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Can anyone share their bone marrow transplant caregiver experience?
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Dec 18, 2023 | Replies (51)Comment receiving replies
To answer you back, yes i have caretakers and back-up caretakers. I had one really really important question for you. But first, I wanted to say how brave you are to have gone thru all that and survive! My question is actually about staying at the transplant house (and food). I eat 10 to 15 times a day. Are all transplants the same as far as the severity of loosing our immune systems? Or are the family of Leukemias (and mpn type) diseases/transplants the most severe? Because I'm not sure I want to stay at the tranplant house. The first reason being that there are too many people and the BMT patients seem to pay the biggest price in loosing immune systems. How am i going to eat that often ( in trying to nurse myself thru those hard days), if I should be staying in my room? If im only allowed to go to the kitchen to eat? It seems like those two things dont go together. please advise. thanks.
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Hi @cupofsunshine. Well, as I learned with this whole AML/BMT process is that we don’t know how strong or brave we are until it’s our only choice. ☺️
A huge key to survival is by implicitly following the direction of your transplant team. And one of the primary goals is to avoid situations where you’ll be exposed to infections.
You’re already thinking like a transplant patient. ☺️ I’m with you about not staying at the transplant house. I know a number of people who have been very happy there. It wasn’t for me. My husband was my caregiver and we’re just not ‘joiners’. So using a communal kitchen wouldn’t have worked well for either of us. We also wanted to be in complete control of our environment. We stayed at the Marriott Residence Inn and got a 2 bedroom, two bath suite so that I had my own room and bathroom.
Losing the immune system is our biggest threat. We have to be incredibly cautious for bacteria, fungal infections and viruses. Masking, sanitizing, etc., is critical. So if you’re needing to eat several times a day, sharing a kitchen may not be your best option. You may do better with hotel room with full kitchen, air bnb, an apartment rental, etc. That way you can have your own kitchen and space! Your caregiver can have food made up and ready for you to go much when needed.
Keeping in mind, your caregiver needs to be with you for several months so make sure you have space for them.
No matter the transplant allo or auto, we lose our immune systems with the conditioning chemo. Autologous transplants with patients using their own cells has a little easier and faster recovery period. They don’t have to worry about graft vs host disease because their stem cells already match up with the body they’ll be returning to. The marrow will have been cleansed but their stem cells will return to a comfy, familiar environment.
An Allogenic sct using a donor’s cells is more arduous on several levels. Doesn’t matter what the cancer or condition was that led to the transplant, the potential side effects are the same. However, the healthier a person is when they go into transplant, recovery seems to take place a little more robustly.
I think I covered everything? The gist is, yes, ‘stranger danger’. LOL. The more privacy the better.