I feel overwhelmed by the task of conveying this past week.
On Saturday I was admitted to Stanford hospital for fever symptoms. I can’t actually get a fever because prednisone suppresses fevers and I’m on a very high dose, but I had chills and body aches, which was enough for any BMT doctor to want me inpatient.
I arrived at the hospital around 7 AM and was given fluids and some heavy duty antibiotics. At 4 PM sudden, intense kidney pain came on. By the next day I was in full blown renal failure. For probably only the third time in my treatment, I really truly thought I was about to die (the other two times were when my induction chemo failed and when that central line spilled into my chest cavity and I was intubated). Acute renal failure feels like death. I had a wicked headache and was vomiting nonstop. I gained 7 kg (15lbs) of water weight in one day. My lungs filled with fluid. My heart started to struggle. This means I was going into multi system organ failure. People do not come back from multi system organ failure.
An emergency femoral line was placed and I started emergency dialysis. After three sessions, they have removed 20 lbs of weight. We still have about 30 to go before I’m at what we consider my “dry weight.” I am calling it my med spa treatment. We don’t know exactly why my kidneys are failing, but there are some ideas. The fluid overload over the past few months has probably been my kidneys struggling for awhile, but the labs don’t really show this until the problem progresses pretty far. The sudden onset may have been triggered by the IV antibiotics I got on Saturday, but there is likely an underlying cause and it would have happened anyway. On Monday I am getting a kidney biopsy, but it’s more to rule things out than to find the cause. The nephrologist said we will likely never know exactly why.
Tomorrow I will be getting a more permanent dialysis catheter placed in my chest and will hopefully get the femoral line out. These procedures, including the kidney biopsy and a lumbar puncture I got Saturday to rule out infection, have/will all be done awake. Partly because my respiratory needs are too high to safely sedate me and partly because I am on an adult BMT floor and they are not as nice to adults as they are to kids. I have reduced my oxygen needs from 25L of high flow to 6L. I have lost most of my mobility/ability to walk, and I have PT and OT every day. My hands are so swollen from being stuck 5-10 times a day that I cannot close them.
The nephrologist and my oncologist believe that I have a very high chance of my kidneys rebounding. Every morning at rounds the nephrologist says “you walked in here with functioning kidneys and you will leave with functioning kidneys.” If not, we know a perfect match of course (lol thanks jack). I will feel stupid if I have to get another transplant but the funny thing is that since I have Jack’s bone marrow my immune system is actually uniquely capable of accepting a kidney from him. It’s also funny because I did research on combined kidney/stem cell transplants before any of this went down. I’m currently working on neuroblastoma research so maybe I should stop before I get neuroblastoma too.
The next days and weeks and months will be hard. I had to be temporarily taken off of immune suppression for my gvhd due to the renal failure but we will start adding things back soon – likely photopheresis first since it is not hard on kidneys and then after that we will try imbrutinib and IL2 again. I’m taking time off and going home. Send me your love, good vibes, warm wishes.