Well, here we are. 50 whole days post transplant. 100% donor marrow. Wow. I can honestly say it felt like forever but I made it. After 52 days in Sloan I was discharged the day before Thanksgiving. The transition from isolation to home was much harder than I had anticipated but I finally feel okay. Somehow I contracted "c-diff" after discharge and have been struggling with that but otherwise things are looking good. My counts are maintaining themselves for the most part and while the cytogenetics of my last bone marrow are not completely available yet, my marrow showed that I was completely donor. It doesn't get much better than that.
My stay at the hospital was definitely longer than most transplant patients. I had many set backs and I went into my transplant with a fungal infection in my liver that we needed to watch closely and be very cautious about. Over the next year and a half my immune system will be rebuilding itself from nothing. Right now I am more at risk for infections and viruses than a newborn baby. I am not allowed to go to crowded places and am to steer clear of anyone with any sniffles or anything. Not an easy task coming from the enormous family I have but I will make it. Thanksgiving was a tad different without 30 people crammed into my dining room but we had our turkey and this year we managed NOT to set the oven on fire! :) I am on a special diet for the next year +. An anti-microbial diet. This means I can only eat home cooked meals. No restaurants. Only pizzas we order and cut at home ourselves. No fresh fruits or vegetables besides peel-able fruits. As a foodie, the "no restaurants" (Taco Bell and Five Guys ARE restaurants) will be difficult but perhaps a good lesson for me. Other than that I just have to work on getting the 20+ pills/medications I take daily down and keeping them there. This number will dwindle but wow, it is not easy taking so many drugs at all different times throughout the day.
I seriously could not have done any of this without all of you. My family, friends, boyfriend and total strangers have given me the strength to get to where I am today. Poor Damian spent practically ALL 52 days of my hospital stay on a pleather couch. Had he not been there, I'm not sure I'd feel as well as I do today. I can never repay him for everything. He even had to be my nurse and change the dressing on my gross port, which by the way is still dangling from my chest while I recover and continue home infusions of some medications. Hopefully it will be removed within a few weeks. I spent one day in June without any IV/PICC/Catheter in me. Before that it was April when I didn't have tubing flailing around somewhere on my person. It will be a huge day for me to have this port removed. Also, my mom is a saint. I love you mom.
As for news on fundraising, an incredible friend of my brother and sister-in-law nominated me for the Polar Plunge in Sea Bright, NJ and The Bergen County Ancient Order of Hibernians (AOH Chapter 32) will indeed be plunging for me!!!! This is amazing. The event is January 9th and you can learn more at aohbergen.com. PLEASE if you can make it to Monmouth County for this I would greatly appreciate it. Plus you can see my two brothers take the plunge. Thank you AOH Chapter 32!
So again, thank you, thank you, thank you! I will keep you posted as to what is next!