Day -18, Friday

Virtual Pulmonary appointment on OP13 (13th Floor – yes, they do exist). Just waiting for it to begin. 5 hours later, if you took another picture of me, I would have the same look. Ups and downs and back to “normal” tend to do that.

Another up and down day, here at the NIH. I started the day with more half and half in my coffee than appropriate. And then I had another cup. Off to the Clinical Center where I first met with my Pulmonary Team. Once again, I aced my PFT – Pulmonary Function Test – and set some sort of record for the 6-minute walk, with 780 meters. I’m just determined and competitive, what can I say?

The Pulmonologists did note the improvements in my overall lung volume and function, despite the pockets of weird, cloudy inflammation in my lungs (technical term is “ground glass like appearance”) and a few nodules. (And I still have about 2/3 the lung capacity of a non-GATA2 person). I mentioned that I joined a bootcamp/crossfit style gym and had been working out regularly for a year there, in addition to running and backpacking. There was silence. And then Dr. K commented, “well, if there’s any indication that exercise helps, this is clearly it. Keep it up.”

I thanked them. And I need to give a big THANK YOU to my coaches at HEW – Hard Exercise Works. I appreciate all that you guys have done for me over the past year and I look forward to returning post-transplant and setting another PR on my PFT. Thanks HEW!

Then there was dermatology. It was the usual – how is your skin, blah blah. I mentioned my blotchiness (I’m naturally red), basal cell carcinoma on my back (removed in 2017), and they took a look at my feet (I’ve got a case of plantar warts – HPV I call them – which is typical of GATA2 folks. I had surgery to remove them in 2016, but they ALL GREW BACK. I used to blame myself, hate my body. But now that I understand what I have, I just accept it. And wear sandals because the shame I carried absolved with my diagnosis. Funny how that works).

Then came my ear. I showed them a pencil-tip sized spot that has been there for a while, over a year. And suddenly, words like “another cancer spot” and “we may delay your transplant” popped up. And I did my best to hold in my emotion, be stoic – because the last thing I want to do is cry in front of strangers when I’m alone and sitting in a strange office and wearing nothing but a dressing gown and my underwear – but I’ll admit, a few tears popped out. The lovely PA handed me a tissue. I blew my nose carefully, now that we live in a time of COVID.

One biopsy later, I left dermatology not knowing what would happen. It was only an hour later when I heard back from my Transplant Team that they would not cancel a transplant based on that, and the folks at NIH are super conservative with this. I think my heart skipped a beat or fluttered. OK, I get it. Lisa, my research nurse even called my and the first words out of her mouth were, “nothing is wrong – don’t worry!”

I laughed weakly.

Today I’ve got one more heart exam (probably a good thing after the morning stress) and then I’m road tripping back to Asheville. There are kitties and a special someone that I would like to see, and the Season 2 Finale of “The Boys” on Prime. I look forward to spending a weekend at home with loved ones, eating sushi, visiting a brewery…..a brief respite from the Clinical Center before another long week of work-ups. Going into my heart exam, I’m channeling positive energy and maybe one more cup of coffee.

  1. So glad our paths crossed last evening! Eric & I look forward to tracking your progress from Kentucky.
    Keep a check on Chris for us next week!
    Safe travels today, 81 is so long!!!


  2. Say hi to Andy and the kitties. So happy all systems are still go. We love you so much and in spite of the distance we are with you.


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s