@caregiverx2 Welcome to Mayo Clinic Connect! I’m so glad you found this site especially given your reluctance to use social media. I’ve posted 2 discussions for you to check out. One is for caregiver advice
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
And this one is about the journey. It was started by @loribmt who is a mentor for Mayo Connect. She is great at answering your questions!
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I hope this will be a good start for you. Please feel free to ask any questions you have! BTW, how did you find Mayo Connect?

Hi @caregiverx2 I’d like to add my welcome along with @becsbuddy. She tagged me in this conversation because I also had an Allogenic stem-cell transplant, along with several other members. We have a lively, ongoing discussion where you’ll be able to get a ton of information to help navigate you through this journey with your husband…everything from lodging, what to bring for a 3 month stay, how to stay healthy, etc…no subject to big or two small to answer! We have your back.

I’d going to ask our moderator to merge your discussion into this group, which Becky mentioned:
My Bone Marrow Transplant Story; Will you share yours?
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
You’ll meet members, @alive @edb1123 @kt2013. jenmkr63 timt347
@jrwilli @katgob and others who have either had a transplant or are caregivers.
Will he be having this done in Mayo Rochester?

Dear Caregiverx2, welcome to the “family”. I am an 11 year survivor of acute myelocytic leukemia (AML) and peripheral stem cell transplant from my sister. I was cared for by Mayo Clinic, so I think you are at the best medical center in the world.
Here are a few things I learned on my journey…
I also thought I needed to research and educate myself on all things about the disease and treatment. What I discovered was it was too overwhelming and I needed to trust that the Mayo team would provide me with the education I would need, based on my cancer and planned treatment. The internet wasn’t a good place for me to hang out, it made me worry more and it was exhausting to try and sort out what applied to me and what didn’t.
Another important lesson for me was to stay in the day. Again, as a world-class worrier, it tried to control what was not within my control. So, I learned to breath through the tough days, then lock them in a closet. And to celebrate every day, good or bad. Being a woman of faith, I leaned into that like never before. And in this, asking for strength and guidance to face each new challenge.
Mayo health care team members were with me every step and that made my path easier and the challenge manageable.
I hope my words will bring you comfort and know that I will keep you and your husband in thought and prayers.
Sending you a sunny day….

That’s a tough diagnosis! I had acute myeloid leukemia 8 years ago and had my stem cell transplant 5 months later. My donor was found in Germany. Recovery after SCT is rough but so well worth it! I also had a number of complications including GVHD, but I am now leading a full life. I have been working full time for the last 5,5 years. I still live with some limitations due to leukemia, chemotherapy and SCT, but I am very glad I received my transplant. I wouldn’t be here without it.

Let me know if you have any specific questions about SCT or the recovery from it.

Im glad you found this site. It has been a god send for me. Lori is a blessing and I have frequently used this site and yes I’m not a social media person and most don’t understand. Hugs

Eleven more days until my husband goes back in the hospital to start his countdown. Day 0 will be August 21. Getting nervous. I was okay until the transplant coordinator gave us the chemo schedule and started talking about preventing seizures from one of the drugs. She said, "don't be alarmed when you see padded rails on the bed." Then she informs us that I can't be in the room when he gets the stem cells. I will have to wait down the hall. This added to my concerns. Do they expect something bad to happen? I know this are just precautions and we have a really good team. However, recently they scheduled an appointment to put my husband on chemo pills for maintenance until his transplant. This was on a Friday. He started the pills on Saturday and spent Saturday night and Sunday throwing up. Then we get a message on Monday, saying STOP taking the meds. The doctor didn't realize his transplant was so soon and he needs to be off the meds for two weeks prior to chemo. This did not reassure me. Didn't he check his chart before issuing instructions concerning medication? So, I am getting stressed trying to coordinate everything for the 100 days post-transplant since my husband can't go home. We have no family here to help. The help I thought I might have didn't work out. So, I am working on hiring people. Boy, is that expensive. We have animals that need tended to. I have a job I have to keep so we have insurance. I know everything will work out. These are just a few of the stresses that are going through my brain right now. Thanks for letting me just vent. I know all this is a normal part of leukemia and SCT care but this is all new to me.

Tomorrow (8/16/24) starts day -7. I feel unprepared and anxious.