January 22, 2023

January 22, 2023January 22, 2023 ~ Campjustin ~ Leave a comment

Wow… I didn’t think I’d be back here. In all honesty, I never planned on going back to myhearttransplantjournal.com. I created this blog when I was 15 to make sense of the world around me. I was confused… and scared.

I wish I could say that I’m returning on better terms. Sadly, I’m not. I’ve recently had some health scares and I’m scared. I don’t know what’s going on but I hope that it’s nothing.

I want to say that I’m sorry for not updating my journal but I’m not sorry. Also, I’m like the only one who actually reads this journal lol. So I apologize to future Justin for being crass but I’m not sorry because I was out living my beautiful, wonderful life that my new heart allowed me and my heart transplant slowly and surely lightened its grasp on me. I’m not saying I didn’t prioritize my health; of course I prioritized it. But I made room in my heart (hahahaha) for me. I moved to New York, I dated (I f*cked), I did school, and I made some new mistakes, fell down, and got back up again.

However, these health challenges in these past two weeks have reawakened the fear that I’ve carried with me since I was 15. I’m scared for the worst. I don’t even want to say it because I don’t want to say it. I don’t want to speak it. But I don’t want to think about it… and it’s there.

And I don’t know if I have the strength. I know it sounds really bad, but I don’t know if I’m strong enough to go through another heart transplant again, if it came down to it. Because, what if it doesn’t work? What if I gave up my life for nothing? What if I can’t deal with the pain? What if…

I know I’m not supposed to be thinking these thoughts. I’m not supposed to speak them into my life. I have to take these thoughts and bury them deep into my mind, but I’m not able to. I was never good at burying my feelings. I literally have a blog about my feelings.

These fears can feel intoxicating. They can feel like a blanket that buries you under the covers and every time you gasp for air it pulls you down again. There’s no hope and no way out.

Because there’s no way I’m going to end with a dark note: if I know anything, I know that the sun rises every day. I have so much support, from my friends to my family. I know that I can’t do this alone and I’m so lucky I don’t have to do this alone. I will count on the love I have my friends and family to lean on in case life gets too heavy and I can’t stand on my own. I have so much and am so grateful for everything I have.

March 7, 2023 – Visting Isa

March 7, 2023March 19, 2023 ~ Campjustin ~ 1 Comment

Today my mom and I visited Isa. I have wanted to visit Isa for the longest time EVER! Isa is my model and inspiration. I recently read her book “The Power of Two: A Twin Triumph over Cystic Fibrosis” and it couldn’t have come at a better time. I love Isa because she was born in 1972, 17 years before the gene mutation that causes cystic fibrosis was discovered. At the time her and Ana’s life expectancy was 10 years and Isa is now 52. If Isa can live until 52 when she was expected to live until 10, then I can also live a long life.

What inspires me so much about Isa and Ana’s story is that they not only survived with CF, they also thrived. I couldn’t have picked up this book at a better time because the same questions the book asks I’ve also been circulating in my head. How long do I have? Will this be forever? How do I deal with pain? Am I strong enough?

The strength that Isa and Ana have amazes me. I hope that I can have their wisdom and strength one day. I made Isa paper cranes because Isa currently has cancer. Cancer killed Ana in 2013 and I can’t imagine how Isa is feeling. I watched the TED talk Isa gave after Ana died and she said losing Ana was “the toughest battle of her life.” I was a little nervous to ask, but I did. I asked how Isa got through it and she said her husband Andrew, her friends, and art.

March 13, 2023 – Visiting Barbara

March 13, 2023March 19, 2023 ~ Campjustin ~ Leave a comment

Today I visited Barbara Costerus with Miranda. Barbara is a kidney transplant recipient for 22 years and she is currently on hospice. She is amazing – she was on hospice for a year already and she is still here. Her hospice contract was renewed for another 2 months.

Barbara looked better than I expected. I met her and her husband Bart for the first time and what a horrible way to meet. However, anyone who has had a transplant for that long and survived is an inspiration. I told Barbara thank you for the inspiration she gives us.

Barbara told us about her life. She has two sons and both of them also had lupus. Her older son just passed away last year at 57 waiting for a kidney transplant. Barbara said it was hard, is hard. My mom says that grief manifests itself in physical ways. She thinks Isa has cancer because of the grief after her twin sister Ana passed away. Maybe that’s why Barbara is in hospice, because she can’t handle the pain of living after her son passed away. However, Barbara seems to be very determined to keep on living. She is frustrated that she can’t talk or contact her nephrologists or transplant doctors for advice. I mean, she was on hospice for a year and she’s still alive. However, her other son is doing well because he had a kidney transplant also around a year ago. That news delighted me so much.

