1 Year 5 Months

I’m 1 year and almost 5 months post-transplant.  It’s been night and day the amount of progress I’ve felt in the last 5 months.

June Highlights

• After living with me for the last 1.5 years since November 2023, my mom finally went home! It’s a lot of mixed emotions. I’m so happy to be healthy enough where the idea of independence can even be considered. At the same time, however, there is some sadness with my mom leaving. It’s the comfort of being around family. There are no expectations to entertain. The unspoken tasks of laundry, cleaning, trash, organizing, etc. are inevitably done as if a magic fairy were here because moms do mom things. I’m grateful to have had the support from my family for so long that it’s hard to remember what things were like before when I had to do all the household tasks by myself. It’s been an adjustment re-learning to do all those things myself, and it’s exhausting!
• I’m dealing with the collateral damage from transplant at this point. My thyroid stopped working so I’ll be on thyroid replacement. My adrenal glands stopped working too since I’ve been on steroids for almost 2 years, but it is still unclear if the adrenal glands will be a lifelong issue. Regardless, both issues are going to take some time to figure out.
• I still have quite a few doctors’ appointments this month, including physical therapy, Dr. Kalus (dermatology), Dr. Wisse (endocrinology), Dr. Carpenter (BMT), Dr. Lam (optometry), Dr. Ko (ophthalmology), Dr. Chau (immunology), Dr. Hujoel (GI), and Dr. Humphreys (ENT), massage therapy, talk therapy, and labs. I counted 20 visits this month which feels like a lot, but I am hoping that this part of my life becomes less of my day to day because each appointment usually takes about half of the day.
• I started looking for jobs knowing that the job market is tough right now. I anticipate having to look for 6 months or more, so I feel like starting early is a good approach even if I am not ready to work now. With this many appointments each month, it’s not feasible to work.

July Highlights

• I took a road trip over to Spokane to visit my old pharmacy roommate Alex and to Missoula to visit my old coworker Danielle and her family. This was a great first trip by myself since I could drive there, and Spokane was a perfect stopping point to rest for a few days. My friends were great in accommodating my needs in that we made no plans, so I didn’t feel pressured to have to do anything. It was a lot of hanging out in the living room and catching up. After being gone from home for a week, though, I didn’t feel great when I got home. I had a few episodes of emesis and generally felt run down. I think part of the issue was that I ran out of hydrocortisone during the trip so I may have had a bit of an adrenal crisis. This trip showed me that while I’ve made a lot of progress, I’m still not quite back to normal yet.

• I started volunteering with the Immune Deficiency Foundation as a peer mentor. I’ve been matched with two women who also have common variable immune deficiency diagnoses. They were diagnosed much later in life, so their situation is a little different from mine. It’s so interesting that even though we all have the same disease, it manifests in different ways and while we struggle with a lot of similar things like infections, we also struggle in a lot of different ways. It just shows that there is so much more about the immune system that we don’t know.
• I counted 17 appointments this month with Dr. Kalus (dermatology), massage therapy, Dr. Chau (immunology), physical therapy, Dr. Lam (optometry), therapy, Dr. Carpenter (BMT), and labs.
  • My BMT team met this month, and we’re still worried about GVHD. It’s a little muddied though because I am having thyroid issues and adrenal issues and those symptoms are the same as with GVHD. I’m super pale and I’m very fatigued and finding that I’m sleeping a major part of the day again. Because things seem to be getting worse, I’ll follow up with the team again in October.
• I took a break from applying to jobs this month because of how terrible I have been feeling. Instead, I’ve been catching up with old coworkers when I’m feeling up for a phone call. It’s been nice reconnecting with people and I’m just putting feelers out to keep me in mind for roles that pop up in the future.

• I also helped some friends stage their home for listing on the market. I’m able to do some small tasks that allow me to go at my own pace and schedule. I also had some friends from college visit. What was upsetting was that my friend was sick and didn’t inform me prior. Luckily, they weren’t staying with me, so I was able to excuse myself and go home. I think for some folks they don’t understand the severity of being immunocompromised. Otherwise, since I’m at home a lot these days, I try to do some yard work everyday as part of exercise.

