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

Thank you for sharing your story

N

Lori,
Your posts have reminded me. My medical team does not really go over this with me. When I go in August, I will ask them what they tell patients. Even they seem fooled by my doing so well. I really appreciate all the details you provided on the air born illness out there. I will wear an N95 outside on my patio. Practicing living in respect and not fear is another mantra. I will guarantee that my November plane trip will involve a mask. I have no intention of opening myself up from this date to any type of GVHD out there. Reminding myself I am a transplant patient is not a joke for sure. Coming back to work full time had me thinking I was back to what is used to be.
Thank you for keeping me on my toes.

Hi Kathy, Just a reminder that people who may be transmitting diseases don’t always look sick. I know you’ve had most of your vaccinations but not sure you’ve had your MMR innoculations yet. Measles is the most contagious communicable disease and can live up to 2 hours in an airspace after an infected person leaves an area.

(https://www.nfid.org/resource/frequently-asked-questions-about-measles/

So while I understand your wanting to test out your new immune system, illnesses and viruses like Measles, Covid, RSV, along with fungal infections can cause a world of hurt or even be fatal with a BMT patient.
We don’t have to live in fear but we do have to live in respect of these diseases.
Another thing to consider, we are always at risk for gvhd. Even though you’ve not had any flares, sometimes an illness can trigger an unexpected gvhd episode because of the degree of inflammation from an illness.

So please, please wear a mask or have your neighbor clean up their own pigeon’s droppings. Psittacosis is a disease caused by bacteria found in bird droppings and usually impacts the lungs. I’m 6 years post BMT and still wear a mask any time I’m working in the garden, pulling weeds, deadheading flowers. But I don’t dig in the dirt or rake lawn/garden debris. That was drilled into me repeatedly to avoid. Just wanted to pass that along. I want you to remain safe. ☺️

Lori,

I will look to wear a mask in my back garden area when sweeping or doing anything with the soil. I did not wear a mask on the plane, as part of me wanted to try my new system. I had a window seat both ways and did not note sick people around me. I did spend most of my time outside and if inside I rarely jammed next to people. I stayed in my own room at night.
This morning the lung released the phlegm as i figured would happen. Oddly, I had few colds the previous decades before cancer, so this think made me feel like my old self. Not a transplant patient. That is what is scary. I need to gently tell myself and write on my wall calendar that i am a transplant patient.
My Follow-up last Friday was good. I had more of my survivorship tests like the urine and a few more extra blood tests. My neutrophils were on the lower side, so my NP felt this 'cold" i was in the middle of might be the reason. I did not have a fever or any other symptoms. Platelets were at 275 and all else was in the norm.
My hair is growing and as i continue to do well, staying on connect reminds me the road i traveled. I cannot forget i had breast cancer, the transplant follow-ups are now moving to every 6 weeks. My next BMB will be my reminder.

Hi, Bonnie. Wanted to check in with you to see where you are on the Transplant calendar. Are all the ducks in a row?

Hi Kat! Somehow I missed this reply…need to catch up.
Congratulations on the first air travel since your transplant! Interesting about the reaction to the AC and tightness in your chest. Glad to hear it turned out to be nothing. You’re masking up in the planes and airport, and when playing in the dirt, right? Nudge, nudge or is that nag, nag. 😉

Actually that is something I should touch on…gardening or doing anything with soil, compost, raking, etc., we BMT patients always need to mask up. While we have a new immune system, it will never be as robust as our factory installed version. We will always be susceptible to fungal, bacterial and viral infections. Under-realized are fungal infections. Over the course of a couple years, three people in my local BMT community, disregarded their advisors in respect to not gardening. Two passed away from lung fungal infections and 3rd has chronic lung gvhd now because of his involvement in working with soil. So it’s really important to wear an N-95 mask any time we’re out working in our gardens, using a leaf blower or sweeping. I even wear one in the house when vacuuming. I have a hepa filter vac but I still don’t take chances.