After I visited Barbara I fought with Miranda. I said some things I shouldn’t have during the visit and Miranda pointed it out. I said “you’re so brave” because I did think she was brave! She’s staring death in the face and during the visit she’s asking questions about us, our transplant, and limiting the conversation to herself. I mean, if I was her, I’d probably be shitting myself, crying, moaning, complaining – being anything but graceful. How does Barbara maintain her composure in this time of crisis? Probably the most critical time of her life, the most acceptable time to be a crying mess, and she is a champ. She looks good too! She talked for us for 40 minutes. She is brave.

I snapped at Miranda. I yelled at her because she was listing off reasons that you shouldn’t say “you’re so brave” to someone in hospice and I said that I already felt bad enough it was like she was rubbing salt in the wound. Earlier, just after we finished the visit, I said I was sad. Miranda told me not to be sad because Barbara’s life is beautiful. She was able to live such a long life and death is not a natural part of life. I said that’s true, but it’s still sad. I mean, it’s okay to be sad visiting someone is hospice!

Miranda said she already accepted her own death. And then I said, are you for real? Because, like, are you for real? She’s 19. I’m 20. How could she accept her own death? She said that if she died tomorrow, it would be okay, because she already accpeted her own death.

For the first time ever, I saw the dark side of Miranda. I always thought I was the worrier, the paranoia, and the pessimist. Miranda was the optimist and reasoner. But now I was the optomist. I refused to accept my own death because I wasn’t going to die. Not now… not after everything we’ve been through. We need to fight with everything we have, even if the battles are long and hard.

The day before I made brownies with Miranda. That’s what I delivered to Barbara (along with bread). However, I forgot to give them to Miranda after we fought. So I cooled off walking my dog and just couldn’t in the middle. I collapsed in the park and literally sat limp in the grass. The visit affected me more than I realized. Then I drove to Bob Moss’ house and talked with him. He cheered me up because he’s always a good person. Then I drove to Miranda’s house, because it’s not far from Bob, and gave her the brownies. We hugged and mad up, although there wasn’t much to say. What can you say? These are scars we carry for life. The best we can do is eat our brownies and wait for the sun to rise again.

March 17, 2023 – I swam 40 laps today

March 17, 2023March 19, 2023 ~ Campjustin ~ Leave a comment

I swam 40 laps today! This is the first time since my infection, actually… that’s not true. I swam 40 laps when I recovered after my infection but then my heart rate didn’t go down. It stayed at like 110 for an hour after I swam and my doctor told me to hold off on vigorous exercise until we did all testing. After my tests cam back good, I swam for 20 laps. And then like 2, maybe 3?, weeks ago I increased to 30 laps. And today I did 40 laps! And honestly – I felt fine! I also did it in 32 minutes, which means I did around 40 seconds for each lap, which is great! I’m finally getting back into my groove. My mental health is also improving.

This might sound weird, but in a way I’m grateful for this health scare. And now I realize it’s not weird, it’s a blessing. What didn’t kill me did make me stronger. I saw how fragile my life was and how grateful I am for my life. I will never take my life for granted again. It also reminded me that I need to focus on my health. No more pushing my health aside for silly pursuits like school or sex. They of course can have a part in my life but my health comes first, as it should!

March 19, 2023 – Meeting Camila with Miranda

March 18, 2023March 19, 2023 ~ Campjustin ~ Leave a comment

Today I met Camila in Hayward with Miranda. I met Camila at transplant camp in 2019. She reached out to me on IG and I am so happy she did because Oh my gosh! Am I so happy!

We first went to Jollibee and then we got cake at a nearby store. Then we talked in the car and then went to Target. We ended by going to get boba.

I realized how lucky I am to have Camila and Miranda in my life. Of course, Miranda is a blessing. She is my transplant best friend. We have exercised on FaceTime together during the pandemic, celebrated my NYU decision together, and visited Barbara on hospice together. But I have a strong feeling that Camila will also be someone I can call during hard times. She is also someone who had a heart transplant around the same time as me, same hospital as me, and same age as me.

