Mentation. Dr. Ochoa-Bayon, inservice BMT, found Dad to be somnolent, but rousable. At times, Dad mumbled and was able to follow some simple commands. Dr. Baluch, BMT infectious disease, found Dad to be less anxious than the day before.
Epstein-Barr Virus, also called the Human Herpesvirus 4, is commonly known as “mono.”
Blood. Dad had a low grade fever during the night. Planned to repeat test for Epstein-Barr Virus (EBV; Human Herpesvirus 4 (HHV-4)) and Cytomegalovirus (CMV; Human Herpesvirus 5 (HHV-5)) on Monday. Set target to keep platelets above 50
A constant challenge is to keep the nurses and technicians, who change every 12 hours, keenly aware of Dad’s thin skin. He has such thin skin as a result of his cancer (CTCL). Nearly all of the medical staff under appreciate how thin Dad’s skin is. They incorrectly assume Mom and I are warning them just because we don’t want a slight tug on his skin. Nearly all types of adhesion (even paper tape) peels Dad’s skin right off. Dad is often left with an open wound when adhesive remover is not used to slowly and methodically to remove medical tape and adhesives. For immunocompromised patients, open wounds pose significant risk for infection.
Dr. Baluch monitored such open wounds on Dad’s chest (adhesive improperly removed during the procedure to remove Dad’s central line catheter last week). She checked on a second open wound on his right, lower back.
No results returned yet from the HHV-6 test conducted the day before.
Lungs. The chest X-Ray, taken the day before, showed an abnormal amount of fluid around Dad’s right lung (pleural effusion) with intermittent collapse or closure of a portion of the lung. Dad continued to be supplemented with oxygen via mask at 3L.
Abdomen. The day before, Dr. Ochoa-Bayona requested an X-ray to confirm the placement of Dad’s feeding tube since Dad had been confused and pulling on his feeding tube. That X-ray prompted the need to further advance the feeding tube. A second X-ray confirmed that it was in the proper place. Dad restarted trickle feeds via his feeding tube. He was monitored for diarrhea. Discontinued D5 water IV and continued free water flushes.
Kidneys. Creatine decreased from 4.9 to 4.7. Dad had good urine output. Dad’s urine remained slightly bloody due to the BK virus. This prompted Dr. Ochoa-Bayona, inservice BMT, to reduce the amount of sirolimus (immunosuppressant) Dad received.
Day +18, Wednesday, April 20th. Dad was transferred out of ICU back to the BMT (Blood & Marrow Transplant) floor.
WBC: 1.04 k/uL LOW H: 8.8 g/dL LOW P: 16 k/uL LOW BUN: 69 HIGH Cr: 3.4 HIGH Na+: 147 HIGH
Mentation: During the night, Dad was extremely restless and pulled at his various tubes and lines. A sitter was assigned to sit bedside. He became so restless that he had to be restrained. When Mom arrived in the morning, she was shocked and angered by the restraints and what had transpired overnight. Dad was mildly confused, bothered, and continued his attempts to remove the his tubes and lines.
Doctors wondered if Dad’s altered mentation was due to increased sodium or ICU delirium. Dr. Baluch, BMT infectious disease, changed how Zosyn was administered and also considered adjusting free water amounts via Dad’s tube feeds.
Blood. After multiple attempts, a PICC line was placed. Dad was officially declared engrafted with an absolute neutrophil count (ANC) of 1040. Dad was to receive neupogen for an additional day due to his recent sepsis. Due to the tip from the broken forceps during Dad’s central line catheter removal, the catheter site was monitored for new infection.
Graft versus host disease (GvHD). Dad continued to receive sirolimus via feeding tube. Acute GvHD assessment resulted in an overall grade of 0.
Skin = Stage 0
Liver = Stage 0
Gut = Stage 0
Mouth & Throat. Dad’s mouth continued to be dry. The nurse and Mom were regularly wetting his mouth with a green, water-saturated oral swab. Dad continued to have pain and thick secretions from mucositis, grade 1, and used magic mouthwash to treat.
Lungs. Dad no longer was on supplemental oxygen. His was breathing on his own. He continued to have a productive cough from the thick secretions resulting from the mucositis. Continued voriconazole and acycolovir.
