Highlights
- While I’m still on a lot of medications, I’m off two of my steroids (beclomethasone and budesonide), and we started tapering a third immunosuppressant, tacrolimus.
- I started to have tingling/numbness in my right pointer and middle finger where the median nerve innervates. A mystery to be solved.
- I’m also having more swelling, even though I’ve tapered off some of my steroids. Most of the swelling is in my face, and it’s accompanied by redness and itchiness, and I am also having all around itchiness on my body. It’s been pretty uncomfortable and I’ve emailed my BMT doctor and dermatologist. Another mystery to be solved.
- My friend Amy said I needed to highlight that I’m having normal stools! I know this seems silly to mention and sorry for all my non healthcare workers who might think this is TMI, but it’s not something I’ve experienced in the last several years of my life so when doing #2 is normal and regular, that’s a big win for me!
- Dealing with insurance is so time consuming. I am still fighting with Express Scripts, my pharmacy benefit manager, over a claim from 11/07/24 that still has not been resolved. I am also fighting with Aetna, my health insurance, over therapy claims that I submitted from January until now. They’ve been approved the last several years in 2023 and 2024, but for some reason, all the claims I’ve submitted this year have been denied.
- The prospect of returning to work with accommodations is on my mind but it has proven very difficult to navigate. Prudential, my long term disability company, says to reach out to J&J’s HR team, but the J&J HR team says to reach out to Prudential. Prudential says I won’t be assigned a vocational rehabilitation specialist until my doctor deems that I am ready to go back to work. However, once my doctor says I am ready to go back to work, I lose my disability benefits. I’ve been trying to plan ahead, because even though I am not ready to go back to work today, I know the job finding process can take months. Emails to my HR business partner have all gone unanswered. It’s a loop that no one can answer but I know that I cannot lose benefits, especially my medical benefits, when I am still very much not out of the woods yet. It’s been frustrating but I’m trying to not stress about things that are outside of my control.
- The weather is getting so much nicer now that spring has sprung. The days are much longer and doesn’t get dark until after 8pm. I am trying to do more activity – tennis on Sunday, PT exercises daily, walking daily with Maple, engaging my brain with Spanish classes over zoom, and doing my first in-person low risk activity of sewing!
- Mom and dad both had some health scares this month. Mom went on a vacation to Europe. This is part of Irene’s slow release back to independence (ha). On her third day of her trip in Paris, she slipped in the tub, fell over the ledge of the tub, and fell on the back of her head. She took an ambulance to the hospital. Luckily, no bleed or broken bones but she does have a concussion. Dad, on the other hand, cracked a tooth and it fell out so he’s gearing up for a dental implant soon. A lot of coordination for my parents while these two accidents happened, but all in all, everyone is okay.
The Details
- 4/1 – I did a lot of food prep today while catching up with my friend London over FaceTime. I had a massage in the afternoon, and then went on a walk with Beth in the evening at Hickman Park where you feel like you’re in a forest even though it’s in the city.
- 4/2 – Labs + physical therapy with Kirstin.
- 4/3 – Mom and I are doing some family therapy to work through all the trauma we’ve experienced this last year.
- 4/4 – I went to the Edmonds track with Maple and walked for 45 minutes, did some grocery shopping at 99 Ranch, took an agility class with Maple, and FaceTimed with my friend Jessica in the evening.
- 4/5 – Maple & I went to Richmond Beach. Maple willingly swam which I must credit to Forrest & Neesha. I had dinner with Beth & Travis.
- 4/6 – Forrest/Neesha came over for breakfast before tennis, and then Ayae and I had dinner together at home.
- 4/7 – I spent several hours today following up on medical stuff – Aetna claims, Express Scripts claims, scheduling follow up appointments – while doing laundry. I had Spanish class at night.
- 4/8 – My family and I decided to do a road trip to Glacier National Park in September. It’s something I can actually look forward to since I’ve been pretty isolated for a while so I spent some time planning that trip. I FaceTimed with my NYC parents, Sarah and Ray, and meal prepped in the evening.
- 4/9 – I had labs and an appointment with Dr. Chau and picked up my mom from the airport. I also tried to schedule a dermatology visit as I’ve noticed this last week I’ve had some facial swelling and redness.
