I realize it has been nearly two years since I posted anything here. I know this forum is pretty dead for the most part but I wanted to give an update anyway, because reading through the past threads here was SO valuable to me. I thought an update might be encouraging to anyone that happens to find this thread.
My mom is doing great. She has been off cyclosporin for over a year and had her PICC line removed about 11 months ago. The only medications she is on right now are metoprolol, a small dose of atorvastatin, and a multivitamin.
Her hematologist has graduated her to being seen every 6 months now - and her last bloodwork 2/26/24 was Hgb 15 (!!), WBC 7, Platelets 174. All other blood tests were within normal values. She has been able to return to doing all daily life activities without much trouble, and no longer needs a walker. She was even cleared to start driving again!
Last year she needed to have her gallbladder removed due to sudden excruciating pain. I wondered if her medications had impaired the gallbladder at all, surgeon said it was possible but there is no confirmation. The surgery was intended to be laparoscopic but ended with it being open due to a nicked bile duct.
I was concerned at the time about the trauma of surgery causing a relapse, and of course post-surgery her blood values dropped, but they returned to normal within a month's time. The incision healed well and she hasn't had any issues with it since.
I am very thankful for the support here, the doctor who listened to me in the hospital that something wasn't adding up, the dietician who advocated for the NG tube feeding, the physical therapists, the hematology nurses, and to everyone out there who has donated blood and platelets.
My takeaway to anyone reading this thread - it's okay to ask questions about treatment efficacy, it's important to have a doctor who you feel listens to you and provides answers or is willing to find an answer for you. It's also very important to be able to advocate for yourself or to have someone you trust be able to advocate for you. Being able to accurately describe symptoms and their onset, duration, and physical effect is also probably the most important thing to learn when speaking with doctors. Learning more about the way doctors approach and evaluate problems really changed how I thought about medical care.
Best wishes to all of you going forward.
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