Hope everyone is off to a nice weekend. The doc was in this morning and said I was the first patient he saw who was out of bed. That reminds me how lousy folks on the 7th floor of Feldburg can feel at various times during their treatment - and how I have to seize every moment I feel good - to eat, watch law and order, update my blog, 'exercise' (I still feel a little silly pacing my room for exercise but I am hermetically sealed (not really - just unable to leave) my room until my counts come up.
So I tried yesterday to give a picture of the progression of my treatment - when I speak with my medical team they preface most everything with 'every patient is different'. In general I think the progression will look like this
- Transplant done - things can go wrong here with fevers/hives - nothing went wrong with my transplant but I felt kind of yucky and uncomfortable the first couple days due to all the fluid
- Now until early next week (est.) - my blood counts continue to drop which is good and intended as my marrow is getting ready for engraphment of the new stem cells - new immune system and an even greater love of bratwurst
- Early next week plus 10 to 14 days (est) - my counts bottom out and this is when I can feel crummy. I may have fatigue, stomach troubles (she says delicately) and fevers. I will also be at the greatest risk for infection. I will also likely be getting transfusions of red blood which will help with the fatigue.
- About 20 - 30 days from now (est)- my counts recover courtesy of the new stem cells producing red cells, white blood cells and platelets.
- Discharge to apartments (?? when - maybe 30 days - hopefully less)- once my absolute neutrophil count (disease fighting white blood cells) reach a certain number and the doctors are confident I am fit to leave the hospital (I must be eating decently, moving about on my own, etc) I will be discharged to apartments close to Beth Israel allowing for daily outpatient visits to the clinic. The apartment stay can last 2 - 4 weeks.
Personally I am cautious about adding up all this time to get an estimate of when I can come home. In general we think 2 months from my date of admission is a safe bet. If complications arise with graft versus host disease it may take longer. The medications I am taking can also do a number on my kidneys but they are watching this very closely - so far no issues.
Kate and Emma are coming in today - It looks like a decent day so maybe they can get some Aunt - Niece Boston time as well. Jim and Joseph will join them tomorrow and Kate flies home tomorrow night.
Loving that I feel strong right now - very very grateful.
Thanks for checking in
Love
Maureen
Hopefully all of the good news continues.
ReplyDeleteIncredible and fascinating to hear how science works. So glad you're the recipient of so much nerdy noodling that figured out what to do!
ReplyDeleteThank you for sharing all of that information. It really helps those of us "out here" keep track of you and where we hope you'll be, and when! Managerial talents at play! Thinking of you and sending Positive energy. xoxoxo Betsy
ReplyDeleteSo happy to hear you are feeling well and that Emma and Kate are coming in. Thanks so much for explaining the details.
ReplyDeleteGood to continue to hear good news. Are you allowed to have visitors other than family? If there are any kidney problems, I'll make sure Joe gets you a NxStage machine pronto!!! Getting ready to make carrot soufflé. Emma told Samantha it involves LOTS of carrots, butter, and sugar. That's why we all like it so much!!!
ReplyDeleteThanks for the updates!
Amy