Transplant Workup Week 1

First off, I can’t believe it’s May. That means that my transplant is really happening soon. It’s been a long road, one with many delays and disappointment. I’m excited because I’ve been waiting so long for this but also dreading it because it’s going to be really awful.

I feel pretty stable for my standards right now. I am still fatigued, and I am not sleeping at night because of steroids (aka doom scrolling until 3 am) so it’s really not a great cycle to be on. Since I’ve stopped the hormone shots after egg retrieval, I’m having some temperature regulation issues. I’m sweating profusely and if ya’ll know me, I’m always cold so this doesn’t really track. Is this what menopause feels like?! But for the most part, things are stable and that’s something to be grateful for relative to what it could be (rewind to norovirus in 2022 with a nasogastric tube, weighing 85 pounds, and not thriving).

This past week and next week are filled with a lot of imaging, labs, tests, and meeting various specialties – all to establish a baseline of where I am at going into the transplant. This is important because during transplant, any changes, even minimal, should be taken seriously.

I started the week with labs – 22 vials full to be exact. It was a lot but luckily, I’m used to getting my blood drawn a few times a week so this wasn’t too bad. I did also start my 24 hour urine collection on Monday which sounds exactly as what that is – putting all your pee in a jug over a 24 hour period. It’s really quite glamorous.

I also got a CT scan of my head and it turns out I have a middle ear infection. I did start experiencing some tinnitus (ringing in the ears) and hearing loss last week. I thought it was just because I got water in my ear when I was showering, but it didn’t go away after a few days, so then I thought maybe it was because I have a lot of earwax and I am known to have hard earwax. Fun fact: Asians have a derived allele in their ABCC11 gene that makes their cerumen (earwax) hard (mine is particularly dry). It’s also the same gene that accounts for why Asian people’s sweat don’t smell like body odor.

Anyways, I digress. How did I get this ear infection? No clue but that’s the general theme of my health … infections pop up without a good reason sometimes. Luckily my ear’s not bothering me much other than when my mom says “hello?? I’m talking to you.”

Another test I got this week was an EKG and ECHO to look at my heart. Lucky for me, up until this point of my life, my heart has been pretty healthy which I’ll take since I don’t get very many normal outcomes usually.

I also got a DEXA scan, a test that measures your bone density. I’m pretty interested to see what the results, albeit a little bit scared. I already know I have many risk factors for low bone density (Asian, female, prolonged use of steroids, age, family history as both my parents have osteoporosis). Bone density usually increases up until 25-30 so it’s all downhill for us after this.

So I am expecting that because of all my risk factors, it will be lower than normal. However, I’ve done as much as I can to prevent the loss (eating healthy, doing weight bearing activities, taking vitamin D and calcium) but I’m not sure if all these things were enough to counteract the hand I’ve been dealt in life. To add injury to insult, unfortunately, I will be losing bone density after chemotherapy because it’s going to blast my ovaries and make them non-functional. Since I won’t be able to naturally produce estrogen and progesterone from my ovaries, I’ll need to be on hormone replacement therapy (HRT) up until menopause. Hopefully this will help slow the progression of bone density loss.

I rounded out the week with a pulmonary function test (PFT) and 6-minute walk test. Based on my last test in March, it looked pretty good and the pulmonologist was even surprised that some of my bronchiectasis (lung scarring) from prior upper respiratory infections had reversed (usually not reversible in adults). They can’t explain it, but I’m not complaining so we’ll take it. I’m still waiting for the full report but it seems like during the 6-minute walk test, I desaturated to 88% and my BP spiked to 155/89. We’re not sure if the pulse oximeter was not working correctly but I had two on and they were both tracking similarly. My BP has also been really high recently, possibly due to one of my medications (tacrolimus) but I’ve been on it for the last 6 months and it’s only recently that my blood pressure has gone really high. Nevertheless, I’m feeling “fine” enough but everything is always “fine” until it’s not. We’ll just watch and wait but I have the number for what to do in case I start to feel terrible this weekend. Hoping for a calm and uneventful weekend.

In terms of consults, I met with nutrition, infectious disease, social work, and dermatology this week.

I’ll be receiving a whole nutrition booklet of things I can and cannot eat. I already know the hardest part for me is going to be the restrictions on fruit (blueberries, strawberries, raspberries, blackberries) because it’s too hard to clean. I also can’t eat leftover rice or pasta because you can get something called Bacillus cereus from it and it’s not a bacteria that can be killed when you reheat in the microwave. SO MANY RULES, but I might also not have an appetite so we’ll see.

Infectious disease was a bit overwhelming. I knew I’d have to be on prophylactic medications to prevent from getting infections, but it feels like so much. One of the challenges with CVID is that many of the lab tests used to detect if you’ve been exposed to something is to do an antibody test. If you have the antibody it means you’ve been exposed to it. However, since I don’t make antibodies, and I get antibodies from thousands of pooled blood donors, it muddies the waters and it’s a little hard to know what I have and have not actually been exposed to. Because of that, infectious disease has to take precautions in this case to assume that if an antibody test is positive, to treat it as such. So here were ALL the recommendations.

– Continue posaconazole for anti-fungal prophylaxis
– Recommend initiation of ceftazidime in the setting of neutropenic fever
– Continue valacyclovir for HSV/VZV prophylaxis
– Patient is CMV IgG positive and will require letermovir on day +5
– Continue daptomycin for Pjp prophylaxis
– Possible Strongyloides exposure: treat empirically with ivermectin 200 mcg/kg/day PO x1 dose
– Continue prophylaxis with entecavir

Dermatology was also pretty quick and standard. I have all the manifestations of autoimmune inflammation – eczema, vitiligo, psoriasis. I think that’s going to be really interesting is if I’ll still have eczema because Gordon also has eczema. One thing that I didn’t inherit from my parents was seasonal allergies, but Gordon has terrible seasonal allergies from my dad. Another interesting question of whether or not I’ll get seasonal allergies after this … Unfortunately, I don’t think my vitiligo will ever go away so I’ll have these random patches of white all over my body forever, but it is what it is. Hopefully I won’t have to see dermatology much during the transplant, but I’d imagine they’ll probably step in (along with dental) when I get mucositis (blisters in my mouth) from the chemotherapy.

We ended today on Gordon’s 38 birthday! We decided to celebrate by going to a ceramic painting studio – my last outing before being confined to the hospital. Luckily, we were the only people there so it felt very comfortable to do this. Thanks to Andrea for planning the outing!

My mom cooked a really lovely dinner for us after back at the lodge. I think when I’m discharged and at the apartment not able to go out, I’m going to make my mom write down all the recipes for the food that she makes. I mean I probably won’t get actual measurements because I don’t think I’ve ever seen my mom use a measuring cup (iykyk Chinese cooking) but at least I’ll know what ingredients to use and hope that mine will turn out at least 70% as tasty as what my mom can make.

While this is a really challenging time for us as a family, the silver lining is all the family time we’re spending together and that’s been pretty awesome.