The Slump (Days 60-80)

The hardest part about this transplant journey is how long the recovery process is. In my brain, I rationally know that there are milestones – day 100, 6 months, 1 year, 2 year – but I’m honestly totally over it. I’d like to fast forward to a year from now where I might feel a semblance of normal, whatever that means. The days are long now, and it seems like everyday there is something new that pops up that makes me slightly uncomfortable and reminds me of where I am. But good thing for the Olympics because that has given me something to do for the last few weeks, to keep my mind off of everything transplant related.

BMT Clinic Follow Up (7/29) – Day 61

Day 61 started with getting my blood drawn at clinic from my central line. Around this 2 month mark, there is often a slump in the numbers, and as predicted, mine have slumped. The protocol that I’m on does a 60 day workup which basically means A LOT of labs, over 20+ vials of labs. At this time period, we also do another chimerism study like we did at day 30. The chimerism study looks at how many of the cells in my body are from Gordon and how many are from me. The most ideal situation is when 100% of the cells are from Gordon. The study takes about a week to get back, so I won’t find out until next week what that looks like.

Also, because my baby immune system is still developing, I’m still not able to make T cells and B cells on my own, which means I haven’t started making my own antibodies yet. As such, I still have to get IVIG (intravenous immunoglobulin), which is made up of immunoglobulins from thousands of donors. I’m on a very large dose of IVIG right now, mainly because this dose is what has kept me healthy prior to transplant so it ends up taking the whole day. I didn’t finish my IVIG infusion until 7PM, and the team decided today also that I could take my central line out and go to once a week clinic visits instead of twice a week!

Taking out the central line is slightly uncomfortable but not painful. It feels like an IV line being pulled, but slightly more uncomfortable because it’s in your neck. There weren’t any major issues taking it out, but I can’t shower or get it wet for the next 24 hours.

A new symptom that I’m starting to experience is blurry vision. I haven’t been very diligent about doing my eye drops though so we decided that I would spend the week being compliant about eye drops 3-4 times a day and see if it would resolve.

The best news so far in this process is that the NIH BMT team has asked that I make arrangements to connect with the BMT team at UW/Fred Hutch. I spent the rest of the week making doctor appointments – BMT, immunology, OBGYN, dentistry, PCP, dermatology, pulmonology, infectious disease, ENT, gastroenterology – all to say that I have a VERY busy September schedule. 

I have secured an appointment with the UW/Fred Hutch BMT team for August 29th, which is a little bit earlier than my Day 100, but given scheduling challenges, we settled on this earlier date and the NIH BMT team is comfortable with me going home a week earlier.

I also spent the week dealing with work challenges, calling J&J benefits center to better understand what benefits I still have now that I’m on long term disability, cancelling my Verizon business account, trying to figure out how to pay off my corporate card without having access to anything anymore.  Overall, a frustrating experience to be on hold for an hour and a half, only to have almost none of your questions answered and no instructions from anyone. I did email the HRBP, but have not gotten a response so TBD if there’s more clarity later.

Knowing that I’ll be coming home in about a month, getting the house ready is the next step. Unfortunately for me, prior to coming out to the NIH, we found two dead rats in the attic so wit the help of friends and neighbors, I was coordinating getting bids for doing an attic/crawl space clean and sealing up any spots in the house that might be allowing rodents to come in. Thanks Beth, Ayae, Anthony, Cameron for all your help with this coordination. Home ownership – fun stuff.

Gordon’s Departures (8/3)

Gordon also flew home at the end of the week (8/3) and it was a bitter sweet moment. He’s helped so much in the last four months – being my advocate, adding in his own thoughts as a clinician, cleaning the hospital room and wiping down all the surfaces, changing my sheets everyday at the hospital, pushing me to go on walks everyday – I am eternally grateful for his support during this time. I know he has some anxiety with leaving because I’m stable in some ways but also very unstable in other ways. It’s still so early after transplant (even though it feels like it’s been forever), but in the grand scheme of transplant, it is still quite early and things can still change quickly. 

BMT Clinic Follow Up (8/5) – Day 68

Since I don’t have my central line anymore, I had to go to phlebotomy this morning. I’m a hard stick so unfortunately, I ended up getting poked twice since she missed the first time. I saw Erin and Dr. Arnold after the labs came back and my white counts went down even more. They weren’t worried and said it was all part of the 2 month slump that they often see.