Abdomen. In the wee hours of the morning, diarrhea was back, and a lot of it. Poor Dad had a rectal tube inserted. Ugh…how awful!
His tube feedings were discontinued due to the diarrhea since the doctors believed the diarrhea started the same time the tube feedings were initiated. Unfortunately, Dad continued asked for food and water. He was desperate for a popsicle and ice chips.
Speech therapy came by to test Dad’s ability to swallow properly. He was unsuccessful, and the feeding tube remained in place.
Kidneys. Dad had no dialysis. Dr. Chemaly, nephrology, was concerned about the rising BUN:creatine ratio and high sodium (Na+) level. Dr. Chemaly requested a renal function panel to determine free water amount.
Blood. The atypical Gram-negative bacteria was finally identified as Achromobacter xylosoxidans. Looks like an extremely difficult spelling bee word. He Continued minocycline for MRSA.
Dad continued to receive blood support (platelet and blood transfusions & neupogen shots) as needed.
Graft versus host disease (GvHD). Dad was still unable to take sirolimus since he was restricted from all food and drink.
Mouth & Throat. Dad continued to have pain from mucositis and used magic mouthwash to treat.
Heart. Overnight, Dad had an episode of tachycardia, which is an abnormal heart rate. He received metoprolol to address. His heart rate improved, however his blood pressure dropped. Cardiology came by later.
Lungs. Mom was very stressed about Dad being fed and that he did not have a feeding tube. Later in the evening, they were able to finally successfully place Dad’s feeding tube. Continued voriconazole and acycolovir.
Doctor sought to wean Dad off supplemental oxygen.
Abdomen. Dad continued meropenem, an ultra-broad spectrum antibiotic.
Kidneys. Dad was put on dialysis last night. First, he had a central venous catheter, which is a catheter used for dialysis, placed in his right groin. The surgeon wanted to place the dialysis catheter in his upper right chest above his heart, but Dad’s central line catheter is already occupying that spot. The surgeon did not want to place it in Dad’s upper left chest since the tubing would require a curve to get to Dad’s heart. The groin was not an optimal location either for two reasons. A groin placement would make it painful for Dad to sit, and Dad would be at a greater risk for a blood clot. The surgeon suggested that in 4 – 5 days, Dad should have his central line catheter moved away from his upper right chest and have the dialysis catheter moved from his right groin to his upper right chest. It was clear that the surgeon did not want the dialysis catheter to remain in Dad’s groin for too long.
Before Dad could have his dialysis catheter placed, he needed to get his platelet count to 50. Dad required three bags of platelets. Without enough platelets, Dad would have had trouble clotting during the catheter insertion procedure. He also received a bag of plasma and a bag of blood. Thank you to all those who regularly donate these blood products. Dad is a large consumer!
Day +15, Sunday, April 17th.
WBC: 0.13 k/uL CRITICAL H: 8.7 g/dL LOW P: 79 k/uL LOW Cr: 3.4 HIGH Na+: 147 HIGH
Blood. Dad’s white blood cell count continued to rise. His central line catheter continued to test positive for the atypical Gram-negative bacteria, Achromobacter xylosoxidans. Continued minocycline.
Dad continued to receive blood support (platelet and blood transfusions & neupogen shots) as needed.
Graft versus host disease (GvHD). Sirolimus was restarted since the feeding tube was inserted.
Mouth & Throat. Dad continued to have pain from mucositis and used magic mouthwash to treat.
Heart. Dad blood pressure improved and remained stable.
Lungs. Dad continued to receive supplemental oxygen. Continued voriconazole and acycolovir.
Abdomen. Dad continued meropenem, an ultra-broad spectrum antibiotic. The prior day’s CT scan showed evidence of ileus, which is the inability of the intestine to contract normally and move waste out of Dad’s body.
Kidneys. Dadno longer had blood in his urine. He remained on continuous dialysis. The prior day’s CT scan also showed hydronephrosis, excess fluid in the kidney due to a backup of urine, and hydroureter, dilated ureter. Urology was consulted.
Day +16, Monday, April 18th.
WBC: 0.24 k/uL CRITICAL H: 8.9 g/dL LOW P: 41 k/uL LOW Cr: 1.9 HIGH Na+: 143 NORMAL
Doughnuts from the Mini Doughnut Factory for the ICU staff.
