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

Posted by Lori, Volunteer Mentor @loribmt, Feb 14, 2021

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.

grace | @recipientofgrace | Oct 4, 2023

Just seeing what information gets posted before I share as I'd like to share without giving my name or email

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grace | @recipientofgrace | Oct 4, 2023

Waiting 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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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 5, 2023
In reply to @recipientofgrace "Waiting in limbo. Admission was scheduled for today but postponed. Pre-transplant testing was normal but insurance..." + (show)
@recipientofgrace

Waiting 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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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 reply
leilab1 | @leilab1 | Oct 6, 2023
In reply to @loribmt "Hi @leilab1…I’m always so cautious when tossing out ideas because I am not a doctor ‘nor..." + (show)
@loribmt

Hi @leilab1…I’m always so cautious when tossing out ideas because I am not a doctor ‘nor do I play one on TV 😅” but there are things I can say from experience which may sometimes give a nudge to someone else…that’s all. ☺️ I’m happy if this change in meds helps your son.

I also hope I can ease your concern over the Pentamidine treatment. This is important for him to receive monthly. It’s a breathing treatment meant to protect his lungs from serious Pneumocystis pneumonia that can develop in immunocompromised people. If the treatment does increase his blood sugar his team will be on it and treat accordingly. But don’t let him skip this treatment.

You have to understand, at this point in his transplant, all the rules for what you know about ‘normal numbers’ are off the table. He’s going to have blood numbers, liver numbers, kidney numbers, etc… going up and down for the next few months. Everything in his body is in a state of flux.
If his glucose goes high during a treatment don’t worry about it. This doesn’t mean it will change his numbers for the rest of his life. And if so, then that will be dealt with at the time.

Honestly, it sounds as though Alex’s recovery is really becoming routine and he has a great team on top of everything. I think you can start relaxing about his recovery. ☺️. Though, don’t be surprised by a little excitement tossed in from time to time.

I learned the key to survival with a bone marrow transplant is to always keep flexible, have a sense of humor and a sense of adventure. Life is never boring. But there is a life…Alex will come through this on the other side and he’ll feel pretty invincible for what he’s gone through, overcome and survived! I’m 69 and feel like Wonder Woman… sigh…but lack her body. 🥴

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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?

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2 replies
alive | @alive | Oct 7, 2023
In reply to @leilab1 "I'm relieved to say that our son Alex is now back home with us. Blood counts..." + (show)
@leilab1

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?

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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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grace | @recipientofgrace | Oct 11, 2023
In reply to @loribmt "Grace, that’s awful to be so close to transplant and have the rug pulled out from..." + (show)
@loribmt

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

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1 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 11, 2023
In reply to @recipientofgrace "Allogeneic/donor cells. Hoping it goes well with the insurance phone call next week" + (show)
@recipientofgrace

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

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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?

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grace | @recipientofgrace | Oct 11, 2023

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 reply
Mentor
Lori, Volunteer Mentor | @loribmt | Oct 11, 2023
In reply to @recipientofgrace "They need/,want to give me fresh cells so the donation had to be cancelled. They approved..." + (show)
@recipientofgrace

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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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?

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grace | @recipientofgrace | Oct 11, 2023

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.

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