March 24, 2019

I just realized something today, that I probably should’ve realized sooner: I’m going to die young.

I’m going to die at 30.

You might not know this, but a heart doesn’t last forever after transplant. The average heart after transplant lasts for 15 years.

I got my heart transplant when I was 15, and the average heart lasts for 15 years. I’m going to die at 30.

I’m not scared, which is weird. I’m not afraid, because it’s so long away.

15 years seems so longs, but 15 years also seems so short.

And it’s not fair. It’s so not fair.

An average person could eat junk food all their life, never exercise a day in their life, and never go to the hospital, and still die of old age. Me, I have to eat “nutritiously”, exercise six times a week, and go to the hospital semiannually, and die at 30.

Why do I have to suffer through pain just to stay alive?

Sure, I could get another heart transplant at 30, but I have to suffer through THAT again. And I really don’t want to. Also, let’s be real, if I had a heart transplant every 15 years, then I’d have to have 4,5 hearts to live until old age.

Lizzy, the person I met at the transplant reunion party, had her heart for 30 years. Could I be like that? Sure, but that’s only 30 years.

I would still have to have another transplant to live until age 75 (assuming my second heart also lasts 15 years). And what happens with that transplant?

Once one organ starts to fail, all your other organs start to fail. With my second heart transplant, will I need a double transplant? Will I need a kidney transplant, liver transplant, lung transplant, along with it?

And the heart transplant list is so uncertain. I was lucky to get a heart in 2 weeks (which is unheard of, by the way), but next time I’m not going to be as lucky. I could wait on the list for years.

I could die on the list.

Chronic heart failure happens so fast that it gets out of control. It’s like an exponential decay graph, and it’s out of our hands.

It makes me mad. When my classmates are settling down with their spouses, buying their first house, having kids, I won’t be there.

And I hate it.

I came here all this way to do what, do it again?


I know I’ve probably scared you, or depressed you, but I’ve thought about, and I’m okay with the thought about not living until old age.

Lamenting and moping about my life isn’t going to help, and it won’t make myself better. I want to choose hope, so I will choose hope.

Medical research is growing at an exponential rate, and by the time I’m 50 there will definitely be new discoveries.

Maybe I won’t live forever, but I’ll live long enough. Fifteen years is pretty long, and who knows, maybe it’ll be longer.

Some people live more in 20 years than others do in 80. It’s not the time that matters, it’s the person.

David Tennant

March 26, 2019

Tomorrow I’ll meet with my G-tube doctor, and he’ll decide if it’s time to pull the G-tube out.

I’m scared, because in the past I’ve never had a good experience with that doctor. Like, never.

The G-tube is something I rely on, and it’s been hard trying to quit. I’m sorry if I’m not chronically ill enough for your sympathy.

Also, thinking about March 24, 2019, I have to go through with this entire process in fifteen years. Do I even need to pull it out?

Once it’s out, it’s out. For good.

That means if I slack off on nutrition, or become sick enough that I can’t eat, the door is closed. Forever.

Or if I go through surgery to get it inserted again. 😰

Would it be better in the long run to not remove it? Geez, I don’t want to think about it.

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!