Blood. Dad’s white blood cell count continued to rise. Dad continued to receive blood support (platelet and blood transfusions & neupogen shots) as needed. Weekly testing of CMV and EBV showed positive with decreasing levels. Thus, no treatment prescribed, but will continue to monitor. Dad continued to receive minocycline.
Graft versus host disease (GvHD). Dad continued to receive sirolimus via feeding tube. Acute GvHD assessment resulted in an overall grade of 0.
Skin = Stage 0
Liver = Stage 0
Gut = Stage 0
Mouth & Throat. Dad continued to have pain from mucositis, grade 1, and used magic mouthwash to treat.
Heart. Dad was in and out of atrial fibrillation. Continued metoprolol to address. Blood pressure continued its improvement.
Lungs. Continued voriconazole and acycolovir. Dad continued to receive supplemental oxygen, but lowered oxygen flow from 10L to 6L. Continued to have productive coughs. Kept Dad more upright in bed (no less than 30 degrees).
Abdomen. Began tube feeds to provide Dad nutrition. X-ray taken.
Kidneys. Dad remained on continuous dialysis. Doctor considered moving Dad from continuous dialysis to 4 hour dialysis.
Day +17, Tuesday, April 19th.
WBC: 0.55 k/uL CRITICAL H: 9.2 g/dL LOW P: 40 k/uL LOW Cr: 2.3 HIGH Na+: 145 NORMAL
Blood. Dad had his central line catheter removed. It was an extremely painful event. The surgical scissors/tweezer tip broke off and remained in Dad’s chest near his right, third rib. The broken piece was subsequently retrieved. Later another painful event for Dad was that the PICC team was unsuccessful in placing a PICC line in Dad’s arm.
He continued to receive minocycline.
Dad’s white blood cell count continued to rise. Dad continued to receive blood support (platelet and blood transfusions & neupogen shots) as needed.
Graft versus host disease (GvHD). Dad continued to receive sirolimus via feeding tube. Acute GvHD assessment resulted in an overall grade of 0.
Skin = Stage 0
Liver = Stage 0
Gut = Stage 0
Mouth & Throat. Dad continued to have pain from mucositis, grade 1, and used magic mouthwash to treat.
Heart. Dad was in and out of atrial fibrillation. Continued metoprolol to address. Cardiology was following.
Lungs. Dad continued to receive supplemental oxygen, but lowered oxygen flow from 6L to 2L. Continued to have productive coughs. Continued voriconazole and acycolovir.
Abdomen. Continued tube feeds.
Kidneys. Dad had no dialysis. Considered moving Dad back to BMT (Blood & Marrow Transplant) unit from ICU.
WBC: 0.08 k/uL CRITICAL H: 7.4 g/dL LOW P: 18 k/uL LOW Cr: 3.9 HIGH Na+: 148 HIGH
Blood. All three lines (blue, red & white) in Dad’s central line catheter indicated Gram-negative bacteria. Continued minocycline for MRSA and atypical Gram-negative bacteria.
Dad continued to receive blood support (platelet and blood transfusions & neupogen shots) as needed.
Graft versus host disease (GvHD). Dad was unable to take sirolimus since he was restricted from all food and drink.
Mouth & Throat. Dad continued to have pain from mucositis and used magic mouthwash to treat.
Heart. The day before’s echo cardiogram confirmed no heart failure.
Lungs. Dad continued his liquid diet. Again, anytime he drank, he would go into a terrible coughing fit and would require use of an oral suction/vacuum. It was determined that Dad’s epiglottis was not closing properly to prevent food and drink from entering his larynx down to his lungs. The day before’s two chest X-rays showed developing aspiration pneumonia.
Dad had another X-ray taken of his chest. Continued supplemental oxygen. Ordered a nasal feeding tube, but the nurse, who specializes in feeding tube insertions, was unsuccessful in placing Dad’s tube after several attempts.
Abdomen. The day before’s abdomen X-ray showed mild improvement. Imodium was stopped. Dad was switched from Zosyn to meropenem, an ultra-broad spectrum antibiotic.
Kidneys. Nephrology discussed with us the possibility of Dad needing dialysis. The day before’s renal ultrasound showed swelling of Dad’s right kidney due to a possible obstruction. Repeated ultrasound. BK virus was finally confirmed as the source of blood in Dad’s urine. Continued IV fluids and monitored sodium levels. Nephrology also monitored potassium in Dad’s blood and identified Dad as having hypokalemia (deficiency of potassium in the bloodstream). Dad was considered anuric (not passing urine).
