Preparing for Bone Marrow Transplant: My mind is racing

Welcome to Mayo Connect, Ava. I’m fairly certain that every one of us who have had a bone marrow transplant has felt exactly as you do right now with anxiety and a little fear of the unknown. I know I did five years ago when I was preparing for my allogenic stem cell transplant to help ensure that my leukemia didn’t return. The transplant worked to give me a second chance in life. I’m in a durable remission, cancer free and back to feeling 99% my former self! That last 1% could be that I’m also 5 years older and hit my 7th decade on the planet. ☺️

We have quite a few members in the forum who have had stem cell transplants for various illnesses…we’re all here to offer encouragement and support. I’m the mentor for the Bone Marrow Support group and want to make sure you feel comfortable and confident as you head into the transplant procedure.
What can I do to help you prepare? Are you having a transplant using your own cells or those of a donor? How about lodging…are you having to relocate to be near the clinic where you’ll have the transplant? What medical illness led you to require the transplant?

Hi Lori,
Thank you for responding. I found out last year just one month after my wedding in the Bahamas (8/9/23) we were still on cloud nine. I had several blood tests that were looking ugly, but it was after I returned home, September 2023, they confirm me having (high risk) Myelodysplastic Syndrome. They immediately started me on chemo and blood transfusions for the last few months. I'm working with a Case Manager trying to put everything in place. I'll be having to stay in Jacksonville, FL 100 days after the hospital release. I am using a nonrelative donor.

Hi Ava, oh my gosh, gurl! What a way to start out a new life together as a married couple. MDS is not the wedding gift you were hoping for…but it is a gift that keeps on giving, that’s for sure. Well, remember in your vows where you promised for better or for worse, sickness and in health…
You’re covering those two right from the get-go and after that it should be clear sailing. I hope you can bet back to the Bahamas for a 2nd honeymoon when this next adventure is over.
I had MDS’s ugly step sister, AML, which is something your high risk MDS could phase into so that’s why you’re having the stem cell transplant. It’s much better to do it now! I also know what it’s like to go into this knowing nothing, that’s why I’ve made it a mission to help anyone else having to go down this road.

We have very active discussions in the forum with those of us who have had transplants. This would be a good place to start where you’ll meet @alive @edb1123 @kt2013. @jenmkr63 @timt347 @jrwilli1 @tkidd51 @katgob and many others.
My bone marrow transplant story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
@mary612 started this discussion with her husband’s journey. He had his transplant almost 2 weeks ago.
Husband facing a stem cell transplant https://connect.mayoclinic.org/discussion/husband-facing-a-stem-cell-transplant/

I know what a hectic time this is for you with planning for a long stay, what to expect from the transplant and all those goodies. If you’re interested I can give you links to what to pack, useful items to take with you, post transplant guidelines, etc.. My transplant was in Mayo-Rochester so I don’t know much about lodging in Jacksonville. But I do know you’ll be in excellent hands with your Mayo bmt team.

Is there anything in particular I can help you with?

Ava,
I found in March of this year that my donor has agreed and i need to get my pretests done to make sure i am healthy enough or a transplant. Within a few days the transplant team was calling and setting up appts and letting me know my preconditioning starts April 2nd.
I know I did what I did with my 1st cancer 3 years ago, it is a day at a time.
Count sheep. Pray, tell your mind you need to sleep.
Tests? As long as i show up, the technicians know what they are doing. I let them do the test and follow their directions.
I had my transplant April 9th. Our minds will only rehash the nausea and fatigue if we let it. Once we are out of the 30 days, back at home or like me at my caregiver's house, i forget on some days i had a BMT. That is until I get out my pill tray for evening meds. That reminds me. Also, when i complete my twice a week checkup.
My MDS was low to medium when diagnosed.
You have a beautiful new husband to walk with you. Grab his hand and do this together as best as possible.

@avaleir
My husband is preparing to go through a Bone Marrow Transplant in Jacksonville as well. He has high risk B-ALL. We don't have an exact date yet but they are thinking around mid August. His son is his donor and has already donated his cells. We live just outside of Jacksonville but not close enough to be within their criteria for the first 100 days. Do you know where you will be staying yet? We don't have exact dates yet so we can't set any housing up yet. I wish you the best. We have a great team here in Jacksonville.

Welcome to Connect, @clock456 I had my transplant in Mayo-Rochester so I’m not familiar with Jacksonville. You’ve already tagged @aveleir so I hope they will respond to your reply about information about lodging and logistics in Jacksonville.
That limbo time between knowing there’s a transplant ahead and the exact dates makes it tough for planning. But once you get a firm date, all the proverbial duckies start lining up and things move along quickly. It’s the waiting that’s the worst.
One of the big hurdles for your husband has been cleared. Congratulations to him with having donor cells from his son already secured and frozen.

When you’re ready to get started, there are quite a few references I can give you for what to expect with the transplant, packing for long stays, etc.. There are a growing number of members in the forum who have had Allogenic BMTs and more than willing to help you in any way we can.

Do you have any specific questions about the transplant?

@avaleir, just checking in. How are you doing?

Hi @clock456, I just realized that @tkidd51 had their BMT at Mayo-Jacksonville. They may be able to give you a little more insight regarding lodging ideas and daily life around Jacksonville while your husband has his BMT.

While you’re preparing for next month do you have any questions or concerns?

Good morning, Ava. I expect you’re getting a little anxious about next week, with your transplant pre-testing about to begin. It will be a busy week! When you look at the portal and see like 20 appointments with tests, informational sessions and such, you’ll wonder how it will ever be managed. But it’s like clockwork with Mayo and an experience like no other. You’ll breeze through all of it. ☺️

This isn’t the way you expected to begin your newly married life together, I’m sure. But it is just a bump in the road. There are many of us in Connect who have been down this BMT trail so don’t hesitate to ask any questions.
Is your lodging all set?

Yes, I had my BMT at Mayo-Jacksonville. Wonder doctors and nurses. My transplant doctor was Dr.Murphy and one of my favorite nurses was Dom, The care I received was fabulous and I can’t thank them enough during the most difficult time in my life.
I went through Corporate Suite Shoppe to locate an apartment to stay in after BMT. The apartment complex was super close about 10-15 minutes. Google for the phone number and tell them I (Tammy) sent you and that you are a Mayo Clinic patient. If you have any questions, please let me know. If you can’t find the phone number I can look through my files to find it and the exact apartment I stayed in. The apartment was fully furnished, and my caregivers made it feel like home with personal items. I wish you all the best and keep the faith. You are in the best hands to help you through.