August Highlights

• I went to my 1 year follow up at the NIH with my brother. As part of being a patient at the NIH, you are enrolled on a clinical study, so patients are expected to come back on a yearly basis after transplant for evaluation. It was great to come to the NIH to get a second set of eyes on where my progress is.
  • Testing: labs, EKG, ECHO. My EKG and ECHO were both normal!
  • Ophthalmology: The ophthalmologist was shocked at the therapy that my optometrist at home had given me, namely the Oxervate and the biofilm. She said that I don’t have GVHD, which contradicted what the optometrist at home said.
  • Gynecology: normal and no GVHD!
  • Pulmonary Function Test (PFT): normal and no GVHD!
  • Dental: normal and no GVHD!
  • BMT: they are very happy with my progress.
    • The most exciting part of this visit is that I discontinued my immunosuppressant, tacrolimus.
    • They also increased my levothyroxine to 50 mcg because my TSH level was still high.
    • They gave me more vaccines – IPV, Hepatitis B, Zoster, Hepatitis A, Meningococcal ACWY, Meningococcal B, and HPV!
  • Stim Test: This test was to see if my adrenal glands will produce cortisol on its own when prompted to. Unfortunately, I failed the test. Because I had to hold my dose the day before, I ended up vomiting the day before the test and feeling generally unwell the day of the test. I did take a stress dose (double the normal dose) for the next few days and over the weekend when I got back home from Bethesda but just one day off hydrocortisone really threw me for a loop.
    • Testing: labs, EKG, ECHO. My EKG and ECHO were both normal!
    • Ophthalmology: The ophthalmologist was shocked at the therapy that my optometrist at home had given me, namely the oxervate and the biofilm. She definitely said that I don’t have GVHD, which contradicted what the optometrist at home said.
    • Gynecology: normal and no GVHD!
    • Pulmonary Function Test (PFT): normal and no GVHD!
    • Dental: normal and no GVHD!
    • BMT: they are very happy with my progress.
      • The most exciting part of this visit is that I discontinued my immunosuppressant, tacrolimus.
      • They also increased my levothyroxine to 50 mcg because my TSH level was still high.
      • They gave me more vaccines – IPV, Hepatitis B, Zoster, Hepatitis A, Meningococcal ACWY, Meningococcal B, and HPV!
    • Stim Test: This test was to see if my adrenal glands will produce cortisol on its own when prompted to. Unfortunately, I failed the test. Because I had to hold my dose the day before, I ended up vomiting the day before the test and feeling generally unwell the day of the test. I did take a stress dose (double the normal dose) for the next few days and over the weekend when I got back home from Bethesda but just one day off of hydrocortisone really threw me for a loop.

• For the rest of the month, excluding the NIH visit, I had 10 appointments, physical therapy, massage therapy, Dr. Lam (optometry), Dr. Pollack (OBGYN), Dr. Wisse (endocrinology), Dr. Chau (immunology), therapy, another pulmonary function test, and Dr. Cheng (pulmonology).
• I reached out to the National Marrow Donor Program (NMDP), formerly known as Be the Match, to see if I could chat with someone who also had a BMT for non-cancer reasons. I was matched with a mentor who had a transplant in 2021 when she was 31. Her course was more challenging in that she ended up needing two transplants back-to-back because she lost her first graft after an infection. Her diagnosis was dyskeratosis congenita, a rare genetic disorder. She was also a nurse prior to her transplant, and she worked in a surgery center. After her transplants, she did not go back to patient care and left healthcare completely. She’s not back to working full time but she does have two adopted children, so she works part time for her husband’s company and takes care of the kids. It was great chatting with someone around my age with a similar experience. I think I was encouraged that I’m not “behind” in terms of where I am in the healing process. I did need to remind myself though that she and I are different people and that our circumstances in life are also different. I may not be back at work yet, but I do intend to go back full time when I can. I also attended a virtual NMDP event with the topic of exploring your identity post-transplant. Most of the people on the Zoom were older (50s-70s), but a lot of themes were similar in shifting priorities after a major medical event happens in your life.
• We had our yearly block party on my cul-de-sac which I plan every year. It was nice to be able to be outside without a mask on and around people. One of our neighbors plays in a band and his band plays a private concert for us every year. How lucky we are!

• My friends, AJ and Johnson, came to visit from Tucson and we were able to play a lot of pickleball. I met a new friend, Connie, whom AJ and Johnson introduced me to, and I was even invited to the Seattle Tennis Club to play. The views are stunning!

September

• My mom and brother came up to visit, and we took a trip to Glacier National Park the first week of September. This was the PERFECT time to go because all the kids are back in school. The weather was also perfect – we really lucked out!

• I had 10 appointments this month, ranging from Dr. Miller (OBGYN), Dr. Chau (immunology), therapy, Dr. Dean (oral medicine), dental clean, Dr. Pollack (OBGYN), and another stim test. Unfortunately, I failed the stim test again so I’m not sure if my adrenals will recover ever.
  • Unfortunately I had to stop going to physical therapy and massage therapy because insurance has been a nightmare. For some reason, I have two physical therapy appointments from April that were denied, even though all of my visits from January to March and May through August were all covered. It does not make any sense, and it’s been time consuming and frustrating to do appeals. It’s almost as if they don’t look at the patient as a whole and just deny because they assume the patient won’t take the time to fight for coverage.
  • I also have a GI visit from June and an OBGYn visit from September that were denied. Both of them are due to coding issues, but this requires me to call UW billing as well as Aetna to fix the problem. The onus always falls on the patient.
  • I got my second round of some vaccines – DTaP and Hib!
• I connected with another BMT patient through an old coworker/friend. He’s also a pharmacist, also works in biotech, and has a rare genetic immune disorder. Our experiences were very similar but also very different. He shared that during his transplant; he had 4 difference insurances and that was the hardest part of transplant for him. He did also move home for the year, so he had support from his caregivers. We talked a lot also about returning to work as I shared that I’m having some challenges finding the right role that could accommodate my immune compromised state. He had just finished a year of fellowship when he needed to have his transplant so when he was able to start working again, he worked part time for some medical information agencies. Once a full-time role opened at an old company/team that he was on before, he was able to resume his normal life and move back to the East Coast. I feel like I’m not quite there yet, but I can see the light at the end of the tunnel.
• I finally decided to join a gym and really focus on weight training and tennis. I’m planning to go during the day when there aren’t as many people, and I’ll still plan to mask up when I go. The gym also has indoor tennis courts, so I’m eager to play more tennis as well and build up my endurance cardio-wise.
• I volunteered at the National Marrow Donor Program (NMDP) event where I met several other transplant patients. I also started volunteering at the tool library near my house. It’s become a good community space, and I’ve signed up to learn to repair bikes. They also host a variety of classes, and I took a class on table saw safety. I’m not quite comfortable with one yet but it puts me one step closer!

