Well, the last you heard from me we were headed home and I was going to get to write you an updated post from our comfy couch. Things didn’t go quite as planned. Being home, while a little more comforting was incredibly overwhelming for both Justin and I. He was feeling okay when he was released late Friday evening, but the reality of not being monitored 24-hours a day by a medical team sunk in pretty quickly. By Saturday morning he was feeling a little worse and we tried to manage everything from home. A few bumps in our new routine, but we made it through Saturday, including my new level of caregiving: administering IV medication through his port. We woke up Sunday still tired, he was feeling a little worse, and by the time the visiting nurse arrived around 2pm, he had spiked a fever – one of the items on the list of “when to call the BMT team ASAP”. We called and were given instructions to head to the ER for admission back to the BMT unit.
A little scared, we gathered some things and headed back toward Ann Arbor. Due to the nature of being a BMT patient, they were quick to get Justin in his own room and to start monitoring his vital signs. The fever was gone, but concerns of an infection had the staff running tests for four hours before we made it back up to our home away from home.
Laying down in the room we had just left less than 48 hours prior was a little surreal, like the highly emotional and overwhelming two days at home never happened. We found comfort in this little room, instead of frustration that we had found as we were preparing for discharge. A questionable night’s sleep was between us and seeing his doctor for some answers to this next phase in Justin’s recovery.
Early Monday morning Justin’s primary transplant doctor came in to examine him and give us some insight. While they had not found the exact answer to why Justin was back in the hospital already, he had a theory: with Justin’s severe lack of appetite, nausea, vomiting, and cramping in the stomach it was looking like he might have Graft Versus Host Disease of the gastrointestinal tract. Essentially, Justin’s new bone marrow cells were fighting with the cells in his tissues, his body was trying to reject the new cells. After a day of tests, it was concluded that Justin had, indeed, developed Graft Versus Host Disease (GVHD) of the GI tract.
I know this sounds scary, so please, I beg of you, let me explain based on how Justin’s doctors have explained things to us – stay away from google and other “sources” of insight as to what GVHD means.
What is Graft Versus Host Disease (GVHD) – the Emily version: GVHD is essentially the tissues in your body rejecting the new bone marrow cells that have developed after transplant. It can be displayed in infinite ways, most commonly in the heart, liver, lungs, GI system, or skin. GVHD is expected for most to all BMT patients, in fact, doctors look to GVHD to make sure that engraftment has actually happened. It can be a sign that things are starting to function. If not controlled, GVHD can be very dangerous, even fatal. This is why when Justin was released last week we were given a packet of information giving us a list of incidents that warrant an immediate call to the BMT team. They are fully prepared to see every discharged patient back in the unit at some point.
By Tuesday morning, Justin was being treated for GVHD of the GI tract and skin. He was put on a course of antibiotics, steroids, anti-rejection medications, immunosuppressants (to aid the new cells in fighting), and lots of fluids. He was put on a clear liquid and eventually, a nothing by mouth diet. In the last couple of days, he has improved quite a bit, the nausea and pain in his stomach have subsided, his rashes are starting to clear up, and he is more alert and active. He has a long road still ahead of him as his team starts to pull back on his medications and monitor his body’s response. He is expected to remain in the hospital for at least another week, most likely two, they will begin evaluating discharge after he spends a couple of days off of the steroids and additional medications.
So the question of the week: Is this “Normal”? At this point, there really is no “normal” – each individual responds to a bone marrow transplant differently, GVHD has no “normal”. All I can say is that GVHD is expected in some form and all the doctors can do is monitor it closely, treat it, and see how the body responds. It’s a long, boring process, but it’s a necessary process.
Justin is improving, already looking better than he did at home. A little lighter from a liquid diet, but his positive attitude is beginning to resurface – he laughed for the first time in a week when a new doctor asked if I was his mother. He has been given the okay to introduce one solid, starchy food into his diet today, he chose potatoes. If his GI system tolerates the potatoes well he will be able to introduce new (bland) foods every couple of days. For now, we’re taking it one day at a time.
Thank you, as always, for the cards, prayers, positive vibes, and text messages. For those of you contacting Justin directly, he hasn’t been on his phone for the better part of the last week. It is hard to focus on the screen and he is often napping so he misses texts – please don’t take it personally and know that once he feels well enough to keep up with everyone, he will.