Days +177 & +178, Thursday & Friday: 6-month NIH follow-up!

Currently, it’s Saturday morning, and Andy and I are zipping east along the 64, towards Virginia Beach for a quick detour before returning to Asheville tomorrow. And I’ve got 28 minutes to write this post before reaching our friends’ home, so here goes!

I was thankful to return to the NIH for my 6 month post-Stem Cell Transplant check-up. It was a whirlwind two days, packed with appointments, tests, lab draws and even one photo session. Thursday technically arrived while we were still driving to Bethesda; our 2:00 am arrival made for a long day on my part. Thankfully, Andy was able to sleep in while I was at the clinical center. My day started not with labs, but with another COVID test, as my Team had scheduled a Pulmonary Function Test for Friday. The NIH mandates that prior to a PFT, one must have a negative NIH-administered COVID test. Then it was labs and lots of blood drawn; I didn’t even need to request a butterfly needle – I shook my head slightly and thanked the lab tech for their painless draw.

Then I was off to the eye clinic; this was an important appointment for me, as my eyes have been extremely dry, in spite of using Restasis (drops that increase tear production). The Schirmer’s Test – paper strips in the eyes for 5 minutes – resembles something from a horror movie, but is helpful for gathering information. My tear production has actually decreased from where I was at my 3-month tests, down from 6 to 3.

That being said, my doctor did not find much, if any inflammation on the surface of my eyes – an indicator of Graft vs Host Disease. And she noted that my eyes seemed to be lubricated, but the lubrication was not well distributed throughout my eye – so she expressed my Meibomian Glands. These glands, located on the margins of the eyelids, secrete oil, which coat the surface of the eyes and keeps the water component of our tears from drying. In the end, I have a stronger dose of eye drops and I’ve been tasked with expressing my Meibomian glands daily…if this will ultimately help my eyes to feel better, then OK!

After Ophthalmology, I had a virtual session with my social worker, inhaled my monthly dose of Pentamidine (prophylaxis for pneumocystic pneumonia) and had my first vaccine since transplant – Pneumovax, which protects against 23 strains of pneumonia.

My Thursday was finished up with a 45-minute echocardiogram – basically an ultrasound of my heart. I’m happy to say that my heart is doing well and looked good!

Friday morning wasn’t quite as early as Thursday, with my first appointment in Dermatology set for 9:00 am. Andy dropped me off just outside the West Cedar Ave gates at 8:50, and after scanning my NIH badge, I enjoyed a brief walk into the clinical center. It was a beautiful morning and I enjoyed the brightly colored trees, blooming with Spring’s new life.

Dermatology was good, and I’m glad my appointment went well. I’ve been concerned about a few spots on my skin – bellybutton (which I learned is clinically referred to as “umbilicus”), tightness of my facial skin, dandruff on my scalp, and general tightness/dryness on the skin of my upper body (shoulders, chest, back, etc). First – my face: my Asheville dermatologist prescribed a new rosacea medication that the NIH dermatologists approved of and thought would be a good fit….I felt better after they looked at it. Second – the redness of my bellybutton, a small patch of redness on my chest was diagnosed as Dermatitis and I was prescribed a topical cream (steroid combined with barrier cream, think Desitin…think diaper rash cream) to help with inflammation, cracked skin and irritation. As the Nystatin cream & powder were not doing anything for the affected area, the NIH decided that a fungal infection was unlikely. After 2 applications of the new cream, I already feel better. Third, I was given a special shampoo for my scalp – I’ve only used it once, but I don’t notice as much flakiness from my scalp – so that’s a good thing. Finally, the clinician examined my skin – there’s nothing to suggest thickening or scaling associated with Graft vs Host of the skin – I felt so much better.

Then medical photography came in and took pictures of my body. It’s a little awkward – but there you go.

Then it was my appointment with Daniele, Erin and Dr. Arnold! I was so happy to see them all!! And yes, I may have actually jumped up and down with excitement. The big takeaways include:

• No more Tacrolimus!!! I am officially off this medication!!!!
• No more food restrictions!! Berries, sandwiches, SUSHI – here I come!
• No more Valganciclovir; instead, I’m back on Acyclovir
• I can get my COVID vaccine.

I think the COVID vaccine was the biggest surprise…initially I was given a date of June 16, as my earliest possible vaccination day. But the NIH has decided that as long as transplant patients are not on immunosuppressive medications, getting the vaccine is OK. When I gave Andy the news, he whooped and tried to sign me up for Monday the 26 (as it is, I’ll need to wait a few more days, because I just had the pneumonia vaccine). This is HUGE, huge for us both. I nearly cried.

Otherwise, my body is doing OK, and my Team was really happy with my progress. I was given permission to go backpacking in Yosemite this summer (as long as I’m feeling OK), and generally all restrictions were taken away….again, within reason. I’m just so grateful.

Then I got to ace my Pulmonary Function Test, which involved a lot of breathing into tubes, holding my breath, and things that made my lungs slightly uncomfortable. It reminded me of old swimming breath sets from when I raced Ironman, and I’ve always looked at PFTs as a challenging game. Then it was time for my 6-minute walk – this is the face of someone determined to walk fast.

After the PFT, it was a 90 minute Dental appointment – I’m part of a dental study on GVHD of the mouth post-transplant. I’m happy to say that my mouth – tissue, salivary glands, etc – is doing much better, and my teeth are OK. I had two small biopsies of my mouth that the NIH will study and compare to other samples. My mistake was requesting a teeth cleaning – it’s a nice service that the NIH provides; however, my hygienist was just a very aggressive, very hard-core cleaner. She was nice, and I appreciated her, but I’m not sure if I will request a cleaning in the future. She kept saying things like, “push past the blood!” and “when you floss, you’re going to bleed…but sick with it and it will be gone in 10-12 days.” Thankfully, half my mouth was numb from my biopsy site; unfortunately, the taste of blood came through. I only gagged once, and I was pretty proud of myself for that. In the end, all was well.

My final tasks included picking up prescriptions for the next few months, getting my travel voucher and stopping off to say hi to the nurses from the Inpatient Unit, 3NE. By 4:15, Andy had made it through the Cedar Lane checkpoint, and was picking me up at the Clinical Center. We stopped briefly at the hotel, chatted with my folks, and then went out to eat. I had ceviche. It was delicious!

Walking back to the hotel, Andy and I saw this. As a person from Minnesota – this is just wrong. It’s “GreyDuck”.

The night ended with a special treat from Harrison Tweet – I’ve been eyeing fruit tarts for the past 6 months – anything with berries or fruit just sounded WONDERFUL, and with having the nutritional “green light” – this was my dessert of choice. This was my dessert, and then I ate Andy’s as well – he was kind and insisted. We watched a movie – I fell asleep half way through, but it was still wonderful.

And that’s been my time at NIH. I’m way over my 28-minute limit; we’ve pulled over so I can finish this post before meeting up with Frenchie and Elizabeth. I’m grateful to the NIH, to Andy and to my donor – so many people and things had to come together in order for my transplant to occur, and I’m incredibly lucky they did. I’m happy to be officially off Tacrolimus; with this 6-month mark, it feels as though I’ve reached a new milestone. I’m certainly aware of and on the lookout for any signs of GVHD – but I also can’t let myself worry too much about that. It’s still a matter of taking things one day at a time, step by step…reminding myself that this is a marathon journey, and not a sprint.

Alright – that’s all I’ve got! Thanks for reading and have a wonderful weekend!