October Highlights

• I’ve been doing more volunteer work this month. I try to volunteer once a week at the tool library. I also signed up to volunteer with PAWS, the animal rescue. I’ve completed the info session and online modules, but I’m waiting for an in-person training to open in January before I can move forward with being an official volunteer. I also volunteered at the Walk for PI event at Woodland Park Zoo where I met many folks who have a primary immune deficiency. Volunteering has made me feel “productive” in a sense but still giving myself the time to rest when I need to. I also have been watching my neighbor’s dog as they are having construction done at the house. I’m very structured about taking them out for walks as it also helps me with my recovery.
• Doctors
  • I’ve had 10 appointments so far this month – Dr. Ko (ophthalmology), Dr. Wisse (endocrinology), vaccines, Dr. Miller (OBGYN), therapy, Dr. Chau (immunology). While it still takes up a lot of my time, this is half as many appointments as I had in June so progress in the right direction!
    • To help with my dry eyes, I got punctual plugs put in and they have helped tremendously. I’m able to open my eyes in the morning now. Before, it felt like my eyes were sealed shut and it would take me a minute to be able to open my eyes.
    • I got 9 vaccines this month – Hep A, Hep B, Zoster, IPV (polio), Meningococcal ACYW, Meningococcal B, HPV, flu, and COVID. I’m like a 4-month-old newborn now! What is crazy is that after these shots (done over the course of 2 weeks and 3 visits), my arm swelled up an insane amount. My arm was not only itchy, but it was warm to touch. I’ve never had such a reaction before, so I went to see the internal medicine clinic because it was worrisome for cellulitis. I was given a week of antibiotics, and they drew a bunch of labs, including blood cultures, which turned out to be negative. Most likely, this was an inflammatory response, but IS THIS WHAT IT’S LIKE TO HAVE AN IMMUNE SYSTEM??
    • We’re going to continue monitoring thyroid function in 6 weeks and reassess the adrenal issue around the same time. Since things are stable, we’re not going to rock the boat again just yet.
    • I had another GVHD screening with my BMT team, Dr. Carpenter and Kate, and I’m happy to report this was the most uneventful meeting yet.
      • There are a few items we need to keep an eye on as they are slightly abnormal but not alarming. My liver numbers are a little high as well as my eosinophils and on my last PFT there was one number that was elevated so we’ll continue to monitor.
      • We’re continuing forward with my vaccine schedule, but I still can’t get MMR until May 2026.
      • The titers that were drawn a few weeks ago (pneumococcal and diphtheria) all showed that I have immunity, and we’ll do the rest of the titers in April.
      • I can stop valacyclovir at the end of the year since I’ve been vaccinated with Shingrix!
    • I’m still battling insurance – physical therapy, massage therapy claims, UW visits with my GI and OBGYN docs. Unfortunately, I have stopped going to massage therapy and physical therapy, but I think I’m in a better place now.
• I finally did my first event in a crowd which was kind of anxiety inducing but I felt more comfortable given that I’ve started my vaccines. I went to two different comedy shows in downtown Seattle. I wore an N95 mask the whole time, but it was so nice to leave my house and do something normal for once. The first show I went to was Ronny Hates Hasan; Hasan Hates Ronny with Ronny Chieng and Hasan Minaj. I don’t know what I was expecting but it was way funnier than I could have anticipated – not PC in any capacity – but was laughing so hard the whole time. I also got to watch Atsuko Okatsuka which was another great night out.
• I was able to take a girls’ trip to Poulsbo for a night this week. It’s a cute little Norwegian town and the Kitsap Peninsula in general is just idyllic.

I’m almost at the year and a half mark which is crazy – time has gone by so slowly but it’s also gone by so fast. I’m starting to feel more like myself which is nice. I imagine life will still include some chronic illness management, but I’m hopeful that as more time goes by, they will be more manageable. I’m appreciating the calm right now as it hasn’t been like this in a VERY LONG time. I’m looking forward to the holidays with my family. They are all in Taiwan right now. I’m bummed I couldn’t join this year but I’m excited that in just 7 months at my 2-year mark, the world will be my oyster! Until then …