by Jena | Apr 25, 2016 | BK virus, Cytomegalovirus (CMV), Epstein-Barr virus (EBV), Sirolimus, Stem Cell Transplant |
Day +22, Sunday, April 24, 2016
WBC: 2.86 k/uL LOW H: 9.7 g/dL LOW P: 11 k/uL LOW BUN: 83 HIGH Cr: 4.7 CRITICAL Na+: 143 NORMAL
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.
by Jena | Apr 24, 2016 | Atrial Fibrillation, Cytomegalovirus (CMV), Dialysis, Epstein-Barr virus (EBV), Graft-versus-host-disease (GvHD), Ileus, Meropenem, Minocycline, Sirolimus, Stem Cell Transplant |
Day +14, Saturday, April 16th.
WBC: 0.06 k/uL CRITICAL H: 7.7 g/dL LOW P: 10 k/uL LOW Cr: 5.1 CRITICAL Na+: 152 CRITICAL
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. Dad no 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.
Mentation: Dad was disoriented to place and time.
by Jena | Apr 4, 2016 | Cytomegalovirus (CMV), Graft-versus-host-disease (GvHD), Graft-versus-tumor (GvT), Sirolimus, Stem Cell Transplant |
Day +2, Monday, April 4th. Our two week spring break is over. Husband left the house at 4:30 a.m. to catch a flight to Ohio for work. Daughter was sunny and lively this morning despite still having coughing fits. She has one more day of antibiotics to address her bronchitis. Son stayed home from school and remained in bed due to his cold.
After dropping Daughter off at school at 7:30 a.m., I checked in with Mom and Dad. Mom was still in bed on the sleeper sofa. The lights were off in Dad’s room. Mom said that they had a rough night. Dad was now having diarrhea. After a minute or so on the phone with Mom, Dad needed to go to the bathroom. Alarms were sounding in his room. Dad was no longer allowed to get out of bed on his own. He was deemed too weak. I could hear the nurse, over Dad’s room’s speaker, telling my Dad to stay in bed until someone arrived to assist him. Needless to say, Mom and I ended our early morning call.
Dad FaceTimed me at 2:00 p.m. Dad was much improved. His eyes were bright and happy. He spoke with more vigor. The volume of stem cells and related fluids during the transplant infusion was rather large. Dad received 800mL on Saturday evening. Leslie, daytime nurse, said that transplant infusion volumes can be as small as a couple hundred mL to as large as 1 L (1000 mL). It is believed that the large volume of donor “fluids” received by Dad was the cause of his nausea and diarrhea. His body was unhappy about so much foreign substance.
I learned that Dad had a fever yesterday in addition to the nausea. It spiked at 101. This triggered the normal fever protocol to have a chest X-ray taken. Results from yesterday’s X-ray depict some spots. These spots have triggered a CT scan to be ordered. Dad should have the scan done today. Mom and Dad hope that Dad doesn’t require another bronchoalveolar lavage.
Dad mentioned that they rotated inservice BMT (blood & marrow transplant) doctors today. Dr. Khimani was now the inservice BMT.
Graft-versus-host-disease (GvHD) remains a major cause of morbidity and mortality after allogeneic transplantation, which is the type Dad received on Saturday. The older the recipient, the higher the risk for GvHD. We chatted with Leslie about Dad’s upcoming sirolimus medication on Day +5. Sirolimus prevents GvHD. Mom asked Leslie to print out hardcopy information containing facts, side effects, etc. about the drug. Mom studies all the drugs in detail.
Measures, previously developed that had significantly reduced GvHD, had been frequently associated with an increased risk of relapse. GvHD and graft-versus-tumor (GvT) effects are tightly linked, and balance between both reactions is difficult to achieve. The drug sirolimus has immunosuppresive, antitumor, and antiviral properties. Sirolimus’ unique properties give it an advantage over other immunosuppressive agents. It promotes GvT by allowing the new (donor’s) T cells to attack Dad’s remaining cancer cells, and it inhibits antigen presentation of by Dad’s antigen presenting cells (APCs). Recognition of Dad’s antigen by his new (donor’s) T cells commonly results in GvHD. Sirolimus also exerts antiviral actions, especially against the cytomegalovirus (CMV).
When FaceTiming with Dad at 5:00 p.m., Mom was making preparations to have Dad shower. Dad wanted to be showered for the evening before getting his CT scan at 6:30 p.m.
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