September 24, 2020 – Healthy Living Calendar

Woohoo, I won! Donate Life America held a contest called the National Minority Donor Awareness Month Healthy Living Recipe Contest. Lalaine To from Donor Network West referred me to it. I decided, why not? Asian Americans consent to organ donation at a considerably low rate (considered to other ethnicities), and the main reason is a lack of representation. If I can help out any way, I’d gladly do it.

I submitted a picture, my story, and the Heart-Healthy Chow Mein recipe from my cookbook. I guess they liked my recipe and story enough to pick me. I’ll be featured in the 2021 Donate Life “A Year of Healthy Living” Calendar. It’s still under development, but I’m super excited to see it!

11/16/2020 Update:

The calendars came and they’re so cool! I decided to take a few pictures even though I had my skin cream on (but then again when do I take good pictures). I’m excited to try out the other recipes, like the smoked tropical salsa or transplant friendly beef ceviche.

Caption: Growing up, I watched my grandma make chow mein in the kitchen. As an Asian American, food is an integral part of our culture; we communicate over food, bond over food and laugh over food. After my heart transplant, everything around me seemed so unhealthy. Foods were either covered with oil, saturated with salt or included MSG. My Heart Healthy Chow Mein tries to use as little soy sauce and oil as possible, while including more vegetables and protein. Even though it is not traditionally cooked, it still tastes just as good!

October 20, 2020 – 18th Birthday

Guess who can legally vote now? Me! Why? Because I’m 18!

Legally being an adult is crazy. I feel as if I’m getting older but not wiser. However, in the eyes of the law I’m actually 18. Isn’t that crazy?

I think it’s about time that I stop using my age as an accomplishment. I’ve said before that I’m blank years old and have done X, Y Z, but now it’s just petty and irrelevant. I’m still proud of what I’ve done, but age shouldn’t really be a factor.

I’ll also have to stop going to Lucile Packard soon. I have Kaiser insurance, which ends my stay at Lucile Packard abruptly and transitions me to the adult program once I turn 18. The letter they sent me says I have until July, though.

Yesterday I had a mini freak out over turning 18, which did not help with my mom’s rambling about finances. I think that I’ll have time to freak out later, but my parents are still fine with me living in their house and not kicking me out, so that’s a plus.

Was turning 18 as exciting as I though it’d be? No. Am I really okay with getting older? Not really, but I don’t have much of a choice. Would I rather be under 18? No, because I have so much freedom now! Considering all the responsibilities being an adult carries, I feel (at least right now) it’s so much better than being a child. Numero uno makes their own decisions [terms and conditions apply].

Happy Birthday to me 🥳

November 12, 2020 – Transitioning to Kaiser

I thought I had until July, but apparently not. My mom got a call and said that now, now is when the transition happens.

Now that I’m 18, I can’t be going to Lucile Packard anymore. My insurance is from Kaiser, and the only reason I had my heart transplant at Lucile Packard instead of at Kaiser was because they didn’t have a pediatric heart transplant program. It’s really abrupt; my doctors at Lucile Packard say that their patients usually stay with them a few years until they’re in their mid-20s and then transfer to the adult program. For Kaiser, they have their patients transition to the adult program right after they turn 18.

I did have a voice in this, though. I’ve told my parents to not switch insurances. They gave me an option to switch from Kaiser to another provider that would allow me to stay with Lucile Packard and I said no. I just feel that this is something I have to do if I want to become a full-functioning member of society. I can’t really stay a kid forever and in the same way, I can’t keep going to a children’s hospital until my mid-20s. My doctors also told me I’ve matured a lot more than other patients and am ready for the transition. I memorized my medications, I receive my medications, I take care of my health, and I understand the importance of my transplant.

All said, I feel scared. Like I’m becoming an adult now and I’m not ready. I think this is normal for teenagers to feel but I’m going to miss my time at Lucile Packard, as weird as that sounds. Even staying in the hospital and looking outside the window is a memory. I’ll miss my doctors, anesthesiologists, nurses, and caretakers that were so nice to me. I’ve been with these doctors my whole life. I feel as if I’m breaking off from my childhood even if it’s not that big of a deal.

I think this is more than just care providers, this is growing up. I’m in college and whether I transfer this year or the next is also something new. I’m still in shock so I don’t know. I’m pretty sure I have a chance to say goodbye to my doctors but I’m going to send them an email. As for my anesthesiologists, nurses, and other caretakers, thank you so much! I hope you have a wonderful time in the future!

November 19, 2020 – Kaiser Appointment

Today was the first meeting for switching care teams. I arrived at the Santa Clara Kaiser hospital just in time for my appointment.

I was nervous. I think anyone would be nervous in my situation. When switching care teams from which you had a major life event in to another provider, it’s a nerve wrecking situation.

I also think it ties into something bigger than just care teams. I feel as if I’m leaving a part of my childhood behind at Lucile Packard; I had my transplant, stayed for 3 months, and released my cookbook there. Now that I’m growing up, I’ll have to find my own way in life and build my own future.

I met everyone. Lena was amazing. She is so fun to talk to and I’m lucky she’s so kind to me. Lena said she oversaw everything even when I was at Lucile Packard.

Sharlene was also fantastic. Sharlene is my doctor and she was so thorough with labs, check-ups, and my overall well-being. What a strong group of women!

I have to say, I really love how they understand that even though I’m an adult, I’m still a teenager and have to do teenager stuff. I’m responsible for my age, but I still spend countless hours on YouTube and waste my money on boba. I can’t be perfect all the time and I’m glad they acknowledge that.