I did get to discontinue the urosodiol now that my liver panel was normal – they’re still not sure what caused my LFTs to go up for a short period of time, but they’ve resolved now. I’m also starting to wean the prednisone steroid that I’m on so I’ll go down to prednisone 7.5 mg on Friday (8/9).

My chimerism results from last week came back and the myeloid line is still 100% Gordon which is great news. My lymphoid line was too low to count, so I’m still dependent on IVIG to help protect me from infections until my body is able to make them on its own (fingers crossed). 

Ophthalmology (8/6)

Because my blurry vision hadn’t resolved, I was scheduled to see the ophthalmologist on Tuesday (8/6). It was generally unhelpful – I still have dry eyes so I’ll continue to use refresh tears. I have a stye on my eye that I’ll use a warm compress for and should resolve, and my meibomian glands (oil glands) are a little bit clogged which the warm compress should also help. They didn’t really have an explanation for the blurry vision – I actually tested 20/20 in both eyes but we’ll continue to watch and wait to see if it resolves. 

OBGYN (8/8)

I had a follow up appointment with OBGYN since I am in menopause now. Since I’m still have some hot flashes (although not as bad as before I started hormone replacement therapy), they did increase my dose from 1 mg to 1.5 mg. I will also need a colposcopy at some point, but I declined it today since I am at an increased risk of infection right now. I can wait until I get back to Seattle to see my regular OBGYN. 

BMT Clinic Follow Up (8/12) – Day 75

I only had to have one poke today for my blood draw. Unfortunately after leaving phlebotomy, I ran to find a bathroom because I vomited up my entire breakfast. I saw Erin afterwards, and my blood counts are about the same – seems like I’m still in this “slump” period but hopefully things will continue to get better. 

Some things I’m still struggling with:

• Nausea/vomiting – I still have persistent nausea. While I don’t vomit everyday, I do still retch often, particularly when I’m brushing my teeth. I want to get to a point where I can find joy in eating again, but right now, it’s a chore. Every meal takes at least an hour to eat. I stare at my food, pick at my food, slowly put a scoop into my mouth where it sits in my cheeks for several minutes. 
• Beau’s lines on nails – This doesn’t bother me in any way, it’s more just a cosmetic thing. Beau’s lines are caused by temporary disruption of nail growth, often times caused by chemotherapy. It should resolve in a few months when my nails grow out, but it does look like my nails are brittle.
• Vision changes – My blurry vision from last week hasn’t resolved yet, but it also hasn’t gotten worse. I have a stye on my eye right now and my eyes are a little bit itchy so I’ll continue warm compresses to see how it goes.
• Demodex folliculitis on my face – my eyes and face are starting to get these white head looking things again, and my eyes are especially itchy and a little bit swollen. Folks with competent immune systems are able to keep the mites on their faces in check, but since I’m immune compromised right now, the mites may overpopulate again, causing this rash on my face. I got this back in June when I was initially transplanted. I’ll plan to restart metronidazole cream and they did give me another dose of ivermectin but I’ll plan to see dermatology next week if things don’t resolve. 

Some positives about this week:

• PEG removal – I got my feeding tube removed after having it for 8 months! I’ll have an extra belly button looking scar on my abdomen as a reminder, but I no longer have any random tubes sticking out of me. That’s a big milestone to celebrate!
• Steroid taper – After being on prednisone since December 2023, I’ve tapered down to hydrocortisone 10mg twice a day, which is very close to what one produces physiologically on your own. Since it’s been a long time since my adrenal glands have had to produce cortisol on its own, I’ll have to be on this for a few months and then go through something called an ACTH stimulation test. ACTH is a hormone that your pituitary gland releases and it is supposed to trigger your adrenal glands to produce cortisol. Since I’ve been on steroids for a while, my adrenal glands might be a little sleepy at this time but hopefully since we’ve been slow to taper down the dose of steroids, my adrenal glands can wake up slowly on its own. TBD because ya’ll know I don’t like to fail any tests.

Overall, I am so excited to get home soon and sleep in my own bed. I’m also excited to catch the last few weeks of summer in Seattle!