BMT Day +50 Update
It's been a month since I last blogged and an update is long overdue. After I engrafted in the hospital my counts continued to trend upward. Thankfully, I was released to return to my aunt and uncle's on April 12th and spent Easter with my family.
The first week or so at home was the most difficult physically. I could barely climb the stairs and just taking a shower took a tremendous amount of energy. I began walking on the treadmill to keep myself moving, but it took all of my effort to walk a quarter of a mile at an incredibly slow pace. Eventually, I was able to go up and down the stairs without getting winded and I worked my way up to half a mile on the treadmill.
In the past two weeks, however, I've hit some bumps in the road. Least significantly, I'm losing my eyebrows and eyelashes, which we knew would happen. I also developed a rash on my face and neck that the doctors think is graft vs. host disease. We began treating the rash with topical steroid cream, but when it healed in one spot it spread to another. The rash has moved its way down my body and now it's currently contained to the top of my feet. I'm hopeful that the steroid cream will knock it out completely in the next few days, as the itching often prevents me from sleeping well.
Last week we got some news that, frankly, threw me for a loop. I learned from blood tests that two viruses--Epstein-Barr virus (mono in layman's terms) and cytomegalovirus--have reactivated in my system. Most adults carry these viruses in their latent form. The viruses typically pose no problems because in a healthy adult the immune system keeps the viruses at bay. But bone marrow transplant patients are so immunosuppressed that it is somewhat common for the viruses to reactivate.
My tests last week showed that my viral loads for both viruses went up significantly in just a few short days. Frustratingly, the viruses have also depleted the progress I was making in my platelet, white blood cell, hemoglobin, and neutrophil counts. The treatment I'm receiving for both viruses may further reduce my counts until we get the viruses under control. I've received two weekly chemotherapy infusions of Rituxan for the Epstein-Barr virus (EBV), which is a drug traditionally used to treat non-Hodgkin lymphoma. We saw some improvement in my EBV viral load from last week to this week, so I'm hoping that the second infusion I received yesterday will be all I will need to knock everything out. I'm also taking Valcyte pills for the cytomegalovirus (CMV), but it will likely take a few weeks for that medication to fully reduce the CMV viral load.
Speaking of medication, I'm taking 28 pills a day right now. It's a full time job just trying to make sure I take my pills on time, get enough sleep, and drink enough water so that the medications don't completely destroy my kidneys. My appetite has been fair to poor, and most of the time eating feels like a chore. It's been tough, but I'm trying to eat as well as I can and keep my weight steady so the doctors don't put me on steroids to increase my appetite.
On a happier note, I have not been readmitted to the hospital for any of these complications. Instead, I get to spend time between my "chores" (drinking five bottles of water a day, eating, getting enough rest, multiple weekly clinic visits) holding my sweet baby girl. She is the best medicine I can possibly think of. And, today is Day +50 post-transplant, which means I'm halfway to Day +100 (in addition to being a big milestone, we will hopefully be coming back to Louisville around that time).
Otherwise, no news is good news. Only time will tell whether the transplant will remain successful, and I think waiting can sometimes be the hardest part (hat tip, Tom Petty).
Please know that those of you who kept us in your thoughts and prayers these past five months are truly making a difference. There were times when we weren't sure I would have a donor, make it to transplant, or engraft. Look how far we've come. Onward and upward!
