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DiscussionWant to talk about Multiple Myeloma: Anyone else?
Blood Cancers & Disorders | Last Active: Nov 10 6:24pm | Replies (414)Comment receiving replies
Replies to "@loribmt, @agent007 @capthondo @bscham I would also appreciate hearing about your experience to truly understand the..."
Hi @hopefuldaughter, I wanted to check in with you to see how your dad is doing on his stem cell journey. Hopefully he’s able to go through with it by now or soon… let me know how he’s doing, ok?
Hi @hopefuldaughter Never apologize for asking questions. There’s so much to learn about the SCT journey and recovery. @capthondo (Randy) perfectly summed up an autologous transplant (using the patients own stem cells). which is what your father will be having. Not sure if you saw his latest posting, https://connect.mayoclinic.org/comment/747475/ right here in our discussion group on MM.
His entire procedure was done at Mayo exactly where your dad will be. So your dad’s journey will be parallel to Randy’s.
My experience was a bit different because I had an allogenic transplant using someone else’s cells so my pre and post transplant story is a little more complicated. But from my experience, days 7 thru 15 after the actual transplant were the worst days. That seems to be around the normal time frame for most transplant patients so if you wanted to schedule a time to be with your parents, if your mom needs help, that’s probably a good gauge…just prior to week 2 post transplant.
Though if your dad has a fever or any side effects such as @capthondo and I had, he’ll be back at Station 9-4 in the hospital for several days. I know it’s difficult for you to know when to schedule the best time to be there for them.
As for support, again from my personal experience, my husband was my caregiver and he did an amazing job. But I’m a very independent person and found myself feeling irritated by hovering when I wanted, or needed to be left alone. As newly transplanted patients, we can’t be left alone but we don’t need constant pushing to eat, drink, walk when it’s just not in us at the time. So keep that in mind if your dad says he feels gross and just wants to sleep. It’s ok!! 😉
Read through Randy’s excellent accounting and then toss out more questions if you can think of anything specific. Have you looked into lodging yet?