I know a lot of people don’t have time to read tons and tons of journal entries, so this summarizes my post-transplant recovery. Check it out if you want! π
How to register to become an organ donor:
"Although the world is full of suffering, it is also full of the overcoming of it." – Helen Keller
I know a lot of people don’t have time to read tons and tons of journal entries, so this summarizes my post-transplant recovery. Check it out if you want! π
How to register to become an organ donor:
I cannot emphasize enough what going onto Tasty means. It’s such a big leap forward because we were able to reach so many people.
I’m not usually a vlogger (I’m a blogger), but… π€©
Justin’s Hearty Recipes is here! π Click me π
You can order the book on Amazon and Blurb. They’re both $30.99 (crazy expensive), but if you order the book on Blurb I receive profit. Here’s the link below:
Today at 3 AM my parents woke me up and unplugged the feeding tube from my G-Tube. I thought βOh God. Another surgery? Iβll go back to sleep for a few more minutes.β I could hear my dad saying βYes, yes, thank you. Where do we go? Okay.β My Mom then shook me again. She said βJustin, they have a heart ready for you.β At that moment I jumped out of bed. My heart was here? After 2 weeks? Not 6 years? It was unbelievable!
My Mom didnβt pack much stuff. Inside her bag was her clothes, a phone charger, and Kardia. All I packed was my stuffed teddy bear, Beary. When I got inside my momβs car, I felt something amazing. Similar to the feeling a mom has before giving birth, I knew that after today my life is going to change. Forever.
My dad followed in his car behind my momβs car. Lights blurred as they merged on the highwayβs scenery. There werenβt many cars on the highway, but I tried to guess the ones that were there why they were driving at 3 AM. The ride was silent since my Mom didnβt say anything. I asked her, βAre you nervous?β She replied, βYes. Are you?β I said, βYeah, but mostly excited.β At this point I texted my friends. There were only 3 friends I trusted with my health condition. All of them helped me with my homework when I was gone, listened to me rant about my declining heart disease, and overall pretty good people to hang out with. Each one I texted 2-3 sentences about my transplant and how much I appreciated them.
The hospital seemed majestic that night. When we arrived, the sign that said Lucile Packard Childrenβs Hospital seemed to glimmer under the moon. I made sure to enjoy the air outside because I knew that I couldnβt breathe it for a while. Inside the garage, I suddenly realized that I should take pictures, so I took pictures of the garage. After meeting up with my Dad, we took the elevator upstairs.
On the ground floor, the receptionist told us that we needed to go to the Treatment Center where most surgeries were performed. However, the Treatment Center was closed. While my Dad tried to call the number that contacted us at 3 AM, I decided to look at the miniature statues of rabbits and turtles on the floor. In my mind, I was thinking, βIs this really happening? Whatβs going to happen afterwards?β I never thought, βWill I survive?β I knew I was going to survive. I never had any doubt.
We decided to go directly to the PCU (Patient Care Unit). The nurse at the front immediately asked βAre you Justin Wang?β After confirming it was me, she had me take a shower. She explained it was because I wouldnβt be showering for a long time after the surgery. The shower was warm, not too hot or cold. I immediately put on my gown and my dad took a picture of my with a thumbs up. For me, the hardest part of that day was when the nurse put the IV in me. Thatβs it.
An hour later, they transferred me to the surgery center. At the surgery center was a list of patients and their surgery. There on the top of the list was me: JUSTIN WANG – HEART TRANSPLANT. I was proud of myself, I was going to do something amazing.
At 6 AM came the anesthesiologists. They told me the one IV I had in me was enough. Once I was unconscious they would place multiple IVs and tubes inside of me. They also told me the doctor was preparing for the surgery. I remembered from my transplant education that βthe hardest part of the operation is not replacing the heart, but cutting the individual veins.β 7AM was my scheduled surgery time.
Around the same time my sister called me. She was crying because she was so happy for me. I know that since I was in the hospital, my heart failure has impacted her life in a negative way. Even through this she was a good sister, and I really appreciate that.
