The First Post & Timeline

Welcome to my blog! Thank-you for sharing this journey with me.

First order of business: an explanation of what a Stem Cell Transplant is and an overview of the timeline. This segment is pretty much “just the facts” because I fell an urgency to get those broadcast.

My insurance finally approved my participation in a study on the effect of a Stem Cell Transplant on debilitating autoimmune diseases that have been unresponsive to other treatment. The purpose of the transplant is to give me a new immune system – using stem cells from my own blood – after using chemotherapy to destroy the old one, which has turned against me. Because this treatment is usually for cancer, my care will be coordinated through Seattle Cancer Care Alliance (SCCA) and the Fred Hutchison Cancer Center at the UW.

In general, treatment involves around a month of preparation, a month in the hospital, and a month living in Seattle. (I’d been told I’ll then be living with a “baby immune system”: I understood more what that meant when I learned that after about a year, my immune system would be mature enough for me to be re-immunized with all the usual vaccinations.)

First, a series of appointments and tests to make sure my body, soul, & circle of caregivers are ready for this procedure. My first appointment at SCCA was December 30. By mid January, if all is OK, I will begin a few days of infusions of something to stimulate stem cell growth; have a “central line” (semi-permanent in/out IV) placed in my chest, where it will remain for a few months. Its first use will be to harvest stem cells from my blood, which will then be frozen for several days.

Around the beginning of February, I will be admitted to UW hospital/Fred Hutch, where I’ll receive several days of chemotherapy – complete with all the typical side effects, including nausea and hair loss – to wipe out my immune system. Next, my stem cells will be re-infused and for the next few weeks I’ll be closely monitored while waiting for my new immune system to graft and grow. My body will of course be at huge risk for infection so I’ll be in the Transplant Ward at Fred Hutch, receiving antibiotics and whatever else I need through the central line. If all goes well, I’ll be released - to live within 15 minutes of the hospital for the first month when the infection risk is still quite high.

So for this month (March-ish), I will need to reside in Seattle, and will require a caregiver with me 24/7 to take my temperature, drive me to the hospital if…, etc. Those dear people must have a flu shot; take a class or two at SCCA; be familiar with driving my van; know the route to UW hospital; and be able to give up part of their lives/routines to take care of me in Seattle. So far I have lined up a few people to share the load with Rick, but it’s been hard for me to ask.