Legs. An ultrasound of Dad’s legs, taken the night before, confirmed no blood clots.
Blood. Everyday, Dad’s 3 lumens (blue, red & white) of his central line catheter are tested. The day’s initial blue line test indicated Gram-negative bacteria. Dad was given tobramycin, an antibiotic, to treat. Further testing on the blue line resulted in Dr. Baluch, BMT infectious disease, stopping vancomysin and starting minocycline, another broad spectrum antibiotic.
Dad continued to receive blood support (platelet and blood transfusions & neupogen shots) as needed. Set targets for hemoglobin (H > 8) and platelets (P > 20).
Graft versus host disease (GvHD). Dad continued to take sirolimus to prevent GvHD.
Mouth & Throat. Dad continued to have pain from mucositis. Used magic mouthwash and oxycodone to treat.
Heart. Continued oral Amiodarone to manage atrial fibrillation.
Lungs. Dad had another X-ray of his chest. Continued supplemental oxygen.
Dad was still on a liquid diet. Anytime he drank, he would go into a terrible coughing fit and would require use of an oral suction/vacuum.
Abdomen. Dad continued with Imodium to treat diarrhea. He had another X-ray of his abdomen taken. Dad continued to receive Zosyn as broad spectrum antibiotic.
Kidneys. Creatine (Cr) is the most widely used marker of kidney function in patients undergoing stem cell transplant. Measure of creatine provides an estimation of renal function allows for following trends in renal function. We have learned that acute and chronic kidney disease are common following stem cell transplant and can lead to long-term effects. Stem-cell-transplant-associated kidney injury are often due to a variety of factors including conditioning chemotherapy and sepsis.
Nephrology (kidney doctors) was consulted. Dr. Khimani, inservice Blood & Marrow Transplant (BMT), noted that Dad’s urine output decreased in the prior 24 hours with increased creatine (Cr: 2.3 HIGH). Dad’s sodium also continued to increase (Na: 150 HIGH), which was noted as hypernatremia. Dad continued to receive fluids and have his sodium levels monitored. Dad had a renal ultrasound. Dad was having acute renal failure. He was in septic shock (widespread infection causing organ failure and dangerously low blood pressure) and cardiogenic shock (his heart was unable to pump enough blood to his organs to meet his body’s needs).
Dad was moved to intensive care status. Dr. Baluch, BMT infectious disease, believed that Dad should be transferred out of the BMT unit on the third floor to the intensive care unit (ICU) on the second floor.
Today is Day +7. Dad is doing fairly well considering he is in week two, which is one of the worst weeks that stem cell transplant patients endure. He has experienced a variety of issues as expected.
Three blood counts are tracked daily…white blood cell (WBC), hemoglobin (H), and platelets (P). Patients feel the worst as their WBC count plummets to zero, which occurs during week 2.
Dad was fatigued. He complained that he did not sleep well. He was restless. During the day, Dad was napping frequently to catch up on his missed sleep. Dad continued to have diarrhea, which was attributed to the toxicity of the melphalan (one of his two conditioing chemotherapies received on Day -2). Dad was given Imodium to address the diarrhea.
Dad also received his first of two doses of Cytoxin (cyclophosphamide). Post-transplantation cyclophosphamide (Day +3) prevents acute and chronic GvHD (graft-versus-host-disease).
Dad showed no signs of tremors. Doctors believed it was due to toxicity from the fludarabine chemotherapy, which Dad received on Day – 5 through Day – 2.
Overnight, Dad had spiked a fever of 101.9 and experienced tachycardia (abnormally rapid heart rate). His heart rate went as high as 175 bpm. He was treated with Lopressor (metoprolol) to help abate the tachycardia. Cardiology was consulted, and two electrocardiograms (ECG) were done (12:43 a.m. and 9:14 a.m.). Both ECGs returned similar results of sinus tachycardia (sinus rhythm with an elevated rated of impulses) with premature atrial complexes (APC).
