Today was my last full day in Bethesda without any appointments or clinic visits. I enjoyed sipping creamy tea and watching snow fall in the early morning hours. Later, chatting with my folks (Mom here, Dad over the phone), and then following up on a few medical appointments in Asheville. I’m grateful for my NIH Team’s help in prepping my Asheville-based hematology clinic with my post +100 Day, post-transplant care. I am thankful for the willingness to collaborate – it means a lot, especially as they weren’t the ones who originally discovered my GATA2.
In 2018, my hematologist at Johns Hopkins ordered a genetic test that revealed my GATA2 Deficiency (she was testing for cancer, I later found); additionally, I had been working with a Team from Midwest Immunology who suspected MonoMAC Syndrome, which is essentially a sub-disorder of GATA2. At present, MonoMAC is referred to as GATA2; my Midwest Immunology Team recommended that I contact the NIH. Dr Chaturvedi called with my results, apologized for the bad news, and assured me that my results would be faxed to Dr. Holland’s Team at NIH. Everyone was apologetic, and while I understand their position, I was just ecstatic to have a diagnosis.
At 37, I had spent most of my life struggling with poor health, random infections and a body that constantly threw me for a loop. There were times when I was healthy – I raced Ironman, rowed for the National Team, worked 50 hours a week, completed epic hiking challenges – and there were other times when suddenly my body just stopped unexpectedly – sudden pneumonias, bone marrow failure, infections and viruses that took over, weird things that just didn’t make sense. I struggled physically. And I struggled with the not knowing of what was wrong. In that regard, having a name of what was affecting my body was, in essence, a gift.
With a name, we could figure out how to fight it.
And I also made some significant personal changes, leaving an unhappy marriage and taking a step back to consider what I really wanted to do with my life. I met a wonderful person whose values of compassion, family, faithfulness, love and kindness matched my own and took a chance, moving to Western North Carolina. And though my Stem Cell Transplant was pushed back a few times (due to donor availability and then COVID), ultimately, it happened.
And here I am – excited and ready to start this new part of my journey. Excited and ready to go home, return to Andy (and kitties), and move forward in my post-transplant life. I start my graduate program at Western Carolina Fall semester 2021.
Anyway – later in the day, Mom and I headed out to the C&O Canal Towpath, parking at Carderock and walking north along the snow-packed path. We saw just as many skiers as we did walkers and enjoyed the river views and two herons. After returning home, we watched Top Chef (Colorado) and I chatted with Andy. Tomorrow I’ve got a Dermatology appointment at Walter Reed, for my stitches’ removal. I may need to thank Dr. Smith for my elf ear, but I also don’t want to insult him, so we’ll see.
Here’s to one more day down, and less than 65 hours until walking through my front door!