Day +93, Thursday

Photo of the Day: Mom, me and Designated Survivor.

When Daniele, Erin and Dr. Arnold saw my heavily bandaged ear in clinic today, they all agreed that it looked elf-ish, or perhaps fairly-like. I’m not so sure about that and am still claiming cactus appendage. Mom is sticking with Grogu/Baby Yoda, although she’s interested in tomorrow morning’s big reveal aka bandage removal. And since this is my ear, so am I.

Today marked a second day in a row of an early (ahead of schedule!!) departure, with enough time to gas up my car. Security check points weren’t bad nor was the line at Phlebotomy. My labs were drawn 12 hours 5 minutes after my evening Tacrolimus dose; honestly, that one felt good. (Tacro check is ideally 12 hours after one’s last dose, rendering blood levels most accurate).

Overall my appointment up on OP12 went well. I started by ambitiously climbing 12 flights of stairs – I’m not sure what got into me, except that the thought crossed my mind and before I could make an excuse, up up up I went. All 244 stairs. I was winded, but it felt good – more and more I’m feeling like myself. I spent a few minutes waiting with other NIH patients in the socially distanced waiting room before being called back to a private patient room.

Today’s numbers looked good, indicating slow and steady progress. A few days ago, I stopped taking Letermovir, an anti-viral medication that helps prevent CMV virus reactivation in immunosuppressed persons. This was a planned stop and I was only meant to take this medication for the first 90 or 100 days post-transplant – but it’s been an important medicine in my arsenal. As both my anonymous donor and I had, at one point in our lives, been exposed to CMV, there was a chance post-transplant that it could reactivate in my body (similar to the BK virus). Anyway, Letermovir can affect the dosage of Tacrolimus, but today, my Tacro numbers were exactly where my Team wanted. Monday’s lab draw will hopefully confirm that we’ve got the appropriate Tacro dose for me – it’s been a process, yes, but an important one to be accurate with and one that has my OCD intrigued.

Other lab results were solid, with perhaps the most exciting – my creatinine levels. Today’s was an astonishing .88, which indicates my kidneys are doing well and happy. OK, I’m not sure that they are happy happy – as in we just watched a great movie, were gifted a puppy, or went to an amusement park happy – but the nearly 3L of water that I’m drinking every day is certainly helping. My WBC was in the 4s, Platelets at 150-something, and Hemaglobin dropped slightly to just below 10.

Skin-wise, my face is feeling SO. MUCH. BETTER. The cream that I’m applying for rosacea has taken away the skin-on-fire feeling. Trust me, that is not a good feeling to have. The eczema rash on my shoulders and chest is better with the help of hydrocortisone. However, all of my clinicians agreed that I should apply Triamcinolone, a stronger steroid cream, to the more stubborn eczema spots, and then use hydrocortisone to help maintain clear skin in future, along with plenty of regular moisturizer which will just help my skin’s overall health. And I’m cool with that.

My UTI/BK is improving, which makes me feel as though the Cipro is working. It’s been 36 hours since I last took Pyridium (urethra numbing medication) or narcotic pain medication to manage my discomfort; I’m able to use the bathroom without cringing and my bladder is not having spasms. Life is much much better.

The rest of my time in clinic felt more like hanging out with friends. The four of us chatted about various things – the Philadelphia Museum of Art, traffic hazards in Maryland, museums on the National Mall, camping spots, wearing pink clothes (3 out of the 4 of us were), and a donut shop in Baltimore. It was fun to laugh – there have been serious times (of course – I just had a stem cell transplant) – but not feeling stressed out or worrying about potential complications was just a really nice feeling. Next Monday and Thursday are my final two days visiting the NIH as a Bethesda resident – in the future, I’ll be returning from Asheville. That’s an incredible feeling.

The rest of the day was good. Mom and I made a quick trip to Wegmens to pick up more Miche – yes, I hate half a loaf of bread dipped in olive oil & balsamic for dinner and it was wonderful – and I took a quick nap before a session with my therapist. I say it every week, but working with Karen is one of the best investments that I could make in myself. Later, we watched Designated Survivor, and I enjoyed a new flavor of Kombucha (tart Cherry) and a freshly baked chocolate chip cookie. I’m still powering through my water – but that’s no different from my normal routine at this point.

I’m not really sure what we have going on tomorrow. Aside from removing my ear dressing, there’s not much. It will be the first day this week where I’m not going to the Clinical Center or Walter Reed – I can actually sleep in and not race the clock in the morning. And on an even happier note, it will be my last full Friday in Bethesda, as one week later, Mom and I will drive home. I’m a lot excited about that one. Like a lot. A lot a lot.

With that, me and my elf-ish-Grogu-cacti-like-stitched-up-ear appendage will wish you good night!

Pink! I was one of the 3 in pink today. I’m also smiling – I’m happy. It’s almost time for me to return home.

  1. There is lots to cheer about today: all those good numbers, the bread, and the approach of your last week in Bethesda! I hope you and Zora have a good day today. I’m thinking of you both.


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