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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
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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I have stayed there for a week back in February, as a practice run. It would be hard for me to know if it will work or not, tho, because im not sure how i will be doing thru the transplant. I cant imagine then kicking out a bmt patient just for trying to eat to stay alive. But, really, they are seriously so so strict. they have signs everywhere that say "no eating in the rooms". But this last visit to the GoL transplant house in May, the lady said they sometimes have to makeaccomadations (for feeding tubes?), but she didn't explain that fully. There are no tvs in the rooms, its just two beds (you can have a third visitor for an additional nightly fee) and one bathroom, a dresser, a closet , a recliner or chair and a laptop cubby. It is very quiet tho. Yes, when i finally had my in-person social worker interview/appointment, the social worker said that there is about one month of coming in every single day. The hotel gave me the nightly fee and that came out to 6k a month, and so i felt like that was completely ridiculous. An apartment in town (priced around 900 to 1500/ month. The GoL if only 900 a month (@30 a day for two people). But I agree with you, if im looking really really sick, why on earth would i want to leave my room just to go eat. 🙁