My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

Hi @tjakusz You’re right, this is a journey like no other. It’s arduous and there will be days you feel pretty nasty. But it’s all doable! You come out on the other side of this feeling pretty invincible. Keeping a positive attitude is so helpful as well as really listening to your BMT team! They are your new family and they are deeply dedicated to you. I’ve been told repeated at Mayo that ‘we’re married for life’ and they mean it. I’m still having regular followups at the clinic and also through blood work at my home clinic. It’s very comforting to know you’re not left to founder after a few years.
Rochester is my home away from home. My husband and I still enjoy our trips back to ‘the mother ship’. While I was going through all the excitement my husband kept busy daily with long walks along the trails there, exploring the various cultural sites and really felt like this was a unique experience for both of us. He and I both got all the backing we needed from our team.

You’ll also be having a number of pre transplant classes along with testing. It will seem daunting but you’ll get through this…one day at a time.

Here are a couple of links to conversations about prepping for transplants and after care.

The first was in a list I compiled for transplantation while I was at Mayo-Rochester for 4 months. Other members have added their ‘necessities’ to the lists in subsequent conversations.
https://connect.mayoclinic.org/comment/703859/
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
This is a really comprehensive aftercare guide from Memorial Sloan Kettering. I had a very similar list from Mayo but this was already online so it’s my go-to guideline.
You’ll no doubt have your own educational classes and information for life going forward.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
There are other friends here in the forum who have also had allogenic stem cell transplants a few of these are: @alive, who just celebrated her 7th rebirthday, @kt2013 who had her transplant 10 years ago, I’m at 4 years and @edb1123 who is coming up on her 3rd anniversary.
Don’t hesitate to ask us questions. We’re here to offer support and to help you (your caregiver) navigate this journey. It helps to talk with others who have walked the walk.

this is SO helpful! Thank you so much! Yes, I would love to read on tips and suggestions. This is quite the journey, so any helpful tips would be most welcome! Thank you so much!

Hi @tjakusz Welcome to Connect! You came to the right place for information and, for your BMT. I had my BMT at Mayo-Rochester and can’t imagine a better place for treatment. I’m 4 yrs 3 mo post transplant and feeling amazing. In fact, I just got back from a followup appointment and everything is stellar.

I’m not familiar with any other places besides Mayo who do BMT as outpatient. But from hearing other stories and compare them with my own, the model Mayo has set up is excellent. Having limited time in a hospital allows for patients to recover faster in a ‘home’ environment. Your exposure to infections is less, you can get up to scrounge for food in your own refrigerator, you walk more, have privacy, etc..
You will still report to the clinic daily for blood work. Just because you’re out patient doesn’t mean you’re left on your own. You will need a caregiver with you 24/7. If there is the slightest issue you will be re-admitted to the hospital. There’s no question about how seriously they take your condition!

My husband and I set up housekeeping at the Marriott Residence in. We got a 2 bedroom, 2 bath suite so I had my own room. It’s connected via the Subway system (underground walkway) to the clinic. It was an easy walk or wheel chair ride to the clinic daily. (You can use the wheelchairs from Mayo to take back to your hotel)

I have lists of things to consider for what to bring for the 3-4 months you’ll be living away from home, precautions for staying healthy, etc.. I’ll find those posts and link you to them.

I know @edb1123 also had her transplant at Mayo Rochester so she may have things to add as well. I think we’ve both posted earlier in this discussion so if you’re interested in doing some reading a lot of the information is there.

Am I right in that you’re going to Rochester or are you at another campus?
Do you have any specific questions?

Hello, I am new to Mayo and transferred from City of Hope (long story). I am preparing for BMT due to MDS that had progressed to AML, but AML is in remission after Azacitadine and Veneclexta. Was wondering how those who have had the whole transplant process here outpatient handled it. Everywhere else the first 30 days are inpatient. I believe Mayo is the only one to do it outpatient. I know you need to be within 15 min of hospital and come every day but still concerned how it went. Anybody have experience they can share please? Thanks so much!!

It's a type of leukodystrophy that impacts the microglia. The transplant gives fresh stem cells to take on the roll of my dying support cells in the brain. Nerve damage occurs from the microglia not functioning well and dying off. Mayo had a news story a few years back on someone who did very well after a transplant for the condition.

I can emphasize with you over this having to wait!! You just want to get it over with. I’m so sorry this has happened and hope the insurance company sees the light!
Would you mind sharing what diagnosis led you to needing the transplant?

They need/,want to give me fresh cells so the donation had to be cancelled. They approved consults with the BMT physicians at two institutions who both said I needed the transplant. It's a rare dx but they hadn't had problem getting other transplants approved for the same. It's frustrating and anxiety provoking.

What a crazy setback for you. I hope your insurance comes through with this! Do you know why it was declined? It is mystifying that your insurance okayed all the pre-transplant testing and then denied the transplant. This really messes with the logistics of so many things. Do you know if your donor already went through the process of harvesting cells?
Please keep me posted on your progress, ok?

Allogeneic/donor cells. Hoping it goes well with the insurance phone call next week

My post-transplant depression was due to the trauma of dealing with such a debilitating cancer and treatment. Also, snail-pace recovery was very discouraging for me.

I don’t think my depression was medication related.

My recommendation would be to ask your son’s BMT team for a referral to see a therapist. There are so many things that could be bringing him down, but he needs a therapist who works with transplant patients.

What worked for me was healthy diet, walking, praying and reading. Setting goals that were reachable also helped me see that I was improving.