Since being out of the hospital I have been managing my care outpatient through Fred Hutch. In short, it has been a full time job! 

I have been at the clinic Monday-Friday most weeks with very few days off. The first 2 weeks of being out of the hospital were rough; I was battling many side effects from the dozens of medications that I’m currently on. I am on antivirals, antifungals, antibiotics, and anti-rejection meds. Each has different side effects that go along with them. 

I’ve been doing at-home infusions for magnesium along with in-clinic infusions for a specific medication that I’m not allowed to administer at home. 

I unfortunately was diagnosed with adenovirus and have been placed on a very intense anti viral medication called Cidofovir to help keep me out of the hospital. The medication is the only one approved to treat adenovirus at this time and when I met with the infectious disease team they reiterated they don’t even like the medication and that they hope to get me off of it as soon as possible. 

Prior to getting diagnosed with adenovirus my bone marrow transplant team was worried that I was suffering from graft vs host disease (GVHD) in my intestines and placed me on high dose IV steroids as well as 2 other steroid medications. These have not been easy to be on and the steroids have been causing their own issues including insomnia and mood swings. 

I had to have both an upper endoscopy and lower flexible sigmoidoscopy done last week so that the team could take biopsies to rule out GVHD. If the biopsies come back negative for GVHD, this will be the best case scenario and I will be able to get off the steroids sooner and hopefully wean off of some of the other medications I am on. 

This transplant recovery has not been easy on me and the recovery is slow. I have been feeling sick more days than not at this point and I know with time it will get better but right now it’s a slow healing process. I have been having to be very patient with myself as my energy levels are still low and my fatigue is still high. I am currently on day +46 and am feeling grateful that my blood counts are still rising. 

Positive news is I haven’t needed any blood transfusions in a month which is amazing and means my body is working hard at producing its own blood! Kira’s cells are working wonders in my body and I am very thankful for her magical cells. I am definitely homesick and can’t wait until next month when I can graduate from the bone marrow transplant team and move back home.