Hi there, congratulations on day +46
I was 11 months old two days ago
and my allogenic bmt has been the longest recovery in the history of my doctors' books! After I got discharged from the hospital in January, I visited the hospital 2 times a week, then once a week, then once a month, now every 7 weeks. I received blood products until July, returned back to work in August, discontinued the last tacrolimus in September, I feel absolutely great, but still have that worry. Did it work? Is it coming back? Am I going to die because of a common cold? Am I doing everything possible to avoid infections and I am eating the right things?
Worry is a normal feeling, but you will start living the "new normal" with your daily routine and within the next few months the worry lessens. The milestones yet to come are the great feelings to look forward to. Your port removal, your 100th day, discontinuation of meds, going back to the gym, work, hobbies, they all just feel so awesome, and you feel so proud of how far you have come.
You are so totally on home stretch, the worst is over. There will be steps forward in your recovery, there might be steps back, but with determination and positive attitude you can overcome all the hard times. Do call the doctor for any questions you have, they will be happy you asked, rather than not ask and worry. I always write my questions down and then I write down his answers to remember them later on.
Hang in there, we are here to help and share our experiences. Yet no transplant is alike, but we still share the same feelings of worry, concern and thoughts that you are experiencing. I joined a group at a local cancer community center, I find that very beneficial, although I am the youngest there
but regardless of age or diagnosis, we share the same feelings and it is nice to talk about them.
Tii - 37yrs MDS (11 mo old)