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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?
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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.
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1 ReactionWhat 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.
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4 ReactionsI'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?
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1 ReactionWaiting in limbo. Admission was scheduled for today but postponed. Pre-transplant testing was normal but insurance gave a denial. Waiting, with my caregivers after having moved us far from home to near Mayo. Appeal will be in about two weeks. I was blown out of the water and caught off guard by the denial.
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2 ReactionsJust seeing what information gets posted before I share as I'd like to share without giving my name or email
We faced blood sugar issues post-ASCT when starting Bactrim and are likely looking at Pentamidine treatments instead. We have been working with a diabetes team at Mayo. The continuous glucose monitor they put in on Day +20 gave us immediate alarms, and allows them to analyze the data and suggest adjustments to insulin and eating habits. Still, the antibiotic therapy needed changing even after we are home from Rochester.
Recovery is a long process! We like to look back at how far we have come…
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3 ReactionsWe are at home, and my wife, the patient, is doing well.
Pros: Low cost. Isolation from random infections — we successfully avoided infections and hospitalizations. Nearness to Eisenberg — we walked over (pushing my wife in a wheelchair) every day. Parking was free and available. They had a nice prayer room and Yamaha keyboard. The staff and volunteers were great. The blood draws at GOL were convenient. The public spaces in the house and the grounds provided ample room to move about and avoid cabin fever. The company of other transplant patients felt good. You can get mail and packages there.
Cons: Rules are strict and take some getting used to. A significant number of residents move through quickly. Rooms are small. Beds are small. Providing your own supplies can be difficult. Room availability isn’t guaranteed. Stays can end suddenly if anybody becomes contagious.
We spent a preliminary eval week there three weeks before the transplant, so we knew what we were getting into. It was an excellent choice for us.
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