Hi @lmkmom, you asked: “Can you tell me what a day in your post transplant looked like. Meaning after you got home from the hospital.”
Do you mean literally the day after transplant? Or after I returned home from almost 4 months living near the clinic in Rochester?

Once home permanently, life resumes to some level of a “new normal”. I hate that term but that’s what it is. Normal but with new elements tossed such as, life is much slower paced, there are meds, visits weekly (at first) to a local doctor for labs which will be sent to your BMT team. You’ll be a bit weaker and tire easily. So guilt-free naps will be tossed into your day’s schedule. Walking is really important for health and well-being.
Find finding daily routine can be very helpful to good mental health. While what you’ve gone through the past few months is, of course, on your mind it is so important to branch out and fill your days with activities that change your focus from that of ‘confined patient’ to one of having a new life to embrace!

By the time you’re allowed to actually go home, generally you’re feeling more stable with growing stamina. Think of it like recovering from a serious bout with the flu;Tired, malaise, not hungry, etc. You’ll feel tired and there will be changes to your life for a while as you continue to recover. Recovery from an Allogeneic stem cell transplant (using donor cells) takes a while…and it can’t be rushed! Your body will have gone through a great ordeal and recovery goes at its own pace.
Your team will give you exit instructions such food sanitation, things to avoids such as not doing any gardening nor cleaning bathrooms, etc., for a while.
In fact, let me give you the guide I had from Mayo. While it may not be exactly the guide you’ll have it will give you an idea of what I’m talking about. It’s very comprehensive so take your time looking through all aspects from Welcome, Caregiver Support, Transplant Journey

Please scroll down to Allogeneic stem cell transplant:
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/
Arriving home after being gone for months, I’ll admit, was very moving. As soon as we got about 20 miles close to home, I started to cry, blubbering might be a better word! Everything I held in for months came out! Scared to say goodby to my safe haven in Rochester but excited to be home with my family, friends, my ‘stuff’, my bed, to see my flower garden (though I couldn’t even pull a weed). Our friends stopped by that night. The 4 of us sat in our family room while my BFF’s husband pulled up John Denver’s, Back Home Again, on his phone. The 4 of us sang and cried along…it was a very poignant moment and brought home the reality of what happened. I survived and I now was on a new journey with a 2nd chance at life.

If you need the transplant, my advice is to not overthink it. Go ahead, take one day at a time and know that it can offer you a life of hope where you may have had no other option to go forward.

Do you have a target date for transplant?

I wanted to chime in here. My husband had an allogenic stem cell transplant on Aug. 22 2024. I was reading the journal I have kept about our experiences.
We had to live within ten minutes of the hospital for four months after transplant. Some of those days were very hard with the symptoms Lori has described, fatigue, nausea, poor appetite. And some were very frightening with more intense side effects and complications. But we made it and were sent home with frequent follow-ups.
In terms of what a day is like, I can only describe each day as a blessing. We are so aware of how much we love our life together. Just being at home doing puzzles, going for a walk or reading alongside each other fills us both with gratitude.
Now nearly a year after transplant my husband is able to do some of his favorite tasks of home projects and cooking.
We don’t know what the future may bring, his blood counts and metabolic panel is still monitored weekly, but we are pulling together, and so glad to be here.