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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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Good morning, Miss Kat! I seem to recall last year around this time, you were concerned you would miss out on future retreats like the one you attended this weekend!! I love seeing posts like yours that show life can return to normalcy after having a BMT. It just takes time and patience. Your first Re-birthday is right around the corner and you’ve have been an exemplary patient for your BMT team.
Going back into mainstream medicine for routine care was an eye opener to me. As BMT patients we get spoiled with our dedicated devotion with our BMT teams and oncology teams. I’m finding, not so much with my PCP. He gets a bit prickly when he has to defer to requests/orders from my transplant doctor. My local oncologist works really well with my Mayo team…no issues there at all. But my PCP is another story.
Until about year 3 post-transplant, my local oncologist was my primary care physician but I was still having 3 month followups at Mayo. So basically anything I needed was done through Mayo. When I finally went to the primary care clinic where my family has gone for years, I had a new doctor, to me. I introduced myself and let him know I had a BMT and explained that he would be part of my care team. My ‘boots on the ground’ locally but that he may have to defer to my transplant doctor from time to time. I asked if he’d be ok with that. I realize this puts him in an awkward position of not necessarily being ‘primary’. But our primary doctors need to be team players. So when my transplant doctor put in a direct order for a medication that my primary doctor didn’t want me to take, my primary got prickly with me.
We had a long face to face talk and hoped we reached a truce after he said he now understood better why I was given the medication and he’d work together in the future.
Well, that was last April. Since then I’ve had 2 occasions where I’ve contacted that office for assistance and there was no response at the time until about 2 weeks later. That wasn’t helpful! 😅 I ended up both times calling my BMT NP and got immediate help.
I have annual PCP visit coming up in a couple weeks. I’ll see how this appt goes. If he’s still going to all Dr Crabby Pants, then I’ll opt for another clinician in the office.
It is comforting to know our BMT teams, in most clinics, are dedicated partners for life. We are forever changed with a BMT but we can have full and much appreciated 2nd lives ahead of us. We just need some special TLC from time to time.
I’m so happy for you, Kat, that this year has been such a success story. Wishing you continued wellness!
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2 ReactionsThank you for this info, Lori. I feel very comfortable with my NP in the BMT department. I am getting the Gyno with a female at COH through the year anniversary tests i must complete. This year celebration has a name in the BMT world, but i need to go online to see the name. I am calling it an anniversary. It does sound interesting the way the primary office is a bit different then the care we have gotten from our BMT departments. The new PA i had was just assigned to this Dr. I realized the primary i had gone to in June of 2021, was my first time at that office. I had the PA there and never met the DR. I suppose i will make a call at some point during this year, but so far i will be getting any scans and blood results in the coming month that will let me know my bodies current condition.
Mr. crabby pants. I remember going to a dermatologist for the 2nd time on the very day i gave up smoking. On that day the whole experience did not sit right. My prior Dr. was wonderful but moved. As i was leaving that day he said to make an appointment for 6 months. I thought for just a minute and thought, heck no. I left and never returned. I found a new Doctor. That day was the "Great American Smoke out" sponsored by the American Cancer Society. 1998- I quit that day and have never smoked again.
We find the Doctor that is right for us.
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5 ReactionsHi Kat, A few names I’ve heard over the years in recognition of our re-birth days: Transplantaversary, Celliversary, Cellebration day, Celebirthday (like celebrity).
Have any big plans for your big day?
Those are fun names Lori. I have not planned anything, but i think i will. Go to the beach and enjoy the sand and all the beach surroundings. I look forward to the 49th Bone Marrow Reunion. I was getting treatment on that day last year, but i saw the crowds.