What a week....
In support of
Sara and the Johney Family
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Sara and the Johney Family
This past week was a lot tougher than I expected. I was looking forward to spending a week at home as it was my "off" week from the trial but I unfortunately spent it in the hospital. I started to experience the normal side effects of the trial medication (diarrhea, fatigue, nausea) but the nausea caused severe dehydration and was soon matched with awful abdominal pain and cramping. I was unable to keep up with fluids and was sent to the ER for evaluation.
My heart rate was in the 140s and my blood pressure was low so I was admitted for possible infection and IV fluid hydration. Over the course of the day/night, my temperature slowly rose to 102.9 and my blood pressure continued to drop. My pulse unfortunately stayed in the 140s. The next day, my best friend Katie surprised me with a visit and came for all the action as my BP dropped to 73/47! I was awake and talking the whole time but after a Rapid Response was called, I was transferred to the ICU for pressors. I only needed a low dose of pressors for about 24 hours and then it started to increase on it own. I did require a blood transfusion, but my counts quickly resolved. I was severely neutropenic (low white blood cell count) but after several days of a WBC booster, my counts returned to normal.
During this time, my hair started to fall out and Dave shaved it in the hospital. I was hoping I could keep it but luck was not on my side. It's okay....I will rock the bald look! Despite the numerous setbacks, my hospitalization was actually a great experience. I was seen by Palliative Care and they recommended Animal Therapy and Art Therapy. I got to make a beautiful box using decoupage and was visited by Luigi a 1.5 year old golden dauchhound. My nurses were superb and I actually got a decent amount of sleep! My cousin Chasity and great friend Jenny visited me as well which were wonderful distractions. Charlotte, Mimi, Grandpa, and Dave all came to show me love as well.
After 7 long days, I was finally discharged home. I am feeling much better and due to my significant side effects, the Yale team and I decided to delay my treatment by 1 week. The Clinical Trial team believes I have a genetic mutation that prevents the trial drug from normal metabolization and it lasts longer in my system meaning I have worse side effects. I will be tested for the mutation at my next appointment. Other than that, I'm feeling a lot better and happy to be home! Thank you again for the INCREDIBLE support we have received from everyone...even those we have yet to meet. Your generousity means so much and gives me the encouragement to keep on going. Things have been hard but you all keep me going! Next trip to Yale is October 26th!
My heart rate was in the 140s and my blood pressure was low so I was admitted for possible infection and IV fluid hydration. Over the course of the day/night, my temperature slowly rose to 102.9 and my blood pressure continued to drop. My pulse unfortunately stayed in the 140s. The next day, my best friend Katie surprised me with a visit and came for all the action as my BP dropped to 73/47! I was awake and talking the whole time but after a Rapid Response was called, I was transferred to the ICU for pressors. I only needed a low dose of pressors for about 24 hours and then it started to increase on it own. I did require a blood transfusion, but my counts quickly resolved. I was severely neutropenic (low white blood cell count) but after several days of a WBC booster, my counts returned to normal.
During this time, my hair started to fall out and Dave shaved it in the hospital. I was hoping I could keep it but luck was not on my side. It's okay....I will rock the bald look! Despite the numerous setbacks, my hospitalization was actually a great experience. I was seen by Palliative Care and they recommended Animal Therapy and Art Therapy. I got to make a beautiful box using decoupage and was visited by Luigi a 1.5 year old golden dauchhound. My nurses were superb and I actually got a decent amount of sleep! My cousin Chasity and great friend Jenny visited me as well which were wonderful distractions. Charlotte, Mimi, Grandpa, and Dave all came to show me love as well.
After 7 long days, I was finally discharged home. I am feeling much better and due to my significant side effects, the Yale team and I decided to delay my treatment by 1 week. The Clinical Trial team believes I have a genetic mutation that prevents the trial drug from normal metabolization and it lasts longer in my system meaning I have worse side effects. I will be tested for the mutation at my next appointment. Other than that, I'm feeling a lot better and happy to be home! Thank you again for the INCREDIBLE support we have received from everyone...even those we have yet to meet. Your generousity means so much and gives me the encouragement to keep on going. Things have been hard but you all keep me going! Next trip to Yale is October 26th!
Comments
Grace Waddell 13 days ago
Janandvon 13 days ago