← Return to Can anyone share their bone marrow transplant caregiver experience?

Discussion
Comment receiving replies
@loribmt

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.

Jump to this post


Replies to "Hi @cupofsunshine. Well, as I learned with this whole AML/BMT process is that we don’t know..."

@loribmt I was wondering if the transplant house bends the rules for bmt'ers. Because bmt is not like a heart transplant (and or lung transplant...do those patients loose their immune systems?). Well, if the doctors say i need to eat in my room for several weeks, im wondering if they allow it. Because i did hear that they have to make exceptions. I'm getting the big part of this that needs to be prepared to follow very very precise rules and avoid infections of all kinds. I'm a very good patient. I just dont want to get up there, be in the transplant house and then try to move elsewhere halfway thru because its not working out. I rather go get an apartment in town, if needed. And your advice for the hotel was excellent (i'm calling them as we speak).

@loribmt Yes, i was wondering why these are using a Jakafi type inhibitor on me when im not even jak2 positive. (i'm Calr + Axl1 mutations) And i was wondering if I'm already immuno compromised (just with my condition alone). It looks like i reported my bmt matching donor results wrong. They just had'nt told me yet because i guess i had'nt asked. Today I found out they actually have a potential 9/10 donor but wanted to see how closely my brother might also be my match. Thats going to be exciting to find out about. ☀️🌻🤗