We were walking around Target talking about things. Miranda looked at the baby food and said something about the liquid formulas she had to drink between the times she had the feeding tube in her nose. And Camila said like “yeah, those are disgusting” and I agreed because I also had to drink those nasty ass formulas too! And like… how amazing is it to have all three of us with the same experiences because we absolutely do not relate to 99.99% of the population. I mean, who else can I laugh with about formula and feeding tubes?

Miranda, Camila, me, and another boy named Roque were the “Four Musketeers” in Transplant Camp. I hope Roque is doing well. He’s somewhere near Redding, CA so that’s a three hour drive away. I told Camila we should visit Roque and kick his ass for not visiting us but Camila said he was too far 😩 One day Roque should drive down here so we can kick his ass over here – together!

Camila said we could all write a book. She would have 3 chapters, Miranda would have 3 chapters, and I would have 3 chapters. Miranda said she would need more than 3 chapters. I said the amount of trauma we have between the three of us is absolutely astronomical. It could fill a room!

I also said that we were not done writing our book because there are still pages we need to fill. We have so many pages left and we’re not halfway there yet. Camila is currently experiencing kidney rejection (she had a kidney and heart transplant) for a year now and I don’t know what to feel. I asked Miranda for advice and she said that she thought Camila was fine. Because when you think someone is fine, they are usually fine whereas if you think someone is not fine, they’re usually not fine. I wonder if I should start praying again so that I can pray for Camila. I want Camila to be okay because I need Camila to be okay. She is my fellow warrior and she has not finished writing her book.

I hope Camila doesn’t see this.

May 28, 2023 – We dream the biggest when we dream together

May 28, 2023May 28, 2023 ~ Campjustin ~ Leave a comment

Let imagination take us to new places, dream a bit bigger, dream that it gets better, we dream the biggest when we dream together
Dream Together – Barbie

I wanted to name this journal entry “Going to sleep and not knowing if I’ll wake up” but since this is public and published in the middle of the night, I didn’t want anyone calling the cops on me. So it’s we dream the biggest when we dream together! Oh gosh do I love kids songs. I know it’s childish but children’s movies and songs are filled with such positivity and upbeatness that I can’t help but love them. Sometimes you just need that burst of positivity. It’s actually very brave to be so unapologetically bright in a world that can feel unbearably dark.

According to this article, time does not exist in nature. Apparently time is just a progression of change, but if we paused right now, if there was no change – I stopped breathing, a bee’s wings stops flapping, the Earth stops spinning – time itself would still progress right? If someone was able to pause time and move freely about time for them is still in existence and the moment we return to a state of motion time begins. So time is not really a thing. It’s a social paradox and it doesn’t exist in nature.

I go to sleep without knowing if I’m going to wake up. It feels a little surreal how good things are right now considering the hell I’ve gone through in this year. “Oh, so my suffering here would have an end” Isa exclaims in Virginia Woolf’s Between the Acts. This is what I thought about when running today. My mom promised me we’d run on flat land and she took me on a course uphill. Oh, so my suffering here would have an end, I thought. That’s what I’d always be expected to be – forever enduring pain without complaint. When I was 8 I cried when the nurse inserted a needle inside my hand and I cried but I didn’t complain. It’s surreal how I wake up in the morning despite going to sleep the night before not knowing if I’m going to wake up.

I talked to Lauren (my therapist through my college) and she says that’s why I need to be grateful when I wake up. She’s so right. I’m so grateful for what I have. What do I have? I have a family that loves me. Check! I have friends that support me. Check! I have a community that wants me to live. Check! I think about all the kindness people have shown me throughout the years and I’m so surprised by how kind humanity is. For example, I’m working on my senior thesis and I’ve reached out to random researchers and they’re just ready to hop on a Zoom with a random stranger and help me work out my ideas with me. I’m so grateful for my mom. I was thinking in the shower about how she’s a pusher and how glad I am she’s a pusher. She’s always pushing me to be better than I currently am yet at the same time she celebrates all the little steps I’ve accomplished. She has her toxicity but she loves me. Most of all, my donor. I place my hand over my heart and think about my donor. How grateful I am to them for the ultimate gift of life. The most kind person ever. I hope I can know them one day.