Sounds like you had a great time at the convention! Vancouver is such a gorgeous area! I’m so happy to see that you’re back to a normal life of travel and working full time again. I know you missed that life for the interim. But now you’re back in the saddle and moving on!
Hah, I laughed out loud at “ A couple too many delicious pastries, so back to better choices now that I am home.” Gurl, we’ve all been there! It’s totally acceptable for us to splurge once in a while! We earned every calorie. 😅

I have missed writing and reading posts. Anitasharma- such wonderful news. I love you were there as the support and that the family is going to be there. I too know take it slow. I felt good, so at times forgot i just had a transplant in the early days. No hair brought me back to life. Keep us posted .
I left last Wednesday for a near week in Vancouver. My 1st flight and trip since my transplant. I did go with a slight tightness feeling in my lungs. It is hard to explain, but the first time i had this feeling was when my friend and i both bought new cars and used our AC's full blast. No fever, but eventually an expectorant was needed to release the phlegm. No fever or any other symptoms, but a cough now and then. My new immune system was hard at work!! I also took their transit system and often had a younger person take the seat next to me who had sniffles!!!
I saw my primary care drs office NP i might have said, and she reminded me I am literally a one-year-old and some months with my new immune system. Cleaning the dirt brought through the bottom of my fence from the 40 plus pigeons that lived next door. Not safe dirt.
Lastly, I bought a refillable bottle that turned out was not cleaned enough. I did not realize it till after a couple days of thinking the Vancouver convention area and hotel water stations water that my funky bottle made the taste funky. I bought a water bottle and refilled it each day. A couple too many delicious pastries, so back to better choices now that i am home.

Good morning, @anitasharma! I couldn’t have started my morning on Connect any better than with this message from you! I’m over the moon with happiness for you, your husband and the whole family with this joyous news of your husband’s cancer journey! All the months of chemo for ALL and then his stem cell transplant are on the other side of that huge mountain! I truly know the sense of relief you’re feeling now after the months of worry.

You have so much amazing news to share! This all feels like a symbolic awakening or renewal period, doesn’t it? With your husband’s positive, steady recovery from the BMT, the Permanent Residency granted, your children returning to the nest and your in-laws able to see their son for the first time in 3 years. I admit, this news made me pretty misty-eyed this morning. It’s an emotional time for your family. And you’re all now a part of my family here in Connect so I get to be emotional too! ☺️

I’m excited for your husband and parents to finally see each other after such a long separation. Face time is great, but doesn’t replace a hug! As a transplant patient myself, remembering meeting loved ones after a long absence, I was so happy but exhausted. Your husband may not want to take naps or breaks from visiting but he needs to listen to his body. So it’s ok for you to nudge him occasionally to take that nap! LOL. I remember feeling so exhilarated and kept visiting, but then I paid for all my over activity with being exhausted for a day or two. I found if I metered out my time it was better in the long run. Also as a reminder, since there’s air travel involved, his parents should be cautioned to wear masks on the planes/airports and also around your husband…to be on the safe side.

It’s been an honor and privilege to be able to help you throughout your husband’s BMT adventure. You never wavered in your faith, strength and devotion to get the best help possible for your husband. No matter how strong we are, from time to time we all need a lifeline. I’m so glad that you reached out to Connect. We’re always here for you.
Please give my best to your husband and have a wonderful time with your family…and a huge hug for you!
Please keep me updated!

Hello Guys
@loribmt and @katgob
I hope you all are enjoying your daily routine as usual .
Well I am here after such a busy schedule as a Caregiver for my husband who has recently done with BMT on Dated April 29,2025.
He was discharged on May 25,2025 and shifted to nearby BMT Apartment .Everything looks like dream as we come a long way .Its Day +57 and he is doing quite well ,eating and drinking almost getting better day by day .no more Vomiting ,nausea and Pain now. Doctors called him 2 days a week for follow-up and further medications change. He is too excited for his parents coming this weekends from India to meet him after 3 years .Another good news is that we have received our Permanent Residency here yesterday only , I thot to share with you all.
He is taking all his medicines very positively as per Doctors Prescriptions . My kids will be moving soon there to see him after their Summer Holidays starting from Tomorrow.
I would like to thanks each one of you for your knowledge encouragements and answers for all my queries so patiently . Have a faith in God and Believing yourself and off course good treatment ,Doctors and family like friends we all will achieve it one day. So never disappoint just Fight for it and you will win .
Thanks so so much !
This is a good platform to express to ask to learn and to share .
I am amazed to have you all over here for each other.
Take care Be Happy and Healthy.