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DiscussionMy Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 2 days ago | Replies (549)Comment receiving replies
Replies to "@loribmt , Good morning! I appreciate your asking about Alex's journey. Today is Day +39 and..."
Hi! Alex sounds like he’s right on schedule now. What’s the old saying? It’s not a race, it’s a marathon. So there is a slow and steady pace to this process. The first month is the roughest. I think most of us in the allo-transplant world will agree with that. It seems almost insurmountable some days but we take one day at a time. Sometimes 30 seconds at a time…but we get through it, coming out on the other side feeling a bit like we have super powers.
I just read an excerpt from the small journal I kept with my transplant odyssey. There’s an entry from Day +37. It parallels Alex’s. I’d finally ditched the wheel chair needed for my 2 block ‘ride/walk’ through the Subway (lovely underground walkways between hotels, businesses in Rochester) to Mayo every day. Finally had the energy to walk longer distances! I was starting to eat again, though had daily bouts of nausea that came on like morning sickness.
Oh my gosh, the lodging issue is a problem for sure. For my 4 months in Rochester my husband and I stayed at a Marriott Residence Inn where we had full kitchen, 2 bedrooms, 2 bathrooms which made our stay a safe haven for our home away from home. BMT at Mayo is outpatient so I was only in the clinic for a couple days prior to transplant and 1 day after. I reported daily for blood draws, infusions, etc. It was a wonderful experience and awesome not being in a hospital setting for recovery. We could control my environment which needed to be kept pretty sterile.
I had to be no further than 30 miles from the Clinic for 100 days. We were less than 2 blocks away in the hotel.
A hotel room with a kitchen or kitchenette would be helpful for Alex and your husband, at least until the recovery house is available. Just make sure everything is wiped down with a disinfectant, shower curtain is new to avoid any fungal issues. Is there anything like that near the clinic where you son is being treated?