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

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@loribmt - in reference to the pet question above and overall survivorship plan question. I am running through my head the life impacts of 1) no BMT - using whatever drugs available to manage life expectancy with Myelofibrosis- side effects, possible new discoveries etc. vs 2) BMT and what life looks like 3 to 30 years out. Can you travel? Have pets, garden, go to concerts or other public events, be near grandchildren that might have measles or other diseases? What ever resources on a survivorship plan please send my way. Thank you!

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Replies to "@loribmt - in reference to the pet question above and overall survivorship plan question. I am..."

@davi0937. Survivorship after a BMT is a huge topic and I plan on posting a new discussion. I’ve been challenged for time lately but it is on my to-do list. In the meantime an excellent informational site is National Bone Marrow Transpant Link. They have plethora of podcasts, informational articles, brochures, etc., on all things BMT.
This should upon in the survivorship section:
https://www.nbmtlink.org/?s=survivorship
To answer your specific questions briefly,
#1 no BMT, treat with meds. That will be a good question to pose to your hemo/oncol. There are tools they can use to help project potential risk levels and that can help with a decision to stay status quo or proceed to BMT. I know it’s a lot to think about.

#2 what life looks like 3-30 years. Well, I’m in year 6 and my life is 99% that of pre-transplant. Just more mindfulness with germs/sun screen/hats…. My husband and I travel, I do some gardening (though I ALWAYS wear a mask if digging in the dirt, planting, raking, etc…I do not take chances! Fungal infections in the lungs are nasty). I’ve not gone to a concert yet, but will if something appeals to me. I attend plays, workshops, meetings, etc., but I wear a mask.
Pets, I discussed above. But at 6 years out, the cat sits on my lap now without my wearing an over shirt. That was just the early months, Children…they are germ bombs! Measles is a huge concern right now and a newly transplanted patient will not receive their MMR for a couple years after. Measles is one of the most contagious viruses and can linger in the air for several hours. So extra caution around children. Your best protection is an N-95 and frequent hand washing.

As I mentioned in a previous post, we didn’t go through all of this to live in isolation. Our doctors and teams want us to live our lives to the fullest. ☺️