Day +100

Photo of the Day: Day +100 with my Team! Erin, me, Daniele & Dr Arnold. These incredible humans have been absolutely amazing in my post-transplant care. I am forever grateful!! I will miss fun conversations, seeing Dr Arnold’s latest fashion, sharing cat photos and laughing with these three. Until my 6-month check!

My Day +100!! I’m here because of my Anonymous Donor through Be The Match, the National Bone Marrow Donor Program. Please consider joining the Bone Marrow Registry – you could give someone the gift of life! Please click here. It only takes 15 minutes. You could save a life – like mine. Thank you for your consideration!

I woke up happy! And thankful!! I was full of gratitude for this day, and my body on its own unique road to recovery. 100 Days ago I had a Stem Cell Transplant for my GATA2 Deficiency; it was one of the scariest things I have ever done. Every transplant is different, and not all recover. It is a dangerous, major procedure; and in my case, necessary but not yet urgent (as I had yet to develop an aggressive blood cancer), though I struggled with severe infections.

Thankfully, through the Be The Match organization, my Team at NIH was connected to an Anonymous Donor, who happened to be an 8/8 HLA-type match. In turn, he chose to donate life-saving Stem Cells to a complete stranger. I will forever be grateful, and will in turn, work hard to pay this gift forward. Life is precious and I want others to experience support and grace the same way I have. I am lucky that my journey continues, and I vow to use my time well.

I woke up early, excited, drinking creamy tea and writing personalized cards to my Team. That being said, I was still late leaving the apartment. Traffic was heavier than expected, but not that bit of a deal overall. The 10-minute wait for labs was spent finishing a card to my GATA2 Transplant Team, and in the end, I wasn’t late at all.

My final appointment with Daniele and Erin was good; we were later joined by Dr. Arnold. My numbers continued to be solid, either normal or trending towards normal. My Tacrolimus was 5.9, slightly lower than desired, but stable. My next check is Tuesday at my Asheville hematologist’s office; I will send a vial of blood to the NIH and have my results Wednesday. Other numbers – were so uneventful that we didn’t even talk about them. Instead, we joked, laughed and just chatted. Time passed but I just enjoyed the company of my incredible clinicians. COVID has been isolating, so too has a Stem Cell Transplant.

Eventually, though, we bid our farewells. I picked ups 3 months’ worth of medications (the pharmacist giggled while passing bags and medications under the plexiglass window), then stopped to pick up a travel & meal reimbursement from the bursar’s office, and grabbed a final Chai Tea Latte before returning to the apartment. Later, Mom and I both tore through the apartment packing and eventually loaded the trunk of my car. We have a few items in the apartment’s hallway, but with a trip or two in the morning, will make everything fit in the back seat. I hate pasta, toasted with a glass of champagne and have been watching Top Chef. I still feel as though there are a zillion things to do in the morning – but that’s just me.

It’s simple really: whenever we leave, that is OK. There’s no schedule, no expectations, but just to have a safe drive down the 81. I look forward to stopping at Wegmens for a final loaf or three of Miche, and then sharing with Mom the beauty of Appalachian mountains. Likely she’ll fall asleep, I’ll sing loudly and horribly, she’ll continue to sleep and we’ll make multiple restroom stops. According to my Team, my “Aggressive Water Consumption” has helped maintain my Kidney’s health. That’s a trend that I intend to continue, even if it means we stop more often due to my tiny bladder.

And that’s all I can think of for now.

I intend to continue this blog, even after I return home, hopefully for at least the first year after my transplant. I have enjoyed this creative process tremendously, and it has really helped to keep loved ones and friends appraised of my journey. I hope that in future, other Transplant patients and their families may find this resource helpful.

Alright – I’m beat. Tired. And tomorrow is a long (but EXCITING!!) drive! Goodnight and thank you all for your support, kind words and love. I read and appreciate every comment, text, message and phone call, so thank you for that! Here’s to safe travels and moving forward, day by day, on this transplant journey!

  1. It is exciting to see that Day +100 at the top of your post. Your blog has created a detailed and honest account of your journey thus far, and I’m sure it will be helpful and encouraging to others who will take this same path. I am delighted you are at this point and on your way home. Best wishes!

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