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?
Interested in more discussions like this? Go to the Bone Marrow Transplant (BMT) & CAR-T Cell Therapy Support Group.
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I would like to Give an update here for my Husband recovery after BMT Transplant its Day +33 and he is doing better day by day . Still due to more nausea and vomiting not able to eat n drink properly . Every day is challenge someday its diarrhea ,fever tiredness other days he feels fine . So Yes its ups n down going on with his new immune system . These days We regularly visit the Clinic for blood work and then fluids ,sometimes Platelets and Blood infusion ,magnesium which is usually goes down every day.
Overall as @loribmt and @katgob said its a Roller-coaster ride for him .
But we will win one Day that's the Spirit making him go forward and trying his best . Does it usual of so many things happening in the body even after a month of the Transplant ?? Do share it and suggest something which we can try so that at least he can eat n drink properly.
Thank you everyone .
Stay Happy n Healthy always try your Best!!!
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2 ReactionsHi friend !!
Suggestion! Ask a nurse
A doctor in your oncologist
Hematologists office for a recommendation for couple of primaries !! Speak with new doctors office also ask oncologist for referral! It may help getting in yo see new primary good luck
I am amazed and feeling Blessed with all Beautiful Souls around here . While talking to you it gives me immense pleasure and sense of security , How strangers become your friends and family .
Touchwood ! I love this platform which is a simple way to build stronger relationship and spread Positivity.
stay Blessed everyone and have a nice Day !!
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7 ReactionsGood morning, @anitasharma! This update about your husband is making me smile from ear to ear…and exhaling a sigh of relief! With the engraftment of his stem cells he is turning the corner in his recovery and every day will bring some small, incremental healing. Being released early is a very encouraging sign!
As he starts feeling better it’s still important to note that he will be fatigued for some time yet. Recovery will take months and can’t be rushed. His body will tell him to rest and he needs to listen. ☺️
Aw, I’m so happy for all of you that his parents will be able to come! This will be a joyous reunion and like @katgob mentioned in her reply, Family perks us up! Especially when there’s been a long absence and an ocean apart!
Another little word of caution though is that your husband is still very susceptible to infections so anyone visiting should mask up any time they are with him! I was also instructed “no hugging” allowed for the first several months. I’m a hugger so that was tough. I did cheat a couple of times to have “Death-defying” hugs with my daughter…we both N-95 masked, (this was before covid) and I wore a gown over my clothing which was then removed after our lengthy hug. LOL. But shhhhh, you didn’t hear that from me. Giggle.
Anyway, wow. Thank you for this spectacular update and I wish your husband well on his continued recovery and may you all have a lovely reunion with your in-laws. I know they’ll be relieved to see their son after all this time…and on the road to recovery! A huge air-hug coming your way!
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3 ReactionsFamily perks us up. You being there is another wonderful piece of this transplant puzzle. Family/Doctors/Tests/ Nurse of love/blood draws and compassion everywhere.
I made my visit to my primary care doctor to establish a connect now that my active treatment is done. I never looked ahead for the most part with my treatments as I focused on a day at a time. I knew when i got to 1 year, it would be my next Bone Marrow Biopsy. It would also allow me to go some places as I traveled little to anywhere for the 1year suggested. To me it was required. I worked from home for 1 year. I was reminded the next year i am still watched. No measle vaccine till the 2nd year as it is a live vaccine. For vaccines, I remember being told my originals were all wiped out with the transplant. I would be getting new doses. I did not worry and i have pretty much gotten them over this last year with no real issues. A sore arm for some of them only.
So, I wanted to say that at one year, i get survivorship testing. All the tests we got at the start they redo. I do not remember hearing that name. I will say at my primary care with her PA who is fabulous knows all about the terms i gave her. She said with survivorship you are now up to date with all testing needed.
In one month i shall have gotten a blood test with her office that covers thyroid, hdl/ldl and those things. The bone marrow process and oncologists do not do blood tests for those things regularly. They did do them at the 1 year.
I know that i started working remotely at 3months. That helped a bunch to keep busy. No travel time to work, so I established a walking routine that i am able to keep up now working in person.
anitasharma.....Lori told me, and it was true. Each day gets you closer to survivorship. The blood numbers slowly go up and sometimes down. That is why blood donors are so helpful. Just in case you are need them.
I hope your husbands moves to the offsite place and finds rest is easier and quieter. Of course, with giddy and happy family all around, quiet will need to wait.
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8 ReactionsHello lovely People !!
