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@soonerfan

Oh my gosh yes I have questions.
We are thinking ( my husband & I) he will be traveling with me and as my caregiver. I know that I’ll be isolation for 2 weeks. ( that’s what Dr Jones @ Mayo said) but where to stay for the 2 months after. What do you bring? I know parking is an issue. We are very much considering driving. So we can have at least some sense of normal. My mind is all over the place. Thank you so much for reaching out. I’ll check out that article in your post. I’m sure as the time draws near my questions will be abundant. Thank you again

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Replies to "Oh my gosh yes I have questions. We are thinking ( my husband & I) he..."

You have questions, I have answers (along with a number of other members here). So, first I want you to take a slow, deep breath and then exhale…we’ll get you through this! Promise! ☺️
Stem cell transplantation at Mayo is generally considered outpatient. So you will live off-campus in a hotel, condo, apartment, etc., You’ll be expected to return to the clinic daily, sometimes a couple times daily for blood work, infusions and appointments. So it’s important to find lodging fairly close by. There are shuttle services to get patients back and forth to the clinic if you’re not nearby.

There are links I can provide for discussions about lodging and what has worked best for longterm stays. Most places are set up for longterm patients with kitchens/kitchenettes with stoves and refrigerators. That way you can have some normalcy. There are also facilities such as The Gift of Life Transplant house where you can stay in a group type setting but you’d have a private room. The kitchen is shared though.

We’re not ‘group home’ type people so my husband and I set up for the 3.5 months (Allogenic transplant) at the Marriott Residence Inn which is 2 blocks from the clinic and directly linked via the tunnel system (the subway). We seldom took the car out of the garage. Where ever you go, ask for a monthly lease rate that way you avoid paying county room tax and check with your insurance, some will give a stipend towards lodging for a transplant.

Definitely bring the car! Easier that way to bring along what you need. Plus there are grocery stores, malls, etc., where your husband can get food and supplies! Rochester is super easy to navigate!

I’m curious about the isolation for 2 weeks. Is that actually in the hospital? Because usually, as mentioned, transplant patients are outpatients. We are admitted for the last 3 days of chemo right before transplant, but dismissed the day after transplant. Like I mentioned, we return daily for follow-ups. However, if there are issues then we’re immediately admitted to the Methodist hospital Station 9-4. That’s the transplant center. I loved being outpatient. I feel it contributed to a feeling of normalcy, not like a patient all the time. It was nice to be able to walk to my own fridge for snacks, take a shower at my leisure, things like that. I walked more at my ‘hotel home’ that I would have at the hospital.

The isolation period comes about because the preconditioning chemo received a couple days before transplant knocks out the entire immune system, leaving you very vulnerable to infection. About 2 weeks after the infusion of cells, the cells engraft into the bone marrow and set up housekeeping. At that point, when neutrophils begin regenerating, you’re less vulnerable but still have to be super cautious to avoid illness and infection.
From my experience and others who have had their transplants at a Mayo Clinic the isolation means having to mask up 24/7 and avoid exposure to people, pets and plants, mold/fungus and any food borne pathogens. No hugging either. It didn’t mean being limited to your hospital room for 2 weeks.

I’ll be away from my computer for the rest of the day but I’ll post things for you tomorrow about lodging, what to pack for longterm wherever you land and also for your hospital stay. Try to relax…we’ve got your back. ☺️