increasing core strength and mobility. I worked with a gym trainer to focus on my core (crunches, sit-ups, planks) and leg strength (walking, squats, lunges). I needed to be able to get up and out of my bed unassisted during the transplant process. I increased the amount of time I spent walking around my neighborhood, which helped my cardiovascular health and bone strength. Without advanced preparation, it would have been easy to end up a weak skeleton stuck in a hospital bed unable to care for myself.
I also cut my hair. This was a harder step than I anticipated, and I needed my sister caregiver at my side. I have (or at least had!) naturally thick, long hair. Once I committed to the transplant schedule, I cut it into a fun short style. Then I had the rest of it buzzed off before my hospital admission.
My motto was to expect the best result while preparing for the worst. I executed a medical power of attorney, a medical directive to physicians, and a will. I did not expect these documents to become necessary, but in the event of a medical crisis, I wanted my team to understand my wishes. I also executed a legal power of attorney so that my spouse could handle our finances and sell certain possessions to raise funds if events turned critical.
I am self-employed in a law firm run with one other partner. We talked openly about the different possible outcomes. I cleared my desk, tidied my files, and informed my clients of my expected absence. I did not want to leave my work unsettled in the event of an extended or forever absence. In a more traditional employee/employer relationship, the patient employee needs to inform the employer of the expected length of absence and work with any Human Resources staff on using sick and vacation time, as well as the protections afforded under the FMLA. My spouse completed FMLA paperwork for his employer so that he could be available for my doctors’ visits and general care.
I also hired a lawyer who specializes in Social Security Disability. She helped me complete the forms necessary to apply for disability in the event I was unable to return to work on a timely basis. The application process takes months to process and then once approved, payments do not start until six months after the date of disability (often the actual transplant date). If you think there’s even a chance that you might need disability payments, apply months before the transplant date.
Now we’re to the point of what goes in your hospital bag! This is the easy part:
- Button-front pajamas. Most transplant patients have a central venous catheter (CVC). The nurses use the CVC to dispense medication and to draw blood. It’s easy for them to do this work if all the patient needs to do is unbutton one top button. Items like T-shirts, tank tops and bralettes may seem like they would be more comfortable, but because they have to be pulled on overhead, they can’t pass over the connected IV lines and you’ll be stuck with one arm hanging out and the material bunched around your neck. Also, for women who like to be tucked up and tidy during the day, I recommend cotton front-closure bras with no underwire.
- A lightweight robe or jacket. Part of a patient’s in-hospital rehab involves walking around the floor. I felt comfortable wearing a robe over my pajamas. Some patients wore zip-up jackets and shorts. Whatever you’re comfortable in will be fine.
- Nonslip socks and walking shoes. The socks can range from traditional hospital-style tube socks to yoga/barre exercise socks. It doesn’t matter. The only important aspect is the sticky spots on the bottom, so you don’t fall down while running to the bathroom. The walking shoes are just for walking around your designated floor for exercise; your medical team is not letting you out of the hospital for a trip around the block.
- An eye mask. Bring one for yourself and another for your caregiver/care partner. The light shining from the IV machines is constant, as is the revolving door of medical professionals coming in to check on you. My eye mask with soft cupped eyes was the only way I kept asleep or at least remained drowsy through the light pollution.
- Simple self-care items. There’s no looking fancy during treatment. I packed an ultra-soft toothbrush, toothpaste, gentle ribbon-style dental floss, a couple of different types of lip balm and plain lotion. My sister caregiver also brought an electric razor for when it was time to help my hair fall out.
- Something to read or watch TV. I brought a Kindle and an iPad. I had big expectations of reading new books until I realized my brain felt like mush from the combined effects of chemo, general anxiety and lack of sleep. I instead re-read past books downloaded to my Kindle and watched baseball games.
- Some other activities to keep busy. I brought crochet projects and coloring books. I didn’t manage to complete anything! I could have left this at home, but each person’s experience is different. Your caregiver too needs a constant supply of quiet activities. Most hospitals welcome one overnight visitor.
- Soft blankets. My family and friends gifted me with a soft blanket for the bed and another lap blanket for the couch/chair when sitting outside of the bed. The hospital provides basic sheets and standard thin white blankets. Something more comfortable and comforting was nice to have.
- Soft toilet paper. This seems like a silly addition, but it can make a huge difference on a sore bottom. Frankly, there are a lot of bathroom activities during the transplant process.
I wish you the best on your stem cell transplant journey. Above all, remain positive and trust that you’ve made the best decision for yourself and your family.
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.