11/19-23/10
Over this past weekend, despite 4 IV antibiotics Teri has had about 15 fever spikes over Friday to Monday. When she becomes feverish, she has rigors (shaking chills) where the whole bed shakes as if a subway is rumbling past her NY apartment in childhood. As she tries to feed, the spoon moves to and fro past her mouth. With each fever, she gets additional blood cultures, sometimes a chest x-ray and urine culture. With the fever, she shakes, moans, she whimpers, she cries, not in pain, but in profound discomfort. It is difficult to watch her suffer with these uncontrollable rigors.
The persistence of the infection despite full court press antibiotic (+ antifungal + antiviral) regimen is all disconcerting and discouraging and becoming desperate.
It all begins with her persistent neutropenia (no bacteria-fighting white cells) now for > 2 months, a dangerous duration. She is fighting a serious superbug vancomycin-resistant enterococcus (VRE) that is resistant to many antibiotics. That is, she fighting with one hand (antibiotics) while the other is tied behind her back (neutrophils). Her cultures still remain positive for the vancomycin-resistant enterococcus (VRE).
She wants so to go home! She is discouraged.
Monday November 22 was an eventful day. She underwent a platelet transfusion, a CAT scan, had her PICC line pulled (to remove it as a potential source of infection), and had a new jugular line inserted (her right neck) and had her IV stopped finally because she has retained some 9 lbs of fluid.
The roller coaster of emotional highs and lows continues.
Because no one is certain what is causing the persistent fevers, she was seen by several new consultants – infectious disease, pulmonary, and cardiothoracic surgery. Unfortunately, the lung CAT scan revealed an enlarging nodule in her right upper lung that had doubled in size over 9 days. The guess was that this was a new fungal infection, possibly aspergillus. The pulmonologists first recommended a bronchoscopy with biopsy but felt the nodule was too distant from the airway and then they suggested bronchoalveolar lavage (BAL) – a lung rinsing process. But the yield of a diagnosis was admittedly was low. The cardiothoracic (CT) team were then asked to obtain a surgical biopsy by video-assisted thoracotomy (VAT), akin to laparoscopy but in the chest, that would leave her with a temporary chest tube. She was scheduled for surgery as an add-on (after scheduled cases) today the 23rd! We were concerned about the risk to Teri who has no clotting ability (but would be transfused with platelets) and no infection fighting ability
After further review of Teri’s CAT scan, the CT surgical team felt that the lesion could not be easily reached by their surgical scope and would require a wedge (as in pie) resection or lobectomy (whole lobe removed). But, these latter two procedures fall into a much higher risk category. By this morning, after much four-team deliberation and conferencing, the surgery was placed on hold!
The infectious disease consultants decided to alter her antibiotic regimen to a higher dose of daptomycin and begin an alternate old antifungal amphotericin, which we used to nickname ampho’terrible’. Unfortunately, Teri had a terrible time with the amphotericin, rigors, inability to walk, and feeling her body was on fire. It was a rough night. Overall, we are much happier with the current plan of seeing how the new antibiotics are working, rather than the surgical path.
Today, she is receiving white cell transfusion from an identified donor as a bridge. She also received a high dose of injected Neupogen to stimulate her stem cells to produce white cells.
Unfortunately, this morning’s echocardiogram confirmed the suspected endocarditis, an infection that affects valves of the heart, a known complication of VRE. Not good, but survivable.
Teri recognizes that communication has become difficult and at times awkward with many of you whom she loves so much. What can one or what more can one say? It seems important to try … You can 9 am to 3 pm CST to say hello on her cell phone.
Teri this week needs your potent prayers, cosmic comments, and real-time Reike, more than ever ...
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