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

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!

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.

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 !

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 !

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!

I 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.

Hi @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?

Hey @loribmt
Hope you are doing ok.
Let me Inform you My Husbands Transplant has done quite well . Its Day+15 and as expected he is going through few of the side effects like mouth sores, Vomiting , Tiredness and fever Sometimes.
I would like to ask you is it ok Like His WBC counts is quite slow just 0.1 ????
As I am away from him going back to hospital this weekend . Also his Blood Pressure shoot up to 177 last night which is quite high but I am really worried what could be the reason ???
Doctors has given May 24 as his discharged Date ,I hope He will be fine till the time .
Please also let me know How the WBC Growth Increase after the Transplant.
My Son (as Donor) is also doing quite well its just that his Platelet was just 139 Last week .Is there anything to be Worry for him ????
So many questions comes up in the mind Literally .
Good day Guys!! Stay Blessed always and Happy Healthy forever.
Loads of love !

Hi @skibum486. This will be a great discussion for your upcoming adventure into the land of BMT. You’ll be able to join fellow Chimeras (those of us with 2 sets of DNA) who have weathered the trail and will welcome you with encouragement, inspiration and honesty. This isn’t always an easy journey but definitely one worth taking for a 2nd chance at life.

I have to ask about your @name…ski bum! Downhill or X-country?

Lori,

I LOVE your post. My work has kept me so busy unpacking and sorting I am tired when i get home. I forget i am using my laptop at work still and i could post if i remembered.
I do need to check on my fellow, as my NP says you can try again after 1 year. I love that you named your Robbie. My NP had some be a match donors may have only donated to get something free or be allowed to attend an event. BUT, our donors took the call to give their cells. That makes them special. It is possible they could eat junk, but equally possible they could be healthy and fit. We had 2 donors at our reunion; one was a 20 plus yr European and his fifty something recipient. I forgot the other as we did not see their honoring, I will need to see the social media post like all others. I did get myself near the front of the group shot, quiet possibly being elbowed out by the 1 yr toddler next to me who insisted as a director he would have had this group shot done a long time ago. He did pose and focus on the camera.
The fellow i met when i arrived to register listened to my story and i listened to his, or what he would share. He asked me how i know so much about the tranplancet process and i said Mayo Cluinic and other AML/MDS patients. He then told me he was a pastor, and he felt God had brought him here to be there for his people. He would understand being a transplant patient himself. I met the other lady i approached as she was wearing a hat like me. She has AML and 1 year ago had a transplant from her sister, but it returned. She is back to continue treatment with hope and possibilities.
Lori i have also not had a cold for a year. Not that i had many, but geez Louise I am fighting off those students' germs in the office like crazy. Three out of the seven regulars have baby kids. Germ carries!!!
This transplant got me out walking and drinking my water. I slacked one day and i felt sluggish. Half my body weight which makes it 82 ounces.
What a life and a 2nd chance to do some things different.