My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?
The past two years have been a storied journey of facing Acute Myeloid Leukemia and a subsequent bone marrow transplant. Being in a high risk category for relapse for AML, a transplant was necessary. Simply put, it would provide a completely new immune system to fend off any remaining AML cells lurking about in my body, after my original factory installed version had become defective in recognizing them. My husband and I shared a collective sigh of relief with the news that my latest bone marrow biopsy, at 19 months post transplant, showed no AML or the mutation which caused it. My new immune system is working!
While celebrating the results with my husband and a pizza, it occurred to me how far I’ve come and how life has changed in the past two years since the onset of AML and the transplant. There have been some challenging transitions but none insurmountable. Of course, life as a genetically modified organism, with two sets of DNA and a new blood type, can have its turf wars with a few GvHD issues, adaptations to medications and such. But I’m incredibly happy to have a second chance with this generous gift of life from an anonymous donor, and through the medical expertise of my amazing BMT-team at Mayo-Rochester. Hopefully I can meet my donor someday to thank him in person. I did send him a card right after the transplant giving him my “undying” gratitude!
We’ve all been given a gift of life. I’d love to hear your story. Lori
What diagnosis brought you to a BMT?
How has it impacted your life and that of your caregiver?
Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
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.
I'm relieved to say that our son Alex is now back home with us. Blood counts continue on their upward trend. He has responded well to Voriconazole!
My question now has to do with Depression ; could be a side-effect of some of the many medications he is currently taking or could be something else. Today is Day+63 and his appetite has returned for which he is grateful. Any experience with Post-BMT Depression?
Grace, that’s awful to be so close to transplant and have the rug pulled out from under you!
Was there no indication it wasn’t approved before yesterday? Had your insurance paid for pre transplant testing and then actually denied treatment? Wow!
May I ask what condition led you to your SCT? Is this using your own cells or a donor?