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My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 hours ago | Replies (582)Comment receiving replies
Hi Lori. We are at Day 8.
It’s quite a ride. He had those cyclophosphamide IV treatments Sunday and Monday as an inpatient. He got pretty sick completely lost appetite and then constantly on the toilet. They did a culture and found “c dif.” Started on vancomycin to add to his cocktail of drugs.
Began to feel better Tuesday was eating so discharged on time. Went straight to bed.
Nausea managed well with medication.
Felt good Wednesday and appetite returned. Yesterday bowel issues which continued today. He’s very fatigued and those counts are plummeting (we will go back for a platelet transfusion this afternoon).
We are taking each day/new development as it comes and the Station 94 team is giving him great care, trouble shooting problems and answering questions.
Hoping for engraftment asap.
He’s an ideal patient, grateful and kind and still witty.
I’m doing ok during the days but oh my cresting anxiety at night.
Replies to "Hi Lori. We are at Day 8. It’s quite a ride. He had those cyclophosphamide IV..."
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Quite a ride is an understatement. I’m happy to hear David’s great except for the C-diff. That’s a ‘pain in the butt’… Keep up with the vancomycin and add 2 servings of Greek yogurt daily to help restore his gut biome from the C-diff! It’s opportunistic and can hit when the defenses are down. With his numbers dropping, he is getting near rock bottom with his immunity. If he’s on day 8, engraftment can happen as early as 10 days but more often around 14+ days. So hang in there!!
He’s for sure an ideal patient with his upbeat and sunny attitude! It can make a difference for him and everyone around to remain as positive as possible. Some days are more challenging than others. ☺️ He’s in the best possible hands with the team in station 9-4. I can close my eyes and instantly be brought back 5 years ago to the rhythm of underlying calmness on that floor. I never lost a moment of sleep worrying under their care and guidance of my doctor.
Now for you…I’m going to suggest some mindfulness exercises to help with that nagging nighttime anxiety. Nightime is the worst when there is too much quiet. You’re easily distracted during the day. Different ballgame after lights out! Here is a good site with several exercises.
I’m seldom stressed but when I have a bad moment I still use mindfulness exercises to move past the anxiety. https://www.verywellhealth.com/mindfulness-exercises-5204406
Keep me updated! Air hug!