My friend, Ray, also called me at the same time. He said βIβm so happy for you man. I totally want to visit you after youβre done.β When I heard him say that, I was overjoyed. Ray has been a big supporter in my life. Although he was busy being a genius, he always made time for me and my health. We were in two classes together, both volunteered together, and even spent a weekend in a tiny hotel room in Santa Clara together.
Around 7:30 they told me it was time. They injected some βhappy juiceβ through my IV, and I instantly started laughing. I always liked the βhappy juiceβ because it made me feel happy. I said goodbye to my mom and dad, and they in turn kissed my cheek.
The last thing I thought about was my mom. Sheβs my biggest supporter in life. Sheβs my caretaker, best friend, and supporter. Compared to other moms, sheβs supermom. When I suggested online school for the next school year, she showed me 3 pamphlets for online school the next day, When I said I didnβt want to go to school, she whipped out her phone and dialed the schoolβs office. When I was in the hospital, she never left me and always held my hand.
My Mom is probably the biggest sufferer from my medical condition. When I was in the hospital for my first open heart surgery, her dad also died. While my grandfather was being lowered into the ground, I was under the knife. My Mom is so glad that I got a heart transplant. Ever since I was on the list, she started taking anxiety pills.
The operating room doors were the white swinging doors at any standard hospital. When they wheeled me inside the operating room, I remember there being a bright light. The bright light is the end of my memory.
Shoot me. Please.
Everything is painful. What is this in my neck, an IV? Thatβs painful. What is this in my hand? Itβs popping out of the skin like a bulge. Iβ¦ what??? Actual STAPLES inside me. I use staples to turn in my homework, not seal up a big HOLE.
I feel like Iβm going to die. My heart is thudding so loud it might pop out of my chest. What is this? I canβt hear anything because my heart is pounding so loud.
Why are there tubes inside of me? Thereβs actually tubes inside my chest. Theyβre sucking excess blood from inside my chest.
Iβm so uncomfortable. Iβm sweating all over. Why am I so hot? I canβt move and change a position since Iβm so sore, which I donβt understand? Before I went into the surgery I could at least sit up.
Thereβs so much plastic inside me: the chest tubes, IVs, and monitors. Thereβs also a lot of stuff connected to me to. Thereβs also bruises on my hands and arms. Thereβs also a big pole with tons of machines onto it. I guess thatβs where all the medications are.
They want to remove my breathing tube. Did I not mention thereβs a tube inside my throat? Yeah thereβs a tube inside my throat. They want to remove my breathing tube while Iβm conscious. And they did. They just yanked it out like tug a rope. At least I can eat and drink now.
Thereβs also a catheter in my urethra. Soβ¦ yeah.
Iβm heavily drugged, so at least Iβm happy about that. I mean theyβre giving me pain medication which is great (even though I still feel awful).
Was transplant right for me? Was this a mistake?
Iβm so stressed. Nothing prepared me for this.
I sat down for the first time today.
Iβve been in bed all day yesterday. Physical therapy wants me to be as active as possible. They held the tubes and lines so I could walk without anything in my way.
I was sweating so much that Iβm glad to be off the bed. What I didn’t expect was how sore I was. I swear, I had the flexibility as the tin man.
My heart is horrible. My heart suffered at this tiny shred of exercise. When I was helped up, my heart was all THUD, THUD, THUD. It did not like this.
It was so painful getting up. My heart and soreness combined with my anxiety of tripping over the wires and having all the IVs pulled out of me was awful. Once I was on the chair, I was okay.
Turns out I sweat a lot on the chair too! As soon as I sat down, I immediately felt hot.
Well, at least Iβm progressing fast. I got my breathing tube removed and I had my first physical therapy session today.
3rd day post transplant!
Oh I ate breakfast today! Which is great. Since my breathing tube is out, I have the ability to eat. The fact that Iβm eating is telling me that my appetite is coming back.
