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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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Hi Deb, I hope you’re coming out from the dark side of the moon by now. That’s what I considered the period between transplant and engraftment. 😅 Not sure what your age is but I grew up in the time of the moon landings and there was always that tenuous time when the spacecraft was on the back side of the moon and all communication was lost…then boom! You’re back on the sunshine side of life again.
Let me know how you’re doing! How’s the nausea?
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1 ReactionHi Mary and Dane! It’s been over a month since we’ve chatted. Thought I’d pop in for an update! Hopefully all is going well with the A/V maintenance. Were the CBD gummies an option?
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1 ReactionGood morning! Well, now it’s day 88! I was off the computer yesterday so I didn’t see this! Wow, I can’t believe your husband is cruising up to date 100 pretty fast!
Aw, gosh, I know he’s been suffering with the hand tremors all along. That can be really common with the tacrolimus. Hopefully, as he tapers off that med, the tremors will dissipate. I looked back in my journal and once I began the taper, it didn’t take long before there was a noticeable relief. I was actually on low dose tacro for 2.5 years so I had a little tremor (not as disruptive) for that length of time.
I also had issues with my kidneys while on the tacro. From my understanding, it can reduce the blood flow through the kidneys which interferes with kidney function. After stopping the tacro that totally reversed itself too. It’s an important life saver med for us in early months of BMT, but obviously not without some pesky side effects. As @katgob mentioned, keeping up with a good volume of water daily can help keep the kidneys flushed.
Going home is the most amazing feeling. It was a 4.5 hour drive to home for us. The nearer we got to my city, the more the tears began to flow. Good thing I wasn’t driving! I was a blubbering mess by the time we hit our driveway. And then…my neighbors were all outside to greet us! Sniff sniff.
You get to click the Ruby Slippers 👠👠There’s no place like home! (I’m hoping you’ve seen the Wizard of Oz!) 😂
Thank you for the awesome update!
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4 Reactionscaregiverx2- 87 days down. Amazing, isn't it? Oh my. Every medication we come off of does feel good. Kidneys? I still have to drink over 100 oz. of water for my kidneys. My Dr. does not want me to kill my kidneys. The tremors I hope are a result of the tacro. That would be the best result.
The day i got home was the BEST day. My cat had passed away, but Home has made the nearly 4 months heaven. Build in exercise daily. Keep us posted.
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4 ReactionsMy husband is on day 87. Everything is going well except for some issues that may be caused by the tacrolimus. He should start tapering off the tacrolimus at day 100. We are hoping this will relieve the kidney issues and the hand tremors. The time has flown by. Can't wait to get back home.
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4 Reactionsnjhornung- What a thoughtful neighbor. It reminds me of my mom. We had a skit at a women's conference i attend, that had a "SPA" theme. I talked with Mom on what we needed and what i might do. We found thick nice robes, and my mom made the dozens of cast members the wrap for your head. They were beautifully made and the ladies and most of them told me how special they felt. The loved them. My mom helped with many projects. I bet your neighbor was a kindhearted soul who loved bringing joy into the world too. One head cover at a time.
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2 ReactionsLori,
Yes. The magnets are on my old-style breadbox. They are so thoughtful and nice. I am happy to hear you have bought from them as well. They wrap it beautifully in tissue and tuck in the special magnet.
I plan to get a couple more items as my Christmas gift to me!!
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1 ReactionThat was really sweet of your neighbor to make those head coverings to donate. They’re much appreciated by cancer patients…
I’m so sorry to hear that she’s passed away. Her kindness lives on, I’m sure! Who knows how many of those caps are still in use?! Even though my hair has grown back, I still have some old chemo caps that I wear when out walking on chilly days when a wool sock hat is too warm. I bet you miss your neighbor, she sounded like a very lovely person.
My former neighbor used to make head covers from old t-shirts. These were given to a local wig store that would then give them to cancer patients. This neighbor, a former cancer patient, has since died.
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2 ReactionsHi Kat! Thanks for checking in! It’s always encouraging for our fellow BMT peeps, especially the newbies to get these positive feedbacks!
Headcovers.com was my go-to place for great headwear too. They have some really cute hats, scarves, wigs, etc. and are so helpful. I still have some of their emotional support magnets on my refrigerator. Do they still send those along with the orders?