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

I 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!

Good 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 !

Hello 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 !

Family 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.

Good 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!

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 !!

Hi 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 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!!!

Hi @anitasharma. This is a really positive update about your husband. Day +33…1/3 of the way through the first critical 100 days! The slow, steady improvements are right on track, at least from my experience. There were days when I felt I was making huge progress and then surprised by a set-back for a day or so.

Just for fun, I looked back on my journal entries. Day +37…close enough to your husband’s Day +33. Here is a little excerpt:
“Feeling better today after a setback yesterday. Gaining strength and except for the daily bouts of nausea which come on like ‘morning sickness’ I’m really progressing fairly well.” So it sounds very much like your husband!

Not everyone experiences the same prolonged nausea. I don’t think @katgob was bothered by that very much if I remember correctly. Hopefully she pops into the conversation to share her story.
I’m wondering if the prolonged months of chemo for our leukemia, that both your husband and I had before our transplants, had something to do with the more noteworthy gut issues during transplant recovery? Anyway, I was nauseated then and also for at least 2 + months after transplant.

Eating can be challenging. My husband used to make up containers of small portions of food. I mean bite sized bits of sandwiches such as peanut butter/jellygrilled, little pieces of grilled chicken breast, cheese and crackers, little bites of leftovers, pudding, lactose free ice cream, or rice pudding, that type of thing. I couldn’t face an entire plate of food. So I’d grab little portions of what appealed to me at the time. Protein is important. Also, bland foods would be easier to digest.
As for water, I found that if I drank room temperature water, it went down much easier than if it was iced. I could only take small sips of ice water because it bothered my mouth, throat and stomach. Lukewarm water didn’t cause any issues.

What does his doctor say about the progress he’s been making? To me it sounds like he’s right on course. ☺️

Hi all. My nausea only hit me in the 2nd and3rd week in the hospital. Started a bit after the Cytoxan infusion. I have written that throwing up was something i avoided for decades. When each day i was nauseous more and more they gave me more of the fun circular throw up bags every day which were great. None of the meds stopped it. I was unable to eat or drink for a couple days. Finally, the nurses' notes and the morning rounds with the doctor with me throwing up while with them, i got the emend medication. As i read it now, it is supposed to be before. It blocks chemicals in the brain that can cause nausea. I know it worked to stop mine.
Day 37 I was at my caregiver's house. Just a bit tired. For sure having MDS helped me, so I was in better shape going in. I know anitasharma it will get better a day at a time. Lori always said sometimes it is 2 steps forward and a couple steps back. But for sure the transplant team is right there the first 100 days and beyond. Success for us is success for them.