I don’t care who you are, where you’re from, what you did, as long as you love me
As Long as You Love Me – Backstreet Boys

That’s why when I wake up I feel so grateful that I am alive. I think about those who didn’t make it to 20 and how blessed I am to make it to 20. After my 5 year heart transplant anniversary party, Vicki (a kidney transplant recipient I think 17 years?) sent me a letter saying:

“Looking back in my most difficult times, I wish I’d had more faith that things would work out okay. And they did. However, I wish I’d enjoyed the moment more, good or bad, instead of all the internal struggle.”

I think that’s going to be my mentality from now on. I’m going to have faith that whatever happens it’ll work out okay. Even if what happens is death, I’m going to have faith that it will simply be my time and for the best. I’ll have faith that whatever happens it’ll all work out in the end. Although, I don’t even know if there is an “end.” I don’t know if there is such a thing as an end. In Marcelo Hernandez Castillo’s Children of the Land, he believes that we’re in a loop that reiterates over and over again. However, in each iteration we derive different meanings even if the repetition is the same. I love that. Alas, I digress. I believe that no matter what happens, things will work out.

I’ve also learned that sometimes you just gotta have a laugh.

I’m going up! It’s about as bad as it could be, Seems like everybody’s bugging me, Like nothing wants to go my way…Even something as simple as Forgetting to fill up on gas… Just gotta learn to have a laugh
Up – Shania Twain

Sometimes there are things you can’t control. It’s better to let those things loose than worry about them. Izzy’s (a heart transplant recipient) mom says that you control the things you can control and don’t think about the things you can’t. Sometimes when things don’t go your way, you’re sad, stressed, worried… you gotta learn how to sing.

You think you’ve gotta hide it, Don’t hide it one the shelf, Let your waist start moving, watch the way I do it, do it See me do it like nobody else… Just sing, sing it together, Louder than ever, ever, forget everything Just sing like it’s what we’ve been missing And they’re gonna listen, listen, forget everything
Just Sing – Trolls World Tour

I love getting in my car, driving to nowhere, and just having a blast with my music. There are moments where everything disappears, including my sadness and fear. It’s not very climate friendly, but it’s extremely mental health friendly.

I could be better, faster, smarter, healthier; I could be more. But I am what I am. Take it or leave it, I am what I am. Acceptance of who I am, with my heart that wears its scars on its sleeves, is a process. I’d be lying if I said one day I reached a destination where I loved every part of myself. I grieve the healthier version I imagine Justin is living in an alternate universe. But acceptance of myself means that I feel contempt of who I am at this moment. I accept who I am now, who I was in the past, and who I will be in the future, if I have on or not.

Take it or leave it, I am what I am
I Am What I Am – Emma Muscat

Therefore, those moments when I go to sleep and don’t know if I won’t wake up isn’t a curse, it’s a blessing. It’s a blessing because if I don’t wake up, I won’t even know I didn’t wake up. It’s a very peaceful passing and many people pass away painfully. On the other hand, if I do wake up, I am blessed to have lived another day. My therapist was right! I should feel oh so lucky. And I do 🙂 At least for now and for the past two months. Since I received the fact that I do NOT have rejection at the end of April, life has been pretty good. Thank you! God? Maybe. Thank you God! If not God, then just thank you!

Let me leave this world with the hate behind me, And take the love instead. Give me only love, only love
Only Love – Katy Perry

February 10, 2024 – Taking a Second for Granted

February 11, 2024February 11, 2024 ~ Campjustin ~ Leave a comment

I don’t take a second for granted. That’s always been my motto. Ever since my heart transplant, I’ve been acutely aware of how precious time is. Time, the most valuable resource in the world, seems to be something that’s always at odds with what I am. Who I am, what I am, what my body tells me to, what I’m always up against. So I’ve always said, I’ll never take even a second for granted.

I don’t know why, I don’t know how, but I’m determined that I am going to take a second for granted. Someway, somewhere, somehow, I will find a way. Sau told me at the TRIO holiday part back in December 2023 that I need to have firm belief that I will live. I will live to be old! And I’ve just never believed that. No matter how much I pray to God I always have a deterministic outlook that I will die soon. I just can’t shake off that feeling – it’s a feeling I’ve had since I was 15.

I feel that there is some part of me that is opening up to the idea that I will live. I will live to be old. I may be wrong – I THINK I’m wrong – but is there any harm in thinking that way? Maybe it’s so horrible to think of the opposite, that no, I will not live to be old, that it’s done so many great things for me, but it’s also done so many bad things. I just don’t have that balance. I don’t have that time on my hands, but also maybe I do.

