Day +37, Thursday

Photo of the Day: At some point, it just had to be all of us, on Zoom. Today was that day.

Today was a really solid day, a great day. And in transplant, I feel that great is a big deal to use, just because of all the ups and downs and back and forths and whatnot. Not every day will be like this, but there were a few things that made it extra special.

First, my Dad joined us on Zoom! Learning a new tablet and a new platform of communication is not easy for anyone, and trying to walk someone through the steps of joining said new platform from a thousand miles away is, well, an experience to behold. Thankfully Andy joined in – while FaceTiming with Andy, we were talking to my Dad on Mom’s phone, troubleshooting and going through different steps. It wasn’t that bad actually.

After a long day in the Clinical Center, and after my Better Together support group, sitting against the wall felt comfortable. Andy was a great tag team partner, and I was really impressed with how well Dad did at getting the hang of his new tablet.

And we know the ending – because it’s my photo of the day…it worked!

But the day started what felt early (6:30). I set Alexa the night before, so it was really easy to tell her to snuff it out and reset for a later time. The next go-round I was awake 2 minutes before she went off, so that’s cool. I listened to NPR as I got ready, bid Mom farewell (caregivers can’t accompany patients into the NIH, unless the patient is a minor or in the ICU, I believe), and was rolling through security a tad after 8:30. Today I spent my time in the OutPatient (OP) Clinical Center, floor 12. It started with blood draws, then I met with Daniele and I got down to business.

I’m tired of my Central Line.

I know, I know. I’ve been working on my attitude adjustment and all that stuff. But I really just want it out. She said that based on my blood count results, she would pitch it to the Team, but to not hold my breath. She also said, “Usually when the Central Line comes out, that’s when all the problems start.”

I think I gave her a few grey hairs today

And I know that I’m not out of the woods, not in the least. But my Platelets were an acceptable 95, and the Team was OK with it – as long as I’m good with getting my labs done 2x per week before appointments. Little did they know that I used to drive 20 minutes out of my way, 3X per week to get my Coumadin levels checked……this is something I can do.

I’m choosing to focus on science, on trusting science. And while I have a healthy respect for superstition, I really want to focus on getting to Day +100. That being said – Dr. Hickstein did say that my Transplant was “uncomplicated” and then I had my lower GI turn itself inside out and was delayed in my hospital release by a week…..so there may be something too that. Yeah, ok…I’m slightly superstitious and will knock on wood. At the end of the day, I’m going to need to live my best life (which involves showers and water and not covering my line in plastic guard and tape), and do the things that are best for my and my transplant recovery. I understand this is a HUGE deal, to get my line out – I’m going to continue to do my best, honor my body, and take things one day at a time. It’s really all that I can do. This is not a straight road to recovery, it’s circuitous. If I need to get another line, well, I’ll let my Team make the call. For now, I’m grateful. (And really excited about a total body shower!)

The before, just before the line was pulled. My nurse told me to “bear down”. For some reason I thought of the Chicago Bears. Odd.
And then she applied pressure for 10-15 minutes. And I had to stay laying down for another 45 minutes, under observation.

Other highlights of the day included working with the Social Work department on a survey, listening to jazz in the atrium, eating Mac & Cheese (I know, I know – you’re shocked), and watching not one, but two Netflix Christmas movies with Mom. The Princess Switch, and The Process Switch, Switched Again! (Or basically, part 2). I’m so thankful for today, and looking forward to tomorrow. Hope that wherever you are, all is well!

  1. Of course you’re handling this whole experience with enthusiasm and grace! Like the beast you are! Go girl!

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