In and Out
6/08/2022
In the initial days after transplant, Ian’s vitals remained stable and his symptoms were relatively minor. The post-transplant chemo (Cytoxan) triggered just one mild fever. The two immunosuppressants, Cellcept and Tacrolimus, were also well tolerated. These latest treatments are helping the new stem cells to accept his body (preventing Graft-Versus-Host-Disease) and helping his body to accept the new stem cells (preventing engraftment failure).
Current medical practice is for all stem cell transplant patients to stay at least 30 days in the hospital. However, Duke is doing a trial of out-patient transplants, since people generally sleep, eat and move more when they are at home, which can improve outcomes. Ian was on the hybrid plan – inpatient for chemo and transplant, then after all new drugs had been successfully introduced, he would shift to out-patient.
Ian spent just 12 days in the hospital and was discharged on June 1st (Day +6 post-transplant). He was still neutropenic (zero white cells) so risk of infection was still very high. His energy and appetite were low, but better than most. He was ready to go back to our apartment, even though the BMT nurses took such great care of him! While Ian was in Duke Hospital, I found my happy place exploring Duke University and Duke Gardens – I even attended a service at the famed Duke Chapel!
As an out-patient, Ian had daily appointments at the Duke Blood Cancer Center. Each visit was about four to six hours. He usually had a private room, with a bed or a recliner. Based on daily labs and symptoms, the Nurse Practitioner would adjust his medications and the nurse would give him the necessary infusions. During his first week of out-patient, Ian was still hooked up to 3 IVs. He obviously couldn’t use a pole anymore (it’d be tough to fit in the car!), so he carried a backpack holding the three pumps and IV bags. It was heavy and physically tethered to him round the clock. The backpack made home-life cumbersome, but he was willing to drag it around in order to sleep in his own bed. Over the course of that week, the chemo symptoms hit with a vengeance, targeting his GI tract. From top to bottom, it was rough going (pun intended). Once the mucositis appeared, by way of throat sores, swallowing was intensely painful. Eating, drinking and taking his 31 pills a day (including one horse pill!) seemed impossible, so he voluntarily went back into the hospital on June 8.
Back at home, the kids and Kathie got Covid! After avoiding it for two years, the Rona finally caught up with them in the last week of school. The boys had cold symptoms with decent coughs, but Kathie didn’t miss a beat (and Bruce remains a mystery). The real heart break is that I was about to switch places with Kathie & Bruce for a week. I had planned to go home and take care of my boys and they had planned to come to Durham and take care of theirs! Sadly, that opportunity was lost. Through all of this, I have learned to roll with the punches, but this one really hurt.
