Can anyone share their bone marrow transplant caregiver experience?

I am 71 year old and am going in to get a bone marrow transplant in a couple of weeks (mid December 2022) at Mayo Clinic Scottsdale, AZ. If you can offer any advice or tips on how to get through this I would be very grateful. My son donated the stem cells and was a 50% match. Thank you

Hi @maguiregirl Welcome to Mayo Connect. There are a number of members in our forum, including myself, who have gone through the bone marrow transplant journey.

It’s wonderful that your son can be your donor…it’s like a circle of life! He’s able to give you a second chance at life with the donation of his cells.

I’m going to give you a few links to get you started with some reading. This is a discussion I started last year that you might find helpful. This is where most of us who have had a transplant are chatting with each other about our experiences. Feel free to jump into any conversation!

My Bone Marrow Transplant story: Will you share yours?

Since I’ve had my transplant I feel like it’s a personal mission to help others navigate the transplant experience. I was fortunate to be able to assist a young woman earlier this year. Here is our story!

You’re having the transplant done at Mayo Scottsdale so you’l be in excellent hands. Your transplant team will become your new family. As you near the time of transplant, you’ll first have some pre-transplant testing along with educational classes to help prepare you for your new cells.
Are there specific questions you might have? Please feel free to ask away!

Are you all set with your patient portal?
Have you found your long term lodging near the clinic?
Who is going to be your dedicated caregiver?

I am all set up with the portal, and live about 40 miles from Mayo. My husband is going to be my primary care giver with a few wonderful friends chipping in along the way. We must have made 100 + trips back and forth so far in this last year. I actually was hospitalized there for 8 days (severe bone pain) in March 2022, and 23 days in Oct-Nov (when my immune system was so low and I had a fever). How long was your stay in the hospital when you had your transplant? Did you have any surprises you didn't expect?

Thanks for your reply, Debbie

Hi @ryanman0 Thought I’d pop in this morning to see where you and your dad are on his transplant journey. Last time we spoke you were looking for answers about caregiving and where to stay when he has his transplant.

Have you been able to make lodging arrangements? Do you or your dad have any questions about what’s coming up? And, the biggie, when is his Rebirth date planned?

Good morning @ryanman0 I just wanted to check in with you to see if your dad has had his bone marrow transplant and how he’s doing! Do you have any questions?

And how are you doing as his caregiver? Were you able to get all the arrangements made for your lengthy stay as his caregiver?

Good morning, @maguiregirl I just wanted to check in to see how you’re doing post transplant. For some reason I never saw this reply and I’m ashamed I haven’t written sooner!

How are you feeling? Those first few weeks can be a real challenge with nausea and fatigue. But I promise it gets better! Let me know how you’re progressing and I promise to keep a hawk-eye out for you! Hugs!

My sons transplant was at MD Anderson. My son was inpatient for approximately 2 months. I stayed with him the entire time. At this hospital there was a Murphy bed for the caregiver. They had a menu and you could order up food any time they called it room service. I did gain weight...lol. I was allowed to come and go as I pleased. I could go out of the hospital and return. We had to stay in Texas for the following 3 months after transplant. I had rented an apartment. I learned to do infusions at the apartment and change the dressing on his port/luminen lines. Anything to not to have to go back and do these things at the transplant center. My son was very tired/weak, and each day he would do a little better. There was a starbucks at the hospital and i would get my son 2 protien shakes a day. Helped with his intake. My son had his own video game system with him. It's hard to say what your amenities will be as each hospital is different.

Hello - my husband had two stem cell transplants. We were in Baltimore. I hope things are going well for you and that you’ve already found the answers to your questions. I stayed with my husband in his hospital room from time to time and once released we lived in a sort of Ronald McDonald house but for adult patients and caregivers that was attached to the hospital. I learned: becoming close to other caregivers is key. You’ll have a lot of time when your loved one is getting blood or platelets and you don’t need to be there. Work, get coffee, talk it out with others. We joked that our lives were like the movie Groundhog Day, because they were the same nearly every day. But we could change the way we faced each day. One serious piece of advice: don’t leave your loved one alone for any length of time. I’m sure you’ve been told not to do that, and it’s very true. I went to get a haircut and needed someone to walk my husband from the infusion center back to our apartment. Another caregiver with free time stepped in. That was the day my husband went into toxic shock and was rushed into critical care. Thank God that I’d heeded that advice and that my caregiver friend Drew was there for my husband and recognized that he was in trouble. He survived and we are 6 years out from the second transplant. Best of luck to you. You can do this. One day at a time. God’s blessings to you today.

I'm waiting for a bone marrow transplant. Also waiting to see if one of my siblings is some sort of match. I'm so grateful this discussion is here because the first several months of transplant screening at the Mayo was extremely intense, both for me and my family members. So far, there is no donor match for me. The information here on caregiving is great. I would like to point this discussion to some of my family members and my caregivers. While I still need to read more about bone marrow transplants, I'm extremely uneasy, still, about whether or not to go thru with it.
I lived 25 years with Essential Thrombocythemia and it morphed into PMF last year, very aggressive with the worse kind of genetic markers. actually. While Im extremely thankful to have the very very BEST in care up at the Mayo (Outstanding hematologists and transplant doctors), going into transplant is no easy decision. I've been screened and re-screened and interviewed until their entire team felt like I was going to be a good candidate. It was absolutely exhausting. Now theyve drug tested me and threw me into some "surprise" psychiatrist visits. Sometimes I feel like they have really pulled the rug out from under me, but no, the disease did that. I have some great days when I can tell myself....this disease will not define me. The things they need to get done are extremely important...yet I feel (when i take these pre-transplant trips up there), that they are taking me out of my comfort zone, not able to sleep well away from home, then throw some random testing and psychiatrist meetings (of whom I do not have any personal history with)...so its like throwing me into the lions den. And I absolutely feel that they have no compassion for what "out-of-towners" go thru. AT this particular point, I'm considering putting off the transplant, but want to wait to see what kind of bone marrow donor they may be able to find. I've had nothing but raves and great words expressed from these doctors about how well I' m doing while on my special treatment drug (in pre-transplant waiting). ....this is just a great story unravelling.

@cupofsunshine. What a great name you’ve given yourself! I don’t know anything about transplants so I want you to go to this group and ask anything you want:
https://connect.mayoclinic.org/group/transplants/
@loribmt is the mentor for the group, and as a bone marrow recipient, she can answer all your questions.
It must be so stressful for you at this time, I can’t imagine. Everyone on Mayo Clinic Connect has had a very hard time, but all the other members help them through it. I had lesions on my brain and really wanted to quit butt here I am!
I know you can do it!