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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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Yes, I originally had the knee high. The original dr never said different. When i still had a swollen ankle after 6 months on Eliquis and another thinner, I asked for a referral to the vein specialist. It was there I was told surgery was not needed for my DVT but I needed to wear a thigh high stocking as the DVT is on the back of my right thigh. I was also sent to be fitted for the right size.
I will try putting my leg up daily. I sit for my workday, walk a lot, but do not raise my legs as you suggested. I have found that without seeing certain drs, this issue never was taken about in the hematology department. It is about blood in hematology, so i added in the portal after my visit about this DVT.
And yes......
So yes, there are those little reminders from time to time that let us know we’re not 100 percent our former selves…life as a chimera, eh? 😅
My CMV results have not been posted. Looks like that department had a couple days off!!
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City of Hope nurses got me a huge glass of ice cubes and a cup of popsicles and told me during the chemo to keep my mouth frozen. Keep it full of something cold and it will stop that chemo from taking hold in my mouth. I never had cold sores. Not a one.
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1 ReactionAh ha. My second CMV is 336. I got the message a new test result was in and i went right in to see the result. As i was typing a note in the portal, my NP Hannah called. She just got it and knew i would have a question. I am going back in Jan 31st, so if i hit the magic number of 500, my body may get the other pill. My donor fellows' cells are slow moving in there. Does he like shingles, chicken pox and herpes? Geez guy!! There just could be people in my neighborhood stores with any one of these illnesses as any time. Being honest, I have not worn the mask 100%. This is my reminder.
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1 ReactionWell, your CMV is a sneaky little dickens, just creeping up slowly. It will interesting with the next result to see if the numbers are up or down. Fingers crossed for a decline ☺️.
If you need another med, they aren’t generally long term.
It is a nudge to be more vigilant with the masking if you’re out in public though. Especially if you’ve not been feeling quite as energetic and healthy. A few months ago you started the post-BMT immunization protocol. Vaccinations can tax the immune system while it’s working to recognize and defend against the real thing! Even though you have a new immune system, it will never be as robust as the original factory installed model. So hang in there, Kat!
This is a time for no-guilt vegging during the day.
Truth be told I don’t mask 100% either. But if I’m out in stores, elevators, or close proximity such as a meeting, I do wear my mask just in case. I heard that measles, whooping cough and mumps are on the rise, besides the obvious covid, flu, noro virus and RSV. You’ve not been vaccinated yet with the MMR (measles, mumps and rubella) so you definitely want to avoid those. Ugh I got stuck in the elevator with a family that scooted in just as the door was closing. Little germ bombs!! I was so thankful I had my mask on because they were all coughing! I must have looked like a deer in the headlights as I shrank back into my corner. 😂
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2 ReactionsThat is funny about the elevator. I know vacationers are in Florida and all over the East coast too. I am glad Covid brought in masks, and in California, the Asian community has always worn them, so it is not big deal here. I would hope a pack of coughers would shy away and stick together. It is surprising how many go out sick and coughing including parents and kids with no masks.
I have had vaccinations every visit as you said for months, and on the 17th i had the 2nd of the kid ones. I have one scheduled for the 31st. I started making a chart for my vaccines that i realize i did not update after I stopped asking for the papers with each vaccine's info. It is time to update.
This last vaccine my arm hurt for 6 days. Painful to touch. I hope that is a reason for the CMV rise. My new system is trying to keep out any and all invaders. Overall, I feel good and if sleep comes at 9pm it is because I am up between 4-5am to get my day started. I thank my 26yr old for this for sure.
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