Later mid-afternoon, Dad had an echocardiogram. Dr. Fradley, cardiologist, assessed Dad and concluded that Dad is asymptomatic during these short-lived episodes. He expected that Dad would have arrhythmia due to Dad’s melphalan chemotherapy, which Dad received on Day -2. 12% of patients develop atrial fibrillation from melphalan. He recommended rate control with metoprolol.
Dad had an episode of decreased oxygen saturations. An arterial blood gas (ABG) test was run to measure the acidity (pH) and the levels of oxygen and carbon dioxide in his blood. Dad was put on 3 L/min of oxygen via a nasal cannula.
Dad was also started on Vancomycin via IV to address possible infection in his intestines. Dad continued to have diarrhea and was fatigued. Dad started to note pain in his throat.
Dad was showing signs of fluid retention. He was given two doses of lasix. Dad was having to urinate constantly.
His chest X-ray showed no evidence of pneumonia.
Dad received a platelet transfusion and his second and final dose of Cytoxin (cyclophosphamide).
Overnight, Dad went into atrial fibrillation. He was initially given metoprolol via IV. He was then given diltiazem. After Dad experienced low blood pressure and uncontrolled heart rate with diltiazem, he was switched to amiodarone plus digoxin. Dad had another ECG at 8:30 a.m. It was abnormal confirming the atrial fibrillation. Dr. Robinson, cardiology, believed the atrial fibrillation was due to the melphalan chemotherapy, which Dad received on Day -2.
Patients with atrial fibrillation are at greater risk of deep vein thrombosis (DVT). Yet, Dad cannot take an anticoagulant since he is thrombocytopenic (low platetet count).
Dad continued to have diarrhea. He continued to receive Imodium to address. He also continued to receive lasix to address his fluid retention.
Dad complained of tickling of his throat. He was coughing after eating and drinking, thus speech therapy gave him an evaluation. Speech therapy recommended that Dad eat and drink only when sitting up completely. He continued to receive 2 L/min of oxygen.
As planned, Dad was given Rapamune (sirolimus) orally as a prophylaxis against GvHD. He will take sirolimus for 28 days.
Dad said he received the best night’s sleep he has had in two years. I found that to be quite incredible. The good news was that he was no longer having diarrhea. Dad said his mouth was dry and continued to have discomfort in his throat.
Dad received a platelet transfusion to raise his count from 7 to 14 k/uL.
Late in the morning, Dad finally was up and walking after two to three days of remaining in bed. I brought in a small megaphone for Mom and the physical therapist (PT) to use to encourage Dad to move more. George, the PT, was amused. He had Dad out of bed and moving down the hall with an entourage. Dad was using a walker, and George had a firm grip of the “belt” around Dad’s waist in case Dad fell or collapsed. Dad will have to work himself back up to walking 2 miles a day.
Italian ice is a part of Dad’s new, liquid diet.
Dad had his abdomen X-rayed since it continued to look enlarged. X-ray showed air levels concerning for ileus or obstruction. Patients can develop gastrointestinal (GI) ulcers, vomiting and dairrhea from melphalan. This nasty chemotherapy strips the mucosa of the GI tract. Severe cases can develop ileus or even perforation of the bowel wall. Dad was prescribed Flagyl (metronidazole) as an antibiotic for his abdomen. He was put on a clear liquid diet in order to give his intestines a rest.
Dr. Baluch, BMT (blood & marrow transplant) infectious disease, indicated that Dad would stop receiving vancomycin after today, if he had no more fevers nor positive cultures.
Dad’s urine showed a small amount of blood, but not enough to cause alarm. Another urine analysis to be conducted in one to two days to monitor.
Dad continued to receive lasix to address his fluid retention. He also continued to receive 2 L/min of oxygen.
Dad’s heart and oxygen monitor showing 146 bpm.
Late morning, the cardiologist, Dr. Robinson, was thinking that Dad’s heart was improving and had sustained a normal sinus rhythm (NSR). Dr. Robinson had begun to plan how Dad’s heart medications would begin to taper. Unfortunately, Dad’s heart rate was racing again in the afternoon.
Mouth & Throat. Dad’s mouth continued to be dry. The nurse and Mom were regularly wetting his mouth with a green, water-saturated oral swab. Dad continued to have pain and thick secretions from mucositis, grade 1, and used magic mouthwash to treat.
Dad was moved to the ICU on the second floor.
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