BMT for multiple myeloma and have questions about Caregiver

Posted by swansm50 @swansm50, Sep 26, 2022

A bone marrow transplant is on my horizon. I have been diagnosed
with Multiple Myeloma (light chain) in June 2022. I live in northern Minnesota. I have family but they work and have families. I don't know how I will find a caregiver to stay with me while in transplant house. I don't know what to do?

Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.

Hi @swansm50, and welcome to Mayo Clinic Connect. It looks like your diagnosis with multiple myeloma was fairly recent. That is a blood disease which can take many years to develop to the point where it requires a bone marrow transplant. So I hope you have several years before you need one. But when you do, yes, from my experience at Mayo for a transplant, you’ll need to have a dedicated caregiver when undergoing the transplant process and recovery while in Rochester.

You mentioned you do have family but they work and have their own families. I’m wondering if, when that time comes, you’ll be able to tap into those resources. It wouldn’t have to be one person for the entire length of time, which is generally about 6 weeks if you’re using your own stem cells. You could have them divide the time to stay with you. You could possibly ask a good friend as well.
You’ll need someone to accompany you to daily appointments at the clinic. They will also need to help you to the bathroom if you’re weak and to make your food, get supplies, etc. There are times during the transplant process where you’ll be too tired to do some of this unaided.

You might want to check in with @lmindela from the Concierge Services at Mayo. The phone number for the Concierge Services 507-538-8438

Live Chat: https://www.mayoclinic.org/patient-visitor-guide

Email: concierge@mayo.edu

Concierge may have some suggestions for you as I know there are patients who do come solo.
Did your doctor give you a time frame for when you might need a transplant? Are you currently taking any medications such as Revlimid?

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@swansm50, When I was at Mayo Rochester for 11 weeks before and after my liver and kidney transplant, my husband and i lived at the Gift of Life Transplant House. There were some patients with a single caregiver, and there were others who had a team-like approach where relatives and friends (one at a time) coordinated schedules so that the patient was able to have a 24/7 caregiver as required.
Here is a discussion that might give you some creative ideas from other members:
-Transplant Discussion Group - What was your caregiver situation while getting a transplant?https://connect.mayoclinic.org/discussion/caregivers-for-people-undergoing-transplants/

If you have any questions about staying at the Gift of Life House, let me know. My experience was a good one.

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I had a BMT in June. My care giver got sick and could not take care of me for 2 days. During that time, I was placed inpatient. If you do not have a care giver, I wonder if you can be inpatient?

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