I just feel such a deep part of my soul a yearning to live. I don’t have any extreme goals in my life, but just a wandering sensation that I just want to hold onto my life and not let go. My dreams aren’t dreams but a reality to most. I want to be able to turn 21, 22, 23, 24, 25, 26… I want to marry, I want to buy a house, I want to have a house. I want to go to work, I want to advance in my career. I want to go to McDonald’s in the drive-through and order a Big Mac and gobble it down in the parking lot. I want to drive to the movies and watch Frozen 3. I want to put my hands in the sand and throw it up in the air. I want to swim, run, hike, and laugh, and smile, and yearn. I want to be 21 without the guilt of death and the souls of my friends surrounding me. I want to be 21 without being astounded that I’m still alive, looking back at my past and shuddering about how horrible it is. So many pillars of mediocrity – the things like American Beauty that people hate about themselves – are things I so dearly I wish I had. I want to be a mediocre person because mediocre people don’t struggle. I don’t think I’m incredible but rather really disgusting. I want to be someone average so that I don’t have to deal with all of this.

Ok, now, why I’m writing this. This sounds stupid. I know it sounds stupid! But no one’s really going to see this. I’m thinking of turning down the acceptances I received from Johns Hopkins and Dartmouth so that I can work for two years and apply to the Harvard School of Public Health. I know, I know. I know. But growing up, with my family, I do have a chip on my shoulder. Being told by my mom, repeatedly, so many times, about how stupid I am, how intelligence is not in my DNA, how I would never be able to achieve academically. And how in high school, how I tried to be smart, but then my heart transplant got in the way, and I was never able to catch up. And in college, how my health pulled me out of school again and almost disrupted my studies.

I want to go to Harvard. It’s like my number one dream in the world. The things is the Harvard School of Public Health requires two years of work experience. I didn’t apply to it because of this because my thinking is, again, I have no idea what my future situation is. I don’t know if I’m going to be alive in two years. Or if I’m going to be healthy in two years. Or if I decide to start a family and have more responsibilities in two years. Or if my mom gets sick and I need to take care of her in two years. A lot can happen in two years.

But, after getting all these wonderful acceptances, I think I can get into Harvard. And honestly, I never allowed myself to consider this, but I am now. I’m letting myself have hope that I can live long enough to do this. It’s hard, maybe it’s not, but it is hard. It’s really fucking hard. It’s really hard to admit that maybe I have a future beyond death and despair, hopelessness and death, but a promising future in which I can do what I want.

Maybe I can dig my feet in the sand, run a half marathon, and dance in the rain. Maybe I can swing dance under the lights with my best friend and be loved by someone else. Maybe I do have a life where I’m not driven by fear and a life where who I am is good rather than bad.

I also know two things can happen at once. I also know that this part of myself is not going away anytime soon. Who I am – all the doubts I have, all the trauma I carry, all the brokenness I feel within my soul – that is a part of me. But I also know that the person I am is someone who can love, laugh, and live. I know that I have the overwhelming, unbearable darkness but that it doesn’t have to overpower my life. Who I am is also resilient, kind, smart, intelligent, caring, powerful, ambitious, and wonderful. I have a lot of good inside me. I know that as a part of who I am.

My mom will probably never understand. Oh my gosh, do I have mommy issues. But she will probably never understand the ways I feel about myself, and that’s okay. My sister, dad, grandma, grandpa probably won’t understand. My friends probably won’t. My transplant community probably won’t. But I do. I know who I am, and I have to remind myself that I have a life worth living. I have a life worth fighting for. I have a life that’s good and not terrible. I have a life that doesn’t need giving up.

Update: I just saw on Instagram that one of my heart transplant friends is in the hospital and just had surgery. He had his heart transplant at 15 when I was 17. Fuck. This sucks… just when you have hope that everything can be good and great, you see something like this and it takes you back.

It’s like a pendulum, you swing between hope and fear sometimes 20x a day. It’s not a fair life to live. I don’t want to live a life like this. I just hope he’s okay and doesn’t die like Camila. I really can’t handle another death. I mean, it’s not fair. It’s just not fair.

There’s nothing more I’d like to be than 21, living with my friends in the big city with parties and life. But that’s not possible for me… But also that’s not the life I’d like to live, right? I’d rather live like this, than anything else… I am so grateful for what I have. I am. I’m so grateful. I don’t take a second for granted.