BMT at Mayo AZ — What should we know to prepare for transplant?

Welcome to Mayo Connect, @redheadelephant. Your mom will be in excellent hands with the BMT teams at Mayo. I’m not familiar with the AZ campus but I did have my BMT at Mayo-Rochester so I’m expecting their protocols will be the same. Outstanding BMT care!

BMT’s at Mayo are done as an outpatient. Your mom and caregiver will be expected to live within 30 minutes of the campus for 100 days or so…adding a week or two preceding the transplant.

To get you started with the basic information. here is a link to a Mayo Caregiver Blog for BMT/SCT/CAR-T patients. There’s an extensive menu of caregiving information so take your time and scope out each section.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/#ch-tab-navigation
After reading through the blog, let me know if I can help you with specifics. We have members who are familiar with the Phoenix campus and might be able offer suggestions for long term lodging.
I would expect that your mom will be contacted by Mayo and provided with an informational package with educational items, maps of the campus, etc. There is usually a meeting with a social worker as well to answer any other questions your mom and you might have. If not, then don’t hesitate to call the BMT department coordinator to get the info!

If you or your mom haven’t already, it’s important to set up the patient portal for her using her Mayo ID number. That portal is a lifeline between Mayo and your mom for all her information for appointments, test results and messages from her doctor and team.

Is your mom having a stem cell transplant using her own cells (autologous) or using donor cells (Allogenic)?

I’m scheduled to have my BMT on 1/9 with a 1/3 admission at Mayo Phoenix. My transplant nurse was great a communicating things I needed to know. She also tolerated my barrage of questions too. About two weeks before your mother gets admitted, they will schedule pre-admission testing. It’s three straight days that your mother will have tests, procedures, and educational consults scheduled all day long.

One of those visits is a hour meeting with your mother’s pre-admission transplant nurse. She will get another nurse assigned once admitted. The nurse provides a binder covers just about everything your mother may experience during her time in the hospital and the hundred days afterwards. On the front of the binder they provide a calendar that list all the procedures and medications she will be getting for each day. That is a meeting to attend with your mother. You’ll also meet with your mother’s assigned social worker, nutritionist, and finance,

As far as things not to bring:

Toot brush/tooth paste
Mouthwash
Floss
Nail clippers
Razors - you can use an electric razor
Game console - but you can plug a fire stick or streaming device into the tv. However there is no shelf or support if you bring something like an Apple TV. I asked about tie wrapping it to the tv mount and they said ok.
No appliances- coffee maker, refrigerator, etc

She did recommend:

Things to keep you entertained- books, music, puzzles, etc
Computer notebook, table let, etc. plan to bring a long extension cord for all the chargers
Mattress topper twin xl - she highly recommended this, but stated it has to be new, never used
Adult diapers - for when the diarrhea hits. They will provide them, but she said they aren’t very good. Most people prefer something better
Snacks
Outside food - they have a list of acceptable/unacceptable foods, but no leftovers since there is no refrigeration available. Supposedly, there is a shared refrigerator but it is only for drinks.
Room decorations.
Clothes - they do want you to get up, shower, and put on clean clothes daily. There are no laundry service, you you’ll need to arrange to clean you mother’s clothing at you home or hotel.

These are the some items off the top of my head. I’m going see if I can attach pictures of these paragraphs in the binder.

Hi @rv10! May I offer an official welcome to Connect. I see you signed on back in August but this is your first time posting. And what a fantastic and helpful reply for @redheadelephant as she helps her mom get ready for a BMT in Phoenix as well.

Thank you so much for sharing this information for the protocol at Mayo-Phoenix. It’s very much the same as I received 5 years ago in Rochester. It’s not easy planning for a long stay away from home.
There are a number of conversations in the forum regarding long term stay for BMT patients and caregivers. Here is a link to one of the replies and the threads that follow. https://connect.mayoclinic.org/comment/703859/

They are all found in this discussion I started a few years ago, which would be a great place for you to join in as you’re about to receive your BMT. You might find some of the replies helpful as you make your lists and gather your supplies.

~My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I know other’s will be surprised at not brining along a toothbrush, toothpaste or floss. There will be special foam ‘brushes’ required for daily oral hygiene. The preconditioning chemo and the transplant itself can bring temporary changes to the oral tissue. Brushes and floss can injure the sensitive tissue and be a portal for bacteria. So until you get the ‘all-clear’ those items are discouraged.

I’m curious about bringing a bed topper. Will you be an in-patient?
If you don’t mind sharing, what illness brought you to needing a bone marrow transplant?

I am local to the Mayo, so I will only be in the hospital for the usual thirty day or so stint. The mattress topper was recommended by the pre-admission transplant nurse to make the bed a little more comfortable. They just asked that it be brand new to minimize bring in anything nasty that could jeopardize your health.

I have CMML-1 and Smoldering Myeloma after monitoring MGUS for about ten years.

Oh, that’s interesting. There is a different protocol for Mayo-Phoenix. In Rochester, we’re out-patients for a BMT, only in the hospital for 3-4 days pre-transplant and then released the day after to lodging that has to be within 30 minutes of the clinic for about 100 days.
We’re seen daily for one or more visits, infusions, and such at the clinic. My husband and I relocated to Rochester for about 4 months and lived in a hotel suite about 2 blocks away. It worked out really well for us.
But now I understand the bed topper if you’re going to be there for a month. I’m suspecting Rochester may move to that protocol sometime in the future when the new cancer center is finished. Right now I think the space is pretty limited for long-stay inpatients.

Wishing you well with your upcoming transplant. Please don’t hesitate to ask questions or share your experience here with the rest of us! We can learn so much from each other.
You’re fortunate to live right near the Clinic. What are the requirements for your caregiver?

Hi @rv10. This is a big week of preparation for you. If I remember correctly, this Friday you start the pre-conditioning for your BMT at Mayo. Wishing you all the best as you go forward! You’ll come out on the other side of this with a second chance at life. It’s a humbling experience.

You’ll learn to trust your BMT team. They have your back through all of this and will do their upmost to keep you comfortable. Remember, you are not a bother to them! They want to know how you’re feeling, if you’re having any new symptoms, and such. Nothing is too big or too small to share with them. My team joked a bit but pretty much made the point when they said they wanted to know if I got a new hangnail.
And, I’m here for you along with the rest of our BMT group if you feel like sharing your experiences or have anything you’d like to touch base about. Do you have any questions as you get ready as you begin your final pre-transplant prep?