Hi @cupofsunshine. Don’t worry about where to respond. You’re good right here… We’ll keep it in the thread for this bone marrow transplant.
Adulting is hard, isn’t it? Hehe. Yes, it’s time to face this medical drama head on and get the transplant behind you. It will offer you the only potential cure for your situation. It’s not a walk on the beach and there will be some really low days ahead for that first month. Usually the first half of that first month. Once the new cells engraft…where they set up housekeeping in your marrow and the white blood count starts climbing, you’ll feel huge improvements physically and mentally. But there is a lengthy recovery time
I’m going to take your questions a they come… first the cannabis use.
That was an absolute no no from my team. You’ll meet with a team pharmacist who will review ALL of the meds you’re taking… prescription and supplements. ANY of these products can affect how the transplant medications work in our body and it’s crucial that they work predictably.
It’s wonderful that you’re feeling well and trying to be in the best shape possible as you head into transplant. It will help with recovery. But also, don’t burn yourself out ahead of time with all the prep work. Do you have anyone who can help you?
However, cleaning your environment is crucial for when you return home.
You’ll be getting educational classes at the clinic for cleanliness, food prep, wearing a mask, avoiding infection.
You’ll be susceptible bacterial, viral and fungal infections and will be taking meds that give you a temporary immune system. Your pharmacist will be having routine meetings with you about those.
No gardening or house plants, no indoor flowers for a while.
I wasn’t able to be around pets for quite some time. So I don’t know where that guy in the video had his BMT but I know my team at Mayo was pretty adamant about avoiding any potential sources of contamination for a while. “When” you can handle pets will be a good question for your team.
Nothing is too extreme for cleaning. New sheets, airing out curtains, washing blankets, tossing pillows and draperies in the dryer. My husband had our carpets cleaned and also had a UV filter installed in the furnace. But others I know bought room air hepa filters well. You want to avoid mold, mildew and fungus.
A new shower curtain is a good idea. I was told not to clean my own toilets for several months…hehe I had no problem letting my husband take over that little chore.
Using common sense is crucial. Sanitize everything with Chlorox wipes.
Food will have to be cooked to at least 160 degrees. No deli meats, nothing from a buffet, no salads initially. All of this will be covered in your classes.
As I mentioned, you’ll be getting tons of info from your team pre-transplant. But I found this online aftercare from Memorial Sloan Kettering which summed it all up nicely.
https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant
Do you have a caregiver who will accompany you for the 100 days + days in Rochester?
To answer you back, yes i have caretakers and back-up caretakers. I had one really really important question for you. But first, I wanted to say how brave you are to have gone thru all that and survive! My question is actually about staying at the transplant house (and food). I eat 10 to 15 times a day. Are all transplants the same as far as the severity of loosing our immune systems? Or are the family of Leukemias (and mpn type) diseases/transplants the most severe? Because I'm not sure I want to stay at the tranplant house. The first reason being that there are too many people and the BMT patients seem to pay the biggest price in loosing immune systems. How am i going to eat that often ( in trying to nurse myself thru those hard days), if I should be staying in my room? If im only allowed to go to the kitchen to eat? It seems like those two things dont go together. please advise. thanks.