I’m in good hands. I’ll be a little sad for a while, but I’ll get over it in a month; I can honestly see myself growing up with Kaiser.

December 9, 2020 – It’s Finally Cheap!

My cookbook has been on a JOURNEY. First, people were asking for my cookbook and it wasn’t even available online. Then, I translated the cookbook and released it as a PDF, but everyone wanted a physical copy. After I self-published it, the price was over $30! Not even I, the author, would spend $30 on a cookbook. Now, for the first time ever, a physical copy is at a reasonable price.

I have to say, I’m proud of myself 😁. Today, I found a really great company called The Book Patch. They are AWESOME. They would be willing to print my book on demand for only six dollars! I mean, that is 5 times less than previous estimates. Even better, it’s available for anyone to purchase, not just me!

I was like “screw finals, homework, whatever.” I literally focused all day on translating my 10×8 in cookbook into an 8.5×8.5 in format. It was hard, I gotta tell you. They wanted me to use a software called Adobe InDesign, so I signed up to a $19.99/month student membership that I’m going to cancel ASAP. Not only did I have to get used to a new software, I wanted to finish it today (I was not going to work on it tomorrow, I got stuff to do!), so I rushed it as well.

The quality is not that great. I mean it looks like something a 5th grader would create. However, I’m still proud of myself. It’s $6.38!

I remember panicking when my cover photo that I spent 1 1/2 hours on failed to upload to their website 😂 Turns out they don’t do well on Firefox, so I had to use Microsoft Edge. Phew.

I’m mad that I’m probably gonna have to pay for another month for the Adobe subscription, because I’m most likely going to go back and refine the cookbook. I’m even more mad that I have so much stuff to do and now I’m distracted by the cookbook 🤷‍♂️ Oh well, that’s life. I bet the care team would love to hear about this. I’m meeting them tomorrow (oh, today? huh, it’s that late). I’m so excited! But also sad, again, lol.

The hard part was translating the cookbook in the PDF, I have to admit. I remember in the summer of 2019 staying up really late typing out all those words and arranging those pictures so that we could at least have something. This only took a day, but wow, that was difficult. So things could’ve been worse.

One of my biggest regrets was not publishing the cookbook when the Tasty video was released. There were so many people that were asking for a physical copy, but I was so focused on that other thing. Well, it actually wasn’t a waste of time; it was a valuable learning experience. We can’t be perfect.

Because, The Book Patch is very clearly made for written novels and not picture books, I’m unsure of how it’ll turn out. It obviously won’t be as glossy or laminated as Blurb. I hope they don’t reject it because I use a lot of ink. Oh well, we’ll just have to wait and see. At least I’m doing this for fun, if I was an author trying to make an income out of this, I would be biting my nails (this would be way worse). Thankfully not (at least for right now)!

Again, I’m so proud of you, Justin!! 😍 Buy Now style 1 button

Mother’s Dream

Today, we received text message from Megan – Nolan’s mom. Starting with a sweet picture on Jeff’s phone, so nice Megan shared with us. It brought sweet memories of summer 2018 in RMH where Nolan under treatment. We knew Nolan had some setbacks, Megan updated his status quo. Nolan was in hospital on Christmas morning where they discovered a new brain tumor. They fought to get him back on Larotrectinib and it seems to be working really well for him. All of his symptoms have disappeared and he feels great! It has been such a long and crazy journey. Now Nolan is happy to be doing school at home and he does see a few of his friends at local park. Megan is finally able to work on cleaning out closets and doing projects around the house. For years they were travelling between home and hospitals. It is quite a luxury and feels good to be home and have this time to do these daily routines.

Here is Megan’s words about Mother’s dream

We feel confident that Nolan will get past this, it’s just taking some time. We’re working on it from many angles so hopefully we can one day be free of this whole situation!! Perhaps Nolan will go on to inspire or help others to overcome cancer one day. Who knows. As long as you guys are healthy, happy and doing something that feels meaningful and brings you joy… that’s a Mother’s dream!!!

We are praying that 2021 will make up for 2020… lol

March 1, 2021 – Starting Lisinopril

My new hematology doctor wants me to start lisinopril, a medication to treat high blood pressure. I think it’s something about my ace inhibitors or a level being low. I’ll be taking 5mg lisinopril in the evening and reducing my diltiazem level to 60mg in the morning. Of course, I’m always anxious when starting new meds, but hopefully everything goes well!

Update: Because my blood pressure is low, we don’t need the diltiazem as lisinopril already lowers blood pressure. Also, since diltiazem raises the prograf level, the prograf level will drop when we take off diltiazem.

We’re switching the Envarsus to 3pm, because I can’t do blood draws at 8:45 am Monday and Thursday before class. Monday and Thursday because I can tell Lena on Tuesday and Friday what the results are.

Blood pressures need to be recorded because they’re going to be closely monitored.

  • record blood pressure in the morning and evening
  • blood draws on Monday and Thursday
  • Envarsus take at 3pm
  • Lisinopril replace diltiazem in the morning

It’s a lot.

March 10, 2021 – Internship Announcement

Oh my gosh, I am beyond excited to announce that I’ll be starting a Research Internship at Donor Network West!! As a research intern, I’ll be tagging along the senior scientist for procurement, directly at the other side of organ donation. I know it’s going to be challenging, but I feel it’s also necessary. Sometimes I feel I’m not producing any results, so being able to actually contribute to the process is –> mind blown! I can’t wait to be on the other side of transplantation and bring this with me to my personal understanding of transplantation. I also believe this is my first step into a lifelong career of nonprofits, public health, and organ donation.