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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: 7 hours ago | Replies (581)Comment receiving replies
My faith in our Mayo team slipped a little bit more. I think they are having a change of staff and our main ARPN is going out on maternity leave. The last time we saw her, she mentioned that she would have various appointments scheduled before my husband's admittance for his SCT. She specifically mentioned us meeting with the doctor prior to being admitted to the hospital. A lot of appointments were scheduled but never an appointment with the doctor. I waited. The team has been on top of things since March and I have never had to worrying or double check behind them. So, I waited for more appointments to be scheduled. The schedule never changed. So, yesterday, I called to inquire if we had to meet with the doctor. Oh, they said, there are pending orders in here for appointments and bloodwork but it wasn't sent to scheduling. I am losing my faith in our team and this is not a good time for that to happen. This transition from chemo consolidation to SCT does not seem organized from my window. I hope beyond my small view inside the workings of the SCT everything is organized and working like clock work.
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I hope all has been resolved and your husbands care plan is back on track. I am feeling very much in synch with you.
My husbands allogenic transplant here at Mayo Rochester is scheduled for August 22. Our home is four hours away so we moved here, temporarily, a month ago. Most of his pretransplant testing went fine but there were some issues. It has been a real roller coaster of scheduling changes and medication adjustments. I have struggled with not knowing who is coordinating all this: I am told it is his transplant specialist but of course it is difficult to get messages back and forth with a very busy MD.
We are on track now and managing the changes as they come. His first day of conditioning chemo was yesterday. We’ve had a lot of good patient education and support from peer mentors ( looking at you Lori) and the nurse managers at the transplant center are very good: I would prefer to have just one contact person but the “team model” apparently means several people. The reception folks at the transplant center always seem to know what to do with my questions and we are now with the stem cell transplant team at the hospital so in good hands. And we need them: we’ve been through a lot in life but this takes the cake.
Just want you to know you are not alone, keep advocating, you are his champion and that commitment will help your care team do the best for him.
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Oh my goodness, @caregiverx2 This is not common at all for any experience I’ve had at Mayo. It’s not like them to drop the ball…no matter which campus you’re attending. I’m with @katgob, I hope you called scheduling and were able to get this worked out! Don’t hesitate again to call their desk or contact the doctor through the portal!
You’re right, this isn’t a time for things to not be clicking along on schedule. Was there any further conversation with scheduling about getting the orders from ‘pending’ to scheduled??