- 4/10 – I was able to schedule a dermatology visit but it’s not until July! I’m on a waitlist so hopefully I can get seen sooner. I did also get to taper my tacrolimus down to 2mg BID.
- 4/11 – I caught up with an old coworker and it was so nice to reconnect. I’m hoping that going back to work may happen by the end of the year/early next year. I was also able to decrease posaconazole to 100 mg daily.
- 4/12 – My childhood friend, Amy, came to visit from Orange County. She came over for dinner and it was nice for her to see my mom too since we all haven’t seen each other since pre-pandemic. I started to notice some tingling in my right hand, particularly my pointer and middle finger.
- 4/13 – I played tennis today and rested for the remainder of the day.
- 4/14 – Zoom Spanish class
- 4/15 – I went and did labs, did another family therapy session with my mom, and got a medical massage. I was also able to catch up over the phone with my friend Joscelyn.
- 4/16 – I took my mom to the airport for her 12 day trip to Europe. I followed up on Aetna claims I submitted over a month ago, and I talked to my friend Michele who is a pediatric transplant doctor, and I asked her for some advice on treatment plans and side effects from transplant. There is so much grey when it comes to medicine and if you ask 10 transplanters their thoughts, you’ll get 10 different answers!
- 4/17 – I tried to navigate the process for returning to work today by calling Prudential, AskGS (J&J’s HR line) but was tossed back and forth between the two. I was able to go on a walk with Amy around Greenlake in the afternoon after being on the phone and emailing internal J&J contacts mostly all day trying to get answers.
- 4/18 – I’m a peer support volunteer for the Immune Deficiency Foundation where I connect with other patients who also have a primary immune deficiency. I was recently matched with a new person and was able to chat with her over the phone. I had PT in the afternoon and then had dinner with Beth, Steph, and Kevin at home.
- 4/19 – I took Maple to the beach before her grooming appointment. I stopped by Sherwin Williams while she was at her appointment to pick out some colors for potentially painting my house this summer but it was quite overwhelming.
- 4/20 – I went to tennis today and took Maple on a walk in the afternoon. Usually tennis days wipe me out and that is all I can do for the day. My mom called to tell my brother and me that she had fallen in the tub in Paris. I spent the day emailing my mom’s Kaiser doctors here and requesting appointments, which I’ll follow up on tomorrow.
- 4/21 – I spent the day meal prepping, following up on my own medical tasks and my mom’s. I ended the day with Spanish class.
- 4/22 – I was able to secure appointments for my mom when she gets back next week and all the imaging orders are also in the system. Amy and I had dinner at home tonight.
- 4/23 – I got labs and then saw Dr. Chau after. I also went to play tennis with Christie in the evening but I think playing tennis twice a week is too much for me right now.
- 4/24 – My dad called this morning to tell me that his tooth fell out so I spent all day trying to get him in to see a dentist as his normal dentist was closed. I also started my sewing class tonight – we didn’t get to sewing but I’m looking forward to learning.
- 4/25 – therapy
- 4/26 – Amy and I walked around the Ballard locks and visited the troll.
- 4/27 – I played tennis today and picked up my mom from the airport in the evening.
- 4/28 – I took my mom to get imaging done in the morning, see her PCP, and schedule an optometry visit since she is seeing floaters since her fall. I had Spanish at night.
- 4/29 – I took my dad to a few more appointments today and then had to coordinate care for my dad to see a periodontist and schedule getting the extraction, bone graft, and implant done. I got to take a break and go get a medical massage.
- 4/30 – I had physical therapy with Kirstin and caught up with my graduate school advisor Alice over FaceTime in the afternoon.
Last Thoughts
It’s crazy to think that it’s been 11 months post transplant. Things are starting to feel a little bit more “normal” in the sense that I am no longer sleeping all day everyday. I can take a walk longer than down the block. I can do my activities of daily living like showering, eating and feeding myself, dressing myself. But the more that I think about it, I’m not sure things will ever go back to normal where I’m out and about, making plans, bopping around from one place to the next. I am frequently taking breaks throughout the day, and even so, I am tired. Nevertheless, I’m grateful to have made it this far, and I can’t wait for next month when I start vaccines! One step closer to coming out of my bubble. Woot woot!