Also, my grandma visited me today. It was nice seeing her.
The physical therapists came again today.
Itβs so much pain. And so uncomfortable. Thereβs so much stuff inside me. These tubesβ¦ the hot and coldβ¦ the palpitations.
I donβt know how Iβll survive like this. I canβt survive like this. Even if itβs only for one week.
When will this stop?
Was transplant even right for me? This heart feels worse than my damaged heart. What if this was a mistake, and everything is screwed up for me?
I canβt help but feel so sad. Everyone in my grade is preparing for finals. I want to be preparing for finals. I want to study until 1 AM and stressed. I want to be at school. I want to be normal!
Why did I have to be the one to have this super rare disease! I canβtβ¦ why??? Why ME!
I pooped today. Which is great! I also sat in my roomβs chair.
Iβm not allowed to shower, so my hygiene isnβt that great. The nurse washed my hair with dry shampoo and water. Then the nurse wiped me down with sanitary wipes.
My chest tubes were removed today. The nurses first removed the tape, which they said was βthe most annoying part since thereβs a lot of them.β Removing the tape doesnβt hurt, but it does create anticipation. After the tape was removed, they yanked the tubes out. It shouldnβt be done slowly, because that creates way more pain.
They covered the holes with some gauze pads and tape.
Okay, so the chair is now where I mainly sit. I donβt want to lay on bed all day because of my hot and cold sensations. If I lay on the bed, I instantly become extremely hot and start sweating.
I have physical therapy every day now. Physical therapy makes me walk a loop around the ICU 3 times a day. Itβs hard because my new heart is still adjusting to my body.
My heart pounding just goes crazy when I stand up. At least I don’t hear it always. Before every hour, minute, and second it would go THUMP THUMP THUMP.
When I walk, I have to wear a mask. I canβt get any infections right now. The mask makes breathing harder than it should be.
I donβt poop out much now. The doctors said I had to poop, so they got some guy to massage my butt so I could poop. It didn’t work.
Yesterday I didnβt poop. They even had some guy massage my butt. Today they placed me on diuretics. I pooped.
My Dad also visited me today, so my Mom went home. We walked around the ICU. For physical therapy Iβm supposed to walk a loop around the ICU 3 times a day.
My heart pounding goes crazy whenever I walk. The reason Iβm doing physical therapy is to raise the bar for my endurance. Everyday Iβm pushing my endurance levels so I can recover faster.
I have so much pain. The doctors lied to me. They said that I would have tons of energy after transplant. Thatβs a lie. I feel horrible. Thereβs pain everyday. Thereβs pain always.
Is my heart okay? Was a transplant right for me? This heart works worse than my damaged heart. What if all this pain was for nothing?
This heart is always pounding. Every second Iβm awake I can feel and hear it. Itβs always THUD, THUD, THUD.
I have anxiety because of the heart transplant. I have never had anxiety as bad as this before transplant. What if this heart stops pounding? My staples feel like theyβre going to pop and my chest is going to open up.
I HATE THIS POLE. Why is there such a big pole next to me! Thereβs tons of cords coming from my body. I always get myself tangled. Thereβs more plastic in me than the Pacific Ocean.
Why the hot and cold sensations? One moment Iβm hot, the next moment Iβm cold. I canβt sleep because of this (and also the pain). I lie down and in minutes I start sweating. I sit up and Iβm instantly freezing.
Physical therapy is the worst. They want me to walk around the unit three times a day. I can barely sit, not even walk. When I walk I have to constantly take breaks. I also have to concentrate to not trip and fall over my lines connected to my IVs, which sucks.
I try to distract myself from the horribleness of this situation by watching TV. Nothing can distract myself from the pain. Itβs always nagging and tugging at me. Like, why?
Iβm so sad. I canβt explain how sad I am. Everything seems hopeless. This heart transplant was supposed to be my treatment, but itβs not working. All itβs brought was pain.