Chapter Four: Plan B
We arrived at the hospital early the next morning to find our stern Dr. Schrieber waiting for us. The news wasn’t good. Something had bothered him all night, so he came back to the hospital and poured over Steve’s blood work again. He hadn’t seen anything that unusual the night before, but something kept tugging at him, so he looked again. This time he noticed Steve’s ferritin levels were off the charts. He knew of only one disease that matched this finding. It was a very rare blood disorder that is so uncommon that most doctors don’t even know to look for it. He knew about it because he had treated only one other case in his many years of practice. He called a doctor friend in Utah to confirm his suspicions. He was right in his diagnosis; a diagnosis that would crush our hope. Most people don’t survive this illness and since it is so rare, the treatment for it is not really known. It was going to be a shot in the dark.
We were devastated. Steve’s already dire situation with the advanced lupus and multi-organ failure was now complicated by a very rare blood disease that was attacking his body and quickly killing him. The blood disorder we thought the machine would fix was now the wrong diagnosis, so the machine we had been so hopeful about was taken away. It was now a race against the clock to stop this newly diagnosed blood disease so the lupus could somehow be put in remission and his kidneys and liver could start working again. After this news, the next few days became a blur for me.
The new hospital routine began; around the clock nurses, doctors, tests, then more tests, respiratory technicians in and out of the room all hours of the day and night. X rays, MRI’s, new patients arriving and being placed in rooms next to us or near us, families crying, people dying, beepers always beeping alerting the nurses that another IV bag needed replacing. It was overwhelming, but it was our new life.
Steve slept deeply through all of it, only being brought out of sedation for a few minutes each day. We were told it’s better to bring him out for a few minutes periodically. He didn’t like it. He didn’t want to see where he was. The ventilator was painful and he hated the way it felt in his throat, so he was sedated again until the next time.
A new doctor was called in to see Steve, Dr. Epstein, the only rheumatologist in northern Arizona. He was only a few blocks from the hospital and he was willing to see Steve as soon as he could get there. His plan was to put Steve on very high doses of prednisone and a light chemotherapy, a treatment used for advanced lupus. He felt if he could get the lupus under control the blood disorder would recede since it had been determined that the blood disorder was a secondary disease caused by the complications of the advanced lupus. The chemotherapy IV was scheduled on our third day in ICU. It was going to be tricky, considering Steve’s critical state. His immune system was going to have to be brought to its lowest point to suppress the lupus. We were told his body, being in the fragile state it was, might not survive this extreme treatment, but we felt it was our only hope. I signed the papers and the first chemotherapy IV was given. All we could do was wait to see how Steve’s body would respond.
We gathered our courage each morning to walk through the ICU doors never knowing what we would find, afraid to hear about Steve’s night, but still wanting and needing to know. By now I was so exhausted and traumatized that I shook uncontrollably every time my cell phone rang. I needed to stop taking calls when I would go to the cafeteria or bathroom because almost every call was some kind of difficult news from a doctor or nurse. I finally told the nurses to only call my in laws from that point on. I could no longer hear another negative word about Steve’s condition.
This was my first empowered decision that would help me get my bearings and begin to take some part of my life back. I needed to learn how to navigate through this nightmare with the staff of doctors and nurses that had become my new way of life. We needed to be a team instead of me feeling like I was one of the patients. I wanted to become part of Steve’s healing team by remaining positive and comforting to my very vulnerable husband. His family completely agreed with me. They now would take all the calls. After that, my phone was only used to call loved ones and give them updates on Steve’s condition. This one simple choice, to not take any more calls, began a cascade of other empowering choices that would make our hospital stay a more empowering journey instead of an overwhelmingly out of control experience.