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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)
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@cupofsunshine

@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).

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Replies to "@Loribmt I was wondering if the transplant house bends the rules for bmt'ers. Because bmt is..."
Lori, Volunteer Mentor | @loribmt | Jul 11, 2023

I really have no experience stay at the transplant house in Rochester. Are you talking about The Gift of Life Transplant house? Fellow mentor @rosemarya may be able to give you some first hand information. She had a liver and kidney transplant at Mayo Rochester and stayed at the GOF house…

Tissue transplants patients don’t lose their immune system like we do but they are on strong immunosuppressants which can seriously compromise their ability to fight infections. So it’s equally important for them to be safe as well.
I wasn’t aware that there’s no eating in the rooms? From my experience I can tell you there were times it was difficult dragging my old bag of bones out of bed to shuffle to our kitchen 5 steps through my bedroom door in the hotel. And I sure wasn’t fit for public viewing in a common area! 😂

Can’t remember if I mentioned this or not but you will be required to go to the clinic…Station 9-4 in the Methodist hospital daily. Sometimes more than once. So you’ll want to be near the clinic if possible and not having to find a place to park each time.
If you opt for a hotel, since you’ll be there for more than a month ask for a lease rate. That way you won’t have to pay county room tax. ☺️

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