I am so thankful to the God and all of you for your wishes and Blessings . My husband is doing better now , His bp is normal now so as WBC which has increased to 8 on Day+18 .
Slowly his Blood Counts seems to normal .Having tiredness weakness and sore throat but improved Mouth sores and able to have more liquids now. His Platelets are decreasing to 12 today. But Doctors are taking care of it . Hoping this weekend better result .
Infect the good news is that Doctors is discharging him 2 days earlier like May 22.
@loribmt Yes he is going to shift to nearby apartment for at least 2 more months for further appointments and follow-up observations.
Also wanted to share that my In-Laws Visa has come today ,My husband is happy for the same .
I will share more later guys . till now take care and be happy and healthy forever .
take care !
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7 ReactionsGood morning
Hey I appreciate the kindness and Compassion I receive here from all of You . Really Boost up my Strength .
I would like to say thanks to all the people here for sharing such an incredible Experiences and Journey of their Life. It is really helpful and Knowledgeable .
I am gonna update you guys about my husband Health and his Journey soon .
Thanks everyone !
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4 ReactionsI agree with what others have said about how slow the recovery is after the transplant! When my numbers finally started rising, this was such a SLOW process. I think I was hoping that the transplant would bring me back to normal quite quickly, but I spent months in bed, too tired to do anything.
I also kept getting random fevers. One in particular was 3.5 months after my transplant on Thanksgiving day. It was my first real outing to spend the day with my extended family in a city that was 2 hours away. I didn’t do much except sit, eat and enjoy the normalcy of being with the family again, but I was completely exhausted and felt feverish. We got home that night and I checked my temperature. It was 103 F. I didn’t tell my husband about it and I was determined not to spend Thanksgiving night in the hospital. So, I took some Tylenol and went to bed. I was relieved that the fever was gone in the morning. I overdid it the day before.
My advice is for your husband to pace himself, listen to his body and start walking as soon as he is able to.
I am 8.5 years post transplant, work full time at a university, walk 3-4 miles per day and lead a full life. All this progress didn’t happen immediately.
Wishing your husband a good recovery!
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8 ReactionsI remember mine being lower too. They used to update the chart on the wall daily. When a morning nurse forgot, I made sure the next one updated. I was reading some noted i had in my 30 days, and nausea was with me in the 3rd week. The transplant team i hope is keeping you updated on what they are watching. We had 2 main blood draw and checks daily. I was always asked how i felt and i told them.
He is being watched, so let them know always things like nausea, fatigue and things that are dragging you down.
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1 ReactionHi @anitasharma I’m doing very well, thank you! And it sounds like your husband is too. At Day +15 it’s really not uncommon at all for your husband’s neutrophil count to be extremely low. When the newly infused stem cells engraft and start producing blood products, the neutrophil count (and other numbers) will start rising again. Right now they’re settling in and finding ‘a home’ in which to set up housekeeping. ☺️
Once the neutrophils are back in circulation your husband will most likely experience some noticeable improvements with the mouth sores and other symptoms. From there, the recovery should be steady but slow. Personally, my nausea stuck around for several more weeks though it was much less than with the first couple of weeks.
Recovery can’t be rushed. It takes time and patience. And lots of naps!
Also from my experinece my blood pressure was elevated for a time. I was put on a low dose of bp medication and eventually didn’t need to take it any more. Your husband’s BMT team is closely monitoring him and will give him the appropriate meds if they’re concerned. If I may share this, my transplant doctor told me that that it was my job to recover and stay focused on my future. That he and his BMT team would do all the worrying and have the sleepless nights so my husband and I didn’t have to. LOL. I took him at his word! Our BMT teams are very experienced and prepared to handle issues that arise. So try to put leave the worrying to his doctor. ☺️
I learned recently in information from the National Marrow Donor Program ( https://www.nmdp.org/ ) that it’s not unusual for a stem cell donor to have a temporary decrease in platelets after donating. The risks of donating are minimal but it can take days to several weeks for blood numbers to reach the normal level again. He’ll be having followup appointments to check his level. His doctor will be watching to make sure it continues to edge back up.
You’ll be amazed at the difference two weeks after engraftment should make in your husband’s health. The target date of May 24 is realistic. But that doesn’t necessarily mean he’ll be discharged if his numbers aren’t where his doctors would like them to be or if he’s having any symptoms that they’re concerned about. It’s just that, a target date. Once he’s discharged there will be frequent followup appointments. Will you need to stay near the clinic after that for a few weeks?
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